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Medication Trial: Dr. Abraham


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http://www.jointcommission.org/assets/1/18/speakup_research.pdf

Information about participating in research.

"What happens during research studies of new

medicines?

First, a few volunteers test the safety of the medicine

and how much should be taken. Then, larger groups

of people test the long term safety of the medicine

and how well it works. Find out which group you will

be in."

LarryC is on topic.

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  • 3 weeks later...

For anyone thinking about going I can relate my experience. I went to Dr. Abraham and tried the medication. It is not a placebo because you take the prescription to a pharmacy of your choice and have it filled. Unless you are one who thinks the whole world is conspiring to keep you sick this should eliminate any fears about that (in which case I really don't have an answer for you). I didn't feel the medication worked for me, but the trip was worth it because I finally had an official diagnosis. Dr. Abraham is extremely intelligent and kind and, most of all, he doesn't think we are all making this up to get attention (which has been my experience with 99 percent of the medical community). Having a diagnosis means that your own doctor can no longer stare off into space the minute you start talking about hppd because if he does he'll be ignoring a serious medical condition. Of course, without a diagnosis, most of our doctors just pretend hppd doesn't exist. I am not wealthy and I had to save up for the trek to Boston, but it was worth every cent just to be in a room with someone who took me seriously and treated me like the professional, intelligent adult that I am. However, the trip was also very traumatic as I was forced to live and talk about my hppd. Also, even though I did not have high hopes for the medication, it was quite heartbreaking when it did not relieve my symptoms.

If you think you might be interested in going I would suggest researching Dr. Abraham and deciding whether or not you feel like he can help you. In my opinion someone who was a co-recipient of a Nobel Prize is far from being a self-serving quack. My personal experience with him has only furthered this perception. Furthermore, the medical community at large ignores our condition and I am thankful for anyone who cares or is interested in it enough to actually take it seriously. This of course, is only my opinion.

It is not a placebo because you take the prescription to a pharmacy of your choice and have it filled

So, at least with the trail that you participated in, it was a medication that is available to people – but just used for different disorders? (not a new med under FDA trail approval)

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It is not a placebo because you take the prescription to a pharmacy of your choice and have it filled

So, at least with the trail that you participated in, it was a medication that is available to people – but just used for different disorders? (not a new med under FDA trail approval

It is an approved FDA medication. The trial is for its effects on HPPD which is an off lable use. Therefore the caution and strict guidelines, like having your liver function checked before the trial. Note it is a trial. It is for data gathering. Not for prescribing the med for continued use. At least at this point.

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I felt so "myself" that I cried tears of joy for the 2+ hours that the drug worked. You would think that I'd be fixed on taking the medication in a continual basis but reason has outweighed desire as the drug IMHO is not meant for long term use unless you suffer from other neurological conditions.

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  • 3 weeks later...

Hey Swamp.

I live in the Boston area and hope to see Dr. A sometime soon.

Would you mind if I ask how he charged you for the visit?

Was it all out of pocket?

Just a report as to how the trial was...

I sat in front of Dr. A and for the first time in 14 years someone told me I have HPPD. That in itself was well worth the trip. I now don't have to convince doctors and psychologists that I have some strange disorder that none of them have ever heard of. Obviously I can't say the name of the drug that I was given but I can tell you this; the drug was never meant as a cure all. It was more of a spot treatment and its half life was less then a couple of hours and has the potential to be pretty harsh on the liver. This trial was obviously about defining mechanisms of HPPD and I was happy to be a part of it even though I was in the minority of people who the drug didn't help.

Dr. A is a brilliant man, but he is a man nonetheless. I have been suffering some pretty heavy depression, frustration,anxiety and insomnia for the last several months, which the depression and frustration was very new to me. After talking with him, I was a bit surprised at his suggestions. He first told me that he didn't have any firm evidence that SSRIs are contraindicated in HPPD, and if clinically needed, he would treat many folks with them without difficulty. Obviously we are all different, but I know from my experience that effexor made me think I was dying and I was a bit surprised that he was against, or unaware of, what I may have mistakingly thought was a staple of HPPD lore. He then made the suggestion that I get on a daily low dose of Klonopin and refuted any ideas of developing addiction or withdrawals from the drug, which knowing of a lot of users experiences here is pretty difficult pill to swallow (pun intended). I was very surprised but I do understand that when you put someone up on a pedestal as I had with him that finding out he isn't perfect is all the more disheartening.

Above all, it was a great experience and he was extremely knowledgeable and I suggest doing the trial if only to finally get a diagnosis and see the awesome Boston area. Me and my wife spent 6 days there and it was by far the best vacation I have had in awhile. I was able to get him to talk to my psychologist and finally say I have HPPD and that I need CBT over SSRI for my mild depression.

