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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Severe altered consciousness

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Aerose91, Oct 21, 2013.

  1. Aerose91

    Aerose91 Senior Member

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    Hi everyone, this is my first post here and I am desperate. I also posted this in the cognition section because I'm desperate to find an answer.
    This started for me in March when I took one pill of Phosphatidylserine. I went to bed that night and woke up soon after with a major panic attack. Immediately from that point I dissociated badly, had severe memory and cognitive loss, horrible headache, bright light sensitivity, nausea and a bunch more. The next few weeks I developed joint pains, flu'ish symptoms, POTS, swollen lymph nodes and extreme exercise intolerance. I went to see DR Enlander in NYC and he told me I definitely have M.E. And it looks like I got it from encephalitis. However the viral assault on my brain hasn't gone away.
    Before this i was a personal trainer, now my exercise intolerance is so bad that just going to Dr Enlanders office caused me a HUGE permenant relapse. It made my dissociation and level of consciousness got so much worse that I have now lost all touch with realty (even being dissociated from it), have no feeing of time or existence as a whole and is starting to get so bad my brain can't even feel anything wrong with me at all. I can't even closet eyes anymore and picture myself when I was healthy because I can't feel it. I have zero anxiety or depression because I feel nothing. I can't feel where I am now an compare that to where I'm supposed to be. I can't even feel what's wrong with me anymore because I'm floating too far in this oblivion. It is an absolute nightmare but my brain damage keeps progressing. Some days if I as much as walk down the flight of stairs I will get a relapse- but every time this happens its permenant. My body will eventually get better but my brain never does. Also, if I overexert at all it won't hit me until I'm sleeping when I will be woken up by intense nerve pain, and a racing heart. Then afterward my brain will have pulled back even more. I was admitted to Yale Hospital for 4 days and they found my ANA test to be negative, ESR was 5, slowing on my EEG and found a few white blood cells in my spinal fluid. However, all of the viruses came back negative (didn't test for HHV6 in my CSF tho) and I had an MRI and MRA which both came back negative. They think I may have neuro inflammation in my brain so I'll be getting a SPECT scan next week. However, as good as it is that the scans are normal it doesn't big me any answers or treatments.
    I'm absolutely desperate for this to stop. My psychiatrist told me once touching on psychosis and I believe him. Dr Enlander put me on Valcyte because I have HHV6 and we suspected HHV6 encephalitis, but after 5 weeks on it I'm still getting worse.
    Has anyone heard of anything like this? This is in no way, shape, or form brain fog. It is functional brain damage and a permenant altered state of consciousness that doesn't fluctuate- it only gets worse. Anyone get ME from encephalitis and then have progressive brain damage? I'm desperate for this to stop and start to heal my brain. I would love to hear from someone else who may have been through the same thing and maybe some success stories. Thank you

    Aerose
     
  2. Grigor

    Grigor

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    I'm surprised nobody wrote here . It's sounds like a severe form of de-realisation. I was laying in the dark for 3 months . Too sick to sit while eating in bed. Sunglasses etc. Around this time I was out of it. I still am. But it calmed down somewhat.
    Don't despear. It's no brain damage. It probably will pass at some point . But it's hard. Nothing feels real. crazy stuff. I think it has something to do with the adrenals and orthostatic intolerance.
    Hope you recovered somewhat.
     
    Last edited: Sep 22, 2014
    Wayne and Michael_venice like this.
  3. KelcieLe

    KelcieLe

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    You must get treated at your nearest urgent care center. And you should never take pills you are not prescribed.
     
  4. adreno

    adreno 3% neanderthal

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    Because all the pills that doctors prescribe are very safe.
     
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    :lol:

    Don't worry, anyone - this thread was started in 2013 and @Aerose91 appears to be still very active on Phoenix Rising.
     
  6. Aerose91

    Aerose91 Senior Member

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    Yes, I'm still here. Unfortuantely in the same brain situation but still here.

    @KelcieLe FWIW phosphatidylserine isn't a prescription and it was recommended to me by my doctor. I even took less than the suggested amount.

