Autonomic dysfunction (blood pressure, heart rate)

Discussion in 'Fibromyalgia Main Forum' started by sreges, Jun 28, 2008.

  1. sreges

    sreges Member

    If others are interested, I'd like to start a discussion about what a cfs doctor once described to me as "dysautonomia." It means an inability to control autonomic functions like blood pressure and heart rate. I'll mention just a few particulars in this message and follow up with more info if there is interest.

    I've had cfs for almost 20 years and I have many of the classical symptoms. For example, I've been reading with great interest the results of the Montoya study because I am one of those cfs patients with extremely high EBV titers.

    Those of you who have been dealing with this as long as I have may remember that there was a similar excitement about studies being done by Dr. Hugh Calkins at Johns Hopkins in the early 1990's. He found that many cfs patients had "neurally mediated hypotension" (NMH) as measured by what's called a tilt table test. I went to Johns Hopkins and had the test done and I tested positive. That was quite an experience in itself, including the fact that I was bedridden and unemployed at the time, so I had to pay the several thousand dollars myself to have it done. Unfortunately, the enthusiasm tended to die down afterwards because they were unable to show that the usual treatments for NMH worked for cfs suffers (florinef, beta blockers, etc).

    I am seeing a new doctor in Seattle and I mentioned that when I stand up, I start to sweat and my heart races. He asked me to show him, so I stood still for 3 minutes. In that time my heart rate shot up to the 130's and my blood pressure shot up to 180/140. He said, "Now that's impressive."

    He pointed out to me that there is a new name for this. It's called POTS (Postural Orthostatic Tachycardia Syndrome). There's a nice website about it here:

    http://www.dinet.org/

    It's known that an unusual number of POTS sufferers have cfs. Let me also point out that there was a great article published about this just last month in a medical journal called Circulation:

    http://circ.ahajournals.org/cgi/content/full/117/21/2814

    I'm particularly curious about the fact that they recommend treating people with Mestinon. This is also known as pyridostigmine, which you might remember from the first Gulf War (they gave it to soldiers to combat nerve gas and some people think it made them sick). I plan to ask my doctor about Mestinon the next time I see him.

    I have lots more I could say, but let me see whether this is a topic that others are interested in discussing.
  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I have said this before. I believe the dysautonomia is the malfunction that would be described as predisposition. Then when the stressor comes, usually after we have gotten older, we get sick. The dysautomia we lived with without having major symptoms is pushed to a breaking point that homeostasis can no longer be maintained. So we spiral down with system after system failing.

    I have had vasovagal hypotension since I was 5. Fainting spells, which lead to seizures.

    And I thought it was Khomaroff at Hopkins who found the high number of OI in CFS patients.

    Tina
  3. sreges

    sreges Member

    There were several doctors involved in the original NMH findings, but my impression from being a patient there was that Calkins was the main guy. I don't think Komaroff ever did this kind of research, or if he did, he did it much later.

    I've found over the years that Dr. David Bell has pretty good advice about cfs. He said back in 1999 that this work "was the biggest leap forward for CFS in many years." He also says that, "CFS is not NMH, but NMH is certainly a part of CFS." Full text of Bell's comments available here:

    http://www.pediatricnetwork.org/medical/CFS/bell-commentary/nmh-cfs.htm
  4. marti_zavala

    marti_zavala Member

    I would not consider POTS to be a new name. There are several names for this type of issue, each relates to a slight variation. NMH, POTS, OI are generally the same type of issue with slight variations.

    Unlike the previous poster, this was never an issue for me until my sudden onset at age 38. It believe that is a symptom caused by the cascade response of sudden onset, where system after system fails.

    I do not think NMH is the cause of CFS but just another annoying symptom that steals the life from you.

    I use compression socks, sodium chloride/potassium chloride per Cheney's recipe. I do not use any of the pharmaceuticals because I don't believe that they work very well. These systems are so finely tuned that it seems silly to think that a pharmaceutical can provide the nuanced levels of chemicals needed to adjust.

    Take a pill once a day or twice a day to replace the thousands of adjustments our bodies make to alter our blood pressure, transmit nerve signals. It can't be done. (maybe with an embedded pump of sorts but the chemistry is still too complex.

    That is just my humble opinion.
    Marti
  5. moreinfoplease

    moreinfoplease New Member

    There are several different parts of this that I am interested in.

