arrow31 Comments
  1. Helle Nielsen
    Oct 31 - 2:53 pm

    Thank you for a fine article on one of my favorite topics. I have collected some references here:
    “Autoimmune Autonomic Neuropathy”
    http://www.followmeindenmark.blogspot.dk/2013/09/autoimmune-autonomic-neuropathy_23.html

    • Cort Johnson
      Oct 31 - 6:01 pm

      Thanks, Helle – there’s so much to explore in this topic.

      I noticed that you highlighted this study – http://www.ncbi.nlm.nih.gov/pubmed/17352367 – in that page, which suggests that about nerve damage appears to be present in about half of the POTS patients seen at the Mayo clinic over a considerable amount of time, and that a substantial percentage of that may be due to autoimmune processes – very similar, it sounds, Lauren’s experience.

  2. Issie
    Oct 31 - 4:03 pm

    POTS is so complex, complicated and difficult. As a person that has had POTS most of my life – trying to find “bandaids” to help with our issues is difficult. The more awareness that we can get out there —the better.

    I personally question a lot of the “traditional treatments” used for most POTS people. But, at least there is more awareness happening and some other doctors are looking into “cause” and “treatment” for us. I’m having good success with a diet change and addressing protozoa. That seems to be helping my POTS more than anything else I’ve done over the years. Of course, this treatment addresses the immune system. That could be the key to all of our issues —autoimmune dysfunction.

    Thanks for trying to get our stories out there. As the more verbal we are, the louder we shoot —someone that maybe can help —-might hear us and be able to put their energies into uncovering more solutions for us.

    Issie

    • Cort Johnson
      Nov 01 - 11:26 am

      Given all the ways POTS and autonomic nervous system problems – including small fiber neuropathy – can be caused, and the many different things they throw at it to fix it – I’m not surprised to find new treatment possibilities show up – and when they show up – particularly in a disease like this which is not well studied – they often come out of the offices of doctors who are trying new things. They’re the ones that really doing the experimenting.

      • Issie
        Nov 01 - 12:59 pm

        It is really exciting to find these “pioneer type” doctors that are willing to look further than the obvious and find things that we may not suspect and the treatments help us in other ways. Those type of doctors are hard to find and also take a lot of abuse from their peers and some patients that want to disagree with their treatments. But, the “proof is in the pudding” – so to speak. If it works —then there is no denying that.

        I’ve been pretty verbal about what I’m doing and how it’s affecting me. It’s really interesting to me how people will criticize something when it is different than what is considered the “norm”. I’ve taken a lot of criticism just from telling my experience – sad to think what the doctors themselves hear. You have to admire someone who sticks to their guns under such adversity.

        It takes someone with another idea and then research to either prove or disprove something. And then it takes time for others to get on board with something that is new. Todays ideas are tomorrows facts.

        Issie

  3. Issie
    Oct 31 - 6:32 pm

    Ha! The louder we shout – not shoot. LOL!

    Just a bit of encouragement to those that have POTS. I’m in a flare with my back right now. Got sent to a Spinal Rehab Doctor today. Guess what? He HAD POTS. Was DX’d at Vandy and was so bad he had to move in with family to care for him. He was nearly incapacitated. He started going to my Doc. and treating the protozoa with low dose antibiotics and started the low-fat, whole food vegan diet. He has been doing this for 3 years now. He says he would now say he HAD POTS. At times he is dizzy if he stands too fast, but no longer has the tachycardia and things that go along with POTS. He encouraged me to stick with my diet and the protocol I’m on. He really thinks our doc’s ideas and protocol is the right way for us to go. It addresses the immune system, and targets the biofilm and pathogens that live in it. It was a nice surprise to meet him and to see that someone can get over POTS. At least he feels that he no longer has it. He speaks of it in past tense. He had to stop practicing as a doctor when he got it and now is very functional in his life.

