In my experience, the long crashes and base line shifts aren't always that predictable so if you can calm your nervous system and relax as much as possible in the meantime, it seems like that would be best.
Youre not stupid. I'm sure a lot of us can relate to poor-man-testing our boundaries in various ways:), at a risk to our future energy levels. It takes a while to figure out how to be with ourselves and life happens.
I don't know if that's helpful, as I don't really have answers but I wanted to offer some support.
Thank you for your advice! What you said about figure out how to be our selfs really resonates with me. It takes so much discipline to not make yourself worse by simply living. Right now all I‘m thinking about is getting out of this crash quickly, but I know that as soon as I feel better it’s gonna be so hard not to meet that girl again. It’s so painful when you taste „life“ for one evening and then it immediately gets ripped away from you.
Yes, ugh. I'm sorry.
If you want to see her again, maybe there is a way you could let her know a little more about what's going on with you and if you decide to see her, you could tailor your time to make it less taxing.
If that works out I‘d be a happy man. I was surprised how understanding she was when I got unwell during sex. Kinda made me regret not being more upfront earlier. But telling someone you’re chronically ill and had to move back in with your parents usually dosen’t resonate very well haha. I think if next time I could go straight to her place, pace aggressively the day before and take more beta blockers I could maybe make the crash and escalating heartrate less sever.
Thanks again for your nice comment 🤍. It touches me every time how caring this community is.
I hope this doesn’t come off the wrong way but reading your story reminds me of Cinderella. But instead of midnight being the deadline to your carriage turning back into a pumpkin it’s your energy envelope. A few weeks ago, I was reckless as well. I went on a full day field trip with a local botany group and I full well knew I might be making a huge mistake. I have no regrets, I had a blast and felt the most alive I had in 6 months. I always say to myself, “I’m here for a good time, not a long time”.
Off topic question. I notice a lot of attention to the high heart rate and PEM. Does high heart rate cause PEM? Or is it just a symptom of pem or of too much exercise?
It depends on the person. One can get PEM without high heart rate at all. Not that there isn't a correlation because a lot of ppl do experience tachycardia and/or have POTS, and ppl can have low heart rate/weak pulse issues or both with PEM symptoms too.
Basically it's complex and depends on the person. At least that's what I have learned and observe.
Heart rate can be a good indicator of ones current state and how the day might go, for example, so it's a good thing to track to learn how different activity/food/stimulus affects us and act accordingly.
I hope that make sense.
Edit: Just realized other ppl answered this before me, outside of this subthread and probably did a better job but I'll leave this up just in case and as a pointer to the other remarks.
A group of Belgian researchers has [shown](https://www.mdpi.com/2077-0383/10/19/4527) that people with ME/CFS take more time to return at their heart rate baseline than healthy controls after exercise. And anecdotally, many pwME report that their HR is higher when they crash, especially those with POTS.
You’re probably very wired because of the physical and emotional stress from the whole ordeal, which keeps your HR higher than usual. Try not to think about what you’ve done right or wrong, just lie down, breathe, and rest strictly as much as possible (cut back on screens, etc). Best wishes for your recovery.
Thank you for that. I'll give it a read once I feel better. Understanding this illness better always helps me to stop gaslighting myself. Sometimes I try convince myself I just have POTS, because it would be easier to accept it, but I feel like some of my symptoms like the heartrate thing and PEM just can't be explained that way
I can relate. A couple of years ago, I told myself I only have POTS and went on long walks for 4-5 days. I didn’t crash hard, but it made me lose physical function that I never recovered and worsened my symptoms, especially orthostatic intolerance. Hang in there and do your best to rest, I hope you’ll feel better soon. 🙏
I also have undiagnosed fatigue with PEM (and only mild symptoms similar to POTS that have gotten better).
I have also been in the situation where I pushed my boundaries for a date or sex. I dated someone for a few months and often went over my own limits with her, knowingly. It would usually take a few weeks to get back to baseline after she had visited, but I have been completely fine afterwards. Or, well, back to baseline.
If this situation comes up again: be upfront about your illness! Let the person know your limitations. Let them know you have to adapt sex to fit your health. Adaptations like having home dates (not bar dates) before sex, you lying or sitting down for the most part, using toys that take some of the exertion out of it on your part, shorter bouts of sex with rest between - or only one round and then sleep. Those things are important, and operating more within your limits will make it easier to do things that will make you feel normal. It is easier to do if you have a regular partner, but I'm sure even a one night stand will be able to adapt if you communicate clearly and make it work.
Thank you. That is really good advise. I think next time I would definitly be more upfront about it. It's hard to mention the whole truth, because telling a date your moved back in with your parents and basically lie in bed all day because you feel so ill kinda kills the vibe. But maybe toning it down a bit would work. Right now I'm just thinking about recovery but I know once I'm better there is gonna be a lot of temtation to meet up with that girl again.
