Dysautonomia and other symptoms
river last edited by
@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.
Hi there, I understand our symptoms can vary with CFS. Just wondering how many of you experience persistent palpitations and what your Dr.s have said/explained about it? Thanks
@New2CFS Interesting question. I get palpitations on a regular basis, but I’ve never had a medical check regarding them.
Dot last edited by
I get palpitations when I have been upright too long. I presume because my blood pressure is falling (orthostatic intolerance) and my heart is beating fast to try and get some blood to my brain.
Realising this and managing it better means it (pretty well) doesn't happen any more, so fingers crossed yours is as easily managed. Best of luck.
Thanks for the replies. Anyone also get Raynaud’s/chilblains. My toe went black/purple this afternoon. I’m new to cfs and I’m finding the symptoms disconcerting to say the least. Vertigo too.
@New2CFS ME/CFS can involve all sorts of symptoms, but if you find your symptoms aren't common in/consistent with the core diagnostic guidelines ( https://www.emerge.org.au/diagnosis ) it might be an idea to make sure there's nothing else going on as well. Sadly, having ME/CFS doesn't stop us getting other things (although I hope you don't have anything else).
river last edited by
I'm not sure what you mean by palpitations but I experience a number of things that could fall into that category:
- Skipped/extra beats (confirmed benign with ECG)
- Sensation of heart pounding even when heart rate is normal
These all get worse when I've overdone it/am in PEM. I've had many ECGs and echocardiograms and apparently my heart is healthy. People with CFS have been shown to have reduced blood flow to the brain so I assume the increased heart rate might be the body's way of trying to compensate for that. I take medication to lower my heart rate a bit because it helps with conserving energy and allows me to sleep better (my heart will keep me awake/stop me from getting deep sleep otherwise) but I have to be careful not to take too much because when my heart rate drops below 60 I get incredibly nauseous and drowsy and experience strange neurological symptoms.
Bullet point 3 - the feeling of my heart pounding - is a pretty reliable indicator of me having overdone it cognitively. It also happens after a meal if I'm having trouble digesting food. It will stop me sleeping and unfortunately my heart meds make no difference as they only change my heart rate and the pounding feeling has nothing to do with my heart rate. Doesn't seem to be related to blood pressure either. I've never asked a doctor what causes it because they're usually uninterested in "subjective feelings" like this!
JustChilling last edited by
@Glimmer hi I was diagnosed MECFS then after reading lots about dysautonomia & POTS/OI I convinced my GP to:
- do a 24 hour ambulatory blood pressure test (easy to organise)
- 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
- 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.