Welcome To The Dysautonomia Community!

[halbashes]

Updated Welcome To The Dysautonomia Community!

Welcome to the Dysautonomia Community!  Dysautonomia, or Autonomic Dysfunction is a chronic illness that causes frequent malfunctions within the Autonomic Nervous System.  Two of the most commonly occurring forms of Dysautonomia are Postural Orthostatic Tachycardia Syndrome (POTS), and Neurally Mediated Hypotention (NMH).

The many varying symptoms of Autonomic Dysfunction can make Dysautonomia very difficult to diagnose, treat, and ultimately to live with.  This community is a wonderful place to exchange information with others sharing similar conditions.

A link to our "health pages" can be found at the top right of this page.  In the health pages area, members are encouraged to read, and/or add information pertaining to diagnosis, management, and research of Dysautonomia and the Autonomic Nervous System.

Autonomic Dysfunction & Dysautonomia Index Page:
http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196

Additionally, I'd like to point out some of the awesome health trackers that MedHelp has made available to its members.  You can access these trackers by clicking the "My MedHelp" link above, and then the "Trackers" link.  

We'd recommend using the Dysautonomia Tracker http://www.medhelp.org/land/dysautonomia-tracker , along with the Blood Pressure Tracker.  Though there are many other trackers available as well, and more being created all of the time!

Please feel free to introduce yourself, ask questions, or share information with the community.  We look forward to meeting you very soon!

HalBashes
Community Leader

and

Heiferly
Community Leader

[psychologystudent800]

Hello halbashes,

I have been going through the forum and I want to thank you for all the work and time you are putting into this.

I know how hard it is sometimes for people with this condition and your help and advice will make a difference for all those suffering.

Also I think we do not thank people enough for their effort..

Keep up the good work.

[PlateletGal]

Hi ! I have CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) and have had POTS along with it. I've been on a treatment that targets pathogens and my blood pressure has started to stabilize and so the POTS is so much better ! I still have some problems at times though and post here to see if I can help anyone with this frustrating condition.

[shelly0721]

I was just diagnosed with autonomic dysfunction yesterday after my old ep could not do eps due to insurance does not cover the hospital that he does it. I was glad that I didn't do the eps. I have IST due to complications of  gastroparesis and side effects of meds that required to control gastroparesis. I also have low blood pressure. My new ep said my system is confuse on how to regulate my heart rate at times and blood pressure. I need to have another event monitor for 30 days. Also he is going to find what meds that+I+can+tolerate+and+won't+cause+gastroparesis+to+flare+up.+He+needs+to+control+heart+rate+and+increase+blood+pressure.+It+will+be+trial+and+error+to+see+if+which+one+I+can+take.+Its+not+so+easy+to+take+meds.+If+I+can't+tolerate+any+meds+then+I+will+consider+picc+again+or+maybe+manage+some+other+way.+This+gastroparesis+started+from+a+virus+and+escolated+to+severe+case+and+permenant+damage,+now+to+autonomic+dysfunction+of+IST.+I+don't+if+this+is+consider+part+of+autonomic+group+but+just+checking.

[GoodnessGoddess]

thank you so much for this forum.  it is such a relief.  i don't feel so alone anymore.  thank you.

[qfish]

My daughter was diagnosed with vasovagal syncope back in May.  She has been to many different doctors including neurologists, cardiologists, and various family doctors.  She had all the tests from MRI, EEG, EKG, Tilt table, pulmonary, blood testing, and epilepsy monitoring.  She has been on many different medicines.  In November she had only one day that she was episode free.  During the week of Thanksgiving she had 3 or 4 episodes each day.  

She went to a chiropractor last week.  He found that C1 and C2 vertebrae were out of alignment.  He used a machine to put the vertebrae back in poisiton.  She returned in 2 days for a duplicate treatment.  She has been episode free for 6 days and feels great.  The other doctors had said that it was incurable.

I highly recommend having a chiropractor take an x-ray to determine if the C1 or C2 vertebrae are out of alignment.

i hope other find similar success

please e-mail me at jeff.***@**** if you need additional details.

[Barb64]

It is so difficult when one can't be dx and so helpful to find a group that I might some what fit into.  We surely don't come in droves so it's hard to find someone to share with that won't think you are totally crazy.

Like everyone else my problems are multiple - Hoshimoto's, roscea, Raynaud's, polyneuropathy, small fiber neuropathy, lack of sweating ability so intolerance to heat,
foot drop, syncope, GI problems and pain somewhat improved on a gluten free diet, heart conditions - multiple, allergic reactions to many drugs, fibromyalgia, white matter lesions in the brain, muscle pain and spasticity, movement disorder - probably dystonia - most all of these things have been on the increase this past year.  I tire more quickly.  I have seen the inside of a hospital as an inpatient 7 out of the last 15 months.

