Dysautonomia corner

  • If you have been diagnosed with dysautonomia along with your CFS, feel free to post here about that experience and how it affects your illness management 🙂

    If I remember correctly, dysautonomia is part of the ICC and CCC diagnostic criteria for ME/CFS, and naturally a lot of people with CFS get a diagnosis of dysautonomia at some point. Unfortunately, I've found that once you have a diagnosis other than CFS that could plausibly be used to explain most of your symptoms, doctors like to pretend the CFS doesn't exist.

    My personal experience leads me to believe that our dysautonomia is caused by the (still undiscovered) underlying disease process of CFS, and has a different mechanism to other forms of dysautonomia. I spent much of last year extremely sick because a capable and well-meaning doctor believed the results of a single tilt table test over my years of subjective experience, and prescribed a medication that would have been clearly contraindicated, had he listened in the first place.

    When specialists tell me they're out of their depth or can't make a diagnosis because my dysautonomia doesn't fit any of the patterns they have been trained to recognize, I want to scream at them "OF COURSE IT DOESN'T, BECAUSE I HAVE CFS!!" I can't wait for the day when we know enough about this illness to classify it as a disease instead of a syndrome, so that doctors will start seeing it for what it is instead of something to be replaced with a "better" diagnosis ASAP. 🙄

  • @river Hi there! Sorry to hear of your awful experience... I was dx with dysautonomia a decade or so after my ME diagnosis - but symptoms of course preceded the dx

    You may have seen this already, but sharing the link as it gives me some hope


  • @Trae great article, thanks for sharing! I hadn't seen it before. I really hope that something positive comes out of the covid research, for all of us.

  • I told about 6 different Doctors including 4 Specialists that I kept having to lie on the floor or I would faint before one Neurologist listened to me and said “tell me more about this”. Had a tilt table test and my BP dropped to 40 systolic. Finally, I could prove that I wasn’t exaggerating- “ That was a bit dramatic “ they said🤣🤣. Although on medication, I find dysautonomia one of my most debilitating symptoms. That is a great article and makes sense that the brain stem is involved.

  • @Loulou , I’m glad you finally crossed paths with a specialist who took the time to listen and then act. The common story so often shared of multiple medical professionals dismissing symptoms is incredibly frustrating. Patient centred care is often unfortunately hard to find.... and when you’re unwell being your own advocate is beyond exhausting

  • I’m replying under this topic as I’m experiencing much more constant lightheadedness and dizziness, and pain in head and neck. ?Brainstem. So I’m wondering if I should go to my GP but a bit concerned she may prescribe the wrong meds or tests. I’ve never had any tests for POTS or dysautonmia and I’m not on any medication. Always anxious about side effects. So does anyone have any thoughts or suggestions?

  • @Glimmer head and neck pain sounds more like a structural brain/spine problem than dysautonomia (have you read about cerebrospinal fluid leaks?)
    Does it feel like pressure in the base of your skull? I get that sometimes.

    Personally I cannot recommend getting a tilt table test. I feel that mine permanently harmed me, I was very very sick for a year afterwards and now have to be on a cocktail of meds that weren't necessary before. After my TTT I actually developed the symptoms the TTT was meant to diagnose, for the first time ever! That said, I haven't heard of anyone else having such an extreme reaction (although long term PEM seems to be common after the TTT).

  • @Glimmer Hi @Glimmer .... I can understand your anxiousness when experiencing the symptoms you describe and possible causes. It is certainly not a pleasant experience to have an increase and/or new symptoms appear whilst living with ME/CFS. Where does one begin to understand all of this .... Is it predominately the ME causing the symptoms or is it another illness in it's own right or is it likely closely associated to having ME ?... I have asked these questions so many times in the past and I was not given any conclusive definite answer. I get "maybe? ...we just don't know exactly ... research shows us that these symptoms can form part of the ME illness" ... So confusing and frustrating. However I present with these symptoms as you describe on a regular basis and it forms part of my diagnosis for ME, however in 2017, an MRI done after a seemingly TIA attack, revealed that I also have a glomus vagale tumour on the vagus nerve located high in the carotid body of my neck, near skull base. It intermittently can cause facial palsy, loss of speech and all of the above you mentioned. Ironically if I hadn't had the TIA, this tumour would never have been known. Prior to it the doctors records show a history of dizziness, vertigo, lightheaded, bradycardia, gut issues ...etc etc ... the list goes on... I suppose my point is never ignore any new or increased symptoms you may experience whilst living with ME ... I think a GP check on this is a good thing to do. It will in the least give you more piece of mind. It may rule out other possible causes as well... If my symptoms increase I always get checked as there are a mountain of other illnesses out there that we may as ME patients attribute to ME but it actually isn't ME related. Symptoms can overlap between illnesses/diseases and only a professional can ascertain what is what? I hope I'm not sounding pushy... I care very much about all of us with this illness ... a GP check wouldn't go astray and even though we go to them so many times , we still have to see them for our overall health. You may not require any medications and the cause can be found and treated with other treatments. I hope your symptoms subside or completely bugger off ... take care 🌸

