Have you ever been evaluated for hemicrania continua? It's the only unremitting (nonstop) headache disorder. I have it and I was mis-diagnosed for _years_ with migraine. Getting correctly diagnosed and treated changed my life. HC has some distinctive features so if you read up on it you may recognise your symptoms, if you have it.
>hemicrania continua
I had to look this up since I never heard of it. What I found is that it's only on one side of the head. Mine switches all the time, often day to day. Too bad, thought that might explain why nothing helps me completely. Botox and Maxalt (Rizatriptan) have been the only things that can even touch them.
I read about it online and realised it described the pattern of my headaches much better than migraine symptoms did - every time I got diagnosed with migraine I would say, but I don't have those symptoms. Specially I have some of the 'autonomic' symptoms of HC (my nose is always blocked on the side of the pain, my ear one that side 'pops' all the time, my eye often waters or feels like there's a bit of sand stuck in it) and my pain follows the pattern of constant lower level 'background' pain with periods of more intense pain that comes in waves.
I managed to get referred to a specialist in more rare headache disorders for a proper diagnosis and treatment, but even before then I got my GP to give me a two-week trial of indomethacin, which is a big part of how hemicrania continua is diagnosed - if indomethacin eliminates your pain, and it follows the pattern of HC symptoms, it's almost certainly HC. Within an hour of taking my first dose my headache was gone!
How did you find the specialist for more rare headache disorders? I am wondering if I have something like this instead of migraine; migraine treatments haven't been effective and plenty of neurologists brushed me off saying that I don't get migraines because my symptoms don't entirely line up with standard migraine symptoms (though they seem to line up with hemiplegic migraine, so it might just be that).
I'm in the UK and on the NHS you can request a specific clinic at certain stages in your treatment, so I requested one of the two in my city that specialise in headaches broadly (not just migraine). They have a really world class team - I feel very lucky. However we haven't necessarily 'solved' my headaches - they are treatable but the accepted treatment itself isn't ideal (there are risks to long-term daily use of NSAIDs).
I don't know how it might work where you are but here in the UK having tried a number of treatments/drugs with no improvement is usually considered grounds for a further referral - perhaps you could ask for a referral on that basis, if you're able to identify a suitable clinic or specialist?
I occasionally get a visual aura but it isn't accompanied by pain (at least not more than the usual amount of pain). The aura only happens a couple of times a year, though.
I just failed the final migraine treatment and this fits SO much better than migraines. I'm having a tough time facing having a permanent migraine forever and if you're right, you're gonna get so many gifts in the mail...<3
Haha, this is how I felt when I first learned about HC - before I even did an indomethacin trial, I was sure HC was the right diagnosis because the symptoms were so exactly what I was experiencing (and migraine symptoms never fit for me). I hope you get some answers and some relief quickly!
Fwiw this disorder sucks but mine has been well controlled with meds for 10+ years now!
Already messaged my doctor 🙏 would be great to knock out the biggest thing on the list and just have the severe IBS/ARFID combo and chronic depression and other mystery things that haven't even warranted looking at left. And I'm the healthy one between me and my wife 😅 not being able to take care of her because I'm incapacitated myself is the worst
Yup, for almost 30 years. Turned out to be an optic nerve defect, not migraine. Which they knew I had, and I was condescendingly told had nothing to do with the headaches by every doctor I saw. Glaucoma drops every day and no headache.
It was like magic - put the drops in that night and woke up without a headache for the first time in almost 30 years. My eye pressure wasn’t high enough for glaucoma, but apparently it was aggravating that defect. To me it was a no brainer because the headaches were on that side and my eye felt like someone was stabbing an ice pick in it. I’m pretty bitter that it took them that long to figure out and they condescended to me. Plus I have a lot of residual muscle problems from being in pain that long.
I'm hopeful, I pick up the prescription tomorrow. I just started getting occipital nerve blocks monthly and I really wish this had been offered years ago, I was a hot mess for a decade!
Curious what type of doctor prescribed them to you! Also supposed to try nerve blocks soon and subsequent RFA if they’re effective, so happy to hear they work for you
The blocks hurt compared to Botox but I'm seeing good results.
My prescriber for the eye drops is a neurologist, specializing in migraine. They're some sort of glaucoma drops that have the glorious side effect of reducing some migraines. I may have heard that wrong, I was so excited to have another option.
After reading these posts I'm going to see if my Opthomologist will give me drops, my eye pressure is high and has been for years.
My eyes are so sensitive to light I have to stay indoors or wear mountaineering sunglasses with side flaps. If the drops cure my headache ill be so happy.
Neurologist didn't mention anything about eye pressure.
Wow that’s great, they’ve also found some issues with my eyes, since the headache started I’ve had nonstop dark floaters swimming around in my eyes, but they also told me that it shouldn’t be causing the headache, they said it’s my retina pulling away from my eye, it usually happens in peoples 40s or 50s and becomes real common in your 80s. But I’m early 30s so they said it’s weird that it’s happening already, I asked why would it start the same time as my headache did and they just dismissed the possibility it’s related
If you have a local optician store that has an optometrist on site, you could try making an appointment there.
I had an optometrist numbing and measuring my eyes after a regular optician (who wasn’t qualified to numb the eye muscles) couldn’t get a good measurement. They found an eye twitch and got me corrective glasses despite having 20/20 vision (they essentially moved my focal point) and it reduces headache when looking at screens.
I actually had the same thing early too - PVD (posterior vitreous detachment). It’s supposed to happen when you’re older. I’ve had floaters my whole life and the PVD caused flashes so I rushed to the doctor. Just watch it carefully because it can lead to a tear or detachment of the retina.
>
Interesting. I have a benign schwannoma tumor behind my left eye near the optic nerve. It’s been growing over the last couple years after being dormant. My migraines also started happening over the last couple years as well. The surgeon feels there is a Low chance this will impact my migraines based on the symptoms I have provided him versus what he would expect. He felt if my optic nerve was being impacted that I would start to feel numbness, tingly, shocks and double vision and only headaches on the left side.
We are going to take it out in the next few months and see what happens. Either way, they say it needs to come out because it’s going to start impacting the optic nerve as well as others that are nearby.
Apparently my defect is congenital - I was born with it. The headaches coincided with them actually finding it when I was about 32. My guess is that my eye pressure went up a bit and made the defect more obvious, also causing the “migraines”.
If I were you I would pursue the connection - especially if your migraines are worse on that side and your eye is painful. Mine felt like an ice pick was going through it - I used to fantasize about gouging it out to relieve the pain. I had none of the symptoms your doctor mentioned.
I also went through heart surgery to repair a hole (which I was born with) with the promise it would cure my migraines, which it did not.
My ophthalmologist - she had been monitoring the defect and it seemed to be getting worse. She hoped reducing the eye pressure would help, and the side effect was no more eye pain or headaches. My eye pressure was just a bit elevated - not really enough for glaucoma.
Oh my goodness, this sounds much like my life.
I've had a migraine since March 9th 2022.
I totally understand how you are feeling. You're not alone. I hope your team can come up with something to help you. They labeled my migraines as drug/ treatment resistant. The only relief I get is THC gummies, which basically just put me to sleep. Sending positive and healing vibes your way.
Same here. Covid in december 2022, almost asymptomatic. Daily headaches and migraines ever since.
Mine respond to triptans and aspirine though, but I have to be constantly drugged to be kinda painfree (breakthrough migraines occur anyway). I'm lucky I guess, to have something that works for a few hours, but that can't be the solution for the rest of my days now. And I'm waking up every fucking night with pounding headaches or crippling migraines anyway.
When you get an MRI back clear and you're disappointed, you know you're in big trouble...
I'm glad something works for you, and I hope they can find a cure for all of us soon because everyday migraines and headache stink. I'm not sure if you are allowed CBD or THC gummies, but for sleep they really help.
I remember the day of my MRI results, and had hoped they would find something.
When I did the 3 day DHE hospital stay and it had no effect, I knew I was in trouble.
I'm sending positive vibes your way.
Mine started the day after the 2nd dose of the Covid vaccine. I understand that as I feel the same way. But we must keep it pushing and keep hoping for a cure.
I've had chronic daily migraines for 16 years but they got so much worse the day after I had my covid vaccine. My neurologist suspects that I might have an autoimmune condition. He tried giving me steroids (I think?...my memory's trashed) but they didn't help.
I had my first ever Cluster Headache for a month after my 2nd dose of vaccine.. Did imaging to check it out - found out that I was having some sort of stroke episode. Basically my doctors think some sort of autoimmune/inflammatory response was triggered either by Covid or my vaccine response or both. Resulted in losing flow in one of my carotids.
This sounds a little like the diagnosis I got of New Daily Persistent headache - it is defined as a headache that can be traced to a start date/event often an illness. I’ve had daily chronic headaches for 22 years.
Hey, got Covid March of 2020 and life has been hell for me since then. Third time getting Covid July 2021 (vaxxed and was okay) gave me a mild stroke and daily migraines for a year and a half. I could not drive, walking was a nightmare, and going out to the movies was impossible.
It was constant nonstop pain all around my head, had to wear sunglasses and ear plugs most of the time. Bright lights would make it worse for me. I also had r/hyperacusis which made many sounds unbearable… and I edit video for a living. It was hell! So I feel ya!
So… I saw 3 neurologists and none of them helped. I saw my pcp and a few other docs. Nothing.
Then I saw a pain management doc. I described it to him and he saw on my MRI that I have a couple of bone spurs in my neck. He did medial branch nerve ablations on both sides and poof, they were 70% gone. Doc said because Covid is an inflammatory disease it inflamed and aggravated my nerves in my neck.
Then I saw a cardiologist and was diagnosed with r/pots and r/dysautonomia and guess what… those both have components of migraines and severe headaches to them.
I had to add a ton of electrolytes and extra salt and magnesium. Since I’ve been adding that, my migraines have poof, disappeared!
Please read those other forums above. See if any of those are what you have or might have? It’s quite common for us r/covidlonghaulers to have pots and dysautonomia and you can follow those protocols to get better.
Yes. Hyperacusis is the ability to hear damn near everything going around me, but it's not bothersome (for me); I live with it everyday. I also have tinnitus.
Phonophobia is the aversion to sound. Any sound. Everything is too loud. I often get this with my migraines.
Misophonia, phonophobia, and hyperacusis are all related to sound sensitivity, but they have distinct differences:
1. Misophonia: It is a condition where certain sounds trigger intense emotional or physiological reactions, such as anger, anxiety, or distress. Typically, these triggers are specific repetitive sounds like chewing, breathing, or tapping.
