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.
Discuss the article on the Forums.

Depersonalization/Derealization and brain fog

Discussion in 'Cognition' started by sleepingbeautyxxx, Aug 14, 2017.

  1. sleepingbeautyxxx

    sleepingbeautyxxx

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    Brain fog was my first ever obvious cfs symptom and the one that lead me to do my research. It gradually got worse over time and nobody would understand if I tried to describe it to them.

    Yesterday I watched a video of Serena Summers:
    and she mentioned that her brain fog is accompanied by depersonalization and derealization. Since brain fog still is a consistent problem for me that rarely gets better and really bothers me since I still go to school full time, I looked it up.

    I meet the criteria in many aspects. I always feel hazy and kind of drunk. My vision sometimes feels way to sharp and lights get really bright but I can't really see still. When I'm outside in the sun or inside with the lights on I feel the worst. It's very hard to describe. A very dream like feeling. It's like I'm living in a constant bubble and I feel very disconnected to the outside world. Things said to me sometimes feel like they go through a wall first before they reach me. My movements also feel weird sometimes.

    Especially since my brain fog got a lot better a few months ago after years, I really feel the difference now since it's back again. I finally felt somewhat in touch with the world, like I'm actually living in it and can experience and process all the stimuli.

    I know this can be triggered by anxiety, which I definitely have. I got some sort of social anxiety. But this developed due to the brain fog I think. Because I never fully felt like I was in that outside world which is horrible being in school and having to talk in front of people.
    I'm also experiencing emotional numbness lately. Sometimes I feel like I should cry (I cry about everything normally, it's just a release of tension for me) but lately I can't. I also don't really care about people close to me as much or staying in contact with them (I'm acting as if I would though, because I know it's not normal and I also know how I would usually act). I'm not unhappy though. I'm neither happy or sad, just in a very neutral state. Right now my anxiety is very weird... it's actually sky high sometimes (at least I know it would be) but then I'm just numb (I guess the purpose of the numbness is to shut the anxiety down).

    Now I'm really confused if depersonalization etc. is common with me/cfs and brain fog. Is it a normal part of brain fog even? Does anyone have the same experience?
     
    Last edited: Aug 14, 2017
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  2. eric_gladiator

    eric_gladiator

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    hello @Dormirbeautyxxx ,how old you?

    The depersonalization or derealization is a symptom that usually joins ME that also accompanies with anxiety for the situation, I at least so it is felt during all this time, also depending on the severity of ME increases or decreases
     
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  3. anni66

    anni66 mum to ME daughter

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    My daughter definately has derealization aspect of brain fog. time is weird for her - her brain fog and m.e is too bad fir her to go to school and life has lost its routine which dosn' t help.
    So definately part of this huge jigsaw
     
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  4. Henry A

    Henry A

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    I recognize the symptoms you describe - particularly depersonalization. I would be willing to accept it was anxiety - the problem is that it only occurs when I am experiencing strong symptoms, particularly during a relapse.
     
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  5. sleepingbeautyxxx

    sleepingbeautyxxx

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  6. pattismith

    pattismith Senior Member

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    The kind of drunk and derealization you describe fit well with what I experienced very soon when I was young and still at school. I am undiagnosed and middly affected, so I did managed to do all my school years in the bubble you are talking about.
    I hope you will find helpful doctors to go through this, this forum is a great ressource too!
     
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  7. sleepingbeautyxxx

    sleepingbeautyxxx

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    @Henry A I guess it's a vicious circle because m.e. symptoms stress you out, your symptoms get worse, depersonalization gets worse, anxiety gets worse, m.e. gets worse and so on...

    but for me it's almost permanently... It got only better that one time since the start of my cfs. (but of course it's worse when all my symptoms worsen)
     
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  8. sleepingbeautyxxx

    sleepingbeautyxxx

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    Thank you @pattismith
    how do you manage it now? Like you said is was bad in school, is it better now?

    I have a very nice doctor. She diagnosed me. :)
     
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  9. pattismith

    pattismith Senior Member

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    I'm so glad you are diagnosed...As I said I wasn't and so my state got worse with time.
    This diagnosis will allow you to understand about this disease, and to understand the different ways to fight it with your doc help. You are in the right place to do so.;)
     
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  10. anne_likes_red

    anne_likes_red Senior Member

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    @sleepingbeautyxxx What you describe, I felt quite acutely in the weeks following the event (infection and hospitalisation at 16) that tipped me into what was later diagnosed as ME.

    I experienced some of the visual symptoms prior to onset too....from around age 11.

    Just want to mention I've recently been assessed with, and started treatment for, moderate auditory processing and mild sensory processing disorders (probably present since birth) and some of what you describe I associate with those conditions.