    First, do any of you also have joint hypermobility syndrome (see other current post on this). I was recently diagnosed with POTS, then a couple months later my knee dislocated while I was standing in a store, causing me to fall to the floor, and to discover JHS in my subsequent reading. Interestingly orthostatic intolerance/POTS is described as a symptom of JHS, and possibily fibro. There is also an interesting article about relationship betw JHS and CFIDS. Again, it's game of trying to put this puzzle together.

    Second, interesting about mestinon. I have not heard of that, would be interested in learning more. I was prescribed florinef before being diagnosed (by TTT) with POTS, for low aldosterone, although I know my current docs question that decision. Anyway, I remain on that. I did have some improvement of fatigue with the florinef. Now I have been prescribed midodrine, which has not been succ for me becase my heart rate goes too low when I lie down (which your not supposed to do, but which I can't avoid due to such bad fatigue).

    Third, interesting theory about the dysautonomia being a predisposition. Thinking back, I think I probably have had a more mild form of POTS for a while, but it is hard to know. Definitely worse now though.
  6. sreges

    sreges Member

    In mentioning that POTS is a new name, I was relying on the wikipedia article (not necessarily a wise choice) that says that "POTS was first named and identified by Schondorf and Low in 1993." So when I was going to see Calkins, he wouldn't even have been familiar with the term when he diagnosed me with NMH. I've never fainted in my life (other than during the tilt table test), which is why my current doctor thinks that the POTS diagnosis is probably more accurate for me.

    In terms of predisposition, I don't know what to say. I only know that I was very healthy at one point in my life and then I got a severe viral infection that left me suddenly with a host of new problems that I never seemed to have before (exercise intolerance, allergies, POTS, high EBV titers, fatigue, brain fog, headaches, etc).

    That's odd that they tell you not to lie down when you take midodrine. I don't know if I'd like that. Lying down regularly is the only thing that helps me to get through the day. It took me a while to realize that even sitting up on a couch can be tiring. I often feel a strong brain fog when I'm sitting up that gets better when I lie down.

    I, for one, haven't had any joint issues (no joint pain, joint hypermobility, etc), but we all experience different combinations of problems.
    <br>[<i>This Message was Edited on 06/29/2008</i>]
  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I think many, many people have POTS or OI and don't know it. The changes are still in normal range. I have never had "low" blood pressure. But if you take mine standing, sitting and laying down, it will change in an abnormal way, but still in normal range.

    I never had problems with it, except occasionally dizzy when I stand. And if I stubbed my toe, and I didn't get my head down fast enough, I would faint.

    I ran track with it. I did gymnastics with it. I operated a business with it. None of those activities caused me to faint. I also had an accident where my car turned over. Still no symptoms. But, I have fainted from having blood drawn, falling on brick stairs in the rain and other sudden stressors.

    My point is, the only way I knew I had a problem is fainting every couple of years. Otherwise I was a very active, healthy, type A child and young adult.

    Four years ago, I had a reoccurring virus or multiple viruses one after another. Then the symptoms came gradually: fatigue, hot flashes, headaches, cognitive problems.

    Then two years ago, I plummeted and was bedridden.

    But I do believe the dysautonomia I have made my system unable to recover from the virus and the defective hypothalamus or pituitary, I don't know which one, was stressed to the point of going way off, causing the downward spiral of multiple systems.

    Tina
  8. wld285

    wld285 New Member

    Hi Sreges,
    From what you describe I guess I don't have this. I do have low BP most of the time, and high heartrate (all the time), especially high in the am. By evening it usually goes down some.

    90/60 is aroound my norm, sometimes can be lower or higher. The heartrate is what gives me the most problem.

    Thanks for posting this info.

    Linda
  9. tooks

    tooks Member

    Hi sreges and others,

    I too have been diagnosed with dyautonomia through the horrible tilt table test. And the chicken or the egg question is really hard to answer. I also have hypermobility, which is probably the condition that brings the dysautonomia as it is a congenital collagen disorder, the collagen in the veins is too stretchy, blood pools in the legs and abdomen because the veins balloon and the veins either don't get the message from the brain to constrict and push it back up to the brain and heart, or it isn't strong enough to constrict the veins enough.