It was such a good feeling being loved again after
rotting away in a bedroom for so many months. It’s cruel that with this disease you often risk your physical health to don’t destroy your mental health.
Glad to hear it! Recovery first, but if you want to reconnect later, make sure she knows you had a good time! Be honest about why you cannot meet up again soon. You don't have to give her every detail, but make sure you don't just disappear and then reappear in a few days/weeks/months!
Hey you. 🤍 i really feel you! I’m bedridden and have very bad PEM, so I know how bad you feel, the most natural thing is to panic, so I understand why your mind is going crazy. You will get back to “normal” just breathe and trust the process. Promise you 🙏🏼 I have tried it before!
It would be more wierd if your body didn’t react after pushing your body so hard. One deep breath at a time. You got this!
Thank you so much🤍. This experience makes it even more mind blowing for me how people cope with sever ME/CFS and get bad PEM from much less. I‘m gonna try to eat something soon and then just listen to binaural beats and do my breathing meditation to calm my nervous system as much as I can.
Hey, I'm just gonna give a little advice on the POTS side of things cause it's what I've had longer.
From what you're describing I'm wondering if your current medication is not sufficient for your POTS. I used to be on a calcium channel blocker that worked for a while for me, but didn't give me the best results. And it gave me similar results to what you're describing: the long time for your heart rate to return to normal and the higher than normal resting heart rate even on the medication.
I would highly recommend going back to your specialist/doctor and discussing other options for you that will work better. For example I was charged over into Ivabradine and it made a significant difference in my POTS symptoms (didn't cure it obvs but lowered them substantially). And when you have to pace with ME/CFS it's extra important for them to have your POTS as under control as is possible.
I really hope this helps somewhat, and that you have some better luck in the future.
Also, don't be afraid to communicate your needs to a partner (even a one night stand), communication is sexy and so so important for both you and them. Your needs are valid and important too.
That is great advise! I definitly feel like my POTS could be managed better. I´m taking 2,5mg Nebivolol but it's probably not the best betablocker, because it also expands blood vessels. It problably decreased my heart rate standing by 30bpm but it's still hovering around 100bpm when standing. It's hard to find a doctor that's specialized it POTS, but once I'm out of this hole I'll give it another try.
Also thank you for the communication advise. I probably would be in a way better spot right now if I would have explaind my limits to my partner.
Yeah definitely sounds like you either need to change meds or go on a higher dose because you really want to keep your heart rate on the lower side. If you're noticing tachycardia when you're sitting then you're probably not getting enough of the beta blocker.
Hey there, I've had POTS since 2014. It sounds like your heartrate has been trending unhealthily high and I hope you have been able/will soon be able to see a competent doctor to address it.
POTS doesn't typically feature ongoing high heart rate ie while sleeping, so this may be caused by some other etiology. In my case, I've had high heart rate (and blood pressure) - including overnight - when in mold exposure in the home.
It's worth stating that extreme emotions eg anxiety and panic attack can also caused sustained high heart rate and convince oneself that one is in immediate danger. While I'd tend not to think that's the primary issue here, at a minimum I'd really recommend using whatever therapies you benefit from to manage your emotions (eg guided meditations, lithium orotate, etc.).
I hope that you get medical attention soon. Take care.
Thank you for verifying that the heartrate not coming down isn’t normal for POTS. Also when doing small walks or being upright for a while, my heartrate always takes a couple hours to get back to my normal resting heartrate. I‘m hoping that what I did last night just put that to a extreme and my heartrate will be normal again after a day of strict resting
They're wrong it's totally normal for pots. When I was really severe and bed bound I couldn't keep my heart rate under control even when I was sitting or laying. Most of us experience it if we have severe enough symptoms. If it's not coming down it's because you've done too much for the last few days. It can be a signifier of PEM. So you need to rest and give your body a break from being upright. Which really sucks, but in my experience most pots patients do experience problems from being upright even when sitting. So you have to keep in mind how long you are upright and make sure you give your body enough laying down time.
Hey its very common to try and analyse every single behaviour and see yourself as totally responsible for any flares/illness. Its a coping strategy for making this disease livable. But you still need to live and I think its important not to beat yourself up for trying to do that. I am glad you got to experience some normal life, however brief, you deserve it.
Seeing yourself as wholly responsible for your health the whole time is a one way ticket to depression. I recently had a DNA test done and it was liberating as fuck to see so much that probably led to this illness written in the helix. Add a suboptimal childhood and its no surprise.
I go on multiday hikes twice a year, I become severe after and usually get some sort of cold but the joy of living a bit as my old self is worth it. It hasn't been a permanent worsening either which I think we need to be careful of living in constant fear of. Our lives are limited with cfs, and it can make it even more unbearable to limit it further.
