LarryC

Hey guys, Good to hear from you. As with you I have had a rough time. Good to contact members from the other site. Best, Larry

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. 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.

And as I stated above, if you actually read my several posts to your questions or my sharing of experiences (look on the other threads too)I made it clear that the visual and other symptoms rduced signigicantly ot went away completely - their physical symptoms as I have said. I also related my own experience of this occuring and then coming back and I explained that the docs who know this phenomena said that it was not unusua. So as to your post which I just quoted, why do you continue asking the same question when it has been plainly answered.

And I have said this several times - recovered, symptoms significantly reduced or even gone to where they can not notice them even if they looked to see if they were there. No offense but you are not retaining what people spend their time to answer your questions. And you have the tendency to say the same thing again as if no one had steered you in the right direction, answered your inquiry or corrected you misunderstanding.

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?

ColForbin's statement below yours is absolutely true if you were able to see all the people who first got this and their approach to there situation. All your and everyone's effort to search the literature has resulted in no solution. So I do not understand your statement as to no hope if we just wait. Wait for what? All the theories have been put out there. The med profession knows what they are and do not have a soultion. So what are you or we going to do by gathering information. There are many, many illnesses that the biological knowledge of the cause and mechanism are know and there is no effective treatment, let alone a cure. Gather all the info you want. We have done that already and are still in the same place we would have been had we just took care of ourselves body and mind instead of trying to be super scientist. Just think a moment. Do you know how much time/effort and money it would cost a very skilled medical researcher to have testable theory for this ailment (other than what exists now)? Do you know that if that actually happened by some very knowledgable scientists what the next step is after they were able to prove their theory? There would be the discovery phase - the phase of discovering a treatment- a medication. This step takes a very long time, a high degree of knowledge in biology, biochemistry neuorology and more and whole bunch of money. Then the next step is trials for effectiveness and safety. And then get approval for the treatment. This takes a long, long time and hundreds of millions of dollars.

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

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

There are many theories, many, many have been posted on the other board before it all went away. What is wrong is that they don't all agree, you wrap your mind around information you are not qualified to make a judgement(you would not diagnose a patient, including yourself, who had a condition if you were not a licensed medical professional or scientist in the particular field or even a very sharp dude.) But most important is that in the end, it is just a bunch of data, mostly incorrect that you spend hours going over and you are still left with the condition as before. Instead you can work on helping yourself in other ways. It certainly seems that you are not paying attention to the peoples posts e.g. you post THERE IS NO HOPE after others gave you the best advice and document information on the condition that you will probably find even if you look for a long time. That is just an example, but it is the tone you are carrying. We all know what it is to go throufg this at the beginning stages so so far, keep trying to get through to yo

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.

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.

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

Bad idea in my knowledge. First the dose is too high to be the first day or actually one dose. You would probably just feel tired and fall asleep. Second, usually beside going up over time from low to 2mg to 4mg a day, from what I know, it can take time before the affects on the visual system in the brain, i.e. before you gain benefits other than reduced anxiety.

This was the kind of response to the same question on the other board. There is no physical advantage. Just some people come to terms with it and have more understanding and compassion for others with different problems

One, as the poster before you said you are repeating yourself even after people answer you. Second, I did not take a drug. I was better for many years. I went on a hike, hiking up mountain. I strained my neck and I was weak and jerked the neck on the way down the mountain which added to the strain on my neck. the rest i already explained what the docs said. And there is no way anyone is going to convince you that there is hope for you. It has been told to you several times already that it may just go away for you or at least reduce greatly. You have only had this for a short time, a few months. You need to chill and stop all the negativity and anxiety and realize it will take time for any change to occur. Do remember, although th brain/nervous system can heal to a great extent depending on what happened to it, it is the slowest system in the body to heal.

No, some people did get very good recovery from keppra at least. And as far as brain damage, it is a matter of definition or semantics. Without a doubt, it can be called a brain/bio-neuro chemical dysfunction. Damage or dysfunction, it is the kind that can and has got better for many over the years as I have said 3 or more times already. Sorry but I will not repeat myself again. Dr Abraham has been said to have clinical evidence that 50% of is patients have recovered within 5 years.

