ME related tremors, convulsions and psychogenic non-epileptic seizures
I'm new to the forum and as many would understand will have inconsistent access/ability to post here, but posting while I can.
A quick intro...
CFS 10+ years which first dropped me out of work as an IT officer in 2012. 2015-2018 I was an Auxillary Fire Fighter as it was only 6~10 hours per week but the adrenal overloads completely destroyed me and I had to quit. I'd managed something of an inconsistent home based income as a programmer but lost the cognitive capacity for that work.
Since 2018 I began to have complete neurological collapses. The first left me paralysed on the kitchen floor for about 20 minutes before enough function returned whereby I could drag myself to a phone and ring an ambulance. I had a few more such episodes over then following months before getting a handle on the warning signs after which I could manage it better.
For years I've also been having what I call 'coma crashes' where I will crash hard and be unconscious for 20~60 minutes before waking up with full body pins-and-needles.
Over 2019 I managed to recover some function enough to travel and trek India for 9 months. Not entirely plain sailing. I collapsed unconscious in dining hall once and came-to to realise I was being carried out to the street and dumped (literally). It took another 3 hours to recover enough to get home.
Oct-Nov of 2020 I thought I had it completely beaten by training myself in exlusive nasil-beathing, especially during exertion. For two whole months I was full power, could labour all day and was gaining weight and muscle. My reckoning is that there is an as yet unrecognised but fundamental role of the olfactory bulbs in measuring gas mix inhalation and exhalation for which it can prime and regulate the metabolism. But alas, the practice diminished in effectiveness over December (like everything else that seems to work at first) and I was back to severe crashing and never properly being able to recover.
By Easter 2021, I'd done some somatic trauma release work which improved my gut function a lot and I can now tolerate small amounts of sucrose again, an intolerance coincidental with the CFS onset.
The trauma release work, inspired by Polyvagal Theory, releases chronic Parasympathetic (nervous system) over-ride from trauma and allow Sympathetic NS activation and completion of the original, locked up trauma cycle. This presents physically as convulsion, trembling type behaviour of varying intensity and duration.
While I felt this did a lot of good, this year over all has otherwise been very gruelling and not only am I still crashing a lot, convulsive neurological episodes are plaguing me a lot more, particularly after forcing efforts, such as driving for an hour or more or anxiety triggering events. Just trying to relax will precipitate prolonged convulsive episodes. If it gets too bad I have found ways to manage it through full body tension, breath hold, relaxation cycles. Otherwise I just foster it through until the energy of it settles which is often over an hour.
My psychologist has suggested these are Psychogenic Non-Epileptic Seizures (PNES)....what-ever
The convulsions typically start in my abdomen gut and lower body presenting mostly in leg movement but is bad enough work up my body to full body convulsion. I'm always conscious and as said, have learnt to manage the more serious episodes and foster them through.
That these convulsions travel up the body might be of note as my crashes travel down
I was trailing various suppliments with indeterminate effect. Vit B's, C, zinc, Nicatinamide Mono-Nucleatide (NMN) and Resveratol (red-grape skin pigment). I've backed off the NMN as it's a metabolic support which I think is contributing to the convulsions. I still take the Resveritol which is a 'sirtuins' promoter that assists in DNA and mitocondria repair. Subjectively it feels it might be doing some good. The others weren't missing from my normal diet anyway so I've dropped them.
More general background....
ME/CFS runs in the family. My mother has battled it for >30 years which is why I didn't even bother trying to get help for myself for six year. My daughter got it when she was 11. She now 21.
I'd be interesting in hearing recovery stories from anyone with a family history. Most recoveries I hear of typically seem to have had post-viral fatigue
I live in a rural area of Far North Queensland and my experiences with trying to get support has been typically abysmal including all the usual medical and social stigmas and prejudice. After finally submitting to 'CBT', the psychologist, who was completely ignorant of ME/CFS, made gross breach of confidentiality back to the GP clinic regarding unrelated and highly sensitive family matters. When I discovered that a year later, under the eyes of a different GP and after receiving perceivably prejudiced treatment, I raise the breach with both the psychologist and GP clinic. They declared such reporting was required under the Medicare Mental Health Plan before black-listing me from further treatment at that clinic and sealing my 8 years of medical records with them.
I've since received the psychologists report through my lawyer, which was denied to me by both the psychologist and GP clinic. It is indeed full of gross mis-representations and derogatory personal and generalised remarks such as 'his lack of ability to take responsibility'. It also discusses private and sensitive matters of other family members who visit the same GP clinic.
This breach has been the trigger of severe and debilitating anxiety/crash attacks which can take 3 days to properly burn out before I can even begin to recover.
So after being dumped by that clinic, I've literally had to start this year with another from square one. Again with complete strangers, again trying to fight stigma and prejudice and yet my condition is now far worse. My lawyer at least knew a decent psychologist whom I'm now seeing. For what gain? I don't know. It was he who suggested I was having PNES and is supporting my effort to get a neurologist referral.
Financially I'm struggling by these past years on Jobseeker with medical certificates to exempt me from mutual obligation. I tried to apply for DSP but they rejected because I couldn't provide specialist medical evidence and the GP clinic were not amenable in helping me get any. Now Centrelink reject my Medical Certificates claiming it not to be a 'temporary condition' and that I must return to Mutual Obligation and Jobseeker activites. I've been waiting over 5 months for a call from their 'Employment Suitability Accessment Team' (ESAT), who obviously have no functional existence.
