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

John,

Can you tell me specifically which salt tablets you're taking? The ones that my son tried are Thermotabs - each one is 180 mg. of sodium. Are you taking tablets that each have 1 gram?? If so, do they bother your stomach at all? Are they the slow-release kind? If yes, where did you get them?

Thanks!

Lenna

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

Hello John--never heard the term "mild-pan"--I am trying to think of something that sounds similar, perhaps you mis-heard?

If you are concerned about flight and heart issues, the best thing would be to talk to your dr. People with POTS have problems with flight due to the change in pressure, altitude (affects oxygen level in the air) and the dryness of the air that tends to aggravate an already difficult struggle to stay hydrated.

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.

Hello,

This was sent to you because I believe you could do something with this information I am sending you. I am no doctor, but believe I put together an important piece of information that has been missing in treatment and possibly finding a cure for Hyperadrenergic POTS

I was diagnosed with a Subform of Dysautonomia called postural orthostatic tachycardia syndrome via Tilt Table Test.

The acronym is POTS. There are many forms of POTS

For those who do not know what Dysautonomia is there is a book that is readable online located at http://www.ndrf.org/NDRFHandbook.htm

Hyperadrenergic (hyperadrenic) POTS is the form I'm going to go into.

The Hyperadrenergic form of POTS is the one I believe I have.

Dysautonomia is a malfunction of the autonomic nervous system. Your autonomic nervous system controls "ALL" body functions that you do not control yourself. Examples, are (Heart Rate, Blood Pressure, Breathing, Digestion etc.)

I ran across someone on the internet via www.dinet.ipbhost.com

That site is a message board where Dysautonomia patients all around the world trade information with one another.

This man has the same exact symptoms I have no difference what so ever.

We both lost a tremendous amount of weight in a 2 month period unexplained. Example: 40-60lb's prior to POTS. He has GERD, I as well had GERD but got that taken care of with the Nissen Fundoplication surgery.

The weight loss happened when I was of 14 yr's of age and I still have not gained it back I am 127 lb's 5ft 11in. I work very hard at even maintaining my weight. My weight still drops just for your information.

We both have high blood pressure and heart rate shoot up upon standing.

bpm: at the least a increase of 30bpm

bp: usually a systolic rise of 30 and diastolic rise of 10-20

Very bad days heart rate when standing can go to 180bpm and blood pressure 240 over 140

We have the same episodes which sound like an "emotional panic attack". It happens slightly different in both of us but ends with the same result. My attacks start with me becoming extremely nauseous for about 15 minutes hands get clammy then my heart takes off racing sometimes in the 200's range and blood pressure skyrockets. Then my arms and legs get pain shooting through them. Then they go "Completely Numb" kind of like injecting them with Novacaine. Then I start shaking uncontrollably like a seizure except it is not.

The hearts beats are very strong beats as well and it always feels like it skips and throws in extra beats as it is going on. When the funny things with the heart happen it just knocks the wind out of me, quite possibly paralyzing my diaphragm from the strong aortic pulse since I am so skinny.

Difference in Age I am 18 the other man is 32.

Somethings to be noted.

1. We both have always had bulgy veins when these "panic" episodes happen they constrict prior to them.

2. We both have dilated pupils constantly, mine was first noticed at the age of 6 years.

3. The POTS was not a sudden onset in either of us it happened gradually.

4. POTS symptoms usually go away towards the end of the day but the "panic" episodes usually kick in towards the end of the day.

What I'm going to go into may sound insane but here it goes.

The 32 yr. old man from phoenix, Arizona has had all of his tests done and all add up to the information I am supplying below.

Note: I have not yet had the opportunity to have my blood work taken, but I believe mine is going to have the same result, since the symptoms and onset of this "syndrome" were identical, besides the age. It just happened to hit me faster then him.

I believe If you were to check my Cortisol in the morning it would be in the normal range. Whereas at night time it would be way too low.

What I want to explain is my episodes usually occur after I have been up for a while but my Pots symptoms almost disappear. What I would like to suggest is there is a neuro-endocrine disruption, it may be infact adrenal insuffiency.

My point is something is going wrong with the communication with the Pituitary and the Adrenals, it could also be between the Hypothalamus and the Pituitary. It could even be but (not likely) the Central Nervous System and the Adrenals.

The major problem with fixing this is "Most" Doctors are not schooled to recognize "Adrenal Fatigue". Most Doctors only believe in Addisons Disease. "Hyperadrenic" in my opinion would mean the adrenals are overactive or that my vascular system is over responsive meaning it has too many receptors. But the cardiologists can't see the beta receptors. I am on metoprolol and it has not done a thing for me. So I think the receptors in the heart are kind of ruled out. But think as the beta receptors as hair in your nose that make you sneeze, here is the kicker beta receptors can be sensitized and desensitized in a matter of minutes to hours or days.