    With the hypermobility I, as many, have mildly prolapsed heart valves, stretchy skin, unstable joints, a predisposition to arthritis and bone loss and probably fibromyalgia. I noticed "funny things" as a child and adolescent--huge silvery stretch marks, couldn't run or do aerobic exercise as much as other kids but didn't get the "911" type symptoms till I was about 37.

    At that time doctors knew nothing about it except they found the prolapses valves, so I limped along on my own, with ups and downs over the years, never finding a doctor who was interested. I had a big time relapse 3 years ago and had moved to a town where there was an autonomic specialist--hence tilt table. He has successfully controlled my symptoms with a combination of several very low dose drugs, though I am doing the methylation protocol now and hope to get off the drugs eventually.

    I also tried florinef--headaches, high BP, and midodrine--great for 2 weeks, then suddenly felt I was going to have a stroke. So those were out and we went to a combo of off-label drugs that mostly have a vasoconstricting effect and stuff like klonopin cause of some electrical irregularites in the heart (and know I know it protects the neurons!).

    For me there is probably an unfortunate genetic mix plus many of the usual stressors that set off symptoms. I am probably one of those who can't assimilate folic acid well, and possibly also B 12. So that, from birth, along with the hypermobility, may have started it all.

    It is interesting that when taking the Vitamin Diagnostics Methylation profile, it was clear that my methylation was not working well, so that is where I am concentrating now.

    By the way, I don't have the POTS variety, but some version of OI--BP drops but heart rate doesn't increase.

    Susan
  10. thefirstjustin

    thefirstjustin New Member

    My grandfather suffered with Autonomic Dysfunction and passed away Thursday. The last time he was home, we were taking him to the VA hospital in Memphis for a check up with his doctor, and he passed out 5 times before 10AM on the way to the hospital, and then passed out twice there. His health had been declining for a few years, but took a nose dive last year, and couldn't be left alone. My grandmother said the doctors told her they see many soldiers suffering from it. So my question is this, is there a connection between having seen combat and the frequency of Autonomic Dysfunction? Is anyone aware of such studies? I had never heard of this until my grandfather got it, and the fact many soldiers have it leads me to believe there's got to be some connection between the two. I know it's slightly off topic, so I'm sorry if this isn't in keeping with the thread, but any information would be a great help. I know there's nothing that can be done to bring him back, but I need to satisfy my own curiosity.&lt;BR&gt;
    &lt;BR&gt;
    Justin<br><br>[<i>This Message was Edited on 01/27/2012</i>]
  11. ulala

    ulala New Member

    and it's gotten worse over the years. One thing that seems to help for me is prednisone, but that is not an option. Drinking lots of water, compression stockings, claritin D (ephedrine) no carbohydrates, saline IV's all help me.&lt;BR&gt;
    &lt;BR&gt;
    I also have Factor V Leiden which just complicates the issue because it causes hyperviscosity. There is a drug in clinical trials, droxidopa, but it's not available inthe U.S. yet. I think it's currently available in Japan.&lt;BR&gt;
    &lt;BR&gt;
    Can anyone share what helps them? Thanks!
  12. joanierav

    joanierav Member

    i hope i got that right, my brain isnt working so well this early. hi ulala.&lt;BR&gt;
    &lt;BR&gt;
    i passed the tilt table test, so i didnt get the positive dx, but i cannot bear standing up for any length of time ie: waiting on lines etc. just extremely weak and feel like i may fall. i also never had a problem with low bp. but they gave me florinef anyway for the symtoms. which didnt help . and to complicate matters more, i have high bp. and take meds for it.&lt;BR&gt;
    &lt;BR&gt;
    ulala. potassium cl, K-dur also helps me.. and saline iv's. are you still on the gamma globulin infusions? im still on them 3 yrs now. monthly. doesnt help the cfs , fibro or other symtoms. but does keep the infections at bey. which that part is very good. &lt;BR&gt;
    &lt;BR&gt;
    hugs, joanie
  13. joanierav