    It has definitely been the best thing I’ve done. I’ve tried all the meds and assistance (compression hose, ab binders, raising bed etc.) that the doctors tell us to do. But, this is the first thing that is really making me see improvements. I’ve been on this for 8 months now. Since I do have autoimmune things going on and lots of other things with MCAS and EDS connected —it will take time. It’s not a quick fix. But, I intend to stick with it. It’s too much of a difference to change anything. To think —–DIET may be our key. And addressing autoimmune and inflammation issues is a big part of that.

    Issie

    • Cort Johnson
      Nov 01 - 11:28 am

      Glad to hear that. How are your lab readings doing? Is the doctor checking autoimmune/immune factors. Any change there.

      • Issie
        Nov 01 - 12:02 pm

        All my labs are looking better. I was in Chronic Kidney Disease stage 3 and am now almost in stage 1. My blood sugar readings are from pre-diabetes to completely normal. I got my Vit D levels to finally come up. All my lab numbers are greatly improved.

        As for autoimmune, still having issues there. So, waiting for that to get better. I was told it would take time. Not something that will happen over night.

        But, seeing the labs and the science showing improvement and just knowing that I’m functioning so much better —to me, is proof enough. I was in a wheelchair for over 6 months and could barely function and now I’m preparing to go on vacation to Hawaii for a couple of weeks.

        Issie

  4. Vanessa
    Oct 31 - 8:48 pm

    Can anyone please tell me what sort of specialist Dr one would see to investigate Dysautonomia? I live in New Zealand and have had type 1 Diabetes for 30 years and my Endocrinologist doesn’t even believe there is such a thing as CFS and simply dismisses my requests to attempt to find ANY diagnosis for me by saying everything is attributed to Diabetes and to just accept at 44 years of age this is my lt. Not so! Any advice would be appreciated thank you.

    • Lauren
      Nov 01 - 11:24 am

      Dear Vanessa,

      Diabetes is the most common cause of autonomic nerve damage, and thus, is the most common cause of dysautonomia symptoms.

      If you have diabetes and symptoms that sound like dysautonomia, there is a good chance that your diabetes has damaged your autonomic nerve fibers. Ask your diabetes specialist about diabetic autonomic neuropathy. There are several ways to test for it – some are mentioned in the article.

      There is a cardiologist interested in dysautonomia located in Christ Church, NZ listed on the Dysautonomia International map: http://www.dysautonomiainternational.org/map.php

      If you can travel, the Baker IDI in Melbourne, Australia is one of the world’s leading diabetes and dysautonomia research centers.

      There are symptomatic meds that may help with dysautonomia symptoms, but if diabetes is causing it, the best way to treat it is to carefully control your diabetes as best as possible.

      Good luck!

      Lauren Stiles
      Dysautonomia International

      • Vanessa
        Nov 01 - 11:01 pm

        Thank you Lauren for your prompt reply which I will follow up :)

  5. susan kruger
    Nov 01 - 1:11 am

    i had the same problem. was in hospital for about a week. kidney failure and a unknown virus that cause the problem. since then i’m tired all day long, cant eat and feel sick te the whole time.and the docters – well, not very helpfull!!!!

  6. Cort Johnson
    Nov 01 - 11:37 am

    By the way dysautonomia was incorrectly spelled in several of the headings. That was my mistake – I added some headings – not Lauren’s.

  7. POTSNJ
    Nov 01 - 2:30 pm

    Thank you for this excellent overview of dysautonomia, Lauren!

    -N

  8. Diana Taylor
    Nov 01 - 9:28 pm

    What about the Driscoll theory on YouTube?

    Mast cells? Interesting stuff

    • Cort Johnson
      Nov 02 - 12:21 pm

      Sounds like a good blog Diana….Let me know if you’re interested in doing one and informing us. (Mast cells are nothing if not interesting :))

    • Issie
      Nov 02 - 1:14 pm

      Mast cell problems do seem to play a big part with some of us. Interesting enough when I added GastroCrom to my H1 and H2 it greatly improved my POTS symptoms.

