The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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"It's a poor sort of memory that only works backwards"

Discussion in 'Cognition' started by picante, Aug 5, 2015.

  1. picante

    picante Senior Member

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    The title of this thread is a quote from the White Queen in Through the Looking Glass by Lewis Carroll. The White Queen is explaining to Alice that she remembers things before they happen (partly because she's living backwards through time, I believe).

    I've had a really bizarre, although infrequent, cognitive symptom since childhood (possibly Lewis Carroll is to blame). I call it déjà vu, but I don't think it's the classic, garden-variety déjà vu most people experience.

    Whew, it's hard to describe. My memory starts to output what it should be inputting. I remember thoughts and sensations that I'm experiencing while it's happening. This lasts anywhere from a few seconds to a minute or two. I also get slightly queasy and shocky. Homeopathic arnica helps, if I can remember to take it (I usually can't). It can also make me hypoglycemic, but not always.

    This morning I had this happen, and for a couple of hours afterward, I could not remember things that had become quite routine (such as taking zinc to balance potassium, something I do daily). There were just big blanks as I struggled to identify what I had lost from memory and what was still there. It was very disturbing.

    In my experience, most of the "lost" stuff should be back tomorrow.

    Does anyone else experience this? My ME/CFS came on at age 35 (triggered by EBV), but this weird symptom has been with me since about the age of 10. I've never known what triggers it, although I have been having frequent symptoms of high glutamate lately.
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member

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    That sounds like a version of déjà vu and I think it is quite normal - I certainly have it. I used to have it quite often when I was young but have only recently had it again occasionally (I am 65). If I understand you right it is not that you feel what is happening has happened before (despite that being impossible) but that you are remembering rather than experiencing what is happening now. It is a sort of like blowing the cover on déjà vu - proving that it is a trick of your brain rather than some sort of psychic trip to the past. My guess is that normal people only get it every few months at most but it would not surprise me if it was more common for PWME.
     
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  3. whodathunkit

    whodathunkit Senior Member

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    The Matrix has you, Neo. ;)

    I get deja vu and have had a few eerily literal precognitive dreams, but no physical symptoms attached. The physical symptoms you describe as going along with the "psychic" experience would concern me a bit, if it were happening to me. Have you always felt that way when it happened, even when you were a child? Or is the queasiness and possibly hypoglycemic feeling something that only started as an adult or when you get sick? Can you recall?
     
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  4. picante

    picante Senior Member

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    Thanks, @Jonathan Edwards, it is reassuring to know that you've had this happen, too.

    Exactly. The usual thought sequence goes something like this:
    OMG, this same exact series of events has happened to me before!
    No, but some similar events have. Also, this is a déjà vu, because I'm getting a tad dizzy.
    Oh crap, now I'm having a déjà vu about having a déjà vu. What the h... was I trying to do when this hit?
    I'll go lie down until my memory stops going in circles, aaaagghh. Didn't this happen during the night, too?​

    Déjà vus throw me into the kind of confusion you would experience in a cognitive hall of mirrors. Like seeing the same thing reflected over and over no matter which thoughts and events I'm experiencing.

    Since this is my interpretation of the experience, I'm not disproving psychic trips or anything equally paranormal. There are more things in heaven and earth, Horatio, than are dreamt of in paranormal philosophy.

    This does bring up the strange business of time, though, which apparently is not linear. Even though our brains are designed to perceive it linearly (sequentially), it has more than one dimension. So says the latest research in physics, anyway.

    What concerns me is the temporary amnesia and the physical symptoms, as @whodathunkit pointed out. Yes, I've commonly had the weakness and lightheadedness, with hypoglycemia afterwards. Since childhood. I used to have these in clusters when I was a teenager -- I'd have 4 or more in a day, then a couple the next day.

    We did not realize this at the time, but we were drinking perchlorate in our municipal water supply, both at home and at school. Maybe the cold war poisoned my brain. (Yeah, this was the 60s & 70s, and it was a defense contractor.) The déjà vus started within a couple of years of our moving to Rialto, CA, now a Superfund site.
     
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  5. whodathunkit

    whodathunkit Senior Member

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    @picante: Wow. That's a hell of a story. I'm so sorry that happened to you.

    Do you get migraines, too?
     
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  6. picante

    picante Senior Member

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    Thanks, @whodathunkit. Just a quick Google search on perchlorate in municipal water supplies will tell you that there are millions of Americans in the same boat. They made a lot of rocket fuel for those damn ICBMs. It was dumped in open pits back then, and the technology needed to detect it in water was not available until 1997. Meanwhile, millions developed thyroid disease and thyroid cancer. Cold War Karma right back at US.

