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About toomanyproblems

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  1. 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.
  2. 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.
  3. I understand. Those numbers under those conditions would make it easy to feel desperate and scared. It certainly makes me feel that way when I have abnormal BP readings and I've never had a diastolic that high at home. And this isn't new to me either. It's very difficult to find doctors who can grasp what's happening. I hope you get some help.
  4. A few months ago I really felt like I was in some sort of crisis. My BP would be all over the place. When it started, it would trend high for several days, then low for several days with no medication influence or any other reason for the swings. At the worst it would be high and then *very* low and back in the same day. An example is I would get readings like 160/110 lying down, then standing up I would be passing out from hypotension. I actually took it and got a pic of a reading of BP 54/40, HR 125 while I was trying to pass out standing up (well, I was actually leaning on the counter taking it trying to support myself). Then I would get my normal hyperPOTS type readings of 118/90 HR 67 lying down and 125/101 HR 105 standing up either in the same day or the next day. At the same time, other autonomic functions were going haywire. I have gastroparesis so I know I have impaired gastric emptying. But during this crisis my stomach would either not empty, or "dump" as it's called (dumping syndrome). Once I saw easily identifiable pills I took three hours earlier floating in the toilet after having diarrhea. My ability to control internal temperature was at its worst yet. I had hot flashes with severe sweating followed by a backlash of freezing cold cycling every hour and at its worst every twenty minutes. Because it took about ten minutes for the hot flashes to subside and the same for the cold dips, it became a continuous battle. I had large cool packs and a heated blanket on my bed at all times to help. This went on day and night. I couldn't sleep. I was exhausted. With all these autonomic nervous system controlled functions going haywire at the same time, I came to feel that I had no buffer at this time. My autonomic nervous system was reacting to one extreme then slinging itself into the extreme at the other end of the spectrum. There was no fine control. As I weathered this storm out, I found my internal "buffer" increased and my fine control became better. In a few weeks, I eventually returned to my normal still messed up state but I was way more stable. Since this episode, I view my autonomic nervous system problems differently. I think of my BP, HR, gastric functions and temperature control in terms of how well I'm doing buffering extremes; how well I'm doing with fine control. This way of thinking is helping me to test out situations that help my "buffer" and realize those things that make it worse. Much of it is out of my control of course. But just having some sort of grasp of what is happening is helping me to feel more in control in my mind, even as my body does weird unexplainable things.
  5. There never has been a good test for measuring plasma volume.
  6. I have had this all my life. As a little kid my urine would become so concentrated it would burn. Instinctively I knew to drink more when this happened even that young. I rarely have any thirst. I have to force myself to drink. I find it exhausting to make myself drink enough and usually fall short of my goal.
  7. Hi Cinereous. It's not uncommon to read of people having this problem on POTS forums IME. I too have gastroparesis (diagnosed by gastric emptying study). It was pretty severe at one time. They wanted to put me on a feeding tube which I refused. The specialist I saw felt it was related to my dysautonomia. I was on liquids for a couple of years. Then I started getting ivig and things got better. I can eat more solid food now. I think it probably does wax and wane in most people though. It's manageable even though it's no fun.
  8. They don't get into enough of the medical details in the article to know exactly what his problems were. He did keep the functioning part of his adrenal glands. But those parts aren't functioning in mine anyway.
  9. Yes, I thought of that That's why I haven't pursued it further.
  10. Because I have primary Addison's and hyperPOTS I have long fantasized about having my adrenal glands removed. They aren't producing any natural steroid anyway but my endocrinologist says for some reason they can almost always produce adrenaline. They aren't doing anything useful for me. Only bad. But no one would do the surgery I'm guessing.
  11. Like many others here, I have both bradycardia and tachycardia. My HR will dip into the 40s at night sometimes. One thing I've noticed anecdotally is the closer to normal my average resting HR is, as measured by Fitbit, the better I feel from POTS symptoms. When I started IVIg my average resting HR was in the 50s. It went up to high 60s low 70s after the loading dose of IVIg. The most dramatic improvement was the dizziness decreased. I had been dizzy every time I stood up. That changed to only occasional dizziness. This had a huge effect on my quality of life since it allowed me to drive again. For years I've had a lot of variation in symptoms yet my tachycardia events on standing seem pretty consistent. I've always wanted to ask if anybody here correlated symptoms with resting heart rate. IOW is the bradycardia causing more symptoms than the tachycardia?
