1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

Severe brain symptoms and still declining

Discussion in 'Cognition' started by Aerose91, Mar 28, 2014.

  1. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    Firstly, I apologize if this is slightly long but I may need to write a bit to get my point across.

    From the immediate onset of this disease for me mental symptoms were 500x worse than physical ones, and even though I have declined physically I have declined much more mentally.

    Comparing "brain fog" to what I am dealing with is like comparing t-ball to major league baseball. Sure, I have brain fog but it's just the tip of the spear.

    I'll do my best to explain it- From the immediate onset of this I became very, very dissociated. Classic depersonalization. Since I had encephalitis my doctor said this wasn't uncommon and it should subside with time. However, it has never gotten better and only increased as time has gone on as well as any time I have over exerted. In fact, the first few times i had post exertional setbacks they only impacted my brain, making this situation worse and not my physical condition at all.

    It goes much beyond this, though. It feels as if my connection to the world is fading into a darkness, where everything is becoming dimmer and dimmer. Visually it looks as if I have just come inside after being in very bright sunlight- before your eyes adjust and everything is so dark and dim. At its absolute best everything has a bit of a faint yellow hugh, as if in a dark room that is just lit with one flickering candle.

    It feels as if my brain is plunging deeper and deeper into nothingness to the point where this week it's like I'm living in near total darkness. Its not a visual thing, though, I still have bright light sensitivity but its the way my brain perceives the world around me. It's as if I'm hundreds of feet under water, struggling to swim back to the top toward the light but I keep getting dragged further down. My thoughts are extremely faint and few, sensations are almost non-existent, and my general cognition is on an all time low. It's like my mind is on the verge of dissappearing. Things I did mere hours ago feel like a distant childhood memory and ask me to remember anything I did beyond this morning? Not a chance. The entire last year that I've had my illness is just black and there is zero connection to my life prior. Is this experience common to those who have brain fog? I mean, i hear people say things like they can't recognize familiar places or people. My cognition is generally still good in that regard, its just that my experience of the outside world and my own thoughts is extremely faint. My logic is still in tact but sometimes I start to dip into psychosis and then it becomes impossible to convince my brain of what is really going on. Even posting this feels like i'm a place far, far away and at any moment the tunnel may close.

    Aside from the difficulty of living like this and all of the physical symptoms the most disturbing part is that this never fluctuates at all- never changes or gives me any indication of lessening even 1% My physical symptoms will fluctuate and change day to day but the condition of my brain does not. Regardless of sleep, headaches, nutrition or general mood it is the same 24/7/365.

    I have expressed this concern to my doctor (who is a world renound ME doctor) several times and he just nods his head and says "yes, brain fog, very common in this disease" I try to tell him this MUCH more than brain fog but I don't get anywhere. I have even seen two other doctors because of this and no one seems to have a clue. I have had all the tests done- MRIs, thyroid, adrenals, hormones, O2 levels, SPECT. Out of all of them nothing showed anything except my SPECT showing hypoperfusion over the entire length of both sides of my cerebral cortex but my doctors still say they don't understand what accounts for this. One doctor tried putting me on Prozac to blame it on depression and yeah, I felt a little less depressed but it did nothing to address this. I don't even feel that I could be depressed because I'm much too far from reality and the real world to be able to feel depression.

    I am still pursuing an accurate Lyme test and possibly sleep apnea even though I don't have any of the classic symptoms.

    If you're still reading at this point I thank you. I just don't know what to do anymore as it seems nothing has any positive effect. I'm honestly not interested in trying a plethora of supplements or medications because I am so sensitive to everything. I would much rather figure out the root cause of this.

    For the past year I have pretty much learned to grin and bear it and adjust to this. However, recently I've been plunging further into this darkness and it's becoming quite concerning again. Does this sound like something common of an M.E. sufferer?
     
    Last edited: Mar 28, 2014
    taniaaust1, leela, rosie26 and 4 others like this.
  2. tdog333

    tdog333 Senior Member

    Messages:
    113
    Likes:
    63
    Have you tried lithium orotate? It works wonders for me.
     
  3. Sea

    Sea Senior Member

    Messages:
    741
    Likes:
    859
    NSW Australia
    @Aerose91 I thought it was quite common to experience the kind of symptoms you are having following encephalitis. Certainly it is acknowledged that permanent damage can be done by encephalitis (my brother died from encephalitis at 4 years old) Perhaps a doctor more experienced with encephalitis may be of more help to you than an ME doctor, even though many of your symptoms are the same as people who have ME.

    Note I am not saying that you don't have ME, just that the prior encephalitis may give you a better option to get help from some doctors.
     
    wastwater, taniaaust1, leela and 3 others like this.
  4. Martial

    Martial Senior Member

    Messages:
    970
    Likes:
    668
    Ventura, CA
    Like tdog333 said lithium orotate can help but everything you explained is not the result of emotional instability, I have the exact same cognitive issues you are Aeroses down to the tee! In fact I pretty much live in a perpetual Now. I have no sense of identity but feel like an outsider that has just been cast into the dark and is viewing this world as a strange place and with the sense of no real connection.. Like a little strand floating in the universe, in the complete darkness totally naked and with no reference to the known.

