Drugs worth trying.

[windscar]

Clonazepam, Levetiracetam, Clonidine and that new drug used by Dr.Abraham that he ask not to be posted on internet.

Is it right? Any other?

[LarryC]

You should see your doctor and present Dr. Abraham's papers to him/her.

Overall, Clonazepam is the med that Dr. Abraham usually recommends.

No one I know of had any success with Clonidine.

Levetiracetam(Keppra) yes though should be under dr. supervision also as with any and go up slowly. Could need to use Clonazepam in conjuntion to reduce the hyper anxiety that some get with it.

The new treatment by Dr. Abraham, I know little about it. I think it is a one off combo. Use it once and then stop using it. You have to see Dr Abraham to to be a trial subject.

In any case, You could contact Dr. Abraham to ask questions about your condition and treatments. At his website drabraham.com

[1998]

Everybody is so different I don't even want to mention any.

Larry quick ? What Mg. of Klonopin does Dr. Abraham recommend for hppders. Also do you think hppders experience a worse w/d from klonopin because it lessened some of our symptoms so much.

I know you've read many post's on these boards it's the only reason I ask, hope you're sleeping better these days

[LarryC]

Everybody is so different I don't even want to mention any.

Larry quick ? What Mg. of Klonopin does Dr. Abraham recommend for hppders. Also do you think hppders experience a worse w/d from klonopin because it lessened some of our symptoms so much.

I know you've read many post's on these boards it's the only reason I ask, hope you're sleeping better these days

1998 first sentence summarizes the approach that is correct. Everyone react different to meds. And as we know from any drug. Best to find a doc whou know something about this or is willing to corespond with Abraham or someone who does.

1998 -I don't know where I put the work quick in this thread. For keppra, the common recommendation is to start at 250 mg once per day.

You may be refering to the thread regarding the question of taking 4 mg once and see what happens.

I think from experience of many people, it really affect someone to take 4 mg all in one dose.

My understanding is that it is probably not going to help visual symptoms immediately , but I could be mistaken.

I knoe dr. Abraham first recommended that I use 1.5 mg per day divided in 3 dosages. No effect on visuals. He thought like I said I had hppd with some other condition. As they call it comorbid condition.

He had recommended that I try 3 mgs/day for a trial. I did and it still did nothing for visuals. I was abeto eventualyy stop after months.

Dr. Lerner suggested 2-4mg per day. Finding the dose that stopped the visual symptoms. He also had mentionrd that the med had to be stopped. I think no more thaan two years. Both docs recommended a slow reduction to avoid issues.

I think like anyone, taking an addictive drug or medication, people with hppd have the same issues with addiction and withdrawel. People without hppd would use it for anxiety and if they are prone to anxiery it will be painful when they come off of it after having taken it for a long while.

My sleep/ I woke up at 4:30 am and am doing this now. Always wake up when in some kind of dream.

When I get over nicotine, I will go for eliminating klonopin slowly.

I take about .75 - 1 mg per day and it has messes me up.

I also take Soma for muscle relaxation which also has side effects and can be addictive.

[windscar]

Dr. Lerner suggested 2-4mg per day. Finding the dose that stopped the visual symptoms. He also had mentionrd that the med had to be stopped. I think no more thaan two years. Both docs recommended a slow reduction to avoid issues.

Pardon? I couldn't understand this entire paragraph.

What do you think about this?

http://hppd.stormloa...clonidine2.html

Clonidine is an alpha2 agonist. There is also a paper saying risperidone worsens HPPD because of alpha2 antagonism (http://www.erowid.org/references/refs_view.php?ID=1247&C=HPPD). Can you help me finding the whole paper?

[LarryC]

Pardon? I couldn't understand this entire paragraph.

What do you think about this?

http://hppd.stormloa...clonidine2.html

Clonidine is an alpha2 agonist. There is also a paper saying risperidone worsens HPPD because of alpha2 antagonism (http://www.erowid.org/references/refs_view.php?ID=1247&C=HPPD). Can you help me finding the whole paper?

