DYSAUTONOMIA, OI and Us..Important..PLEASE READ

Discussion in 'Fibromyalgia Main Forum' started by Hope4Sofia, Sep 16, 2006.

  1. Hope4Sofia

    Hope4Sofia New Member

    I just wrote this in response to another post but I feel it is important for all of us.

    If you haven't looked into this possibility it is worth considering. There is a lot of info on the internet. Look up Dysautonomia (not familial dysautonomia).

    I recently did the tilt table test and was diagnosed with definite orthostatic hypotension.

    With this and other testing my neurologist diagnosed me with dysautonomia - mine is generalized or pure autonomic failure.

    Mine also appears to be hereditary as my aunt has CFS and brother and cousins are highly symptomatic for OI, etc.

    I have a great deal of fatigue but also have significant neuropathic pain along with GI issues and more. (As many of us do.)

    This is important to get diagnosed as they handle treatment differently than they do with CFS or FMS. I was preveiously diagnosed with FMS and was not taken seriously until now.

    All of a sudden I have a cardiologist, GI specialist, and Gynocologist at my disposal thanks to my neurologist.

    Neurologists are typically the ones to diagnose this condition as many DR's aren't familiar with it.

    I highly suggest going the extra step to get it diagnosed - but do it right. Go through a good neurologist if you can. A tilt table test is one of the best ways to find it - although it is a miserable test. I've been complaining about it for 16 years and have progressively gotten worse so be persistant!

    This is a serious illness.

    Good luck!

    Sofia
  2. Leaknits

    Leaknits New Member

    Like many others here who have myalgic encephalomyelitis and/or FM, my BP and temp have always been low-low.

    Recently, though, the BP is rising. More than likely that's due to stresses like my having to move, dealing with uncooperative utility companies, and the like.

    Now. Here's why I'm writing: even though I tell my newdoc's assistant, wife, file clerk (Those are all one person...newdoc is operating on a shoestring!) that my pressure is going up, she tests it and says "Oh but this is good, you are at normal or a little bit below normal."

    She DOESN'T GET IT that I'm now dealing with rising bp. I think, and it's okay if anyone wants to tell me I'm wrong, that a constantly rising bp even if it is at what is termed "normal," can indicate a possible problem in a person whose bp has always been low or VERY low.

    Oh cripes, I hope I don't have to locate some place that does that tilt table test thing; for one thing I'm pretty sure without even checking that here in the back of beyond in northern CA there's no such testing possibility in the county where I live and for the second thing, the details of the test make me want to go hide under my bed!!

    Lea.
  3. Hope4Sofia

    Hope4Sofia New Member

    What are your symptoms? Do you black out or get light headed at all? For me it happens when I stand from a sitting postion or if I'm standing for a period of time.

    People with OI can have high or low BP when resting but it's what happens when they experience the syncope symptoms that matters. For instance, when I was tested my bp dropped from 98/59 to 55/35 and my heart rate jumped up above 140. That's orthostatic hypotension.

    This doesn't show up when they just take your bp in the dr's office. And a lot of Dr's don't look much beyond that. The doc's that listen to you on this issue are the neurologists and the cardiologists.

    A tilt table isn't always necessary if they can get the results by taking your resting bp Laying down and then your by upon standing. That didn't show my problem so they oredered the tilt test.

    All they do on the tilt test is strap you to a table, hook you up to monitors, and stand you up. It sounds simple enough but if you have OI it makes you violently ill. It was worth it though. The docs take me much more seriously now that I have clinical evidence to back me up.

    Blessings,

    Sofi
  4. Hope4Sofia

    Hope4Sofia New Member

    bumping for others to see.
  5. mrstyedawg

    mrstyedawg Member

    I,too, have been diagnosed with autonomic nervous system dysfunction. I was diagnosed at John Hopkins, but all of the doctors that I have seen, say that there isn't a proven treatment for this.

    What are you taking for this? Do you think that CFS is actually dysautonomia or is this a symptom of CFS? What does your treatment consist of?

