New to forum

[shell0726]

Hello everyone,
      Two  and a  half years ago I became very ill after what I assume was a stomach infection.  Possibly camylobacter from under cooked poultry.  I was sick and could not eat for about a month and then I started having problems with my nervous system.  I would be constipated (gastroparesis) and then the next thing you know diahrrea  My blood pressure would go up then down.  I had problems controlling the temperature of my body- I would start shivering and then if I did fall asleep I would wake up drenched with sweat.   I had a hard time sleeping anyways.  I had severe abdominal pains.  My emotions were up and down.  I spent 10 days in Mass General hospital while they tried to figure out what was wrong with me.  They did every test imaginable on me.  They sent a pain specialist in and she said I think there may be something wrong with her parasympathetic nervous system.  They put me on Gabapentin and Cymbalta.  Over the next couple of months I healed and was able to eat without pain.
     Fastforward to today.  I weaned off  Cymbalta in June and was down to a low dose of Gabapentin.  The nerve pain started in my teeth after dental work two months ago.  I was put on two different antibiotics and 2 Medrol  (prednisolone) dose packs for teeth.  Three weeks ago I had the H1N1 shot because of asthma.  I am starting to have similiar symptoms as   2 and half years ago.  The reason I went off of the Cymbalta (6 months ago) was because of an increase in blood pressure and borderline diabetic blood sugar.   (and weight gain)  I am curious of similiar stories of dysautonomia being started from autoimmune problems.  I am also curious of medications SSRI's, or tricyclic antidepressants helping dysautonomia symptoms.  In my case it did seem to mellow out my nervous system.  (The Cymbalta which is an SSNRI).  I am seeing a neurologist Friday.  Thank you for listening and any info you might have.  Shelley

[karinosa]

nope - I've only been diagnosed with POTS, and I had 'everything' tested, my brother has lupus but I tested negative for that.  Good luck with seeing the Neurologist on Friday, hopefully they will be able to tell you more.

[shell0726]

Do you have any other autoimmune disorders?

[karinosa]

Mine started after a virus, two head colds back to back over a year ago, I think I had some of the symptoms prior to this but it came full blown after the virus.

[shell0726]

(When you feel better)
Is it the peripheral neuropathy causing you pain?  Do you have nerve damage?  I have nerve pain from two yearsago..   I had surgery twenty years


ago and now have an illeoanal pouch for the colitis.  I have no large intestine.  The pouch is on the inside.  The spondylitis is bearable.  It is spine arthritis.Both diseases are autoimmune.  I was just wondering if anyone's problems  with their nervous system started out with the flu/sickness/virus. (and then the problems started).  P.S. I have two border terriers.  Shelley

[evo123]

Sorry, I posted the above before I had finished!!!

Below is a link to medications used in dysautonomia:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196

Our 2 community leaders are under the weather right now.  They will be able to give accurate info on the meds you are interested in.  Give them time and they will respond to your queries.

[evo123]

I am sorry to hear what you are going through.  All of us here understand and are all experiencing illness.

I have had symptoms now for several years but this year they hit in full force to the extent were I was unable to be upright for more than a few minutes.  I had a Hep B vaccine that I believe may have triggered a worse onset of symptoms.  I am awaiting a referral to a POTS specialist for more investigation.

The link below takes you to this forums health pages:

http://www.medhelp.org/health_pages/list?cid=196

[AireScottie]

I've had increasingly bad dysautonomia for about a decade, and just found out about 6 months ago that it's because I have peripheral neuropathy from Sjogren's (also autoimmune).  Personally, I couldn't take Cymbalta or any antidepressants because they drop my BP like a rock, but I know it helps some people.  I'm taking Plaquenil for the Sjogren's, the idea being to get my immune system to stop attacking my nervous system, so that maybe the nerves will start growing back eventually.

Peripheral neuropathy is VERY common with autoimmune diseases, though often not diagnosed or misdiagnosed as fibromyalgia.  If you want some reading on Peripheral Neuropathy, this MedHelp page is decent.  There's also quite a bit of info on the web, although most pages gloss over all the autonomic problems.
http://www.medhelp.org/medical-information/show/74

Right now, I'm waiting for a Lyrica rx to be approved by insurance and am in excruciating pain.  I'm not very familiar with treatment for colitis or ankylosing spondylitis, but I will read up on them when I'm feeling a little better so we can converse a little better.  I'll get back to you when I don't feel like death warmed over.

[acesew]

First off Welcome.  Secondly, sorry no one responded right away.  Many of us have been under the weather and with the stress of the holidays it is hard on us.  Or at least on me.  I have not been formally diagnosed with dysautonomia yet, but am being treated as if I have POTS.  I was put on Cymbalta, but could not tolerate it.  I am on Lexapro 20 mg.  I don't seem to have a lot of mood swings anyway, so I can't tell that the lexapro has helped that.  I can tell the lexapro helps a little with sleep.  Not a whole lot.  I have a very hard time sleeping.  I am not sure what would have triggered my dyso.  I have had mono, flu, knee surgeries, and came from a very abusive family (there are so many things that could have caused it).  The really severe problems started about 7-8 years ago.  I have always had problems with my stomach, bladder, and sleeping (this seems to lean toward the abuse as triggers???).  So I can't be much help as far as the autoimmune part goes.  As soon as some of the others are able to, I am sure they may be able to help more than I have.
Thanks