E Soskis

Seems a little low-dose to me

I take 10mg at a time and it begins to work within 15 minutes with full effects by 1 hour

Autonomic dysfunction strikes again! This time, it is the parasympathetic nervous system - sounds like Raynaud's phenomena - in my case, not only does my right hand feel cold, my fingers (especially my index) will turn very white and lose all feeling - the winter season is a killer on my hands and feet - even when I keep them bundled up and wear gloves - my co-worker bought me a camping "hand warmer" - nice little packet that when activated, will remain warm for a few hours and keep my hands from freezing to death!

Just when you think life can't get any worse.....I'm sorry - I've been there before and it's not pretty - you are with a group who does understand - it is not just a spouse that lets you down - anyone and everyone eventually will stab you in the heart - we have a disease that is incomprehensible to 99.9% of the population, including family members and close friends - I mean, if our doctors don't even understand, how is anyone else going to "get it"? - Of course, the behavior of your husband is not excusable - he made his choice and now, you have to make yours - whatever that may be. Just know, you will get through this and you will be stronger than ever - your kids may be bewildered now but, in the long run, they will see the new you emerge and be very proud of you and your strength. I may be physically weak but, emotionally, I am a rock now that I have faced down my demons.....and defeated them - you will do the same!

I was on low-dose methylphenidate for years - worked great - until a few months ago when it became one of the hundreds of drugs that is now in short supply in the US - my pharmacy searched and searched but, was unable to locate any supplies so....I was abruptly pulled off - went through horrible withdrawl and now, 3 months later, it is back on the market - so...no thanks - no more methylphenidate for me - I am not willing to go through withdrawl again when the companies decide they want to lessen the supply in order to drive up prices. My insurance company denied new-generation alertness drug prescription- no wonder - methylphenidate was costing me about 10 dollars a month and the new prescription was close to 500 dollars a month - hummmm...drug company conspiracy?????

Any other suggestions for medication that keeps us alert and functional? - must be very careful with herbals - they interact with many prescriptions and cause liver damage.......

I can speak to the GI symptoms....they are awful! I've gained 11 pounds in 2 weeks and am so bloated that I had to go buy larger scrub pants just to fit around my round tummy - saw the doc today who shrugged his shoulders and said it was all related to the dysautonomia - manage as best as I can - "You're doing fine" - sure I am! I look like a "teletubby"!!!!!!

Well Hallelujah! - I'm not the only one in the world with this problem. I've had this for years. I get a scratchy throat, begin to feel like I'm coming down with something - kind of achy and tired - even a low-grade fever - my joints will ache - I prepare myself for a battle with the flu or a bad cold and....it all goes away in a couple of days....I think it is part of my AAG (autoimmune disorder) - ....maybe we are all related in some fashion!

Ditto with Canadiangirl73 - it does not always make sense - in fact, I've had one half of my body hot and red and the other half cold and blue - MD tells me it is just part of the dysautonomia - very annoying.......

I go to the ER when I am so dehydrated, I cannot hope to recover without IV fluids. If I need more than a couple of liters of fluid and don't quickly re-group, I am admitted for a few days. I also have to go now anytime I run a fever over 100.5 oral since I have a central IV line (permcath) and I could easily get an overwhelming systemic infection -

I can pretty much stay home during big flare-ups - I have an arsenal of medications for just about any symptom. It is the IV fluids that I can no longer administer to myself at home due to the central lines and possibility of infections.

I have AAG (autoimmune autonomic ganglionopathy) - it is a rare autoimmune disorder that I suspect is not as "rare" as the doctors tell me - it is a form of dysautonomia with all the typical symptoms of autonomic failure - I have flares where I can be very ill for a period of time then sort of regroup until the next flare. I have noticed that with each episode, it takes longer to bounce back and I never fully get back to where I was.......

AAG = autoimmune autonomic ganglionopathy

My immune system has gone haywire and is producing antibodies against itself. The antibodies attach to the nerve endings (ganglia) and slow it down or shut it down. The sympathetic nervous system is mostly involved but, as it progresses, the parasympathetic system is jumping into the mix. The symptoms are mostly what everyone with generalized dysautonomia experience - the heart rate is the big difference between AAG and POTS - since the nervous system is shutting down, so is the heart rate and function.....

I am so blessed to have found this support group - I am appreciative of all the comments I read - It is so nice to be able to describe something that is going on and have people understand - dysautonomia can be a lonely disease and now that I have this group with which to commiserate, I don't feel as alone.....

Well....the Autonomic Nervous System is charged with regulating our internal functions. It is broken down into the Sympathetic and Parasympathetic systems. The sympathetic system is responsible for our "fight or flight" responses. This includes our blood pressure and heart rates. When we place increased demands upon our body...such as walking up stairs....we are requiring more blood flow to sustain the exercise. The primary way we get this is through increased heart rate which increases the blood flow, cardiac output, and ultimately the blood pressure. We also experience vasoconstriction which increases our blood pressure. Once the blood pressure is high enough to support the activity, then the heart can slow down a bit and get back to normal and our vasculature can relax a little. BUT.....

Since we all have been blessed with malfunctioning autonomic nervous systems, the whole "normal" response gets thrown right out the window! Hence, with POTS, the heart rate rises way too much and with AAG, the heart rate drops precariously low. Our vasculature is floppy and does not respond well to vasoconstriction and/or dilatation. There is a whole lot of inbetween tossed into this mix so....it is not always predictable for any of us to have a "normal malfunctioning" response. I call it, "never a dull moment" - and "always something new to look forward to".

