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p8d

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About p8d

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    Female
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    Wisconsin

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  1. @KiminOrlandoany progress on this? Mine has been low, just borderline, for years but if I add salt capsules my BP soars. My adolsterone level is being rechecked now and will be interpreted by an endocrinologist this time. My potassium is always fine.
  2. Oh @roamer1 I feel for you. Insomnia has been really, really bad for me from day 1 of this and after trying every med and supplement available the only thing that gets me to sleep is mitrazipine. I take a quarter tablet. It raises my BP as does diphenhydramine and especially gabapentin. I take guanfacine to counteract my constantly high norepi and a beta blocker (coreg) in the evening and then the tiny dose of mitrazipine at bedtime to keep supine hypertension at bay. I also take guanfacine in the morning. My cardiologist prescribed carbidopa but someone here recorded bad results so I never tr
  3. The fludricortisone helps your body retain fluids to keep BP up and reduce OH. Keep an eye on your BP while starting it. Mine got very high on a quarter tablet. I, too, have hyper POTS.
  4. @MTRJ75Yes, I was diagnosed with a biopsy along with an EMG to rule out large nerve fiber problems. I opted for for SCIG because of a history of migraines and was afraid of IVIG. Plus I can do SC at home. It is expensive but it is covered by Medicare (I am disabled) and I have prescription coverage through my husband’s insurance. I also have autoimmune disease (UCTD) and had positive results on the Celltrend panel (company is in Germany) which apparently helped convince the insurance to cover it. I believe that the companies that make it offer discounts if you have insurance coverage. Keep get
  5. I think I had that metallic taste for a few weeks when I started taking methyldopa but it went away. Maybe your dose is too high?
  6. Thank you for posting these. I am not on Facebook which is sooooo good for my mental health but I miss seeing this type of research. I was diagnosed with SFN when I was diagnosed with dysautonomia. I also have autoimmune disease so this all ties in very well. It also explains why SCIG is helping some aspects for me. It’s nice to see the research making progress. Thanks again.
  7. One of the times I was on it it was in short supply and my Dr wrote a paper prescription that I photographed and sent to a pharmacy in Canada. It was very easy.
  8. @Sushi HBOT sounds interesting. Can you please post or PM me where you got it and cost? What do you expect it to help with? Any reason why high barometric pressure helps? I feel awful when it’s falling or low. Thanks.
  9. Oh @Pistol I am so very sorry that this happened. I know the feeling all too well. Try to break the routine that helps even a tiny bit and all h#ll breaks loose. I blame the computer equipment! For me anything remotely stressful sends me into sympathetic overdrive and dealing with computer equipment is among the top of the list. That would set me back several days too so I am afraid that you are not alone. My neurologist said to me this week “my, your ANS is extremely sensitive” when describing things that help/hurt. I think for some of us that is unfortunately true. This is the place to vent
  10. I think many of us have worse mornings because we are more dehydrated from not drinking overnight. I always am worse in the mornings. I have very labile BP but in general it’s lower in the morning. @Pistol is 100% correct, our ANS is extremely sensitive to just about everything. Even my neurologist said that to me the other day. I am extremely sensitive to fluid intake and stress. 16ounces of liquid can raise my BP 30 points for about an hour. One trick I was told to do is drink a glass of something before getting up in the morning and stay lying in bed for 15 minutes then get out of bed.
  11. @RobinB my neurologist orders it and I was seeing a physical therapist. I see her virtually now for tweaks. It’s helped quite a bit except for mornings or if I am upright too long. I can now do things that were impossible at first but it’s taken a long, long time. You have to never stop.
  12. I had the problem with patterns for several years and still get really dizzy in moving vehicles at greater than 35mpg. I also sway quite a lot if I stand still for any length of time. It has nothing to do with my eyes/ears, that’s all been extensively checked. I even had a brain MRI. One neurologist thinks it’s a pain free migraine and suggested topomax which I couldn’t tolerate. What has helped is 4 years of physical therapy for general strength and especially for proprioreception in the ankles/feet. Treating my underlying autoimmune disease has helps and I rarely stand still, I always move/w
  13. I did basically the same thing as @cmep37 after experiencing similar symptoms to your wife. I have hyperadregenic POTS, OH and the autoimmune disease (mixed connective tissue disease). Basically that just means I show symptoms of several autoimmune diseases but not enough of any particular one for a firm diagnosis. At my worst, about 9 months after sudden onset, I weighed 85# and was completely debilitated, in the hospital for 5 days and fed through an IV for 6 weeks so I know how very bad it can be. I was told to get up every hour and lean against a wall, never stay in bed all day, even if it
  14. I had to have an order from my Dr so the lab would actually draw the blood. Finding a lab was a bit difficult but the local medical college did it and gave me back the tubes for shipping. They even got me a box for shipping it which was way above and beyond. I had to send it FedEx which was a disaster because no other company would send a bodily fluid. There are specific forms that 99% of the employees don’t know about but I have copes if you want them, just PM me. I was missing one of them and my blood got held for 1-2 days up when it arrived in Europe which might have messed the results alth
  15. I was told a difference is completely normal but I don’t recall the specific numbers. I believe it has something to do with distance from the heart.
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