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After 14 yrs Hppd What Has Worked For Me Meds and :


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Hi Guys,

 

I have had Hppd for 14 yrs now and it has been hard I have had better times and very low times, I got this condition from one trip of lsd and also prior to that was one mainlined mdma and some not so magic mushrooms! ,

 

first let me say I am a no bs type of guy and whilst the following list is my opinion I do not experience placebo something either works for me or doesn't feel free to disagree, I have been around a long time so I hope you who are new or old are able to benefit from my wisdom in some areas ok so first off I will tell you of the things that have helped and he things you should stay away from in my humble opinion that said I am not a doctor and I suggest you find an understanding nuerologist to assist you if you can afford it this will be lengthy but a good general guide as I have explored most pharmasutical and herbal supplaments and these are my findings:

 

The helpful :

 

Clonazepame: This has been a helpful drug for me initially and at high doses it has taken most of my syptoms away temporarily but the side effects of long term use and withdrawl make me wish I never started this medication in the first place, clonazepame after 4yrs of taking it initially created in me severe memory loss so much so I cannot sometimes remember what I did the day before or conversations I have had with people, it also depleats vitamin d which in turn has an effect apon your bones it also as a depressant tends to make one feel quite depressed and low mood so the pros and many cons must be wayed up I advise if you can do without it do so and you may be one of those lucky ones who goes into remission.

 

valium.Xanax,nitrazepame,midazolam,temazepame all do nothing for viduals or dp/dr and tolerance build up quickly

 

Keppra: unfourtunatley I saw no improvement visualy with this medication but must admit due to side effects such as keppra rage and the fact that its secreated by the kidneys means I was not able to give it a long shot but I saw no short term improvement.

 

Sinemet: sinemet did nothing at all for me no help with dp/dr/or visuals I didn't think it would work and think its not the sort of med you want to be on long term having done much reaserch.

 

Nootropics : all the racetames that deplete acetyl choline are bad for our condition I know many people tout them as wonder drugs but most is just hype and placebo one must learn to do proper medical trials reaserch to get to the real truth of some of these hyped up characters and yes ive tried all of the from piracetame oxi, ani, phenyl,coulrace and many others.

 

Phosphatidlye serine : ok now this actually worked for me no effect on visuals but helped overall mental clarity and memory helped dramtically.

 

melatonin: has not worked for me took it at 6mg as per the study see relevant paper by ms Swartz old site found that taking it can help memory but it seams to severly increase dp/dr.

 

Pregnenolone: intresting hormone oral doses of it however made me have terrible headache pharmacologically I was hoping this one might work but so far no good.

 

lyrica: good for nerve pain does nothing for visuals and will increase senation of dr .

 

magnesium: very good sleep aid also calcium chanel blocker great for hppd sleep and overall good supplement with sleep benefits and no down sides.

 

vitamin d : do have a blood test and see where your vit d levals are at as clonazepame depleats vitamin d taking vitamin d3 has helped mebut then again I had low levels and now have restored them by taking vit d3 capsuals.

 

others :

Zyprexa knocks you out and makes you fat no good at all.

risperidon: this is the WORST medication for hppd almost makes an increase in visuals and dp/dr 1000% hate the stuff.

ginko biloba makes my visuals worse.

5-htp awfull stauff made visuals worse.

omega three via fish oil 5 times a day ery good provided it is not taken right before bed as it creates cns stimulation.

l theanine - strange compound the verdict is still out on that one.

caffine in high doses causes an increase in visuals.

vincopocetine nothing bad nothing good.

 

all ssri's and snri's increase visuals and seam contradictory for our condition.

and many many nore actually to many including sodium valproate neurotin ect ect ect ask me if you want to know any other and ill tell you.

 

exercise is great really helps but I find it may increase visuals temporarily as it did for me when my blood pressure increases nevertheless the benefits and the NGF from it out weigh the negatives.

 

cheers Chris.