    The memories of "Todd" are obliterated, I have no sense of connection with my name or any old mind made identities, no ego, even my family and friends just look the same as anything else I look at, it is like living as an animal.. I have no mental filter or story when I see other people or events, so even people as close as my best friends and family feel like we have no history together. Though I still feel a sense of familiarity, I don't feel a story of me and my mom, our story and past, etc, me and my brother, our history together, etc.. Everything in this world looks the same but very beautiful. At the same time I feel like I am a complete stranger though walking through emptiness as a guest of life itself.

    I have found that this is just an ego less state though, nothing to do about it, just do NOT dwell or look into it. You need attention to the here and now that is all. Just enjoying the present and being there totally, since you have no more stories to use or imagination, as well as self reflection and things to think about.. Basically your mind has completely "stopped". I just wanted to let you know how important it is to just re direct your attention to your environment and give EVERY MOMENT your full attention and all of your senses, even if it feels strange and weird. You can risk going into Catatonia if you dwell too much on the nothingness, and lack of mental identity, ego, etc..

    I was verging on this and had to have my therapist dig me out of it, I wasn't fully paying attention to the present and stuck in an internal void set from absolute disbelief of this giant gapping nothingness, combined with the severe traumas, illness, and hardship I went through I could just sit there looking at a ceiling for hours and not move at all.. If I continued to do this longer I would have started shutting down and going into a prolonged state of catatonia and would have made it more difficult to pull out of..

    Even being in the present I can be overwhelmed with intense emotions, grief, all kinds of nitty and gritty stuff, as well as really bizarre personality changes, severe agitation, non clonic siezures, hallucinations, etc.. The Lyme for me is unfortunately largely in my brain so every herx I get the psychiatric and cognitive symptoms go into overdrive.. I have physical fatigue and neuropathy, but the brain issues are the worse...

    Obviously you are still very aware and cognizant enough that you don't need to worry about doing much, just ride it through.. You still are very capable of writing very well structured and intelligent stuff so this shows you are not going into a coma or anything.

    I also now how weird it can be, right now I am writing and can seem semi intellectual but with my waxing and waning symptoms see me in a few hours and I could be staring into blank space in an almost acute delirium state.. It fucking sucks, my symptoms are not easy to deal with at all and working part time right now, and having very low funds for treatment is extremely challenging, I am managing to make it through though and I think of course you are too! This is all we need to do, just ride it out and continue getting the required treatment you need.

    Trust me when I say I can relate to you 100% brother, I think we just need to keep our attention on the present and try to just ride these waves of really bizarre symptoms and hopefully just move right along with treatment until we recover, I know you will recover too! You just need to find what is driving these issues in the first place and work on altering things until everything is in a state of balance. Your brain issues are mainly hypo perfusion so this is not irreversible damage, just lack of blood flow. The inflammation may be there as well but thats normal as a chronic mild encphelapathic state, this also is not indicative as damaging to the brain. The damaged mitochondria is also common with many infections and will recover when the infection clears, there is also plenty of treatments to help heal the cells, and mitochondria will getting treatment as well!

    Acute brain inflammation and trauma are much more severe then a chronic mild state of encephalapathy, a mild chronic state can have MANY symptoms including very severe personality changes, severe fatigue, and all kinds of cognitive and psychiatric stuff.. This WILL clear when the infection is dealt with though, you wouldn't have a chronic inflammed brain without an underlying infection and I think Lyme is worth looking into again as this is very common for it.. It is me to a TEE as well haha.

    So you are in a really good spot, the only thing I can say is that I understand you 100% and it sounds like we both just need to ride these symptoms out like surfing waves on the ocean ;) Its not forever, as you very well know from being in this state "nothing is forever" lol

    Hope this helps man!

    Todd


    P.S. here is a site someone recommended to me and it has seemed very informative, they specialize in brain trauma, and other issues that happen to the brain in cases of infection, ptsd, depression, Lyme, etc..

    http://sponauglewellness.com/
     
    Last edited: Mar 29, 2014
    taniaaust1, golden, Wayne and 2 others like this.
  5. Calathea

    Calathea Darkness therapy

    Messages:
    1,096
    Likes:
    564
    Scotland
    What you're describing sounds like mental illness, especially the psychotic episodes and the dissociation. Mental illness is hard to get diagnosed correctly, especially on top of ME, and a doctor vaguely muttering about depression and trying you on one med does not count as proper diagnosis and treatment! It may help if you can get some idea of what it might be before chasing up doctors. The Neurotalk forums would probably be a good place for that.

    People with ME are so used to being told "it's all in your mind, dear" that we can become very defensive about mental illness. But just because ME is a physical illness, that doesn't mean that some people don't have mental illnesses as well. Once you get diagnosed, it can take quite a while to find the right medication, especially since they all can have side-effects. But finding the right medication is still an important thing.

