jknh9

Hang in there! I'm glad you have people going to bat for you. 10th grade is hard enough already! I can definitely relate, although my symptoms didn't become debilitating until I was about 24, and at 26 I had to miss tons of classes in my Master's program. I was able to finish last spring, although I had already been accepted and enrolled as a PhD student for Fall 2011, which I had to give up because of POTS & NCS. I work from home as a researcher these days, and when I think about my schedule in high school, I feel how far away I am from functioning at a normal level.

My heart rate jumped by 70-80 bpm, I think, within a minute and my blood pressure bottomed out (though it is always low anyway) and I fainted in the upright position within 4 minutes of being up and then seized while I was unconscious. I was unresponsive for maybe only half a minute (hurrah for IVs!). I have both POTS and NCS, though. Even though I'm in good physical shape and I used to be very active, my normal resting heart rate is quite high, 80-90 bpm. I know on the table it hit 160 while the table was still coming into the upright position, so it might have jumped more once it had stopped moving but I'm not sure. I just know that while it was moving, the doctor asked "Does this happen every time you stand up?" I said "Yeah, pretty much" and he said "She has POTS" right when it stopped moving. IceSkate, I'm not sure about the answer to your question, but I have noticed that sometimes people who only have POTS and nothing else (known) seem to have smaller jumps in bpm. This is just anecdotal, though, from things I've seen on forums.

toddm1960, it varies for me. I don't have PENE, I have POTS, NCS, and panic disorder. Sometimes, especially with the recumbent bike, I feel fine the next day. Often with yoga, I'll feel terrible the next day and need to sleep for a long time once I get to sleep-- overdoing exercise also makes it hard for me to fall asleep (probably because of excessive adrenaline). Last Monday, I overdid it with 20 mins of yoga, 15 mins of leg & buns exercises, and then a 45-50 minute walk. I felt awful for the next several days-- lots of trouble waking up, getting out of bed, plus feeling super dizzy, nauseous, headaches, and lots of occurrences of pre-syncope. I don't know if it triggered a flare-up or what, but it's Saturday and I'm still feeling crappy, which is unusual for me :/ You just never know what this disease is gonna do to you!

I agree about the recumbent, but I recommend using a stationary one rather than being out on the road, just in case. Plus you can watch TV, read, or lift weights while you do it. I love mine.

For me, going up one flight of steps makes me feel 10x worse than walking a mile on a flat road. I walk quite a bit, but mostly on flat surfaces and not pushing myself to go too quickly. I always make sure someone is walking with me, and I take lots of water or electrolyte drinks with me. I couldn't do that much over the summer or right after I was diagnosed in late spring but I can do it 3-4 days a week now. The other exercise that is usually recommended is a recumbent stationary bike. I love mine and I found it helpful in building up endurance over the summer when I couldn't walk. It probably also depends how active you were before you were diagnosed and how bad your case is, I would think. I was super active before diagnosis, doing about an hour of kick-boxing, yoga, or elliptical per day and in school I was a sprinter in track and I did fencing and marching band. I can't do yoga hardly at all now because the up-and-down sequences make me faint. I can do some aerobic activities, but not like before and not for very long. Whatever you decide to try, definitely start slow

Within the last couple of weeks, my palms have been getting extremely itchy, especially the right one. They also feel swollen especially at the base of the palms, and like the skin is extremely tight. The skin is a bit more red and they look a little swollen. They aren't hot to the touch and not really blotchier than usual. I have POTS and NCS and a heart murmur, is this related? I'm only on Zoloft 100 mg right now, and I've taken Zoloft for years. I was on Florinef over the summer but stopped in early September so I don't think that would still be affecting me. The only allergy I know I have is to the medication tetracycline and bee stings. I was tested for allergies in 2008 and they came up with nothing. I am really stumped about this and starting to worry. Today it's been going on all day and I just keep putting hydrocortisone cream on them to make the itching ease up. Does anyone have any insight? Do you think this warrants a doctor visit?

I had a root canal done in the spring and there is no metal involved in mine. The thing I had an issue with was the injection. I had this done before I understood about epinephrine and what it does to people with POTS/NCS. I had a terrible reaction to it and fainted in the chair and had stomach issues and felt gross the rest of the day. Although now that I know, I've talked to my dentist and they put a note in my file to give me a different type of injection in the future should I need one.

My cardiologist recommends doing the recumbent bike for 40 min 4-5 days a week, or subbing a couple of those days with other exercise such as a long walk, water aerobics, or cardio aerobics if I can tolerate it. I can't do intense cardio for very long but I do the recumbent and take a long walk frequently. I used to do yoga, but even on meds I faint now from routines that have a lot of up-and-down pose switches. Lately I've started doing dance workouts based on hula and Tahitian dance, which are so much fun. They are great for muscle tone but don't have a huge range of intense movement like aerobics. My doctor also recommended the elliptical, but I worry about that since if I faint on one of those, there are a lot of things I could hurt myself on.

