it is weird that I found it today because I have spent the last 5 days home sick because of my fainting spells and general crappiness.
I have been diagnosed with vasovagal syncope since I was 12 and I fainted from my period. I did this almost every time until they put me on depo for a year. I am off it now, but I seem to have grown out of this problem. I faint whenever I get out of a hot shower/bath sometimes, whenever I am stressed beyond belief and when I don't get enough sleep. I have some other random triggers like when I don't get enough water and such... but those are the big ones.
sometimes when i have a real bad episode i have had a seizure like symptom where i shake and see colors. i have been told by doctors that this is due to lack of oxygen to my brain.
i have been through a million tests. heart tests, brain scans, tilt table etc etc...
it has been mostly under control until the other day and the last couple days i've been having black outs =/
and i was surfing the internet to see if its my thyroid issues... maybe? and i found this group
i can't sleep. i am exhausted. it is 5 am & i have not slept. yet i lay here wide awake.
Does anyone else have problems like this and know what to do?
I am completely clueless.
I've just joined this community. I have vasodepressor syncope, EDS and RSD. I got finally diagnosed last yeah by Prof Mathias, but my local drs are refusing me the tests and treatment he said I needed. Having had an episode last night and about to update my LJ (which is more of a MJ (MoanJournal) these days) and did a quick search of syncope and found you guys.
I will skip my VVS history for another post.... but what tricks to people have to boost their blood pressure on days they feel sluggish? I have tried elevating my feet and taking a Sudafed decongestant. And drinking at least half a diet Red Bull. I am still feeling completely drained.
I can't think of any other tricks from my cardiologist. I am also wondering what could have set off this episode. I worked out last night... hot bath?
Mostly I am looking for sympathy and understanding on how some days you wake up and know "I probably shouldn't be driving today, and getting anything done is going to be a struggle".
-Zoe, whoes heart stops in 7 minutes on a tilt table test
( read my e-mailCollapse )
Got your emails...thanks for making us aware of this! I'll do some reading up as this is a new one for me...
Hope you are hangin in there and love the myspace tune you have :-)
For those of you who don't know who Mike LeBaron is, he is a disk jockey for the great Chicagoland radio station US*99.5. I contacted the radio station and the individual DJs last night in the hopes that since they are always doing something great to help great causes, they could at least mention and help spread awareness about Dysautonomia. I am so ecstatic and excited about this! It very well may actually happen!!!!! It can change people's lives...I'm so hopeful ♥
I'm Amanda, and i have NCS, I was diagnosed with it little over a year ago. I've only had two episodes, but some very close calls. I know when to say i need to sit down and cool off. i've actually sat down in line at a store to avoid a spell. I'm currently taking Toporol.
Yeah so, i've been learning more and more about this condition ever since i was diagnosed. I knew about some of it because my mother has it, and one of my side effects is seizures, does anyone else have that problem? I've noticed that not many do, or at least to my knowledge.
Anyway, i just wanted to say hi!