Please believe me when I say that I am not bashing Dr. A. I thought that the expense was so well worth it to talk to the man. I just wanted to share my experience and thoughts.

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Great post David.

I would like to hear from/about someone who is taking this med as a daily medication or if Abraham even allows this.

Just wanted to add this to answer Merkan. It is not now used as a daily med. Dr. Abraham is doing a trial to gather statistical information. It is usually a one off med just for the trial. It is also not a practical drug since the effects, if work for a person, are only for 2 hours. After this trial a larger trial , more participants. Then maybe use for certain times of day for the 2 hour effect or another med that lasts longer. Don't have that information.

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  • 2 weeks later...

There are a few substances that each have different methods allowing a researcher to essentially "hone" in on an area of a circuit that is improperly functioning. I have a great schematic of the brain systems, the drugs involved, and how they affect each system.

I have limited my communication with Dr. Abraham on this topic for many reasons, but did advise I would advertise that something is being researched. I will write more about this in the HPPDresearch section.

- Best to Everyone!

David

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Helping pay for the web site can be arranged, and perhaps even through the HPPD Foundation as a tax-deductable donation. If the amount is >$500 then please contact me about other options. I will be discussing with the leadership of the HPPD Foundation on accepting any donations to help pay for certain regular costs and also to help pay for trips to Boston.

David

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There are a few substances that each have different methods allowing a researcher to essentially "hone" in on an area of a circuit that is improperly functioning. I have a great schematic of the brain systems, the drugs involved, and how they affect each system.

I have limited my communication with Dr. Abraham on this topic for many reasons, but did advise I would advertise that something is being researched. I will write more about this in the HPPDresearch section.

- Best to Everyone!

David

David, is this information, the drugs and mechanisms, available? I may be able to explore trials with my neurologist.

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  • 2 months later...
  • 3 months later...
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  • 3 weeks later...

Hey everyone,

Just had a consult in Boston (well Lexington) with Dr. Abraham. The trip was well worth it. As many have posted before, it is a great experience because for the first time you are not explaining to a Dr. what your disorder/disease is! He is extremely knowledgeable and I find his perspective on it to not be sugar coated, but at the same time we were able to discuss it from various persepctives; possibly etiology, neurological basis, likelihood that it is genetically encoded, prognosis for recovery, methods of treatment. I am in research myself and he recognized that, thus our discussion was more fruitful than any one I've had in 6+ years in academia. Seriously. Dr. Abraham does not claim to know the absolute reason for anything, but like a keen scientist has made inferrential observations, both from experiements and the subjective data he has collected from patients.

Recently I had been having some problems with my doctor at home who did not validate the existence of HPPD. Well, that's taken care of. Plus, wherever I move to, I will have a note from him that will help me with whatever treatment path is deemed best for treating HPPD (if at all) as well as documenting that I am not a paranoid hypochondriac. He believes in collaborative efforts with health care professionals and I couldn't agree more with that since for many of us, we know more about HPPD than the doctor treating us. Being able to encourage them to educate themselves on the matter is critical.

FTR, I did the drug trial. I do have visuals and recently I've been on a bad/rapid/too large drop WD (bad doctor imposed) from clon so they've been quite noticeable. I can say it had no significant benefit to me although I did "feel" better for a good 2 hours. I think in my case, clonazepam treats my symptoms better and I did realize that the drug does in fact reduce my visuals. I think, however, since everyone's HPPD is different and responsive to different receptor-specific interactions that the drug has potential, even just from a theorhetical perspective. It's totally optional, but I just wanted to see if it did anything.

I think it's very important that those of us in the HPPD community spread the word as much as possible. Obviously David and others have done wonders. It's time for the next generation of HPPD-afflicted people to do our part in making it part of the medical lexicon. Collecting as much medical literature on the subject as well as coherent anectodal material will go a long way. The sticky on this board is a great achievement! The biggest things that oppose HPPD being validated by the common doctor are IMO:

- stigma of drug use

- other drug users dismissing it (when they have an extremely/insignificant/temporary or FTM not technically valid case of HPPD)

- the opposition of the use of benzos by the medical community. This is a point where I think it's best to avoid them if you can, but for many people, myself included, they have helped. As long as you know what you're in for (and tbh I've not had a bad experience with them aside from my clinic doctor dropping me 30% in 20 days).

- DSM IV needs to be updated. There's so much more information that should be included so that doctors don't distort what it currently says.