Oh dear....so sorry...just when you think it can't get any worse.... It is so frustrating when new problems just keep adding up - such a challenge! I usually don't mind challenges but, seriously...one thing after another after another....enough already!

"Bipolar" is the popular psychiatric diagnosis of our times - more and more people (especially women) are being labeled "bipolar" simply because it is convenient and covers a myriad of symptoms. Before being diagnosed with AAG (the proper diagnosis), I was diagnosed as "bipolar" and given a cascade of medications that made me sicker than I already was. Luckily, I had a psychiatrist who recognized I didn't fit the profile and he began researching - his conclusions were correct: I did not have a psychiatric condition but, some undiagnosed disease process - probably autoimmune related. I found out later that often the first symptom of AAG is...depression that mimics bipolar. Go figure! So, I look with skewed eye at anyone conveniently diagnosed with bipolar that has previously not exhibited symptoms and has no genetic history that would suggest mental illness. - not judging...just saying may need to dig deeper......

I've been on beta blockers for years without any bad side effects - the parasthesias appear to be from the raynaud's that has come from the progression of autonomic dysfunction

It depends upon how "off" the results are. The "normal" ranges for most test results are compiled from average ranges of results on "normal" people. Dysautonomia really skews "normal" results. This is particularly true with thyroid functioning in women. Studies are now showing that the "normal" range for thyroid function tests are not accurate for most women - I have a friend that is terribly ill with thyroid dysfunction despite having a low "normal" level. You also have to look at the whole picture. Is the test result a random finding? I freaked out when I had a platelet level that was considered in the range of "thrombocytopenia" requiring emergent intervention - until I realized that plasmapharesis will cause random low platelet counts. Your physician should be willing to explain random readings and what each test means in relationship to your physiology and disease.

I don't know what causes it but, I wake up multiple times in the night with my skin so hot, it burns to touch. When I place my hand where I've just been sleeping, the sheets are very hot. I don't sweat very much at all due to the AAG but, I sure can turn red and feel like I am about to burn up! -

You may have a local pharmacy that compounds - we have a family owned compounding pharmacy in town and they compound the salt tablets - they are 1gm tablets and my MD told me to be sure I had at least 6grams/day.

Sensitivity - that's what it is called when you suddenly react to something you have never reacted to before - developing sensitivity.....On a good day, morphine makes everyone itch....it sounds like you (Rachel) had an anaphylactic reaction to morphine so, you definitely don't ever want to take it again. Everyone has different reactions and side effects from medications. I think those of us with autoimmune issues are particularly sensitive to pain medications and anesthetics. I can take a pain pill and break it in half, put it with a tylenol or advil and have great pain relief. If I took the whole pill, I would be sick as a dog. In fact, I hate taking pain pills (narcotics, etc..) because they just mess my whole nervous system up. I also believe those of us with autoimmune problems experience pain in a whole different way than other people do. I have a very high pain threshold - more often than not, when I am in the hospital the nurses have to help me recognize that I am in pain when I become restless, agitated, and fidigity - I just don't interpret pain like most people do......

One of my physicians suggested I try a gluten-free diet so...I tried...a couple of months and I had enough! I was starving to death and felt so much worse that I gave up. I have a friend who has MS and it has made a world of difference for her - I think you have to try but, be aware it may not work or be happy it does work!

I have 2 thoughts: 1. Sometimes, the cold will cause a release of histamine which will stimulate the itching - usually to whatever part is exposed to the cold - 2. I have raynaud's from my autoimmune dysautonomia - when my hands are exposed to the cold, some of my fingers will turn bright red then turn a blanched white - losing all circulation in them - it does not necessarily itch but, it feels funny - this year, I've had it in my toes as well.....

It is normal for heart rate to drop while asleep - it is also not abnormal to have a "skipped" beat or two while sleeping (PVC's) - the problem for me came when my heart rate dropped to 20-40 and wouldn't rise even when I tried to "exercise" (before passing out)! A pacemaker has stabilized my rate to a steady 72. I now have thousands of "sudden rate drops" during the day and night but, the pacemaker kicks in and I don't get syncopal anymore. I think you need to know if there is any cardiac nervous system involvement with whatever type of dysautonomia you are diagnosed- my cardiologist is an electrophysiologist and picked up right away on the problem and underlying cause.

Midodrine is my friend! I have a life back because of it. It helps my vasculature not be so floppy - it raises my very low blood pressure - helps me think better - lifts the "brain fog" - and improves my overall "well-being". The only side-effect I have is the very common scalp tingling. Occasionally, my BP will get a little too high and I'll hear a "throbbing" in my ears but, that is pretty rare.

Thank you all so much - I appreciate the resources

I'll pass them along......

After having 5 surgeries last year, I can definitely say I'd rather not undergo anesthesia again.....but, at least the anesthesia group here in town is interested in learning more about autonomic dysfunction........

I know I have read about the administration of anesthesia to people with autonomic dysfunction - I can't seem to locate the references on the subject. Does anyone have a reference for an anesthesia journal or medical journal? - I have a friend who is a nurse anesthetist and is requesting information on the subject - he would like to present a talk to his anesthesia group on the subject since most anesthetists and anesthesiologists are not "up" on the topic....

Thanks so much!

Hum...you may be onto something with the salt - I quit taking salt tablets some time back and I know I'm not getting the 6+ grams/day that I'm supposed to have - maybe I'll try the tablets again - there is only one pharmacy here in town that compounds salt tablets - I guess I could just take regular table salt - yum...sounds appetizing doesn't it!