enko

Oh and, songcanary don't mind me asking.. did you manage to get some weight and muscles back? If yes, what did help?

Ooooh, I just love the "You are just stressed out" explanation.. I should keep some kind of record

Thank you all, I'm feeling much better because someone is understanding me Hugs for everyone

mwise,

thank you for that precious info! Wow.. there's a lot of things Who knows what they are going to do to me.. Well they're at least going to do something.. I just want to know what to do to stop all of that awful things happening to me

songcanary,

I already changed PCP once, and they're both not listening.. argh.. The worst thing now is that both of my parents and me are under same doctor, he tells them everything..

P.S. I like your nick Well, I like birds, and I've got a little budgie from a friend few days ago. He's such a cutie Sorry for off-topic

Ouch.. I'm sorry to hear that about your daughter

The advice my neurologist gave me was "Sit down and let it pass and avoid that kind of places". Well that surely won't help cause I still need to use public transportation (and many people in a small room triggers me). Life is horrible for me right now At least you understand what I'm talking about..

k'smom,

Thank you a lot for taking the time to write that down! It means a lot to me!

You're right, they probably don't know. Just yesterday I was reading about dysautonomia in my native language (I'm from Croatia) and I could find just barely some data. Syncope and presyncope is something that needs not to be treated. Some people with dysautonomia were given meds for depression. IMHO, depression is a side effect of dysautonomia and not a cause and the problem won't be solved...

I just go back to reading... there's a lot of data on this forum.. Thank you all who posted

Did the Dr. say they want to do a Tilt Table Test? Google it --it's not a bad test at all and can give lots of useful information.

No, didn't even mention it.

Hi and welcome! Have you checked out the DINET Web site? There is a ton of info there on the various types of dysautonomias and a lot of info on what testing they do at various centers. There is also a list of docs that people on the site have used and found to be helpful.

It's a lot of info to process, but there is a wealth of info there. Please check it out. I know I printed out a lot of the info and took it with me to my doctor when I found this site and wanted him to pay attention to what I was saying. Luckily I have a PCP who's willing to listen and took my articles to read.

Good luck!

Thank you!

You're lucky that your doc listened.. Mines just wave with hand no matter what I say.. I'm reading that data at least for myself...

Hello all!

I'm not diagnosed with dysautonomia, just with mitral valve prolapse, and I've found this site while poking around to find something more about MVP which connected me with dysautonomia. Well, here goes my lamentation..

Few years back I had presyncope few times (first feeling dizzy, spinning, having trouble breathing and collapsed loosing sight and posture but I still could hear). To be honest I've ignored it for some time and once told it to my doc. He said "You have low BP, drink more water and eat salty.". OK, I always have a bottle of water with me and take sips. But after that I again felt that dizzy feeling and spinning around, mostly in warm rooms, open sun and where's a lot of people. I have managed to avoid further damage by sitting down. And again I ignored that episodes.

Three years back I had my appendix removed. I've woke up one morning with awful pain and was taken to surgery in short notice. After that I had slightly elevated temperature for eight months (it was reeeeaaaally annoying) and again my doc just waved his hand off after blood tests "I don't know what's the problem. Probably a small infection." It didn't "help" that I've told him that I'm also feeling often headaches and chest pain. Probably wasn't worried because the pain was on the right chest side

For years I have had that headaches and they are getting worse. Sometimes I just can't get out of bed because the pain and often no painkillers help and sometimes it lasts for days

Since I'm also having problems with my eyes I'm quite often with my ophthalmologist. Once I complained on often headaches and she asked for a neurological checkup. Well, the neurologist asked how often I have headaches, what kind of pain and other than saying that I'm underweight and that I have stronger reflexes on my legs asked for a regular blood, thyroid and EKG checkup. The tests returned fine and she was wiling to leave all behind with "Contact me when you'll have that headaches again." I've asked what to do with that collapsing sensations I have (because I've stated it in first interview) so she said that maybe I can go on testing of autonomic nervous system. First I had to go to cardiologist. I've had ultrasound checkup on heart that showed that MVP (without regurgitation). Holter showed some sinus arrhythmia, few AV blocks and nodal rhythm. Cardiologist asked did I have episodes of fainting and palpitations. I've stated my case (first palpitations I had a long time and they occasionally come back, together with pain in left chest side). He cleared me as healthy. I've asked for a second opinion and had the same answer. I guess I'm too young to be sick (27 y.)

Now my only hope to find out what is wrong is that autonomic nervous system test. I don't even know what it means and what they are going to do to me And will my doc even read the results in manner that she really cares. I'm extremely tired and trying not to slip deeper into depression but it's really hard I'm having memory problems and feeling confused all the time, I'm constantly tired and sleepy (I literally drag my feet) and can't wait to have a nap (I sleep 10 or so hours daily and it's progressing and I'm waking at night more and more often). That temperature and right chest pain are kicking in every now and then. Also I'm loosing weight and muscle tone (and I unfortunately don't stand exercise because my heart goes wild and I can't catch a breath). That headaches are awful and I get to be hypersensitive on smells and light and I'm really, reaaaally afraid what will that heat do to me next summer And doctors tell me that everything is just fine with me :( Am I crazy? They are making me feel like a hypochondriac and I don't want to talk about my problems with anyone any more I just want to cry now Does any of you have any advices what to do at least with that headaches? They are really killing me..

Did someone of you have that test? Can you pleaseee tell me something about it?