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Pseudobulbar affect anyone?

Discussion in 'Neurological/Cognitive: Brain Fog, Concentration' started by Justy, Dec 13, 2017.

  1. Justy

    Justy Senior Member (Voting Rights)

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    two years ago i had my first episode of uncontrollable laughing. It was incredibly embarrassing. I was playing a game with grown up children and found the thing i had to say disproportionately funny and couldn't stop laughing.

    I had to leave the room and was gasping for breath. It was like being tortured and i totally lost control of myself. It was really horrible. Afterwards everyone begged me to show them what had been so funny and when i showed them, it just wasn't funny at all, even to me.

    A few months later it happened again and it was actually frightening and has made me try very hard to control myself and not laugh too much since then (it causes PEM anyway so best avoided for me).

    Then last year i went to see a film (i know, lucky right?). The ending of the film was quite sad, people were sniffling all around, even my son had a tear in his eye. I didn't just cry, i felt absolutely devastated and started sobbing uncontrollably in the cinema. I literally felt like i could just throw myself on the floor and sob for ever. I had to go to the disabled toilet to try and get a grip, but then couldn't stop sobbing and the horrible feeling of being tortured came back.

    A couple of months after this the crying thing happened again after a very minor disagreement with my husband. I was so beside myself that i honestly wondered if i needed an ambulance. I know that sounds crazy, but i couldn't stop crying hysterically, however hard i tried and it was very frightening.

    I've just discovered Pseudobulbar affect - apparently people with MS and ALS can have it, or stroke victims and it sounds like what i experienced, although mine does need a trigger, the emotion is then out of all proportion to that trigger and in most cases i certainly haven't wanted to laugh or cry that much.

    Does anyone else with M.E think they might have this? if so then it must point to some kind of neurological damage surely? despite having had seizure like episodes, severe cognitive issues etc i've never seen a neurologist.

    https://www.pbainfo.org/about-pba
     
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  2. erin

    erin Senior Member (Voting Rights)

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    Maybe not as drastic as yours @Justy, though, I seemed to be stuck in an "emotion" and I had to think hard and control my self for the emotion has to go away. It lingers for longer than it's suppose to be. But the emotion is never strong. Actually, I seemed to be flat most of the time and when there is emotion it does not shift easily. All these can create embarrassing situations in presence of others.
     
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  3. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    @Justy , in the link you provided emotional lability is given as an alternative name for pba, although it is noted that this may not be an accurate description.

    However, emotional lability can be a symptom of ME (off the top of my head, I think CCC mentions it) and it's definitely something that has affected me. At one point, I would cry when I wasn't particularly upset but was under pressure. Now I am more likely not to be able to stop laughing.
     
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  4. Justy

    Justy Senior Member (Voting Rights)

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    i always saw emotional lability more as a seesawing of emotions, being perhaps overly emotional and crying easily etc. This is more a severe uncontrollable hysterical emotion out of all proportion to the precipitating event,
     
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  5. Wonko

    Wonko Senior Member (Voting Rights)

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    I have a tendency to laugh or giggle when hit by an unprocessable amount of pain, if that's any help.

    A "large" 51 year old guy, who can't do sod all but stay in a crumpled heap giggling, I've been told it's quite off putting, to others :) (to me it's just life)

    Yes I have a white cat, but I'm short a few minions to be a supervillain ;)

    The way I look at it is, I only have a certain amount of resources to go around, if these are more urgently required elsewhere, there's zip for emotional control, so provided outbursts aren't damaging I don't bother with controlling them, the resources i would use to do so, can be better used.

    The fact that this approach also entertains the cat......bonus lol

    (I don't get out a lot ;))

    added - emotional liability, to me, is......an inability to prevent the showing of socially inappropriate emotional states - regardless or if these states have any actual validity (i.e. are appropriate for the situation e.g. echoey places "disturb" me, cause a certain type of overload, if I stay in them I will get emotional, angry, frustration and eventually probably paranoid - so if I can, I don't stay in them any longer than necessary - with me they cause "emotional liability", it's a known flaw, so I work around it)
     
    Last edited: Dec 13, 2017
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  6. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    So sorry @Justy.

    That sounds horrible.
     
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  7. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    Me too @Justy another thing we have in common! My physical emotional responses are way out of proportion to what I feel.
    I'm sorry I haven't PMed yet, I will on Friday - dentist tomorrow, broke a tooth on a stubborn almond :jimlad: I look like a pirate.
     
