It looks like dysautonomia

Discussion in 'Fibromyalgia Main Forum' started by laspis1, Feb 1, 2006.

  1. laspis1

    laspis1 New Member

    As my quest to find an explanation for my episodes/flushes/attacks got me through a serious of test for carcinoid, and couple of other cancers it does look like the endocrinologist was right. I think it actually may be dysautonomia. Believe it or not, what ever it is, it makes me much sicker than FM and it also triggers more FM symptoms. The episodes of flushing/nausea are horrible, on top of it I am burning everywhere and i feel like I am wired/overstimulated and weak at the same time, if that makes any sense. I am wearing the event monitor and the doctor told me so far it is showing tachycardia or fast heart rate. I keep reading the National Dysautonomia Research discussion forum and I am finding descriptions of what I am going through. I know some of you here experience the same things. You should look into it. Dysautonomia seems to be very little understood and it seems there are few doctors that know it. Most people on that board speak highly of Dr Grubbs in Toledo OH. I think they travel from all over to see him.

    Well today I worked one hour and had to leave. I felt so sick - there was no point. I told my boss i need to take some time off. I cannot pretend like i can do this while I feel so awful. I had my appointment with the GP. She is still puzzled by this. She was hoping it would be some kind of adrenal tumor which is benign but causes symptoms like mine. Than you take it out and you are fixed. But no. I have to have yet another one of those weired things no one knows what to do about and of course it looks highly suspicious. Luckily there are some torture chamber tests like tilt table that can prove you have it. I have also asked for an SSRI. Reading about dysautonomia, it is treated with beta blockers and SSRis. No one knows why they work for this but they seem to help. I have been through this before. I was on Lexapro and the symptoms improved. I still had FM with a lot of pain, stiffness, tiredness and lack of restorative sleep. But at least these horrible scary attacks were fewer and did not seem to bother me as much. I hope I can get it back. Please pray for me.
  2. Jen102

    Jen102 New Member

    about dyautonomia a few years ago--good article. I don't remember the particular symptoms you relate, but my understanding is there is a delay before the body kicks in to do whatever it needs to do, then when it finally kicks in, it overdoes it. Is this your sensation? Hope you get some relief. Jen102
  3. laspis1

    laspis1 New Member

    My symptoms are just as I described, the episodes/flushes, nausea, palpitations/tachycardia, feeling wired, weak, malaise. The episodes often end in diarrhea. I feel totally dis-regulated, it is like everything is off. But worst of all is the weakness with nausea. It comes in strong waves, but it never really leaves.

    Here is some information I found on the National Dysautonomia Research site. I think it resonates with some of you as it sounds similar to how CFS manifest itself.
    http://www.ndrf.org/
    The autonomic nervous system manages most of our bodily systems, including the cardiovascular system, gastrointestinal, urinary and bowel functions, temperature regulation, reproduction and our metabolic and endocrine systems. Additionally, this system is responsible for our reaction to stress - the flight or fight response.

    When our autonomic nervous system malfunctions, it is known as Dysautonomia.

    The autonomic nervous system conveys sensory impulses from the blood vessels, the heart and all of the organs in the chest, abdomen and pelvis through nerves to other parts of the brain (mainly the medulla, pons and hypothalamus). These impulses often do not reach our consciousness, but elicit largely automatic or reflex responses through the efferent autonomic nerves, thereby eliciting appropriate reactions of the heart, the vascular system, and all the organs of the body to variations in environmental temperature, posture, food intake, stressful experiences and other changes to which all individuals are exposed.
    There are two major components of the autonomic nervous system, the sympathetic and the parasympathetic systems. The afferent nerves subserving both systems convey impulses from sensory organs, muscles, the circulatory system and all the organs of the body to the controlling centers in the medulla, pons and hypothalamus. From these centers efferent impulses are conveyed to all parts of the body by the parasympathetic and sympathetic nerves. The impulses of the parasympathetic system reach the organs of the body through the cranial nerves # 3, 7, 9, & 10, and some sacral nerves to the eyes, the gastrointestinal system, and other organs. The sympathetic nerves reach their end-organs through more devious pathways down the spinal cord to clusters of sympathetic nerve bodies (ganglia) alongside the spine where the messages are relayed to other nerve bodies (or neurons) that travel to a large extent with the blood vessels to all parts of the body. Through these nervous pathways, the autonomic nerves convey stimuli resulting in largely unconscious, reflex, bodily adjustments such as in the size of the pupil, the digestive functions of the stomach and intestines, the rate and depth of respiration and dilatation or constriction of the blood vessels.
  4. GBHope