    I'm mostly better, but I had several years of PMDD (premenstrual dysphoric disorder) on top of ME, and since that causes episodes of sudden acute anxiety/depression and even suicidal ideation, it was important to get treated. My doctors tried me on a couple of long-term medications which I didn't get on with, and then realised that a low dose of diazepam taken as needed did a great job. One friend of mine with ME has severe anxiety/depression on top, another has bipolar disorder, and they all need to be identified as separate illnesses and handled appropriately.
     
    Last edited: Mar 29, 2014
    peggy-sue likes this.
  6. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    @Calathea

    I appreciate your insight and am glad that you are feeling better- but I know it's not a mental illness. My mind is in tact and my logic is there but it's my brain that is not. My moods are generally stable, actually. Also, this problem has only gotten so bad because of over exertion which is the main reason I know it's connected to M.E. I never had anything even remotely close to a mental illness before getting this and it all just hit at once. It would seem too coincidental to me that a mental illness hit very acutely at exactly the same time that M.E. did and gets worse with over exertion at exactly the same time M.E. does.

    y
     
    taniaaust1, leela, justy and 3 others like this.
  7. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    Yo @Martial

    Sorry to hear you've got all that going on- I know you have some intense brain symptoms but I didn't think you were that bad.
    One thing that makes it tough is the fact that I'm bed ridden 23.5 hours/day. My OI and PEM are so bad that I can't stand up for more than 30 seconds at a time so I rarely even get to go outside. I know if I were able to be active I would feel better in the regards to noticing it less but I just have no options. I definitely don't just sit around catatonic tho- I at least try to work on my company as much as I can from my bed and watch things that I like on tv/movies but it gets old fast. Logically, im fully aware that I need to be do if more and WANT badly to be more connected and involved in the outside world, I just don't have the option.

    These ate the reasons why I kind of separate my mind and my brain- my mind is in tact and doing the best it can but it's very, very restricted by the limitations of my malfunctioning brain.

    You know? I've never believed that this is irreversible damage. I've seen some miraculous recoveries from people who were badly damaged and I know that in theory this is reversible, but in practice is not so easy. Unfortunately just as I continue to get worse physically, my brain continues down the same path as well. The emptiness and nothingness is just so damn strong it's hard to be fully engulfed in other things when you're laying stagnant all day every day :confused:

    As always though I appreciate the support brotha. I know you'll pull out of this and hopefully I won't be far behind. guess I'm just curious if others with M.E. experience such strong mental symptoms.
     
    golden, merylg and rosie26 like this.
  8. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    @Sea

    First off I am sorry to hear about your brother, that is a horrible thing to deal with.

    I have been sick for one year now and it has been progressive. My doctors, through symptom checks and tests believe that the acute encephalitis was gone after about 2 weeks- I did notice a slightly reduction in fatigue then and my temperature went back down. Since then though it has been classic ME- exercise intolerance, PEM, muscle weakness, OI, memory/cognitive loss etc, and all of these things seem to be exacerbated by energy expenditure.
    I have no doubt that there are some damages left behind from the encephalitis but what I felt then is completely different from what I feel now, now I am much worse.
     
  9. stridor

    stridor Senior Member

    Messages:
    324
    Likes:
    215
    @Aerose91
    You would have to go to yahoo's FDC board to see how I was in 2011. I hadn't discovered MTHFR yet and still believed that it was all related to mercury. I had a dickens of a time wrapping my head around the notion that a person can have two problems it seems.

    When I was where you are, they finally sent me home from work and said that I had not been able to function competently for months and that they couldn't "carry me" anymore. Every time I stood, my IQ would drop, and I became anxious and could only think about sitting down again. When I got home, I googled the symptom and found out that it was related to a "measurable change in blood flow" to the brain.

    The only thing that I could think of was 'that vein thing that people with M.S. have'. I trumped up my symptoms and modified my story and got tested for M.S. They did an ultrasound of the neck and found that blood is flowing the wrong way in the veins of the neck. It's called CCSVI = chronic cerebrospinal venous insufficiency. This causes venous congestion, diminished O2 perfusion, build up of toxic metabolites and mechanical pressure on the blood-brain-barrier with the potential to alter active and passive transport, integrity etc.

    I have since read that probably the majority of us with ME have this to some degree and it is the result of mitochondrial problems in the heart as it related to function of the tricuspid valve.

    Also, while our stories are not mirror-images there are notable similarities. My dysfunction started and if finishing with mostly cognitive stuff....the bread on the sandwich. The physical stuff is largely gone now.
    Were you tested for heavy metals (he asks expecting the answer "yes" :) ) brad
     
    taniaaust1, Sea and Wayne like this.
  10. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    @strider

    Wow, you have a hell of a story. Firstly- yes I've been tested for metals and the only one that was out of range was lead. I have been taking zeolite for it.

    Also, I had an ultrasound on my thyroid once and the guy checked my carotid arteries while he was there. He said he didn't see anything wrong. Since the carotid are the only blood supply to the brain I would assume this means I check out?

