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

and

Evo123
Community Leader

[LivingInHope]

Welcome to the dysautonomia forum!

I know there are those who have posted on here who have NCS (neurocardiogenic syncope) and at least one who has been diagnosed with PAF (pure autonomic failure).  I have been diagnosed I.S.T. in addition to P.O.T.S., I.C., I.B.S., and migraines- all of which can be associated with dysautonomia.  I had an apparent pituitary microadenoma in the past, presumed to be a prolactinoma.

You mention you have plunging blood pressure- is it orthostatic in nature or does it happen at rest as well?

I interpret from what I see on line that a lack of dopamine from the hypothalamus gland can cause a prolactinoma on the pituitary- has a neuroendocrinologist determined you have this type?  Since you have a pituitary tumor (how large is it & is it a microadenoma or macroadenoma) and plunging blood pressures, have they ruled out Addison's disease?

With the higher blood pressure and tachy times- since you have not been diagnosed with P.O.T.S., have they ruled out pheochromocytoma with a fasting plasma free metanephrines test?

I find that side effects of Clonidine can include not only dizziness, but a number of cardiovascular side effects are possible with it also.  (See private message)

I have not gotten evaluated for my dysautonomia at one of the big dysautonomia specializing places, but I think they tend to do testing and might prescribe a course of treatment you would follow up with on with your regular physician, but for many, I don't think they get regular follow up from places such as Vanderbilt or Mayo- maybe others (if a new thread is started as they might not look at this one started long ago) would share about their experiences.

Also, you might want to post on this forum as well:

http://www.medhelp.org/forums/Brain-Pituitary-Tumors/show/307?controller=forums&action=show&id=307&camp=msc

  

[Arasevera]

I am hoping that this community is more about all dysautonomias and not a place to cater to POTS pts only...was dx'd with "autonomic nervous system dysfunction." No catchy little acronym like POTS for me! I have had 2 tilt-table tests, and what the docs at BIDMC in Boston called a "complete evaluation," including a bunch of blood and urine tests. However, for "experts" in this filed, they seem not to be all that concerned that I have ZERO quality of life, that I am an embarassment to my husband b/c I have to sit down on the floor in malls, store, etc. due to my plummeting BPs, and that I cannot take Florinef (evil stuff - gave me horrid migraines) or midodrine (even more evil than Florinef - cranks my BP so high, even after to is supposed to out of my system). They have blatantly ignored me for 6 weeks now - I was asked to send them BP charts (my snail mail - they don't believe in email) and was told they would call me in a week...the calls have never come. Thank God my cardiologist is somewhat familiar with this disorder and gave me meds (Clonidine) to help with higher BP and tachy times. But still, no one seems to care that at 49, I am basically house-bound. Frankly, its a bit drecky reading about these kids with "severe" POTS that play sports, go to school, and basically get around just fine. Why do kids get all the attention and treatment? Are we adults just disposable and useless?  The way these docs have treated me sure make me feel worthless.
I am an avid researcher - I have professional experience in researching medical and legal topics for over 20 yrs. So, I have found that there are other treatments for ANS disorders being used BESIDES the ol' Florinef and Midodrine. Why aren't these being offered to folk like me that cannot tolerate the "go-to" meds? Also, why are docs rx'ing SSRI's and SSNRI's to people with dysautonomias  - orthostatic hypotension is a SIDE EFFECT of most of these meds. I was pried off of Cymbalta and was told not to EVER take that class of meds again.
So, I am trying to figure out if it is worthwhile look into traveling to either Vanderbilt. Cleveland or the Mayo...or Dallas or NYC - in the attempt to find docs that will treat me as an actual patient and not ignore me - or, if it is even worth it. I believe that I am a candidate for the orphan drug Droxidopa (Chelsea Therapeutics - i've already talked with them) coincidentally I have another issue (a pituitary turmor) that is related to dopamine disruption. I also have many other sx that go along with lower dopamine levels...
Thoughts anyone?

[BREnurse]

Oh my do I have a story that could go on for days! Let me begin with, I was diagnosed with dysautonomia(POTS) Nov 2010 and have since lost my first full time job as an RN. I am 25 yrs old with only 2 1/2 yrs out of school! This has been extremelly hard to live with. Nursing is/was my life and I will not let this nasty disorder take it from me! I have been on a beta blocker for 8 months now and it has helped with keepin my heart rate below 125 standing.  however its still now where it should be.  And like you my bp drops in 80s/50s.  It is extremely hard to get out of bed everyday.  They say to elevate the HOB to help tho i dont see how that would since blood pools in our lower extremeties.  I have to drink tons of water to stay feeling halfway normal. I still have confusion and not enough o2 to my brain either.  i havent found a doctor yet that even carres to help me.  I live in the midwest. I am currentlly looking to move to San Diego CA as i have read its one of the best places for us to live.  hopefully can find a good doctor out there. To answer your question, you may to increase the dose of your beta blocker:) also find a good doctor.  If anyone can tell me their experience with San Diego living plz do!!!