    @Grigor yes derealization is definitely part of this, just not the whole thing. Its much, much deeper than just DR. Anytime I overexert my dissociation and psychosis seem to get worse.
     
    Last edited: Sep 22, 2014
  7. Grigor

    Grigor

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    That's correct . I had the same thing. Or have. I have had DR since the beginning of ME. And whenever I did lots of physical activity it got worse . But with resting it would slowly go down But now since my relapse it stayed like that. I do feel it's coming down a bit now .
    Is started on Ginkgo and Potassium and it helps a lot so does B12
     
    justy likes this.
  8. adreno

    adreno 3% neanderthal

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    Derealization can be associated with glutamate hyperactivity.
     
  9. Grigor

    Grigor

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    How to stop that?? Or how to fix the hyperactivity. Would love to know. Maybe it would help me a lot.
     
  10. adreno

    adreno 3% neanderthal

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    NMDA antagonists.
     
  11. Grigor

    Grigor

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    Uh.....any supplements ?? Sorry for asking.
     
  12. adreno

    adreno 3% neanderthal

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    There is an incredible long list of supplements and drugs that lower glutaminergic transmission. You could try NAC, theanine, magnesium threonate, lithium etc. Many threads on this too.
     
  13. Grigor

    Grigor

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    Ah. Ok. Tried some of them. I will go and check it out. Thank you.
     
  14. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Aerose91 I never saw your original post until today or knew what you were going through. I was wondering if you have ever seen an integrative psychiatrist who has knowledge of both worlds (traditional psychotropic meds and supplements/naturopathic treatment.)
     
  15. Aerose91

    Aerose91 Senior Member

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    Glad to hear you have had some success with the DR, man. I hope you continue in this direction.
     
  16. Aerose91

    Aerose91 Senior Member

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    It's bad, very bad. All day every day and my brain has only gotten worse since that first post unfortunately.

    The closest I came was Dr Romeo Mariano in Monterey, CA who is a psychiatrist who practices neuro-endocrinologist. Brilliant man, no doubt. He did a good job of understanding why my brain was acting the way it is and describing to me how brain inflammation and mitochondrial damage can cause this. Unfortunately he was big into medications and wanted me to take a cocktail of things from anti-seizure med.s, to steroids to anti-psychotics.. all at the same time.
    He had a great grasp on the neurological side of my damage but not much understanding of M.E. I decided to go other routes because there's no way I'm going down the psych med rabbit hole.
     
    Grigor, ukxmrv and justy like this.
  17. Sidereal

    Sidereal Senior Member

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    Hi @Aerose91, I'm very sorry to hear about your difficulties. Has anti-NMDA receptor encephalitis been ruled out?
     
  18. Aerose91

    Aerose91 Senior Member

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    It's something that has been discussed but at this point I can't afford to have any more tests done. I spent 4 days in Yale for them to find nothing and send me to a psychiatrist (nothing new for a lot of people here)

    I have my own theory that the location of the initial infection tion has a role in which cells become the most damaged. For instance- most people get this from a flu and have mostly problems with their body and brain fog as a symptom. Mine started out as encephalitis and this disease IS in my brain and things in my body are secondary. Not sure if there's much value to that but it seems to make sense to me, anyway.
     
  19. Grigor

    Grigor

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    Now that the weather here become grey again. I seem to get more dizzy and also more DR.

    Did you try something like Ginkgo??

    I'm thinking of trying a saline solution IV . Maybe it will improve things a lot. Cause the DR and specially the dizziness seems to get worse when I just have been to the toilet . Blood went to the intestines . No blood in the brain etc.
     
  20. Aerose91

    Aerose91 Senior Member

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    My DR never fluctuates, not even 1%. The only?time it gets slightly worse is if I'm very sleep deprived (which is often) but if I go on a streak of decent sleep it doesn't improve at all. I've tried many, many things and I really feel like the problems in my brain are much more deeply rooted than something a supplement can fix.
     

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