    You said your dysfunction "is finishing"..... does that mean you are recovering?? If so I give u a huge congratulations. If I may ask, how long have you been sick and what has been your treatment plan? I have a doctor now who wants to get me on IV lipid replacement.
     
  11. Martial

    Martial Senior Member

    Messages:
    970
    Likes:
    668
    Ventura, CA
    This is also I

    @stridor


    Did methylation treatment fix that? that's quite an interesting story man and very helpful! I do remember you saying chelating the heavy metals was one of the most helpful things you did Brad, as well as stabalizing bi polar stuff from the mercury toxicity? I am finding Andy Cutlers protocol perfect for this!

    I do remember Aeroses mentioning before having a few amalgam fillings, and high lead levels on testing..

    I also had very high arsenic, and other metals, I am willing to bet that me and Jeff( Aerose) also have the same issues with CCSVI, I will actually get that checked out with my LLMD too..

    @Aerose91

    I hear ya man, I am fortunate too be able to work and have semi normal energy levels for the most part, though have my bad days.. Though I do have the burden of feeling really strong "borderline personality disorder" type symptoms along with psychotic/hysteria type feelings lol, anyways maybe now is just a good time for contemplation and rest for you, It is very cool to at least be in an environment that is suited toward healing, having some stable living, food, roof over your head, and no real pressure of needing to work or stress triggers.. Your "decline" in mental symptoms sound the same as mine though and wouldn't really say its more damage or anything, just more intense nothingness feelings.. People with progressive brain damage don't have symptoms like us so I think its also possible there is something else going on as well. Its just funny because my mental symptoms and yours are literally so identical, can you relate to seeing everything without stories? Feeling like an outsider with the world, or really just feeling like you are percieving things without the lense of persona? Like with family members, you feel that your present there with them but inside you are like 10,000 miles away..

    Your intellectual capacity and literacy definitely show no regression in actual brain function and cognitive functioning, though I am sure you don't feel your intellectual best as neither do I haha. But actual progressive brain damage that can be a problem would leave unable to talk, forgetting how to communicate, not able to process anything, etc..
    Seems to just be a blood flow thing for the most part.. Be sure to protect your brain with some supplements though! Japanese Knotweed will protect from any damage, Gingko alongside the enzymes I mentioned to you before will restore blood flow better and real adverse side effects. PQQ and COQ10 will help heal neurons, alongside things to help lower any glutamate toxicity, quinolinic acid. Lithium orotate is also very great at presevering the brain and protecting against neuro toxicity. Basically you want to protect from neuro toxicity, excito toxins as best you can right now, as well as de toxing any current toxins that could be in your body, when you have less blood flow going your brain is not getting enough nutrients and circulation and this can make you more suspectible to toxin build up and neuro toxicity.

    I hear ya bro, of course it can be a challenging and up and down process but everyone does recover at their own rates. I know you'll be alright! No problem man! I have no doubt we will both be back to our normal healthy selves eventually of course! Also its very important to note again, feeling more nothingness and emptiness is not progressive worsening brain damage, unless you have something actively causing current neurotoxicity that goes on a severe level then you don't have anything to worry about in that department! I am sure the physical stuff will greatly lift once you de tox all the potential toxins and restore normal blood flow again as well!

    Also dont forget again to get that IgeneX test for Lyme! If possible try to get in with a lyme specialist LLMD!


    For the down time reading, and studying has always helped me.. Along with lots of self inquiry, spiritual practice, meditation etc.. Actually you can find yourself becoming incredibly blissful and growing with depth with all this time you can have for meditation now!


    Maybe try that book I recommended you check out?

    http://www.adyashanti.org/library/The_Way_of_Liberation_Ebook.pdf
     
  12. PNR2008

    PNR2008 Senior Member

    Messages:
    442
    Likes:
    690
    OH USA
    @Aerose91, @Martial and others. This was some difficult reading, not because of the technical part (certainly not easy) but mainly how devastating all your symptoms are. I know some of them to a smaller degree because I had brain swelling at the beginning of CFS/ME and have a abnormality in the frontal lobes.

    I wonder if the lack of connection with family can be almost a light amneisiac disorder. Patients who forget their families or spouses seem to feel a total disconnect with these people until their memory comes back, if it does and it's usually an episode that causes it like an injury, stress. chemical etc. It just makes me think a brain doctor who sees unusual cases could help you.

    Have any of you read Brain on Fire by Susannah Cahalan? The doctor who saved her was dealing with different cases and her story certainly was a nightmare. Spinal taps are dangerous but it was the only thing that showed the inflammation that her brain was dealing with and the fact that whatever caused it crossed the blood brain barrier is chilling.

    I remember as a child "forgetting how to multiply, or a line I rehearsed forever". Was it the complex migraines I started getting at 11 or was I having absent seizures or POTS began with the fainting after my fourth polio shot. What about the concussion I got from falling on the ice at 9 that had me vomiting, talking oddly for 2days? I remember spacing out while I was doing it.