    Any help will be appreciated.
    Andrea
  6. Hope4Sofia

    Hope4Sofia New Member

    My Doc also says there isn't any proven treatment for dysautonomia but they have a little better idea of where to start. They have put me on the blood pressure med, Toprol for now. We're watching to see what happens.

    I'm already on Cymbalta and Neurontin.

    Next week I have more nerve conduction tests to see the extent of the neuropathy.

    They also take the hypoglycemia much more seriously now, since it is a proven by-product of dysautonomia. I've been complaining about it for years but the docs ignored it since it didn't show up on the glucose tolerance test.

    I don't know what comes first, they're trying to figure it out. For me the dysautonomia and CFS seemed to start all at once 16 years ago along with the episodic cluster headaches. The FMS kicked in about 6 years ago.

    Honestly, I don't know if I truly have FMS and CFS or if the dysautonomis is responsible for everything since it causes all the autonomic systems to malfunction.

    What I have found is that my Dr's are taking me more seriously with the dysautonomia diagnosis. It just the element of proof I guess.

    It's amazing, in the olden days, before medicine had all it's fancy testing and advances, all they could do was listen to the patient. If the patient said they were sick, they were sick. Hmmm.

    Sofi
  7. barbinindiana

    barbinindiana New Member

    I'm so glad you made this post, and I hope everyone on the board reads it. There has been a lot of people here that have posted about problems like breathlessness, easy sweating, heart palpatations, and feeling bad when standing. These can all be orthostatic intolerance problems. I even get a tightness in my throat if I have to stand too long.

    I told all the doctors I went to for years about having these symptoms plus others that are associated with dysautonomia, and none of them ever said anything to me about a tilt table test.

    I finally ran across info on the net, and right away knew that I needed to tell a doctor I wanted to have a tilt table test done.

    Of course I passed out. I was diagnoised with neruocardiogenic syncope. Almost as soon as I came to, I started crying. Not because the test was so bad, but because I finally had proof that there was a real reason for all my crazy sounding symptoms.

    I was so sick and tired of doctor wanting to just up my depression medicenes all the time. They wanted to blame everything on depression.

    The years I was sick before I got a positive test for anything were awful. I had doctor talk so mean to me, and treat me the way no doctor should treat a patient.

    I hope everyone here that thinks they may have an orthostatic intolerance problem and haven't been diagnosed, will seek a test to get the condition put in their medical records.

    Barb



    [This Message was Edited on 09/24/2006]
  8. Hope4Sofia

    Hope4Sofia New Member

    bumping again.
  9. Harmony

    Harmony New Member

    I also have OI (dysautonomia) and was finally diagnosed with it this year. I had the Tilt Table Test and my bp went to 50/30! I felt like I was dying. But I was glad to get the diagnosis because it explains my symptoms other than the Fibro and CFS that I also have. I also put off the Tilt Table Test for a couple of years but I finally did it and even though it was not "fun", it was good I had it to confirm it.

    Harmony
    [This Message was Edited on 09/28/2006]
  10. mezombie

    mezombie Member

    Johns Hopkins U. used to have a lot of info on treatment that they gave out because they were overwhelmed with patients seeking treatment. The JHU researchers who made the connection between CFS and dysautonomia in the mid-90s are Dr. Peter Rowe (pediatrician) and Dr. Hugh Caulkins (sp?) (cardiologist). They should at least respond to your PCP if not to you if asked for info.

    Generally, an increase in salt (just salting foods) is suggested. Among the treatments are Florinef in low doses (which I take), Midodrine (which I had to add), beta blockers, and others.

    Before I took these meds, I was able to stand or sit for only 15 minutes or so a few times a day. Now I can actually move around my home and get out sometimes!
    [This Message was Edited on 09/28/2006]
  11. mezombie

    mezombie Member

  12. Hope4Sofia

    Hope4Sofia New Member

    Thanks for your input Mezombie.

    I am currently on Toprol XL which I haven't really noticed any inprovement on.

    I have also been salting my food and drinking a lot of water.

    I also recently read an article that suggested that dysautonomia accounts for all of the symptoms of FMS. It's already associated with CFS. It was interesting reading.

    I go in this week to meet with my doc. If I learn anything interesting I'll post it.

    Take care!

    Sofi