    GBHope New Member

    My son has the problem and so does my husband. Both myself and my son have seen Dr. Grubb before. I was hard case though, so he wasn't able to help me much. He put my son on Celexa and it has been a God-sent. I had a tilt table years ago that was positive and they inject with the epinephrine and then gave me Toprol XL to counteract the dropping bp. At the time, it didn't seem like I could tolerate it, but now through a strange twist of events, I have had a bout with hyperthyroidism and have been put on it and take 12.5 mg and it helps with the dizziness some too. Unfortunately, I am still having the flushing and hot flashes because I am going through menopause. Very annoying. I get dizzy for a few minutes every time I have one. I'm having one right now. Oh fudge!!!!

    GBHope
  5. meowchowchow

    meowchowchow New Member

    This sounds so similar to what I experience. Sometimes it happens after I exercise...

    all of your symptoms and then the ending with diarrhea. it's horrible! I am going to read more about this.

    Thanks,
    Meow
  6. minimonkey

    minimonkey New Member

    The autonomic nervous system is one of the major targets of CFIDS/Fibro, from what I've read -- I have all of these things -- sweating, shaking, periods of dissociation/depersonalization, migraines, nausea, etc. I'm thinking I have Lyme, actually. I've been reading a lot.

    Wonder if I am related to Dr. Grubbs? "Grubb" is a family name for me!
  7. laspis1

    laspis1 New Member

    Thanks for all your postings. I really appreciate it.

    Today I finally learned the lingo for my attacks/flashes etc. People with POTS and other dysautonomic conditions refer to them as autonomic storms. Hey, my symptom has a name. Anyway it is good to know other people out there are going through the same thing. I just think that since not everyone with FM or CFS goes through these, this may be related, but a little different condition. I do not know but I am glad that after three yrs I am finally learning.
    The bad news is that these conditions can be just disabling as FM and CFS. What are my odds?
    The preferred treatment with this disease is Wellbutrin, beta blockers and sometimes other medications like anti seizure, and others. I am back on an SSRI praying it will bring me some relief soon. I have had a number of these storms today with nausea and felt like i was going to pass out.

    For all of you who experience these symptoms please check out Dysautonomia. Unfortunately there is no cure. Surprise, surprise. But symptoms may be controlled by some meds. At least I hope so. This will sound so stupid, but I want my FM life back. I want the storms to stop, they make me feel like i am poisoned with nerve gas.
    [This Message was Edited on 02/02/2006]
  8. laspis1

    laspis1 New Member

    I am so glad you know dr Grubb. I do not believe he is a miracle worker, but he seems to be the authority on this. Do you mind sharing what other meds/strategies and tests he performed? I do not know when and if I would be able to see him. Firs I will start locally although I am a bit terrified of the runaround I may get. There is very few electrophisiologists here. So any information you can share would be appreciated. Why do you think he was not able to help you? And by the way I am sorry to hear that. This thing is so debilitating, at least for me.
  9. bpmwriter

    bpmwriter New Member

    this is a very interesting post to me. i've been experiencing new symptoms in my chest (chest wall tightness, shortness of breath) since last september that come on suddenly. chest x-ray and ekg were normal. after reading up on dysautonomia, it all sounds very familiar including the sudden sensitivity to caffeine. the only thing is, ssri's make it worse for me. i used to take lexapro and tolerated it well, but now it causes these symptoms to be more frequent and when i try to increase my dose, they really go crazy and include numbness in my left arm. do you think that rules out the dysautonomia dx for me, or has anyone experienced this on an ssri? before going back on the lexapro, i was taking 50 mg ultram (tramadol) everday and that seemed to help.

    eddie
    [This Message was Edited on 02/02/2006]
  10. laspis1

    laspis1 New Member

    unfortunately people with dysautonomia have the same unpredictable reactions to meds as those with FM and CFS. So ti is rally hard to say. If you have chest pain, talk to your doctor, they should give you a hart monitor and send you to a cardiologist or electrophysiologist. If ultram helps you with your symptoms that's great, but make sure there is not more going on with your heart.
  11. bpmwriter

    bpmwriter New Member


    thanks for replying. i had an ekg and chest x-ray and my principal care started me on lexapro after he found about my history with anxiety. i've had panic attacks, but these are not panic attacks. the heaviness just sort of sweeps in and hangs out for an hour or two at a time, feels like a tiny person sitting on my chest.