    As for migraines, yes. I developed one-sided "hormone headaches" in my 30s. Saw the chiropractor a lot for the neck spasms, which triggered them. Then I started getting them from RBGH in conventional dairy products. They aren't classic migraines; they are toxicity headaches. In my 30s & 40s I couldn't seem to detoxify my own hormones (poor methylation?). Now I'm through menopause, but I can trigger one of them by eating too many thiols.

    The neck spasms can usually be relieved by potassium or zinc, depending on which side they're on. I've learned that since I've been here on PR.
     
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  7. taniaaust1

    taniaaust1

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    I don't get how you described but I do get what I call "memory holes" with my ME and yes that is highly disturbing. Unlike in your case, these holes in memory can also in my case last some time (though usually only short). Back when I was still working, I once forget where I'd been working for years and hence then couldn't even go to work (well I could of if I phoned my boss to ask him where I worked!!! I was too embarrassed to phone and ask that so just didn't show up for work).

    What is most disturbing about this aspect of my ME is these memory holes or drop outs can occur at any time and hence can put me into dangerous situations with them as Im let not capable of things due to them.

    Another memory hole I got one time was I forgot doors are used to get out of rooms and hence got actually stuck in a room, looking at the roof for a way out. Another time I couldn't cook myself toast for breakfast as I forgot what a toaster looked like or was, I knew there was something called "toast" I had but had an info hole on how to make it. (not a problem to me now as I don't eat toast).

    But anyway, any simple thing can actually like disappear from my memory leaving me with an info gap. I nearly got in trouble with the police one day as I had a memory drop out one time and some security then ended up getting involved as I busted something in a panic due to the drop out and my inability to be able to function and know what to do due to the memory drop out (I couldn't remember how to get my car out of car park and busted a boom gate in the process, I couldn't remember ticket machines). A friend had to come and get me and get me out of trouble with the security people.

    Another time I had a memory drop out at a petrol station/ gas station and couldn't remember how to put petrol in a car. I had to stand there and watch everyone else do it and copy them hoping I was doing the right thing (I didn't even remember what was the right thing to put into car, I just remembered the car had to be like fed with something there and knew my car was "empty").

    Then I drove off without putting the cap on and lost it (and then realised I didn't know where I lived so was by this time crying, having no idea what to do and hence feeling very vulnerable).. once again someone had to come to my aid so I could safely get home (my home was only 3 minutes drive away too).

    I hate memory drop outs, they completely disabled me and can make me very unsafe to go out alone even if that was physically possible for me to do with the severe ME. I do though nowdays get far less of those then I used to do.
     
    Last edited: Aug 8, 2015
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  8. picante

    picante Senior Member

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    @taniaaust1, those episodes sound horrible, like temporary dementia. A bit like my dad, who has had severe short-term memory loss. It was no longer safe for him to live alone. But he's in his 80s.

    Have you noticed anything that triggers those?
     
  9. Hip

    Hip Senior Member

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    @picante, have you ever considered a diagnosis of temporal lobe epilepsy (TLE)? Déjà vu can be one of the symptoms of TLE, along with various other unusual mental phenomena.

    Here are some of the symptoms of temporal lobe epilepsy that can occur during a temporal lobe seizure:
    Note: the adjective "ictal" means "related to a seizure". So "postictal" means after the seizure has occurred.

    If temporal lobe epilepsy is the cause of your déjà vu, then your experience of déjà vu is actually just a manifestation of the seizure in progress. The transient amnesia you experience after the déjà vu is also consistent with it being caused by a temporal lobe seizure. See: Transient epileptic amnesia - Wikipedia.

    People with TLE may have a spiritual type of personality; see: Finding God in a seizure: the link between temporal lobe epilepsy and mysticism. Here is an extract of that article:

    It is thought that Lewis Carroll may have had temporal lobe epilepsy, because his descriptions of people shrinking or getting larger in Alice in Wonderland are very reminiscent of the visual distortions of shape, size and distance of objects that can be experienced during a TLE seizure. See Alice in Wonderland syndrome.

    Median temporal lobe epilepsy has been linked to HHV-6B infection of the brain.
     
    Last edited: Aug 9, 2015
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  10. picante

    picante Senior Member

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    Well, look at that, @ahmo!

    @Hip, she came up with the same thought just a couple days ago. No, I had never really heard about temporal lobe epilepsy until ahmo mentioned it. It looks like a strong possibility. I laughed loudly when I saw "Alice in Wonderland syndrome", how apt! Fortunately I don't have this symptom, which would be pretty dysphoric:
    https://en.wikipedia.org/wiki/Dysmetropsia

    I have the olfactory hallucinations, the first three psychic phenomena listed in your post, and the autonomic phenomena, although it's not epigastric fullness; it's abdominal helium-balloon, and I have it daily without any seizure-type phenomena.

