P.O.T.S. - Passing Out?

[deeplyset]

My doctors think I may have POTS. I've been sick for about 2 years since a car accident where I hit my head (Concussion, chronic Migraines). I began to have werid symptoms but began suddenly collasping about 4 months after the accident. I lose complete control of my body (arms, legs, neck), my eyes roll, I am really weak and I can't speak for about 1 minute or so. When I come back my speech is slurred. I can take anywhere from 45 minutes to days to fully recover to my new "normal" which since that first collaspe is now I can't walk or remain upright for more then 10 minutes MAX without the collasping thing happening. I never lose complete consciousness but I'm loopy. They have done 2 tilt tables and they have to stop them at about 7-10 minutes because I collasped, hypervinate, and my heart goes nuts. I just found out that it could be POTS. (After 2 years of trying, 2 hospitalizations, and now I'm being seen by the Mayo Clinic). I don't know much about it. And some of the Doctors have written it off as a Conversion Disorder, or simply Psychological.

Do all POTS patients lose consicousness? Have any of you ever collasped like this? They have tested me over and over for seizures and that is not it.

Any help would be so helpful...

[morgan617]

I have never lost conciousness, but do have dysautonomia. There is a percentage of people that do lose it and many that don't. The symptoms are very variable. It is very common to get psych diagnoses, and so you will have to become somewhat thick skinned about it. I have , in the past been diagnosed with conversion disorder, panic attacks, severe anxiety, you name it. postural orthostatic tachycadic syndrome can take on many forms. Such as neuro cardio syncope or NCS, which is an aspect of this illness where people do faint, and some quite often. Nina , our moderator is an expert at finding websites to give you info, and there is also info here on the board. This is a frustrating illness with lots of questions and not enough answers, but hopefully you will find some here. Welcome to the site. You can look through the archives to find out many answers to the many questions you must have. Many people should come on board to greet you and hopefully we can help you. I tend not to dwell on specific names of illnesses here, so if I am incorrect, I apologize. I just deal with symptoms. morgan

[Ernie]

Hi,

Welcome to this nice family,

Not every POTS person faints.

I have the fainting and the collapsing. The fainting is relatively controlled with Proamatine and the collapsing is controlled with Carnitor. I have not collapse in 2 years now but I still faint every week.

I was diagnosded with Psychogenic syncope, Munchaussen and Conversion Disorder before I went to see Drs Grubb and Goldstein. The psychological diagnosis are given to us when doctors don't know what we have.

Ernie

[MightyMouse]

I also have a history of head trauma (car accident), spinal trauma (also in the accident) and dysautonomia. Not everyone passes out, but some do all the time. I do sometimes.

first, please consider checking out the links we have posted to help answer most common questions.

http://dinet.ipbhost.com/index.php?showtopic=1954

Second, you might want to look over my personal website that describes the surgeries that I've had to try to help with my neurolocial symptoms including weakness on the left side, spasms, migraines, loss of balance, swallowing problems, and pain radiating down my arms.

http://missmightymouse.com/

Nina

ps. welcome to the forum

[deeplyset]

Thank you all so much! This is encouraging! And helpful! - I return to the Mayo Clinic in June for a second evaluation. I will look over the website and the different discussions. I've already learned a lot by doing that... I'm hopeful that there is hope out there. I have never fainted (where I lose complete consiousness) but I collaspe ALL THE TIME two to three time or more a day. And it takes a long time to recover they have tried blood pressure medicine to raise my blood pressure but those haven't work. I wrote down the meds (carnitor and Proamatine - thanks).

It's been discouraging with the Conversion thing but I'm hopeful now that they might actually find something. I'm trying to get that THICK SKIN. They are still looking into Addision Diease also because I guess my endocrine stuff is all whack out. Anyone know about that??? I read it could mimic POTS, what are the differences? Can you have both?

Mightymouse - I have a lot of these symptoms "weakness on the left side, spasms, migraines, loss of balance, swallowing problems, and pain radiating down my arms." It will be insteresting to see your page. Thank you.

Does anyone know why it would be really HARD TO BREATH sometimes? My finger nails turn purple and my lips go numb. My CO2 levels are always low on my blood tests. NONE of my doctors have looked at it and they say that it just because I have anexity. I've never had anexity like this before all this started.

ANYWAY... I appreciate all of your help.

[steph37822]

oops