I do not uderstand what you do not understand. Dr. Lerner says that a person may need 2 mg/day or he may need up to 4 mg/day. Depends on the individual. No guarentee that it will reduce visuals though. That is the approach. He also said that the person should not take klonopin for more than 2 years and that tapering off slowly should be the approach. In my correspondence with Lerner and even Abraham, if the klonopin is working reducing symptoms, then in time the symptoms will not recure on its own from stopping the med. Thay over time you should then have no symptoms or very little symptoms and can stop taking the med.

In my case, since it did nothing for the visual the few trial(significant times on the med) at various dosages, I am no judge of those docs experience with the ned.

Risperidone has been seen to cause afterimages to people who do not even have hppd because of what you said the literature says = affects the 5ht2a receptors. I read the abstract on a paper stating this.

Just FYI, some peoplr on the old board had been prescribed risperidone with no prior knowledge of this by them or their doc and there hppd symptons did Not get any worse.

I have read Dr. Lerners abstract a long while ago. You will notice that at the end of the paragraph that the study referred to flashbacks. Flashbacks and hppd are different conditions. I would not buy the whole paper for that reason. Once you realize that he is treating an entirely different condition, the results become meaningless.

Clonidine has not helped anyone I know of with hppd. David once said that he would like to see it off the list of medication treatments because it really hasn't shown promise in treating the symptoms of hppd.

[Phenomenon]

What about gabitril/tiagabine? GABA uptake inhibitor. Shouldnt that be like clonopine without the addiction etc?

[windscar]

Well but Dr.Lerner used the right term too and what would explain 8 people reporting an improvement on their symptoms? Just asking, because Self-Report-Scale is the same method used on that other paper he treats patients with clonazepam. Also I wonder why they use that scale instead of testing the visuals by themselves, ie the flickering light, or measuring the duration of afterimages.

It is good to know some people reported no worsening on risperdone. Is there a chance that anti-psychotics are a potential treatment, and that we don't know it because nobody uses them afraid of getting worse?

Actually the whole risperidone thing is weird. It does affect 5HT2A but as an antagonist, while LSD is an agonist. It does not make any sense that 5HT2A antagonist causes visuals. It made much sense when I read clonidine helps being an alpha2 agonist and risperidone prejudices being an alpha2 antagonist.

And did I understand right? You basically said clonazepam is a cure when it works. This is awesome. It did work on me. At 1.5mg I could MEASURE a reduction on my afterimages. So it works for me. But then, again, how safe is using clonazepam like that?

Benzodiazepines such as clonazepam have a fast onset of action and high effectiveness rate and low toxicity in overdose but have drawbacks due to adverse reactions including paradoxical effects' date=' drowsiness, and cognitive impairment. Cognitive impairments can persist for at least 6 months after withdrawal of clonazepam; it is unclear whether full recovery of memory functions occurs. Other long-term effects of benzodiazepines include tolerance, a benzodiazepine dependence as well as a benzodiazepine withdrawal syndrome occurs in a third of people treated with clonazepam for longer than 4 weeks.[/quote']

This, and www.benzowithdrawal.com totally scares me. If clonazepam successfully "slows down" your visual cortex long-term it will possible slow down everything else on your brain. I am thinking correctly? Cognitive impairment is my biggest issue with HPPD so...

And by the way... WHY clonazepam didn't help you? It doesn't make any sense. HPPD is probably caused by the same mechanism, our visual cortex is not so different (is it?), so a drug that works for some should work for all. I know it doesn't, but... why? Perhaps you are naturally tolerant and would need a higher dose? Did you fell clonazepam's effects at all?

And thanks for answering, you are very nice.

[LarryC]

Well but Dr.Lerner used the right term too and what would explain 8 people reporting an improvement on their symptoms? Just asking, because Self-Report-Scale is the same method used on that other paper he treats patients with clonazepam. Also I wonder why they use that scale instead of testing the visuals by themselves, ie the flickering light, or measuring the duration of afterimages.

