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Psychosis?

Discussion in 'General ME/CFS Discussion' started by Aerose91, Dec 13, 2013.

  1. Aerose91

    Aerose91 Senior Member

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    I live in a constant state of this. I have been sick for only 8 months now and I have declined so immeasurably that almost all of my time is spent trying to go crazy. I mean that literally.

    My brain gets continuously worse on its own but if I overexert even the slightest I have severe, severe reductions in function to which I have made no recovery from.

    I'm so far from reality now I can't even tell there's anything wrong with me because I have no reality out there to compare to, nor can I even remember what reality feels like. The severe dissociation combined with psychosis and anxiety make unbearable a word that can't even touch this feeling. Some days I can't leave my house or can't go near water because I think the are a void of all time and existence. Sometimes I think my parents are plotting things against me. I go crazy because I feel all existence imploding on me. I can not feel time, the past, present, future or anything

    It's a hundred times worse than that, I just can't think up of the words to describe it.

    I don't know how much longer I can take this. Lately I have been contemplating suicide a lot because there is never any reprieve, ever. I'm not going to kill myself because I remember how much I used to love life before this started, plus I wouldnt do that to my parents.

    However, I'm starting to understand that I'm probably gong to be in some degree of this the rest of my life because of just how far I would have to go to mount any recovery to a point where I could live any shred of normalcy.

    They have talked to me about anti-psychotics but I can't tolerate any mind altering meds. I took Ativan for 10 days once and it took me 2 years to recover from it. I can't even tolerate 10mg Prozac.

    I simply don't know what to do anymore. I've only been sick for 8 months and I've declined this far already. If I were to recover 80% I would be in absolute misery- the darkness and vacancy in my brain is that bad. I'm 29, how am I supposed to live the rest of my life like this?

    I apologize for sounding so negative, I just don't know how to handle it anymore since I never make any improvement. And yes, I do basically all the protocols suggested. Most of which I did before I even got sick because of my healthy lifestyle.

    Are there any stories out there of people coming back from being this bad? Anything?
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Aerose91

    I do know of someone in a similar situation. She has both Borrelia and Bartonella which can sometimes cause symptoms like this. If you want to chat about my friend's situation, feel free to open a chat with me.

    Best wishes in this tough time,
    Sushi
    taniaaust1, justy, helen1 and 2 others like this.
  3. Ema

    Ema Senior Member

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    I echo Sushi's sentiments.

    Neuro symptoms from Lyme and other associated infections can cause the type of dissociative symptoms you describe.

    Please find an LLMD and get properly tested!
  4. Aerose91

    Aerose91 Senior Member

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    Where can I find an LLMD? And does Lyme cause all of the same PEM symptoms and all? Or is Lyme just a trigger for ME yet the initial infection remains..
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Are you able to chat? It is easier than posting back and forth? These are complicated questions.

    Someone might be able to recommend and LLMD if you tell us your area? Or any GP can order testing from someplace like Igenex. Insurance usually covers these tests. You would want to test for Borrelia and the various co-infections. Then if you showed signs of being positive you could look for an LLMD.

    Sushi
  6. xchocoholic

    xchocoholic Senior Member

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    Gluten and dairy can act like opiods in children causing some autistic behaviors.
    As adults we interpret those feelings differently. After I'd given up gluten I suddenly felt like the glass that separated me from the rest of the world was removed. I didn't completely understand my detached feeling until it was gone. The medical professionals involved in the gluten summit can explain this.

    I can't take those psych meds either. I was given those in the 70's and became suicidal. It's a shame these drugs are still being dispensed without regard to these side effects. Tc .. x
  7. xchocoholic

    xchocoholic Senior Member

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    Forgot to say that neurontin caused me to have auditory halucinations and suicidal ideation in the 90's. I didn't realize meds could cause this and ended up seeing a psych who made my life worse because he insisted that my cfs was just depression.