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I am bit scared about that memory loss thing with clonazepam. Ive been on it for some years now and i do not know if its the clonazepam or my worsened HPPD that caused my memory loss. Or even Keppra since it effects my feelings and feelings generate memories. When i am good and symptom free, my memory seems to be intact but if i get sick and get some symptoms and/or have sleep deprivation and symptoms return i do get memory loss. But i think its mostly long term, like someone asks me what i did two months ago i have a hard time to find that place but when i gett better, it comes back to me. Would be nice to test this, anyone know any memory test online?

Edit: Actually, I have my best memories when i sn starting to get better, like 90% from a bad episode. The ketonic diet boosted my meds like crazy. I might just try to lower the Keppra a bit since its much easier to get back on the dose i was on then Clonazepam. Interesting thing is that I get sooo much better during the summer, despite taking a lot if Vitamine D during winter.

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Something i noticed for sure is that i am sorta zoned in to what i am doing. Its great for being productive but i have some issues with focusing my attention to people around. I need to stand and tal to a person directly, that works well. Other things is i do not appreciate music as i used to. I believe this could be the Keppra. Any ideas about that? I am on 1500mg now and would lower it to 1000mg.

Crap this is hard, what is normal and what isnt? Dont remember pre HPPD :)

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Keppra trashes my memory ... really couldn't get over ~1000mg/day.  Can't remember its affect on focus/attention :blink:.  Gabapentin and Klonopin cause a little zoning.

 

Long term memory seems fine.  Shorter time frames are difficult, especially if been extra busy/stressed - that's probably normal.  On cognitive testing, ultra short recall is horrible but improves over time (its really weird not being able to remember in 30 seconds but able to recall in 30 minutes).  Perhaps it relates to stuff like positive afterimaging which is a immediate memory event.

 

It is particularly important to maintain balance - good sleep habits, control stress reaction, etc...

 

So you've lowered Keppra a little.  Are you still on 2 1/4 mg Klonopin?

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Great response Visual. I recall that was one of my first symptoms, not being in the presence when i got my first, mild, HPPD. Keppra sorta fixed that but maybe over the top on the dose i am on now.

Same Clonazepam dose as you wrote but the Keppra dose is still the same, i was thinking about trying to step down to 1000mg but right now i suffer from symptoms from food poisoning. So i'll wait til i get back on track completely, like in a couple of weeks i guess.

From what i have read from you and you symptoms and responsiveness to certain treatment, i believe we have a very similar HPPD-profile.

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Sorry about the food poisoning.  What did you eat?  Gotta stay away from processed foods ...

 

mouseloaf.jpg

 

 

It would be great to profile HPPD.  But what I've seen so far, it is hard for people to give detailed info.

 

Still, there is lots to glean from reading these threads.  And always something for people to try. 

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sorry I didn't mean to come of sounding hopeless, to answer some of you guys questions,

 

clonazepame as I said works short term I think it mostly helps with the dr associated with hppd and the brain clutter as since having this condition ifind it very hard to organise my brain to focus or do simple tasks clonazepame is helpful for that the problem is tolerance buils up and you need to take more and taking more just leads to more memory loss and other side effects like vitamin d depleaTION AND LOWERING OF CALCIUM sorry capps, anyone on clono shold have there vit d checked and other things like b 12

also long term clono use causes depression I beliveby messing with the serotonin aspect of the brain I wont bore you with the pharmocognetics, all that aside its ok only for short term relief, its not a long term option.

 

at merkan: if you can find a doctor who is willing to taper you off using valium and the ashton protocol your memory definatley does return its just the clono and maybe the keppre but once your of them memory comes back I know cauase  ive experienced it.

 

around one time last year when I was pumping up my tyre at a gas station I haD tapering of clono with valium for like 1 and a half years and I was down to a lw dose of valium and all of a sudden he hppd just lifted it was like it went back pre hppd I almost cried but then two minutes klater it returned F>>>>K.

 

so I believe its possible to have your brain heal, exercise and omega threes and forcing myself to push thru social activities has helped things like walnuts fish oil and lots of water eat healthy providing good conditions for your brain to repair for memory phoshatidle serine has helped heaps it one of the few supps that actually works .

