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Another strange affect...

Posted , 6 users are following.

Yvonne72736
Yvonne72736

Hello, I am just wondering if anyone else out there gets what I describe as 'Brain zaps'?  It feels like my brain kind of jumps for a second, or like an electric shock, or like when something makes you jump only I feel it inside my head.  It's feels horrible, and is quite scary really as there doesn't seem to be anything I can do to control it.  It happens every few minutes for quite some time, and only dissipates if I rest. I'd really appreciate a reply, it's a bit scary happening on top of all the other symptoms of M.E. I get. I've had M.E. For  28 years now.  Having a bad relapse presently after Acupuncture treatment for a nerve pain problem. It fixed that but cause M.E. To go overboard again!

its brilliant to be able to talk to everyone on here, as you all understand exactly what we contend with daily.

Best wishes and kind regards,

Yvonne

 

1 like, 13 replies

13 Replies

  • caitlin39841
    caitlin39841 Yvonne72736

    Posted

    Hi Yvonne. sorry to hear you're having a difficult time. yes, i  get what icall 'brain zizzes'. they are, however, more  continous i nature.  they may last  for a couple of hrs - and soemtimes days if i don't rest immediately.  overdoing it brings them on and resting (bed for a day or 2 sometimes) gets rid.  i describe mine as like being wired up to the national grid. very uncomfortable  and can be disorientating.

    C

    • Yvonne72736
      Yvonne72736 caitlin39841

      Posted

      Hi Caitlin, thanks for replying so quickly.  Yes 'zizzies' is a great way to describe it! And I agree, I too have had them on occasion that last as long as you mention, they are particularly horrible and distressing.  I've asked my GP what they might be, and he didn't know.  Although he did say,

      "I seem to remember reading about this somewhere, I'll research and get back to you." 

      But in the end he couldn't find where it was he'd read about them. 

      Oh well.... Onwards and upwards eh? Thanks SO much for replying I always think it helps to know someone else out there has experienced

      the same. Sending good thought your way!

      Back to resting......

      Best wishes Caitlin 

       

  • Beverley_01
    Beverley_01 Yvonne72736

    Posted

    Hi Yvonne,

    Nothing surprises me with this condition! I get more complete loss of cognitive train of thought and my brain almost fizzing. The jumps are more In my body like bits have a life of their own. Hope it's one of those temporary cfs/me symptoms that go soon as mysteriously as they appear

    Best wishes

    B

    • Yvonne72736
      Yvonne72736 Beverley_01

      Posted

      Hello Beverley, firstly apologies for not replying sooner, been suffering those random symptoms pretty badly recently. But never the less, here to wish you a very Happy Christmas...fingers crossed we aren't all knocked for six 😊 by the celebrations!

      Yvonne

  • lisa06301
    lisa06301 Yvonne72736

    Posted

    Yvonne, I have had those.  I take an antidepressant, and if I accidentally forget to take it, I experience exactly what you are describing.  It's kind of like a mini seizure.  If you are experiencng this, talk to your doctor.  I also take Klonopin for anxiety which is also an anti-seizure medication.  Perhaps they can temporarily prescibe it to you.  It concerns me that it followed an Acupuncture treatment.  Did you talk to the Acupuncturist about it?  Also, I have an appt for Acupuncture for a nerve issue in my neck.  I'm a little worried about that now that I have read your comment.  Where on your body (if you don't mind me asking) did they perform the treatment?

     

    • Yvonne72736
      Yvonne72736 lisa06301

      Posted

      Thanks for replying Lisa, I get them also if I forget a dose of amytriptiline, so does my daughter. Not nice at all!

      i do hope you went on alright with the Acupuncture, I do think it's good, it did help my nerve pain. The practitioner used needles all over not where the actual nerve pain was, but by now I expect you already know. Very sorry to be long in answering I've been in a bad relapse since.

      Thanks for replying, and wish you a very Happy (but gentle)Christmas!

      Y

  • needalittletlc
    needalittletlc Yvonne72736

    Posted

    It's always amazing to me when I have a weird symptom that I can't describe and come across someone with the same symptom that describes exactly what I'm feeling. I also experience this and they are always followed by an increase in many more symptoms. If I'm resting it is more subtle where I just think "I'm pretty sure I had a zap" and If I'm standing or walking it's like the ground is coming up to meet me! When it's subtle I know that when I get up to move around I'm going to have a problem...

    I have balance and coordination problems and cannot walk without a cane. My subtle "zap"is confirmed when I stand up and start to walk. I lose all coordination and have to hold on to walls and door frames and drag myself to get anywhere (my frequent bathroom visit symptom of course flares up during these times). My left foot drags so I end up sort of sliding it behind me.