Just to add a little education, all the tons of scientific data that was posted on the old site was about the effects on the brain. So everyone know that it is in the brain, a CNS disfuncttion, if not damage. But if it is damage, it has been shown to be reversable in about 1/2 the cases. I only took LSD once also. No other drugs of that class. And i paid for it. Fair or not , it is what happened. There is reversal of this problem. It is without a doubt. The longer that you have it though , the less likely it is that it will be alleviated. As a doc told me, it is a complex issue and there are periods of alleviation of symptoms and recurrance. I have said that I had two long periods of alleviation. Over 95%, to where I could not notice anything even under the most favorable lighting circumstances for hppd symptoms to be seen. I screwed myself up during the hike and strain (which I was told by an hppd knowledgable and experienced doc, is know to bring back or worsen symptoms) (and also by another doc a neoropthalmologist saying I probably added acephalegic migraine to my condition). It has been the longest time and the worst conditions and I now do not have confidence that I will have reversal. You are going through the mental/emotional process that most people who just start getting this problem go through.

Medications that helped. I do not remember any individual med that worked in a number of cases, i.e repeatable. That is why I would not remember. The only one that we were keeping an eye on was Keppra and the results were all over the chart. From a few having great results to no result and to those who could not take the side effects. I can tell you only that nothing I ever tried helped any visual/auditory symptom. It seemed that time passing helped the body reregulate for some, not all. But when you experience the change hppd does to you, the tendency is to want a reliable progressive fix. Many, many people came on and off that board, looking for answers. When they did noy find anymore than many discussions, theories, personal experiences, they asked a few questions and left. i.e. they found no informaion on a repeatable treatment. For all practical purposes, the info is not availble from the other board. David may have some important info and may release some of it at his discretion. You may want to ask 1998 and others if my assesment of the med "cures" is accurate from my memory. Just think, if there was some meds that worked for a number of people, instead of one off, wouldn't it be used more often and known about?

I don't know if you were asking me. I do remember saying that in another thread. It seemed that certain supplements helped some people and others took them and they said it made no difference or got worse. The overall best advice I remember is time and living healthy. No more drugs, little or no alchohol, enough sleep but not over sleeping, and excercise. Note that strenuous excercise seemed to make things worse, at least temporarily, for many. Some like doing yoga because it oxygenates the blood, uses the muscles and also calms the system. Which brings me to the stress. People say do what you can to reduce stress because stress seems to make it worse. Some use meditation and other stress relieving techniques and say it reduces symptoms. Some have had beefits from Cognitive behavioral therapy or CBT. Chi Kung can also help balance the system and induce a relaxation response.

No head pressure for a long time. Had some at the onset of this recourance for a while. Then gone. The other symptoms came over time as I have mentioned before.

Some bit of hope. My after images diminished very much. The LED lights and trails are still very strong. HPPD + other comorbid issues seemed to cause my static (night time only, day it is like a vibration) and the constant ringing in the ears.

That is the first thing you should check for. In the original forum, the section read this first said that the visual changes and other symptoms can have many causes. An MRI from your neurologist is recommended andother test to rule out other causes. Also said was that a medical professional needs to diagnose you as having HPPD.

Not everyone gets static. I just wrote a lenghthy response but it got lost. It explained th 3 episodes I had and noe have for the longest time. I did not have static the first to times. I had static develop this time and it dveloped 1 1/2 years after the initial symptoms occurred. And now I also have years of tinnitus which happened over a year after the static. The afterimage only to the right is unusual. Maybe you are oriented to that side and notice it more. All docs say tha if it is in both eyes then it is in the cns, the brain, otherwise it can be in the particular eye and connecting nerves.

WindScar, I feel the need to point out, that you being new to all this and not having seen the previous board and all its contents would not know that everything you are saying has been hashed out over and over for those of us who have had this condition for a while and even much longer than just a while. If you had access to the old forum post, you would see that the same questions and statements you are expressing came up over and over again from new people to this condition and that was mostly due to them not reading post of the tons of scientific information/studies, much sharing of many consultations with many types of medical professionals, individual theories, some backed up with good research from the web. I can only surmise that the many members of that board see this new one, with virtually all the information and dialogue gone, having nothing more to add and are a bit tired of repeating themselves. They have been at this for years in a large number of cases. That being my take on it, then if it is apathy it is because of what a just wrote above. I do not think it is apathy though but fatigue. You would find it hard to believe how much information over the years was on that board. Papers published by the pioneers of the study of hppd (much more extensive knowledge and educated theories than any of us even though many of us are scientifically trained and well versed), clinicians who treated many people with hppd and with varying degrees of success and individual stories of some success. You are actually going through what many or most people go through when they have this condition for a while and are gong through the phases of coming to terms with it. I do not discourage you from posting anything but just want to give you a background so you may know why people may not get too much into dialog about certain aspects that you post.