    joanierav Member

    i hope i got that right, my brain isnt working so well this early. hi ulala.&lt;BR&gt;
    &lt;BR&gt;
    i passed the tilt table test, so i didnt get the positive dx, but i cannot bear standing up for any length of time ie: waiting on lines etc. just extremely weak and feel like i may fall. i also never had a problem with low bp. but they gave me florinef anyway for the symtoms. which didnt help . and to complicate matters more, i have high bp. and take meds for it.&lt;BR&gt;
    &lt;BR&gt;
    ulala. potassium cl, K-dur also helps me.. and saline iv's. are you still on the gamma globulin infusions? im still on them 3 yrs now. monthly. doesnt help the cfs , fibro or other symtoms. but does keep the infections at bey. which that part is very good. &lt;BR&gt;
    &lt;BR&gt;
    hugs, joanie
  14. This is actually a reply to the original poster, sreges, who wanted to start a discussion about &quot;dysautonomia&quot;, the inability to control autonomic functions of the body such as blood pressure and heart rate. It looks like the discussion got sidetracked, sincet there's a lot more to dysautonomia than NMH. It also involves regulation of temperature, respiration, digestion and other vital functions. There's a thorough list of symptoms at http://www.dinet.org/symptoms.htm. I have the dysautonomic symptoms of nausea, constipation, diarrhea. blurred or tunnel vision, insufficient sweating, intolerance to heat (possibly due to the body's inability to adjust the distension of the capillaries sufficiently to dissipate body heat), sensitivity to noise or light, and more. It seems to me that there is less discussion of the role that the hypothalamic-pituitary axis plays in CFS/ME than there used to be, which is unfortunate, since the HPA regulates autonomic functions. It would be interesting to hear more about other people's experience with all the other symptoms that may come along with dysautonomia, not just blood pressure problems (which of course I also have).
  15. TaniaF

    TaniaF Member

    @spiketheartist - I have many of the same symptoms as you describe. I always thought mine was from the mitral valve dysfunction but my Epstein Barr titers are high and I have fibro, arthritis and CFS (low IgG and neutropenia). All body functions seem out of wack and I feel fluish a lot without really being sick.&lt;BR&gt;
    &lt;BR&gt;
    The only thing I was given is Metoprolol (small dose) to ease the rapid heartrate and palpitation. Never did the tilt test. I also take potassium chloride because I get hypokalemia (low pottasium) if I don't supplement it. I lose it through the digestive track.&lt;BR&gt;
    &lt;BR&gt;
    I would love to hear more about this.&lt;BR&gt;
  16. simpsons

    simpsons Member

    pots has been studied by prof julia newton in uk, you can find her research on google and also on me research uk i believe&lt;BR&gt;
    &lt;BR&gt;
    julia gave me some good advice, to drink plenty of water. this is because we have low circulating blood volume, which doesn't help this problem.&lt;BR&gt;
    &lt;BR&gt;
    also after checing with my dr to add enough salt to my diet&lt;BR&gt;
    &lt;BR&gt;
    there is an idea that the mitochondria are not producing enough energy in the body and the heart, needs the most energy. &lt;BR&gt;
    &lt;BR&gt;
    if the heart doesn't get the energy it needs then it finds it hard to pump blood around the body, when standing it has to go into overdrive to pump uphill.&lt;BR&gt;
    &lt;BR&gt;
    julia newton says there are a lot of people feeling dizzy because they believe, salt is bad for you&lt;BR&gt;
    &lt;BR&gt;
    well it is bad for you in excess, BUT we need a certain amount of salt in our diets&lt;BR&gt;
    &lt;BR&gt;
    if your blood pressure is high this is not a good idea to add salt, so always check with dr first as always&lt;BR&gt;
    &lt;BR&gt;
    i found that this worked well and helped me&lt;BR&gt;
    &lt;BR&gt;
    i also have a good medical herbalist who used hawthorn, which strengthens the heart and helps with oxygen&lt;BR&gt;
    &lt;BR&gt;
    there was a post years ago on here re others who had tried hawthorn for heart problems and found it very useful&lt;BR&gt;
    &lt;BR&gt;
    as always you should check with a dr or medical herbalist before trying anything new. or do your research on a good site to check your suitability and for drug interactions&lt;BR&gt;
    &lt;BR&gt;
    though i have to agree that there is not enough work done on the endocrine system too. this is also an area you may find interesting to research&lt;BR&gt;
    &lt;BR&gt;
    love &lt;BR&gt;
    simps&lt;BR&gt;
    &lt;BR&gt;
    &lt;BR&gt;
    &lt;BR&gt;