    I am trying to say and not very well (was in the ER 3 hours ago getting IV Saline for POTS AGAIN) that other factors can be making our CFS/ME symptoms worse and finding the right doctor might change things.
     
    wastwater, golden, merylg and 2 others like this.
  13. Wayne

    Wayne Senior Member

    Messages:
    2,212
    Likes:
    1,362
    Ashland, Oregon
    Just a short note tonight as my brain is currently on hiatus. I did want to mention though that I feel fairly captivated by the remarkable discussion going on here, and hope to participate more fully as it (hopefully) continues.

    I guess I'll also just mention briefly that I've felt a pretty major disconnect with the phrase "brain fog". My own experience is not brain fog. It seems and feels a lot more like dementia. I tend to not write about this however, as some PR members have taken exception to this term, thinking it somehow undermines the credibility of CFS as a physical illness.

    Thanks @Aerose91, @Martial, @stridor and others for posting here. This cognitive dysfunction/dissociation we're all dealing with is pretty devastating, but I'm truly impressed (and grateful) by the way it's being written about here on this thread. Thanks.

    Wayne
     
    Last edited: Mar 29, 2014
    GracieJ, leela, justy and 3 others like this.
  14. Martial

    Martial Senior Member

    Messages:
    970
    Likes:
    668
    Ventura, CA

    @PNR2008


    Wow that is some intense stuff! I am so glad you are okay now though, it can always seem more scary as a small child though those are pretty normal things people mention with issues like brain concussions and the like, usually from temporary inflammation.. Like an internal bruising so to speak, seizures that are non clonic seem to do similar as well.. its really strange stuff huh! I haven't checked out that book but definitely will now! Thankfully I already know the source of my brain infection and already have testing for the inflammation, same with Aerose who found it using a SPECT scan... I think a specialist would indeed be very helpful! Especially in restoring normal functioning and pathways to the brain again, they are a bit more common then the other specialists around as well so this is always good!

    I think some things at least in my own case stem more from certain emotional issues trying to be met, as well as the spiritual side, the therapist I was talking to mentioned the same thing saying I am "walking on emptiness" Basically "A Dark Night of the Soul." the same thing as being conscious fully without an identity created like the way an infant views the world, though obviously I don't mean a regressed form of communication and cognitive function, just an ego less state, feeling very far away and not of the world so to speak, lost all interest in worldy things but feeling extremely isolated and very lost and disoriented.

    It is like the world has had the color sucked right out from itself and everything looks grey and empty, not emotionally but literally there is no substance of solidity to physical objects, people look like people all the same, an entire disconnect from the world as it is entirely. I had some very profound spiritual experiences before all of this and some degree of traumas, the stress is what triggered my latent lyme infection to become active as well.. This is notabe for causing a chronic encephelatic state of the brain, though not severe and life threatening, though complications can be. It is just strange because I have talked to many other people that have the same inflammation and hypo perfusion as well and no one mentions anything similar besides Aerose. This is why I think me and Aerose have something more going on then just the brain inflammation, hypo perfusion, etc..

    I do have the various other symptoms that go with brain inflammation including personality changes, altered states of consciousness, severe agitation, depression, mood swings, really bad temporal lobe siezures, all kinds of really weird stuff.. Previous to finding out exactly what it was driving my symptoms I was even strongly having suicidal idealization and impulses without any real stemmable source, just felt far more impulsive and very dementia like things going on..

    I know Jeff (AEROSE) does not have quite the psychiatritic issues I have with this thank god, I hope no one else has to go through something like this, however in many cases of other people with lyme and co infections it can cause severe emotional changes and all kinds dementia like states.. It is just hard when you deal with so much physical issues but there is no place to go and return to, just the big giant NO THING NESS. Not a problem though, it is just one side of the coin of the everything ness... The only cases I have seen that mention similar things always have a spiritual connection which is why I keep bringing it back into topic. If Aerose reads even some small amount of diary writing by Mother Theresa in her later years, after they found her diary and Nothingness experiences it is a perfect mirror of what we are both talking about here.


    qouted from http://www.foxnews.com/story/2007/0...rist-presence-for-last-half-her-life-letters/


    @Wayne

    Yes, I am sure many others experience similar things going on, well it is also known that many ongoing infections can induce dementia like states without any notable damage or progressive decline in actual mental function. I have spoken to many people including one gentleman who mentioned he did not even talk to people for over a year at one point. He would just sit there very spaced out and confused all day, he did eventually get 100% better when treating his underlying inflammation/infection though. Dementia is a very physical thing after all and I am sure people with ME can get similar issues as this. I have no idea why this would de credit CFS as a physical illness either. It can just be stated as an acquired or secondary state of dementia. This being it is brought out from illness and goes away with treatment, rather then an active ongoing Alzheimer state.

    I wonder how many other people will chime in and perhaps share similar experiences? I know there has to be a few more cases of mental changes rather then severe mental fatigue, or brain fog alone. My brain doesn't feel fatigued much or that fogged and still these symptoms are very intense so its pretty strange... Anyways this is an interesting topic and I hope many others can come and share some other stuff!
     