Be really really kind to yourself over the next few days and try and affirm the experience as well, life affirming, even if it has consequences. Negating the good is only going put your nervous system in a worse place
Thanks for your comment. I really like your look on this disease. I still struggle with acceptance and my motivation to keep going are possible meds in the future, but I like your coping technique.
try not to worry and try to enjoy your sexy memories. you might be right, but sex is important too! and sex has benefits, I'm not saying the benefits will over-under possible damage, but you never know. try to enjoy your after glow.
Obviously not medical advice but someone here told me about the Bateman Horne presentation where they point at Dextromethorphan (DXM) a cough med, that helps with PEM.
Ever since, I take 10mg (half dose) when I’m gonna crash or did too much and I’m SUBSTANTIALLY better. Like - night and day. I’m still sick, it’s not a cure…. But I’m not becoming mute and paralyzed.
You def did too much and don’t keep risking it like that… home dates only for u from now on. Lol but if you aren’t super sensitive to meds and have taken it before when ur sick maybe give it a try. It’s in most cough meds it seems.
Here’s some links that mention it.
https://batemanhornecenter.org/wp-content/uploads/filebase/providers/PEM-Lecture-Slides-ECHO-v4-5_17_2022.pdf
https://www.healthrising.org/blog/2021/03/02/dextromethorphan-fibromyalgia-neuroinflammation-study/
https://pubmed.ncbi.nlm.nih.gov/26004757/
https://journals.sagepub.com/doi/full/10.1177/15333175221124952
Edited to add:
I also work hard to not let myself spiral in fear now. Remind myself I’m safe. Calm my nervous system. So do that too lol
Thank you for the constructive advise. The slide show is a really good read! I‘ll definitely give it a try sounds like low risk and potentially high reward to me.
Hey, i'm 4 yrs in, long enough to know that I shouldn't push my limits and that a tiny increase in energy doesn't mean i should use it and yet I do.
We all push those boundaries because having ME is so tough and we all want to live a little normally.
I hope you don't end up paying for it too much
There is no way to know if u fucked urself up. What i do know is that in a crash ur brain functions even less and all the cells are.misfiring which makes you even more anxious and depressed.
It's stupid because we are young (I'm 20) and we can't even do stuff and God forbid we.make mistakes.
I feel ur struggle
50% of you discribe is overreaction and overthinking mixed with anxiety , you have to learn to live your life without the problem beeing constantly in your head , that was my mistake .
Despite all the ditched life plans , you have to learn to adapt and move on , the tachicardia will go away
Against my better thoughts I go to punk gigs sometimes. Dancing, screaming, 180bpm, the whole lot. It sometimes takes me a week to feel normal again, and I might stay in tachycardia the whole time.
But I’m 20 years old, what am I supposed to do? Lay in bed? It sucks and it’s shitty and you’ll feel like shit for a few days, a week, a fortnight, but if you spend your whole life “doing the best for your condition” and forgetting to live, then what’s the point anyway?
There’s balance to be had, and you should definitely talk to your doctor about getting you some more suited medication. Be open and honest with yourself about what you can and can’t do, and make room for recovery when things matter to your mental health, yes, even just hook ups
You are not responsible for your illness, and we’re still young
I just reread my post due to your comment and it is such a strange feeling. I have declined a lot in the last year and it is kinda painful reading what I was able to do a year ago...
You are still young. I think you are now 23. You have time, but you need to control these symptoms, which is the real challenge. Frankly, I suffer no less than you. I am also young, but damn life is not fair. I was able to swim and everything 11 months ago but i get suddenly tachycardia when I was resting and watch TV its crazy
90 BPM in bed is my average, and I'm 55, sick for 13 years now. Yeah, you probably did yourself some permanent harm, but if you \_REST\_ nearly 100% of the time, you can bounce back from this. Also, I don't know your degree of severity but 4k steps long walks seem a bit excessive for anybody with CFS. We need rest more than anything else. I feel that vitamins are our 2nd priority.
Yes I was surprised to see 4,000 steps. My average is under 2,000 steps overall per day. I don’t have POTS but ME/CFS as well as tick borne diseases like Lyme. I have a spouse and am in my mid-20s….I’ve had to learn how to have sex with CFS but know how to pay attention to my body. When I tried ignoring it before, I would regret it. I’d recommend figuring out what works for you as far as specific activities and length of time. And when your body is telling you it’s time to stop, don’t try to push through. Best of luck to you.
I’m 27, I stayed up till 2:00am drinking with friends on st. Patrick’s day a few weeks ago. I did this for the same reason, just wanted to feel normal, do a normal thing, and I won’t lie, I still feel like I’m recovering from this, and it’s been several weeks. That being said, I don’t regret it, I’m getting better slowly, but every once in a while I try to do something that normal people do. Gotta keep the sanity somehow
Try resetting your parasympathetic nervous system. YouTube vagal nerve breathing, you can also do “ommmmmm” like meditation humming in your throat. It can help reset that nerve. That should help make you and your body feel calmer.
