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Everything posted by Kay107

  1. I have had several regular EEGs, and a weeklong in-hospital EEG. One of them supposedly showed an actual seizure during the test (though I had no symptoms) and resulted in a year of anti-seizure drugs which worsened my then undiagnosed POTS extremely. The next neuro who looked at the results said "reading EEG's is an art" and I did not have a seizure during the test, nor do I have epilepsy.
  2. I have a lot of sleep issues as well and considered melatonin. I looked it up first and read somewhere that POTS patients do not do well on Melatonin. I am not sure of the credibility of the source, but I just didn't want to risk it. I went to a nutritional supplement store and tried a few of their nighttime recovery products. I settled on one that helped me get to sleep and stay asleep, and brought it to my nutritionist so she could make sure everything in it was ok to be taking. She said it had a lot of good stuff I need anyway and the only ingredient she didn't like was sucralose but there isn't very much. Perhaps try other avenues before the melatonin? I understand your hesitation, and I have heard from friends that if you take it consistently it is very hard to go to sleep without it, but I never did try it myself.
  3. My symptoms first appeared after a terrible case of scarlet fever at age 9. I often wonder if I had chicken pox at the same time because while niether myself nor my parents remember me ever having it, blood tests show that I have already had it. My grandmother has almost all the same symptoms as I although she remains undiagnosed, and two cousins on the same side also faint. So it almost seems as though I had a genetic predisposition to it and the scarlet fever set it off.
  4. I was classified as high risk solely due to POTS. The doctors didn't know much about POTS so they asked that I not exercise etc to keep my HR down. The maternal-fetal dr. did ask my EP to write an explanation of the anesthesia I was allowed to have in case of C-section, which we did end up needing. I was very sick the entire 40 weeks and had to have my parents stay with me as my exhusband was away for work almost the entire pregnancy.
  5. It takes me forever to fall asleep and then I often snap awake and once again take forever to fall asleep. That and the breathing problems are two of the most frustrating symptoms. The only thing I have found to help with the sleep is a nighttime recovery drink that I bought as a supplement to my weightlifting regimen. I tried a few different types and settled on one that worked the best. I fall asleep much quicker and stay asleep all night. There was one I tried that had the opposite effect and I snapped awake every single time I fell asleep the night I took it, it was horrible. So there was clearly an ingredient in that one that did not go well with my nervous system.
  6. Definitely. Higher HR and increased fainting when I'm sick.
  7. I agree with Naomi that it can go either way. I was on meds then stopped when I found out. During the pregnancy I was worse, and the morning sickness lasted the whole 40 weeks (one of the few studies I found mentioned this happened to all the women. But it was a tiny study so I wouldn't take it too seriously, it could have just been me). Then I was much much worse in the four-ish months after giving birth and had to go back on meds even though I was bf-ing so I wouldn't faint holding the baby. I finally evened out though. If I ever decided to try for another it would have to be during a time I do not have to work, because there is absolutely no way I could have worked through any part of that pregnancy.
  8. I barely ever get thirsty and I will only drink very cold beverages, mostly ice water. If it isn't cold I am pretty much never thirsty enough to drink it.
  9. I have always hated hot tubs and inch into the shower or bath even when the water isn't that hot. Never knew it could be related to my POTS!
  10. Yes, I had already been diagnosed when I became pregnant. I chose to go through the pregnancy without meds, and my OB sent me to a high risk OB to consult and make recommendations about my condition. The high risk OB said there is not a lot of research to be found on POTS and pregnancy but was able to make suggestions based on what he did find. The main thing that was done, and I can't remember if it was the high risk OB or my EP who wrote it, but someone wrote a letter to the hospital anesthetist to have on file in case I had a C-section because they said I needed a different cocktail of anesthesia so my blood pressure wouldn't drop. I did end up with an emergency C so it was good that paper was already in my file. Good luck!!
  11. Before I was properly diagnosed a neuro 'diagnosed' me with epilepsy. He said I even had a seizure during the EEG (though I felt no symptoms whatsoever). The anti-seizure meds made my symptoms so so much worse. I couldn't stay conscious for any amount of time, just passed out every single time I stood up or sat up. He sent me to a different neuro who said that "reading an EEG is an art" and I did not have a seizure during the EEG, nor did he think I had epilepsy at all. He put me in the hospital for a week with continuous EEG/EKG monitoring and that was how I finally made it to an EP.
