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  1. I had POTS for 3 years. It followed a waxing and waning pattern and finally left me completely bedridden. I can recall my heart rate lying down was 60 bpm and would rocket to 200 bpm after standing for 10 minutes or so. Yuck! Yuck! Yuck! I felt like "death". I finally started Florinef, DDAVP, and gradually started an exercise routine. At my peak, I was jogging 8 miles 4-5 times per week, lifting weights, rowing, using the stair master, and a cross trainer. I pumped my blood volume up to elite athlete levels per Dr. Levine. I dropped the Florinef and DDAVP without issue. I still qualified as ha
  2. I just wanted to pop in and give a quick update. I apologize that I don't frequent the boards anymore. I am still traumatized by my experience with POTS. I find it difficult to read posts that hit so close to home. I have fully recovered from POTS. I even was sick with the flu this summer and was in bed for a week. I'll be getting my flu shot for now on! No relapses post flu. I guess I have been "POTS free" for slightly less than a year. 11 months? I went to Disney World in May. I am back to my regular life and feel healthier and stronger than ever. I can even stand (yes STAND, not sit leaning
  3. Any of your docs suggest the saline with albumin?
  4. Julieph85, I haven't been on this forums in maybe over 6 months. For some odd reason, I felt compelled to pop in today, so I thought I would respond to your familiar post. The orthostatic hypertension could certainly be from deconditioning. Your body's reaction to be putting on strict bed rest is "normal". The human body is not meant to lie in bed for weeks on end. The orthostatic hypertension is a sign of a healthy autonomic nervous trying to compensate for a heart that no longer has the ability to pump blood back upstairs. It is a sign of an overactive sympathetic nervous system in response
  5. Diagnosis of Parkinson's is made by clinical symptoms and evaluation by a neurologist, as well as response to levodopa. There is no quantitative lab test or scan. The dopamine blood and urine tests are not diagnostic for Parkinson's. Looking forward to the results of this study. Keep the faith.
  6. Hi Maxine, I've also had what I believe are olfactory hallucinations. Very disturbing. My "bad smell" was sour milk. I've had numerous MRIs and no abnormalities. I have no idea what this is, but luckily I have not had this problem since January. Just wanted to let you know that you are not alone.
  7. Thank you for posting your experience. I hope my POTS specialist can work with me to improve the pain by improving the cerebral hypoperfusion that is causing my pain. If we exhaust all treatment options in this arena, I will have to move on to a pain specialist. I know what you mean about the opiates worsening the other POTS symptoms. At this point, I just want the pain to stop. I'm glad you found something to ease the migraines. It's all about quality of life. I haven't seen cyproheptadine in ages though I recall studying it way back in pharmacy school. How interesting.
  8. Blue, Would you find sharing with me what medication you take to prevent the full blown migraines? This is a constant problem for me.
  9. Dana, I have the exact visual symptoms. Before POTS, I had about 4 migraines sporadically through my life, accompanied by auras and visual disturbances. The POTS visual disturbances are very similar to a migraine aura. Beta blockers are used to prevent migraines. Even though you are not getting a full blown migraine I suspect this why the beta blocker took the visual disturbances away. I appreciate you bringing this subject up because I do have horrible POTS related headaches and a constant, persistent aura. I am going for more testing next week and will ask about a beta blocker.
  10. Interesting.... It is said to be a cholinesterase inhibitor (this is Mestinon's mechanism of action). It doesn't look like there are many studies.
  11. Welcome to the forum.

    This is a wonderful place for support and friendship. Bellamia~*

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