      I tried the protocol that Dr. Driscol recommended with Diamox. I tried this before going on my diet. This made me sooooooo SICK. It was absolutely the wrong thing for me to do. Not only is Diamox a sulfa drug and I have a CBS mutation, but it is really hard on your kidneys and I have CKD. Most of the friends of mine that have tried this —have all stopped it. It made us all worse. I know some seem to be getting help from it. But, this is really hard on your body. We are already dehydrated and this seemed to make things worse for me.

      I appreciate the “Theory”, but don’t think it explains everything. There probably is an issue with CCVSI – but for different reasons than is proposed by this “theory”. (Just my opinion – not trying to start an argument.)

      Issie

  9. Renee Lichtenhan
    Nov 02 - 5:15 am

    This is a very well written article. I was surprised and disappointed that biofeedback was not mentioned as a form of treatment. My daughter suffered for five months, homebound and wheelchair-bound, with POTS. Biofeedback is what normalized the function of her ANS and gave her her life back!! She has been one year symptom free. Stories like hers are very, very typical at the POTS treatment center in Dallas, TX. Biofeedback saved my daughter. Others should know this, especially Dysautonomia experts.

    • Cort Johnson
      Nov 02 - 12:20 pm

      Glad to hear your daughter improved so much. I haven’t heard of biofeedback being used either, but dysautonomia can arise in some many ways I’m not surprised it can – in different people – be attacked in different ways. I have heard that the autonomic nervous system is more amenable to control than other systems; maybe she was able to calm down the system enough to allow it to reset?

  10. Helena Mallett
    Nov 02 - 8:04 am

    Wow!

    I have all these symptoms. M.E. is my primary diagnosis. Following your blog with interest … thanks!

  11. Neil
    Nov 02 - 9:07 am

    Haiku: “Although normally – dysautonomia is – unseen, its not rare”

    • Cort Johnson
      Nov 02 - 12:16 pm

      A dysautonomia Haiku – I love it :)

  12. DR FRANCISCO VICTORIA
    Nov 05 - 5:58 am

    CORT , SEGUIDORES DE ESTE SITIO EN TRATAMIENTO HAY ALGUNAS CITAS EN LA LITERATURA MEDICA QUE 600 MGR DE ACIDO ALFALIPOICO CADA 24 HR Y COMPLEJO B
    MEJORA LA DISAUTONOMIA Y EN MI CASO MEJORA ADEMAS MI FCS

  13. Stephen in Cleveland
    Nov 07 - 1:53 pm

    Well I wish that I had stumbled across this post earlier, because I would have been interested in writing something for Dysautonomia Awareness Month. I don’t recall seeing anything else written about it, but I guess that probably wouldn’t come as too much of a shock to you, especially when trying to compete with “Pinktober” and every company that wants to show it supports breast cancer awareness if you buy their products. It also seems like diagnosing dysautonomia is nearly as difficult as diagnosing fibromyalgia, which would certainly support that there are many unconfirmed cases out there.

  14. […] Dysautonomia 101 From Lauren Stiles For Chronic Fatigue Syndrome and Fibromyalgia – Health Ris… […]

  15. Joan Price
    Nov 12 - 9:00 am

    Great article! I may be wrong but isn’t dysautonomia diagnosed by an ANS test? I am pretty sure when my cousin was tested the doctored ordered an ANS test to see if there was an imbalance in his body. Any input?

    • Lauren
      Nov 12 - 10:57 am

      Hi Joan,

      I am pretty familiar with all of the testing equipment used by the autonomic researchers and clinicians, and I have never heard of an “ANS test.”

      I think, perhaps, you are referring to the ANSAR test? If so, I can tell you that most of the physicians who specialize in autonomic disorders do not consider that to be a credible or diagnostically useful test. There are plenty of doctors who will order it though. If that is the test a doctor is relying on to diagnose or rule out an autonomic disorder, I would find a doctor who has more expertise in how to diagnose autonomic disorders. You can find good autonomic experts here: http://www.dysautonomiainternational.org/map.php

      In my own experience, before I was properly diagnosed, I saw a general neurologist who ordered an ANSAR test for me. The results came back “normal,” yet within a minute or two of completing the test, I passed out cold on the floor in the lab. Clearly, not normal. Two years later I found a neurologist that actually specialized in diagnosing and treating autonomic disorders. He used a tilt table test, QSART, Valsalva and other autonomic function tests, along with small fiber nerve density skin biopsies, to accurately determine what form of dysautonomia I had.