 

im still trying to trying keppra and ill keep you updated so far its a nasty drug re rage side effects and makes me feel sooo nutty im also trying low dose pregnenalone as pharmalogicaly and theoretically it shoul  help but hey afer so many yeaqrs im not sure any more.

 

cheers chris.

 

for visual : oh my worst symptoms are the dr its like im on acid small dose all the fing time! caNT FEEL MY HANDS AND Sstuff Like that,

I have trouble seeing through car lights its like I cant filter light properly, I have a lot of geometric morphing everything in my visual field moves I have trouble adjusting to the dark at night and things seem2d all the time however color of thing like trees are very much inhansed I  get a lot of light streaks and shadows it like im behing glass trying to look through into my own world but ive had to get used to it if anyone can suggest anything to help feel free.,

 

peace chris. pps visual I have sinemet and I have no idea how that helped you what has been the bes improvement ?

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Chris,

 

What dose of Sinemet did you take?  (Was it 25/100 formula, how many per day)

 

For me, it cleared up blurry vision, fixed depth perception problems, contrast problems (dull color, night vision problems), helps halos and starbursts, and most dramatically fixed slow-frame-rate motion blindness.  Non visually it helped depression, anxiety, sexual function, and brain fog.

 

I've taken it for 5 years now and most of the benefits remain even when skipping a month.  Was very responsive to low dosage and now take even less.

 

Dosage seems very important with this type of med.  Dr Abraham used Sinemet with a COMT inhibitor (which increases dopamine's duration in the synapses - especially in the executive center which he targeted).  He had about 30% very positive response at this dosage.  One person who had good response to this trail tried low dose Sinemet without response - so they need lots or else it doesn't work.

 

I may be the first member to try Sinemet.  Think Merkan is the second.  Very few have tried it.  And ones I've PMed with often get wrong formula.  Only 2 that I know of have reported negative effects.  Usually it either does nothing or very little.  Those who respond well report sharper vision, help with various visual issues, and many report it fixing DP, DR and/or sexual dysfunction.

 

At this time, don't know of anyone reporting help with OEVs, CEVs or distorted color such as seeing lots of purple.

 

Naturally there is interest in understanding what symptoms Sinemet helps.  Which ones it does not help.  And how, if possible, to know if an individual might respond to this med.  The markers I look for are stuff like contrast problems, blurry vision, depth perception, trails/tracers, motion latency, and sexual dysfunctions.

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Hi guys,

I'm getting to the end of my rope here with visuals the thick streamers colored in turquoise blues, purples they are out of this world. I have never taken any pharmaceutical conventional drugs in the whole duration from the initial birth of this disorder 25 years ago til now.

It was rough when I first received this disorder from shrooms laced with lsd. I had a hard time with it in my teens then in my twenties it started to naturally subside. I was exercising lifting weights, cardio, eating properly and sleeping right. I went to College started to drink coffee like mad and the symptoms started to manifest back again like a trooper.. Memory started going followed up by strong visual ten times worse than before. Tinnitus started screaming again fuck man it just began to rage like a bull. My feelings inside are bleak as fuck I feel like I'm going on a trip with Buck Rogers Battle Star of Galatica. I feel confused a lot too like discombobulated quite a bit. I finally realized coffee was the culprit so that is exterminated from my drinkables. Anyways I'm really apprehensive about doing these pharmas scared shit is going to get worse. I'm sure u guys can relate but if u do kno something that really works like for sure I'm opened ears.

Chris my hands are going all numb as well in the last year or so plus muscle pain and joint pain beyond belief is this from hppd. My doctor doesn't know nothing about the disorder at all.. I actually kno more then he does I think this is what bothers me and makes me feel hopeless..

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First -  Don't feel frustrated/hopeless because you know more about your condition than most doctors.  They are not trained in this sort of thing.  What matters is finding a doctor who is willing to work with you - which means prescribing medicines.  It will help your doctor(s) to feel comfortable with this if they have an appropriate diagnosis.  HPPD is not a helpful diagnosis because there is no established treatment protocol.  But if you convince you doctor that it is some kind of mild brain injury, it will untie his hands to prescribe many different types of meds.  Are you in USA?