I've been to Boston where they diagnosed small fiber neuropathy due to the sweat test thus also giving autonomic dysfunction as a dx.  I'm headed for Columbia Presbyterian next month hoping for things to come together for me to actually get some help to deal with all that comes at me.

In spite of all the above, I do have joy, the deep down kind.  There are days that I struggle when something new strikes me but I  have a faith that has grown with all of this. God has been teaching me about Himself and has done some miraculous things for me - the inner kind that really counts.

It so encouraging and one way in our limited capacities we can be useful to be able to have such a group  as this.   Thanks.

[xdawnx]

Hey, Thanks for your note!
Ive been feeling soo many of the symptoms you all feel with your dysautonomia and i was wondering what tests you had done for your diagnosis? Ive been feeling terrible for so long i really feel this is worth being tested for!
Thanks xx

[Monnette]

Thanks for your note.  It does sound more and more like I may have an autonomic nervous system disorder.  I recently had the autonomic nervous system test and the sweat test was awful for me.  I felt like they were burning me with a cigerette butt or lighter.  She told me it should not burn that bad ...but it did.  I sucked it up and did it but it was soooo..uncomfortable.  I also did not do well in the tilt table test and after five minutes started to black out, vomit and almost lost control of my bowels and bladder.  I begged them to stop as I cannot stand to black out.  I get so afraid I will not wake up.  I have multiple dx of Fibromyalgia, HBP, orthostatic hypotention, Hashimotos, Hypothyroid, adrenal insufficiency, spot on my pituitary gland, neuropathy in legs, hands and feet.  I see my urologist today for a bladder exam..he suspects Interstitial cystitis and possibly nervous system disorder.  I sometimes feel like I will have a heart attack,stroke, stop breathing, choke on something...etc. etc.  I am trying hard to not let this freak me out.  I stay very busy..I have a large goat herd..I am also an artist and I take care of my home but somedays it is rough as my family is not very empathetic, only my husband knows what I am going through and I think he tires of it a lot.  I feel very alone in this battle...people think I look just fine but do not realize I am in pain all the time.  I don't take pain meds but I think I will have to now! I get so wear in this battle and it has been like this for twenty months now. I was dx with Fibromyalgia in 2000 and have continued to pile up the diagnosis..been through dozens and dozens of doctors, some understand...some just want to throw anitdepressants at you.  It is so horrible to be looked at as some kind of nut.  I sometimes wonder if I will live to be 55?

[Groggyfroggy]

I'm so happy I finally found this site.  I've been looking for it for a LONG TIME.  I have multiple health issues, among them autonomic dysfunction (caused by diabetes) and have also been diagnosed with Postural Tacchycardia Syndrome.  The last few weeks have been so very hard with syncopal episodes almost every day and sometimes several a day.  I'm so glad to have found other people who understand what I'm going thru'  AND I'm so glad for the medical articles available. (Wish my Neurologist would have read one of them in particular....I'm going to show it to my PCP who is very openminded)

Thanks Again,
Groggyfroggy

[Angel007]

It is interesting to find out about C1-C2 spine affecting dysautonomia.
I have scoliosis of the spine - and my C spine are in straight alignment (no natural curve). I always feel better after chiro visits. I had to move interstate a couple of times - and haven't found a good chiro in my town, so haven't been back for a long time. I've been getting more flair ups now - so need to find a chiro.

Interestingly...ALL diabetics have C1 and C2 spine out of alignment. More research definately needs to be done on this.
I work in cancer and renal research - and many "conventional" doctors are very unwilling to look into these things thinking of them as "alternate" treatments - even accusing them of being phoney! I wish there could be more of a collaboration between conventional and complementary. Getting research projects up and going in these areas is unfortunately neigh impossible as doctors don't want to know!

[Angel007]

I know what you mean. It is hard when you look normal on the outside, and yet are in constant pain or discomfort.
It is difficult for others to understand what the problem is, and many will say insensitive things. There is a theory that people will be sympathetic for approx 2 months - after which most will walk away or be unsympathetic. It will be a time when you will find out who your true friends are. The thoughts are that people assume it is a short-lived illness (as most things are such as flu and virus') and get fed up when it goes on for a long time and they realise there is little they can do to help.

Some suggestions (remembering I'm not a doctor)
Gluten free diet:This does seem to help me with the dizziness and pain, as well as the gastric reactions.

Cutting out red meat: Red meat seems to increase frequency and severity of my pain and joint aches.

Keep weight down: I need to loose weight - so know it is difficult especially when you can't exercise a lot.

Gentle Exercise: Swimming seems to help, as less stress on the limbs, and seems to help control blood pressure (as long as water not too hot - which will cause blood pressure to loose control).

Plenty of sleep: In bed by 10pm is best - allows the body to recover.

Only suggestions of what works for me - find what works for you. You might also like to consider an allergy test. Many people with fibromyalgia have multiple allergies.

Good luck, and keep in touch.