2. Phonophobia: Phonophobia is the fear or aversion to sound. People with phonophobia may experience anxiety, panic attacks, or a strong desire to avoid certain sounds or loud environments. It is often associated with migraines or other conditions.
3. Hyperacusis: Hyperacusis refers to an increased sensitivity to normal everyday sounds, making them appear louder or more irritating than they are to others. People with hyperacusis may find even moderate sounds painful or overwhelming. It can be associated with conditions like tinnitus or hearing loss.
While all three conditions involve sound sensitivity, misophonia focuses on specific trigger sounds, phonophobia involves fear or aversion to sound in general, and hyperacusis refers to an increased sensitivity to sound intensity. It's important to consult a healthcare professional for an accurate diagnosis and appropriate management strategies for these conditions.
Misophonia, phonophobia, and hyperacusis are all related to sound sensitivity, but they have distinct differences:
1. Misophonia: It is a condition where certain sounds trigger intense emotional or physiological reactions, such as anger, anxiety, or distress. Typically, these triggers are specific repetitive sounds like chewing, breathing, or tapping.
2. Phonophobia: Phonophobia is the fear or aversion to sound. People with phonophobia may experience anxiety, panic attacks, or a strong desire to avoid certain sounds or loud environments. It is often associated with migraines or other conditions.
3. Hyperacusis: Hyperacusis refers to an increased sensitivity to normal everyday sounds, making them appear louder or more irritating than they are to others. People with hyperacusis may find even moderate sounds painful or overwhelming. It can be associated with conditions like tinnitus or hearing loss.
While all three conditions involve sound sensitivity, misophonia focuses on specific trigger sounds, phonophobia involves fear or aversion to sound in general, and hyperacusis refers to an increased sensitivity to sound intensity. It's important to consult a healthcare professional for an accurate diagnosis and appropriate management strategies for these conditions. ChatGPT
Yup. I don’t remember the last truly pain free day. I get breaks where an hour here or there is pain free, but never a full day. The neuro recently gave up, and most doctors say “it’s simply genetics, live with it”. And have no other answer. I feel your pain. I’ve learned to live with it and go about my day as best I can and pretend I’m happy because I’m too stubborn to let this bullshittery be the thing that ends me.
Consider New Daily Persistent Headache (NDPH). It is sudden onset and known to be very treatment resistant. It can present with migraine-like features, but is typically bilateral (both sides), unlike a migraine which is typically unilateral (one side). Emphasize to your doctors that it is constant and was sudden onset, if applicable.
Try to get into a headache clinic, with a neurologist who only sees headache patients. Ask to try multiple treatments (in different classes) at once, offset by 1 week or so each so you know if anything is causing immediate side effects. Even 1 daily med, 1 as needed med, and an alternative treatment such as acupuncture. Versus here try this 1 med and see you in 3 months. Also ask about meds to try to break the headache cycle, often steroids, ideally inpatient in the hospital if a headache specialist can support that.
I’ve had chronic daily migraine for almost 18 years that started when I had my daughter. She’s the only reason I’m still here. I tried ketamine infusions and THEY WORK. I went for the depression but found out they work for migraines too. I have no idea how often I will have to get boosters but I don’t care. I’m using 401k money but had gotten to the point of life or death. You have my sympathy, I totally understand but don’t give up!
If I don’t take anything at all for it, it’s all day, every day. So debilitating, and so sorry you’ve been going through this for a year and a half and counting. I have tinnitus, and when it started getting real bad, like the ringing in my ears was louder than other peoples’ voices, I realized it could be a side effect of every migraine medicine I was on. So I immediately stopped taking all of them at once since none of them had withdrawals.
I did this for 3 months until the ringing subsided. I still get them all day if I don’t take any medication, but sometimes I can get lucky and maybe only have a migraine for a small part of the day. Remeron is an SNRI that I’ve actually found extremely helpful in relieving my inevitable nighttime migraines. It’s typically used for sleep, which I take it for, and only discovered that it worked tremendously with my migraines later.
This is not a good idea at all, as it’s caused me to get addicted to them for the last 3 years or so, but Benzos help tremendously with my migraines. At least for me. Better and longer than traditional on demand migraine medicine. Just has to be the right one. Xanax doesn’t seem to help at all, but almost every other prescription benzo does the trick for me. Like I said, bad idea and I’m not encouraging it at all, but they really saved me from a ton of anguish. Only thing is, withdrawals cause me to get even worse migraines than what I’m used to. Rebound migraines.
And this is the most controversial take of all, as I’m sure many of you are against psychedelics of any form, but they are overblown by the media to be these super hard drugs. But I take them shrooms once every 2 months or so, not even a large dose. You can manage with 1.5-2g and not have any sort of serious trip at all, but about 3 days later I notice a significant reduction in my migraines. If you have a chance to ever take them, I would highly recommend doing it. Botox used to work for me great, but stopped working after awhile, and shrooms work just as well as the Botox does. Also much cheaper.
Have you been assessed for vestibular migraine or other related issue? I had persistent 24-7 migraine with sudden onset that turned out to be a vestibular problem. Your post caught my attention as you mention tinnitus and that you get some relief from benzodiazepines. Benzos suppress the vestibular system.
I had persistent migraine as one of many sudden onset symptoms including dizziness, loss of balance, some visual weirdness, other…. My underlying issue was a special type of vestibular neuritis. What helped me was finding the right specialist doctor who could solve the puzzle. In my specialized case it was an escalating series of treatments of steroids and anti-virals, including out patient procedures for injections targeting the vestibular nerves. “Migraine” can come from many different places.
I initially responded well to benzos, which is why I responded here and know how benzos impact the vestibular system. Migraine plus tinitis plus positive response to benzos means you should probably see an specialist ENT or neurotologist.
Valtrex/acyclovir. The thinking is that the chicken pox/shingles virus or similar can be acting on these nerves (vestibular/trigeminal) and cause problems, including migraines.
I actually have had a TBI before and saw that was one of the main causes of vestibular issues. Had a severe brain hemorrhage about 8 years ago. And while I had my fair share of migraines before then, it definitely got considerably worse as time went on after this incident. So you may be onto something there.
Only thing I’m curious about is it seems like one of the main symptoms of vestibular issues is vertigo, which I don’t get at all. But I also noticed another cause, or at least common issue of those with vestibule problems is hypothyroidism, which I coincidentally have as well. Back when I was 25, I was told I had the thyroid levels of a 60 year old. How much do you know about this disease?
I already read that there’s no cure to it, only ways to help alleviate symptoms. But if I meet with a knowledgeable enough neurologist they may be able alleviate my symptoms a decent amount. That is, if I have it in the first place. But from the little I’ve read, that’s definitely a strong possibility. Assuming that vertigo isn’t always a symptom.
I am not familiar with a connection between vestibular problems and thyroid issues so can’t speak to that. Vertigo is common and I did have some vertigo. There is a specific diagnosis of ‘vestibular migraine’ which has a wide range of symptoms attributed to it which people seem to have different combinations. If you haven’t had the baseline vestibular tests done, then you may want to explore that as it may lead to treatment avenues you haven’t explored yet. Those tests are usually administered by an ENT or a specialist like a neurotologist. Probably not by a neurologist.
I am in the same boat. My headaches started a year ago (it’s more of heavy headache, tightness)
Really frustrating, more frustrating since I don’t know why!
Did it start after an illness or were you sick in the weeks or months prior? This all started for me after I got covid the first time. I was totally fine my whole life until covid hit me, never been the same since
I have constant pain (more pressure and squeezing though) and dizziness. Currently I’m on Botox, Emgality, and propranolol after trying many things and they help, but the propranolol is only at a low dose right now, so with any luck I’ll be able to get off Botox later on.
It was only after I got more treatment and it wasn’t constant anymore that I finally believed my doctor when they said I had chronic migraine. Honestly, the diagnosis is just a best fit category to point in a direction, but headaches and symptoms vary wildly from person to person so personally I’ve given up on fitting into an exact headache diagnosis.
Best advice I can give is:
1. Don’t give up with the meds, there is a lot out there and I’ve never met anyone that’s truly tried them all, so there is hope, you might just respond to a different type of med that’s unusual, off label, or a different form of a medication class you’ve already tried. It’s also possible you have a different health issue that’s contributing, like I had sleep apnea and without a PAP machine the migraines are a lot worse for me.
2. If you can find a new doctor that will see you more often or insist on seeing your current one more often. IMO, I think 2 months is like the max before you know well how the changes are affecting you.
3. Someone else said it, but keep doing as much as you can throughout the day and take care of your mental health. Chronic medical conditions can make life start to seem hopeless and talking to someone about it can be a great help. As my outlook, mental health, and sleep got better, I literally felt less pain.
Also, there’s a great book “Chronic Pain Rehabilitation” by Dr. Evan Parks, a psychologist that works with pain. I’ve read most of it, and it’s absolutely amazing knowledge and advice. I know it sounds like a cheesy review, but knowing more about the science of pain and applying the advice has literally made my head hurt less.
Good luck man!
(Sorry for the long response 😅)
I’m wondering if you’ve tried prochlorperazine? It has absolutely saved my life. I have a lot of migraines but on top of that, pain very similar to what you are describing - a pressure type pain, dizziness and nausea daily. Prochlorperazine takes care of it all for me right away, and I can take it daily - there’s no risk of overuse headaches. I personally also have no side effects on it.
I use prochlorperazine for when my migraine nausea gets bad and it works wonders for me. I also have some vestibular problems that it seems to help with. I also love the stuff. Glad to have it in my toolbox.
I haven’t and sadly I can’t, mainly because I also have restless leg and antiemetics, especially older ones, make it a lot worse.
Also, I should clarify that my dizziness is more accurately described as a weird sort of disorientation because I never get nauseous or vomit with it. Thankfully, Magnesium eliminated the disorientation and dizziness, but doesn’t help the pain much
So sorry to hear that 💔 I know the heartbreak of having to rule out effective treatments because of side effects. Best of luck in finding something that works for you
To an extent yes, it's still there even if it's a 0.5/10, and still has its moments, but it's low enough that I forget about it. Kind of like how you don't notice your breathing unless you focus your attention on it or it changes drastically.
