Jordan5815

in my diagnosis from the autonomic lab i was told I have "Mild Pan-Dysautonomia" aka mild version of pandysautonomia I don't know if I had the anti body test ACHR Antibodies and it came up negative I do not have it. Doc said it is probaly genetic. but no one else has it. only other medical condition I have is acid reflux which was taken care of with surgery and a mild heart murmur which happened from VSD after it closed up on it's own. I'm told I'm perfect from Cardiologists and GI Docs. I don't know if I have the acute, the pure, or the chronic progressive one. I have no idea how to find out. I keep trying to get access to my ans lab report so I can have another doc review it but they somehow lost the documents. Basically I don't know if it's progressing because I'm on meds. Somedays are better then others. Can't gain weight, I'm never hungry but I force myself to eat. I have problems holding onto water so I started taking salt tabs. But what is bothering me is the lack of resources on the internet for it. I am stuck and don't know what to do. I always assume the worst do people die from pandysautonomia? I mean I do not know what to expect or what to do about it. Don't got much money anymore because I went through it all. No Mayo clinic for me. I really don't even completely know what pandysautonomia is because all I read about is the ACHR antibody which I don't have. Would be nice to have it because then I could be treated and get better but don't know. One of those frustrating nights, getting ready to see my new neurologists in the next 2 weeks and don't even know if this doctor knows anything about autonomic issues Is there some magical site that I have not seen that you may have seen or some knowledge you have on the subject because I don't know what to expect anymore. Thanks, - John

They are called sodium chloride tablets, U.S.P. whatever that means it sais 1 gm it sais on the back sodium 394mg so there is something else in it to make it a full gram it's called this is what im taking i bought them at a kroger http://www.amazon.com/Sodium-Chloride-Tabl...s/dp/B000GCN130

I got those 1 gram salt tablets and let me tell you i started taking these like 4-5 days ago and ever since I have been eating like a pig non stop and am actually gaining weight was 124 now I'm 131 most likely liquid weight but still shows Im putting on weight. I'm also actually holding onto my water now too not going right through me so it's working out and after I sleep I feel "Refreshed" pretty cool stuff I still fall asleep after being up for 6 hours if I have nothing to do but still. I'm sleeping and feeling better instead of sleeping for 12 hours and staying awake for 7 im sleeping for 5 hours and staying away for about 7 I did notice my diastolic blood pressure has risen from 75-77 to 87 should be pretty normal because all the extra food I'm eating + salt tablets? Just letting everyone know I'm 6 ft tall so I'm still underweight definately don't need to lose weight need to gain! Anyways other question is someone answered a question in another thread telling me what pandysautonomia is but I've been searching around the web because apparently i have mild pandysautonomia but i don't know if i have the acute type of another kind not much info on it or how to check for the different types..... it sounds like pandysautonomia basically means generalized because it affects everything in the ans. If you can let me know if any of this stuff would be normal let me know I'm really trying to figure out why the salt has been helping me eat and stuff very strange! So get back to me about any of the stuff in here. - John

It is called mild-pan that is what is written on the diagnosis.

I'm back have not been on in a while I usually just read topics every now and then and or search for things that I need to know. When i went to the autonomic lab last year I was diagnosed with "Mild-pan Dysautonomia" I have no idea what the mild-pan thing is anyone know? The fast hr upon standing is not as bad as it was so that is promising to me I feel like I've improved over the past year haven't had those "panic attack" type symptoms either or if i do it's very mild. Thing is I don't have a low bp problem my blood pressure would rise when standing. I found out that my hands and feet are always cold and I have the pots type symptoms but if i ever go to the ER i noticed after they injected me with a fluid drip thing after the bag was all in me i think it's sailing solution or something but All my symptoms are gone including cold hands and feet and I'm energized and ready to go! So I just started taking salt tablets with my water so could be dehydration issues too. My worry currently is I'm going to have an airplane flight on a embraer rj145 = really small plane "Continental Express" on a 3 hour flight. I've never had a history of SVT's or PSVT's but I keep reading on this board that peeps are having them when flying so I would like to know what the chances of having them things are. I've also worn tons of holter monitors and never even had a pvt even tho I've had the symptoms of them so many times so it's kind of weird but oh well. Let me know - John

I had a nissen fundoplication surgery 5 years ago for GERD & a hernia repair had that checked up on a year ago and it's still good. Haven't looked into the other stuff.

Hey Everyone, It has been a while since I posted, valium stopped me from having those "attacks" I was having. Ended up seeing an ans specialist he does not want to see me anymore tho since I'm not a "minor" he confirmed i have Generalized dysautonomia not POTS even tho TTT sais I do but it is improving. I'm seeing a new doc now an ep, he said my dysautonomia might go away could be from a nerve and it takes times for it to grow back.... that could be my improvement but idk what to believe with that. Thing is, every morning when I wake up I am "sick" my stomach is empty and it wants me to eat, I eat a little i start getting sick and then i can't eat anymore and i stay sick for 4 hours after. Anyone had this problem and a solution? It's really annoying because I am severely underweight and keep trying to get back up to weight but for like 4 hours i cannot eat and it's not a blood sugar issue. Also when i see the EP again gonna discuss with him about getting off my meds, metoprolol and valium. My bp fluctuated throughout the day usually is high in the morning and then goes to normal/prehypertension. quitting the valium might be a problem I don't want those "attacks" to happen again :S - John

I smoked for 3-4 years and also lived in denver colorado for 1 year = mile above sea level, so I don't know about that info.