DR LERNER WAS USING A TERM FOR AN INTERMITANT CONDITION. THESE ARE FLASHBACK WHICH SOME PEOPLE GET. ONE MINUTE THEY ARE FINE AND THEN THEY HAVE A FLASH REMENISCANT OF A TRIP ON ACID. IT IS LIKE THEY ARE THERE, RE-LIVING AN ACID EXPERIENCE, LIKE WHEN THE TIME THEY WERE ON THE DRUG AND HAVING THE SAME EXPERIENCE/FANTASY/HALLUCINATING. THEN THE EPISODE ENDS. I KNEW SOME PEOPLE WHO HAD THAT EXPERIENCE FOR YEARS, YEARS AGO.

HPPD IS 24/7 PERCEPTION DISORDER, NO LET UP AND IT HAS SEVERAL SYMPTOMS COMMON TO ALL THAT HAVE THE DIAGNOSIS OF HPPD. AS I HAVE SAID, FOR YEARS I WAS ON THE OTHER BOARD, NO ONE HAS REPORTED EVEN PARTIAL ALLEVIATION OF SYMPTOMS FROM CLONODINE. I WISH THERE WERE SEVERAL OTHERS HERE FROM THE OLD BOARD TO CONFIRM THIS AND TO EXPLAIN FURTHER.

It is good to know some people reported no worsening on risperdone. Is there a chance that anti-psychotics are a potential treatment, and that we don't know it because nobody uses them afraid of getting worse?

IT HAS NEVER HELPED ANYONE THAT WAS ON THE HPPD BOARD. IT IS NOT AT ALL RECOMMENDED BY ANY DOCTOR WHO KNOWS ABOUT HPPD.

Actually the whole risperidone thing is weird. It does affect 5HT2A but as an antagonist, while LSD is an agonist. It does not make any sense that 5HT2A antagonist causes visuals. It made much sense when I read clonidine helps being an alpha2 agonist and risperidone prejudices being an alpha2 antagonist.

I FORGOT MORE OF THE SCIENCE THAN I HAVE LEFT IN MY HEAD. FATIGUE WITH IT ALL I GUESS. AND MY FIRST DEGREE IS IN CHEMICAL ENGINEERING AND READ THE STUDIES AND TALKED WITH MANY DOCTORS. IF SHAOLINBOMBER STAYED ON THE BOARD, HE WOULD QUICKLY BE ABLE TO ANSWER THAT AND LET YOU KNOW IF YOUR REASONING IS THE ACTUAL SCIENCE. HE IS ON TOP OF THE PUBLISHED PAPERS AND IS STUDYING NEUROCHEMISTRY. HE ADDED MANY ARTICLES TO THE OLD SITE.

And did I understand right? You basically said clonazepam is a cure when it works. This is awesome. It did work on me. At 1.5mg I could MEASURE a reduction on my afterimages. So it works for me. But then, again, how safe is using clonazepam like that?

I DID NOT SAY IT WAS A CURE. I AM INTERPRETING LERNER AND ABRAHAM'S COMMENTS TO MEAN THAT OVER TIME,IF IT IS WORKING FOR YOUR SYMPTOMS, IT IS ALSO CORRECTING THE IMBALANCE OR DYSFUNCTION. SO AT ONE POINT YOU WOULD GET OFF IT SLOWLY AND TRY THAT BEFORE 2 YEARS.

This, and www.benzowithdrawal.com totally scares me. If clonazepam successfully "slows down" your visual cortex long-term it will possible slow down everything else on your brain. I am thinking correctly? Cognitive impairment is my biggest issue with HPPD so...