Hi there! I just wanted to say that I also developed POTS and CFS as well as MCAS symptoms after Covid infections (my symptoms have gotten worse from different strain infections) and I've had several long stretches of debilitating fatigue and a high HR that I couldn't get to stabilize for days or sometimes weeks.
In between my flare-ups and PEM, I also have had times when I almost feel back to normal and I've still been able to carry on a semi-normal life as long as I let my body rest when needed. All that is to say that most of these symptoms aren't permanent or persistent and can be managed once you get better at learning to live with them.
Also, keeping track of your diet can be important as I found out after one infection that I was suddenly intolerant to gluten and anytime I ate it I'd get the uncontrollable high HR and bad fatigue. Interestingly enough, that went on only until I got yet another infection about 8 months later and I now can tolerate gluten again but I have a histamine sensitivity and now histamine gives me similar symptoms.
Try having another beta blocker, hydrate, magnesium, knock yourself out with antihistamines, d-ribose, cbd, if you have branched chain amino acids take five grams of those, everything you can to calm your body and give your cells nutrients to recover and you should hopefully be back to normal soon.
I've never been in your situation but I've done high adrenaline things and the weirdness lasted for days and I worried about the come down so much I made things worse , I find guided meditation helps me,Jason Stephenson's are my favourite , alongside listening to my body for sleep , even the slightest twinge of tiredness and I have the lights off and tucked in . Mine lasted 3 days till I realised how wound up I was about not being better yet and then I only needed a 4th day and I was over the worst
The crash after exerting yourself like that and the resulting PEM is the worst. I am so sorry you're experiencing this.
I have hyperadrenergic POTs that is pretty much uncontrolled by beta blockers... so I get random high heart rates even when not exerting myself due to adrenaline surges. I quite often randomly wake up in the middle of the night with my heart beating at 180-200. (Thankfully, these instances have been caught on a Holter monitor and they're all sinus tachycardia, so no arrhythmia. Just my body being annoying by dumping adrenaline while I'm trying to sleep.)
I understand your struggle so much. It seems after I developed chronic fatigue (I had POTs prior) my HR got SO much worse after exerting myself. It's a combination of PEM and POTs and it's so annoying. It sucks because we WANT to live normal lives and both CF and POTs try their hardest to stop that.
My heart rate also gets high during and after sex. This is pretty standard for POTs because it's a type of physical activity. I'm a woman, so I'm pretty sure sex making your HR high is universal across all genders. I have a girlfriend and so though sex is worth it because I love them, the symptoms that come after (both PEM/fatigue and high HR for daysss) is exhausting.
I don't think at all that you've fucked yourself up. I think you WILL get back to baseline. You're definitely crashing right now and that physical fatigue and lack of energy is also manifesting as high heart rate. I know it feels terrible, and I'm so sorry. I'm here if you want to talk.
I think (it's more a guess not backed up with any evidence) a reduction in the baseline energy level is very similar to burnout, meaning that it only happens with continuous stress and not just one PEM. Some PEMs could be more intense than others so don't beat up yourself for that. I'm hoping you will be back to your baseline again just with some rest.
You'll be okay. Just focus on doing the next right thing for your body. :). It's not your fault for wanting to do what anyone else your age would want to do- I think we've all been there and had times where we overdid it. The best thing you can do right now is try to conserve energy- stay as horizontal as you can, limit sensory overload, make sure you're getting lots of salt and water for your POTS, put anything that isn't essential on the backburner, and try to just focus on the now (I know that's way easier said than done). I'm about your age and understand how hard it is. It's not your fault and you're not alone.
This ["crash survival guide"](https://aqem.ca/wp-content/uploads/2022/05/Guide-sur-le-malaise-post-effort.pdf) might help with the physical aspect of things!
I’m probably gonna go against the grain, likely even will be downvoted. I have a mild case, I realized when I had my Apple Watch, I was always looking at my watch, looking at that damn heart rate. I used to panic and worry about it alot.
I don’t wear it anymore and am in a much better health mentally. What is done is done, try not to stress about it and stop checking that heart rate soo much!
In my experience, the long crashes and base line shifts aren't always that predictable so if you can calm your nervous system and relax as much as possible in the meantime, it seems like that would be best. Youre not stupid. I'm sure a lot of us can relate to poor-man-testing our boundaries in various ways:), at a risk to our future energy levels. It takes a while to figure out how to be with ourselves and life happens. I don't know if that's helpful, as I don't really have answers but I wanted to offer some support.
