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tiger

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Everything posted by tiger

  1. For the very few of you who also have myasthenia gravis, can you tolerate midodrine. It worked for me, but I had such bad slurred speech when taking it I had to stop. Why do I have to have 2 difficult diseases!! Very frustrated.
  2. Wow, I didn't know he wrote a book. Thanks for the info but I didn't find anything helpful.
  3. The doctor knows, he says it's from lack of circulation. I can't tolerate a lot of medications for Pots since I have myasthenia gravis so I just have to deal with it. My brain fog goes away when I lay flat, so I know it is orthostatic.
  4. I can't take this horrible brain fog any longer. I feel like I have no idea what's going on and my hair is falling out! This concerns me that I am not getting enough circulation to my brain and overtime my brain cells will die from decreased oxygenation. Anyone else have brain fog like this?
  5. I was working as a RN in a hospital for 6 yrs, but can no longer work there. I too am looking into work at home options. I tried for several months to look for a step down position but people were rude, wouldn't hire me since they said I was overqualified. Recently things have gotten worse for me, especaily my MG symptoms so I have decided not to work at all. My brain fog is so bad I feel confused all the time anyway.
  6. Cipro is what caused my autonaumic dysfunction. I had only taken it for an eye infection and developed POTS immediately afterwards. Cipro also causes neurological damage so I would be careful, this is a very strong antibiotic. I know several others from a different forum who have neuo damage from flouroquinolones and who also developed POTS after taking these antibitics.
  7. I have this too for 2 yrs now. It started after I started taking a beta blocker for pots and now my symptoms are like full blown myasthenia gravis. I have a lot of facial muscle fatigue, gets worse with activity. I hope you don't have that.
  8. I don't think it was from a virus cause I am still having ringing and problems for 3 months now and it was worse when I tried to take the Lexapro again. It started in my left ear and now in my right too. I tried a decongestant at the beginning thinking maybe I had some extra fluid built up from an ear infection, but had no relief.
  9. I am not sure what ammonia smells like, but sometimes my urine has a burnt tire smell. Sometimes ketones spill in your urine in your body's response to stress or people who are on low carb diets since they put a little stress on the kidneys.
  10. I was dx with pots but my BP does not drop either, only my HR goes up upon standing and activity.
  11. Does anyone know if the hormones in birth control reduce the levels of serotonin in your body? I am on Nuvaring which I like because it produces a steady level of hormones but am concerned about it reducing serotonin levels.
  12. I have been taking Lexapro for POTs for 1 1/2 yrs now which is the only medication that has ever helped my POTs. After a while I started to experience some ringing in my left ear and dull sound. Then my right ear started to bother me. I stopped the med, and when I continued it again I had ringing and pain in my ears. Told my doc and he said that it can't cause hearing loss, he always dismisses everything I say so am looking for a new doc anyway. Now I am very miserable with my POTS, mostly laying flat and feel like I am at square 1. I can't take beta blockers since they caused MG symptoms that I still have.
  13. Thanks Madeline, it is hard having 2 different diseases. It seems that the medicines I take to treat one thing aggravates the symptoms of the other disease. I love your quote, Jesus take the wheel.
  14. Thanks Tammy for the support. I know not to stop the Lexapro suddenly, actually I am still taking it until I call my doctor to ask for a different SSRI. I just wanted to know if there are any other SSRIs that helped others with their POTS symptoms. Thinking about asking to try Zoloft.
  15. Just wondering if anyone had this side effect of taking mestinon. I have been taking it for myasthenia gravis and it was helping, but then after taking it for a couple weeks it made me feel very foggy, to the point where I felt a little confused. Finally something that helped made me feel so bad. I called the office and they said it shouln't do that, well it did! I feel that it aggravated my POTS symptoms and now I can't take it. Having a very hard time with my medicines, very MISERABLE!! I don't think my doctor knows what to do anymore.
  16. Hello everyone! I haven't been on this site for a very long time, my POTS symptoms seemed to have minimized after I started taking Lexapro and I had very few symptoms. Had a little stress and BAM, POTS returned. The stress is gone now, I increased my Lexapro a month ago, but it's not helping anymore. Not sure if my body is getting used to the Lexapro, has this happened to anyone else? I need some advice for a different SSRI to take. I can't take any beta blockers since I have developed symptoms of myasthenia gravis and Lopresser made my symptoms come out. (Negative for all antibodies so no steroids thank God) I am really bummed, I just got a new job working with alzheimer's clients, now I am not able, I have to lay down a lot. It's already difficult enough not being able to continue my career as a RN.
  17. I have had the same thing. The slurred speech happened a few times and they said it was from poor blood flow to the brain, symptoms were relieved when laying down. The slurred speech went away I started on Lexapro. I notice I have the muscle twitching when I get stressed and am worried.
  18. red ,then purple.. it reminds of my patients in the hospital who are dying. Their legs look mottled.
  19. I had a lot of blood pooling in my legs until I started taking Lexapro, it works as a vasoconstrictor. Have you tried a SSRI yet? I don't think I have EDS.
  20. I saw this on the news too and said to my husband I bet he has pots! Hope he finds a good doc who is knowledgeable.
  21. My feet and legs do this when I have been standing too long or when I get out of a hot shower because of blood pooling and the heat causes a vasodilating effect on your blood vessels. After I started to take lexapro this got a lot better because the serotonin constricts your blood vessels. I still can't use my whirlpool tub, it makes me feels horrible! Bummer. Oh, and my memory loss and brain fog got better when after taking lexapro. This has been the miracle drug for me.
  22. When this happens to me I feel like there is a band around my rib cage and I can't expand the muscles very well, rib cage feels tight. Anyone else like this?
  23. I haven't been able to work for 8 months now. I didn't even imagine it would be this long and I don't think I will be able to return for a very long time, if at all. I had a very high stress job-registered nurse.
  24. I forgot to include that I have pretty much had a full neuro workup MRIs, spinal tap, EMG, EEG, and cardiac echo, all normal. Cardiactec- the lyme treatment failed, it did not help me at all, in fact it made it worse. Also my HR doesn't go up that high anymore since taking lexapro, it helps me alot especially with brain fog and blood pooling.
  25. It seems that my muscles are wasting away and have not been able to gain any back yet. Does anyone ever feel like they can't breath, like the muscles around you rib cage are tight?
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