Is This Dysautonomia?

[Royler]

Hi, all. New member here with some questions.

I've been feeling unwell for the past near-decade and have been struggling for answers. Recently, I stumbled across the concept of Dysautonomia, and it sounds very much like a possible cause of my problems.

In brief:

- Was in fine health until a bout of mono in 1997 - after that, I began experiencing the following symptoms:

1. Non-restorative sleep, prompting debilitating daytime fatigue. (I can get to and stay asleep fine, but the quality of sleep is horrible - studies show I rarely enter stage 3/4.)

2. *Extreme* sensitivity to previously tolerated allergens: dog dander, pollens, etc. An open window can leave me tossing and turning all night. I DO NOT cough or get stuffy, but my body feels "wired," almost like a caffeine fit. I can also respond in the same way to certain electronic devices(!), new paint, etc.

The best way I can describe it is, it's like my body is making a fist.

3. Frequent urination: not the sensation of having to go, but actually having to go a *lot,* frequently, even when I haven't had much to drink. Typically a response to allergens.

4. Recurring skin problems (eczema, psoriasis).

5. Low blood pressure - I tend to have panic attacks when I'm in open areas, feeling like I'm going to black out.

I have had several sleep studies, and all show signs of sleep disturbance/apnea, but CPAP does little to alleviate it. The problem grew so severe in 2002 that I left work and now try to earn an income from my home office. (Not easy.)

Does this sound like Dysautonomia? If it is, can anyone recommend a good doctor in Upstate NY to consult with? I have a SSDI hearing coming up shortly and would like a proverbial leg to stand on. Any help/advice would be appreciated. Thank you.

[persephone]

Since you make no mention whatsoever of tachycardia, inability to stand up, or palpitations, I'd be more inclined to say what you describe sounds like CFS, since you are effectively describing a chronically fatigued state. A tilt test might be useful though.

[briarrose]

Royler

Welcome to DINET

Sorry still half asleep and jet legged so forgive me if any of this doesn't make sense.

I'm sorry to hear about all of your troubles and for such a very long time too.

I'm not a doctor and not aloud to give medical advice on this site but I can tell you what I think (one of the administrator's should put that automatically on the bottom of each post

You didn't mention anything about your heartrate, do you have problems with that too? What kind of tests have you had done?

Have you checked into CFIDS?

http://www.cfids.org/about-cfids/symptoms.asp

You live in NY, for your symptoms I would recommend Dr. David Bell. I only know him by his reputation and have never been to him personally. From what I've read, Dr. Bell worked with Dr. Streeten and Dr. Streeten was the turning point for figuring out Dysautonomia. I believe Dr. Bell is in Lyndon, NY and he specializes in CFS but you fit his kind of patient Let me warn you he is expense and I found it personally difficult to come up with the kind of money that they wanted when I was thinking of seeing him.

Have you also checked this website under links for medical professionals? There might be more doctor's in your area too.

I might add to this later when I'm a little more awake

Have a Happy Thanksgiving!

[mom4cem]

HI,

Sorry I don't have much to add to what has been said. I did want you to know that you can check out Dr. Julian Stewarts website .... http://www.nymc.edu/fhp/centers/syncope/Ci...%20Syndrome.htm

E-mail and ask him if he could recommend somone. Dr. Stewart from what I recall works with adolescents.

I live in NY but closer to Manhattan and even here, the lack of understanding is bad.

[juliegee]

Hi Royler-

Welcome. As one member jokingly said, we should all qualify our comments with "I'm not a doctor, but..."

....I would guess that you have chronic fatigue syndrome. There is huge overlap with CFS and orthosatic intolerance (POTS, NMH.) My son has all of the symptoms you've described. He has CFS and NMH. A tilt table test would be a great place to start, conducted by an electropsysiologist who understands POTS and NMH. Let us know how old you are and what state you live in and we can better help you find a doc.

All the best-

Julie

[cardiactec]

dr. stewart is great. very personable, funny, and SMART. i saw him in august and was very pleased with the experience. just thought i'd let you know.

[Royler]

Thanks to everyone for their feedback.

I suspected Dysautonomia over CFS simply because it seems like my autonomic system has gone absolutely haywire following my bout with mono in 1997. I theorize the virus somehow damaged the ANS to the point where it overreacts to everything, prompting neurological arousals during sleep and odd symptoms during the daytime.

I'm 29 and live about 45 minutes from Syracuse, NY. I hesitate to have a tilt-table test because the sensation of passing out is freaky enough without someone actually forcing me into that state.

I don't normally have problems with my heart, though it can pound a bit when I lie down to go to sleep.

As for tests, etc, I've been to several allergists (who found nothing overly unusual, save for scratch-test reactions to airborne allergens); I've also had several sleep studies, since I believe my non-restorative rest is the worst offender of the lot.

As far as SSDI goes, I'm not even sure I know which would be the best course of action to take - that I have sleep-disordered breathing that doesn't respond to treatment, that I have CFS, or that I have Dysautonomia.

I will email Doctor Stewart to see if he can recommend anyone. Thanks again.

[briarrose]

The tilt table is going to be an important test for you, it will most likely be the determining factor on your diagnosis and treatment. Chronic fatigue does over lap Dysautonomia at least 1/3 of the time or more. A tilt table is probably going to be the difference of a CFS diagnosis and one of the different Dysautonomias. It's not pleasant to reproduce some of your worst symptoms but it is necessary and look at the bright side, you're in a controlled atmosphere When you're diagnosed properly they can attempt to treat you accurately.

I had fatigue so badly (slept 21 hours once) that I was ready to give up my kids to my ex, quit my job and have my mom put me in a nursing home but I saw Dr. Grubb and he saved my life. Based on my diagnosis of POTS, Orthostatic Hypotension and Chronic fatigue he was able to work out a plan of medications for me. It took a little time and trial of different medications but I'm doing so much better now. I'm not cured but my symptoms are usually manageable and if they aren't I usually know what to do for relief.

[persephone]

CFS often appears after a virus- in fact I think that is when it is most likely to appear, from what I've read. Hope you get the answers you're looking for.