  12. My breathing is also like that on or off the Midodrine. Most uncomfortable symptom!
  13. I would weightlift. You could start off small with light weights and a program with POTS friendly movements and go from there. I'm not sure of the severity of your symptoms and what you would feel safe doing, but even if it's a rough beginning, conditioning your leg muscles might help with your hypotension. I weightlift 5 days a week with a cardio workout two to three days a week.
  14. I can work. I have been living with pots since I was 9 so I don't really know what it would feel like not to have it, it is my 'normal'. I have flares that do make life harder but hopefully those don't become permanent.
  15. Started going to doctors at age 9, diagnosed at age 23. I was passed back ad forth between cardio and neuro the entire time until someone finally had the bright idea of sending me to an EP.
  16. I am a single mother. I have a boyfriend who works part time and goes to school full time but we don't live together. He does help me when he can. I have a four year old, I am a full time graduate student with a full time job and a part time job. My ex husband is in the military so he leaves for long periods of time but when he is home I have every other weekend to rest while he has our four year old. The stress of the last two weeks of the semester usually cause me to experience extreme fatigue that takes a long time to recover from. I do not have health insurance right now but my EP is great and treats me for free when I need something.
  17. I exercise heavy 5-6 days a week. I usually do a combination of weightlifting and metabolic conditioning (crossfit), and faint a lot during the weightlifting portion. Recently I have shifted my focus more towards the weightlifting with fewer metabolic conditioning workouts and I have been fainting WAY less, huge difference. So before I spent about 1 hour on weights + metcon every day, and fainted a lot; now I spend 2-3 hours on just weightlifting every day with a 7-10min metcon every other day and almost never faint.
  18. My grandmother and three out of four female cousins all have it, each of varying degrees.
  19. I usually lose consciousness, however there are times where I don't quite lose full consciousness but still lose muscle tone and fall. I assume that is what you mean. My vision usually narrows when that happens but I don't go out completely.
  20. I assume your talking about a cardiologist who is your doctor? I ask because a cardiac electrophysiologist specializes in heart rhythm, and would be the only one I would trust saying if it is okay or not. No, he is an electrophysiologist. I'm not sure howmany POTS patients he has. I live in a smaller area that has a very high elderly population.
  21. From the age of 8 to the age of 22 I was bounced back and forth between neuro and cardio, having ECG's and EEG's over and over again. Everyone kept saying they could find nothing wrong until at 22 a neuro misread my EEG and mistakenly diagnosed me with epilepsy. When his meds made me exponentially worse I spent a week in a hospital, and was told by a cardiologist that I should see a psychologist. Luckily I was passed to a better neuro who finally realized I needed to see an electrophysiologist. Once I got there I was diagnosed on the first visit with a TTT.
  22. Racer, I have wondered about the danger of it, my doctor always says that for a normal person to experience that it would be dangerous but since my body is so used to it it's not that bad. That was the same answer I got when asking about high heart rate during pregnancy (though never that high during preg). I am not sure how often mine gets to 250 these days, but it is always over 200 when exercising. I have thought about getting a heart rate monitor but my dr just never seems concerned about the hr aspect, he usually focuses more on my low blood pressure and fainting. I would definitely say that my dr treats my symptoms (fainting and lack of energy) without really digging any deeper into my diagnosis. I have no idea what type of POTS I have. He just adjusts my meds to keep me fainting as little as possible and that is pretty much it. I exercise a lot, and if I do too much in one day, it takes me weeks of extreme fatigue to recover.
  23. Yes. My doctor was not concerned so I don't pay much attention to it. Although sometimes I wish I could see an expert on POTS just to see what they might have to say about my condition/treatment. I'm not sure how experienced mine is with POTS. I pass out at the gym a few times a week, everyone there is used to it.
  24. Sorry to hear your symptoms have gotten so much worse. The same thing has been happening to me. I have had POTS for 21 years now (I'm 30), was finally diagnosed 7 years ago. I have always experienced an ebb and flow of symptoms, but a little over a year ago I got much worse and it has not abated, getting even worse in the last month. I suspect mine will be lifelong since I've had it since childhood but it supposedly does resolve itself in people who develop the condition as teens or young adults, so hopefully that happens for you!
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