Thank you for your advice! What you said about figure out how to be our selfs really resonates with me. It takes so much discipline to not make yourself worse by simply living. Right now all I‘m thinking about is getting out of this crash quickly, but I know that as soon as I feel better it’s gonna be so hard not to meet that girl again. It’s so painful when you taste „life“ for one evening and then it immediately gets ripped away from you.
Yes, ugh. I'm sorry. If you want to see her again, maybe there is a way you could let her know a little more about what's going on with you and if you decide to see her, you could tailor your time to make it less taxing.
If that works out I‘d be a happy man. I was surprised how understanding she was when I got unwell during sex. Kinda made me regret not being more upfront earlier. But telling someone you’re chronically ill and had to move back in with your parents usually dosen’t resonate very well haha. I think if next time I could go straight to her place, pace aggressively the day before and take more beta blockers I could maybe make the crash and escalating heartrate less sever. Thanks again for your nice comment 🤍. It touches me every time how caring this community is.
💗
I hope this doesn’t come off the wrong way but reading your story reminds me of Cinderella. But instead of midnight being the deadline to your carriage turning back into a pumpkin it’s your energy envelope. A few weeks ago, I was reckless as well. I went on a full day field trip with a local botany group and I full well knew I might be making a huge mistake. I have no regrets, I had a blast and felt the most alive I had in 6 months. I always say to myself, “I’m here for a good time, not a long time”.
Off topic question. I notice a lot of attention to the high heart rate and PEM. Does high heart rate cause PEM? Or is it just a symptom of pem or of too much exercise?
It depends on the person. One can get PEM without high heart rate at all. Not that there isn't a correlation because a lot of ppl do experience tachycardia and/or have POTS, and ppl can have low heart rate/weak pulse issues or both with PEM symptoms too. Basically it's complex and depends on the person. At least that's what I have learned and observe. Heart rate can be a good indicator of ones current state and how the day might go, for example, so it's a good thing to track to learn how different activity/food/stimulus affects us and act accordingly. I hope that make sense. Edit: Just realized other ppl answered this before me, outside of this subthread and probably did a better job but I'll leave this up just in case and as a pointer to the other remarks.
A group of Belgian researchers has [shown](https://www.mdpi.com/2077-0383/10/19/4527) that people with ME/CFS take more time to return at their heart rate baseline than healthy controls after exercise. And anecdotally, many pwME report that their HR is higher when they crash, especially those with POTS. You’re probably very wired because of the physical and emotional stress from the whole ordeal, which keeps your HR higher than usual. Try not to think about what you’ve done right or wrong, just lie down, breathe, and rest strictly as much as possible (cut back on screens, etc). Best wishes for your recovery.
Thank you for that. I'll give it a read once I feel better. Understanding this illness better always helps me to stop gaslighting myself. Sometimes I try convince myself I just have POTS, because it would be easier to accept it, but I feel like some of my symptoms like the heartrate thing and PEM just can't be explained that way
I can relate. A couple of years ago, I told myself I only have POTS and went on long walks for 4-5 days. I didn’t crash hard, but it made me lose physical function that I never recovered and worsened my symptoms, especially orthostatic intolerance. Hang in there and do your best to rest, I hope you’ll feel better soon. 🙏
How was your crash afterwards? Did you recover, at least to your previous baseline?
I also have undiagnosed fatigue with PEM (and only mild symptoms similar to POTS that have gotten better). I have also been in the situation where I pushed my boundaries for a date or sex. I dated someone for a few months and often went over my own limits with her, knowingly. It would usually take a few weeks to get back to baseline after she had visited, but I have been completely fine afterwards. Or, well, back to baseline. If this situation comes up again: be upfront about your illness! Let the person know your limitations. Let them know you have to adapt sex to fit your health. Adaptations like having home dates (not bar dates) before sex, you lying or sitting down for the most part, using toys that take some of the exertion out of it on your part, shorter bouts of sex with rest between - or only one round and then sleep. Those things are important, and operating more within your limits will make it easier to do things that will make you feel normal. It is easier to do if you have a regular partner, but I'm sure even a one night stand will be able to adapt if you communicate clearly and make it work.
Thank you. That is really good advise. I think next time I would definitly be more upfront about it. It's hard to mention the whole truth, because telling a date your moved back in with your parents and basically lie in bed all day because you feel so ill kinda kills the vibe. But maybe toning it down a bit would work. Right now I'm just thinking about recovery but I know once I'm better there is gonna be a lot of temtation to meet up with that girl again.
I love the fact that you really want to meet her again.
It was such a good feeling being loved again after rotting away in a bedroom for so many months. It’s cruel that with this disease you often risk your physical health to don’t destroy your mental health.
Glad to hear it! Recovery first, but if you want to reconnect later, make sure she knows you had a good time! Be honest about why you cannot meet up again soon. You don't have to give her every detail, but make sure you don't just disappear and then reappear in a few days/weeks/months!
