Lukkychrm42

Supposedly hyperadrenergic means serum norepinephrine levels of over 600 ng/ mL so I would interpret those results as a positive... Is it possible that they meant "normal" as 'expected with hyperadrenergic POTS?' I might be twisting words around, but if not then does the NIH have different standards for it?? But then as being classified hyperadrenergic also depends on how the NE is involved, the numbers itself might not be enough for us to give you the answers you need! Hmm... hope you figure it out!!!

I have no wisdom but I've got some virtual hugs!! I'm so sorry you're in such pain. I hope someone can help you, but in the meantime, i'll be thinking of you.

Yeah they put in an IV line just in case there were complications. They gave me the nitro sublingual and then when it was over they gave me IV fluids to 'pump me up.'

Yup- I went to the doctor when I was 20 and she listened to my heart and said, "you have an abnormal heart beat. you should get it checked out." and that started the ball rolling. After a holter monitor test, my Dr. immediately put me on Toprol even though he didn't know why it was beating so fast sometimes.

Hmm what comes to mind right now? Ah how about my butt goes numb?? Is that peculiar? Not just sitting either.

yup it's a common trait among us. I only notice it (not looking in the mirror) when I become really light sensitive and my eyes start watering- especially bad in natural light, and they just don't want to shrink! I wear sunglasses most of the time outside and always when driving, but the dilated pupils often indicate a more symptomatic period.

My cardiologist is in Boulder, and while they're not experts, they diagnosed me, and they're willing to work with me.. I go to Dr. Holland at the Boulder Medical Clinic and also see his PA Hilary Clark.

I found that article online awhile ago and was mad that no one told me about the doctor there from Richmond!

I'm sorry you're having migraines and I hope they go away soon! For what it's worth, I had a headache for about a week after stopping the cortisone (another steroid) they put me on for pneumonia, and it might be from withdrawal or something... but I didn't get them much while on it, nor while on Florinef last year... Sorry I'm not much help, but I hope your headache stops ASAP!

Oh yay! I wish you the best of luck with it, Melissa!!

It's true! Plus they've probably all heard of dysautonomia since it's so common in cats and dogs!

Thanks for all your input, ladies and gents. It wouldn't have occured to me at all (especially being treated like that by the other reps), but the woman who wheeled me was just chatting, and I think she said, something about 'now maybe you could help me out' but I wasn't sure, and at that point I was so out of it that I was a major space cadet and not listening, and moreover confused as to what I could help her with! I didn't have any money except for 20 pound notes, so there wasn't really anything I could have done. There are just so many people you are supposed to tip in America, it's crazy! It's like a hidden culture of bribery or something. Plus, I've worked in restaurants and worked for nothing but tips, so I feel that's justified, but when salaried people or people who make real wages ask for tips, it seems unfair to me. On top of which, for people with disabilities, like Melissa said, things are more expensive, which is ALSO more fundamentally unfair since it makes living a financially normal life more difficult between work and treatment. I suppose if they charged a fee when reserving a wheelchair, they could be sued for discrimination, but if they can get people to give it willingly then somehow it's not the same thing? Sorry for confusing you

I definitely know what you mean. The few friends I have who are still in my hometown are seniors in college and really super busy (like I should be!). The rest call, check my websites, but often they're afraid to make the first move, especially if they know I'm not doing well, because they don't want to get in the way of treatment or sleeping or things like that. When really, the opposite would be better! When the sick person calls it feels like you're being a burden or you want something even if it's just company or someone to actually ask "How are you doing?" and mean it! Whereas when the healthy friend calls it's thoughtful and can really make a bad day so much better! Also, being in our early 20s means that a lot of our friends are out drinking and partying a lot, and they know we can't so they don't bother asking. My host mom here in Italy told me last night that one part of my brain told the healthy part of my brain that I'm sick, and that even if I feel bad, I'm actually OK. I got confused and thought she was trying to tell me that it was all in my head and I'm really in good health. But I misunderstood, and she was really trying to compliment my intelligence, saying that even though I'm sick, I'll still 'succeed' because I have too much going for me.... which was COMPLETELY from the point of view from a healthy person who doesn't really understand the idea of being fx completely bedbound (which I'm not, thankfully), and the idea of success being linked only to determination, but she just wants me to be optimistic about the future. So clearly people in general don't know what to say, nor what they mean by it, and especially not how you'll take it. Anyway, try talking to your friends and tell them that since you can't go out with them, it would mean a lot to you if they would stop by once in a while or have a movie night at your place or something. Chances are they're not doing it to hurt you. maybe they're feeling hurt, too, because they don't know what to do, so help them understand. And for now, enjoy the ice cream!