    Wayne and merylg like this.
  15. Martial

    Martial Senior Member

    Messages:
    970
    Likes:
    668
    Ventura, CA
    Another Poem by Saint John and a much lighter and blissful tone. I actually really enjoy this one as it shows the coming into fullness or union at the end, going through the different stages and challenges it provides. As well as the simple and immense joy even in the total darkness. When Embraced the Dark Night of the Soul can be a beautiful and trans formative thing! Of course it will be either way, its just our open ness to it which makes it an easier transition.


     
    justy and rosie26 like this.
  16. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    @Wayne

    Let me start off by saying that I absolutely hate to see others experiencing this type of thing but I feel somewhat better knowing I'm not on some far away planet. I never thought that I had a mental illness- in fact I know I dont- but what I'm experiencing just seems too outside of any symptom I've ever heard described with ME. I know that is the cause, though.

    I, too sometimes suffer dementia. I don't really care what anyone wants to say about it because it's my suffering not theirs and it's very real. A few months back after I experienced an episode of PEM I started experiencing sundowners, when as soon as the sun would go down my mental faculties would drastically decline. It got so bad at times that my mother once found me fully dressed, keys in hand at 3:30 am telling her I was ready to go to the doctor. She tried explaining to me that it was night and I didn't have an appointment but I told her "no, but I'm ready to go now". I have no recollection of this incident.

    As a little context I am 29 years old and before getting sick one year ago was a nationally ranked personal trainer who was owner of my fledgling company and actively participating in learning stock trading. I'm not a dumb person. These things that we experience with this disease are real and I find it rather troublesome that it isn't acknowledged. I have no problem opening up the dialogue for it. I think it's good if those of us experiencing this have a place to discuss it without fear of reprimand.

    @PNR2008

    I'm sorry to hear about your hospital visit, I currently havent stood up for more than 1 minute in about a month because of the damn OI. Since this journey began I have been sent to multiple psychiatrists and put on multiple psych meds because doctors have never heard of such a thing when I try to explain my symptoms to them. The other thing though is that I have zero history of mental illness (nor does my family) and have never had any incidents where I have experienced any sort of mental lapses. These came on immediately with the M.E. and only increase in severity based on my energy expenditure. One day several months ago I wanted to go for a walk, so I did. As I was walking, literally with every step my brain function would decline- but not cognitive function- my connection to the world, my working memory, my feelings of association were all fading further away literally as I walked. I have never since recovered them.

    I have been put on antidepressants, anti seizure meds, anti psychotics, benzodiazepines. None of them have done anything for this except make me spaced out as hell from the medication and give me torturous withdrawals when coming off. This just solidifies my knowledge that it is the ME causing this since basically everything else has been ruled out!

    Thank God i still have my logic for that is all I run on these days, I have far to little connection to anything to be able to do otherwise. I have absolutely no idea what month it is and there are many times when I loose the year. I know that this is an organic problem, my mind is still in there, somewhere, fighting to work but it simply can not because it is trapped under a malfunctioning brain.

    @Martial

    As always you've really helped me a lot through all this, bro, and I really appreciate it. I completely sympathise with everything you said, especially the psychotic/hysteria part. I don't ever do anything crazy, I keep myself controlled but some times I feel totally hysterical like when you haven't slept for several days and your emotions are just flowing out of you. Some times I'll find myself just breaking down into tears and I have no idea where it came from- I don't feel anything even close to that emotion- but it will just come. I guess those emotions are still going on in there somewhere but I am unable to feel or comprehend them.

    I also feel miles away from everyone close to me. I've unfortunately lost the ability to feel lovemaking most other "feelings". Logically i know who my parents are and that I love them but i feel no connection at all. I just run off of how I used to act around people before getting sick and stick to that so they don't notice how bad it is.

    I do suffer from much more disconnect, actually, but I just don't know how to put it into words. It's almost as if life as we perceive it is made up of several different conveyer belts converging into one central hub (our brain) to make up existence as we experience it. Each one of these conveyer belts brings in different experiences and feeling and depth to life. It feels as though if normalcy is 5 conveyer belts running then 3 of mine have shut down. Each time one of these slows and ultimately shuts down I drift further and further from being and all the beautiful depth of life.

    You know the common saying among those who are sick "I'm not living I'm just existing"? I can not even say that anymore, for i can't even feel my own existence. There are times when it's just a never ending nothingness, but there are also times when it's so bad I can't even feel the nothingness..... I don't even know what that's called. I can not meditate anymore because I have lost the ability to ground, I don't even feel enough existence to settle into anything. I survive solely on my logic and that is what keeps me sane.