    Big pharmaceutical has certainly made a mess of things.

    tc .. x
  8. PNR2008

    PNR2008 Senior Member

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    I got very sick in 1988, sudden onset and I experienced some of what you are but it seems in shorter versions. Brain scans showed I did have encephylitis and seizure tendency (even though never had one but complex migraines) At that time the only drugs that helped were very low dosages of Zoloft (one eighth of a pill made me paint one side of my house), liquid doxopin (baby doseage)

    and one fourth of the smallest dose of klonopin. I feel like these drugs in minute amounts saved my life. I still have a sensitivity to new drugs but I always felt these drugs cooled my brain. Some meds can be ordered in liquid form with droppers.

    I still get disassociative states but it seems during bad episodes of POTS which makes sense because of reduced blood flow. Also I had a feeling of falling 5 floors in an elevator (demon drops to me)but attributed it to paxil, stopped that one. Hope you find some remedies and feel better.
  9. Martial

    Martial Senior Member

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    I had the same exact things happen with my fatigue, I am curious PNR 2008 what tests have you gotten? I had an extensive neurology test and brain scan which came back normal... However unlike both of you I had issues with dissociation prior to onset of any symptoms, mine due to a freeze response from psychological fears, which was getting much better until I became more fatigued.

    Aerose91, when you say psychosis does that mean you suffer from hallucinations both visual or auditory? Or is it just the dissociation? Your symptoms sound like classic De personalization to me, which is similar to how I felt in my experience as well. Sleep deprivation and changes can make this much stronger, as well as dwelling on its symptoms.
  10. PNR2008

    PNR2008 Senior Member

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    @Martial I had MRI's, Spect Scan, Beam Scan and EEG. Three tilt table tests.
  11. PNR2008

    PNR2008 Senior Member

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    @Martial Use the @ before our names and it signals us.
  12. Aerose91

    Aerose91 Senior Member

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    I have very severe depersonalization, but it entends much beyond that. I don't even consider that part of the psychosis at all. That was there from the onset of my ME but the psychosis and complete loss of touch with existence and time only came on after a couple periods of overexertion. I had an MRI which came back normal but my SPECT scan showed hypo perfusion throughout the entire length of both sides of my cerebral cortex and limbic system and brain stem. The doctor said he's never seen one so bad.

    I haven't eaten dairy, gluten, soy, corn, nuts or any other histamine food for several years. Long before I ever got ME. I am a personal trainer and nutritionist so health has always been my life. Sucks pretty had that none of that saved me from this.
  13. Martial

    Martial Senior Member

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    @Aerose91

    So was that in response to a lack of blood flow to the brain? Did they specify why or any possible causes and treatments they gave you for it? I have had pretty similar things going on lately and at times I literally felt like I needed to check myself into a psych ward, well beyond the disconnection I usually felt with DP and ego defense triggers. I was training for a personal training exam as well after years of body building and martial arts, as well as lots of physical sports and activities so I feel ya man.. I don't quite know the root of my chronic fatigue yet either... I can say that you can absolutely come back from it though, Mine was much was before and seemed to come and go regardless of physical exertion in my case with severe changing personality, that I would just watch come and go by. Have you tested for Lymes yet? I had a western blot that came back negative but I am doing a follow up with the IgeneX lab in California where I reside, they say that lab will find abnormalities and is much more sensitive then other held tests, apparently it tests for more strands and doctors have a greater access of careful looking on the subject.
  14. Martial

    Martial Senior Member

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  15. caledonia

    caledonia

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    What sorts of psych drugs have you tried, and did you try any of these in the six months prior to getting sick?
  16. barbc56

    barbc56 Senior Member

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    I have no idea if you have Lyme or CFS as that needs to be determined by a physician, None of us here are trained medical professionals and are limited to giving input as to what has helped, give support, etc and that in itself, is a godsend.

    Any kind of physical stressor, such as pain, fatigue in a chronic illness can not only exacerbate physical symptoms but also directly cause mental discomfort as well as depression, etc.. Pain, in itself can cause brain damage. I have some articles about this which I will come back and add.

    From what I am reading, it sounds like you might be in crisis, both physically and mentally which is just as much a disease state as someone with MS.. My heart goes out to you as I have been there,done that.

    Please understand I am NOT saying you are suicidal or need psychological intervention, but, if you feel that things are getting worse, I would suggest contacting a crisis health line where people are trained to sort these things out.