IT IS A WICKED DRUG AS ARE ALL BENZOS. YOU ARE NOT TAKING TOO MUCH A RISK IF YOU ARE ONLY TAKING IT FOR A WHILE.

edit: I AM MAKING AN EDIT BECAUSE WHAT YOU SAID REMINDED ME OF SOMETHING A NEUROLOGIST SAID TO ME. HE SAID THE KLONOPIN'S EFFECTIVENESS IS NOT DUE TO THE EFFECT ON THE GABA SYSTEM IN THE BRAIN AS HAS BEEN WRITTEN ABOUT IN PAPERS ON HPPD BUT ON ITS ABILITY TO "slow down" EVRYTHING IN YOUR BRAIN AS YOU JUST SAID. SO HIS LAST APPROACH WOULD BE TO USE KLONOPIN. I ONLY SAW THAT DOC ONCE. MY NEUROLOGIST SENT ME TO HIM FOR A RELATED REASON AND THIS DOC HAPPENED TO BE CLINICALLY FAMILIAR WITH HPPD.

I CAN NOT GET INTO IT RIGHT NOW BUT HE AID IT WAS NOT GABA OR THE GABA SYSTEM AFFECTED IN THE BRAIN THAT LSD IS USURPING, BUT ACEYTLCHOLINE AND THAT THERAPY SHOULD FIRST BE TOWARDS CORRECTING THAT IMBALANCE.

And by the way... WHY clonazepam didn't help you? It doesn't make any sense. HPPD is probably caused by the same mechanism, our visual cortex is not so different (is it?), so a drug that works for some should work for all. I know it doesn't, but... why? Perhaps you are naturally tolerant and would need a higher dose? Did you fell clonazepam's effects at all?

THAT IS BEYOND MY UNDERSTANDING. AND ANY DOCTOR I SPEAK TO ABOUT ANY DRUG THAT WORKS FOR SOME THAT DOES NOT WORK FOR ALL HAVING THE SAME MEDICAL PROBLEM. SO THEY KEEP COMING UP WITH DIFFERENT/SIMILAR MEDS THAT THE OTHERS CAN TAKE AND IMPROVE THEIR CONDITION AND LIFE. THAT IS OF COURSE FOR DISEASES AND DYSFUNCTIONS/ILLNESSES THAT HAVE A SIGNIFICANT ENOUGH OF THE POPULATION FOR DRUG COMPANIES TO INVEST THE MONEY FOR RESEARCH AND DRUG TESTING FOR SAFETY AND EFFECTIVENESS. AND THEN GET FDA APPROVAL FOR SALE TO THE PUBLIC.

AS WE KNOW HPPD IS NOT IN THAT CLASSIFICATION. IT WOULD HAVE TO BE AN ORPHAN DRUG OR THE USE OF A DRUG THAT HAS COME OUT FOR A DIFFERENT PUPOSE. I.E. USING FOR OFF LABEL SPECIFICS (FOR EXAMPLE KLONOPIN FOR ONE AND RECENTLY KEPPRA).

ALSO REMEMBER, 3 DOCTORS HAVE DIAGNOSED ME WITH HPPD+ . AND THE + NO ONE KNOWS EXACTLY WHAT THAT IS. IF IT IS ACEPHALEGIC MIGRAINE AS IS SUSPECTED, THEN KLONOPIN WOULD NOT WORK. THERE ARE SIMILAR VISUAL ASSOCIATED WITH ACEPHALEGIC PERSISTANT MIGRAINE AND AS FAR AS I KNOW, NOTHING HAS HELPED ANY MEASURABLE PERCENTAGE OF THOSE WITH THE PROBLEM(S). SEE VISUALSNOW BOARD AND THOSEWITHVISUALSNOW SITE AND YOU WILL SEE WHAT I MEAN.

And thanks for answering, you are very nice.

YOU ARE WELCOME. I USED TO BE MORE KNOWLEDGEBLE AND VERSED ON THIS. THAT WAS WHEN I THOUGHT IF I READ ENOUGH ABOUT IT I WOULD FIND A TREATMENT, LIKE MANY PEOPLE DO.

ALSO I REMEMBER HOW I FELT WHEN THIS ALL STARTED FOR ME AND THERE WAS NO INTERNET OR RESOURCES FOR INFO. CERTANLY NO SUPPORT.

