The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Stroke or stroke-like symptoms at onset of illness?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by GypsyGirl, Dec 13, 2015.

  1. GypsyGirl

    GypsyGirl

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    I was wondering if anyone had a stroke, or stroke-like symptoms, during the onset of ME/CFS (or a similar illness).

    This week I was organizing new records, and came across stroke symptoms by happenstance. My initial onset includes all the typical stroke symptoms: started with a couple hours of nausea and extreme tiredness/heavy exhaustion, progressed throughout the evening with my first ever episode of absolute vertigo (could not figure out where my body was in space), loss of vision but not of consciousness, numbness in legs, severe headache with visual issues (very sensitive to light, difficulty with peripheral vision). I had trouble speaking and being understood, and my hearing/understanding of words were affected - but only for a few minutes during the worst of the episode. The worst of lasted throughout the night, then I felt really out of it for about 4 days - just foggy and strange, with some vision/headache issues and that horrible lead-weight heavy feeling (I could NOT get up...had to scoot around the house on my butt).

    I never sought immediate medical attention at the time because I had no insurance. I didn't see a neurologist until about 10 months later (after being diagnosed with ME/CFS). I had a non-contrast MRI and the doc said it was fine.

    No one ever brought up stroke. I was 30, a healthy weight & lifestyle...fit none of the risk factors for stroke, so it's not surprising it was never brought up. But it was such a dramatic episode, and that's definitely the point where everything started to spiral downward.

    I've heard Lyme disease can mimic things like MS symptoms, and two doctors have told me they think I have Lyme (they don't treat it, but think I have it). Can Lyme mimic a stroke??

    ...so, yeah... all that just to ask if anyone had a similar experience. It was a sudden and dramatic start to illness and I haven't seen anyone describe their onset like this.

    ...anyone?

    Thanks for listening. :)

    **If there's a more appropriate category to post this, please let me know.
     
  2. funkyqueen

    funkyqueen Senior Member

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    Yes, there are "stroke -like" in some PWMEers
    I got sick with ME since my 26 years.old, and I am one of those whose vasculair is -strongly- affected. (25/35% of MEers) and I have done since the beginning of ME, 6 TIA.

    According to my Internist, who does not know about ME, but is compassionate and interested, it makes her think that the Internists calls "the MS strokes-likes" ...that MS sufferers also experience

    Especially be careful now to never take any medication containing vasoconstrictor, and see with your doctor if it is sensible to give you or not very regular infusions of saline.


     
    Last edited: Dec 20, 2015
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just a thought, bells palsy symptoms can look like a stroke but its usuall some infection effecting the nerves in the face etc.
     
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  4. halcyon

    halcyon Senior Member

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    Honestly they just sound more like ME symptoms than stroke symptoms. If you read some of the historical outbreak descriptions you will see most of your symptoms listed.
     
  5. Martial

    Martial Senior Member

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    Any condition affecting the brain can cause symptoms like this, Lyme could be worth investigating.
     
  6. Hip

    Hip Senior Member

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    @GypsyGirl
    Those symptoms you experienced during that episode might have been due to viral meningitis (symptom here), or viral encephalitis (symptoms here).

    Encephalitis can sometimes cause muscle weakness or paralysis, which could explain why you found it so hard to get up for a few days.

    Enteroviruses, which are linked to ME/CFS, can cause both meningitis and encephalitis.



    I had a similar episode myself, and I am reasonably sure mine was caused by the chronic enteroviral infection which had been ravaging my throat, nose and sinuses for around 18 months. I think this virus just entered my skull and infected my meninges (meningitis) and/or brain (encephalitis).

    In my case, the episode of infection lasted for around 20 minutes, and in that short time, caused considerable changes to my brain and mind. I lost a lot of the normal ability to recognize people, although this slowly returned after a few months; I lost my sense of smell (this took several years to return), and most upsetting for me (and strange), I lost a lot of my natural ability to empathetically tune into other's minds (I always valued this personality trait), and I have not really recovered this ability, even 10 years later.

    I also developed a condition of super-extreme anxiety as a result of my meningitis / encephalitis, so much so that I could not even think of visiting my doctor, until many months later, when the anxiety eased a little bit.
     
    Last edited: Feb 5, 2016
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  7. SickOfSickness

    SickOfSickness Senior Member

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    You may want look into a syndrome called MELAS. That stands for Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes.
     
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  8. JaimeS

    JaimeS Senior Member

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    Yup, happened to me too, almost exactly the same. Two episodes lasting eight hours each, with symptoms spiking every two hours or so... after ingesting a serotinergic substance both times.

