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Cognitive Symptoms Are Scary

Discussion in 'Cognition' started by Carrigon, Oct 15, 2010.

  1. Carrigon

    Carrigon Senior Member

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    Today, I had something kind of new for me. I was out in the car, I was across the street with it and I had a good few minutes of not knowing where I was. It literally felt like I was in a foreign country. I didn't recognize where I was. It was such an odd feeling. I was only across street from my building, didn't recognize the street, nothing.

    This was different from the time I had total amnesia and didn't know where I was or who I was when I was driving once. This time, I knew who I was, I just didn't know where I was. It was very scary and lasted a good few minutes while I was driving. It was like, what country am I in? One more reason for me to get the disabled busing and not drive anymore. I don't think it's safe for me to be out driving when I get this stuff. I still like to drive on a good day, but I never know when something like this will happen to me.

    I had a total idiot of an old family friend tell me that everyone gets that. No they don't. Not everyone suddenly feels like they don't know where they are when they are across street from their home. This was not a feeling of how do I get there. This was that everything was not recognized by my brain. I didn't recognize the buildings, nothing. All my surrounds felt and looked to me like I was in a foreign country. And it lasted a good few minutes. It was very scary.
     
  2. Esther12

    Esther12 Senior Member

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    I don't know. Sometimes, if one gets lost and then stumbles upon familiar territory again, it can take a while for the scenery to 'click' with your memories, and until that happens your perceptions will feel alien and new, even though the're really well known to you. I've had this happen a few times prior to getting ill.

    If you're really fatigued then this sort of cognitive disassociation might be more likely and more confusing, but I'm not sure it's fair to say it's idiotic to describe this as something that everyone will expect to get at some point in their lives. This friend may well have suffered something very similar.

    These sorts of things can also be more troublesome when you suffer from a condition like CFS and have been largely abandoned by the medical community. If this sort of memory glitch became a more regular thing then most people would pressume that they'd have doctors working to find out what is causing the problem, we with CFS expect to just be left to 'manage' our own symptoms and that makes everything rather more scary.
     
  3. Wonko

    Wonko Senior Member

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    fun aint it - i can get lost on 100m walk on a straight road that I've known for 10 years - i dont drive anymore (and havent for nearly 20 years)

    another fun one is gettign temporally lost - having no idea what time is - eg someone says they'll meet me at whatever which is in say 2 hours and despite the fact I have a watch I have absolutely no idea what they mean - or what the numbers on my watch mean - or how to get to 2 hours from now (and not just because i dont know where now is) - it is literally the equivalent of being geographically lost but with regards to time - first few times it happened were seriously disturbing

    Esther - thats not it - I can be fine - then suddenly realise I am totally lost and have no idea why I'm there or where I was going - and a minute or 3 later everythign clicks back in - this is in totally familar environments
     
  4. LaurelW

    LaurelW Senior Member

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    I've had the same thing happen where I'm driving and completely forget where I am, usually at night. Also, I was just in Las Vegas, and drove down to the strip at night--big mistake! The flashing lights on the signs and the red taillights almost had me in a panic attack and I had to hightail it out of there--as much as you can in wall to wall traffic. I decided I better not drive at night until I get better.
     
  5. Cloud

    Cloud Guest

    Like you Carrigon, I would get that for several minutes at a time and not know where I was at, even though it was very familiar territory. Many times it would take a bit to remember who I was. I used to get that so often that I kinda got used to it and wouldn't freak out....I would just lay down until it passed and often that would be in places that would draw attention. I used to look for my "lay down" spots wherever I would go. That level of cognitive malfunction was associated with OI for me....I haven't had it for a couple years now. So, your not alone with that symptom and hopefully it will pass soon for you.

    I got a new symptom this week.....pain. I am one of the 10% defined in the CCD who don't have pain, but all this week I have had really bad muscle pain...not joint, but muscle pain. I have often felt lucky to escaped that symptom since it is so common and because my ME/CFS has been more than enough without the pain. Hopefully it will pass. I am thinking lactic acid....but I haven't over exerted myself. Maybe all the B12 I took this last week opened all the gates.
     