    When it happens while walking or standing I will kind of fall forward. If I'm standing I can usually grab on to something first because I'm warned by the "zap".

    In occasion I have a very odd feeling like I'm gradually (but quickly) "freezing up" and become so weak I can hardly talk or hold on to anything. One time I was holding on to a mug and had to ask my husband to take it out of my hand before it falls.

    Sometimes these episodes are fleeting and other times it lasts anywhere from hours to several days.

    Sorry for the lengthy response but I am so grateful to find someone with a similar experience, although sorry that you are experiencing it!

    Tracey

    • caitlin39841
      caitlin39841 needalittletlc

      Posted

      Hi NALTLC.

      from the symptoms you describe you could have a b12 deficiency. being an auto immune disease it often accompanies ME/CFS. the symptoms of each overlap. it might be useful to have both your b12 & Folate levels checked. i had the symptoms  you describe above, particularly the balance/coordination ones which have now almost dissappeared once i commenced b12 treatment.  have a look at the 'healthUnlocked' website in the Pernicous Anaemia secion (PAS)  and the PAS website. both are realible sources of information.

    • needalittletlc
      needalittletlc caitlin39841

      Posted

      Thank you so much for your response. My B12 levels were actually ok but my specialist said that people with me/cfs sometimes benefited from b12 shots despite good levels. Unfortunately, I sometimes have paradoxyl reactions so ended up in bed for days feeling like I was sedated. I've been tested for just about everything and although I've secretly wished for a negative result, my blood work always shows I'm perfectly healthy! When I first became ill I had what looked like a stroke and my whole left side became temporarily paralyzed. My walking difficulties predominantly affect my left side (like my foot dragging) so I truly believe my brain has been affected.

      Thank you again for the information smile

    • caitlin39841
      caitlin39841 needalittletlc

      Posted

      Hi again NALTLC.  yes, i well understand the paradoxial expressions of this condition. it's got it's own unpredicatable rhymes & rhythms which makes it so difficult to optimally manage it. 

      i can resonate too, with the left sided weakness/temporary paralysis. i had similar & in fact, due to same have 'aged' asymmetrically. it's amazing the odd similarities that ppl with ME/CFS present with.  

      as your Specialist says, many ppl with normal levels of b12 benefit from b12 intervention.  we  have a ME/CFS Specialist here in the UK  who strongly advocates b12 injections regardless of the serum blood results.

      hope you're managing to cope with the many challenges/limitations of this condition. lots of TLC thoughts going your way.

      C

    • Yvonne72736
      Yvonne72736 needalittletlc

      Posted

      Hi Tracey, only just found your reply, so sorry! You have described it all really well, as I also have had that co-ordination problem, where I needed to hold on to things and kind of drag myself around. It's really frightening to feel not in control. I have also had that freezing-up feeling as well, I actually felt like I was dying at the time, it was a good few years ago now but I can remember how scared I felt. When I'm getting the brain zaps I know something is going on and if I don't rest enough i get frightened it might come back permanently. It makes you feel anxious. It's really hard to know just how much you can do without having a setback I find. Do you find that? 

      The holidays and high-days are difficult, as we really want to enjoy them and have a lovely time, but at the same time we have to be constantly aware we might be overdoing things (it's almost inevitable that we are I find!).  I do hope you are feeling at least a bit better,it certainly has helped me to read your description of symptoms as it matches mine and it somehow helps to know.... 'No, we are not alone!'.

      Wishing you a peaceful and happy Christmas and a virtual hug.

      Yvonne

    • needalittletlc
      needalittletlc Yvonne72736

      Posted

      Hi Yvonne,

      You may not have missed it as they held it because I included a link. It was to the Hummingbirds Foundation for ME which I find is a great source of information.

      I for sure find I'm anxious about what to do and what not to do and if it's going to affect me permanently. That's been my experience so far! I see a specialist here in Toronto who thinks this may stem back to what she thinks may have been a mild meningitis episode when I was 18 (diagnosed at the time as a virus). I'm 44 now. Fast forward through lots of fatigue to 10 years ago when I had my twins. I believe everything started getting worse then and blame it on the tough pregnancy. And then 3 years ago after my "stroke" episode got significantly worse.

      Since then it's a DAILY dilemma of where to expend energy, if at all. I've learned to control my life for the most part but of course we can't stop those things out of our control so there is always that fear of it getting worse.

      I really do find it amazing to have found someone with those same symptoms! My family doesn't question these episodes anymore because They don't understand what's going on, They just go with the flow and help me with whatever I need at the time. Now I can say I found someone with the same experiences!

      I hope you also have a great holiday and stay well during it smile

      Tracey

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