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  8. Hip

    Hip Senior Member (Voting Rights)

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    You might be interested in an OTC treatment for the pseudobulbar affect (emotional lability): dextromethorphan (DXM), which you can get over the counter in certain cough mixtures and cough lozenges. DXM is an FDA approved treatment for the pseudobulbar affect.

    I wonder if DXM might be useful to take when you are actually experiencing a pseudobulbar affect episode?


    I have the one of the other emotional conditions of ME/CFS: blunted affect (blunted emotions), in which emotional responses to normal events are weak, thereby making life seem a little "dry". I no longer listen to music because of this, as without having an emotional response, music seems very flat to me.

    And like I think many ME/CFS patients, I have the hypersensitivity to emotional overload symptom. All of these are listed in the Canadian consensus criteria.

    I suspect that the hypothalamus dysfunction of ME/CFS may be involved in these various ME/CFS emotional symptoms, since the hypothalamus is a main processing area for emotional responses. Of course, those halfwit psychiatrists from the biopsychosocial school probably think such emotional symptoms are evidence of their erroneous theories about psychological causes of ME/CFS; but that's nonsense, as the emotion dysfunction of ME/CFS I think is underpinned by the brain being physically affected by this physical disease.

    The only thing that I found consistently helps my blunted affect is high doses of allicin (180 mg x 6 daily or more), but I find that's a bit too expensive to use regularly (that dose works out to around £1.20 a day, just for the luxury of having some emotions).
     
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  9. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Emotional out of proportion but not hysterical

    DIY Sos or even crappy day time tV can get me going.
    Although "doctors" makes me want to cry for the pitiful acting and shallow story lines?n I think that's a different emotion.

    Reading bedtime stories sometimes catches me out ..reading Harry Potter ATM ..just cough and try and move on when a giant spider dies or something ridiculous ...hoping no one notices

    I think this is mild compared to what your are describing @Justy
     
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  10. Rosie

    Rosie Senior Member (Voting Rights)

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    @Justy I think so. I have experienced the excessive laughter, crying, high emotions.

    I don't like remembering my severe years and the anger, shock, despair, terror (of severe physical symptoms I was experiencing). The heightened nervous system made all these emotions felt much more extremely than is normal. That was my experience.

    Just as the over-sensitivity to noise that is felt, which makes noise so painful for us, so was all those emotions felt at abnormally high levels. You go to the edge of each emotion.


    I experienced the hysterical laughter a couple of years ago when my temperature regulation became scarily out of control. I had severe burning of skin (feeling like I had sunburn) and breaking out in sweating from head to toe then severe chills. Amidst all these distressing symptoms I would break out in hysterical laughter at the slightest thing.
     
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  11. Sue

    Sue Established Member (Voting Rights)

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    Justy I am very sorry . This can be horrible and is very Embarrassing. You are not alone.
    I had similar episodes. I don’t think mine were true pseudobular effect but I would get uncontrollable sobbing and bang my head on the kitchen counters. I was not upset about anything. These would come on usually in the morning with no other trigger.
    I am now calm and fine again and no longer have there episodes.

    My quick fix was to drink Alka Seltzer Gold or to put a teaspoonful of baking soda in a glass of about 8 ounces of water. ( my cfs doctor Dr Podell told me this at the time ) This would get my brain calm in 10 minutes. I live in NJ . In my case it was something I was being exposed to in my home we moved and started over with new possessions and I no longer get these episodes.
     
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  12. Justy

    Justy Senior Member (Voting Rights)

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    Thank you, and yes it is horrible.
     
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  13. Justy

    Justy Senior Member (Voting Rights)

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    Haha - i thought you WERE a pirate already!
    Hope the dentist goes OK.
     
  14. Justy

    Justy Senior Member (Voting Rights)

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    Thanks for the suggestion, sadly MCAS stops me from trying anything new.

    Sorry to hear this, i didnt know this was common in PWME. Mine emotions are quite the opposite.
     
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  15. Justy

    Justy Senior Member (Voting Rights)

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    Yes, i also recognise this. This is me most of the time these days. I cry in children's animated films when something nice happens to the character. This other uncontrollable outbursts is on top of that.
     
  16. Justy

    Justy Senior Member (Voting Rights)

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    Perhaps it is related to severity in some way? I agree that we get close to the edge of a lot of things emotionally when more severe. I also dont allow myself to laugh or cry much as it causes such severe PEM and crying makes me react a bit with flushing and itching. SO everything gets pushed down and must burst through somewhere.
     
