Hi! thanks for such a great and technical post! You LTC was terrible, and makes mine sound like a walk in the park. I'm really happy that you are recovered, even if it took medication and lots of time!
I have a question regarding this... one of things that I have, and I did not know it might be related to this comedown, is like a dizziness that I sometimes get. I don't feel that I'm going to lose balance, but it's like my head starts spinning around. It lasts a couple of seconds, and then I'm OK. My boyfriend suffers from the same, he's been to doctors, and they can't pinpoint the cause, he's taking some medication now. He consumed MDMA for almost 10 years, without any issues (no LCT). My question is: could this be related? what is the name for this? It's not a headache, is it vertigo? Or how can I call it?
Hey nightELF
How's WoW nowadays? Haven't played regularly since 2011 - thinking of starting again, but I digress.
A quick warning: I talk too much, and this reply to your question admittedly is far longer than it should have been.
I sincerely apologize for this in advance, and have tried to include ample spacing in between sub-parts/subsections of what I'm blabbering about.
Here we go:
I believe I know exactly what you're talking about, because I also used to get it.
Out of nowhere, for no reason, at a completely random time, I would occasionally and suddenly begin to feel extremely dizzy. And the dizziness was so severe that vertigo would also accompany it a split second later.
It was as if someone had just - out of the blue - walloped me over the back of my head, and a concussion had just made its presence known.
That said, in contrast to an actual concussion, which I've experienced at least twice in my life, this sudden extreme dizziness and vertigo would always vanish after a couple of seconds. It was always the same (to the best of my knowledge).
I will never forget them. Very unique experience; very scary too when you're already anxious and prone to absolutely massive - completely meltdown mode - panic attacks.
The first few times I experienced them, I remember being so unsettled and so unprepared that I immediately freaked out to the point that I ended up having panic attacks soon afterwards. And as time passed, I guess I could say that I never really got used to immediately shrugging them off and moving on, because they were all so extreme. But at least I did remind myself - both in a journal I kept and in my head - to expect them to return at any moment and without warning.
It should be noted that these sudden but very brief bouts of extreme dizziness accompanied by moderately severe vertigo only began to manifest themselves after I became ill with this so called 'Long Term Comedown.'
Unfortunately, I don't know what caused them, but rather only that they eventually subsided in frequency as I slowly managed to mend after starting with the medications. And thank God that they're gone now, because I don't think I'd ever be able to get used to them - they're that severe.
I did notify my family physician, psychiatrist, as well as my neurologist about them.
As a result, over the course of ~4 years right after becoming sick with 'LTC' symptoms, I ended up - according to a very thick copy of my chart from my former family physician who retired in 2011 - having 4 X-Rays, 2 CT Scans (1 with dye present in my bloodstream), and 2 MRIs of my brain done to check for
absolutely anything abnormal, yet still
nothing was found.
And so I must say that a total of 8 medical images of my brain using 3 different techniques finding nothing wrong is rather puzzling because I frequent MDMA-related abstracts on Publisher Medical, and have read on there that long term, frequent, and heavy MDMA use has been shown to result in the appearance of noticeable brain lesions on medical imaging tests.
But considering that before becoming sick I had ingested well over 1,000 untested ecstasy pills over the course of a few years (which I'm not proud of at all), I wonder how in the world were no lesions found? All three doctors knew that I had used a shitload of ecstasy, and so they really tried to find any abnormalities, yet still failed to do so. And at least 2 X-Rays, 1 CT Scan, and 1 MRI was done before I even started using the Rx meds which helped me to recover - they too showed no abnormalities; no lesions; no damage of any kind.
Afterwards, all three of my doctors were pissed off at me when I thought they would be happy.
My neurologist claimed I was wasting her time. My psychiatrist said I made him look like a fool since he apparently preached to my neurologist about the brain damaging effects of ecstasy. And my family physician stopped believing I had even used any ecstasy to begin with! It honestly felt like a soap opera TV episode.
In the end (at present), I am left with the following speculations (and possible conclusions) in relation to the fundamental cause or source of the manifestation of 'LTC' symptoms:
- The diagnostic imaging tests performed on me weren't sensitive enough to detect any brain damage, and only a PET scan would have sufficed (highly doubtful).
- The Bluelighters on here who state that 'LTC' symptoms were "all in [my] head" are in fact correct (the mind indeed can, under the right/wrong conditions, play some extremely powerful life altering tricks on itself and its host body).
- The source of whatever caused 'LTC' symptoms to manifest themselves (at least in my case) was due to another vital part of the body (adrenal glands maybe?).
- My 'LTC' symptoms were actually due to a viral or bacterial infection (highly unlikely).
- My 'LTC' symptoms were a result of my body's natural defenses attacking healthy tissues/organs/glands/etc. (e.g. a type of autoimmune disorder perhaps).
In other words, all the research I've done over the past 10 years (minus a few months) appear to have left me with more questions than answers. Thank God that I'm not sick anymore - it's made all the difference in the world, even if I can't figure out exactly by what mechanism I became ill nearly 10 years ago.
P.S. Sorry for the long reply nightELF. I know I tend to overdo it, but I find myself unable to fully close this chapter of my life and to move on for good because of being unable to figure out just what exactly took place inside my body which gave rise to 'LTC' symptoms. And on top of that, the fact that people like yourself are also dealing with the same seemingly mystery illness and are severely suffering with something I know the pain of all too well makes the issue of not knowing much more important to get to the bottom of.
Hopefully that makes sense and answers your question, but if not, or if you wanna chat some more, feel free to PM me anytime. Take care serah
