shannon

Ernie, I can't believe the doctors kept you upright like that...when they know you have orthostatic intolerance. That must have been a very scary experience. I can see why you wouldn't want to do the other tests. I hope you will be feeling better soon. Best wishes!!

What great news!! Congratulations

Hi, My first major sign was a near-faint (totally blacked out, couldn't hear anything) at the age of 13. For much of high-school, I was chronically fatigued and weak and experienced episodes of high HR and low BP. There were many symptoms that accompanied this. Some of them include: --Chest pain --Migraines --loss of sweating --lightheaded, dizzy, palpitations --excercise intolerance --heat intolerance --poor concentration at times --funny feeling in legs (and sometimes arms) ... like they are really heavy or something. --noise and light sensitivity --flushing --big pupils --tingling, cold It is difficult for me to remember what my very first symptoms were because I wasn't diagnosed until the aged of 17 --- quite awhile after my symptoms began. Also, I think that POTS can be cyclical in nature---I don't know if that is what you are experiencing.

Yep, I get some pretty funny looks when I tell people that I have POTS. I usually just say, "my illness," which sounds mysterious enough too... oh well. That would definately be nice if the name was changed to something that was easier for the public to understand as a true illness.

I get (very sudden) shooting pains in my head too (sometimes the left side, sometimes the right). I'm pretty sure that mine are connected to migraines, especially since the last time I got one was when I was studying under a bright light. When this happens, sometimes it helps me to close my eyes and take deep breaths for awhile.... but I know that sometimes we're in situations where this isn't completely possible. For me, those stabbing pains are usually a sign that a bigger migrain is on its way. Everyone's body is different though. I've never heard of that ice headache diagnosis before.... that's really interesting.

Hi, everyone! I would like to work on conditioning my body, but many of the exercises that I try bring on my POTS symptoms. What sort of exercises have you found helpful? Also, are there specific exercises that you have noticed to be particularly difficult with your symptoms? Personally, I haven't found an exercise that works very well yet. Things like machine bikes, stair climbers, upper body weights....all bring on symptoms for me. I would love to hear if any of you have some better ideas!!! Thanks!

Sounds pretty familiar... I don't sweat enough in the heat either. My legs get heavy and I get migraines and lightheaded. I still haven't figured out very specific ways to prevent it. Mostly I just try to stay out of the heat, especially places where I'd be standing. Obviously hydration is important. Maybe compression stockings would help since you said your legs were pooling. Sorry I don't have more ideas!!

Hi, Wow. People can be so ignorant about illness sometimes!! I'm a college student right now, and I dealt with a couple of teachers like that in high school. I think Chrissy has the right idea talking to the head of the department. Maybe it would be a good idea to have the disablities office contact the math department before fall semester is over. That way there would be some powerful voices backing you up. Hang in there!!

Mestinon (180mg time release, each morning) has helped me the most (so far). I still have some symptoms (especially fatigue), but my HR does not go crazy like it used to and I am usually able to keep up with my daily life.

I'm so glad your vacation went well!! Very encouraging Hope you keep feeling well !!

I've learned that even a little alchohol usually causes my symptoms to worsen. It makes sense, as some of the other posts have noted (with dehydration, etc). It's interesting that some of you have the opposite experience though. I guess bodies react in different ways.

This is so interesting that you've braught this up!! When I was 14 or 15 years old, I dropped a thermometer in my bedroom and accidentally touched the mercury. Some of the mercury also seeped into the hardwood floor cracks in my room. It was not long after that I got sick. I've always wondered if the two were connected....Who knows (???). I should probably get tested.

Yeah, I have had similar experiences. Sometimes I feel my heart pounding, and I feel that I am about to pass out, but when I check my pulse and BP...it is normal. This began happening after I started on medication for POTS. For me, I think that sometimes the meds can fix my racing heart beat and low BP, but I still get the symptoms. I don't know. It is so confusing sometimes. I don't talk to friends about it either. It is difficult to be sick without exact evidence to point to, isn't it?

Just the idea of the general public reading about POTS and other dysautonomia is fabulous. There are so many doctors who are clueless about the illness!!! I think a book with personal stories has great potential to drive attention towards the topic, even if we can't get the chicken soup series to do it.

Hi Corina, I'm pretty sure Mayo Clinic would see you ASAP if you contacted Dr. Low's desk in neurology. When my local doctor called mayo for a referral, I had an appt with Dr. Low within a couple of weeks. Give it a try ---- Dr. Low is great!! Good luck and take care!

Everyone with POTS has probably dealt with this general ignorance. One piece of advice I have is not to internalize what's happening. I know there have been times when I've believed that I am lazy for being sick (crazy, right?! ). We have a right to take care of our bodies. I think sometimes, with chronic illnesses, it is easy to forget that. So don't ever feel guilty for slowing down and taking care of yourself!! You aren't being lazy....you're being smart!

Hi! My name is Shannon, and I am new to the forum. It really is a great feeling to know that I am not alone....or crazy. I'm 20 years old, and I've been dealing with POTS for about 4 or 5 years (my symptoms are sort of difficult to trace back). Still, when someone asks me to explain what POTS is, I don't even know where to begin. That's why DINET and this forum are so wonderful. It is one of the very few places where I feel that I can say "POTS"...and there are no confused looks. I finally feel understood. Thanks so much for sharing your stories---they've been an inspiration. I plan on posting mine sometime soon. Take care! Shannon *POTS, chronic migrains *Mestinon, Topamax