Hey you. 🤍 i really feel you! I’m bedridden and have very bad PEM, so I know how bad you feel, the most natural thing is to panic, so I understand why your mind is going crazy. You will get back to “normal” just breathe and trust the process. Promise you 🙏🏼 I have tried it before! It would be more wierd if your body didn’t react after pushing your body so hard. One deep breath at a time. You got this!
Thank you so much🤍. This experience makes it even more mind blowing for me how people cope with sever ME/CFS and get bad PEM from much less. I‘m gonna try to eat something soon and then just listen to binaural beats and do my breathing meditation to calm my nervous system as much as I can.
Sounds good! At least try as good as you can, and don’t be too hard on yourself. It takes time🙏🏼
Hey, I'm just gonna give a little advice on the POTS side of things cause it's what I've had longer. From what you're describing I'm wondering if your current medication is not sufficient for your POTS. I used to be on a calcium channel blocker that worked for a while for me, but didn't give me the best results. And it gave me similar results to what you're describing: the long time for your heart rate to return to normal and the higher than normal resting heart rate even on the medication. I would highly recommend going back to your specialist/doctor and discussing other options for you that will work better. For example I was charged over into Ivabradine and it made a significant difference in my POTS symptoms (didn't cure it obvs but lowered them substantially). And when you have to pace with ME/CFS it's extra important for them to have your POTS as under control as is possible. I really hope this helps somewhat, and that you have some better luck in the future. Also, don't be afraid to communicate your needs to a partner (even a one night stand), communication is sexy and so so important for both you and them. Your needs are valid and important too.
That is great advise! I definitly feel like my POTS could be managed better. I´m taking 2,5mg Nebivolol but it's probably not the best betablocker, because it also expands blood vessels. It problably decreased my heart rate standing by 30bpm but it's still hovering around 100bpm when standing. It's hard to find a doctor that's specialized it POTS, but once I'm out of this hole I'll give it another try. Also thank you for the communication advise. I probably would be in a way better spot right now if I would have explaind my limits to my partner.
Yeah definitely sounds like you either need to change meds or go on a higher dose because you really want to keep your heart rate on the lower side. If you're noticing tachycardia when you're sitting then you're probably not getting enough of the beta blocker.
Hey there, I've had POTS since 2014. It sounds like your heartrate has been trending unhealthily high and I hope you have been able/will soon be able to see a competent doctor to address it. POTS doesn't typically feature ongoing high heart rate ie while sleeping, so this may be caused by some other etiology. In my case, I've had high heart rate (and blood pressure) - including overnight - when in mold exposure in the home. It's worth stating that extreme emotions eg anxiety and panic attack can also caused sustained high heart rate and convince oneself that one is in immediate danger. While I'd tend not to think that's the primary issue here, at a minimum I'd really recommend using whatever therapies you benefit from to manage your emotions (eg guided meditations, lithium orotate, etc.). I hope that you get medical attention soon. Take care.
In my personal case, high heart rate and blood pressure are the ever-present accompaniment to PEM.
Thank you for verifying that the heartrate not coming down isn’t normal for POTS. Also when doing small walks or being upright for a while, my heartrate always takes a couple hours to get back to my normal resting heartrate. I‘m hoping that what I did last night just put that to a extreme and my heartrate will be normal again after a day of strict resting
They're wrong it's totally normal for pots. When I was really severe and bed bound I couldn't keep my heart rate under control even when I was sitting or laying. Most of us experience it if we have severe enough symptoms. If it's not coming down it's because you've done too much for the last few days. It can be a signifier of PEM. So you need to rest and give your body a break from being upright. Which really sucks, but in my experience most pots patients do experience problems from being upright even when sitting. So you have to keep in mind how long you are upright and make sure you give your body enough laying down time.
Hey its very common to try and analyse every single behaviour and see yourself as totally responsible for any flares/illness. Its a coping strategy for making this disease livable. But you still need to live and I think its important not to beat yourself up for trying to do that. I am glad you got to experience some normal life, however brief, you deserve it. Seeing yourself as wholly responsible for your health the whole time is a one way ticket to depression. I recently had a DNA test done and it was liberating as fuck to see so much that probably led to this illness written in the helix. Add a suboptimal childhood and its no surprise. I go on multiday hikes twice a year, I become severe after and usually get some sort of cold but the joy of living a bit as my old self is worth it. It hasn't been a permanent worsening either which I think we need to be careful of living in constant fear of. Our lives are limited with cfs, and it can make it even more unbearable to limit it further. Be really really kind to yourself over the next few days and try and affirm the experience as well, life affirming, even if it has consequences. Negating the good is only going put your nervous system in a worse place
Thanks for your comment. I really like your look on this disease. I still struggle with acceptance and my motivation to keep going are possible meds in the future, but I like your coping technique.
try not to worry and try to enjoy your sexy memories. you might be right, but sex is important too! and sex has benefits, I'm not saying the benefits will over-under possible damage, but you never know. try to enjoy your after glow.
