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full recovery, no joke


lucky_guy
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hey everyone, i use to read this forum back in the day quite a bit, i had hppd for like 4.5 years, and after experiencing a strange incident that felt somewhat like a stroke, in which i had no ability to hold my neck upright, as well as an inability to walk in a straight line when my upper body was tiled to the right or left (i would literally veer off into the direction i turned my upper torso towards. strangely enough, the next day my hppd symptoms were completely relinquised, no static, afterimages tracers, depersonalization, anything! the only thing i saw were an extremely subtle red and blue set of very fine dots in the dark, pitch dark, i use to see these as kid. in addition i had very prominant white star like visual phenomenon occur, not visual snow at all, very different... it's important to note that this occured 2 weeks before the onset of hppd/migraine aura 4 years ago. whats idiosyncratic about my case is that i had never used serotonergic drugs, antipsychotics priors to getting hppd... i did afterwards. the only drugs i had used beforehand were pot, adderall, and dexedrine ( i  have severe adhd).

 

anyways, i have quite a bit of education in health care... so i started to think to myself, could this be a vestibular problem, perhaps, which would also have caused my balance etc. to have gone the night i thought i may have had a stroke.

 

strangely enough, i noticed that my jaw wasn't quite level, i had for years had a pressure in my ear that was unrelenting, but thought nothing of it... but i had to test something out... strange as it sounds i literally pounded my left jaw 5-10 times, until i heard a crack, and sharp pain in my right ear drum... my vision improved over the next day...

 

even 2 weeks or so, my vision goes somewhat back to hppd type phenomena (very mild vs and much milder negative afterimages... annoying, but nowhere near the crap i had before)

 

i would literally do the same thing, the right jaw popping from, now, much lighter force... but stille, the right ear drum pops...

 

now get this, when the snow comes back even mildly, i, to a much much smaller extent, will very heavily apply pressure to one side, as well as a bone above the jaw, level to my ear, just in front of it, i can feel a very mild cracking sensation... but even moreso, when i shit it back and forth, the snows density worsens or improves, within 20 or so seconds.

 

even stranger so, this only works when i take lamictal... ive tried this when i stop taking lamictal for 4 or 5 days, and theres an improvement, but nowhere near the 99 percent remission when i do the above and am on lamictal (i'm very very bipolar as well as adhd... so i take 500 mg lamictal daily (200 mg recomended for seizures, 400 for bipolar, with some wiggle room based on clinical judgement)... absolutely bizarre stuff.

 

finally, after i crack my jaw, so to speak, it takes about a day or so to totally remiss again... and up until, i feel this intense pressure in my ear drums... when i hold my nose and blow to relieve the pressure, as one may do when diving in a pool... the right ears pressure is relievd immediately... while the left ear persists...

 

now, getting to the weird point, when i take dexedrine, the pressure in both ears dissipates extremely quickly, ditto with adderall, and the remission is much faster, like an hour (versus like 24... where, no joke, it just takes longer for my left ear pressure to equilibreate with my right... wtf eh)

 

i know this sounds fucking ape shit crazy... but for me it was a totally vestibular thing... totally of the wall stuff.

 

to give some history, ive taken valproate, topimax, lamictal (3 times... always helped for depersonalization), levitiracetam (keppra (helped somewhat for depersonalization), oxycarbemazapine, carbemazapine, acetozolamide, furosemide, and of course,  clonazepam(worked perfectly, perfect... at 3mg, i only came off because i do very very cerebrally challenging work, and the memory problems were untolerable) , dexedrine, adderall (both worked for depersonalization, as well as reducing the distraction of hppd, which for me, is worse because i have adhd (worked perfectly, perfect... at 3mg, i only came off because i do very very cerebrally challenging work, and the memory problems were untolerable)

 

i should mention my dosing, was at times obscene, keppra at 4000 mg, lamictal at 800 mg, clonazepam at 3mg-4.

 

i never got to try comt inhibitors... but i wanted to insanely,, because i was suspected to have a v158m mutation in comt... it creates really idiosyncratic effects, different phenotypes that are highly, specific i suppose, and which are extremely represent on my mothers side, all of her 7 bros and sisters have schizophrenia, adhd, bipolar... my grandma is schizophrenic... im totally bipolar and very adhd... but also have some other very unique sensory-processing anomalies... i could get into more detail, but for brevities sake i wont.

 

i really don't know what to say, this sounds pretty effing insane... especially since clonazepam worked perfectly... but the effects of hallucinagens on decreasing comt activity, is the same process that my highly suspected mutation does (my psych specializes in developmental disorder, adhd etc. and she suggested it, based on 2 years of weekly visits..

as well, i never took mdma, ecstasy, lsd, any hallucinogen at all... ssris... nothing, just a sudden onset... hmmm, halucinogens have the same effect as the genetic variant... shit eh

 

. yeah, i dont know, hope this helps in some way... i hate hppd, it fucked my life entirely for 4 years... i was an elite, top student, and i dont mean good, i mean, inanely good, i wont get into specs to protect my privacy... but hppd just made it so i was too distracted and honestly, fucked, to perform at that level, i could think at the same level, but acting out and doing things that exhibited the stuff going on in my head, was just fuck, undoable, it was brutal just having conversations (until i got on clonazepam... but fuck the cognitive effects sucked), trying to not be insanely depersonalized and really, just fucked... i'd gotten so pissed... like i would rather have had fucking cancer... because at least it could be treated... suffering is no biggie... the biggie is the loss of hope, especially since i had a redicioulous ammount of potential...

