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About toomanyproblems

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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?
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. Random symptom man, how old of a person are you if you don't mind saying?
  15. 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.
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