Anyway, I'm seeing some other online who've presented similar neurological/convulsive presentations but there is nothing mentioned in the diagnostics criteria, so I'm wondering how prevalent it is among us. Neither my mother nor daughter get it though my mother did have neuro-muscular damage in one eye when she first came down with CFS in the 80's
Thanks for reading
Welcome to the forum @Darryl , much sympathy for a very rough run. I'm afraid I'm a boring "post-viral fatigue" ME/CFSer, so can't comment on convulsions - it may be worth asking Emerge's infoline about it (they've got an email-in service as well, so talking isn't necessary). While it's unusual, I have heard of other people with ME/CFS experiencing convulsions - it sounds like a neurologist appointment may be a good idea, at the very least to cross-off any other potential causes, but also if they do any scans/tests that find abnormalities, these can be used to work around the stigma (my Spect CT scans aren't normal, which has been helpful in underlining to sceptical doctors that it's a physiological condition, although they're not abnormal in a way that's useful in terms of diagnosis or treatment).
In terms of recovery from ME/CFS, my understanding is that unfortunately at this stage it's statistically very unlikely - in the region of 5 per cent of people with the illness (and there's some question as to how 'recovered' some people are, although at the very least they've improved substantially - so it's still a good thing).
In terms of managing the illness, have you looked into pacing? There are a few things people try that help some people (low-dose naltrexone, PEA, high-dose B1, and legally-prescribed medicinal cannabis come to mind - I may have forgot some) - but so far nothing reliably helps everyone other than pacing (for Emerge's page on it, see https://www.emerge.org.au/treatment-and-management ).
Best of luck with everything, and take care as best you can. If it helps, please feel free to share your thoughts in other parts of the forum, or join in on Dot's August daily chat thread - https://community.emerge.org.au/topic/418/august-chat/4
Thanks @Daffy_Dave. I think Pacing comes naturally for anyone experienced enough with this condition. The problem is that basic life maintenance is not so amenable to Active Laziness. Less amenable are psych's that just say I 'lack ability to take responsibility'.
I'm not a drug taker, prescribed or otherwise. Even the supplements I've started this year are an experiment in great reluctance. I'll just keep working my own tools.
This year has seen a shift in physical activation, i.e the tremors. I'm just not sure if it's better or worse.
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Darryl what an awful lot you are dealing with, and it is so frustrating to have to try and work everything out without help from the medical profession. Not only that, some of what you have had to contend with is the opposite of help.
How amazing to have those two months last year when you felt so good. But so frustrating it didn't last. Sending best wishes as you try and sort out what you can do at the moment to at least make things stable. I like how you talk about fostering the things that help manage symptoms.
I'm one of the post viral ones, but hoping you get feedback from people who have a bigger genetic component. So much research to be done.
Thanks Dot. The extent of what I'm dealing with is a heck of a lot worse but too personal to share. Much of it though can be attributed to the past decade of compounding collapse of living standards that is so characteristic of this condition. I really only associate with three people now. My mum, who I'll often stay with to care for her and/or when I'm seriously ill, my wife (though separated) is still the most supportive person in my life, and my teenage son who also displays what I see as signs of CFS predisposition, particularly cognitive lock.
The two months of function last year was astounding. It wasn't just good that my body was working, it was working with a power that I've never actually felt before. It was like my whole body was properly tuned and turbo-charged and unlike anything I've experienced life long. It's not that I've ever been particularly unfit (I was doing 40km/day treks in the Himalayas in 2019) but never have I had the experience of power and strength building before. It was really quite novel and welcome.
It led me to realise a mystery from my young days when no matter how much I'd ride my bike, I could never increase power in my legs. I've never been able to put on weight before and I now recognise that as CFS predisposition.
To have had that 2 months has been the most promising experience yet that there's not only hope to get better but hope to get better than I've actually ever been before.
It's worth saying also that just prior to that two months, I'd been on a multi-month severe crash mostly bedbound and in deep physiological distress, the kind which lands your head in dangerous places seeking an 'out', which ever way that might be.
That 'out' came as a desperate prayer to 'soul' to "Back-off!". Within a day or two I'd come to hear of James Nestor's new book, "Breath. The New Science of a Lost Art". I can't recommend it highly enough for everyone.
Oxygenation, in my experience now, is a primary factor to this condition. Complimentary to that is correct CO2 and ph levels required for oxygen uptake, all which can be effected by breathing.
These past few years I've been focusing on learning as much physiology, metabolism, neuroscince, the works as I can. I'll never be a physician (or want to be) but the knowledge has been invaluable in getting a sense for how things work and what might be going wrong. Thanks Ninja Nerd Lectures on Youtube.
@Darryl Thankyou for sharing your story. Can’t respond to anymore at the moment. I’ve run out of body battery. Will get back to you sometime.
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@Darryl You are finding so many interesting things to consider and try. It is just so hard when we trial things and ideas on ourselves, without having multiples of us for comparison, and a control group. It is slow and hard, but it is hopeful that you found that energy before so maybe you can again.
And hopefully if another horrible crash starts you will recognise the signs that bit earlier and be able to stop everything to avoid the worst of it.
We need such incredible focus and patience and optimism and realism to make headway! But then, they are good skills to develop.
Best wishes for today.