[windscar]

I have read some posts of that ShiaolinBomber on bluelight and he had indeed the greatest knowledge about HPPD. I have tried to contact him but unfortunatelly he is banned. =\

[1998]

Thx Larry I understood lol, My klonopin wd's are hitting me at full force (just .25 drop off crazy) anyways I was reading your post yesterday and while I was replying I had a horrific ocular migraine to go along w/ my klono w/d's (just a great day

Off this topic but the last 3 cuts of klonpin I've done, on day 5 they always get the worse right when I think I'm in the clear.\

I'm prob not making much sense I can't focus much anymore time to go be sick later

[LarryC]

I have read some posts of that ShiaolinBomber on bluelight and he had indeed the greatest knowledge about HPPD. I have tried to contact him but unfortunatelly he is banned. =\

ShaolinBomber is a member here. Suggest you send him a note through this site.

[LarryC]

Thx Larry I understood lol, My klonopin wd's are hitting me at full force (just .25 drop off crazy) anyways I was reading your post yesterday and while I was replying I had a horrific ocular migraine to go along w/ my klono w/d's (just a great day

Off this topic but the last 3 cuts of klonpin I've done, on day 5 they always get the worse right when I think I'm in the clear.\

I'm prob not making much sense I can't focus much anymore time to go be sick later

1998, sorry for what the klono is doing to you. It is screwing me up also. Write again when you are more coherent. I did not understand all you were talking about.

Best,

Larry

[windscar]

Was he not clear? He said his wd's are strong even if he only cut .25mg and that when he cuts he have wd's but after some time he feels better but on the fifth day he suddenly feels worse.

[LarryC]

Was he not clear? He said his wd's are strong even if he only cut .25mg and that when he cuts he have wd's but after some time he feels better but on the fifth day he suddenly feels worse.

Why are you focusing on this little tidbit instead of commenting on the post I took some time to write to reply to your questions/statements?

[joe]

Gabatril is a pretty bad drug. I tried it for about a month, month and a half and it's crappy. I've already written about it in my naltrexone post. Maybe if I went slower on it or something which honestly I didn't but the side effects were pretty bad. It's nothing like klonopin.

[windscar]

Sorry dude, I just had nothing to ask anymore. You answered everything I wanted perfectly. But if you want my opinion then, here we go.

I don't think Lerner was trying to treat Flashbacks on that paper as he clearly stated HPPD on the start, I think he just used the term flashback as a writing feature. But your experience with the old forum shows that clonidine really doesn't work so I throw up that idea.

About your doctor, nice that he thinks the same as me. I didn't understand his linking of acethylcoline to HPPD and I think it's something to look for later.

I totally agree about your comment about drugs companies and HPPD, and I think that nobody will put money on that, so, if we want an answer, then we will have to find it by ourselves. That's why I want to do medicine (I was already considering that). I don't think we will ever find an off-label drug that works 100%, but I know there are many chemicals that are not sold by drugs companies that could help us, because they have different mechanisms, different affinities for receptors, etc., and are not studied just because they are useless to the most spread (lucrative) diseases. But if I study medicine and chemistry, I can learn more about them and perhaps develop some tests on rats or whatnot and, who knows, find a drug that fits HPPD? That would be sweet and we could be the first to test it. Unfortunately, there is still a chance that no drug in the universe is capable of curing us. I mean, if HPPD is related to some kind of higher damage, like neuron death, rewiring of built-up neural networks or any other weird condition, then we can't hope that any drug will do the job of reverting it. Perhaps nanotechnology could. But I don't know, I'm just a 18 boy, I have much to learn. What I know is that only trying hard we can find our answers and I will certainly try, because I have nothing to loss. *FUCKINHEADACHE*

And about you, good luck finding that "+". But I still think that regardless of what that "+" is, if HPPD is still present then clonazepan SHOULD work. But I'm not sure, that is just my yet ignorant concept about that. I just want to learn more.

That headache is killing me, gotta sleep, goodnight. *Note: I NEVER had headache before HPPD - NEVER - just learned how it is*

[LarryC]

I don't think Lerner was trying to treat Flashbacks on that paper as he clearly stated HPPD on the start, I think he just used the term flashback as a writing feature. But your experience with the old forum shows that clonidine really doesn't work so I throw up that idea.