 

Second -  After 25 years of not trying meds, consider trying them.  While everyone is different, some basic patterns come up.  Here is a summery and hopefully other members will add to or correct me regarding this post.

 

1  Avoid meds that directly try to increase serotonin or norepinephrine.  Example: SSRIs (Prozac), SNRIs (Effexor)

 

2  Avoid meds that directly reduce dopamine - antipsychotics.

 

3  Try meds that are not time released.  This is so you can break the pill/capsule to small amounts - so you can take small amounts and monitor the benefits vs side-effects.  Start slow and be patient.

 

4  Anti-seizure meds are a good try

 

5  Remember that often meds only manage a problem ... they rarely cure.  But don't be discouraged ... be glad to find a glass half-full.  You clearly report that your HPPD is distressing.

 

6  The most 'successful' meds reported have been: Klonopin, Keppra and Sinemet.

 

7  There may be some dietary things to try - you already know that drinking coffee bothers you.

 

8  Time is often a healer, but that has not worked for you.  You need something more if you want relief.

 

No doubt there are other pointer to add to these, it is just a start.

 

For what it is worth, I had muscle tightness and pain, joint pain, and numbness.  These have been mostly resolved with Sinemet (which is not typical for this med).  Klonopin helped anxiety but nothing else.  Keppra trashes my memory and gives me mild CEVs.

 

So again, don't feel hopeless even after all this time.  Explore the options that you have not.  You have this forum to help - hey, we might not be much but we are here.

 

Hope this helps...

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Visual,

Thank u very much on the personal level and I sincerely appreciate u taking the time with a genuine med layout schedule/routine on ur history that worked for u and things that didn't. That's awesome I will venture into this and expand my human mental horizon because I do need some relief its about that time..

I'm going to get my doctor to recommend me to a neuro-ophalmoligist << not sure if that's the right profession I remember reading something like that if not I will figure it out..

Do u kno any natural holistic medicines that u tried that might be good too??

I will check out the sinemet, keppra and klonopin those drugs seem to be the most favored amongst h.p.p.ders..

Again thanks visual I hope this works.. Hppd24years and destined to find relief..

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hppd 24 years sorry to hear that man im going through some insane derealisation and visual fog shit too atm, but listen don't be afraid to try something that might help im a big beliver if you can live without taking any pharmacuticals with this condition you should I believe its easier to heal this way but sometimes its just too much!!! that's my relationship with clonazepame I hate it but sometimes I need it just to function you could just try a low dose of clono like 0.5mg and see if you get a little relief don't be afraid also use a little magnesium it will help and its non addictive as for keppra I don't know its to hit and miss for me but you may be different if I waS YOU ID GET HOLD OF A LOW DOSE OF CLONO AND JUST TAKE IT WHEN THINGS ARE REALLLY BAD THAT WAY YOUR NOT LIKELY TO GET ADDICTED sorry caps stupid keyboard!

 

visual I really want sinemet to work but it aint done shit im taking 100/25 im gonna take two tonight and try again see if it works at all because if anytime is a good time to test it its now cause I feel im trippin balls.

 

visual are you sure for you its the sinemet that's working are you on other meds? and how fast is the onset when you first took it like what did you notice the most ! thanks guys.

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oh I forgot to add yes caffine can make people with hppd trip balls especially the first few years so its easy just avoid it and if you need get some l-theanine to have with it if your a big coffe drinker as that might help it take out the trippyness otherwise just stop taking it,

 

cheers Chris.

 

ps love you guys this condition sucks! shout out to all in Australia with this condition!

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All the dopamine meds I've tried affected visual symptoms.  Sinemet was not the first tried, but is the best (most benefit with least side effects).  These were tried individually without (or even near) taking other meds.  As most who try will experience, doctors don't hand out Sinemet.  It isn't that it is particularly dangerous as it is exclusively used for Parkinson's disease.