    what's the next step for pursuing potential heart problems? an echocardiogram? the chest thing is all new to me. i've never had chest/lung problems before.

    eddie
  12. laspis1

    laspis1 New Member

    Eddie, this heaviness on your chest is a serious symptoms, please insist on more testing. Lexapro is great for anxiety, but they need to rule out everything else. You need an echo test, stress test and some other tests I cannot remember at the moment. Do not wait. If it turns out that there is nothing serious going on, than stick w/Lex, but you need to make sure.
  13. bpmwriter

    bpmwriter New Member


    i've tried and tried to figure out the triggers, time of day, etc., but the symptoms seem to come on randomly. the only thing i've noticed is that caffeine may be a trigger, so i'm going to try to wean off caffeine. but it's likely more of a an aggravating factor than the cause.

    eddie
  14. daylilyfan

    daylilyfan New Member

    I have not heard of dysautonomia. I have been having a rough time with Reflex Sympathetic Dystrophy .. RSD .. (Now called Complex Regional Pain Syndrome) which has to do with the sympathetic nervous system.

    I have times when my body temp will swing all day long from 96 something to 100 or 101. My RSD started in my shoulder, but now affects my upper arm bicept area the most, and also goes down to my hand, includes my shoulder blade, part of my neck and a small part of my face. Although I don't have much pain in my hand, it's where the symptoms that you can see with your eyes show up the most. My hand will be almost normal looking, and half hour later, be deep red like it's been in extremely hot water for hours. My hand will be normal temperature to the touch, then 5 minutes later, be icy cold. It's the darndest disease to have. The worst part is it is SO painful. It is agony. Mine is finally starting to settle down some. Feels like 20 knives stabbing you at once, while you get hit by electric cattle prods.

    I wanted to say, that RSD is usually treated with anti depressants, anti convulsants, muscle relaxants (the WORST muscle spasms you can imagine are mild compared to RSD spasms.) I take Topamax and works well on the nerve pain, tremors, muscle shakes (I have what would look like restless leg syndrome in my arm muscles from the RSD) and, it has kept me from having the terrible burning that most RSD people have. Lyrica, Neurontin are used to, but I tried Neurontin several years ago and had terrible time with it, so I have taken Topamax for a few years now. It was just wonderful luck that I was on a pretty high dose of it when RSD hit. Topamax probably kept the RSD from being as bad as it could have been. Most RSD people cannot stand to have any wind, or clothing touch them. I've been lucky not to have that.

    So... since these things sound somewhat related.... I would try topamax and see if it helps.

    There are no docs that know RSD that I can find in my area, so my family doc has really done great to step in and treat me. She has read that Wellbutrin is very good for RSD --- normally it's treated with Cymbalta, doxepin, Lexapro... but I can't take those. I just got a script for Wellbutrin to try. I took it years ago for pain, so maybe it will help.

    RSD can also be treated with beta blockers. These diseases really have a lot in common, but it does not sound like the dysautonomia has the agonizing pain of RSD. Or, the swelling.

    On the pain scale, RSD rates higher than natural childbirth.... yet they don't recommend pain meds because of the "potential for dependence." I say, let just ONE of those people spend ONE WEEK in my body with RSD, and see if they think the same way after that.

    So, try topamax, or even neurontin or lyrica if you can... almost everyone with RSD takes one of them....
    [This Message was Edited on 02/02/2006]
  15. laspis1

    laspis1 New Member

    I am so sorry to hear about your pain from RSD. It sounds awful. You are however right, these things are related. These disease are all on a spectrum and that is why they appear to be related and yet it is the severity of a particular symptoms that gives it one name or the other. Dysautonomia is not one condition, it is a whole host of conditions.

    The burning pain I have is mere widespread. I did have several episodes of severe burning in my abdomen. That was awful. It felt like nerve gas poisoning. Anyway, I think that you are right about the meds. Unfortunately i think I am ahead of the doctors and it will take some time before they firm up diagnosis and put me on sth that can help. That is the most frustrating part. i hate taking meds but I know that at this point this is my only hope at least until I get some handle on it. Thanks for the post.