"It's a poor sort of memory that only works backwards"

[picante]

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:

I've started that thread several times, but never read the whole thing. Maybe it's time for me to try N-acetyl glucosamine, since NAC (which "clobbers glutamate", according to @dbkita) is risky for me because I have lots of symptoms indicating that my transsulfuration pathway is way out of whack.

I just wonder if NAG is equally risky. It's not really anxiety that I'm trying to address; it's glutamate conversion problems (glutamate-GABA and glutamate-to-glutathione) and high glutamate levels.

 

[parabola]

I also suffer from this. Because of the nature of it(!) I can't remember how far back I've been having it, but I'm almost certain this started for me after glandular fever/ME symptoms began, as it would certainly fit with what my then partner thought were anxiety attacks, which never explained how they came out of nowhere and disappeared just as quickly.

For me, they will start with a tingling sensation/odour in my nose (like being hit on the nose!) Then a rushing sensation up my arms coupled with rising sensation in stomach and extreme nausea. I vomited once. Then I'll start recalling nonsensical dreamlike 'memories' for about 30 seconds, which I feel like I'm right on the verge of making sense of, and then it passes, and I'm left feeling exhausted. Some days the exhaustions so bad I'm wiped out on the sofa all day and time slips by without me realising. Other times it's so mild I hardly notice it. More often than not accompanied by mild-moderate migraines.

Mine usually occur for a few days each month, and it started to look like it was related to my cycle, but not always. I saw a good neurologist, negative EEG with sleep deprivation, hyperventilation and strobing, but she still didn't palm me off with anxiety and diagnosed TLE, wanting me to take lamotrigine. I declined but reading this has made me wonder whether I ought to try it:

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.

Just wondering what the rationale is for using it in ME? One of the reasons I didn't want to take it was because I was told it'd make me feel tired and washed out (the other being SJS)!

Hip I loved your positive spin on TLE too, had never really looked at it like that but yes, I've always had a spiritual type personality. I read about the hyperreligiousity associated with TLE a couple of years back and it made me not trust whether it was 'me' or the Illness, so I dissociated myself from those interests...

I also have childhood memories of a fever, and feeling like my hands were blowing up and shrinking over and over again to a horrible delirious rhythm inside my head... I'm reminded of it every time I hear Comfortably Numb!

 

[Daffodil]

@parabola Lamictal also has some antiviral properties and is used in depression

 

[Hip]

Just wondering what the rationale is for using it in ME? One of the reasons I didn't want to take it was because I was told it'd make me feel tired and washed out (the other being SJS)!

I would think the reason anticonvulsants may help in ME/CFS is because they lower neuronal excitability, and some such as Dr Cheney have speculated that neurons are over-excited in ME/CFS. The "wired" state of ME/CFS may be underpinned by too much neuronal excitability caused by excess glutamate.

Hip I loved your positive spin on TLE too, had never really looked at it like that but yes, I've always had a spiritual type personality. I read about the hyperreligiousity associated with TLE a couple of years back and it made me not trust whether it was 'me' or the Illness, so I dissociated myself from those interests...

Did you always have a spiritual disposition since childhood? And do you still have your spiritual disposition after you developed ME/CFS?

I found my spiritual stance has all but disappeared after developing ME/CFS. Somehow ME/CFS altered my brain or neurotransmitters such that I no longer see the world through spiritual eyes, and instead now see the world in a mundane, matter-of-fact way. I wish I could find a way to biochemically return my brain to its previous spiritual state.

 

[DeGenesis]

This reminds me of some strange experiences I had regarding my memory when I was in heavy benzo withdrawal.

One experience: I said something to my mom. What I said was immediately entered into my long-term memory. On one level I knew that I had just said this thing to my mom, but it felt like I had said it sometime in the past. So I asked her, "Did I just say x". And that was immediately entered into long-term memory. So I said "Did I just say, "Did I just say x"". And that was immediately entered into long-term memory. So I asked her..

That went on for a little while. I got up to a few did I just says. Partial seizure. I also floated. I smelled smells that don't actually exist. None of it was nearly as disturbing as the TLE and depersonalization stuff.

My brain is on the threshold often now, even though ostensibly I am not in benzo withdrawal. ME/CFS seems to bring excitation problems of it's own.

 

[MeSci]

I'm copying below extracts from a letter to a publication which I came across yesterday, which has some association with the problems with which I have been beset since March last year. It's from May 2009.


One difference is that unlike the writer, I still have M.E. and I'm unaware of many people recovering in ten years, especially at such an age. I searched for his name on the Net yesterday in the hope of contacting him, but couldn't find him. He would be about 81 now.

Another difference is that my condition seems to vary, currently being worse in the afternoon.


Letter


"The memory and M.E. feature in InterAction 67, p32, prompts me to mention my experience with M.E. because I think it just might provide a clue to unravelling the causes and mechanisms of this disease.

I had M.E. moderately severely for about ten years. As is often the case, it began with a fairly mild viral infection. Two years ago I had a very similar mild viral infection and when it cleared up I found my M.E. had gone. I now feel fitter and greater in stamina than I have for many years.

But...when I recovered from the infections I found that large swathes of my memory had gone. Being 73, I expect some problems with short-term memory loss but this was something else. The things erased from my memory mostly had a spatial element; I had to use a map to find places I had been to many times. Also, I now have no recollection of visiting places and doing things that I am assured have taken place. Events in my life from further back are intact; so my long-term memory seems unaffected.

In the February issue of New Scientist p 12, there is an article on Transient Epileptic Amnesia (TEA) and its sub-condition, Autobiographical Epileptic Amnesia (AEA). The symptoms described seem to fit my own with remarkable precision.

The inference is that at some stage in my recovery from M.E. I had some sort of epileptic fit. I wasn't aware of anything untoward and apparently this is quite normal for this type of seizure; it's possible to carry on quite demanding physical tasks while it is taking place.

As I understand it, epilepsy mainly affects the hippocampus area of the brain and it could be significant that some event has totally replaced my M.E. by AEA. It seems to me that this fact might provide a valuable clue in identifying the causes of M.E., perhaps making a cure for this dreadful disease a step closer."

 

[picante]

@MeSci, that is an intriguing hypothesis.

Kind of like an electrical storm in the hippocampus, and zappo! Hippocampus is rewired, ME gone, and memories, too.