 

This is what happened:

 

An herbalist who does energy testing asked if I had Parkinson's since I keep testing for herbs used for that.  No, don't have that and kind of dismissed it as another 'quack' thing.  But later looked up that advanced Parkinson's does have several of these visual symptoms.  Then search through 43 neurological diseases to see what they had for visual problems.  Multiple Sclerosis has some but they are completely different.  The rest zip.

 

So researched about Parkinson's, including reading forum posts written by people who suffer the disease.  It is hard to find much discussion about visual problem for this disorder because 1) it isn't their worst problem, and 2) most people with the disease are old and suffer reduced eyesight anyway.  Many also suffer other neurological symptoms not considered part of PD, like numbness, etc.

 

Anyway, spoke to a docs about wanting to try dopamine increasing meds and asked for Cabergoline.  Again no go with them.  Finally asked for Wellbutrin since docs hand out antidepressants like candy and this anecdotally is liked by PD people.  Was actually really pissed off when I got this med since the whole experience was negative and the med would be too weak anyway.

 

However, after 3 hours of a single 75mg dose of Wellbutrin SR, began to see improvements.  While there were lots of symptoms, a very profound one was a sort of motion blindness.  I saw in single frames about 1 second apart - sort of like a poor webcam conference.  In 3 days of 75mg/day, this was cut to 1/2 second.  Increased dose to 150mg/day and this was less than 1/4 second.  However after a week, side effects were a problem and I stopped.  All the symptoms increased in line with the meds half-life but never as bad as they were originally - there was some permanent benefit.  The motion latency was less than 1/2 second.

 

Symptoms improved were: contrast, night-vision, sharpness, color, depth perception, motion latency, insomnia, anxiety, and ability to feel pleasure.

 

A month later, the sense of smell began returning.  At this time, because of good results, was able to get Requip to try.  This wasn't so good.  Symptoms 'shifted' exactly with the dosage/half-life of the med.  So in an hour, vision was blurrier.  In 4 hours, vision was sharp.  The med was more a nuisance than help.  However it further confirmed that dopamine was involved in my problems.

 

Another month went by and then came Sinemet.  Was actually scared to try it.  Didn't like the description of what carbidopa is and does.  Anyway, began using it and it is the best.

 

A couple months later saw a Parkinson's and Huntingtons researcher.  Said it wasn't either of those.  Thought Sinemet is a wonderful med.  Wanted to put me on antiseizure meds as well but I was afraid at the time.  Got Selegiline to try - it is good but weakish and prevents trying any meds that increase serotonin and/or norepinephrine.

 

Another couple of months got in a bad situation again and actually got more brain injury.  Definitely got a mild seizure disorder and got Gabapentin to manage it.

 

 

That is the gist of what happened.  Dopamine alone affects many of my problems.  And, nicely, I don't need very much or even as much as 5 years ago.  In a sense, Sinemet seems less important now and Gabapentin more important.  Time will tell.  I do cycles off these, those it is harder with the Gabapentin.  I've got several other meds on hand, but these two are the only 'regulars'.

 

While research with LSD isolate a specific inverse (inhibitory in function) serotonin receptor, dopamine is involved for many of us.  So is GABA.  I am convinced there is an allergic/histamine link involved as well - as an example, this can be seen with COX2 which involves a junction of dopamine and GABA ... with some being sensitive to corn or sensitive to prednisone.

 

The list probably grows from here ... Making it very individualistic in finding a solution.  Each have their own key or combination lock.  But the pattern for meds is: Klonopin, Sinemet, and Keppra.

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hey thanks man I can certainly identify with the motion latency I actually never had a word for it until I just read that and straight away knew what you said I wish sinemt worked for me we seem to have some similar hppd related problems but it just does nothing for me am I dosing it wrong 2x 25/100mg a day?

 

cheers chris.

ps have you tried keppra bro did it help you ?

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As a daily dose, that is fine ... just don't take it at one time, lol.   I take 1/2 pill at a time and then only 2 or 3 times per day.