    I was looking for a glutamate connection, and I found it:
    http://www.ncbi.nlm.nih.gov/pubmed/18226171
    Recently I've begun to consider high glutamate as the possible trigger for that helium-balloon symptom. I often feel like I'm going to pop. It's usually accompanied by an intense grogginess (somebody drugged me; I'm in Dorothy's poppy field).

    So it's a combination of Dorothy and Alice. Oh, boy :balloons:! And yes, I've also had the experience of oneness -- up high in the Sierra Nevada, when I was 18, and it was intensely euphoric for an eternity that might have lasted 5 minutes (objectively speaking, whatever that means).

    I wonder how I would get a diagnosis. (I wonder whether I should, too. Mainly I just want to stay out of harm's way.)
     
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  11. ahmo

    ahmo Senior Member

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    @picante I bet you'll be better served by continuing your research in this new direction, like the glutamate connection, than going through the hoops trying to get a diagnosis. Unless you find that there's some magic life-changing drug.
     
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  12. Hip

    Hip Senior Member

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    Surprisingly enough, those Alice in Wonderland syndrome symptoms, which are called micropsia (where everything seems smaller than usual) and macropsia (everything seems larger than usual), can be quite fascinating rather than unpleasant. I used to experience micropsia and macropsia on a regular basis — almost nightly — as a child, usually while in my bed, just before going to sleep. Though as I grew older, these experiences slowly disappeared.

    So I suspect I also likely have (or at least had) temporal lobe epilepsy (TLE). Though it's only actually in the last few years that I learnt about this connection between Alice in Wonderland syndrome and TLE. I was very excited about discovering this, and that's why I now know a little bit about TLE.

    The whole subject area of TLE is quite fascinating. I always had a bit of spiritual type personality, and was naturally interested spiritual subjects, consciousness exploration, paranormal research, etc. I never questioned why I had these interests. But now I realize this TLE connection may well explain it.

    So TLE, or temporal lobe electrical instabilities, probably endowed me with this spiritual disposition. Even if I no longer seem to have any seizure manifestations (I no longer get Alice in Wonderland syndrome), I think that just having temporal lobe instabilities (without seizures) can still impact upon mental state, and energize the mind spiritually.

    Michael Persinger has for decades being doing very interesting research, where he takes normal healthy subjects, and "tickles" their temporal lobes using oscillating magnetic fields generated by a helmet placed on the subject's head (called the God helmet). Persinger is often able to evoke spiritual / timeless / presence-of-God experiences in the minds of these people. Which shows how electrical activities in the temporal lobes are able to create these transcendental states.

    I don't incidentally think that just because these timeless / presence-of-God experiences are evoked by electrical activities in the temporal lobe, that that somehow explains away God, or explains away states of consciousness that transcend time, as a fabrications of the mind; it could well be that these abnormal seizure states in the brain do physically have a timeless quality to them; if they involve quantum phenomena, then the thermodynamic arrow of time does not apply to such phenomena, and so these brain states may well physically possess non-ordinary temporal qualities, meaning that the timelessness subjectively experienced during temporal lobe seizure is genuine, a real McCoy encounter with the eternal.

    I never experienced any other symptoms of TLE as a child, apart from (and this is going to sound very weird and kind of embarrassing) seeing some strange gnome hallucinations, which I describe in this post. My assumption is these hallucinations that I frequently saw were also caused by TLE.



    For me personally, if TLE is indeed the reason why I have a spiritual-type disposition, then I would consider this more of a gift than a curse. In other words, I wouldn't like to lose that disposition. Unfortunately though, since developing ME/CFS, much of my spiritual disposition has in fact vanished: ME/CFS seemed to move my mind away from the sacred end of the spectrum, towards the mundane secular end. Possibly ME/CFS has somehow dampened the electrical "zinginess" in my temporal lobes, which then put an end to much of my spiritual mind state.

    I wish my spiritual energies were still there, because I would have loved to further explore them, especially in the context of now knowing that they might be underpinned by TLE or temporal lobe instability; knowing this only adds to the interest, as I always enjoyed exploring spiritual matters from both the objective scientific and the subjective experiential angles.

    There's quite a bit of literature about the connections between TLE and mysticism, ecstatic states, and so forth. Professor Vilayanur Ramachandran (University of California, San Diego) has a lot of interest in this area.

    So you might want to look upon TLE in the same light: that it may bring advantages as well as disadvantages, and to an extent, the influence of TLE and temporal lobe instability may be part of who you are, part of your personality. I am not sure how problematic these déjà vu and amnesia periods are for you, but if you do see them as a problem, there are some treatments you could try.



    I think you can get EEG tests (which measure brain electrical activity) to help diagnose TLE, but I am not quite sure how this works. I have not looked into this myself, because I am primarily focused now on trying to ameliorate my ME/CFS.

