enko

I don't stand alcohol either.. vertigo, headaches and often feel sleepy.. I usually say that I just don't tolerate alcohol, and hope that nobody will ask again

My lymph nodes in the neck are swelled too! I don't think it's just a coincidence.. But I also have problem convincing docs that I have temperature It's just soooo frustrating!

Anybody with MVP using magnesium? Thinking to start taking it, but I'm not sure will it do more bad things than good..

I agree with so many things written here.. I also catch myself staring at empty space, can't remember things or words, or do some things and don't remember doing them afterward. Can't memorize names, numbers and some usually simple info. That's why I ask people to write down data for me, not to just tell me because I'll forget it. I can't stand drinking coffee, and black/green tea don't help. I've managed to finish college but was totally tortured after.. 90% of my days are like that I'm floating in space and don't really understand what is happening around me. Sometimes I don't even remember how did I manage to get home..

I have the same thing! And to be honest, I feel like a poo too, big time. My neuro claims it has nothing to do with my neuro system (?!), and blood tests are always fine Doctors are looking at me like that I'm crazy

you're right, I think it was progesterone based pills, not estrogen. I think. Yeah, guess it was progesterone.

Sometimes I get headache and stomach pain before I get my period. But first 3-4 days are just awful.. On day 5 I feel better and don't bleed so much, but my period lasts for 8 or even more days so at the end I'm feeling really awful, drained and agitated cause it's giving me huge problems. Headaches, stomach pain, huge blood loss, weakness (I start to shake and sleep much more).. Not to mention that I feel really edgy and anxious and don't stand that anyone even touches me. Then again, there are some months when it's so confusing that I'm not even sure do I have it or not.. I know that it's supposed to come around that time (it's never 28 days, more 21) but it looks like a prolonged weak start and lasts for 10 or more days.. Sometimes my doc gives me estrogen pills, it levels it up a bit, but then everything goes back to abnormal "normal". Well, I'm never "bored" with it..

Do your doctors connect MVP with dysautonomia or treat it separatedly?

Praying too

yeah, I get foggy eyes a lot with big trouble focusing (my eye muscle tends to twitch).. and that black dots appear from time to time.. I had glaucoma on both of my eyes when I was kid, now only my left eye has problems with IOP that variates from time to time. Recently had my right eye operated to prevent retinal detachment. Also my eyes tend to hurt a lot and cause a headache.

I think that everybody with dysautonomia should have their eyes checked often, just to be on the safe side.

Brassmuse,

what do you mean under "It wreaks havoc on my NCS"?

thanks songcanary

hold in there lieze! I can't imagine how do you exactly feel, but I guess it's just horrible..

Song canary, what do you mean by fluid/salt loading? Do you literally drink salt water?

I'm also interested in this one What's your recipe for the salt water? I'm somehow not feeling so well even by thinking of drinking something salty..

Thank you all for replying

Libby,

I have similar problem. One cardiologist said she heard murmur, but second one said he heard nothing. The first one listened to my heart while I was laying down flat, second one while I was sitting. Maybe that has to do something..? But at least my ultrasound showed MVP, I'm "on the safe side" so they can't contradict that. Can't they?

Anybody have AV blocks by Weckenback/Mobitz? What is that? Recently one doctor refused to perform autonomic system testing on me because I have those (in my sleep)..

songcanary,

thank you for sharing

unfortunately I know exactly how do you feel..

My Holter results showed some odd things, but my cardio isn't worried about it, he thinks it's (just potentially!) a mild neuro problem. He sent me back to neuro who said it's a heart problem. Ha ha ha.. thank you guys, my life really isn't boring with you..

How not to be depressed with that "ping-pong-ball" feeling?

That was maybe a presyncope episode. I get those when it's hot or I'm in a room with lots of people - feeling hot, dizzy, nauseous, sweating, can't breath, having vertigo and tingles in my neck and back of head, starting to feel numb, everything starts to fade out and I feel like that my legs will "chop off". Afterward I'm all in pain, have a headache, shake and feel thirsty. Heat and low BP don't go well together. Since you have POTS that doesn't make things any better. Always be sure that you're well hydrated. Next time you get an episode sit down (on the ground) somewhere in shades (important since you need to cool down) and put your head between legs or lay down flat (so that your heart can pump up easier) and drink at least 200 ml of water. That will stabilize your BP and heart. WAIT for some time until you feel better (15-30 mins, depends on you). Don't get up too fast or you'll feel even more worse. I've found that for me it's wise to avoid direct sunlight because I almost instantly get tingles in my neck and start feeling dizzy and nauseous, specially if I need to stand for few minutes.

wow, links are great! Thanks!

I'm diagnosed with mitral valve prolapse. Holter ECG also showed some weird things (sinus arrhythmia, nodal rhythm..).. What are your experiences and/or problems?

wow, there were few of us discussing on other topic (about allergies) about smell of cigarettes and how much it bothers us. I'm also very sensible of smells (if something is roasted or has some other strong flavor it's a killer for me). I also have the problems you have, smelling things what other people don't, but I'm not diagnosed with dysautonomia, just MVP for now..

A really big "Ick!" here too

songcanary,

did docs confirm that you're allergic on cigarettes or it's "just" that you can't stand it?

I'm generally quite sensible on smells, I sometimes get nausea and dizziness.. not to mention what they do to my appetite.. "What's for lunch? Let me smell.. What..roasted ribs? Oh I'm not feeling so well.. " Now I'm too much off topic, sorry

unfortunately my mom and sys are smokers so I can't get away as much I would wish