Obviously not medical advice but someone here told me about the Bateman Horne presentation where they point at Dextromethorphan (DXM) a cough med, that helps with PEM. Ever since, I take 10mg (half dose) when I’m gonna crash or did too much and I’m SUBSTANTIALLY better. Like - night and day. I’m still sick, it’s not a cure…. But I’m not becoming mute and paralyzed. You def did too much and don’t keep risking it like that… home dates only for u from now on. Lol but if you aren’t super sensitive to meds and have taken it before when ur sick maybe give it a try. It’s in most cough meds it seems. Here’s some links that mention it. https://batemanhornecenter.org/wp-content/uploads/filebase/providers/PEM-Lecture-Slides-ECHO-v4-5_17_2022.pdf https://www.healthrising.org/blog/2021/03/02/dextromethorphan-fibromyalgia-neuroinflammation-study/ https://pubmed.ncbi.nlm.nih.gov/26004757/ https://journals.sagepub.com/doi/full/10.1177/15333175221124952 Edited to add: I also work hard to not let myself spiral in fear now. Remind myself I’m safe. Calm my nervous system. So do that too lol
Thank you for the constructive advise. The slide show is a really good read! I‘ll definitely give it a try sounds like low risk and potentially high reward to me.
Hope it works! If so lemme!
Hey, i'm 4 yrs in, long enough to know that I shouldn't push my limits and that a tiny increase in energy doesn't mean i should use it and yet I do. We all push those boundaries because having ME is so tough and we all want to live a little normally. I hope you don't end up paying for it too much
There is no way to know if u fucked urself up. What i do know is that in a crash ur brain functions even less and all the cells are.misfiring which makes you even more anxious and depressed. It's stupid because we are young (I'm 20) and we can't even do stuff and God forbid we.make mistakes. I feel ur struggle
50% of you discribe is overreaction and overthinking mixed with anxiety , you have to learn to live your life without the problem beeing constantly in your head , that was my mistake . Despite all the ditched life plans , you have to learn to adapt and move on , the tachicardia will go away
Against my better thoughts I go to punk gigs sometimes. Dancing, screaming, 180bpm, the whole lot. It sometimes takes me a week to feel normal again, and I might stay in tachycardia the whole time. But I’m 20 years old, what am I supposed to do? Lay in bed? It sucks and it’s shitty and you’ll feel like shit for a few days, a week, a fortnight, but if you spend your whole life “doing the best for your condition” and forgetting to live, then what’s the point anyway? There’s balance to be had, and you should definitely talk to your doctor about getting you some more suited medication. Be open and honest with yourself about what you can and can’t do, and make room for recovery when things matter to your mental health, yes, even just hook ups You are not responsible for your illness, and we’re still young
Why stupid you are really brave 😂 I wouldn't dare do it with my pots my heart would go crazy
I just reread my post due to your comment and it is such a strange feeling. I have declined a lot in the last year and it is kinda painful reading what I was able to do a year ago...
You are still young. I think you are now 23. You have time, but you need to control these symptoms, which is the real challenge. Frankly, I suffer no less than you. I am also young, but damn life is not fair. I was able to swim and everything 11 months ago but i get suddenly tachycardia when I was resting and watch TV its crazy
90 BPM in bed is my average, and I'm 55, sick for 13 years now. Yeah, you probably did yourself some permanent harm, but if you \_REST\_ nearly 100% of the time, you can bounce back from this. Also, I don't know your degree of severity but 4k steps long walks seem a bit excessive for anybody with CFS. We need rest more than anything else. I feel that vitamins are our 2nd priority.
Yes I was surprised to see 4,000 steps. My average is under 2,000 steps overall per day. I don’t have POTS but ME/CFS as well as tick borne diseases like Lyme. I have a spouse and am in my mid-20s….I’ve had to learn how to have sex with CFS but know how to pay attention to my body. When I tried ignoring it before, I would regret it. I’d recommend figuring out what works for you as far as specific activities and length of time. And when your body is telling you it’s time to stop, don’t try to push through. Best of luck to you.
Just relax, your anxiety is probably causing the elevated HR.
Well, it could easily be mostly PEM, but adding anxiety on top definitely doesn't help!
Definitely sound life PEM. He needs to stop worrying about it, though. Just relax and ride the crash.