  • Thanks @river. Yes I’ve heard of spinal fluid leaks. I’ve often wondered about that. And yes I get the pressure feeling at the base of the skull, plus the ache that runs down the back of my head and continues down the cervical spine, and across the shoulders. I’ve never liked the idea of the tilt table test. It certainly gave you a hard time, so I’ve taken note of that. Thankyou also @crashdummy. I hear what you’re saying. Yes we can’t always assume that new symptoms are CFS related. I’ve had light headedness and dizziness (I get head spin sitting still) on and off since the beginning but it’s now a regular thing. One thought I had is that I did some vagus nerve and neck exercises from Dr Google (yes I’m guilty of that) and that’s when things got worse. 😵💫. But I will consider a Dr’s appointment.

  • @Glimmer hi I was diagnosed MECFS then after reading lots about dysautonomia & POTS/OI I convinced my GP to:

    1. do a 24 hour ambulatory blood pressure test (easy to organise)
    2. seperately (not during 24 hour blood pressure test) do a NASA Lean Test at GP's with their nurse (make sure the GP/nurse fully understand instructions on how to do it before doing this test, you are not supposed to talk if possible during this test as that will raise your blood pressure a bit) here's a link to instructions, it's much easier than a tilt table test and minimal impact on you compared to tilt table https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf
    3. send all results to a specialist who knows about dysautonomia

    I did all this, and finally got to the specialist who diagnosed EDS-like Hypermobility Syndrome with secondary Orthostatic Intolerance (POTS) as well as confirming I had MECFS too. This is a much easier way for you and your GP and specialists to see what your blood pressure is doing. Once I got put onto the correct dose of meds (Midodrine, I couldn't tolerate Fludrocortisone) I found my neck and head aches are much reduced and less severe. I also am investigating structural issues, recently had a neck and brain MRI that showed foraminal stenosis in my spine (neck) and mild narrowing of spinal canal from bone spurs, so wonder if that is a possible CSF leak issue for me too, and now it's another slow referral period to see a neuro. I find getting the dizziness/lightheadedness under more control with Midodrine has been a game changer for me, I wouldn't be without it now. Previously I had tried increased hydration & salt etc but it really didn't help much, my BP drops too low and I needed medication (ended up in hospital in Feb this year with BP 100/5 and they didn't know how to help, yikes! Went home and slept, hassled small local rural hospital to forward BP readings to GP then hassled GP to forward them to specialist who finally raised my Midodrine dose to a higher dosage that works a treat. I find I have to chase up things with doctors a lot!

    Start the process, it's so much easier to function when you are on the right treatment for dysautonomia/blood pressure problems. It could be a CFS leak/Chiari/etc, but start with what your blood pressure is doing, that will get you on the right track with GP and finding specialist (Austin Hypertension Clinic is good!) Hope this helps.

  • @JustChilling Hi! Thanks for your advise and interest. I think I’ve developed another syndrome, called Doctor’s Reluctance Syndrome. (My idea for its name, sorry). After so long with CFS I think I’ve reached a point where I don’t want to even discuss it with my GP. I would actually feel uncomfortable about it. And she never asks. I can just see me asking my GP for the OI test and her giving me a strange look, and asking why etc. yes I know I could change my GP but I haven’t the energy to start again. And the idea of starting a new medication is a no go zone. I’m just sitting back waiting for the researchers to finally give us the answer, hopefully in my lifetime.

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