 

i've been symptom free 5 months, clonazpeam free for 9 months (im on lamictal and adderall xr and dexedrine sr, now, but thats for other things ( id take the lamictal anyways for bp)) and wow, no side effects, and no hindrance... in 5 months... my life, is wow, amazing... so god, from experience, i hope this helps someone... i know there's only 2 cases of people being symptom free on lamictal... so i wanted to share my experience... with the strange caveat of the vestibular stuff.

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When structural issues have been linked to problems, like migraine to neck issues.  But HPPD to jaw and ear is a new one.  Glad it worked for you.

 

Have you tested rs4680 for your suspected COMT issue?  If insurance won't do it, try 23andme.com.  I was skeptical but tried it and learned a lot of good stuff.  You might too.

 

Enjoy being HPPD free ...

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hey, thanks a lot, i'll get that test done for sure!

 

i hope that info can somehow help someone some way.... the only strange thing though is i was reliant on clonazepam forever, it worked perfectly, which is the norm by far... so there's something receptor based etc. going on... maybe secondary to physical issues, who knows, also... if i come of lamictal right now, after about 3 to 4 days, it comes back again... so obviously there's more to it than structural things... but lamictal, in my mind, is far more preferable than clonazepam.... keppra also worked minorly when i was on it, as did lamictal (i had only previously taken it with clonazepam... and iot helped mostly with depersonalization) so there's definately more than meets the eye... in the end though lamictal is very tolerable, and i take it anyways, definately take it over benzos... coming off clonazepam is just a mindblowing experience... awful... anyways, thanks! and cheers

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It would be ideal if you didn't need to take COMT inhibitor since they can be hard of the liver.

 

You are taking ADD/ADHD meds which boost dopamine.  Have you tried other dopamine agonistic meds?  I've worked with Wellbutrin, Sinemet, Selegiline, Requip, and (currently evaluating) Amantadine.  Sinemet has been a life saver and the best of the bunch.

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This is interesting.  I have TMJ issues.  I've never sought treatment because it's fairly mild, but when my jaw muscles swell up that causes migraines, which worsen my HPPD symptoms.  I always just though the symptom spikes were due to the stress/headaches and I never considered that my jaw/inner ear might actually be the problem.  I'm going to bring this up with my doctor.

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hey everyone, i use to read this forum back in the day quite a bit, i had hppd for like 4.5 years, and after experiencing a strange incident that felt somewhat like a stroke, in which i had no ability to hold my neck upright, as well as an inability to walk in a straight line when my upper body was tiled to the right or left (i would literally veer off into the direction i turned my upper torso towards. strangely enough, the next day my hppd symptoms were completely relinquised, no static, afterimages tracers, depersonalization, anything! the only thing i saw were an extremely subtle red and blue set of very fine dots in the dark, pitch dark, i use to see these as kid. in addition i had very prominant white star like visual phenomenon occur, not visual snow at all, very different... it's important to note that this occured 2 weeks before the onset of hppd/migraine aura 4 years ago. whats idiosyncratic about my case is that i had never used serotonergic drugs, antipsychotics priors to getting hppd... i did afterwards. the only drugs i had used beforehand were pot, adderall, and dexedrine ( i  have severe adhd).

 

anyways, i have quite a bit of education in health care... so i started to think to myself, could this be a vestibular problem, perhaps, which would also have caused my balance etc. to have gone the night i thought i may have had a stroke.

 

strangely enough, i noticed that my jaw wasn't quite level, i had for years had a pressure in my ear that was unrelenting, but thought nothing of it... but i had to test something out... strange as it sounds i literally pounded my left jaw 5-10 times, until i heard a crack, and sharp pain in my right ear drum... my vision improved over the next day...

 

even 2 weeks or so, my vision goes somewhat back to hppd type phenomena (very mild vs and much milder negative afterimages... annoying, but nowhere near the crap i had before)

 

i would literally do the same thing, the right jaw popping from, now, much lighter force... but stille, the right ear drum pops...

 

now get this, when the snow comes back even mildly, i, to a much much smaller extent, will very heavily apply pressure to one side, as well as a bone above the jaw, level to my ear, just in front of it, i can feel a very mild cracking sensation... but even moreso, when i shit it back and forth, the snows density worsens or improves, within 20 or so seconds.

 

even stranger so, this only works when i take lamictal... ive tried this when i stop taking lamictal for 4 or 5 days, and theres an improvement, but nowhere near the 99 percent remission when i do the above and am on lamictal (i'm very very bipolar as well as adhd... so i take 500 mg lamictal daily (200 mg recomended for seizures, 400 for bipolar, with some wiggle room based on clinical judgement)... absolutely bizarre stuff.