  6. Levi

    Levi Senior Member

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    Orientation problems

    Its been a long time, but when I first became afflicted I went though a spate of ending up in the wrong house, standing there in the kitchen or living room of someone else's domicile, and saying to myself; "somethings not right here". Luckily I never had an imbroglio over those mistakes, but the consequences could had been extreme. Its amazing how few people lock their doors.

    After about the third time I started always checking to be sure my keys fit in the door lock before entering my house. I am much improved now.
     
  7. Carrigon

    Carrigon Senior Member

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    This had nothing to do with being fatigued, and I wasn't lightheaded. This was like memory loss and sudden. This was not a finding my way home thing. This was that I had driven to the building across street's parking lot and not recognized my surroundings at all. Nothing looked familiar to me. The buildings did not look familiar, the street did not look familiar. It was the visual equivalent of when I get the audio processing disorder and everyone sounds like they are speaking in a foreign language. This time is was visual. I might as well have been in Greece or the Middle East. That's what it felt like.

    Trust me, I have every right to call the old family friend an idiot. She is not ill, never has been in her life. And anything I've ever told her about this disease, she claims everyone in the world has it. She tries to deliberately belittle anything I have ever said to her. She doesn't know what she's talking about. And she has never believed this disease was real. She always likes to make it sound like I'm just whining about common everyday problems.

    What I had today was NOT common. This wasn't one of those things where you just can't remember where you parked the car or how to get to a place. This was a total sense of that I wasn't even in the same country. If I had suddenly been dropped into the middle of a Turkish town, it would have been the same feeling.
     
  8. SOC

    SOC Senior Member

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    I know exactly what you mean. I've had the same experience, but very, very briefly. It is not like any form of forgetting, or being lost. It's totally weird -- it's a loss of recognition. Think of looking at your face in the mirror and not recognizing it. Not so much "Whose face is that?" as "That's a face I've never seen before." It's hard to describe if you haven't experienced it. It's disconcerting at the very least.

    I have a friend with chronic Lyme who described this experience to me years before I experienced it myself. It happened to her fairly frequently for a period of time, so she had to give up driving for a while because she'd be driving around familiar places and suddenly not recognize her environment and therefore not be able to navigate.

    I have a persistent HHV-6 infection and HHV-6 is known to be neurotropic. Is chronic Lyme neurotropic, too? Maybe this weird experience is a symptom of a neurological infection...?
     
  9. Lucie

    Lucie

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    I, too, have had that experience - but only a couple of times and in the first stage of the illness. I've also had the experience of not recognizing someone I knew perfectly well.

    Regrettably, I've also had a friend who has told me on several occasions that she feels the same things I do. Uh, don't think so. This week she sent me an e-mail telling me she "envied" my rest and alone time. Sad. Don't think this friendship is going to work out. At least I know that she has never experienced anything like FM/ME/CFS or she would not have envy for the type of mandatory rest and solitude that we experience.

    Oh, also on the memory thing, a few nights ago I got confused over which pillow was mine. No biggie, you'd think; but my husband's pillow always has a plaid case and my pillow has a solid green pillowcase. I insisted he give me "my" (the plaid) pillow. He goes, "You have your pillow." I insisted the plaid one was mine and always had been. :confused: He looked a bit scared. I knew something was not right, then slowly it registered with me that indeed the solid-colored pillow was mine. Bizarre.

    Spooked my husband for a week. I told him the story Mary Schweitzer (sp?) recounted about the time she poured the coffee in the silverware drawer, thinking it was a coffee cup.

    Living with this illness really is an adventure, isn't it? All in all, I think we are a brave, strong lot. Is there a patting oneself on the back icon?:victory:
     
  10. Carrigon

    Carrigon Senior Member

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    Yes, that's it exactly. A loss of recognition. You simply don't recognize anything. Nothing looks familiar.