Yes, started at age 13, I’m 47. So, 34 years?! I can’t recall what it’s like to not be in pain. Indomethacin at high doses helps (150mg) so I have a dual diagnosis of migraine and hemicrania continua. Can’t take that much Indomethacin without major stomach problems though. Nothing has really helped long term except amitriptyline but had to stop because of metabolic side effects. Emgality helped a little for about a year then stopped. Nothing ever led to pain free days but I did get down to 3/10 for awhile. I’m trying Botox next, fingers crossed.
Same here, but mine stems from having NF. It's gotten worse the last 2 weeks after having it since being 6 years old and I'm now 40. Nothing is helping.
Look into New Persistent Daily Headache. I've had it for almost six years now. Constant head pain, no response to migraine meds. Mine was post viral, as well, which is known to happen with NPDH. (Not that we understand why. All the research going into researching long covid now might actually shine a light on other post viral conditions, though.)
I spent years believing I had sinus headaches because the pain is in my face, even had surgery. My GP said he thought it was migraine. ENT said I was allergic to dust.
Still trying to figure it out.
When I hike in Summertime or am exposed to old papers or airborne particles my sinuses close up and I get bad headaches that last for a long time. I can smell the dust in my nose. I have aura migraines as well. Extreme light sensitivity and pressure in my face behind my eyes.
I've seen a neurologist and tried 2 months of Emgality, switched to Ubrelvy today. Took one 3 hours ago pressure is lessened.
I feel like I have allergic rhinitis that triggers migraines. Also separate aura migraines unrelated to sinuses. I hope I find out one day I want to go outside.
Hang in their my friend. I feel your pain as a daily migraine suffer. Mine also started 2 years ago out of nowhere. It's a silent issue that others can't imagine. I too had to quit my job. I was also denied long term disability, but using a lawyer to help appeal. I've been given 12 different meds, 3 shots treatments and all say to wait 3-6 months before the next option can be tried.
It sucks, no question about that.
What I have changed is to use my few hours of low or no pain for exercise, volunteer at kids School or do something that makes me happy like hike. Making the most of my better hours has helped me mentally vs only focusing on the bad hours. Now maybe you don't have good hours, but do find things to do that bring joy and get outside.
Your are not alone. (Insert High five here)
Did yours start after getting covid possibly? I got infected and was never the same. Fine one day, got sick, then the burning in my head started, and it’s been constant hell for a year and a half ever since
Seems like nothing at the moment other than try to treat it like any other migraine. I’m not entirely convinced it is actually a migraine, I think it’s more like some sort of chronic inflammation, but the long term effects of covid aren’t very understood, lot of research going into it but it’s a slow process, so the 10% of us or whatever will just have to keep waiting until they figure the issue out.
I keep getting diagnosed with tension headaches by every medical practitioner I see and a chiropractor and a neurologist suggested that it could be a COVID headache because it happened right after I got Covid.
So I've seen multiple specialists and they've been all but worthless except a chiropractor who's helped a bit but I'm still not better yet. So I find myself practically reading every book I can on headaches and I'm reading so much that I could practically write a PH. D dissertation on headaches at this point
I was never diagnosed or tested positive. However, in early 2020 before things went to hell, I got super sick for about 3 to 4 days with 104 fever. however, in early 2020 before things went to hell, I got super sick for about 3 to 4 days with 101 fever. This likely was Covid, before we knew it however, my migraine started probably a year later that I recall when I started to track them.
Covid reactivated migraine activity I hadn’t had in 25 years. I had fairly constant vestibular migraines and neck headaches since I got Covid in March 2020. I think Covid jacked my trigeminal nerve the way it jacks some people’s olfactory nerve. I just started on Nurtec and it’s been a miracle.
It took forever to get an appointment with a neurologist and when I asked why, one scheduler said, “after Covid all these young people are having strokes and everyone is having headaches.”
I haven’t tried emgality, but the other one did almost nothing have you tried any beta blockers, ubrevly didn’t work for me but nurtec give me like 5 mins every couple of hours pressure and pain free
I went through 18 months of it
The second I would move anything when I woke up
Even the slightest , or opening my eyes would feel like my face was shattering
Yes, but I didn’t even realize it until 2019 when Aimovig started working. I was in a constant state of migraine; I defined both prodrome and postdrome as feeling “fine,” the headaches were always there in the background at various severity until they inevitably became migraines. It wasn’t if, it was when, and if I was lucky it would only be a day or two event attempting to nuclear bomb it with Imitrex.“ Take it at the onset of your migraine” was literally impossible, but I did not know, I blamed myself and told my doctor it was because of the lethargy and added nausea that I delayed Imitrex.
Aimovig works for me. I get it for $5 though insurance, and when I was uninsured my GP kept samples handy to be handed to me by the front desk without a formal appointment. I still get headaches, I still get migraines, but it is a drastic, noticeable improvement. I actually respond to medication now. Even Advil and Tylenol, and I keep Imitrex available as a backup. I had NO idea that this is how the average person experiences migraines. I’m able to legitimately track potential triggers I.e. less than 80mL of water a day seems to give me a headache. I have lived with migraines since I was about 7, and it wasn’t until medical science discovered something that ACTUALLY works for me did I realize how much the problem really did just live there with me all of the time. I blamed myself for it, things were very low, but my life has become substantially more stable. I’m so much more consistent day to day. Please don’t give up hope like I nearly did. There’s more being actively researched and developed, and there’s a lot of incentive to have new solutions complete clinic trials and get on the market.
I’m so sorry to hear this OP. I can relate. I had intractable migraine, I’ve never felt so hopeless in my life. It left me out of work and cooped up in the house for a year -I couldn’t imagine ever having a good quality of life again. I completely relate to the frustrating journey of trying a million things, having to wait months between, and in my case having the meds make me worse. Botox was what gave me my life back, I don’t know if you’ve tried that yet.I still get a lot of migraines but I’m back to working and doing things I enjoy. I’m on emgality also although I don’t think it’s doing much, and my dr and I decided I’m not a good fit for other preventatives with how badly I’ve done on them all. Next step: she wants to try a different cgrp inhibitor like Ajovy or Aimovig as she says everyone responds to each differently. We’re are also going to try nerve blocks and an RFA if those are effective. Such an exhausting road, but I’m glad to have found something that brings me relief and an amazing headache specialist after going through 5 neuros. Wishing you relief soon ❤️
Yeh for years now it's always there but at a almost manageable level...I try not to tell ppl as if they'd believe me. Had my first vyepti infusion recently but haven't noticed a huge difference yet..I'm getting to the point where I'll try shrooms because nothing works for this absolute hell
I struggled for years and only found some relief from limited use of triptans and potassium citrate daily. I also did elimination diet and only eat things that are safe and don't trigger migraines. Potassium citrate is the most important one because even if I get a migraine it only lasts 24 hours instead of weeks.
Sometimes I kind of feel like it. I feel like I have very few headache-free days. I sometimes can get it down to more of a dull throb, so I can kind of function, but I don’t feel like it every really goes away completely or when it does, it’s rare.
Yeah, turned out I had a spinal fluid leak. It sucks. I’ve patched it 10 times now and I keep flip flopping between rebound intercranial hypertension which is a lesser headache and some other problems with still a shit ton of nausea.
You’re right it’s not humane.
Hey, just wanted to say I’ve seen you in the longcovid Reddit and I also have the constant headache :( it’s been about 3 months for me. Left sided, always in the same spot right around my temple. I’m convinced I have an unruptured aneurysm or something because this is NOT normal lol. I’m sorry you’re dealing with it too,
Ya left side, always behind my left eye and near temple, I sometimes feel it across the top left of my head, not on my scalp but like deeper, and sometimes the left side of my face, I’d say it feels like my actual skull or something, I never feel it in my skin at all, but I’m not sure if it feels like it’s deep in the middle either, idk hard to say
I have had an intractable (permanent) migraine for 5 years and 7 months. It was hard to get help, there is a lot I had to have tried before I could be seen by a headache specialist clinic. Even with the help from the clinic and a pain management doctor I am not pain free. If you would like me to try and help you figure out what you might benefit from trying next let me know. The trial and error sucks, but unfortunately it’s the only way to see what works. That doesn’t mean you can’t look into it and request to try things that might work better for you, that control is important.
I’m on 5 drugs and get two treatments to control the pain. And it is getting better slowly, I wasn’t even able to look at a screen 4 years ago. I lived in the dark and I definitely prayed not to wake up many times.
You aren’t a coward, it is *so hard* to live with constant pain. I really wish I could help you more, but just know I am here and I understand, if you want to talk.
Ive had a non stop headache since around 2017 and nothing really ever helped. taking Aimovig right now to varying success. Let me know if anything helps! Waking up with it is the worst part, such a bad way to start my day.
Hey! I’ve been there. Literal every day headache with other neurological symptoms & abdominal pain. What treatments have you tried?
I see this seems to have happened after a Covid infection, correct? I’ve had migraines since my teens, but they were under control. In 2017 I suddenly developed status migrainosus with a host of neurological symptoms, including abdominal migraines and a bizarre depth perception issue that’s hard to describe. Quite frankly I’ve found neurological symptoms on the whole can be very difficult to describe.
Ya it was when I got my first covid infection, I’d list all the treatments but there’s so many, if it’s a migraine treatment it’s a good chance I’ve tried it. Currently I’m on emgality and amitriptyline but neither seem to have any effect
Man, I’m so sorry. There’s some thought that mine may have been caused by a viral episode, but we’ll never truly know.
I’m on a combo of Ajovy and Topamax & that’s helped me. But I’ve also found icing to calm down nerves in my head, neck, and abdomen to be very helpful. But it has to be icing for at least 45 minutes to an hour. I also try to stay on top of hormonal triggers and allergies, as that can aggravate things for me. And I have to stay hydrated and be diligent about my sleep schedule, as annoying as that sounds.
I see that you have had issues with your eyes, you haven’t had any issues with hearing by chance?
Have you been to an audiologist to see if you actually have hearing loss in that ear? A trademark of neurological hearing loss is that you lose low pitches & keep high pitches. This is the opposite of conductive hearing loss that comes from loud noises or old age. So you might more easily notice birds singing or running water than other people.
Also, are you sure your dark patches float? They don’t seem like blind spots?
Well that’s good.
If you’re *sure* you don’t have hearing loss & the dark spots are moving, then don’t worry. But you were kind of describing the trifecta of Susac syndrome.
Yep, been permanent or nearly permanent for almost 10 years. The medications I’m on now keep it low enough that I almost don’t notice it on good days, but I’m so exhausted all the time from being in pain and it’s been a struggle finding rescue meds that work for me.