What this suggests is that some antagonist is circulating in my plasma. I believe this to be Adrenocorticotropic (ACTH), ACTH stimulates the adrenals. Why so much ACTH? because the adrenals are not pumping out enough Cortisol they are shot and worn out. So the Hypothalamus sends out more Corticotropin (CRH) to the pituitary which in return the pituitary sends out way too much ACTH. so the adrenals just keep getting hammered. Because they can't make enough Cortisol

they get hammered more. The only thing that they are able to produce is Dehydroepiandrosterone (DHEA). So ALOT of DHEA sulfate winds up circulating in the plasma. by alot I mean alot probaly about 4,000% higher then normal. The Adrenals make the Hormones that help you hold on to water. A Good example is the hormone named (Aldosterone). So you see, I can be Hypovolemic because the adrenals are shot. that's just on top of all of this. Now here's another Double Whammy, beta receptors in the heart grow out of control due to the elevated ACTH so now I'm supersensitive to adrenaline and alpha receptors.

Here is my theory on how those "chemical induced panic attacks happen" at night time usually after I eat. Cortisol stimulates the breakdown of proteins and fats, and provides for the conversion of some amino acids into glucose as needed (gluconeogenesis). If the diet is deficient in protein, or if digestion of protein is inadequate, extra cortisol must be produced to break down muscle tissue for needed amino acids.

So if I need cortisol to break down protein and fat, and I don't have it, I will get more ACTH, Epinephrine, Norepinephrine, DHEA, etc. Which in return activates the sympathetic nervous system "fight or flight response" causing a panic attack on the spot.

I believe this theory will hold hot water for I. if I have the following blood tests done same draw morning and night. Which I will shortly have done.

ACTH

DHEA

Testosterone

Cortisol

Aldosterone

The man In Arizona's ACTH was very high, his DHEA was about 4,000% over normal about, his testosterone was lower then normal and his cortisol when waking was 20 and at night was between 1-0

There are most likely more hormone tests that should be done but I am no doctor just been doing a lot of research with a man from Phoenix, Arizona. I think this is a major piece of the puzzle to curing Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.

Things I am currently looking for answers to:

1. "Narcotic" pain killers like morphine sulfate, all seem to get rid of the POTS symptoms example extreme blood pressure and pulse rate changes upon standing. (Does Make Me Extremely Loopy Tho".

Answer Found: Morphine Sulfate is a HUUUUUGE reuptake Inhibitor of 5-hydroxytryptamine (5-Ht) and 5-hydroxyindoleacetic acid (5-HIAA) levels aka serotonin. And I tried an ssri did not do anything but drastically raise my blood pressure.

2. diazepam seems to have a different affect on me, my eyes constrict properly. I actually have energy. My Brain fog is gone. I also don't have those nightly "chemically induced panic attacks"

Answer Found: Diazepam works within the Hypothalamus whereas other benzos do not.

There is a legitimate argument that could be supplied. This argument could suggest it is not adrenal fatigue but a problem with the Hypothalamus-Pituitary-Adrenal-Axis (HPA Axis). This could be caused by a number of things including autonomic neuropathy. Reason why this argument could also hold hot water is ACTH is very elevated with Cortisol. So this would be a normal response to stress. The reason I'm not trying to back this argument is because it would lead to a panic disorder that would be close to impossible to escape until the problem is fixed.

This theory is strictly going into what is going on with the adrenals, I do believe there is an Autonomic Neuropathy in all hyperadrenergic POTS Patients.

I figure a Doctor who takes interest In Dysautonomia, Could probaly do something with the information I have provided.

My name: John Jordan

Address: P.O. Box 35667 Houston, Texas 77235

Telephone Number: 713-410-8958

Email: easymarketer @ gmail. com

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.

Hi, welcome to the board :-).

when i went to the dentist a few month ago, he wanted to take a wisdom tooth out straight away. I was concerned becaue of the same reasons you are. So i asked im about the different shots he can offer me to numb my mouth. He explained to me that there is one with adrenalin in it and one without. The dentist said that the one without adrenalin won't last as long as the other one but still long enough. Because i know, that iam very sensitive to adrenalin i chose the other one. I was a little nervous about it because i didnt know how my body would react to it. But i was very suprised that i had no problems at all.

When he told me that he still has to do some work on my root canal a few weeks later i new i would take the same shot again. But on that day i didnt feel very well in the first place, i still went to the dentist and convinced myself that i should just try and get it over with. I got the same shot again and i handled it very well, like the time before. It was just me who decided that i didnt want the root canal done due to other POTS Symtoms i had all day. So i went home without the root canal being done. Just with a numb mouth :-). I know i have to go back there soon and i know for sure wich shot i will have.

Wish you all the best.

carinara

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.