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About Susan3

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  1. Hi Gemma, Congrats on your pregnancy! Below are links to 2 articles you may want to review with your doctors. I have delivered two healthy babies with no major complications. I was under the care of a high risk doctor at a teaching hospital, which if anything, made me feel secure that they were taking POTS seriously. I met in advance with the anesthesiologist to come up with a plan for how my delivery would be handled. A c-section is major surgery and they thought there was no reason to plan for that scenario in advance unless an emergency situation arose. Personally, i agree. The anesthesia
  2. That is exactly what happens to me. Its incredibly frustrating. Im almost always okay with just walking and maybe very easy floor based pilates-but it's very hard to not go overboard and end up with those night time jitters and extreme fatigue with muscle achiness. Sometimes magnesium helps a good deal, specifically taking 'Calm' before bed on the night i exercised.
  3. Gjensen-my chest pain sounds similar to yours. I have it first thing in the morning, with exercise, and stress and sometimes random. Its clearly what i refer to as "heart pain" because i know its not a sore muscle, rib, or nerve pain and its specifically on the left side often migrating up my neck to my jaw or down my left arm. Ive had many workups and only the usual POTS type evidence has resulted (sinus tachy, minor PVC's, minor regurgitation). Im really starting to think i may also have the vasospasms. Do you have Raynauds by chance? Wondering if its like raynauds in the heart???
  4. Ugh....unfortunately i often feel worse. I have learned that i can usually tolerate 1, maybe 2 glasses of red wine but that is it. Anything more and i pay the price the next day by feeling like i had 10 drinks instead of 2.5!! I will also wake up in the middle of the night with a racing heart and nausea. . Hard alcohol makes me feel bad as does white wine. Not sure why, maybe the sugar content. In those is higher?
  5. Def helped my sleep. Very few side effects other than craving carbs. Good luck.
  6. Rachel, It's could be a long shot, but when I was a kid I had strep throat infection that would not go away. In fact I also tested positive while on antibiotics.....At the time the nurse was incredulous. The doc asked if my toothbrush had been changed out....which it hadn't, but doing that along with a shot of antibiotics finally, kicked it. Best of luck
  7. I'm glad to see this topic on the forum! About 6 months ago my doc said I should stop drinking the over 2liters of water I was downing daily and instead just drink when I am thirsty (like a normal person:) ). He said to continue to keep my salt intake on the high side. I'm surprised about how much reducing my water intake has helped. In particular my cold hands and feet have maintaned a more normal temp. So now instead of forcing down a ton of water every day, I drink when I need to- which is probably about 4-6 8oz per day.
  8. Yep! Feel free to PM me. Dysautonomia international is based out of dc/md/va area so also maybe a good resource for contacts. Ter dis also a chronic fatigue group with a NOVA chapter and I think several of the members also have POTS.
  9. Have you had your testosterone levels tested? If they are low, that can affect your ability to build muscle. As for feeling weak and tired, that's par for the course for post exertional malaise and POTS, unfortunately. For me the hard the push the weaker i tend to feel. Perhaps talk to your doctor and a physical therapist to design a program that might help. I finally realized that with exercise i have to take it easy and stop while i'm feeling my best rather than push too hard. Best of luck.
  10. I definitely can not have novacanine with epi as it causes significant tachycardia, fatigue, tremors, etc......a few months ago I needed a cavity filled and had the novacaine without epi. I was really nervous about it but I had absolutely no problems! Per all the postings above, some of us can tolerate epi and some can't. I suppose you can always just ask for the novacaine without epi if you are concerned. Good luck:)
  11. I also get the ectopic beats and find it challenging to get my heart rate down after a more intense workout. My more intense workouts are often by accident in that I overdid it but often don't realize it until it's too late. I will also have an overall body weakness that makes me feel like jello. When I over do it with exercise I've found that taking magnesium (I prefer the powder form that dissolves in water) before bed that night really helps, otherwise my body is so stressed/exhausted that I'm just uncomfortable and can't sleep. It's quite frustrating because I will think I'm having a good
  12. Good questions SpinnyC. I imagine everyone is different in their experience and I can say that I was lucky to not have vomiting during pregnancy. If I did I imagine POTS symptoms would have been much worse. Before I got pregnant I finally felt 'stabilized' for a few months beforehand, but I didn't feel great. It was pretty much the first time in 3 years I didn't feel like I was dying-and it was because I started taking midodrine and really watched my triggers (exhaustion, alcohol, carbs, too much social time, etc...). The first trimester I was exhausted but the difference was that I could actu
  13. Hi, I have had 2 uncomplicated (fortunately!) pregnancies with a POTS diagnosis. I consulted my doctors before getting pregnant and I founds meds that helped stabilize my condition (metoprolol and midodrine). Most docs said I would either feel much better or much worse.....not all that helpful. None said it would be a bad idea to get pregnant. I was high risk and saw a maternal fetal specialist for both pregnancies-I had wonderful medical care and stayed on my meds for most of pregnancy. I felt fantastic with my first and was able to go off all meds because I felt so good. I imagine it was bec
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