    But my intelligence is still in tact, and I know that from my writing and speaking abilities. I have lots of trouble calling up info that I should know or past memories. I know their in there somewhere though, just unable to be accessed. I apologize if I gave the impression that I think this is permanent brain damage- I don't. I know that this IS reversible, however bad it gets, just putting that into practice is a different story. I have seen it myself on my SPECT, all the hypoperfusion. Even my doctor said he's never seen that much so I guess it's understandable how severe my symptoms are. I have seen probably 4 doctors (as well as being admitted to Yale neurology) on top of my ME specialist to try and diagnose this and EVERYTHING has been ruled out. The diagnosis still stands as 100% M.E.
     
  17. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    Hey @Martial

    Thanks for sharing those poems, my brain is way too fried right now to comprehend them so I will return to it in the morning. I have been talking to a therapist who specializes in depersonalization as well and though she can't really do much for my sickness it's nice to talk to a therapist that has some understanding of something no one understands.

    I feel for you so bad when it comes to the mood and drastic emotional changes. That's one thing that I don't experience- my moods are generally very stable- apathetic really. However, I have experienced that. 2 years ago I was put on Ativan for 1 week (yes just 1 week) to counter thyroid medication I was given. What they didn't know is that there's a reaction between benzodiazepines and hormones which I was taking at the time for my adrenal fatigue. Within that 1 week I was almost completely catatonic. I would wander into freeway traffic with my hands in my pockets, stare aimlessly for 18-20 hours without moving, etc. So they took me off the ativan cold turkey. Bad idea.

    I spun into HORRENDOUS withdrawals. over 90 symptoms. I won't list them all but some were halleucinations, 20 hour long panic attacks for months straight, only saw black and white, crippling fear and the insane mood changes. I would be losing my mind hysterical then immediately switch to deep depression. I developed an OCD that was so severe and crippling that I too developed a suicidal ideation just to make the anxiety and OCD stop. I knew that wasn't me but I just couldn't make it stop. There was nothing they could do for me because it was due to a major influx of glutamate and reduction in GABA so they told me I had to just wait it out. Well, it took about 2 years but it did eventually find it's way back to normal, to me. Believe it or not I'm actually a very grounded, normal happy dude! Unfortunately i only had a few months of that taste before encephalitis hit and now ME. But anyway what I'm saying is that I have been there as well and it does go, completely. As far fu**ing gone as you may feel at times and unstable as you may be you're still in there. Stability and you as a person will come back, just need to get rid of the organic problem then your brain will right itself. The part I had most trouble with was the fear of not being able to control what my brain was doing. One thing that helped me tremendously though was just letting go of some of that need to control and just letting time take its course. It was also really helpful to know i had someone stable around to grasp onto if I really needed it, my girlfriend at the time. Unfortunately she ended up bailing when I got encephalitis cuz she couldn't take me being sick anymore, lol. But during the time I needed her it helped tremendously. I know I'm not 100% stable right now but I'm always here if you need someone to pull you back down. Trust me I know how hard it can be.
     
  18. Thinktank

    Thinktank Senior Member

    Messages:
    400
    Likes:
    206
    Europe + South East Asia
    Although your case is more severe than mine i can highly relate to your story. The way you describe that your mind is sane but your brain ain't working is exactly how i experience it as well so thank you for mentioning it, now i have a better way to explain brain fog to "doctors".

    Conventional neurologists have labeled me with ADD, anxiety syndrome etc. due to lack of organic / biomedical knowledge. Every single time they refer me to a psychiatrist who wants to put me on benzo's, SSRI's etc. but that stuff either completely sedates me, causes anxiety or in fact causes depression! It doesn't matter how hard i try to explain them i'm NOT depressed they simply don't listen.

    My LLMD says i have chronic neurolyme that causes the fog, disassociation / DP etc. Sure i have chronic lyme, that's proven but is it really the cause of my cognitive problems? I'm more inclined to believe it's due to impaired blood flow and oxygen uptake. Every time i feel physically fit enough to work (very) hard on my cardiovascular system the cognitive impairment seems to lessen by 50% after a few weeks.
     
    merylg, Wayne and golden like this.
  19. Calathea

    Calathea Darkness therapy

    Messages:
    1,096
    Likes:
    564
    Scotland
    Please don't discount mental illness just because of the timing (or the stigma). I have Auditory Processing Disorder, and while there were subtle signs of it since birth, it didn't really show up until the ME kicked it into overdrive. That doesn't mean that the ME caused it! Also it's usual for other conditions to be made worse by an ME crash, so that a mental illness will often worsen after physically overdoing it. Dissociation and psychotic episodes are not ME symptoms, and they are not part of the usual cognitive dysfunction that goes with ME. Please get properly assessed for them.

    Perhaps you need a really good ME specialist who works with other specialists and can tease apart the different things which are going on. Specialists unfamiliar with ME often have no idea what to do with us, which I noticed when being assessed for my memory problems some years ago. Professor Julia Newton at the Newcastle ME research centre in England is meant to be excellent in this respect.

    And in particular you need someone who understands how ME will affect your response to medication. It sounds like you've had a horrific time in that respect, and that it's been very badly managed. Don't assume that it rules out mental illness, though. I've had a pretty awful time trying to find pain meds that work, including ineffectiveness, side effects and withdrawal. But that doesn't mean I'm not in pain!

