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Everything posted by toomanyproblems

  1. I had my first and only true seizure after pulling in the driveway coming home from voting in 2016. I'm sure it was from stress. I still occasionally have seizure like things, but not like that one.
  2. I hope there will be many people reporting their experience with this so people can gauge whether to try it. My sister and I did it a few months ago. She enjoyed it but I was not impressed. If anything I felt worse after. I also have hyperPOTS. Again, I hope there are other responses to this so we can get more of a balanced idea of whether it helps some people and is worth trying.
  3. I have a lot of back problems, including a pretty bad lower lumbar scoliosis, probably from my EDS. I use gabapentin for my CRPS pain and it helps the back pain. It's a good drug IMO. If spasms are causing the nerve pain to be worse, valium is still considered the best muscle relaxer.
  4. No, but I have it too. A smell of stale smoke. And it's not just when I lie down and my nose stops up but constantly for weeks at a time when I have it. It's been going on for years. IDK if this helps but yes, I have that problem too.
  5. If you're having side effects then you are absorbing the meds, at least part of the time. I have trouble absorbing meds due to gastroparesis. It seems to be intermittent however. Do you think it's like this for you? It's a real problem and one that doesn't have a lot of medical remedies for most drugs. I mostly have trouble with my oral steroid I have to take for Addison's. I have to inject it when this happens. But at least I can do that with the steroid. There are patches for some drugs if you think it might work.
  6. I have it too and have for decades. I don't even pay attention to it anymore but I did notice some yesterday. FWIW I got IVIg on Saturday. It may be reduced though like p8d describes.
  7. FWIW, a couple of years ago my PCP's nurse practitioner was manually taking my pulse. He said any slight movement caused a big increase and that it was not normal. I'm relating this because he was checking manually by feeling my pulse at my wrist -- not some monitor that always seems to be called into question, and also because he said it was not normal. I tend to think of my ANS as not providing the buffer it should and in addition, that buffering overall seems quite variable. I know at least part of the time that lack of buffering occurs *with* other bad symptoms, if not outright contributing to them. The worst I've experienced with this was last January, when my HR, BP, gastric emptying and internal temperature regulation went from one end of the spectrum to the other in a very short span of time for a couple of weeks. I lost ten lbs in ten days. The way my poor body was slung from one extreme to the other was truly scary.
  8. For all having these symptoms, look up CRPS/RSD. I hope you don't have it.
  9. I have the same problem as others have stated -- my normal HR at night is in the 50s with dips into the 40s and rarely into the 30s. I find when my Fitbit derived resting HR average is lower, I generally feel worse. IDK if that's because there's more of a jump up to 120 or so multiple times a day upon standing or whether the low resting HR itself causes me to feel bad. And by bad I mostly mean more dizzy.
  10. I've formally been diagnosed with gastroparesis. I agree with others that diet is the best way to manage it and it's largely trial and error. I spent nearly three years on liquids. Now I can sometimes eat solid food but have to wait before I try to again. It's still trial and error but I'm pretty happy like this now that I understand my limits. One way to help is to not eat until you feel better. You can actually go quite a while without food or just switch to liquids.
  11. For pulse you can always check manually at your wrist or neck. I mean, even if you don't count with a stopwatch you should be able to tell the difference between 60 and 110. That's how I check my devices if I have doubt.
  12. Yes. I don't have a CPAP machine but I do have sleep apnea so I wear a SpO2 monitor with an alarm when my O2 drops below 90%. I normally get up several times a night to let dogs out and go to the bathroom. Maybe half the time my O2 drops below 90 and the alarm goes off when I lie back down. It goes down in the mid 80s. I have to breath really deeply and it will eventually go back up in the 90s. I always assumed this is due to the rapid decrease in HR when I lie back down but maybe not if it happens to you and your HR doesn't go up 30 or more beats upon standing. It will also randomly drop down in the 80s during the day when I'm just sitting around. I have a couple of SpO2 monitors so the reading is probably close to accurate. In general, dysautonomia tends to cause you to have some weird symptoms that nobody can explain and that can be quite disturbing. I know this is crazy but as time goes by with these strange and frightening symptoms and I'm still here, I often comfort myself with, well, I didn't die last night...I'm not sure that's helpful but it's all I have at this point.