    I have Lyme, I've got HHV6, I've got alot of stuff. And I definitely get alot of neurological problems.
     
  11. SOC

    SOC Senior Member

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    Are you getting treatment for Lyme and/or HHV-6? My friend's symptoms got better with abx for Lyme (she's not cured) and my cognitive symptoms have improved dramatically after 8+ months of Valcyte for HHV-6.
     
  12. Enid

    Enid Senior Member

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    Yes that too can come to pass. When very ill knew "who I was" but not where. Brain so fuddled that perceptual "processing" failed. Scary indeed. But now on from that and recognitions returned. Take it slowly. And we have no real help here in the UK.
     
  13. SOC

    SOC Senior Member

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    It is indeed an adventure. I agree that we are a brave and resilient lot. Someday people will recognize that I think.

    I am continually amazed at how courageous my daughter is -- studying engineering while fighting this illness with it's odd, shifting, and debilitating symptoms. She doesn't lose heart; she doesn't give up.

    There are stories like hers all over the world.
     
  14. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Carrigon, I'm so sorry this happened to you. It is frightening. It certainly is not normal, but our brains are not normal and people who don't experience what we do are never going to understand. I was reading a book not long ago and became very puzzled by two little circles one on top of the other- could not figure that out at all. Finally I realized it was a number 8, the chapter heading. I was scared and it felt like I was losing part of me. I think sometimes we get periods of very little blood flow to parts of the brain- some of you who still have the cognitive ability to explain what happens, can you help?
     
  15. Athene

    Athene ihateticks.me

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    Very scary

    Hi Carrigon,
    I agree this is extremely scary.

    I am convinced it is a symptom specific to Lyme disease. At my Lyme clinic I met seven patients and they all had this problem. One girl started getting lost on her way home from school (after going there 3 years); I get lost on the way to the supermarket where I always go and I constantly get lost in my friends' houses, which I have been visiting for years.

    When I spoke to patients with XMRV at Meirleir's clinic they did not have this symptom.

    It is amazing how many healthy people will assure you they get the same, but they DO NOT: it is a pathological phenomenon.

    I have been taking choline (1000mg a day) for over a year, for memory and general cognitive functioning. After about a month I got amazing improvements in memory and this helped me compensate for the disorientation - I run a script through my head ("turn left at the second traffic lights then right at the bank" etc etc) to get myself where I need to go. I cannot find my way places the way normal people do but with my script I can. I am also getting far fewer of those terifying moments where you are sure you have seen some place before, but have no clue where the heck you are. Now that I have been on heavy antibiotic treatment for nearly four weeks, I am starting to see real improvements in my general sense of orientation. I don't know how to describe it other than that I am a bit less dependent on saying the directions in my head, I just sense where I am and need to go. I am still far from normal, but the improvement is definitely there.

    Another Lyme patient told me she has written direction for all the places she needs to go, taped up in her car, which I think is a great idea if you cannot get your memory good enough to remember the script.
    She also keeps a notepad in her handbag and always writes what she needs to do, before she leaves the house. It takes a while to get used to referring to it all the time, but this helps avoid that terrible experience of going some place and then wondering why the heck you went there.
     
  16. Carrigon

    Carrigon Senior Member

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    I'm not currently treating for Lyme anymore. I spent many years on all different antibiotics and herbals and tried a million things. Nothing worked on it. I was bit when I was eight years old and wasn't treated till I was twenty one, it was too late. I think alot of the damage I have is permanent.
     
  17. Athene

    Athene ihateticks.me

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    My Lyme doctor said he cannot cure about 30 percent of his patients, and these mostly have cytomegalovirus or parvovirus B19 as well as Lyme. There are some who have neither and he agreed that XMRV may be a third virus that makes Lyme incurable, at least with the drugs available today.
    He thinks if we had antivirals effective against these viruses it may be possible to cure these patients also.
    I am so sorry to hear you had no success dealing with your Lyme infection. I hope there may be some new treatment in the future.
     

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