- There should be a discussion of the grades of HPPD. Some of us have it so bad we can't function, some of us can get through our lives with the acceptance of a few discomforting symptoms, etc.

- We should include the discussion that HPPD is visual but often presents with comorbid symptoms. For me the visuals are not the worst part, it's the muscle tension, dissociation, dizziness, which (as Dr. A and I discussed) are somato-physical manifestations of anxiety (I have no psychological anxiety). Thus it is often an anxiety-linked disorder

There have been a lot of HPPD warriors and there are to be a great number of HPPD sufferers in the future. In order for us not to require going to see Dr. Abraham, who will one day not be able to help us as he is now, we need to push the agenda.

As for those who think he's doing nothing about advancing research in the area, I strongly disagree. He made me aware of some very interesting findings that I think are kernels for future discoveries in treatment. He really is a very kind, knowledgeable and FWIW cool guy in the way he approaches medical science. Being close to that field, I really appreciate his method.

BTW there is no placebo in this trial and he fully admits this is a flaw in the experimental design. Still, I think those who do it either notice a difference or don't. For the rigours of a scientific study, one can't claim anything, but you can see trends.

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It is good to get documentation that you are not simply nuts (the common answer doctors have instead of admitting 'I do not know')

Too bad you could do the drug trial without Klonopin (thought a person had to be off all meds) but it is understandable in your situation.

As far as benzos - they can be a lifesaver yet the medical community is deeply split. Some doctors are scared to death of them. Others prescribe them often and there isn't any real problem (other than never make sudden drops).

There should be a discussion of the grades of HPPD

This would help both research and each individual looking for help. It would be helpful if there was a chart or table of symptoms ... as well as pictures to help people to communicate (standardize) their symptoms - much of them are difficult to describe (even between ourselves as fellow sufferers).

As far as drug trials go - there is a wealth of information that can be gathered empirically (trends) without going 'reductionist crazy' - the brain is too complex to be distilled down to one possiblitiy.

Overall you seem to have had a productive appointment. And yes, he must be around 70 so won't be available forever.

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  • 2 weeks later...
  • 3 weeks later...

This may be somewhat off topic but I think it's related.

Given I've seen Dr. Abraham and it's been worth every penny, there are some hurdles that one might have to face afterwards. Since seeing him, he wrote an official letter giving a report of our meeting and suggested treatment (i.e. klonopin works for me, so continue treatment and in my case return to a stable dose -- I had been forced into a taper by a clinic doc who didn't believe in/care about HPPD).

It's been two weeks since I was returned to the last dose I was stable at (3.5mg/day). I've improved, but I'm not back to baseline. I cannot emphasize how solid by baseline was before the taper. There was no tolerance, I was doing great (and I had previously been at 4). There are two possibilities (please PM me if you have any insight):

1) it takes longer than 2 weeks for the increase to reverse the damage of 5 months of a failed taper (lowest I went was 2.75). Note that steady state levels should be attained by 10 days max.

2) The trauma of the taper could have desensitized me such that I need a higher dose (which is a situation that royally pisses me off due to the irony).

In any case, this is what my doctor is now coming up with to rule out possibly going back to my dose of 4mg/day if I don't stabilize here:

- I'm feeling what I want to feel

- you can't prescribe benzos long term (when she said "you can treat chronic disorders longterm with clonazepam", verbatim, before I got her Dr. A's note that HPPD can be chronic)

- it's (STILL) in my head, I should do therapy instead

- Dr. Abraham has a closed opinion and he only suggests what he thinks works and is narrow-minded

The point of my post is underscored in the last point and how absolutely idiotic it is. This was the sequence of events:

me: It's been 9 weeks since the taper, I'm going through hell, I think we can conclude that my underlying condition still exists strongly

dr: the symtoms of WD overlap too much to say

me: That's why I waited 9 weeks. That's long enough to stabilize from a reduction from 3.5 to 2.75. (0.25 every 10 days 3 times, not all at once)

dr: I want you off clonazepam, that's my mission, your disorder is not chronic, I looked it up online

me: (in utter disbelief) That's not factual. *Gave her lots of evidence to contradict*. Also, I have an appointment with the leading researcher in HPPD in Boston. He will be able to support the fact that HPPD is real, that I have it and evaluate my situation

dr: Ok, go do that and come back to see me

went, after a LOT of having to debate the issue, she returned me to 3.5. Now at this point I'm grateful that I'm even able to get to this point and this is two weeks ago. In the meantime, I came up to 3.