    ?!?!?!

    Still get sensations of cold/numbness in the face when I am about to crash badly, even without that input though, especially around the orbit of the eyes.

    -J
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Migraine? This can cause symptoms like those described.

    I have had similar symptoms more recently (not during onset), first diagnosed as migraine, then after I was rushed to hospital in December 2015 the migraine diagnosis did not appear in my hospital notes, although the initial symptoms were the same as those diagnosed as migraine the previous year. I had a brain CT, which is not sensitive for encephalitis, but encephalitis was suspected at some stage and I was given aciclovir and ceftriaxone (an antibiotic).

    I have conflicting reports from scans, one saying that I had numerous old infarcts (signs of actual or 'silent' stroke) in the basal ganglia, another saying that I had none!

    Whatever it was, I have been OK since then - apart from M.E. I don't know whether the antiviral and/or antibiotic fixed it or whether the feverfew I started taking for presumed migraine did, but that isn't supposed to work for about 5 weeks.

    When I say I have been OK, that is not quite true - I have bad and worsening scalp dermatitis, possibly seborrheic dermatitis, which is associated with some basal ganglia disorders! I am going to try biotin for this, and hope it doesn't cause any adverse effects...:nervous:

    BTW @funkyqueen, stroke volume is the amount of blood pumped through the heart in a single beat. It's not directly associated with the brain disorder called stroke. Just mentioning this in case you or anyone else didn't know.
     
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    What was the serotonergic substance? My 'migraines' started a few months after I started 5-HTP, and feverfew - a migraine treatment - reduces serotonin.

    I am thinking that maybe I should stop taking 5-HTP. I keep nearly stopping it, then finding so many positive reports about it and no negative ones - that I don't.
     
  11. roller

    roller wiggle jiggle

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    i thought this whole mao-a stuff emerged from the high serotonin-issues in autists and some adhd.

    ever since the dinosaur mao-a it should be clear, thats a rather bad guy.

    i like to think back to those times... :)
    my world was still in its angles... pondering on neurotransmitters... hahaha...
     
  12. JaimeS

    JaimeS Senior Member

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    ....it was 5-HTP that caused such insane reactions. And there are a handful of studies that report 'overreaction'/serotonin-syndrome-like reactions in PWME... and some that report that the incidence of anti-serotonin antibodies is higher in PWME.

    After some thought, I believe that what we are experiencing might be more of a Bell's Palsy sort of thing: infection / inflammation of the facial nerves, since serotonin screws with immune function.

    [Edit: feverfew is a serotonin-blocker? I never knew that! It's quite the anti-infective, too...]

    -J
     
    Last edited: Feb 25, 2016
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I don't suppose you have any links to hand about serotonin problems in M.E./immunity?

    BTW I had Bell's Palsy at age 5, after chickenpox, I think. Left me permanently disfigured. At first I couldn't close one eye, and slept with it open, which must have been freaky for caregivers!

    I think I really should stop 5-HTP. But you said that your reactions came quickly? Maybe I did have some earlier but didn't make the connection. I will have to check my health diaries.

    Also BTW you mentioned facial numbness - I have been getting a weird numbness in my scalp after washing my hair, as the scalp dermatitis worsens, but it may just be a misperception because my (remaining/thinning) hair seems to be sticking to the scalp after washing. It's as though I have lost an 'undercoat' of hair, like animals have!
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Sorry - you've lost me. MAO is monoamine oxidase, yes?
     
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  15. JaimeS

    JaimeS Senior Member

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    I doooo. But it might take me a minute to find them. I'll get back to you. :)

    Hmm. My (really short) research into the medical literature told me that permanent effects were rare. My first encounter with 5-HTP left me with a slump on the right side of my face dramatic enough that I felt self-conscious if I didn't correct for it with makeup. I have a shot I took for medical purposes with the right side of my upper face slumping... one brow distinctly a few centimeters lower than the other.

    I later concluded I was having lots of 'mini' episodes, because my face would feel tingly during really bad eps and the slumpy thing would happen again; but never again lasting for so long (a few months the first time). I thought of it as a 'stroke-like' episode, as stated by the OP. But later, given its transient nature, I began to re-frame it as Bell's Palsy, a temporary inflammation of the facial nerves often due to infection, that typically resolves as infection improves.

    Occurred at my second dose, but repeated exposure to serotinergic substances produced the same symptoms. I think it just took longer for serotonin to build up in the system. I also have a SNP that slows serotonin breakdown, so it remains in my system longer.