      You can find out more info about clinical autonomic testing here:
      https://www.aan.com/Guidelines/Home/GetGuidelineContent/39

      Sincerely,
      Lauren

  16. Jessie
    Dec 29 - 7:05 am

    HI all,
    Glad to stumble on this website. I have a vague diagnosis of dysautonomia, ha, but clearly I need a new specialist. Any suggestions for firstly good specialists in Melbourne, and secondly, what sort of specialists should I be seeing? I have a cardiologist who has spent the last year doing general cardio workups which are not surprisingly fine (I am a fit 30 year old). I don’t ‘fit’ POTS (postural HYPERtension from 115/70 to 220/190, returning to normal in a minute or two, no rise in pulse rate, no fainting just awful headache and loss of vision) so he has no idea what it could be. I also have tachicardia only during deep sleep (waking up with heart rate 200+ bpm). I have no idea what to do next but I have been fobbed off with this “some sort of dysautonomia” diagnosis. I have had to quit my job and I don’t have private health insurance, so I am on a health care card. Any suggestions? Neurologist next, or try a different cardiologist? Endocronologist? I’m so confused. . .

    • Cort Johnson
      Dec 29 - 11:43 am

      Hi Jessie. You might want to try to get in touch with Lauren at Dysautonomia International. She might have some good ideas for you. Good luck!

    • Lauren
      Dec 29 - 12:11 pm

      Hi Jessie,

      Try getting in to see Murray Esler at Baker IDI. He’s a cardiologist, but has substantial autonomic expertise and can probably perform tests to pinpoint more accurately what kind of dysautonomia you have. You can also try finding an autonomic neurologist. Esler’s office may be able to recommend someone.

      You also might want check in with Michele from the LivingWithBob(Dysautonomia) blog. She’s a lovely Aussie who has a great neurologist that has finally uncovered the root cause of her dysautonomia.

      Regards,
      Lauren

  17. Tanya Selth
    Mar 25 - 10:43 pm

    Hi Lauren.

    I have severe POTS (my heart rate can increase up to 65 beats per minute on standing). Those who have hyperadrenalic kind of POTS like I have get high BP on standing (mine can jump from 130 to 170 in one minute of standing) and if bad enough also may need saline IVs.

    Ive had to have saline IVs in hospital when my POTS is very bad and my BP went then up to 180 over something due to it (my LOWER reading can get up to almost 140 when up on feet.. severe hypertension). Dr David Bell has given saline IVs to some of his POTS patients who have high BP flare to get the BP down. This can quickly help me too and without this I will suffer from a bad POTS flare up no matter what the trigger (heat or being upright too long) for days.

    Last time I had to be ambulanced to hospital due to the POTS resting heart rate had gone up over 140/150, BP 180 something..and a major collapse and I ended up dehydrated to.. I do not hold my fluid well and what I drink with the POTS just seems to be peed out, thou Florinef does help some. My blood tests came back showing my kidneys were in trouble… I was given 2 bags of saline to try to boost my blood volume, get my BP and heart rate down and to help me over the crash I had with the POTS. (It had been a hot day and my body can not handle getting too warm, I can get sick due to this even at temperatures normal people find pleasant but this day was a bad one).

    In this article you said.
    “In urgent situations, IV saline can be used to help increase blood pressure and improve hemodynamics”

    .. anyway Im just pointing out that its also used in some cases of POTS when BP goes up very high due to the POTS, to help get the BP DOWN! and I can say that IV works very well. I wish that was noted in this article too as I do come across quite a few others with ME who do have the orthostatic hypertension kind of dysautonomia with the POTS.

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