 

Unlike Wellbutrin and Requip, I didn't notice Sinemet until the next day.  But I've had othertime that it will fix things that flar in 30-60 minutes.

 

So if your kidneys are feeling better, try it a few days just in case you do need time.

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I have a feeling that the sinemet may be working for you because it may be correcting some underlying parkensonian stuff has that though ever crossed your mind not that you don't have hppd but that sinemet is helping deal with other issues cause for me it makes me worse and feel sick as idont know anyone else having heard of succsess on it either im starting to think a lot of hppderes have a tendancy toward placebo! and im not just talking about sinimet which in your case is helping you but all the shit I read and try on here some meds are  fucking awful for traditional hppd like ssri's and respiredone yet there are people on here who say they have succsess on them wtf? I don't understand maybe ssnri but straight ssri with no flare ups and riperedone you gotta be kidding me !

 

ranting . chris.

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Your frustration is understandable.  This is why I harp about collecting data.  The fact that someone is actually helped with respiredone is amazing and highlights how different each person is.

 

My dopamine/PD situation is as unique as any.  Yet why do most get worse when you lower dopamine with respiradone or another antipsychotic?  Even when something like Sinemet doesn't help, lowering dopamine ususlly is a bad experience.

 

HPPD isn't a single disease.  It is brain system(s) misfunctioning.  Whether that is from actually synaptic damage or simply from our teaching ourselfs to function "in another dimension" really depends on the individual.

 

Even "flashbacks" is a misnomer.  Seems most here have a continous problem with waxing and waning of symptoms.

 

In the end we have to figure out what works for each individual.

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  • 1 month later...
  • 1 year later...

Lamitical is not something to mess with , my doctor who has prescribed me a lot of different meds to try had experiance with a little girl who got steven johnsosns sydrome from that awful should be illegal shit ! her skin fell off or something really really messed up so that scared the shit out of me especially when my doctor would prescribe me opiates for pain endone ect for my neck but was like heck no to lamitical that should tell you something! so nah wont be doing that , i am on no meds now just take magnesium amino acid chelate and exsercise that and prayinf is the best combo i have become a beliver in prayer and sometimes if i pray enough i dont notice my symptoms much , im not a religious person but i had a vison of jesus and no i wasnt tripping he came to me with arms open when i was really tormented from all this hppd plus life crap,  and he said "come back to me", and then just left the room i really wanted to talk to him though, so i pray now, its amazing cause i told God i didnt want anything to do with him because my life was hell and i was so angry at him and when he came to me i wasnt praying or looking for God , so i was kinda amazed at the kindness of the experiance, as i said not a religious person but do pray now still have hppd but off the meds .

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  • 3 weeks later...

All the dopamine meds I've tried affected visual symptoms.  Sinemet was not the first tried, but is the best (most benefit with least side effects).

 

 Hey Visual,

 

What about amino acid supplementation - did anybody ever tried that? This looks like a good protocol for replenishing/balancing dopamine and serotonin in people with deficiency. http://new.neurosciencemyths.com/wp-content/uploads/2015/03/Relative-nutritional-deficiencies-yellow.pdf

 

If ths article is right about the way amino acids should be supplemented - then that would explain why people had no success with using just one aminoacid to resolve the deficiency. From what I understood it says that one can't restore his dopamine/serotonine levels by simply supplementing one amino acid eg. 5-htp or L-dopa. Overproduction of one neurotransmitter will result in depleting the other which will in the end be resulting in depletion of the first one as well.

These aminoacids have to be administered both at the same time in doses that can differ for each person, but its important to get enough of both to put them in a competetitive state. Then they will be brought back to balance..

Don't quote me on that though, read it yourself.

 

I would love to try this before getting into any serious meds, however I guess its gonna be extremely difficult to find somebody who knows exactly how to carry out this protocol. If anybody knows any amino acids practicioner/clinic in europe where they understand this kind of protocol (or simply know the right way of supplementing amino acids) - please let me know.

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