Urban, in downtown Columbia SC. Although I started having symptoms over a decade ago when I was in middle & high school, and during that time I lived in a smaller town outside of Columbus, OH. I have another friend who now lives in rural Ohio with dysautonomia but who went to school with me. Interesting.

I can't say anything with certainty about interactions with vitamins and supplements, but I got awful headaches on Florinef 0.1 mg. I was on it for about three months. The drug interactions that the pharmacists warned me about were aspirin and ibuprofen as both can cause stomach bleeding if you're on Florinef. They said the only safe painkiller was acetaminophen (Tylenol) which was terrible for me because my headaches never responded to Tylenol. The pharmacist also told me that it could interfere with birth control pills and make them less effective.

Thanks for the info! I never thought of trying stuff like that before. I hate Gatorade and I'm always trying to figure out non-disgusting ways to add salt to my diet. And just to chip in a recommendation, I recently started getting Nuun brand electrolyte drink tablets. You plop one in a glass of water or water bottle and it fizzes (not unlike Alka-Seltzer). The flavors are a little out there (Lemon Chai!) but they have more sodium than your regular electrolyte drink or drink mix. I get mine at Earth Fare, but I would suspect that places like Whole Foods would have them too.

I'm very interested in your experience with Lexapro since my cardiologist is considering switching me from Zoloft to Lexapro. Is there a reason your doctor is doing Lexapro rather than other SSRI?

I voted "4" but now I'm wondering. I guess "good" is a pretty relative term, isn't it? I said four because I'm guessing that's the average of the time each week I'm "OK"-- I can do things like laundry, cleaning, working from home, running short errands like going to the bank. I rarely have a day where I'm flat on my back all day long. But, on the other hand, even my good days are not "normal." I can't get up at 6:30 like my husband, I have sleep disturbances every night, I can't eat at the same time each day, sometimes I'll think I'm doing all right and then nearly pass out, etc. So, while I don't have "normal" days at all, I do have days that are "good" for me, and the good outweighs the bad these days

I don't have any sure-fire suggestions but I think it's a great idea. I really wish there was a group in my area! I think it would be so helpful to connect with others. If you're near a big university, you might try getting in touch with the student health center since a lot of them have various support groups. By the way, you're not in SC are you?

I had all sorts of side effects when I started Zoloft. For me personally, starting at 25 mg was too high, but I found that out after a few days and didn't want to make myself feel worse by backing off at that point. I didn't have side effects until about 2-3 days in, then I had crazy insomnia, severe nausea, palpitations, light-headedness, complete loss of appetite--basically two weeks of ****. I'm just glad I didn't start at 50 mg like my doctor at the time told me to! Yikes! For me, Zoloft has helped, but it hasn't made all the symptoms go away. I'm up to 100 mg now.

I am mostly housebound because of dizziness, fainting, and nausea that all seem to come and go. Some days are worse than others. I can do moderate exercise and if it's cool enough outside I can do a moderately paced walk for up to 2 hours or so (although sometimes I have trouble sleeping after that). I work part-time from home and I am able to set my own working schedule. There is just no way I could handle a "normal" full-time job right now. I hope to be able to at some point.

I was wondering if any of you are yoga practitioners? Yoga was one of my favorite things to do once upon a time, and I've tried to keep up with light practice, but around the time I was diagnosed earlier this year, I noticed that doing yoga made me feel extremely ill and fatigued and I could do little afterwards. These days, I seem to have a slightly better tolerance for it, but some days I just can't do sequences with lots of ups and downs. I try to do only sitting poses, then only standing poses. My goal is (and has been) to work up to a great handstand, but I'm worried that won't ever happen for me because of the POTS. Today, I did a handstand prep pose with my feet up on the wall, and I lost my hearing-- that tinny, static-y sensation that happens before you faint. If you do yoga, do you take a class? Or can you recommend DVDs for me? I can handle 30-45 minutes of yoga on good days. Right now I really like Shiva Rea's Power Yoga Flow DVD because it's programmable and separated into types of sequences. How much yoga can you tolerate on a good day?