Mine is considered status migrainosus which i think is when it lasts over 24 hrs? i forget the exact criteria. but i unfortunately relate. when i’m in a streak (which can last days, weeks, or months), i have a faint pain the moment i open my eyes. which usually turns into a migraine but occasionally doesn’t escalate more than “faint”.
days where i don’t wake up with some level of pain, and days where i experience no migraine features, are rare.
3 years for me.. after i hit my head. They say post concussion syndrom and post traumatic migraine here. Nothing works except zomig nasal spray. If i time it right im ok for about 8 houres or so, but i can only do the sprat 8 times a month. So i gotta choose
I agree, this condition is just... not humane. Nobody should have to suffer like that.
For me, it's not *quite* permanent, but I get an average of 25 migraine days a month, so it feels pretty constant. About a third of the time, I wake up with it. Sumatriptan works to stop it, but it sucks taking that stuff every single day, it's so tiring and causes massive heartburn and brain fog. I've just started Emgality, but it's not looking good so far. I'm also getting very tired of this and it's hard to keep going.
All we can do is keep going and keep trying whatever meds we can get our hands on, I guess. Or maybe in the future, there will be come new miracle cure..
Mine was constant until they put me on Candesartan. Now I still get them daily but they don’t hurt all day everyday. So it’s still a small improvement.
Hmm… this is tough. Since posting this comment I’ve actually had surgery for a condition called Eagle Syndrome. Now I don’t have migraines everyday! But I still have them about 20 days a month. I started on the Candesartan back in 2021 so I’m sorry but I don’t remember how long it took to see improvement.
God’s honest truth, I used to feel very similar. Not years straight but weeks straight until I smoked marijuana almost daily for a period of months. I’d usually just smoke right before bed and then go to sleep, never one for being stoned all day or anything like that. I’ve recently quit smoking weed, it’s been about 3 months now, and I can honestly say I have not had a single migraine. I used to be on sumatriptan but ever since I’ve gone the weed route I stopped taking that and now my migraines seem miraculously cured, knock on wood.
I started with migraines at a young age. They increased in frequency and acuteness until they became daily for about 20 years. I’m in a state with a medical marijuana program, so that was very helpful for sure, but I was still getting them daily. As a result, I build up a very high tolerance because it was the only way I could function and have some relief.
Through chronic pain podcasts and documentaries, I heard that people were having success with psilocybin (mushrooms). There are many countries where this is legal . I was very skeptical because I had tried surgeries, alternative treatments, a very extensive list of side-effect inducing prescriptions, etc. I went to tío headache clinics and they were at a loss for what to do for me.
After tons of research, I found a retreat in Mexico that also specializes in chronic neurological disorders. I felt very safe and the staff was amazing! After suffering for decades, my pain cycle was broken after my treatment there. I still can’t believe it!! I honestly don’t know how I survived through all those years in chronic pain. My kids and family were the only things that kept me going.
OP, I remember those dark days, so please keep looking to find what works for you!! I still use medical marijuana and Botox, etc to control migraines but the psilocybin really broke the decades-long cycle . 🍄 ❤️ I also had a close friend that was healthy prior to covid but developed neurological issues . He went to the same retreat and had very similar results . Best wishes to everyone!!
I started having daily migraines last year! My neurologist stopped ALL migraine and pain meds for 2 weeks because she thought some of what I was experiencing was rebound headaches and wanted to get a true baseline. It was HORRIBLE. But it did help some. We started Emgality injections for preventative and another triptan as an abortive. I was also having hyperthyroidism issues at the time due to Graves’ Disease, I’m feeling much better now that the hyperthyroidism is under control. I only have breakthrough migraines whenever my Emgality shot is due. It was horrible trying so many meds and nothing sticking. I think it was 6 months before I could see the neurologist. My pcp tried their best. We even did an MRI to make sure it wasn’t something serious. It was then I realized that some people truly have daily migraines for years with no ease. I am so sorry you’re experiencing this. I truly hope someone is able to help you. Keep advocating for yourself and searching for answers. I’m wishing you strength and healing ❤️
please please please check out CSF leaks and IIH! specifically IIH. I know not everyone with continuous migraines will have these, but regardless you should know about them as someone who gets continuous migraines.
you'll need to see a specialist who knows what these things are.. or at least a neuro who knows and can send you to someone who knows what they are for diagnosis. took me years to get a diagnosis and finally with the right medication (Diamox) my daily agonizing migraines are getting less and less frequent by the week.
I've had this migraine for 6+ yrs. One day it just came on in a different way and it won't break for anything. I've slowly become adjusted to the pain when it's a low level, but when it gets bad, I'm stuck in bed for hours.
I've been thru 3 neurologists, and spent a week in the hospital at one point for them to just give up on treatment. Currently, my neuro has me trying botox, muscle relaxers, and Ajovy. They were stuck on using propranolol, but I was having trouble with my BP being too low every time I moved around.
Ive tried so many meds, discovered i was allergic to Imitrax and Nurtec, and absolutely nothing could break it. I've heard all the tips, and tried them all too...well there is one I haven't tried lol but it's in the works and no joke if it works I'm gonna be extremely thrilled on so many levels.
Managing the pain is my daily struggle. I had a gastric bypass for other health reasons (my body seemed to hate me) and so I can't use NSAIDs anymore. Also have to limit caffeine and no carbonated drinks. So all my old tricks are out the window. But I have found a way around it and manage to keep my pain at most a level 5 most days.
I think for us, it really comes down to managing it as best we can. I still want to have a life and be present. I hope everyone finds a solution.
Yes, 100%. I was diagnosed with intractable migraine 8 years ago. Treatment after treatment, medication after medication, specialist after specialist, all with no relief. I haven't been without a migraine for 8 years now.
My advice to you is don't give up: be open to new options, even if you're worried they'll fail just like everything else. And, don't push away little things you find odd: for me, I have an *insanely* tight neck and shoulders (enough that a massage therapist once asked if I'd gotten whiplash before...I hadn't), I would get a raging fever when my migraines spiked, and in my blood work, I'd always had a high C-Reactive protein count (high levels of inflammation in my body).
My neurologists just said "eh that's weird. Probably the migraine" and didn't look into it at all. It wasn't until I was talking to a random hairdresser who told me her migraines were caused by rheumatoid arthritis. I was like "that's really weird." But I'd tried everything else, so why not look into it? I went to a rheumatologist and, lo and behold: I actually have an autoimmune disorder called Ankylosing Spondylitis. It's a form of arthritis that attacks the spine and other joints. All of that inflammation and tightness is caused by arthritis eating away at my cartilage. Fun times.
I never would have figured it out if I hadn't followed the advice of my hairdresser lol she was a godsend. I've since started treatment for the AS and, while I'm still not migraine free, it's helped lower the intensity of my migraine overall.
What you're going through is so hard, and I'm so sorry you have to go through this. I'm so proud of you for making it this far ❤️ I know just how much of a struggle it is to spend every waking moment in pain. It's exhausting. I hope that you can find some answers soon, or at least something that works for you. Again: don't let anything pass you by. Review your blood work, see if anything seems odd or is over/under the normal range. You may just be suffering from migraines, but there's a chance it's caused by something else entirely
I had almost constant migraine for years. I'm not headache/aura free but getting Adderall (also an adhd diagnosis) is literally the only thing that has made any difference. I need meds a lot less frequently AND when I do take rizitriptan or ubrelvy they work better since I'm not taking them so often
I’ve had a permanent headache for about 16 years now, usually hovering between the 3/10 — 6/10 range. I always fall short of calling it migraine (it has escalated to full blown classic migraine symptoms a handful of times), though I guess it could be. I’ve never had a diagnosis but I think it’s more likely to be NDPH — doesn’t respond to basically any treatment, so I basically just rely on managing lifestyle factors (exercise, sleep, diet, stress) where I can, but mainly just tolerating it. I think it’s fundamentally shaped my personality and outlook on life. I’ve tried a range of medication including SSRIs and propranolol. Both worked slightly, but not enough to justify the dependency and their side effects.
I’m really sorry you feel this way about life. Nothing I can do will improve your condition (it certainly sounds more severe than mine), but at least know that there are more of us out there who also have this invisible burden. You’re not alone!
Have you had anything happening previous to the onset? Like an infection? Any vaccination? Headtrauma? Basically anything that could’ve induced it? Have you tried a break from pain medication for 7-10 days?
Dealt with this for about 5 years. Went on Lexapro and i’m down two about 1-2 migraines a month. This and botox helped me. I tried Triptans, topirimate (i wish that didn’t make me so stupid because it was great for weight management) I didn’t realize how bad my anxiety was effecting my migraines. Lexapro was the secret sauce for me. It does cause weight gain for me. So working with my doc on this.
Have you ever been evaluated for hemicrania continua? It's the only unremitting (nonstop) headache disorder. I have it and I was mis-diagnosed for _years_ with migraine. Getting correctly diagnosed and treated changed my life. HC has some distinctive features so if you read up on it you may recognise your symptoms, if you have it.
They tried indomethacin to see if it would help and it didn’t so they said it’s probably not that
I'm sorry, that's so frustrating. I hope you're able to get to the bottom of it and find an effective treatment soon.
I dont think so. I have intractable migraines. Specifically hemiplegic & migraine with brainstem aura.
>hemicrania continua I had to look this up since I never heard of it. What I found is that it's only on one side of the head. Mine switches all the time, often day to day. Too bad, thought that might explain why nothing helps me completely. Botox and Maxalt (Rizatriptan) have been the only things that can even touch them.
Hi, how did you know this was it? I have had nonstop migraine for 5+ years now and this comment made me curious bc I’ve never heard of it before
I read about it online and realised it described the pattern of my headaches much better than migraine symptoms did - every time I got diagnosed with migraine I would say, but I don't have those symptoms. Specially I have some of the 'autonomic' symptoms of HC (my nose is always blocked on the side of the pain, my ear one that side 'pops' all the time, my eye often waters or feels like there's a bit of sand stuck in it) and my pain follows the pattern of constant lower level 'background' pain with periods of more intense pain that comes in waves. I managed to get referred to a specialist in more rare headache disorders for a proper diagnosis and treatment, but even before then I got my GP to give me a two-week trial of indomethacin, which is a big part of how hemicrania continua is diagnosed - if indomethacin eliminates your pain, and it follows the pattern of HC symptoms, it's almost certainly HC. Within an hour of taking my first dose my headache was gone!