    Best,
    Anne.
     
  11. sleepingbeautyxxx

    sleepingbeautyxxx

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  12. anne_likes_red

    anne_likes_red Senior Member

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    I'm having home based treatment using this system http://integratedlistening.com/ and some clinic based treatment for higher frequencies. I believe it stimulates the vagal system, and increases parasympathetic activity.
    I was stressed at a low level in extra-busy or noisy environments as a child but it was never picked up as a health concern, more as a personality thing I guess. Early school reports note I was more relaxed in a smaller group setting.

    I read that a version of the intervention I'm using is being developed for a trial with fibromyalgia patients - in collaboration with Robert Naviaux in fact.....who presumably will be addressing the cell danger response pharmacologically.
    I have a fibromyalgia diagnosis as well as a ME diagnosis so that really interested me! :)
     
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  13. sleepingbeautyxxx

    sleepingbeautyxxx

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    That looks very interesting! @anne_likes_red
    Has it helped you so far?

    I couldn't handle noisy and busy environments as well when I was a child. I had to join an extra small group with quieter children in kindergarten because I cried the whole day in the normal group.
     
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  14. PatJ

    PatJ far and free I gaze

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    I've had this for most of my time with CFS/ME (more than a decade.) What helps me: methylfolate, methylB12, LDN, flax oil, proteolytic enzymes. I think it may be due to brain inflammation since anti-inflammatories like flax oil and proteolytic enzymes help.

    I also have experienced the problems with light. It's as if everything has been oversharpened in a photo editing app and edges have a halo. This doesn't happen as much as it used to.

    My main problems with light are that certain types of light increase my brain fog and result in dizzyness and poor coordination (and taking vitamin-d amplifies the effect.) Flourescent light isn't good, compact flourescent is even worse, blue-white vehicle headlights and LED lights are terrible for me. The only light I can tolerate is incandescent, halogen, and sunlight. I have to use an old computer monitor that is severely dimmed and limit the time I spend in front of the display.

    The supplements I take to reduce brainfog also reduce the light sensitivity and increase the time I can spend on the computer.
     
  15. Philipp

    Philipp

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    The derealization sensation became a lot less common for me when I stopped gluten. I still occasionally get it when I overexert myself (mainly mentally) though, so logically this can only be contributing but not be causal.
    I have absolutely no idea if i always had problems with that or if it developed over time, or how applicable it might be to your situation. Just putting it out there!

    If you always have been sensitive to stimuli you might have some kind of disposition towards excitotoxicity, some people find magnesium threonate helpful for that. But it's kind of expensive and seems to be relatively hit-or-miss (I myself do well on it). I've read some speculation that it is mostly the threonic acid that is helping, but I don't know if anyone followed up on that and got some results (would be a cheaper option if it worked).

    The occasional 'high' dose Vit C (~5g) and just plain old magnesium citrate (couple hundred mg) has helped me as well. But I have no clue how to predict if you would respond well to any of that.


    Oh, and if you ever have to describe the feeling to anyone, 'have you ever been awake for more than 24 hours way past the point of tiredness, but to the point where you just weren't sure if anything around you is real anymore?' has worked sometimes to communicate with my healthy friends, because some people had that experience. Probably not the exact same thing we go through, but close enough for some of the healthies to sort of get the picture.
     
    Last edited: Aug 15, 2017
  16. BFitz89

    BFitz89

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    I have brain fog 24/7 and at times I'm so severely affected that I feel insane. I suppose that's the derealization. Coffee seems to trigger the derealization and I've sworn off it for now. Certain foods seem to make the fog worse and my gut more inflamed.

    Everyday I wake up hoping they've found what causes all this hell, but each day I'm let down. I don't know how I'll live another 50 years with this intense brain fog and general fatigue/ malaise.

    Take care everyone.
     
  17. sleepingbeautyxxx

    sleepingbeautyxxx

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    @BFitz89 I'm waking up everyday hoping that it just disappears.

    Sometimes I'm asking myself too how one's supposed to endure that a whole life. :/
    But we have to stay positive I guess! Still got hope that it just goes away after a few years or an effective treatment is discovered.
     
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  18. anne_likes_red

    anne_likes_red Senior Member

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    Yes, it's treating/balancing the reception of all sound frequencies by exercising the middle ear muscles with filtered music.
    The biggest, most obvious effect is that it seems extremely calming on the nervous system. I'm falling asleep faster, same as my youngest child who's 2 months into treatment. He's much less tired after a school day.
    .....I'm not intending to suggest this as a ME treatment, I'm just impressed at the cognitive improvement it seems to be bringing and this has always been my sticking point.
     
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