    I truly hope things work out for you, whatever path you choose as that is your decision.

    ETA Antipsychotic medications have changed a lot over the last decade and don't always have the horrible side effects they once had. However, you need someone knowledgeable about these medications. I have seen several people with retractable depression, improve with these type of medications. Unfortunately, it's sometimes trial and error getting the right combination and that in itself can be frustrating in an already frustrating situation.
    Last edited: Dec 15, 2013
  17. Aerose91

    Aerose91 Senior Member

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    You sound a lot like me, man. Yes all of that they said was lack of blood flow to the brain as well as inflammation in my brain (probably from the encephalitis that started this). It couldn't give me a diagnosis though- as I've already been "officially" diagnosed with ME. I was tested for Lyme but just with a western blot and it came back negative but I am also pursuing getting an Igenix test done as well as Bartonella as so many here have suggested to me. I've been on Valcyte now for about 4 months but haven't seen any improvements yet.
    I'm kind of hoping in a twisted way that it's Lyme or some variance if it because those seem more treatable than just random viruses.
    Things used to fluctuate for me slightly when this first began but since my first period of overexertion (when things got WAY worse) I haven't had any fluctuations since- just stable or downhill. I long so badly to be able to feel reality again- to feel my past and see that there is a future, and be able to exercise- being physically active was my passion in life so this is an absolute death sentence for me (not that it isn't for everyone else too)

    @barbc56 I can tell you this- I don't WANT to die, I want my life back more than anything possible. I never had any psychological problems at all prior to this illness so I can say with assured was that if I heal from this I most definately will not be depressed. It's just so unbearable sometimes when my brain descends into psychosis and I have no choice but to deal with it. Those episodes could happen from something as minor as sitting in the car for too long, and like I said prior, NEVER happened until my first period of overexertion to which the effects seem to be permenant.
    I refuse to touch an anti psychotic unless I am about to be dragged to a mental ward- I respond so horribly to any kind altering drugs. Also, as @Sushi told me- find out conclusively what the pathogen is and attempt to treat it before going down the psychiatric road.

    Like I said earlier- I almost hope it's Lyme at this point because it seems to be the most treatable of the choices I have in front of me.

    Thank you all for the help
  18. Martial

    Martial Senior Member

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    well it still sounds like dissociaton to me, which psychosis has but you are not creating an alternate reality, just having a hard time connecting to this one it sounds very common for depersonalization... i had it just as intense before too . make sure you sleep well as lack of sleep makes it worse.. ihe less attention you give it and not mind it the quicker it goes... its a defense mechanism that gets more severe with fear and introspecting on its related feelings, a little bit of paranoi is normal as well.. youthoughts can become very bizzare when there is a mind body split. it takes a bit of time to clear up sometimes upwards to yearbut with gradaul less intensity and its up and downs . for me i had to heal an inner conflict to clear it... letting my mind feel safe enough to stop dissociaton
  19. Aerose91

    Aerose91 Senior Member

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    Definately depersonalization, but there's much more on top of it. However in hoping that the DP is somewhat self-inflicted I've been working with a therapist for a while but it's very tough because of my other metal I abilities from this. I literally can not feel enough of the world to be able to make changes, look at other perspectives, etc.. There's just a blank nothingness on top of the DP. I can not feel ANY reality at all- not that I'm in an alternate reality just that I'm so far I can't feel it out there anywhere. The worse I get the less of the very problem I can feel.

    I'm really happy to hear that you have recovered from your DP tho- did yours come on with the ME? And how r u doing now? Sounds like you are pretty recovered which is very refreshing to hear.
  20. golden

    golden Senior Member

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    In Finland , the psychiatrists sound great. They understand Schitzophrenia can be healed and its almost vanished in their region. There is a 3minute clip on this link where they mention psychosis as a passing phenomenon almost. Recovery is absolubtely possible.

    http://beyondmeds.com/2011/03/21/finnishopendialogue/

    :) whilst i think this will be slightly different from having CFS, its still a precious, fluid and fluent mindset to have.

    Golden

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