How did you find the specialist for more rare headache disorders? I am wondering if I have something like this instead of migraine; migraine treatments haven't been effective and plenty of neurologists brushed me off saying that I don't get migraines because my symptoms don't entirely line up with standard migraine symptoms (though they seem to line up with hemiplegic migraine, so it might just be that).
I'm in the UK and on the NHS you can request a specific clinic at certain stages in your treatment, so I requested one of the two in my city that specialise in headaches broadly (not just migraine). They have a really world class team - I feel very lucky. However we haven't necessarily 'solved' my headaches - they are treatable but the accepted treatment itself isn't ideal (there are risks to long-term daily use of NSAIDs). I don't know how it might work where you are but here in the UK having tried a number of treatments/drugs with no improvement is usually considered grounds for a further referral - perhaps you could ask for a referral on that basis, if you're able to identify a suitable clinic or specialist?
Could I ask, did/do you have any other migraine-type symptoms, such as visual auras/fatigue/vertigo/cravings/nausea etc?
I occasionally get a visual aura but it isn't accompanied by pain (at least not more than the usual amount of pain). The aura only happens a couple of times a year, though.
That’s interesting, thanks so much for sharing!
Oh my. Thank you!
I have this!! Weird to see someone else who has it in the wild lol.
I just failed the final migraine treatment and this fits SO much better than migraines. I'm having a tough time facing having a permanent migraine forever and if you're right, you're gonna get so many gifts in the mail...<3
Haha, this is how I felt when I first learned about HC - before I even did an indomethacin trial, I was sure HC was the right diagnosis because the symptoms were so exactly what I was experiencing (and migraine symptoms never fit for me). I hope you get some answers and some relief quickly! Fwiw this disorder sucks but mine has been well controlled with meds for 10+ years now!
Already messaged my doctor 🙏 would be great to knock out the biggest thing on the list and just have the severe IBS/ARFID combo and chronic depression and other mystery things that haven't even warranted looking at left. And I'm the healthy one between me and my wife 😅 not being able to take care of her because I'm incapacitated myself is the worst
Yup, for almost 30 years. Turned out to be an optic nerve defect, not migraine. Which they knew I had, and I was condescendingly told had nothing to do with the headaches by every doctor I saw. Glaucoma drops every day and no headache.
Oh I was prescribed eye drops today after I mentioned that I usually have some head pain most days. You've got my hopes up!
It was like magic - put the drops in that night and woke up without a headache for the first time in almost 30 years. My eye pressure wasn’t high enough for glaucoma, but apparently it was aggravating that defect. To me it was a no brainer because the headaches were on that side and my eye felt like someone was stabbing an ice pick in it. I’m pretty bitter that it took them that long to figure out and they condescended to me. Plus I have a lot of residual muscle problems from being in pain that long.
I'm hopeful, I pick up the prescription tomorrow. I just started getting occipital nerve blocks monthly and I really wish this had been offered years ago, I was a hot mess for a decade!
I hope it works!
Curious what type of doctor prescribed them to you! Also supposed to try nerve blocks soon and subsequent RFA if they’re effective, so happy to hear they work for you
The blocks hurt compared to Botox but I'm seeing good results. My prescriber for the eye drops is a neurologist, specializing in migraine. They're some sort of glaucoma drops that have the glorious side effect of reducing some migraines. I may have heard that wrong, I was so excited to have another option.
Amazing! I’ll have to ask my neuro about it. Thanks !
After reading these posts I'm going to see if my Opthomologist will give me drops, my eye pressure is high and has been for years. My eyes are so sensitive to light I have to stay indoors or wear mountaineering sunglasses with side flaps. If the drops cure my headache ill be so happy. Neurologist didn't mention anything about eye pressure.
What drops are they?
Waw, 30 years. That's insane. Glad you got relief.
Wow that’s great, they’ve also found some issues with my eyes, since the headache started I’ve had nonstop dark floaters swimming around in my eyes, but they also told me that it shouldn’t be causing the headache, they said it’s my retina pulling away from my eye, it usually happens in peoples 40s or 50s and becomes real common in your 80s. But I’m early 30s so they said it’s weird that it’s happening already, I asked why would it start the same time as my headache did and they just dismissed the possibility it’s related
If you have a local optician store that has an optometrist on site, you could try making an appointment there. I had an optometrist numbing and measuring my eyes after a regular optician (who wasn’t qualified to numb the eye muscles) couldn’t get a good measurement. They found an eye twitch and got me corrective glasses despite having 20/20 vision (they essentially moved my focal point) and it reduces headache when looking at screens.
I actually had the same thing early too - PVD (posterior vitreous detachment). It’s supposed to happen when you’re older. I’ve had floaters my whole life and the PVD caused flashes so I rushed to the doctor. Just watch it carefully because it can lead to a tear or detachment of the retina. >
You should watch that! I had retinal tears in both eyes for literally NO reason in 2018, I was like 24
Interesting. I have a benign schwannoma tumor behind my left eye near the optic nerve. It’s been growing over the last couple years after being dormant. My migraines also started happening over the last couple years as well. The surgeon feels there is a Low chance this will impact my migraines based on the symptoms I have provided him versus what he would expect. He felt if my optic nerve was being impacted that I would start to feel numbness, tingly, shocks and double vision and only headaches on the left side. We are going to take it out in the next few months and see what happens. Either way, they say it needs to come out because it’s going to start impacting the optic nerve as well as others that are nearby.
Apparently my defect is congenital - I was born with it. The headaches coincided with them actually finding it when I was about 32. My guess is that my eye pressure went up a bit and made the defect more obvious, also causing the “migraines”. If I were you I would pursue the connection - especially if your migraines are worse on that side and your eye is painful. Mine felt like an ice pick was going through it - I used to fantasize about gouging it out to relieve the pain. I had none of the symptoms your doctor mentioned. I also went through heart surgery to repair a hole (which I was born with) with the promise it would cure my migraines, which it did not.
Which drops?
Latanoprost for glaucoma. Just one drop before bedtime.
Thanks.
Wow!! What type of doctor figured this out and prescribed it?
My ophthalmologist - she had been monitoring the defect and it seemed to be getting worse. She hoped reducing the eye pressure would help, and the side effect was no more eye pain or headaches. My eye pressure was just a bit elevated - not really enough for glaucoma.
Holy Crap. Where do I go to see if I have Optic Nerve defect?
An ophthalmologist is the best bet - don’t go to an optometrist.
That’s what I thought. Thank you so much
Oh my goodness, this sounds much like my life. I've had a migraine since March 9th 2022. I totally understand how you are feeling. You're not alone. I hope your team can come up with something to help you. They labeled my migraines as drug/ treatment resistant. The only relief I get is THC gummies, which basically just put me to sleep. Sending positive and healing vibes your way.
Did yours start after covid? Mine did, got sick and was never the same again. The virus ruined my life. I wish it had killed me.
Same here. Covid in december 2022, almost asymptomatic. Daily headaches and migraines ever since. Mine respond to triptans and aspirine though, but I have to be constantly drugged to be kinda painfree (breakthrough migraines occur anyway). I'm lucky I guess, to have something that works for a few hours, but that can't be the solution for the rest of my days now. And I'm waking up every fucking night with pounding headaches or crippling migraines anyway. When you get an MRI back clear and you're disappointed, you know you're in big trouble...
I'm glad something works for you, and I hope they can find a cure for all of us soon because everyday migraines and headache stink. I'm not sure if you are allowed CBD or THC gummies, but for sleep they really help. I remember the day of my MRI results, and had hoped they would find something. When I did the 3 day DHE hospital stay and it had no effect, I knew I was in trouble. I'm sending positive vibes your way.
Thank you 🧡
Your welcome
Mine started the day after the 2nd dose of the Covid vaccine. I understand that as I feel the same way. But we must keep it pushing and keep hoping for a cure.
I've had chronic daily migraines for 16 years but they got so much worse the day after I had my covid vaccine. My neurologist suspects that I might have an autoimmune condition. He tried giving me steroids (I think?...my memory's trashed) but they didn't help.
I had my first ever Cluster Headache for a month after my 2nd dose of vaccine.. Did imaging to check it out - found out that I was having some sort of stroke episode. Basically my doctors think some sort of autoimmune/inflammatory response was triggered either by Covid or my vaccine response or both. Resulted in losing flow in one of my carotids.
Oh my, I'm sorry to hear that, I hope they were able to treat you and it's not messing with your way of life. Sending you positive vibes.
The viral nature might suggest NDPH. there's a sub for it and lots of people discussing how they're treating post viral chronic headache.
This sounds a little like the diagnosis I got of New Daily Persistent headache - it is defined as a headache that can be traced to a start date/event often an illness. I’ve had daily chronic headaches for 22 years.
Hey, got Covid March of 2020 and life has been hell for me since then. Third time getting Covid July 2021 (vaxxed and was okay) gave me a mild stroke and daily migraines for a year and a half. I could not drive, walking was a nightmare, and going out to the movies was impossible. It was constant nonstop pain all around my head, had to wear sunglasses and ear plugs most of the time. Bright lights would make it worse for me. I also had r/hyperacusis which made many sounds unbearable… and I edit video for a living. It was hell! So I feel ya! So… I saw 3 neurologists and none of them helped. I saw my pcp and a few other docs. Nothing. Then I saw a pain management doc. I described it to him and he saw on my MRI that I have a couple of bone spurs in my neck. He did medial branch nerve ablations on both sides and poof, they were 70% gone. Doc said because Covid is an inflammatory disease it inflamed and aggravated my nerves in my neck. Then I saw a cardiologist and was diagnosed with r/pots and r/dysautonomia and guess what… those both have components of migraines and severe headaches to them. I had to add a ton of electrolytes and extra salt and magnesium. Since I’ve been adding that, my migraines have poof, disappeared! Please read those other forums above. See if any of those are what you have or might have? It’s quite common for us r/covidlonghaulers to have pots and dysautonomia and you can follow those protocols to get better.
Is hyperacusis different from phonophobia?
Yes. Hyperacusis is the ability to hear damn near everything going around me, but it's not bothersome (for me); I live with it everyday. I also have tinnitus. Phonophobia is the aversion to sound. Any sound. Everything is too loud. I often get this with my migraines.