So it's been over 2 weeks, I don't feel anywhere near normal (it's better ,but when you're not at baseline it's almost just as bad), but I'll give it time (again, advice on what I should expect timeframe-wise given I've increased to the last known working dose is appreciated, PM plz), I informed her of this and then she went on about the whole "my mission is for you to be on anything but benzos/Dr. Abraham's note is just a suggestion and if he believes in it, why didn't he prescribe you a year's supply?". Note I don't live close to Boston or even in the US.

This is just an example of a situation one might face, i.e. even the opinion of the expert in a condition, a seasoned and highly lauded and vetted professional in the field of psychiatry can be dismissed by a simple clinic doctor just because they don't feel like putting themselves in an uncomfortable position (some Dr. overprescribe benzos, this is the opposite situation as I wouldn't be going through this 5 months later if her taper idea was never forced on me).

If it stays this way for over a month, I guess I'll write to Dr. Abraham again to ask him what I should do in a situation where the doctor doesn't even take HIS advice. FTR, he's not someone who says klonopin is a must. HE evaluates on a case by case basis and in my case I never had any problems with it AND more importantly it works great for me (no side effects). Some may not need benzos at all. As I posted earlier, everyone's HPPD is different. Mine is a certain type such that I cannot live a normal life without pharmacological help. Dr. A and I even discussed the issue of Drs. who are against benzos and he mentioned what a crock it is to generalize that they are bad for everyone and that it's a big problem in the medical field.

Overall I guess what I'm saying is that whatever your treatment option is, even after getting diagnosed by Dr. Abraham, make sure you have a doctor who will work with the advice Dr. A gives them. Some of them are incredibly self-righteous and stubborn, particularly when they aren't sure about what they're doing, that they won't even listen to him. It would really help to have a network of "HPPD-friendly" doctors and going back to a previous comment of mine after seeing Dr. Abraham -- the word on the street about HPPD is still not out and too many doctors are completely sheltered to it's existence and options for treatment. I can't think of it changing in any other way except unfortunately, the increase in the number of people reporting HPPD to their doctors and it being treated as a distinct and diverse disorder separate from psychosis or whatever else its swept into the same category as. It's not just about benzos, it's about whatever treatment YOU and Dr. A (if you get to see him) know is right for you and I've seen many of us chose different paths and have them work wonderfully. Unfortunately, not everyone has access to a pdoc or even multiple if one won't listen (I can't even get a pdoc referral for another 2-3 months, it's absurd).

Still can't believe after all this work to go and see him, at the end of the day I have to hear from the only person who can help me -- "It's all in your head"

At the same time, I'd be suffering a hell of a lot more if I hadn't made the trip to see Dr. A. I hope in the future a new doctor might not fail me so hard.

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  • 3 weeks later...

Hey rollingregret, that's what I'm afraid of, that my doctor will tell me "it's all in your head" even after I see Dr A.

In the end, my doctor came around to Dr. A's advice. Last time I saw her (~two weeks ago) she said "I have now determined that you have HPPD and should be treated with clonazepam". Unfortunately, probably wayyyyyyyy too late. Dunno if anyone has any info about this, but given I basically waited 5 months to (be allowed to) go back to my original dose after some significant cutting, have I permanently lost the ability for klonopin to work for me? It's exactly 13 days since I got back to 4mg. Improvement but still symptomatic.

Having Dr. Abraham's note and diagnosis and even advice is worth it IMO. The one thing that is somewhat problematic right now is that after these 6 months of going through the motions and suffering and trying to get my doctor to realize that my HPPD is still around and that I require K to treat it, I have potentially developed some sort of tolerancer/resistance/prolonged wd, whatever you want to call it (maybe it's a flar up of my symptoms such that I need an even higher dose than 4). I've been in touch with Dr. A since to ask him about his thoughts on what's going on with me and while when we met he was of the opinion that tolerance generally doesn't happen, he replied saying there are numerous mechanisms for neural adaptation. He did suggest that increasing the dose could remedy the situation. The benzo boards have a lot of people (if not all) who make cuts that thow them off big time and can never recover due to some adaptation. Updosing doesn't seem to help in their cases. I have no idea what to do and while it would really help if he could help me figure things out, I think I've overstepped my number of questions, given that if you see him, you pay for his services and I'm not sure that means emails down the road. He hasn't replied to my last one, whereas he's a very rapid responder in different situations. I totally understand and I'd even pay more if he could help me (which I suggested in my last email), but I'm not sure what he can do beyond telling you that you have HPPD and that klonopin is currently the best treatment.

If you haven't taken K before, my bet is that seeing him and getting a script will do wonders. If you're in a crazy bind like me, even getting a doctor to get you back up to your original dose might not help and then there's not much he (so far) seems to be willing to advise on.

Go see him if you can though. It could save your life.

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