Count me in as well. I used to do intense aerobics and kickboxing pretty much every day, and quite a bit of yoga too, before I got sick. Now, I can usually force myself to muddle through 25 minutes or so of kickboxing or aerobics, but then I'm done for a few hours and I often feel sick that night. I've also noticed that if I do yoga that has a lot of up-and-down movement (standing to plank/push-up position and downward facing dog pose etc) I feel pretty bad afterward. I can usually take a 45-60 minute walk at a leisurely pace if I drink tons of water on the way, then I have to take it easy afterward. But one flight of stairs leaves me out of breath and my heart pounding. About feeling bad walking around a store-- I do, too, but I suspect for me it comes from the lighting and echo-y noise. I've always been sensitive to places like malls and Wal-Mart. It's like if I spend too long in one I feel a little disoriented and nauseous. My dad told me that he was the same way until about his 30s, so I'm not sure if for me it's related to POTS & NCS or not.

Hi all, I've been on Florinef 0.1 mg for a couple of months now, and it was difficult to adjust to it at first. I thought I was in the clear as far as side effects go, but the past few days, every time I try to take a walk outside, I start to get a dull throbbing headache that turns into a blinding pain within a few hours. It's been hot here, but not as bad as it was last month. I've been walking outside when it's anywhere from 89-93 F. These headaches hit and I feel extremely tired and pretty nauseous. I also feel like there's a lot of pressure in my head. Tylenol doesn't help at all, and the pharmacist told me not to take ibuprofen with Florinef. Is this normal? I just about can't take it. And has anyone else had this happen from Florinef? I suspect it has something to do with Florinef because of the pressure sensation, but I'm not 100% sure. Has anyone taken anything instead of Florinef that seems to be a better option?

It sounds like he rocked it! Good luck for the rest of the school year. 10th grade is a really tough year for anyone, let alone trying to do it when you're sick. That's great that he's off to a good start

I think it does depend a lot on where you have it done. Even within the US, they can really vary. They did an IV port before I went on the table and hooked me up to the IV but didn't have it dripping while I was flat. I was flat for about 25 mins in a dim room by myself, then the doctor and nurse came in and tilted me up. They said if there wasn't much of a reaction that they would give me a nitroglycerin tablet (not an injection), but I fainted and went into a seizure about 3 minutes after being tilted up, with my heart rate raising by 60+ bpm. Then, the next thing I remember, I was flat again and the lights were on and doctors were standing around me asking if I could hear them, and the IV was dripping (just saline). They kept me for observation and waited for the IV bag to empty, and had me eat a sandwich and some fruit. I wasn't allowed to drive so I had my husband there with me. It was pretty scary over all, but was extremely helpful in my diagnoses (POTS and NCS/NMH). EDIT: Oh, and I forgot to mention, they had a BP cuff and electrodes hooked up to me that were connected to a machine the whole time, so they monitored my BP and HR the whole time that way. I think the cuff inflated every minute or so to measure.

I voted that my weight has stayed the same. I'm about 25 lbs lighter than I was a year ago, but I really started trying to lose weight early last fall through diet and exercise and my symptoms didn't really hit me hard until March of this year. I noticed it was easier to lose weight after that because I feel nauseous about half the time! But I don't think the POTS & NCS have been a significant contributor to my weight loss. I'm just a hair under 5'7" and I currently weigh 129 lbs.

You know, I wonder if it affects me. Yesterday, we had storms roll in here and that was the first time it had rained in weeks. It's been hovering at 100 or above here since June pretty much consistently. But yesterday, after several good days, I felt like garbage all day. I'm just not sure if it was because I had worked out pretty intensely for 3 days prior to that, had a big cup of coffee the night before, or because of the rain. I wonder.

Definitely see a doctor about it. I'm a fainter too, but I don't think I've ever been out for longer than a minute, maybe not longer than 30 seconds or so. Do you get an aura before you faint? Or is it just like you wake up and realize you've been unconscious? If it's really sudden, I know there are a lot of other things that could be going on besides POTS/dysautonomia. Ask a doctor and make sure they take you seriously. The first one I saw told me that fainting was nothing to worry about and I was fine (despite the fact that I had been feeling generally crappy and I hit my head and got a bloody nose when I passed out that time that sent me to the doctor's office). If a doctor tells you it's nothing, find another doctor. Being unconscious for that long is definitely something to be concerned about. Good luck, and take care.

I do at least one bottle of Vitamin Water Zero or Sobe Lifewater Zero every day. Some of the Sobe Lifewater Zero flavors are marked as having extra electrolytes, and all of the Vitamin Waters have quite a bit. I just have to be careful about the flavors of Vitamin Water that are supposed to give you energy (like the "Drive" flavor) because the yerba mate in it makes me all tachy. I do these instead of Gatorade or sports drinks because all of the flavors of those that I've tried taste awful to me. Way too much like Kool-Aid. I haven't tried coconut water yet. I'd like to, but it's so expensive i don't want to find out I like it because I'd go broke!