the_dancer_grl

i'm in school for mus. ed. right now and don't know any online ones because the classes are so performance based (about half have at least some performance in them whether it be listening or actually getting up there and performing or simply a final that has a performance component. that's my guess as to why no online schools.

i lost count hehe, I think only 3 or four of the docs. i've had actually were dysaut. related though so that would be my number of second opinions, 3 or 4.

I get twiches but I don't know how to prevent/stop them, sorry.

Heather

Oh I do this all the time!!! Its sooo embarassing but I'm getting used to it now that the brain fog is getting worse, I'll have to write some things I say down once I go home (I've got finals this comming week so won't be talking to alot of ppl.) .

Heather

your "Favorites" list is full of just medical links. or is that just me? lol OCD.

dionna

Or when you understand the MISUSE of medical terms/procedures shown on tv

Yep Yep! Loving this post, it always makes me grin if not flat out laugh which is really nice somedays.

I get headaches alot but I got them before I got insomnia/sleep probs.

right-handed! (There is a poll going on about this you may want to look at as well!)

I understand- I'm getting that way myself but I've been feeling so ill lately I really haven't had time to make alot of friends here at college so I haven't run into that friend-wise yet. I would suggest a letter that he can read while you are there and then ask you questions about... its a starting point and you won't miss anything important because it will be written down, that's what I would do (I have a dictaphone and a pad and pen in my purse because my memory is getting so bad and don't get me started on the scare I had when I thought I'd lost my planner yesterday )

Hey I feel the same way. I almost faint and get all the pre-fainting syptoms but don't actually pass out and it does sometimes seem that ppl don't take you seriously unless you do. My sister doesn't understand especially (if we're ignoring several doctors... annoying really) because I've been getting worse but because I'm at college now she doesn't have to deal with me all the time so doesn't realize it? (giving her the benifit of the doubt because she's my sister and younger than me). But anywayz, yeah, I totally get what you're talking about, we can feel pretty bad and nobody gets it (no I can not run upstairs and get the laundry at the moment... or the fabulous "are you okay?" in passing from strangers as they continue along). Sidetracked again, been like that all week- yes, I understand where you are comming from.

Maybe Christmas Baskets with little ornaments that you can get for cheap or make/decorate as well as some baked goods etc.

Heather

I don't know why but it is true that off-brands aren't the same as the brand-name drug. My dad has a medication that simply wouldn't work for him in off-brand (he'd have seizures again) but an off-brand of something may work better for some than the brand-name because they're similar but different...just have to work on figureing out what works for you personally.

Heather

I've recently started waking up several times a night also but can't go see my doc till mid December so unfortunatly i have no idea why yet but just letting you know you're not alone.

Heather

I take an off-brand of Zebeta (a beta blocker) and it does the opposite. Actually my doctor is taking me off of it because yesterday 5mg took me too low so we're trying 2.5mg again but prob. will have to pick a new med. so sad because it was helping-well except the too low HR part.

I've had one doc. tell me NCS wasn't a dysautonomia and another one say it was (I think its because alot of docs don't know alot about dysaut.) so don't feel alone on the confusion front.

Yeah, artificial sweeteners, esp. aspertame give me headaches as well- I thought I was allergic because I was the only one I knew that this happened too but maybe not!!! I've learned to use little to no sugar in things like tea, etc. and now I can actually taste the difference between sugar and art. sweeteners (really odd aftertaste like a few seconds after you drink it if you notice it). That's my two-cents worth!

Heather

Yeah, I gained alot of weight in the begining because they thought I was hypoglycemic so they had me drink alot of juice and peanut butter etc. And eventually the meds that came with the changing diagnosises made me gain even more and now I can't really excercise to get the weight off. I totally understand what Maxine said. The last doc. I had has done the same thing and it upset me because i know that I'm not "normal" and I don't just need to loose some weight though that would be fabulous if it were true but its not. *sigh* So yeah, I've gained of weight over the past 6 yrs.

I can drive as well. Couple of things that help me:

1. Keep a cell phone charged and ready so you can call someone to get you if you end up not being able to drive home.

2. Have several people in your phonebook that you can call as well as your doctor's phone numbers.

3. Be smart! If you start feeling bad pull over into a parking lot or onto the side of the road- somewhere safe.

This is the reason I'm allowed to drive at all, my parents (I'm 18) won't let me unless I do this and my doc. agrees. On campus I also have UPD in my phone.

Hope this helps! Oh, and I also keep a couple bottles of water and a salty snack in my car but that's just me!

Heather

Tell her we hope she feels better soon!

Hey Guys, I can't seem to find a doc that specializes in dysaut. in Dallas, do any of you know of any? I have a regular cardiologist but since I'm 18 now and she's a pediatric cardiologist I'm going to be needing a new doctor and she's learning about dysaut. right along side my family and I right now so someone who already knows and is a specialist would be alot of help... any suggestions?

Thanks!

Heather

yeah, it seems alot of us get them and while sad it is comforting to know we're not alone. I personally just finished detoxing to get rid of rebound headaches but i get migranes to... took meds to get rid of them or at least cut the edge off (OTC meds don't work by the way) and am trying a preventative now that i'm seeing a headache specialist finally.

Hey, your son sounds like me. I'm going through much the same thing trying to get diagnosed and have been for quite awhile. Just let him know he's not alone in the teenage dysaut. world and if y'all want to chat feel free.

hey, my dad is epileptic and he has the same deal as you but the doctor wrote something about do not substitute on his Rx and the copay went down somewhat, call the insurance and doctor and see what can be worked out. i feel for you on the nausea, i hate it too.

Yeah, I crave salty stuff too. I salt everything and especially love tex-mex type foods because they have alot of salt in them but make sure to keep your aqua intake up.

HaHa I Love It! Know How You Feel Completly, I Think We Pretty Much Are All With You There. Lol.