  17. Justy

    Justy Senior Member (Voting Rights)

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    Sounds just like pseudobulbar. Sorry you were experiencing this - sounds distressing.
     
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  18. stan d'mann

    stan d'mann New Member

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    I stumbled across this fix recently myself. I think. I am a 6-year diagnosed Parkinson's patient. A year ago I had DBS (Deep Brain Stimulation) surgery to alleviate some of my symptoms, and it helped a lot, mainly with my arm/hand tremor. Prior to surgery my wife asked the surgeon what we should expect in terms of personality and cognition changes. "You may be more sensitive" he said. By which he apparently meant I'd cry a lot if I'm exposed to the slightest stimulation, i.e. just about anything the least bit sad or heroic in a tv show or movie. I self-diagnosed, confirmed by my neurologist, that I was experiencing PBA, a not-uncommon side-effect of DBS surgery.

    The only medication he could offer was Nudextra, a $1000/month mixture of dxm and quinine. Yes, cough medicine and tonic water, but in a more potently expensive chemical blend. I forewent the meds and kept my money in my pocket, choosing instead the tearful mantle of Renaissance Man.

    A few weeks ago I stumbled upon a great placebo (or great home remedy, I'm not yet sure which), which I now find validated somewhat by your Alka Seltzer routine. My method is to drink some club soda, inhaling the CO2 while drinking it. Consider the similarities: breathing into a paper bag to cure hyperventilation episodes, Alka Seltzer's production of CO2 when you make it... all these things mess with your breathing, just like dxm. Right? I'm not a doctor, nor am I in any health-related field, so this is really just anecdotal, speculation, so far. I just think the common thread may be useful to check out.

    #Neudexta, $1100/month
     
    Last edited: Jan 17, 2019
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  19. rvallee

    rvallee Senior Member (Voting Rights)

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    I'm pretty certain I did. I described it in a post recently.

    I had lost consciousness at home a few weeks prior, suddenly while watching TV (it was my 4th time, I think). Afterward I wasn't able to move for 1h, vomited and tried to sleep but I was shaking intensely and fighting losing consciousness again. Felt extremely dizzy and shaky for the following days, on the verge of losing consciousness and having trouble keeping my balance. Weird headaches. Then at lunch about 2 weeks later I suddenly felt like I was about to lose consciousness. I was shaking, full body tremors like I was on the verge of hypothermia.

    I was sent to the hospital and a bit after spending some time in a very cold room I hyperventilated, heart shot up to 180+. When it subsided I had strange waves of extreme crying. No emotion, didn't even felt sad, or really anything in particular. It was like someone just touched on that area of my brain. I'm talking crying like a baby, almost choking myself, the kind that's almost violent. But didn't really feel anything, neither sadness or panic or anything like that. It was more like a reflex I couldn't control.

    I'd cry for a few minutes (I was completely ignored while it happened), then it'd subside. It'd come back again, and again, for about 1h, each time a bit less intense. Once this was over, I was slightly hysterical instead, in waves also, laughing even though nothing was funny. It wasn't as intense, lasted for maybe 30 minutes. I stayed the night in the hospital, my heart was checked. When I left, my old life was basically over, though I didn't know that at the time...

    I thought it was panic attacks, even though it felt nothing like it. Just didn't know what it was so I just assumed. When I read on pseudobulbar it fit perfectly, but I'll probably never know since it was 10 years ago and it wasn't investigated beyond possible heart problem at the time. For the next several months I was completely spent cognitively, literally lost the ability to read. It took years for fatigue to be a significant symptom for me, so there goes that stupid obsession with that single secondary symptom.

    It took me nearly 5 years to find a GP after my lifelong GP basically told me to fuck off so by that point it was already so long ago and just rarely possible to bring up in walk-in clinic consults that generally lasted 5 minutes because they weren't interested in weird cases. It would usually be dismissed as anxiety, which I did not feel at all at the time, so it's clearly pointless to even talk about it anymore.

    Never happened again. I have no idea what to make of it.
     
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  20. Sid

    Sid Established Member (Voting Rights)

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    Hi @Justy, I too have experienced pseudobulbar affect, though not quite to the same degree of severity as what you've described. One of the old school books or articles I read on ME described it as being part of the clinical picture during the initial stages of the illness. I forget who said it, Ramsey perhaps.
     

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