    I had a gynaecologist once who didn't do a proper diagnosis, just put me on her pet drug for PMDD, and when it didn't work, as it usually doesn't according to research, and it was a drug group we already knew I don't tolerate well, declared that I didn't have PMDD. Utterly ridiculous. I was sitting there with a nice simple chart showing my three main symptoms and my periods, with an obvious pattern. This is the accepted way to diagnose PMDD, and she had never once looked at it. Doctors fuck up sometimes.

    And I find that low-dose diazepam is useful for occasional anxiety or as a muscle relaxant for pain, but if I'd been put on a high dose for a sustained period and then whisked off it, it would have been a nightmare and I'd probably never have wanted to touch a benzodiazepine again.

    I don't understand what you mean when you talk about brain vs. mind, I'm afraid.

    It's worth remembering that ME is a devastating illness, being almost entirely bedbound is an extremely unpleasant thing to live with, and some people actually develop PTSD from the harsh treatment they receive from doctors, social workers, welfare benefits staff, even friends or family. So in that way it's affecting your mental health as well.

    Don't get too hung up on the difference between psychiatric and physical, either. Obviously it's ridiculous when ME patients are told that, say, leg pain isn't physical, but what you're describing are actually psychiatric symptoms. Who knows what's causing them, but it's all physical when you get down to it, brain chemistry and such.

    I knew a woman who developed vascular dementia after refusing to take her high blood pressure medication (she had been insisting that she could treat it just fine with herbs and such). My cousin had psychotic episodes once as a result of meds, pain meds I think. I get anxiety episodes caused by a premenstrual shift in hormones, which can be classified as either a psychiatric thing or a hormonal thing depending on who you talk to. None of this is simple.

    Whatever's causing this, I really do recommend asking on the Neurotalk forums. They cover neurological stuff very nicely, also mental illness, also ME.
     
    liquid sky and greebo like this.
  20. stridor

    stridor Senior Member

    Messages:
    324
    Likes:
    215
    Nice to see such an active thread. Please excuse the following stream of consciousness.
    I have made significant gains but I am not finished yet. I can walk 7 miles without consequence but still have some brain-fog.

    My path is a bit different in that I knew that I had major mercury exposures as a child and tackled that first. I had a tough time as there were some early mistakes in the chelation process and I lost effective thyroid control and my adrenals tanked as I slipped into ME.

    If I had known about methylation my life would have been easier. It took a complete stranger on-line to point me in the right direction. I have something strange going on in that I am taking two mB12 shots a day plus almost 40 mg s.l. and my level is just a bit above normal at 728 pmol. Who knows how much damage I was doing through 2011 and 2012 when I was taking 580 times less. I have asked on this board and emailed B12 experts but so far I don't know why this is even a possibility.

    For the brave. If you have your amalgams out, you can try a round of ALA at 50 - 100 mg every 3 hours around the clock for at least 3 days and 2 nights. Any symptoms of improvement or worsening means that you are moving mercury. The problem with testing for levels of metal is that it will not tell us anything about CNS loading when that is our main interest.

    @Aerose91 good thread. Certainly, we would be very concerned if the carotids were not sound. The test that I did checked the veins - so, how well was the blood able to drain. It is like traffic to a city continues while traffic out is blocked by an accident....or worse yet, if traffic were trying to get back into the city by traveling the wrong direction on the freeways. Congestion builds.

    Many of us with chronic inflammation of the brain at some point start to look up the symptoms for Aspberger's and this is because we have problems forming and maintaining attachments to others. The thing is that most of us were fine when we started our first day of school. Spectrum issues are usually identified before then.

    This article was featured in a different thread:
    http://www.chronicfatiguetreatments...fatigue-syndrome-nitric-oxide/comment-page-1/

    What caught my eye was: "Many positive social pathways are mediated through NO. Maternal bonding is mediated through NO. If NOS is inhibited ewes don’t bond to their lambs. In mammals maternal bonding has to be coupled to energy status because lactation is so energy intensive."

    You have to read the whole article but it basically suggests that ME/CFS is a low NO (nitric oxide) inflammatory state.

    @Calathea I embraced the diagnosis of Bipolar Disorder longer than I should have. The psychiatrists were told about the mercury and none deemed it important. Moving against mercury and putting the thyroid meds in place has left me med free and years from my last episode of cycling. The only conclusion I have been able to reach is that I lived with the consequences of Bipolar disorder including loss of my family, multiple hospitalizations, ETC etc (I love writing that), unnecessarily.

    So acceptance of having a mental disorder....sure, but only against the backdrop of trying to figure out if anything can help. Psychiatry avoids the main questions like, "if there is not enough serotonin, why not? What is wrong with the cells that are supposed to produce it? And what can we do to help those cells". This is why I like that orthomolecular approach.

    Cheers, brad
     
    Sea, merylg and Wayne like this.

See more popular forum discussions.

Share This Page