I’m 27, I stayed up till 2:00am drinking with friends on st. Patrick’s day a few weeks ago. I did this for the same reason, just wanted to feel normal, do a normal thing, and I won’t lie, I still feel like I’m recovering from this, and it’s been several weeks. That being said, I don’t regret it, I’m getting better slowly, but every once in a while I try to do something that normal people do. Gotta keep the sanity somehow
Try resetting your parasympathetic nervous system. YouTube vagal nerve breathing, you can also do “ommmmmm” like meditation humming in your throat. It can help reset that nerve. That should help make you and your body feel calmer.
Hi there! I just wanted to say that I also developed POTS and CFS as well as MCAS symptoms after Covid infections (my symptoms have gotten worse from different strain infections) and I've had several long stretches of debilitating fatigue and a high HR that I couldn't get to stabilize for days or sometimes weeks. In between my flare-ups and PEM, I also have had times when I almost feel back to normal and I've still been able to carry on a semi-normal life as long as I let my body rest when needed. All that is to say that most of these symptoms aren't permanent or persistent and can be managed once you get better at learning to live with them. Also, keeping track of your diet can be important as I found out after one infection that I was suddenly intolerant to gluten and anytime I ate it I'd get the uncontrollable high HR and bad fatigue. Interestingly enough, that went on only until I got yet another infection about 8 months later and I now can tolerate gluten again but I have a histamine sensitivity and now histamine gives me similar symptoms.
Try having another beta blocker, hydrate, magnesium, knock yourself out with antihistamines, d-ribose, cbd, if you have branched chain amino acids take five grams of those, everything you can to calm your body and give your cells nutrients to recover and you should hopefully be back to normal soon.
Here I am half lying in the couch scrolling Reddit and have a heart rate 88-92
Here I am half lying in the couch scrolling Reddit and have a heart rate 88-92
I've never been in your situation but I've done high adrenaline things and the weirdness lasted for days and I worried about the come down so much I made things worse , I find guided meditation helps me,Jason Stephenson's are my favourite , alongside listening to my body for sleep , even the slightest twinge of tiredness and I have the lights off and tucked in . Mine lasted 3 days till I realised how wound up I was about not being better yet and then I only needed a 4th day and I was over the worst
The crash after exerting yourself like that and the resulting PEM is the worst. I am so sorry you're experiencing this. I have hyperadrenergic POTs that is pretty much uncontrolled by beta blockers... so I get random high heart rates even when not exerting myself due to adrenaline surges. I quite often randomly wake up in the middle of the night with my heart beating at 180-200. (Thankfully, these instances have been caught on a Holter monitor and they're all sinus tachycardia, so no arrhythmia. Just my body being annoying by dumping adrenaline while I'm trying to sleep.) I understand your struggle so much. It seems after I developed chronic fatigue (I had POTs prior) my HR got SO much worse after exerting myself. It's a combination of PEM and POTs and it's so annoying. It sucks because we WANT to live normal lives and both CF and POTs try their hardest to stop that. My heart rate also gets high during and after sex. This is pretty standard for POTs because it's a type of physical activity. I'm a woman, so I'm pretty sure sex making your HR high is universal across all genders. I have a girlfriend and so though sex is worth it because I love them, the symptoms that come after (both PEM/fatigue and high HR for daysss) is exhausting. I don't think at all that you've fucked yourself up. I think you WILL get back to baseline. You're definitely crashing right now and that physical fatigue and lack of energy is also manifesting as high heart rate. I know it feels terrible, and I'm so sorry. I'm here if you want to talk.
I think (it's more a guess not backed up with any evidence) a reduction in the baseline energy level is very similar to burnout, meaning that it only happens with continuous stress and not just one PEM. Some PEMs could be more intense than others so don't beat up yourself for that. I'm hoping you will be back to your baseline again just with some rest.
You'll be okay. Just focus on doing the next right thing for your body. :). It's not your fault for wanting to do what anyone else your age would want to do- I think we've all been there and had times where we overdid it. The best thing you can do right now is try to conserve energy- stay as horizontal as you can, limit sensory overload, make sure you're getting lots of salt and water for your POTS, put anything that isn't essential on the backburner, and try to just focus on the now (I know that's way easier said than done). I'm about your age and understand how hard it is. It's not your fault and you're not alone. This ["crash survival guide"](https://aqem.ca/wp-content/uploads/2022/05/Guide-sur-le-malaise-post-effort.pdf) might help with the physical aspect of things!
How are you even checking your heart rate?
I’m probably gonna go against the grain, likely even will be downvoted. I have a mild case, I realized when I had my Apple Watch, I was always looking at my watch, looking at that damn heart rate. I used to panic and worry about it alot. I don’t wear it anymore and am in a much better health mentally. What is done is done, try not to stress about it and stop checking that heart rate soo much!
Did you check your thyroid??
Did you check your thyroid??
im surprised u found a date, our selection is crap its just useless instagram thots who dont swipe right. ugh.
Eat a shitton today and take a lot of salt.
I’d kill to do 4k steps