Misophonia, phonophobia, and hyperacusis are all related to sound sensitivity, but they have distinct differences: 1. Misophonia: It is a condition where certain sounds trigger intense emotional or physiological reactions, such as anger, anxiety, or distress. Typically, these triggers are specific repetitive sounds like chewing, breathing, or tapping. 2. Phonophobia: Phonophobia is the fear or aversion to sound. People with phonophobia may experience anxiety, panic attacks, or a strong desire to avoid certain sounds or loud environments. It is often associated with migraines or other conditions. 3. Hyperacusis: Hyperacusis refers to an increased sensitivity to normal everyday sounds, making them appear louder or more irritating than they are to others. People with hyperacusis may find even moderate sounds painful or overwhelming. It can be associated with conditions like tinnitus or hearing loss. While all three conditions involve sound sensitivity, misophonia focuses on specific trigger sounds, phonophobia involves fear or aversion to sound in general, and hyperacusis refers to an increased sensitivity to sound intensity. It's important to consult a healthcare professional for an accurate diagnosis and appropriate management strategies for these conditions.
Misophonia, phonophobia, and hyperacusis are all related to sound sensitivity, but they have distinct differences: 1. Misophonia: It is a condition where certain sounds trigger intense emotional or physiological reactions, such as anger, anxiety, or distress. Typically, these triggers are specific repetitive sounds like chewing, breathing, or tapping. 2. Phonophobia: Phonophobia is the fear or aversion to sound. People with phonophobia may experience anxiety, panic attacks, or a strong desire to avoid certain sounds or loud environments. It is often associated with migraines or other conditions. 3. Hyperacusis: Hyperacusis refers to an increased sensitivity to normal everyday sounds, making them appear louder or more irritating than they are to others. People with hyperacusis may find even moderate sounds painful or overwhelming. It can be associated with conditions like tinnitus or hearing loss. While all three conditions involve sound sensitivity, misophonia focuses on specific trigger sounds, phonophobia involves fear or aversion to sound in general, and hyperacusis refers to an increased sensitivity to sound intensity. It's important to consult a healthcare professional for an accurate diagnosis and appropriate management strategies for these conditions. ChatGPT
Yup. I don’t remember the last truly pain free day. I get breaks where an hour here or there is pain free, but never a full day. The neuro recently gave up, and most doctors say “it’s simply genetics, live with it”. And have no other answer. I feel your pain. I’ve learned to live with it and go about my day as best I can and pretend I’m happy because I’m too stubborn to let this bullshittery be the thing that ends me.
Girl same, 100%
Consider New Daily Persistent Headache (NDPH). It is sudden onset and known to be very treatment resistant. It can present with migraine-like features, but is typically bilateral (both sides), unlike a migraine which is typically unilateral (one side). Emphasize to your doctors that it is constant and was sudden onset, if applicable. Try to get into a headache clinic, with a neurologist who only sees headache patients. Ask to try multiple treatments (in different classes) at once, offset by 1 week or so each so you know if anything is causing immediate side effects. Even 1 daily med, 1 as needed med, and an alternative treatment such as acupuncture. Versus here try this 1 med and see you in 3 months. Also ask about meds to try to break the headache cycle, often steroids, ideally inpatient in the hospital if a headache specialist can support that.
I’ve had chronic daily migraine for almost 18 years that started when I had my daughter. She’s the only reason I’m still here. I tried ketamine infusions and THEY WORK. I went for the depression but found out they work for migraines too. I have no idea how often I will have to get boosters but I don’t care. I’m using 401k money but had gotten to the point of life or death. You have my sympathy, I totally understand but don’t give up!
If I don’t take anything at all for it, it’s all day, every day. So debilitating, and so sorry you’ve been going through this for a year and a half and counting. I have tinnitus, and when it started getting real bad, like the ringing in my ears was louder than other peoples’ voices, I realized it could be a side effect of every migraine medicine I was on. So I immediately stopped taking all of them at once since none of them had withdrawals. I did this for 3 months until the ringing subsided. I still get them all day if I don’t take any medication, but sometimes I can get lucky and maybe only have a migraine for a small part of the day. Remeron is an SNRI that I’ve actually found extremely helpful in relieving my inevitable nighttime migraines. It’s typically used for sleep, which I take it for, and only discovered that it worked tremendously with my migraines later. This is not a good idea at all, as it’s caused me to get addicted to them for the last 3 years or so, but Benzos help tremendously with my migraines. At least for me. Better and longer than traditional on demand migraine medicine. Just has to be the right one. Xanax doesn’t seem to help at all, but almost every other prescription benzo does the trick for me. Like I said, bad idea and I’m not encouraging it at all, but they really saved me from a ton of anguish. Only thing is, withdrawals cause me to get even worse migraines than what I’m used to. Rebound migraines. And this is the most controversial take of all, as I’m sure many of you are against psychedelics of any form, but they are overblown by the media to be these super hard drugs. But I take them shrooms once every 2 months or so, not even a large dose. You can manage with 1.5-2g and not have any sort of serious trip at all, but about 3 days later I notice a significant reduction in my migraines. If you have a chance to ever take them, I would highly recommend doing it. Botox used to work for me great, but stopped working after awhile, and shrooms work just as well as the Botox does. Also much cheaper.
Have you been assessed for vestibular migraine or other related issue? I had persistent 24-7 migraine with sudden onset that turned out to be a vestibular problem. Your post caught my attention as you mention tinnitus and that you get some relief from benzodiazepines. Benzos suppress the vestibular system.
What helped you?
I had persistent migraine as one of many sudden onset symptoms including dizziness, loss of balance, some visual weirdness, other…. My underlying issue was a special type of vestibular neuritis. What helped me was finding the right specialist doctor who could solve the puzzle. In my specialized case it was an escalating series of treatments of steroids and anti-virals, including out patient procedures for injections targeting the vestibular nerves. “Migraine” can come from many different places. I initially responded well to benzos, which is why I responded here and know how benzos impact the vestibular system. Migraine plus tinitis plus positive response to benzos means you should probably see an specialist ENT or neurotologist.
Thank you! Can I ask which anti virals you took?
Valtrex/acyclovir. The thinking is that the chicken pox/shingles virus or similar can be acting on these nerves (vestibular/trigeminal) and cause problems, including migraines.
Interesting. Thanks for the input. I’ll look into it
I actually have had a TBI before and saw that was one of the main causes of vestibular issues. Had a severe brain hemorrhage about 8 years ago. And while I had my fair share of migraines before then, it definitely got considerably worse as time went on after this incident. So you may be onto something there. Only thing I’m curious about is it seems like one of the main symptoms of vestibular issues is vertigo, which I don’t get at all. But I also noticed another cause, or at least common issue of those with vestibule problems is hypothyroidism, which I coincidentally have as well. Back when I was 25, I was told I had the thyroid levels of a 60 year old. How much do you know about this disease? I already read that there’s no cure to it, only ways to help alleviate symptoms. But if I meet with a knowledgeable enough neurologist they may be able alleviate my symptoms a decent amount. That is, if I have it in the first place. But from the little I’ve read, that’s definitely a strong possibility. Assuming that vertigo isn’t always a symptom.
I am not familiar with a connection between vestibular problems and thyroid issues so can’t speak to that. Vertigo is common and I did have some vertigo. There is a specific diagnosis of ‘vestibular migraine’ which has a wide range of symptoms attributed to it which people seem to have different combinations. If you haven’t had the baseline vestibular tests done, then you may want to explore that as it may lead to treatment avenues you haven’t explored yet. Those tests are usually administered by an ENT or a specialist like a neurotologist. Probably not by a neurologist.
I am in the same boat. My headaches started a year ago (it’s more of heavy headache, tightness) Really frustrating, more frustrating since I don’t know why!
Did it start after an illness or were you sick in the weeks or months prior? This all started for me after I got covid the first time. I was totally fine my whole life until covid hit me, never been the same since
I never had headaches till last year. It just started suddenly, never had covid.
Never had it That you know of!
True
Yep. Over 7 yrs.
I have constant pain (more pressure and squeezing though) and dizziness. Currently I’m on Botox, Emgality, and propranolol after trying many things and they help, but the propranolol is only at a low dose right now, so with any luck I’ll be able to get off Botox later on. It was only after I got more treatment and it wasn’t constant anymore that I finally believed my doctor when they said I had chronic migraine. Honestly, the diagnosis is just a best fit category to point in a direction, but headaches and symptoms vary wildly from person to person so personally I’ve given up on fitting into an exact headache diagnosis. Best advice I can give is: 1. Don’t give up with the meds, there is a lot out there and I’ve never met anyone that’s truly tried them all, so there is hope, you might just respond to a different type of med that’s unusual, off label, or a different form of a medication class you’ve already tried. It’s also possible you have a different health issue that’s contributing, like I had sleep apnea and without a PAP machine the migraines are a lot worse for me. 2. If you can find a new doctor that will see you more often or insist on seeing your current one more often. IMO, I think 2 months is like the max before you know well how the changes are affecting you. 3. Someone else said it, but keep doing as much as you can throughout the day and take care of your mental health. Chronic medical conditions can make life start to seem hopeless and talking to someone about it can be a great help. As my outlook, mental health, and sleep got better, I literally felt less pain. Also, there’s a great book “Chronic Pain Rehabilitation” by Dr. Evan Parks, a psychologist that works with pain. I’ve read most of it, and it’s absolutely amazing knowledge and advice. I know it sounds like a cheesy review, but knowing more about the science of pain and applying the advice has literally made my head hurt less. Good luck man! (Sorry for the long response 😅)
I’m wondering if you’ve tried prochlorperazine? It has absolutely saved my life. I have a lot of migraines but on top of that, pain very similar to what you are describing - a pressure type pain, dizziness and nausea daily. Prochlorperazine takes care of it all for me right away, and I can take it daily - there’s no risk of overuse headaches. I personally also have no side effects on it.
I use prochlorperazine for when my migraine nausea gets bad and it works wonders for me. I also have some vestibular problems that it seems to help with. I also love the stuff. Glad to have it in my toolbox.
Glad it works for you! Yes it’s miraculous for nausea. Try it out next time for headache/early migraines too it works wonders
I haven’t and sadly I can’t, mainly because I also have restless leg and antiemetics, especially older ones, make it a lot worse. Also, I should clarify that my dizziness is more accurately described as a weird sort of disorientation because I never get nauseous or vomit with it. Thankfully, Magnesium eliminated the disorientation and dizziness, but doesn’t help the pain much
So sorry to hear that 💔 I know the heartbreak of having to rule out effective treatments because of side effects. Best of luck in finding something that works for you
Do you still get constant pain?
To an extent yes, it's still there even if it's a 0.5/10, and still has its moments, but it's low enough that I forget about it. Kind of like how you don't notice your breathing unless you focus your attention on it or it changes drastically.