    In terms of treatment, anticonvulsant drugs can help TLE. Anticonvulsants have a seizure-suppressing effect. One commonly-prescribed anticonvulsant is Lamictal (lamotrigine), and this is also one of the drugs Dr Jay Goldstein would use for his ME/CFS patients. I bought some Lamictal online not so long ago, and I tried very low dose Lamictal myself, 12.5 mg daily, and it helped my ME/CFS a bit, but the benefits seemed to wear off after a few weeks.

    A ketogenic diet is an established dietary treatment to help reduce the number of seizures you get.

    Glutamate is an excitatory neurotransmitter, and plays a role in the triggering and spread of seizures. So possibly anything that reduces extracellular glutamate levels might help prevent seizure (but this is just my own hunch). I was experimenting recently with high dose amoxicillin (an antibiotic), which can significantly lower brain extracellular glutamate (see this thread).
     
    Last edited: Aug 9, 2015
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  13. picante

    picante Senior Member

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    I have no faith in pharmaceuticals, other than in their ability to poison people over time. That's life-changing, all right!

    I was thinking primarily that if I wound up in the hospital for whatever reason, they would need to know to keep an eye on glutamate/sulfites/ammonia/peroxynitrite and not aggravate existing problems.
     
    Last edited: Aug 10, 2015
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  14. picante

    picante Senior Member

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    Your whole post is food for thought, but this sent me off to find out about the thermodynamic arrow of time, which I had not heard of, although I'm aware that the 2nd law of thermodynamics does not apply in an open system. Which is why you can have overunity energy devices (more energy out than in), using magnetic fields.

    Right now I need to decrease entropy in my brain and gut, :D. And thanks for all the links. I'm still exploring them.
     
  15. Hip

    Hip Senior Member

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    Unfortunately there's no such thing. There is certainly though no shortage of crackpot inventors who are convinced they have build one.
     
  16. ahmo

    ahmo Senior Member

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    Good luck with that.:rolleyes:
     
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  17. picante

    picante Senior Member

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    That is a belief. You would have a tough time promoting it to these folks: http://peswiki.com/index.php/Directory:Suppression

    But that's a whole other discussion. Let's not clutter my thread, please, with that.
     
  18. picante

    picante Senior Member

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    I found this on glutamate and seizure-like activity in ME/CFS, on Cort Johnson's website, posted by Marco:

    Read more: Glutamate – One More Piece in the Chronic Fatigue Syndrome (ME/CFS) Puzzle? The Neuroinflammatory Series Pt. II
     
  19. picante

    picante Senior Member

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    Since you posted this, I've been thinking about my own experience of uninvited "altered states", for lack of a better term. Some have had a transcendental quality, but others are downright dysphoric, and I'm wondering whether this has to do with the glutamate/GABA balance. The déjà vus are not fun, since they seem like a cognitive hall of mirrors, and I have to just wait until the exit appears.

    Since my metabolism crashed at the onset of my ME/CFS, I've had those helium-balloon reactions to foods, which I've always thought were neurological, since the food is in my stomach when they start, not in my gut. Ten years on the anti-candida diet did not help this. What finally helped was getting my hypothyroidism diagnosed (after 11 years of being hypo). When I started taking T3 (another 3 years after the diagnosis), that was the first thing that had ever helped.

    Another piece of the puzzle falls into place:
    Thyroid hormone increases astrocytic glutamate uptake and protects astrocytes and neurons against glutamate toxicity.
     
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  20. Hip

    Hip Senior Member

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    Yeah I read that article, it's very good. Along a similar line, you may find the supplements I outlined on this thread of interest:

    Completely eliminated my severe anxiety symptoms with three supplements!

    At one stage a few years ago, I was suffering from severe anxiety (a common comorbidity in ME/CFS). My hunch was that the anxiety was caused by excess extracellular glutamate produced by brain inflammation. By taking supplements like N-acetyl-glucosamine which I think lowers brain inflammation, my anxiety was greatly reduced. You might want to look into supplements that lower brain inflammation, as this may be a good way to lower glutamate.



    I also often experienced lots of dysphoric periods. Usually, the first 3 hours in the morning after waking up would be severely dysphoric. This would occur almost every day. In these first 3 hours, the world would seem unbelievably bleak. Then 3 hours later, my dysphoria would clear, and I'd be fine, and even in good and happy mood. I was never able to work out why this dysphoria nearly always occurred first thing in the morning, but because I knew it would pass after a few hours, I would try not to focus on it, and wait for it to clear, which it always did.

    Dysphoria is the correct term for this bleakness of outlook I experienced: dysphoria differs from depression in that there is no loss of self esteem in dysphoria, whereas there is in depression.
     
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