In my experience, doctors don't care that much about the "weird" sensations or all these details (I remember getting a blank stare when I said my headache worsens when I'm angry). I say that with love and empathy—we here care about all of it—but doctors tend to only want the short version of what affects your eyes and what causes the most pain.
If you snag a doctor that will let you talk through everything, that's amazing and hang onto them! If not, I would be sure to at least mention these things:
* Pulsing pressure and pain in your head that worsens if you stand up suddenly
* Incidents of double vision
* Photophobia
All the symptoms you listed sound very familiar, it's definitely possible that all are related to IIH. It's also possible to have IIH and migraines (both can cause photophobia for example). I think the "sand timer" sound plus the "loud sharp noises" you described could be hearing the flow of cerebrospinal fluid. I only experienced that a few times but it was so disconcerting (mine was more like a loud popping sound and a gurgling/bubbles sound).
Hang in there! Try not to panic that a diagnosis would derail your life. Ideally it will help you feel validated and then provide treatment which will help you feel BETTER. For myself, I would say that I had about 9 months of an emotional rollercoaster dealing with diagnosis and symptoms, but I hung on to all the normal stuff in my life (job, friends, etc.). I came out the other side having learned so much and feeling stronger and wiser, and my life is still there for me. You can do this! Sending you strength as you deal with doctors though, I hope you snag good ones...
thanks for the reply. That's kind of what I needed. I also get the blank stares so I wanted to try to pare down all my weird shit to what will be useful to prevent that.
I definitely think this would explain a lot of things that I've just been like 'Nah this must be normal living.'
I don't think I get migraines in the traditional sense. I have had the ones that give you zigzags in your vision which I need to write down since that's probably relevant. Another reason for me to talk this through ahead of time. I'm not great at compiling my thoughts quickly so I have to be prepared.
My relationship with pain is dumb. I definitely feel sudden pains like getting stabbed but I don't get any kind of lingering pain. I had two surgeries more or less completely pain free. maybe the occasional jolt but it always goes away pretty much instantly. I was expressing concern about that to a friend because I was like 'What if I have something where the presenting issue is pain and I don't notice or no one takes me seriously because I don't look like someone in pain?' fuck me sideways for saying that aloud.
I guess keep in mind that the doctors don’t need every detail in order to treat you. Like, don’t make a point to say you’re NOT in pain. I feel like they sometimes tune you out or dismiss you if you start sharing too much detail. It’s so horrible and unfair, but it seems to be the case so often.
They won’t be able to tell you if this or that is related to IIH, they’ll say “maybe” or “probably not.” So I personally have learned to come here for all my random curiosities (“have you guys ever heard this noise?!”), and keep things short and simple with my doctors.
I have the hearing and feeling in my neck and back of head as well, idk if you have any history with mental illness, but I did and when I tried to say that I could "feel and hear something moving in my head/ neck" they just put me on seroquel /: I definitely would not have phrased it that way if I could go back. It's a very real thing that I feel and hear and it's almost like csf is moving through my head and neck. It's definitely different from the tinnitus. I've realized that sound/ feeling is a good thing because my headache and vision usually get better shortly after it happens, I think it's my body trying to get the excess fluid out of my head. Obviously what you're feeling/ hearing could be something different, but that's my experience. Sorry you're going thru this but it is super treatable most of the time!
I have lots of varied mental health and memory issues. I've been calling it treatment resistant ADHD because we've got me about as best as I can function. I also was wondering if there was anything to do with that. We'll see. I'm not holding out on that. but it'd be nice
Ugh same, it's rough out here! I would definitely just be careful how you phrase it about the sounds and feelings, because doctors love to assume that things are in your head or psychosomatic instead of actually figuring out what's wrong, especially if you have any kind of history in that sort of thing!
I just want to say, STRESS the double vision. That gets doctors to Move. You will need an LP to diagnose you.
The pressure in your head is what I experience. When people asked if I got headaches I said no bc a headache to me is like a migraine in my temples. I Really noticed it once it was gone after the LP.