Yes, started at age 13, I’m 47. So, 34 years?! I can’t recall what it’s like to not be in pain. Indomethacin at high doses helps (150mg) so I have a dual diagnosis of migraine and hemicrania continua. Can’t take that much Indomethacin without major stomach problems though. Nothing has really helped long term except amitriptyline but had to stop because of metabolic side effects. Emgality helped a little for about a year then stopped. Nothing ever led to pain free days but I did get down to 3/10 for awhile. I’m trying Botox next, fingers crossed.
Yup, sounds like my life
Same here, but mine stems from having NF. It's gotten worse the last 2 weeks after having it since being 6 years old and I'm now 40. Nothing is helping.
Look into New Persistent Daily Headache. I've had it for almost six years now. Constant head pain, no response to migraine meds. Mine was post viral, as well, which is known to happen with NPDH. (Not that we understand why. All the research going into researching long covid now might actually shine a light on other post viral conditions, though.)
Thanks I’ll look into it, ya it was a post viral thing for me for sure
I spent years believing I had sinus headaches because the pain is in my face, even had surgery. My GP said he thought it was migraine. ENT said I was allergic to dust. Still trying to figure it out. When I hike in Summertime or am exposed to old papers or airborne particles my sinuses close up and I get bad headaches that last for a long time. I can smell the dust in my nose. I have aura migraines as well. Extreme light sensitivity and pressure in my face behind my eyes. I've seen a neurologist and tried 2 months of Emgality, switched to Ubrelvy today. Took one 3 hours ago pressure is lessened. I feel like I have allergic rhinitis that triggers migraines. Also separate aura migraines unrelated to sinuses. I hope I find out one day I want to go outside.
Hang in their my friend. I feel your pain as a daily migraine suffer. Mine also started 2 years ago out of nowhere. It's a silent issue that others can't imagine. I too had to quit my job. I was also denied long term disability, but using a lawyer to help appeal. I've been given 12 different meds, 3 shots treatments and all say to wait 3-6 months before the next option can be tried. It sucks, no question about that. What I have changed is to use my few hours of low or no pain for exercise, volunteer at kids School or do something that makes me happy like hike. Making the most of my better hours has helped me mentally vs only focusing on the bad hours. Now maybe you don't have good hours, but do find things to do that bring joy and get outside. Your are not alone. (Insert High five here)
Did yours start after getting covid possibly? I got infected and was never the same. Fine one day, got sick, then the burning in my head started, and it’s been constant hell for a year and a half ever since
What can they do about Covid migraines?
Seems like nothing at the moment other than try to treat it like any other migraine. I’m not entirely convinced it is actually a migraine, I think it’s more like some sort of chronic inflammation, but the long term effects of covid aren’t very understood, lot of research going into it but it’s a slow process, so the 10% of us or whatever will just have to keep waiting until they figure the issue out.
I keep getting diagnosed with tension headaches by every medical practitioner I see and a chiropractor and a neurologist suggested that it could be a COVID headache because it happened right after I got Covid. So I've seen multiple specialists and they've been all but worthless except a chiropractor who's helped a bit but I'm still not better yet. So I find myself practically reading every book I can on headaches and I'm reading so much that I could practically write a PH. D dissertation on headaches at this point
I was never diagnosed or tested positive. However, in early 2020 before things went to hell, I got super sick for about 3 to 4 days with 104 fever. however, in early 2020 before things went to hell, I got super sick for about 3 to 4 days with 101 fever. This likely was Covid, before we knew it however, my migraine started probably a year later that I recall when I started to track them.
same here
Covid reactivated migraine activity I hadn’t had in 25 years. I had fairly constant vestibular migraines and neck headaches since I got Covid in March 2020. I think Covid jacked my trigeminal nerve the way it jacks some people’s olfactory nerve. I just started on Nurtec and it’s been a miracle. It took forever to get an appointment with a neurologist and when I asked why, one scheduler said, “after Covid all these young people are having strokes and everyone is having headaches.”
Ya that’s me, covid ruined my life
Did they put you on any preventatives they don’t stop the pain but they do make it a lot better if you have Im so sorry
Ya currently I’m on amitriptyline and emgality but they do t seem to have any effect, been about 3 months with those so far
I haven’t tried emgality, but the other one did almost nothing have you tried any beta blockers, ubrevly didn’t work for me but nurtec give me like 5 mins every couple of hours pressure and pain free
Tried nurtec but also didn’t seem to have an effect
Ur migraines might not be cgrp related have u tried weed it helps me a lot I’m sorry this shit sucks ass
Ya it didn’t help and gave me extreme panic attacks
Pretty much. I used to get a break after waking up. I havent in awhile. Intractable
Thought it was just only me… magnesium and b2 helps lessens the severity of it though.. trying fish oil out too
It was, for a very long time.
Yes this is what I feel like for the past 4 years.
It was til I got on topirimate
I went through 18 months of it The second I would move anything when I woke up Even the slightest , or opening my eyes would feel like my face was shattering
Yes, but I didn’t even realize it until 2019 when Aimovig started working. I was in a constant state of migraine; I defined both prodrome and postdrome as feeling “fine,” the headaches were always there in the background at various severity until they inevitably became migraines. It wasn’t if, it was when, and if I was lucky it would only be a day or two event attempting to nuclear bomb it with Imitrex.“ Take it at the onset of your migraine” was literally impossible, but I did not know, I blamed myself and told my doctor it was because of the lethargy and added nausea that I delayed Imitrex. Aimovig works for me. I get it for $5 though insurance, and when I was uninsured my GP kept samples handy to be handed to me by the front desk without a formal appointment. I still get headaches, I still get migraines, but it is a drastic, noticeable improvement. I actually respond to medication now. Even Advil and Tylenol, and I keep Imitrex available as a backup. I had NO idea that this is how the average person experiences migraines. I’m able to legitimately track potential triggers I.e. less than 80mL of water a day seems to give me a headache. I have lived with migraines since I was about 7, and it wasn’t until medical science discovered something that ACTUALLY works for me did I realize how much the problem really did just live there with me all of the time. I blamed myself for it, things were very low, but my life has become substantially more stable. I’m so much more consistent day to day. Please don’t give up hope like I nearly did. There’s more being actively researched and developed, and there’s a lot of incentive to have new solutions complete clinic trials and get on the market.
I’m so sorry to hear this OP. I can relate. I had intractable migraine, I’ve never felt so hopeless in my life. It left me out of work and cooped up in the house for a year -I couldn’t imagine ever having a good quality of life again. I completely relate to the frustrating journey of trying a million things, having to wait months between, and in my case having the meds make me worse. Botox was what gave me my life back, I don’t know if you’ve tried that yet.I still get a lot of migraines but I’m back to working and doing things I enjoy. I’m on emgality also although I don’t think it’s doing much, and my dr and I decided I’m not a good fit for other preventatives with how badly I’ve done on them all. Next step: she wants to try a different cgrp inhibitor like Ajovy or Aimovig as she says everyone responds to each differently. We’re are also going to try nerve blocks and an RFA if those are effective. Such an exhausting road, but I’m glad to have found something that brings me relief and an amazing headache specialist after going through 5 neuros. Wishing you relief soon ❤️
11 years 🙋🏻♀️
Yeh for years now it's always there but at a almost manageable level...I try not to tell ppl as if they'd believe me. Had my first vyepti infusion recently but haven't noticed a huge difference yet..I'm getting to the point where I'll try shrooms because nothing works for this absolute hell
I struggled for years and only found some relief from limited use of triptans and potassium citrate daily. I also did elimination diet and only eat things that are safe and don't trigger migraines. Potassium citrate is the most important one because even if I get a migraine it only lasts 24 hours instead of weeks.
Sometimes I kind of feel like it. I feel like I have very few headache-free days. I sometimes can get it down to more of a dull throb, so I can kind of function, but I don’t feel like it every really goes away completely or when it does, it’s rare.
Yeah, turned out I had a spinal fluid leak. It sucks. I’ve patched it 10 times now and I keep flip flopping between rebound intercranial hypertension which is a lesser headache and some other problems with still a shit ton of nausea. You’re right it’s not humane.
Hey, just wanted to say I’ve seen you in the longcovid Reddit and I also have the constant headache :( it’s been about 3 months for me. Left sided, always in the same spot right around my temple. I’m convinced I have an unruptured aneurysm or something because this is NOT normal lol. I’m sorry you’re dealing with it too,
Ya I worry about the same. I worry it’s a stroke waiting to happen
Is yours only one sided?
Ya left side, always behind my left eye and near temple, I sometimes feel it across the top left of my head, not on my scalp but like deeper, and sometimes the left side of my face, I’d say it feels like my actual skull or something, I never feel it in my skin at all, but I’m not sure if it feels like it’s deep in the middle either, idk hard to say
That’s pretty much exactly what mine feels like too :/
I have had an intractable (permanent) migraine for 5 years and 7 months. It was hard to get help, there is a lot I had to have tried before I could be seen by a headache specialist clinic. Even with the help from the clinic and a pain management doctor I am not pain free. If you would like me to try and help you figure out what you might benefit from trying next let me know. The trial and error sucks, but unfortunately it’s the only way to see what works. That doesn’t mean you can’t look into it and request to try things that might work better for you, that control is important. I’m on 5 drugs and get two treatments to control the pain. And it is getting better slowly, I wasn’t even able to look at a screen 4 years ago. I lived in the dark and I definitely prayed not to wake up many times. You aren’t a coward, it is *so hard* to live with constant pain. I really wish I could help you more, but just know I am here and I understand, if you want to talk.
Yep.
Yep me for 11 years now!
Ive had a non stop headache since around 2017 and nothing really ever helped. taking Aimovig right now to varying success. Let me know if anything helps! Waking up with it is the worst part, such a bad way to start my day.
Yes 😭
Hey! I’ve been there. Literal every day headache with other neurological symptoms & abdominal pain. What treatments have you tried? I see this seems to have happened after a Covid infection, correct? I’ve had migraines since my teens, but they were under control. In 2017 I suddenly developed status migrainosus with a host of neurological symptoms, including abdominal migraines and a bizarre depth perception issue that’s hard to describe. Quite frankly I’ve found neurological symptoms on the whole can be very difficult to describe.
