Newly Diagnosed With Dysuatonomia

[JodieArizona]

Hi Everyone,

I have been very ill since February 1, 2006 and have finally found out last week that I have Dysautonomia after a bout with Mono. My doctor said "You have Dysautonomia...there is nothing that you can do about it...I'll see you in three months". I have left a message today at her office for her to call me back, since I have read online that there are different types of Dysautonomia and I would like to find out which one I have. I have read that a viral illness such a Mono can trigger Dysautonomia. I do not have a drop in blood pressure when I stand. I just have severe fatigue, nausea, dizziness, adrenaline to high, throid up and down and blood pressue too high sometimes 150/100.

If anyone has any info that they think would help....please let me know.

Thank you~

Jodie

[taylortotmom]

There is some good info on the DINET main page. Many of us do well with alarge increase in fluids and salt and different med combinations. Hope you can find a doctor willing to work with you- this stuff stinks.

Carmen

[kholdefer]

Hi. I'm sorry you have been diagnosed with this. You have come to the right place. I was also diagnosed with POTS after a mono infection. There is stuff you can do, contrary to what your doctor says. You can sleep with the head of your bed elevated, increase your fluids, get up very slowly, and try to do very light exercise. I swim, when I can or do some pilates when I can. I don't know if this is what will help you; you should look at this website, they have very good suggestions. You should probably find a doctor who offers you more help. I know it is hard; I'm in a similar situation myself. I tend to take what the doctor says as final, because they seem like such an authority figure. Its important to recognize that not much is known about POTS, so its important to find a doctor who does know about it. I am going through this doctor search myself. Remember that you are the number one authority figure when it comes to your body and how you feel.

I hope this forum helps you; it has helped me.

Kady

[bttrflyamby1981]

Hi Jodie,

Does this mean you live in Arizona? LOL If so what part? I know a great doctor who is good at "listening" to his patients if your interested. He's still trying to diagnose me.

Anyway, your doctor sounds like he/she is blowing you off. I would look for another doc.

Welcome and best wishes,

Amber

[Guest dionna]

welcome to the forum.

to give you some hope, i know someone that had mono and he got POTS/ CFS following it and his only lasted about 2 years and then he was back to normal. perhaps the same will go for you as well. i certainly hope so! and the others are right, there are some things that you can do to make you feel better and things to avoid. like they said the DINET main page is a great place to find out some of the things.

dionna

[MomtoGiuliana]

You do not have to suffer. There are MANY treatments available, depending on your symptoms and diagnosis. Hope you can find a specialist who will help you find a treatment regime that gets you on the road to a good recovery.

Katherine

[AJVDK]

Hello,

I just wanted to say welcome. Here is a few place to find more information regarding Dysautonia.

http://dinet.org/what_helps.htm

http://dinet.org/physicians.htm

http://dinet.org/what_to_avoid.htm

How this help alittle!