 

finally, after i crack my jaw, so to speak, it takes about a day or so to totally remiss again... and up until, i feel this intense pressure in my ear drums... when i hold my nose and blow to relieve the pressure, as one may do when diving in a pool... the right ears pressure is relievd immediately... while the left ear persists...

 

now, getting to the weird point, when i take dexedrine, the pressure in both ears dissipates extremely quickly, ditto with adderall, and the remission is much faster, like an hour (versus like 24... where, no joke, it just takes longer for my left ear pressure to equilibreate with my right... wtf eh)

 

i know this sounds fucking ape shit crazy... but for me it was a totally vestibular thing... totally of the wall stuff.

 

to give some history, ive taken valproate, topimax, lamictal (3 times... always helped for depersonalization), levitiracetam (keppra (helped somewhat for depersonalization), oxycarbemazapine, carbemazapine, acetozolamide, furosemide, and of course,  clonazepam(worked perfectly, perfect... at 3mg, i only came off because i do very very cerebrally challenging work, and the memory problems were untolerable) , dexedrine, adderall (both worked for depersonalization, as well as reducing the distraction of hppd, which for me, is worse because i have adhd (worked perfectly, perfect... at 3mg, i only came off because i do very very cerebrally challenging work, and the memory problems were untolerable)

 

i should mention my dosing, was at times obscene, keppra at 4000 mg, lamictal at 800 mg, clonazepam at 3mg-4.

 

i never got to try comt inhibitors... but i wanted to insanely,, because i was suspected to have a v158m mutation in comt... it creates really idiosyncratic effects, different phenotypes that are highly, specific i suppose, and which are extremely represent on my mothers side, all of her 7 bros and sisters have schizophrenia, adhd, bipolar... my grandma is schizophrenic... im totally bipolar and very adhd... but also have some other very unique sensory-processing anomalies... i could get into more detail, but for brevities sake i wont.

 

i really don't know what to say, this sounds pretty effing insane... especially since clonazepam worked perfectly... but the effects of hallucinagens on decreasing comt activity, is the same process that my highly suspected mutation does (my psych specializes in developmental disorder, adhd etc. and she suggested it, based on 2 years of weekly visits..

as well, i never took mdma, ecstasy, lsd, any hallucinogen at all... ssris... nothing, just a sudden onset... hmmm, halucinogens have the same effect as the genetic variant... shit eh

 

. yeah, i dont know, hope this helps in some way... i hate hppd, it fucked my life entirely for 4 years... i was an elite, top student, and i dont mean good, i mean, inanely good, i wont get into specs to protect my privacy... but hppd just made it so i was too distracted and honestly, fucked, to perform at that level, i could think at the same level, but acting out and doing things that exhibited the stuff going on in my head, was just fuck, undoable, it was brutal just having conversations (until i got on clonazepam... but fuck the cognitive effects sucked), trying to not be insanely depersonalized and really, just fucked... i'd gotten so pissed... like i would rather have had fucking cancer... because at least it could be treated... suffering is no biggie... the biggie is the loss of hope, especially since i had a redicioulous ammount of potential...

 

i've been symptom free 5 months, clonazpeam free for 9 months (im on lamictal and adderall xr and dexedrine sr, now, but thats for other things ( id take the lamictal anyways for bp)) and wow, no side effects, and no hindrance... in 5 months... my life, is wow, amazing... so god, from experience, i hope this helps someone... i know there's only 2 cases of people being symptom free on lamictal... so i wanted to share my experience... with the strange caveat of the vestibular stuff.

Interesting. Serotonin (and noradrenaline) have regulatory roles in the vestibular system, so perhaps altering the physiology of vestibular-associated parts could indeed affect serotonin levels..

Check these out...

http://www.tinnitusjournal.com/detalhe_artigo.asp?id=251

http://www.ncbi.nlm.nih.gov/pubmed/20847126

http://www.dizziness-and-balance.com/treatment/drug/drugrx.html

[from the last link]:

 

Serotonin receptors are also found in the vestibular nerve, but the functional significance of this uncertain (Ahn and Balaban, 2010). Withdrawall from serotonergic drugs, such as SSRI antidepressants, is commonly associated with vertigo. It has been speculated that this is due to loss of inhibition of glutamate -- in other words, increased vestibular responses as glutamate is excitatory (Smith PF, Darlington CL, 2010).

Have you ever seen a chiropractor? I am currently doing work with one to see if I can improve my condition. I was born with hydrocephalus so I have a shunt installed in the right side of my head. This has caused a life long head tilt. After reading a post on here about massaging the sternomasticoid muscle and finding symptom relief (which is quite marked if I am particularly tense), I thought it would be good to see what a chiropractor had to say about my upper back, neck and jaw. As it happens, she has identified that I have a colic torticollis, which if I understood her correctly, means one of my vertebrae is not hooked up properly, perhaps causing the head tilt. She will treat it after an x ray. With any luck this will correct my head tilt, and thus might provide some symptom relief for HPPD if it alters blood flow/the spine. 

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