Sorry, guys, didn't mean to make this so long!
Koan, your story is so familiar it's eerie.
When the whole ME/CFS started in late August '92, I had some odd vertigo and "hyper-acute" visual phenomena, especially during or after exertion...A week or so later while laying in bed at night I was hit very suddenly by a bizarre, powerful experience of whatever Fresh eyes, you, and I have been describing (up til now I've borrowed the term "derealization" or "depersonalization" from a psychiatry, but that's a vague term linked to certain psychiatric disorders...does anyone have a better idea for what we should call it here?)
I was totally unfamiliar with whatever it was, and although I vividly remember it, words kind of fail to describe it accurately. I definitely felt something that I think you guys would call "existential dread" (btw, could you clarify what you mean by that?, if its not too upsetting). The worst was feeling that when I looked inside myself, instead of finding what I thought of as the inner self or the (usually taken-for-granted) solidity of one's own existence, I felt as if I was (inwardly) looking down into a black void; I could feel the "Nothingness" of it... it was just down to my anchorless thoughts, and that void; nothing else existed and there was no substance to anything.
I did anything I could to combat this 'feeling', but in the end I think it just went away on it's own after about an hour. Nothing like that happened again from that point until about three years later, though I remained haunted by the experience.
In '95 it started after I was hospitalized for 10 days while my crazy Infectious Disease doc had everybody on staff run tests on me (I had developed a weird respiratory problem); I got virtually no sleep for those ten days and caught a terrible flu and was being treated with IV antibiotics for Lyme (though my tests were negative). It also turned out at the same time that I had an acute HHV6 infection, as tested by Ablashi at the NIH. Somehow the combination set off the first anxiety attacks I had ever experienced.
I didn't want anyone to think I was crazy, and was too scared and ashamed to see a psychiatrist. But when I finally did, he diagnosed me with an "iatrogenic" (medically induced) "anxiety reaction with a post-traumatic element". He felt that the hospitalization (which included a full-out CP stress test) was like "Vietnam" especially for someone with CFS, hence the cumulative traumatic effect. He didn't think much of the coinciding HHV6 infection. The 'derealization' that now seemed constant at a low level and acute at others was typical of strong anxiety reactions, he said, though he had no explanation for the first experience three years previous (he thought it unrelated and, like a couple other doctors, blamed it on two GI meds I was taking back then, Reglan and Zantac).
Whatever...so began a long descent into hell, like Koan had described. I found that the more intense 'derealization' events were set off when I was exposed to too many external stimuli, like watching more than a few minutes of TV, reading too long, or going to an unfamiliar place with too many things to look at or too many noises..Being unusually exhausted or staying up too long could do it too, and any drug with a strong sedative effect (like Trazadone, which I tried just once for sleep) would as well.
Interesting what you found with Xanax, Koan; for me, Xanax didn't help with the 'derealization', but Ativan (another short-acting benzo) did -- within a short window. I found that if I took it before watching TV or other activities with lots of visual stimulation, I could watch much longer before it acted up. Unfortunately, there was a limit to what Ativan could do, and overtime of course Ativan lost its effectiveness. Also, for me, the benzo doesn't stop the symptom so much as it "anaesthetizes" me to its effects, allowing me not to care about it (I've noticed the same about its effect on anxiety and about antidepressants' effects on depression...they don't get rid of the stuff but they make me unable to care or think about them much).
Eventually over the years (not through any medicines) the anxiety got much, much less and the 'derealization' or whatever became more manageable for whatever reasons, as I mentioned in a previous post. An intense "episode" hasn't happened in a long time.. though it never feels too far away. But I still feel "disconnected from myself" at a deep level (over the years i've also described different flavors of it as feeling "dislocated", "superficial", or "paper-thin").
So is it just from an ongoing anxiety disorder, even if it preceded the anxiety at least once? Or is it something from the ME/CFS? Or both? I don't know; I just want it to go away!! I understand perfectly what you said about the fear of it, and trying to avoid it.
I guess my greatest fear now is that my normal functioning, my feeling of having "depth", will never return due to some sort of neurological damage by a virus or whatever. The idea is chilling, even difficult to write down (and I hope in so doing I don't scare anyone else!), but I do know how amazingly plastic the brain is and how capable it is of re-routing its pathways, and all evidence and my intuition suggest that it's not physical damage but rather a system malfunction. The triggers are too various for it to be a focal, "lesion"-type thing.. And I'm not giving up on the idea of gentle meditation in whatever way works to 'rehabilitate' the brain...but I'll have to tread gently, I guess.
DrYes, you are so not alone!
You have no idea what that means to me, Koan! I was kind of worried when I wrote yesterday that I would as usual be the only one who's had such symptoms, but I guess not.. which is both comforting but also really saddens me, as I hate the thought of any of you suffering this. Great big hugs to you Koan, and to Fresh eyes...unfortunately, I know what you've been through!
I wanted to share it with all of you because maybe it will work for others here as well. This doesn't work for chronic pain though.