[ezim77]

Im 33 years old I have no idea whats going on!They think I have POTS I have never had any symptoms or major illnesses. One day at work (june 7 th) started to feel dizzy, got real hot, chest palpitating, fingers and hand got numb. I thought i was having a heart attack.Then i passed out for only a min though. I work in a hospital so they took me to ER. They sent me home said i was fine. Next day ended up in ER again, and again they sent me home i was fine. For three days i laid and did nothing. I then decided im living my life. Went shopping with my husband, not a good idea. I almost passed out again, I had to lay on the ground. Later that night i must have pushed myself. I thought i was gonna dye. My heart was pounding

I called 911, they admitted. I stayed 3 days. Failed tilt table test in 2 mins. They put me on Florinef for a week, no success. Today is day 12 on Atenolol (beta blocker), kinda scary b/c my bp is low to begin w/ 95/65. It get down to 85/58at times. It did lower my heart rate from 115 standing to 85-90. However, it did not solve my problem. I still get the chest and throat tightness, dizzy and lightheadedness, brain fog and confusion all w/ standing only. Im fine laying and ok for the most part sitting. I just cant have my legs hanging. No symptoms until my legs are in a standing position. Does it take awhile for the beta blockers to work? Or maybe i need to try Midodrine (a vasoconstrictor) blood could be pooling in my legs. Did you try Midorine before. I feel like im not getting blood to my head and tht would explain my symptoms.

I am so completely confused and sad. 4 weeks is a long time for me to sit and do nothing. I went from full time job, part time school, being a mom and wife--------to sitting and doing nothing. Where is the cure, research, help? Sorry had to vent.
HELP!

[Katatonia83]

Hi, my name is Caroline and I was diagnosed a few months ago with POTS. I'm still very confuse and I don't fully understand the whole thing. I can't wait to meet with the neurologist and ask questions! It's nice to see that I'm not alone in this situation becaue for a while I felt like I was crazy !!!

[ABarton72]

Hi!  My name is Andrea.  I have been diagnosed with orthostatic hypotension, neurocardiogenic syncope, and complex migraines (they mimic stroke).  I've had many tests done only to confirm that they really don't know what's going on.  I see a new doctor- some one who specializes in syncope in January.  Until then I have been taking it one day at a time.  I haven't been able to do much and its really hard!  My house is a mess!!!  Laundry is piling up and I am embarrased to have visitors.  Like many of you I would agree that sympathy and understanding has definetly worn off.  It was as if everyone came rushing to the hospital the first time. A few the second time and noone but my husband and kids from there.  My husband is very understanding!!  He would rather I take it easy and only do what I can manage but I know he is tired of toting my load too.  He works all day and sometimes evenings too.  Then he cooks and picks up.  I feel bad for not being able to feel good.  When I do feel good its all about answering to work and picking up my house.  Today I am actually out of bed and down stairs.  I am hoping to put down stairs in order as a suprise for my husband.  At any rate I am so glad for all of you who know exactly what i am going through.  I am open to any suggestions.  Thanks- Andrea

[Marinella82]

I feel for you.  I have all the same symptoms as well...I tell my doctors I'm having chest pain and feel like im choking and they tell me it's anxiety and want to give me antidepressant.  I take those and it makes me worst.  My friends see a healthy person but sometimes I can barely get out of bed and I'm always dizzy.  I know exactly how you feel but hang in there these things take time and meds do help but it may take a long time to find a combination thats right for you.  Stay possitive.

[Marinella82]

Have you had a lyme disease or co-infection test?

[Heiferly]

Yeah, this is just a "sticky" thread to welcome new people to the community.  To post your own question/comment, please start a new thread of your own.  (It's kind of confusing, because as you can see, others have been confused just as you have above you.  As of yet, MedHelp doesn't have a setting for us to make these Welcome posts blocked to responses to prevent this confusion.  Sorry!!)  To start your own thread, click on the green "Post a Question" button at the top of the page in our forum.

If you have any questions about how to do this, you can contact me directly by hovering over my username in this response ("heiferly" in blue) and clicking on "send message" in the drop-down menu that appears.  Thanks, and welcome to our community!

[LaLa4]

I just realized this thread is over a year old.... anyone still out there?

[LaLa4]

Hi,
I've been diagnosed with POTS (although my symptoms are not restricted to being in a upright position) and I feel like every day I'm plagued by something.  You all have mentioned that it's so hard to look normal but feel so bad because people don't believe you and don't understand (my friends and family frequently think I'm just lazy and this is SO offensive to me!) and I think your theory that people are sympathetic for 2 months and no longer is so true.  It makes me question myself and the last thing I need is more anxiety and racing  heart! I'm not sure that I know what "normal" feels like and I wish I could experience it for just one day so I had a reference!  I'm going to go to the Cleveland Clinic I think because my life has consisted of going to a series of doctors who don't believe me and dismiss me, only to realize later on that there actually is something wrong but even then they don't give it any merit.  My cardiologist keeps insisting that I must be depressed even though I keep telling him that despite all this I am very happy! I also have exercise induced asthma and I had one pulmonologist, when I was 13 (long before I was diagnosed), insist that it was in my head and literally wrapped my entire chest and abdomen tightly with masking tape to restrict coughing. I can't even describe how physically painful this was and imagine when he pulled the tape off... it ripped off my skin right with it.... And that's just one story of many....
Anyway, I've been dealing with POTS for over 10 years and it seems to progressively get worse so I'm curious what everyone's experience is as far as long term prognosis and lifestyle.  I'm not working right now and haven't been for a few years. I feel like I can't be reliable because I never know how I'm going to feel from one day to the next so I don't want to commit to anything.  Is this common? How do you deal with it? Are you able to work? Any other insights at all?
I'm glad to have found this site...as much as my family and husband and friends may love me, they will never understand :(

[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.

[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!

[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

[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?

[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

[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.

[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.

[GoodnessGoddess]

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

[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.

[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.

[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.