  12. A couple of years ago I started jerking, mostly on one side but sometimes both. Most of the time, I just jerk one arm or leg but sometimes I wake up in my sleep having a full body convulsion where I sort of jack knife into a fetal position and then straighten back out. Although this jerking happens during waking hours, it seems more frequent at night. I don't mind the jerking as much when it isn't accompanied by what feels like an uncomfortable build up of electrical charge and then the release. That part bothers me a lot. It's like restless legs on steroids. I was sent to a neurologist over it but declined further testing like a sleep deprived EEG and a few other things. I declined because it's difficult for me the arrange for extensive testing such as what they wanted and it was unlikely the tests were going to show anything. The neurologist did not have an idea of what caused this. My other problems also complicated a possible diagnosis. I had had an MRI of the brain a couple of years back that was basically fine. One thing that became clear to me was antihistamines such as Benadryl made this jerking a lot worse. In reading about the possible reason for this jerking, I determined it was probably related to my dysautonomia and that these types of problems are commonly made worse by antihistamines. Interestingly, I had taken Benadryl for many years, sometimes nightly for sleep, without having this problem. It only started a couple of years ago. I don't know if this is similar to what happened to the OP but I thought I'd share my experience. I have less of this jerking now that I'm getting IVIg. I also don't take Benadryl unless I absolutely have to. I've simply accepted that this is something that will happen to me, probably because of the dysautonomia and I try to minimize the things that cause it.
  13. One form of it is primarily hyper mobility and that's the form I have.
  14. CRPS itself its not a type of dysautonomia. I assumed your mother had a separate dysautonomia diagnosis? I related my story to suggest that emotional trauma can cause these types of problems. CRPS is definitely a screw up in the brain regarding pain and wind up, but its initiation can be connected to emotional trauma, possibly because physical and emotional trauma are registered in the same part of your brain. Perhaps POTS is the same. That was the main point I was trying to make. The original place I got CRPS was in a foot where I had several bad ankle sprains over many years but nothing recent and no ongoing pain. CRPS, as well as dysautonomia are also more common in people with Elhers-Danlos syndrome, which I also have. I've sprained both ankles several times over the years. I don't know why it chose that spot and that ankle but it seems to have initiated due to emotional trauma. I was not able to find out the main site of others who got CRPS from emotional trauma. The study did include close to 10,000 people so it was a good sample. Interestingly, one of the main points was that those people who got CPRS had no more mental health problems before their diagnosis than the general public. Like many diseases, Drs are quick to blame CRPS on psychological issues instead of an actual disease process. This paper handily disproved that.
  15. In my own case I had an acute sequence of events begin the exact day I went to divorce court ending 32 years of marriage. I noticed my right ankle swelling significantly that morning. I went on to acutely develop severe symptoms including losing over 20 lbs in two months (I was not overweight starting out) and significant POTS symptoms. My right leg continued to swell but my eventual diagnosis of CRPS was delayed by nine months as they aggressively pursued a cancer diagnosis because of the rapid weight loss and swelling of my right inguinal lymph nodes.. In research, I found around 7% of people who develop CRPS do so not because of physical trauma such as surgery or injuries, which is normal for development of CRPS but instead from a severe emotional trauma such as a death or divorce. Research has also shown that severe emotional trauma can affect you the same way as physical trauma because it's in the same part of your brain. That's why some anti-anxiety/anti-depressants help with either thing. So I would say yes, a death could precipitate dysautonomia in the same way physical trauma or infection could. As for your second question about genetics -- dysautonomia is found increasingly in people who have CRPS but I've never seen anything showing a firm genetic link to developing CRPS. CRPS is pretty rare though so maybe they just don't have enough people with it to have seen a genetic link. I would think your mom's case would be linked to the CRPS.
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