dsdmom

I have to agree - you really should still think about a sleep study. And if that doc isn't willing to do it then find another who is. Fatigue should be looked into. I use a bipap - I don't snore - am very thin - definitely NOT your 'typical' sleep apnea patient. In fact, I don't even have apneas...I have upper airway resisatance sydrome - which leaves me ridiculously fatigued if not treated.

Just be careful with the muscle relaxer - they are designed to relax blood vessels so you could feel more symptomatic on them.

Thanks Flop. I am so sensitive to meds that my body just might need to adjust. It's just hard being so out of it during the day w/ a 2 year old to take care of. I took a 3-hour nap this afternoon (ridiculous I know) and when I woke up I was so dizzy and nauseated that I vomited. I spoke w/ my doc tonight and he wants me to stick it out a couple more days to see if these side effects abate. Of course that means not dropping on my prednisone yet...when will it end??? Anyway, what side effects did you have for those first 2 weeks?

Last night I took my first dose of nortriptyline. I was prescribed this for pain & sleep issues that I have been having lately. I've been waking up in tears because everything hurts so badly. My doc prescribed 10mg in a capsule form. I dumped out 1/2 so took 5mg and immediately felt drowsy (but nice!) but then it wore off so I took another maybe 3 mg for a total 8mg. I slept GREAT. Did not wake up in pain but did wake up @6am and took more tylenol. Fell back to sleep until about 9am. But had a very hard time getting going this morning. Felt very light headed and tachy even though I wasn't that tachy. And my bp really hasn't been too low either, I just feel really out of it and dizzy. The pharmacist said a hangover feeling would probably go away in a couple of weeks if I got one. anyway, my question is - do I stick it out? I hate feeling so out of it and that makes me have zero patience for my 2 year old daughter which is unfair to her. I really need to drop on my prednisone tomorrow (am starting to get puffy face) and am afraid I'm overdoing the whole thing. But, the doc said it could take a few days for the pain relief properties to kick in and I did sleep great....so it's a toss up. Just wondering if anybody else has experience w/ nortriptyline or elavil (amitriptyline). I am so tired I don't know if any of that made sense!

First of all, good for you for putting yourself out there. It's not easy - healthy or not. Just be yourself and relax - have no expectations and that way you can't be disappointed. Let us know how it goes.

Hard to do with the stomach flu, but you really need to try to stay as hydrated as possible. Anything you can get down - popsicles, etc. You may benefit from pedialyte pops - that way you'll get much needed electrolytes.

Melissa, Hang in there....sending good thoughts your way.

Lenna, Who was the GI you saw? Was he @ Beth Israel?

Hi Rachel, Thanks for the update. I will be thinking of her and sending good thoughts her way.

I would say that warning you read does not apply to you - it applies to patients with myasthenia gravis, which is what mestinon is intended to treat. Those patients can have a "myasthenic crisis" during which the weakness in their muscles would be severe - so much so that they would not be able to breathe on their own. So the warning is just saying that the nasacort may decrease how well the mestinon works - and if you have mg, you'd have to be careful. Try it whenever you feel ready - has your doctor agreed to let you start w/ a lower dose?

I've had the same thing happen. It's always been a few hours afterwards.. my doc thought maybe I just pushed it too hard. Wasn't all that concerned - just told me to watch it.

Just something to keep in mind...if you truly are having issues w/ urine leakage, you may want to find a urogynecologist. They specialize in that sort of thing.

I wear 30-40 mmHg thigh highs and wouldn't go without. I switched from 20-30 to 30-40 about a year ago and noticed a huge difference. I would definitely give it a try.

Lindajoy, Good luck - I'll be thinking of you. I hope that it all goes smoothly. And I totally understand your issue with teaching hospitals - I am the same way. No patience! Anyway, hopefully you'll have a great experience. Keep us posted.

I completely understand what you are feeling. I've been having some "flares" lately that seem to be related to viruses (or something else?) and it's always so scary for me because I get worried that I am getting worse. When, in actuality, I usually go back to "normal" but it just takes time. Regardless, hang in there...I know it's no fun!

Welcome, Candace!

I had an eating disorder but had recovered (like you said - lots of work!) about 10 years before my dysautonomia developed. I had a wide range of things that contributed to my dys and I do not believe that my eating disorder played a part at all. That certainly doesn't mean that it didn't affect you though!

I take xanax occasionally now. I used to take Klonopin. I had a hard time discontinuing Klonopin but that was after a couple months of continued use. I will say, however, that I feel like my ans issues are always a bit more pronounced the morning/day after I take a xanax. I take it at night, like you would, for sleep. I think you just need to tell your doc what you're thinking....it should not be a big deal at all.

Hi, I just wanted to add in my 2 cents about BWH (Brigham). I live in the Boston area and have spent a ton of time @ Brigham - both before I was sick (I was a sales rep and worked in the OR there) and since I became sick. Overall, it is an amazing facility. However, it is NOT a place to go for dysautonomia, but I have heard wonderful things about Dr. Castells from my pulmonologist @ BWH. But, it seems like you are concerned that if it's not masto, then what? Could Dr. Castells not admit you for testing? Could you get in touch w/ her ahead of time and try to come up with a plan if it 's NOT masto? That you don't want to be sent home w/ no answers - can she then point you in another direction, etc? Good luck....

Good luck, Ernie. My thoughts are with you.

I am so sorry you're in for another trip...I am sending good thoughts your way. I hope you can get back home soon... Good luck.

Hi Seth, I'm sorry to hear about all the problems you have been having. And you're right - it definitely blows!! Are you being treated by a POTS specialist? Hopefully things will improve for you over the next few years...but again, I am so sorry that you are missing out on your senior year and all the activities you enjoy. Hang in there - and we'll all be here to support you.

I actually ended up getting crazy PVC's on it....so I discontinued it. Mine was not IV form though.

EarthMother, I don't know who your long term disability carrier is, but I have the same clause in mine - that if it is based on MENTAL HEALTH they only will pay 24 months for a lifetime. I was approved based on PTSD/depression - although I was struggling w/ my new illness, I did not yet have a diagnosis. My 24 months is coming up early next year and I just received a notice from them reminding me of that fact....However, it did also mention that unless there was ALSO a physical component, my $$ will stop. Maybe once your 24 months is coming to an end your secondary may become your primary?? I don't know - I mean I know these people don't like paying. They call me a lot but never leave a message - I'm sure to check in. When I do talk to them they ask how I'm doing - like they really care. They just want to hear me say "fine" so they can say that I am ok!!! Anyway, I hope that in your case the company will have to take your physical symptoms into account after 24 months.

Thank you so much for the info! Butcher's Broom is something I was thinking of trying a while back but never did. I did do Licorice for a while until I figured out that it was the licorice that was causing me major chest pain (related to reflux). Guess some people can have that reaction...while for others licorice can help their reflux. Guess I was just a lucky one.... Anyway, this is great info to have...I may take a look at this again. If my memory serves me correctly, butcher's broom is supposed to work like a miler midodrine. Actually, a pharmacist I had been working w/ had me take something similar that has been studied extensively in Europe and now I can't remember the name - think it started w/ a D. Anyway, I didn't tolerate that...felt like I couldn't breathe well. So maybe butcher's broom would do the same thing..who knows. At any rate, thanks again for the review! Edit: Just remembered the name of stuff I tried: Diosmin