No i have not been tested of EDS what is the point and how do i get tested? This is an artery that pops out I have no hypermobile joints.

i wonder what kind of doctor im gonna be sent too lol

Hey everyone, sometimes when i lift something some huuuuuuuuuuge artery pops out of my armpit and from scale of 1- 10 it hurts at about a 10 i have to push the artery back into my armpit each time it can happen with both arms anyone know what's up? can it blow out and what happens if it blows out except for a world of hurt =p this is a really annoying thing and hurts like **** when it happens and when i say its big i mean big it gets HUGE so let me know whats up if anyone has an answer and if it's related to anything discussed on this forum because i gotta get to the bottom of ths never told a doctor about it because i thought it was normal but been asking people and no one has said they have had it happen to them. - John

It's no big deal, you just feel a little zap through a straight line in your body it's like a little shock of static electricty =p

So other people on here have been told they have "generalized dysautonomia"? I am just all to anxious to here my prognosis when i go into the doc in feb. Wish I could get it over with or he could tell me on the phone haha. I will be 19 when i finally get my prognosis maybe that will be my birthday present = my prognosis Man this thing has taken over 2 years away from me already been just sitting around waiting instead of living like I should. It's like a let down. I wish it would go back to where it was when i was 14 and not at the progression when i was 17 this thing kicking my butt

Would not change a thing, I would not be the same person without this entire experience or any of my past experiences so i would keep the same to keep myself 'mental' the same because I love myself and would not want myself as a different person. Everything life throws your way makes you who you are.

Just got the phone call from my doc Apparently I have a mild case of "Generalized Dysautonomia" I had a very good day when I went in so it makes me wonder if it's even more severe. I did ask if it's multiple systems atrophy or shydrager syndrome and the Doctor said no but I do not have an appointment until late February with my doctor. I have no idea what my prognosis is so now I'm all anxious haha, apparently my sweat test and nerve conduction said I had it easily but he also did mention i have had this thing for a long time probaly born with it. just hit me when i was 16 and progressed and hit me hard when i was 17 Anyone else heard they have generalized dysautonomia he said something like he has tons of patients with dysautonomias, he said 6 are identical to me man I just gotta hear what you all say. I now have it on paper that I have dysautonomia still did not want generalized.

They have done tons of tests on me even autonomic lab I have the kind where my blood pressure rises when i stand. My doc said chances are good that I may even make a full recovery even tho mine was gradual and not sudden onset.

What about dumping syndrome......... been tested for that? http://en.wikipedia.org/wiki/Gastric_dumping_syndrome Explains everything.... your low blood sugar the whole works...

These wouldn't be considered normal panic attacks anyways, I'm pretty calm the entire time they are going on. I've been to the ER several times one time blood sugar was high another blood sugar was low. One time low potassium etc. It all comes down to the HPA-Axis. and as said It's not a head problem/psychological, It's ans problem thats screwing with the HPA-Axis. And you should be fine to take toprol, Will it help with what is happening? no. It may help the pots tho.

Here is something I sent out to some of the ans docs, and endocrines, shrinks, several other people. BTW the gentleman who also came up with this theory come claim it if you want it I'm not the only one.

That is not an adrenaline surge it is a chemically induced panic attack caused by the hypothalamus sending acth to your adrenals. I have the same thing..... They most likely aren't even pvc's or pac's unless they have been caught by ekg....quick fix to the problem get Valium. xanax, klonopolin, etc none of those worked for me reason why: does not work within the hypothalamus like valium. acth makes the alpha and beta receptors in your heart super sensitive to adrenaline btw. It's an entire problem with the hypothalamus-pituitary-adrenal axis. Pituitary sends CRH to Hypothalamus which in return sends ACTH to Adrenals, which in return is supposed to release "Cortisol" big problem is it does not. So you get another chemical instead..... so it keeps repeating and repeating and repeating the entire process which somehow epinephrine gets involved somehow acth just absorbs it and you have a fun hour.

there you guys go, instead of using google there is a direct link to the song on youtube...... yeah maybe we should all just fly to outer space and be cured

I just take penicillin before going to the dentist because i have a heart murmur, but they usually just inject me with novacaine

It's all over the web just type lexapro withdrawal side effects it's the biggest list I've ever seen........ Then there are tons of forums talking about they had to go to the er and there heart stopped and all of this other stuff.

Yeah I know why i got a headache I'm hypertensive now. 160 over 95 been like this probally since i woke up

Ok, now i got bad headache started reading side effects and came across the withdrawal side effects, I don't like those they apparently last for 2 years and in rare cases result in cardiac arrest and other things. I think I am quitting the drug until i see the neuro since I have only been on it 2 days i should not have a problem.