  13. That sounds like QEEG based neurofeedback. I actually had over 40 sessions of it while I was doing hyperbaric oxygen therapy. It's not like biofeedback. It helps change the brain wave pattern to something more balanced. There's actually a lot of supportive science behind it. I have to say it was really wonderful. I would definitely recommend it from a qualified place. It was just too expensive to continue for long and I had to drive to get there, which I can't always do. But I saw definite improvements in the areas we worked on.
  14. It's an antihistamine and like Benadryl, Mirtazapine makes me jerk and sometimes have full body convulsions. I love the other effects but the jerking is too awful.
  15. Thanks for this! Here is the scientific reference for the article in case anybody is interested: https://www.ncbi.nlm.nih.gov/pubmed/31523009 I'd be curious to see if any POTS people have increased levels of this hormone.
  16. I was on plaquenil and imuran until about four or five years ago. Now that you mention it, the dizziness became much worse after I quit. Oddly, I've had several therapies that made the dizziness better but didn't really affect my HR increase upon standing.
  17. The ragweed here has been extremely high (that's the weather report not my description). Ragweed has always bothered me but I'm seeing more definite correlation with some symptoms, including, oddly, GI symptoms and I cannot sleep at all. Anybody here have GI symptoms associated?
  18. I did get a similar one of these covered by insurance because one of my legs, actually my entire lower right quadrant, is way bigger than the other side and after more than six years, nobody knows why. It does get plenty of medical attention though. So I kind of had it foisted on me but ok. Anyways, I rarely use it because it doesn't do anything to decrease the edema, at least not for long. However, the point they made in giving it to me and it's a good one is with all blood pooling or edema for whatever cause, the lymph system becomes involved and even though it seems I don't have lymphedema, these pump systems help keep the lymph system from becoming too disrupted. I don't even know if what I wrote makes sense 😕 But it helps your lymph system even if it doesn't permanently help the blood pooling or permanently raise your BP.
  19. But you were out in the world! I struggle with wanting to keep everything so I don't crash and wanting to be a real person every once in a while. I continue to think it's worth it to do things occasionally (read very rarely) that are worth it to me.
  20. I also have episodes of hypertension. I don't take it unless my diastolic is 110 or so or my systolic over 175. There's rebound hypertension from clonidine so I don't take it unless I really feel it's necessary.
  21. I used to get these scary painful spasms where muscles in my arm would bunch up and stay that way. I mean you could see them all bunched up. It cramped so bad. It felt like a bad Charley horse that just went on and on. It would last for minutes to an hour. The next day my muscles would be sore like fibers had been torn. This is common in CRPS which I had just gotten but you don't sound like you have that. Sometimes CRPS people go on to get dystonia. I don't know what I did right but I rarely get these anymore and they did not progress. My guess is it's an electrolyte imbalance causing yours. Maybe you need to balance out the increased sodium in your diet with some potassium. Eat some bananas maybe.
  22. I've taken mine when I was trying to pass out or when I got back to the bed from passing out and it's been really low. I'm almost scared to say it here. The lowest was 50s over 30s and it went on for an hour or so like that. Mine is really all over the place from day to day for no good reason. I don't take anything for it usually unless it's scary extreme. I have both midodrine and clonidine.
  23. Random symptom man, how old of a person are you if you don't mind saying?
  24. I get 60g of IVIg over two days every three weeks. I've been getting it off and on for two years but continuously since January of this year. I'm not getting it specifically for POTS but it helps some of my symptoms. My HR still goes up like it did but I'm not as dizzy. It's also helped some of my other autonomic nervous system problems like gastroparesis. I have a lot of autoimmune diseases so it's probably related. It's hard to get it covered by insurance for anything anymore. But if you can it can be worth it.
  25. IIRC your onset of symptoms was related to a specific incident (blowing up a ballon?), and that subsequent to extreme valsalva during childbirth that you felt was involved. Why would those incidents be related to cranial settling, assuming that would cause a more prolonged course? I have EDS and it *looks* like my neck is sitting on my skull in such a way that this could be an issue. I had an MRI to detect Chiari but it was lying down, not upright, and they did not note it in the report. Even so it really looks hit or miss as to whether this surgery actually helps. Even if they had found it, with my own presentation and the present lack of knowledge on this problem, I don't think I could do it. I feel for you with this choice and wish you the best in your decision.
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