He actually knows much about HPPD and he also knows about flashbacks from LSD. So I see it as him confusing the issue which I am surprised at from him but then again my correspondence with him and also his correspondence with my neurologist indicates that he is not sure about the treatments.

One thing you may find interesting is that in his emails to me and also to my doctor, he never once mentioned clonodine as a medication to trear hppd though he did mention klonopin and some others.

I tried clonodine anyway and it did nothing for my symptoms. I would suggest that you ping David K and ask him about his opinion on clonodine and to why he has the opinion he does. Also ask about Lerner's study.

And about you, good luck finding that "+". But I still think that regardless of what that "+" is, if HPPD is still present then clonazepan SHOULD work. But I'm not sure, that is just my yet ignorant concept about that. I just want to learn more

First, as I mentioned before, klonopin does no work for everyone as I have stated and canbe verified by others if they were on this board like they were members before.

Second, that is true for all medications for any disease in the books. Works for some and not others.

Third, the + is something that causes afterimages, static and tinitus. You can have those symptoms from other causes as I have stated and as I have also mentioned, klonopin does not reduce those symptom for people who have the symptoms from something other than LSD type drugs. The + in my case as I mentioned might be as the neuro opthalmologist theorized.

[windscar]

Ah I see, but if other thing is causing that then what is your HPPD causing?

[LarryC]

Ah I see, but if other thing is causing that then what is your HPPD causing?

Fair question. I do not know if what or how much of what I have is from recurrance of HPPD or from mechanical strain/damage or possible acephelegic migriane. No one does. Been to many specialists.

The important thing is no med worked for me, my symptons. But it is possible they would not have worked for me if it was only the recurrance of HPPD. It happens, that meds do nothing for some people. You would have seen a great deal of that on the other board.

My symptoms had gone away, virtually completely, twice. No meds at all. And the the length of times of alleviation were long.

[windscar]

Sorry if you already said but can you connect the return of your symptoms to something? Anything?

[LarryC]

Sorry if you already said but can you connect the return of your symptoms to something? Anything?

Yes. It happened right after straining my body and jerking my neck during a hike. Look back on on the board here and you will see the explanation of the incident and what I said the docs think.

[windscar]

Oh sure you said, but I didn't understand. What 'jerking'/'straining' your neck means?

[LarryC]

Oh sure you said, but I didn't understand. What 'jerking'/'straining' your neck means?

I think that jerking my neck and straining my neck is self explanitory. And anyone should be able to figure what that means when saying jerking and straining my neck in relation to hiking.

I will try to make it clearer for you. You have heard of whiplash? It happens often to people who are in a car and are hit by another car in the back. The impact causes the person in the car to thrust the neck forward and snap back. That is also called jerking the neck.

I was hiking down the mountain on a steep rocky path that wasn't really a path and my neck kept jerking forward and back from coming down on the uneven rocky path. My neck muscles also strained by trying to keep it strainght and keep it from jerking forward and back (Note:I am not saying that I got whiplash from jerking my neck but maybe I did). I had alot of pain and muscular tension for a long while after that, especially in the neck. The nerves in the back of the neck(and there are many) were bruised in a way from the motion and tension. Also the blood vessels in the back of the neck would have been constricted.

When I corresponded with Dr. Lerner, he told me that in his experience, pressure either on the neck or eyes has triggered or retriggered HPPD symptoms.

I hope this clears this up to your understanding because I do not know how to explain it further.

[joe]

things are a little more complex than lsd just works on serotonin or gaba, i almost hate to send this to you. http://www.yourpbc.org/articles/detail.dot?id=79253

If you 18, I'm sure you have insurance, why don't you beat a doctor's door down until they'll give you a functional MRI or a PET scan study if you want to possibly shed a little more light on what's going on in your brain? how much did you do anyway?

I also had this theory that the "head pressure/head aches" people experience is actually raise intracranial hypertension of some kind, I'd wonder what a lumbar puncture would look like to someone that just got HPPD. just curious, that's all