When I was at Vandy in August, I had the same kind of thing happen. Dr. Raj talked to me about it briefly.. I believe their study on it just came out last February, because that was really the only relevant hit I found on google. I don't really understand it, except that while it's supposed to be related to mastocytosis, it's not quite the same... They did the 24-hour urine collection, and I guess as there's SO little research on it, it's harder to treat... Plus, with mastocytosis there's dermatological and systemic, and I believe the MCAD is related to systemic, so I don't think that it can be dianosed with a skin biopsy the way the other kind can. I could be wrong! That's just what I gathered from the mastocytosis website. Keep us posted! And I agree on the kids bit, Morgan!

OK this might seem dumb, but I was wondering if you're supposed to tip the customer service people in airports who wheel you to your gate and whatnot. It seems unfair if you ask me, but the last time (and first time) I did it, I kinda got the impression that I was supposed to. Long story short, I have to come home early from my study abroad program and although I've avoided flying since last fall, now I have to do it 3 times to get back home! I mean when I feel like this I don't want to worry about making a social faux pas, but I don't want them to expect it and not get it... of course, the last time, I waited 2 HOURS for someone to pick me up from the check-in area sitting on a bench flagging down every customer service person who walked by, and they all gave me these really skeptical looks and brought the wheelchairs out to elderly people. I ordered one with my ticket! Thank goodness my mom had to leave town and dropped me off 4 hours early! Ooh I should have written a letter, but I didn't. So anyway- anyone want to chime in here? THanks!!

I like the NDRF handbook. I also went to Barnes and Noble last summer to try to find something, anything, about "how to deal with a chronic illness" or some such nonsense, and apart from the fact that the woman I asked was quite rude about it, I looked in the health sections, conditions section, psychology, and self-help sections, and found nothing. So that Chronic Illness workbook sounds awesome. Thanks for asking, Pooh!

I hate the idea of vaccines. blech. BUT I've had them all... all the ones on your list anyway. I can't say for sure whether they hurt in the long run, but they didn't cause any immediate adverse reactions at any rate.

The recommended amount for healthy people is 8 cups per day, which equates to 2 liters. If you're chronically dehydrated like lots of us, you'll need more. I drink about 4 liters per day, but I'm still always thirsty! Very strange. I haven't been told an amount to aim for by a doctor, either, though. I carry water bottles with me everywhere, and drink water with meals, snacks, so there's always water in front of me. Good luck getting some answers!!

Yeah, I can live with the tachy/BP issues- they make me scream, but thankfully I can still function with them. For me, I want to have energy again. I want to not dread having to walk for a block or having to crawl up the stairs on hands and knees because my body is so lethargic that even raising my hand or standing up wears me out. So I'm ready, get out the magic wand!

Hey there, Thanks for checking in with us! I'm glad that you got admitted and that things seem to be going well so far! I hope they find something that works for you! Love, Megan

Sweet! That is so awesome! I'm glad things are getting back to normal for you! Here's hoping they continue!!

I haven't fallen off of the face of the earth, I promise! I was travelling around England for a couple weeks, and then I moved to Italy on Saturday and since then have been bedbound with momentary exceptions for injections of nasty antibiotics and steroids that have quickly become a pain in the posterior (literally!) I am quarantined in a hotel for now until they decide I am not contagious and let me go live with the host family. I hope everyone is doing well and enjoyed their holidays!

Hi Rita, At the risk of sounding silly, might I suggest that you change what birth control you're on? I don't remember if you posted what you were taking, but there are lots of options besides the pill (low dose or otherwise)... diaphragm, shot (no idea about this and POTS), ring, IUD (I've been on this for 2 years and it hasn't raised my BP), etc. Also, you could discuss the risks of high blood pressure with your doctor..as long as it's not dangerously high, you should be OK, right? So if keeping you propped up with a high BP and salt and stuff makes you feel better, as long as it's safe, so much the better, right? Plus, the birth control is probably wreaking havoc with your hormones, and if your symptoms are linked to estrogen, maybe your body is still getting used to the changes?? As far as the blood volume theory goes, I have no idea... my blood volume was never tested before going on birth control, and now it's quite low (plasma and cells), but salt is not helping me to retain water.. or at least it's not helping enough... If your volume is decreasing, the spikes could be your body's response to it, but I don't know. I hope you figure something out!!

I have a 30-40% hearing loss, but it's never been linked to dysautonomia. It's supposedly due to the incessant ear infections as a baby, 5 surgeries, and hardening ear drums.... but it is odd in that it's from nerve damage, as opposed to a conduction problem.. hmmm.. but anyway, I have hearing aids but I never wear them. Most of the time I'm OK, I just have to ask you to repeat yourself a lot! Especially if it's a noisy room- then I'm miserable.

It makes sense that anxiety is so common among sufferers of chronic illnesses. I mean, it's quite a stressful situation, isn't it? I think I have more of a tendency toward depression, but I imagine that all people with chronic illnesses have some emotional repercussions at some point.