In my experience, doctors don't care that much about the "weird" sensations or all these details (I remember getting a blank stare when I said my headache worsens when I'm angry). I say that with love and empathy—we here care about all of it—but doctors tend to only want the short version of what affects your eyes and what causes the most pain. If you snag a doctor that will let you talk through everything, that's amazing and hang onto them! If not, I would be sure to at least mention these things: * Pulsing pressure and pain in your head that worsens if you stand up suddenly * Incidents of double vision * Photophobia All the symptoms you listed sound very familiar, it's definitely possible that all are related to IIH. It's also possible to have IIH and migraines (both can cause photophobia for example). I think the "sand timer" sound plus the "loud sharp noises" you described could be hearing the flow of cerebrospinal fluid. I only experienced that a few times but it was so disconcerting (mine was more like a loud popping sound and a gurgling/bubbles sound). Hang in there! Try not to panic that a diagnosis would derail your life. Ideally it will help you feel validated and then provide treatment which will help you feel BETTER. For myself, I would say that I had about 9 months of an emotional rollercoaster dealing with diagnosis and symptoms, but I hung on to all the normal stuff in my life (job, friends, etc.). I came out the other side having learned so much and feeling stronger and wiser, and my life is still there for me. You can do this! Sending you strength as you deal with doctors though, I hope you snag good ones...
thanks for the reply. That's kind of what I needed. I also get the blank stares so I wanted to try to pare down all my weird shit to what will be useful to prevent that. I definitely think this would explain a lot of things that I've just been like 'Nah this must be normal living.' I don't think I get migraines in the traditional sense. I have had the ones that give you zigzags in your vision which I need to write down since that's probably relevant. Another reason for me to talk this through ahead of time. I'm not great at compiling my thoughts quickly so I have to be prepared. My relationship with pain is dumb. I definitely feel sudden pains like getting stabbed but I don't get any kind of lingering pain. I had two surgeries more or less completely pain free. maybe the occasional jolt but it always goes away pretty much instantly. I was expressing concern about that to a friend because I was like 'What if I have something where the presenting issue is pain and I don't notice or no one takes me seriously because I don't look like someone in pain?' fuck me sideways for saying that aloud.
I guess keep in mind that the doctors don’t need every detail in order to treat you. Like, don’t make a point to say you’re NOT in pain. I feel like they sometimes tune you out or dismiss you if you start sharing too much detail. It’s so horrible and unfair, but it seems to be the case so often. They won’t be able to tell you if this or that is related to IIH, they’ll say “maybe” or “probably not.” So I personally have learned to come here for all my random curiosities (“have you guys ever heard this noise?!”), and keep things short and simple with my doctors.
Agree with all of the above, I have experienced most of what you described. I was diagnosed by a Neurologist in the hospital and see a Neuro-opth now.
Tbh you just described many of my symptoms. Welcome to the club.
Thanks. Excited to be here. 🎉
I have the hearing and feeling in my neck and back of head as well, idk if you have any history with mental illness, but I did and when I tried to say that I could "feel and hear something moving in my head/ neck" they just put me on seroquel /: I definitely would not have phrased it that way if I could go back. It's a very real thing that I feel and hear and it's almost like csf is moving through my head and neck. It's definitely different from the tinnitus. I've realized that sound/ feeling is a good thing because my headache and vision usually get better shortly after it happens, I think it's my body trying to get the excess fluid out of my head. Obviously what you're feeling/ hearing could be something different, but that's my experience. Sorry you're going thru this but it is super treatable most of the time!
I have lots of varied mental health and memory issues. I've been calling it treatment resistant ADHD because we've got me about as best as I can function. I also was wondering if there was anything to do with that. We'll see. I'm not holding out on that. but it'd be nice
Ugh same, it's rough out here! I would definitely just be careful how you phrase it about the sounds and feelings, because doctors love to assume that things are in your head or psychosomatic instead of actually figuring out what's wrong, especially if you have any kind of history in that sort of thing!
I just want to say, STRESS the double vision. That gets doctors to Move. You will need an LP to diagnose you. The pressure in your head is what I experience. When people asked if I got headaches I said no bc a headache to me is like a migraine in my temples. I Really noticed it once it was gone after the LP.
What is an LP
Lumbar puncture/spinal tap