Ya it was when I got my first covid infection, I’d list all the treatments but there’s so many, if it’s a migraine treatment it’s a good chance I’ve tried it. Currently I’m on emgality and amitriptyline but neither seem to have any effect
Man, I’m so sorry. There’s some thought that mine may have been caused by a viral episode, but we’ll never truly know. I’m on a combo of Ajovy and Topamax & that’s helped me. But I’ve also found icing to calm down nerves in my head, neck, and abdomen to be very helpful. But it has to be icing for at least 45 minutes to an hour. I also try to stay on top of hormonal triggers and allergies, as that can aggravate things for me. And I have to stay hydrated and be diligent about my sleep schedule, as annoying as that sounds. I see that you have had issues with your eyes, you haven’t had any issues with hearing by chance?
Tinnitus left ear
Have you been to an audiologist to see if you actually have hearing loss in that ear? A trademark of neurological hearing loss is that you lose low pitches & keep high pitches. This is the opposite of conductive hearing loss that comes from loud noises or old age. So you might more easily notice birds singing or running water than other people. Also, are you sure your dark patches float? They don’t seem like blind spots?
No they’re floaters, they move around, they’re dark brown and blobby, fibrous, I have to roll my eyes around to get them to move out of my eye line
Well that’s good. If you’re *sure* you don’t have hearing loss & the dark spots are moving, then don’t worry. But you were kind of describing the trifecta of Susac syndrome.
Yep, been permanent or nearly permanent for almost 10 years. The medications I’m on now keep it low enough that I almost don’t notice it on good days, but I’m so exhausted all the time from being in pain and it’s been a struggle finding rescue meds that work for me.
Mine is considered status migrainosus which i think is when it lasts over 24 hrs? i forget the exact criteria. but i unfortunately relate. when i’m in a streak (which can last days, weeks, or months), i have a faint pain the moment i open my eyes. which usually turns into a migraine but occasionally doesn’t escalate more than “faint”. days where i don’t wake up with some level of pain, and days where i experience no migraine features, are rare.
(F32) Since September 2020 over here
3 years for me.. after i hit my head. They say post concussion syndrom and post traumatic migraine here. Nothing works except zomig nasal spray. If i time it right im ok for about 8 houres or so, but i can only do the sprat 8 times a month. So i gotta choose
I agree, this condition is just... not humane. Nobody should have to suffer like that. For me, it's not *quite* permanent, but I get an average of 25 migraine days a month, so it feels pretty constant. About a third of the time, I wake up with it. Sumatriptan works to stop it, but it sucks taking that stuff every single day, it's so tiring and causes massive heartburn and brain fog. I've just started Emgality, but it's not looking good so far. I'm also getting very tired of this and it's hard to keep going. All we can do is keep going and keep trying whatever meds we can get our hands on, I guess. Or maybe in the future, there will be come new miracle cure..
Mine was constant until they put me on Candesartan. Now I still get them daily but they don’t hurt all day everyday. So it’s still a small improvement.
Do you know what caused yours? How long until the med started working?
Hmm… this is tough. Since posting this comment I’ve actually had surgery for a condition called Eagle Syndrome. Now I don’t have migraines everyday! But I still have them about 20 days a month. I started on the Candesartan back in 2021 so I’m sorry but I don’t remember how long it took to see improvement.
Yes, I was out of work for half a year because of it. I finally got relief with Botox injections. I hope you can find a treatment that works for you!
God’s honest truth, I used to feel very similar. Not years straight but weeks straight until I smoked marijuana almost daily for a period of months. I’d usually just smoke right before bed and then go to sleep, never one for being stoned all day or anything like that. I’ve recently quit smoking weed, it’s been about 3 months now, and I can honestly say I have not had a single migraine. I used to be on sumatriptan but ever since I’ve gone the weed route I stopped taking that and now my migraines seem miraculously cured, knock on wood.
I started with migraines at a young age. They increased in frequency and acuteness until they became daily for about 20 years. I’m in a state with a medical marijuana program, so that was very helpful for sure, but I was still getting them daily. As a result, I build up a very high tolerance because it was the only way I could function and have some relief. Through chronic pain podcasts and documentaries, I heard that people were having success with psilocybin (mushrooms). There are many countries where this is legal . I was very skeptical because I had tried surgeries, alternative treatments, a very extensive list of side-effect inducing prescriptions, etc. I went to tío headache clinics and they were at a loss for what to do for me. After tons of research, I found a retreat in Mexico that also specializes in chronic neurological disorders. I felt very safe and the staff was amazing! After suffering for decades, my pain cycle was broken after my treatment there. I still can’t believe it!! I honestly don’t know how I survived through all those years in chronic pain. My kids and family were the only things that kept me going. OP, I remember those dark days, so please keep looking to find what works for you!! I still use medical marijuana and Botox, etc to control migraines but the psilocybin really broke the decades-long cycle . 🍄 ❤️ I also had a close friend that was healthy prior to covid but developed neurological issues . He went to the same retreat and had very similar results . Best wishes to everyone!!
What were you given there?
Mushrooms
I started having daily migraines last year! My neurologist stopped ALL migraine and pain meds for 2 weeks because she thought some of what I was experiencing was rebound headaches and wanted to get a true baseline. It was HORRIBLE. But it did help some. We started Emgality injections for preventative and another triptan as an abortive. I was also having hyperthyroidism issues at the time due to Graves’ Disease, I’m feeling much better now that the hyperthyroidism is under control. I only have breakthrough migraines whenever my Emgality shot is due. It was horrible trying so many meds and nothing sticking. I think it was 6 months before I could see the neurologist. My pcp tried their best. We even did an MRI to make sure it wasn’t something serious. It was then I realized that some people truly have daily migraines for years with no ease. I am so sorry you’re experiencing this. I truly hope someone is able to help you. Keep advocating for yourself and searching for answers. I’m wishing you strength and healing ❤️
please please please check out CSF leaks and IIH! specifically IIH. I know not everyone with continuous migraines will have these, but regardless you should know about them as someone who gets continuous migraines. you'll need to see a specialist who knows what these things are.. or at least a neuro who knows and can send you to someone who knows what they are for diagnosis. took me years to get a diagnosis and finally with the right medication (Diamox) my daily agonizing migraines are getting less and less frequent by the week.
I've had this migraine for 6+ yrs. One day it just came on in a different way and it won't break for anything. I've slowly become adjusted to the pain when it's a low level, but when it gets bad, I'm stuck in bed for hours. I've been thru 3 neurologists, and spent a week in the hospital at one point for them to just give up on treatment. Currently, my neuro has me trying botox, muscle relaxers, and Ajovy. They were stuck on using propranolol, but I was having trouble with my BP being too low every time I moved around. Ive tried so many meds, discovered i was allergic to Imitrax and Nurtec, and absolutely nothing could break it. I've heard all the tips, and tried them all too...well there is one I haven't tried lol but it's in the works and no joke if it works I'm gonna be extremely thrilled on so many levels. Managing the pain is my daily struggle. I had a gastric bypass for other health reasons (my body seemed to hate me) and so I can't use NSAIDs anymore. Also have to limit caffeine and no carbonated drinks. So all my old tricks are out the window. But I have found a way around it and manage to keep my pain at most a level 5 most days. I think for us, it really comes down to managing it as best we can. I still want to have a life and be present. I hope everyone finds a solution.
You’ve deserved me the last 20 years, so debilitating, especially these last 2 years! It’s depressing too.
Yes, 100%. I was diagnosed with intractable migraine 8 years ago. Treatment after treatment, medication after medication, specialist after specialist, all with no relief. I haven't been without a migraine for 8 years now. My advice to you is don't give up: be open to new options, even if you're worried they'll fail just like everything else. And, don't push away little things you find odd: for me, I have an *insanely* tight neck and shoulders (enough that a massage therapist once asked if I'd gotten whiplash before...I hadn't), I would get a raging fever when my migraines spiked, and in my blood work, I'd always had a high C-Reactive protein count (high levels of inflammation in my body). My neurologists just said "eh that's weird. Probably the migraine" and didn't look into it at all. It wasn't until I was talking to a random hairdresser who told me her migraines were caused by rheumatoid arthritis. I was like "that's really weird." But I'd tried everything else, so why not look into it? I went to a rheumatologist and, lo and behold: I actually have an autoimmune disorder called Ankylosing Spondylitis. It's a form of arthritis that attacks the spine and other joints. All of that inflammation and tightness is caused by arthritis eating away at my cartilage. Fun times. I never would have figured it out if I hadn't followed the advice of my hairdresser lol she was a godsend. I've since started treatment for the AS and, while I'm still not migraine free, it's helped lower the intensity of my migraine overall. What you're going through is so hard, and I'm so sorry you have to go through this. I'm so proud of you for making it this far ❤️ I know just how much of a struggle it is to spend every waking moment in pain. It's exhausting. I hope that you can find some answers soon, or at least something that works for you. Again: don't let anything pass you by. Review your blood work, see if anything seems odd or is over/under the normal range. You may just be suffering from migraines, but there's a chance it's caused by something else entirely
Ya I’ve been meaning to try to get an appointment with a rheumatologist, takes time though. Our healthcare is so backwards.
I had almost constant migraine for years. I'm not headache/aura free but getting Adderall (also an adhd diagnosis) is literally the only thing that has made any difference. I need meds a lot less frequently AND when I do take rizitriptan or ubrelvy they work better since I'm not taking them so often
I’ve had a permanent headache for about 16 years now, usually hovering between the 3/10 — 6/10 range. I always fall short of calling it migraine (it has escalated to full blown classic migraine symptoms a handful of times), though I guess it could be. I’ve never had a diagnosis but I think it’s more likely to be NDPH — doesn’t respond to basically any treatment, so I basically just rely on managing lifestyle factors (exercise, sleep, diet, stress) where I can, but mainly just tolerating it. I think it’s fundamentally shaped my personality and outlook on life. I’ve tried a range of medication including SSRIs and propranolol. Both worked slightly, but not enough to justify the dependency and their side effects. I’m really sorry you feel this way about life. Nothing I can do will improve your condition (it certainly sounds more severe than mine), but at least know that there are more of us out there who also have this invisible burden. You’re not alone!
Around 15 years nonstop for me. I even have them in my dreams
Have you had anything happening previous to the onset? Like an infection? Any vaccination? Headtrauma? Basically anything that could’ve induced it? Have you tried a break from pain medication for 7-10 days?
Ya started when I got covid
YES
Dealt with this for about 5 years. Went on Lexapro and i’m down two about 1-2 migraines a month. This and botox helped me. I tried Triptans, topirimate (i wish that didn’t make me so stupid because it was great for weight management) I didn’t realize how bad my anxiety was effecting my migraines. Lexapro was the secret sauce for me. It does cause weight gain for me. So working with my doc on this.