    -J
     
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  16. JaimeS

    JaimeS Senior Member

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    @MeSci --

    We've... we've had this exact conversation. Talk about brain fog! (It's okay, we had it last August!)

    It was in a private forum, though, so I will reproduce it here for anyone who is interested in why some PWME react oddly to SSRIs or serotonin-like compounds.


    I've found out additional information since then, as well. Serotonin directly stimulates the release of cortisol (Lefebvre et al, 1992) which is an immuosuppressant. If our immune systems are already depressed, our bodies may attempt to maintain the lowest effective level of cortisol that gives us enough energy to live without impeding the action of a beleaguered immune system.

    This may be the most direct, Occam's Razor reasoning for why serotonin seemed to produce such a response: it excited cortisol and depressed the immune system? However, my reaction was more excitatory (I ran a fever, my muscles twitched) than the reaction I get if I attempt to take cortisol (I crash).

    I've edited this response a bunch of times. It's hard to find good evidence that serotonin directly affects cortisol or vice-versa; the studies seem to be relatively tiny, or involve very specific patient populations. The one I've included above is in vitro, but seems otherwise sound. If anyone finds a more modern article that states this to be the case, please let me know.

    -J
     
    Last edited: Feb 25, 2016
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    As a disfigured person I have read a lot on facial paralysis (it has blighted my life, especially childhood and young adulthood), and I know that it usually recovers, but it may be that the treatment they gave me was what made mine permanent. The first of many many medical blunders that I have suffered from?
    What did you take it for? I took mine for persistent low mood after a sad event, and it did help after a couple of weeks. The reason for taking it may make a difference to how it affects people.
     
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Oh dear. I can't remember at all. :(
    Thank you very much for posting all those links.

    I have tended to be under the impression that more cortisol would benefit me, and many other pwME, as we have too little, and could do with a bit of immunosuppression.

    Don't you usually get muscle twitching? That is a common symptom for me, but I think I have two different kinds - the 'nice' twitching in calf muscles when they are recovering from exertion, and the non-nice twitching in my face, that I tend to assume is due to electrolyte depletion.

    I am going to come off 5-HTP very slowly, partly to avoid any possible withdrawal effects (I can't find any info on these or what is the best way to come off 5-HTP), and partly to avoid too much confounding when I assess the effects of a new supplement I am going to start soon.

    I feel OK after one night without it. I have only been taking 100 mg each evening.
     
  19. JaimeS

    JaimeS Senior Member

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    What treatment did they use? That's awful.

    I took it on the advice of my original GP. I'm normally a lot more circumspect with my wording, but he really was a moron. Worse, he was the sort of moron who thought that being a doctor made him automatically correct. We have since caught him in multiple other errors (my whole family went to him at one point; now, no one does.)

    Partially, I was thinking, "this jerk. I'll follow his advice and I guarantee my symptoms won't go away!"

    Then I was thinking, "If depression is really what's wrong, and this fixes it... oh please let this have been some kind of weird, paralysis-like depression!" LOL -- it was when my illness was new, and I hadn't yet had anything that could be recognized as overt PEM. I was terrified and had no earthly idea what was going on.

    The first dose I did feel a little more cheerful and focused, though nothing happened to my other symptoms. The second dose... BOOM.

    So why did I take it? The answer is 'psychobabble'.

    Mine is typically low-normal. I don't have good cortisol response, so my cortisol might be abnormally low after a seriously stressful event. However, it is normal otherwise. And attempts to supplement have been as disastrous as serotonin was.

    Finally, my immune system is in the weird pattern of both depressed and hyper-excited. My IgA and some IgG subclasses are low, but IgE is sky-high, possibly to compensate. We were discussing that idea here, which preceded my blog post antibiotics and immunoglobulins here. Point is, I don't do well with anything that suppresses my immune system further and in fact I take immune-activating supplements (such as lactoferrin).

    I don't get muscle twitching as an everyday symptom, no. If I am getting it, I need to take a TN Healthy Feet & Nerves. When I do, that stops. I take it every day, twice a day, so I don't typically experience that symptom anymore unless I'm crashing. Regarding the face, I get tingling, numbness, and a cold feeling sometimes, but seldom twitches.

    Do go down REALLY slowly, okay? At least SSRIs are notorious for their creepy withdrawal side effects.

    -J
     
    Last edited: Feb 26, 2016
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    It was some kind of electrical stimulation, and possibly some suction. I hated it and I think I asked for it to be stopped, and as it didn't seem to be helping it was stopped.
    Yes - the plan is to take one every 2 days for 2 weeks, then one every 3 days, etc.
     
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