LarryC

I do not understand what masking the symptoms means medically in this case. For an example, we do know that pain medications can stop or mask the pain but problem will still remain. And if not taken care of may get worse and cause furher problems. This what masking means in medical terms as one example. For hppd, the actual mechanism is not well understood. Lacking the exact science, medications that act on the probable brain dysfunction are used, and work for some. If it removes the symptoms in hppd patients then it is working as a treatment of the dysfunction, in some way correcting the neurological disorder. It may not be a cure though it can be an actual treatment. Not a mask. There are medications that lower blood pressure for example but do not cure it. The important thing is blood pressure is back to normal with medication. It is a treatment not a cure. It is not masking but compensating. The actual cause, especially if it is genetic, may not be curable, But if you are back to normal function (readings in this case) then it is an effective treatment. HPPD, The symptoms are not there, therefore it is an effective treatment if not a cure(would have to see how a person does off the medication after being on it for a certain length of time sucessfully eliminating symptoms) To me, for hppd, eliminating the symptoms is the goal and is a treatment, not a mask. Merkan is still fine and has his life back with no significant side effects or none to mention at all as far as I know.. That is the best definition of a cure.

Penny, I revised my post before this was available to me. Please re read above. Te sensitivity of meds and herbs can be from many causes for different bodies. I do remeber that Momof2 could not take antibiotics. I know I do not have any problems with them when needed. Merkan was in very bad shape as we know after the keaton tea, he was hospitalized nut was already a bad case of hppd. He had and has success with keppra and his symptoms have diminished greatly. He combines with klonopine. This just does not seem to then correlate with Candida or any fungis, virus or bacteria. He is actually doing fine. As I have said in my last modified post, I would like to here what your approach has been in brief and your changes over time more so than the theory part.

I am glad you are geting better for whatever reason. (Would not mind hearing yout self treatment and progress more in place of theories) Though I just can not see that explanation as a recovery reason for me and all those that suddenly or quickly got better, like myself, then it get worse from other obvious non ingested food/chimical causes. I did nothing different. I was hppd free(virtually or maybe completely as sometimes I thought my vision was not perfect but it was due to over observance) for 18 years. I smoked cigarettes before it went away and I smoked for the first 12 of the 18 years of it being gone. I drank as usual. Drinking did not spike or affect anything or bring back any symptom. What brought it back was pysical strain to my neck from over exertion. It was almost immediate. Then sypmtom worsened and I got more symptoms with time. Lerner had confirmed that the pressure on the neck and he also mentioned eyes can retrigger hppd symptoms. He says it is very complex and there are period of alleviation and recurrance Also It is almost saying LSD + Candida leads to HPPD. Candida is very common in America if you take a test for it. But over the years those tests have been suspect. So if many people have candida and keep taking lsd and do not get hppd, then the candida could only play a part role in it if it is real at all. You are very familiar with the other board, and you have seen some of the most diverse recovery stories. No one explanation for the causee/treatment and also what worked for one did not work for others as we are well aware, for example meds, let alone the personal cures.

I think neurontin makes most people tired at first. But I think I got used to it soon after and went up slowly. As to the visuals, I have only heard it making it slightly worse in some cases and much worse in a few cases. The counterintuitive issue with this is that it science wise probably should help hppd, due to gaba properties.

I think most of us long timers from the other board did not give up but may have given in, i.e. accept we have this, try to learn to cope, and keep looking for relief and try different approaches. Since ther is no magic pill, many have tried investigating thigs that aggrivate the conditionm analyze it and set out to make changes. Also much alternative methods of healing seem to have been attempted. Some met with success. It seem to be, for those persistant, that we go through phases of trial and error, effort and then rest about it all for a while until we then try something else. Since no one says this has to be permanent but we don't have the solution, it seems natural that people continue with trying to figure out ther own solution.

Many people have or have had Candida. It was or is a big deal for people and the diet change went on for many months. I am talking from experience from knowing health concious people who have restricted diets because of Candida. The counter thought/evidence is for the people who's symptoms gradually or more rapidly go away. With no change of diet that would indicate eliminating Candida. I was one of those people. It went away with no habit change in health practices or diet etc. I am one of the people that it then came back. Known to happen as per the docs who know about this from clinical experience. The second time it came back, it has not gone away. This came on suddenly ater too much exertion and then the symptoms increased over time. This started during a hike in 2003. The only other explanation from what Lerner's experience has told him and me, is that I may have got a bug bite during that hike.

Hey PennyA, Good to see you here. (noticed you did not say hello to me ). Don't hold your breaath on people checking in. Or if they do it usually is not for long. So far this new site, and I have been on this site for months, is a dismal failure. And I think I can find better ways to waste time. You just got here. Come frequently and you will see what I mean. The number of total posts should give you an indication as would the number of members. Hope you are doing well. Any changes from your last updates months ago?

David made a decision to make the content unavailable for reasons unknown to me. This site is to be a replacement for all the frequent posters and for support for new people. It is failing miserably.

Neurontin helps with mood if nothing else. Acouple or three time a day improves mood for several hppd people. It may make visuals slightly worse. You are to start at low doses. What is your prescription dose and hoe many times a day? Also with neurontin it seems that you need more over time.

No one can know that.

Hi Unknown Error, Good to hear from you again. The other site was down for a couple of months at least. Then David created this and practically no one comes here that were at the other site. I have been coming here for months and do not see the membership growing. All content from the other site is gone also, which is a bit dissapointing. Jay had started another site and wrote me an email about it. I asked him if he had known that the hppdonline site was back. He said his link did not work. He then decided not start a new site. He posted her once and only once. Merkan posted a couple of times bu that was a while ago. Maggy Tito also posted once. David started this site. Saga is administrator but does not post. No word from the others you mentioned as far as I remember. Take a look at the member list and see who you recognize. I was about to write another post saying that this site is very inactive, almost dead and I do not know what can be done to change that. Peace, Larry

Never under estimate the value of support from those who care about you. Yes it was very difficult for me. Yes I completed the bachelor's degree in Chemical Engineering in the normal amount of time. And I ended up with a cumulative index of 3.1/4.0 anyway.

Self effort meditation requires good instruction. My meditation is different and can't be learned in a book. But I do remember that mindfulnes meditation is used with success by many. You may be able to learn from a book. One book that is available (amongst many) I think the name is Mindfulness made easy. Do remember that mediation is not to be mental(choice of words). The goal is to experience stillness and inner silence which can not be done if the mind is batteling with itself. Also chi kung or also spelled qigoing is like a moving meditation which ends with a type of meditation. I recommend Chi-Lel which is a style of chi kung with a long name so it was shortend to Chi -lel. There is a reasonable priced dvd which trains you in the four major components, the last which is a standing meditation which is normally done after the movements.

Just to add more from my own experience towards Boogres, I also believe in signs or even omens but have no power or knowledge of what is to come anyway. I had to complete college with HPPD, my mother dying suddenly at an early age with no warning. I was in Engineering school (Chemical). I had no girlfriend and I also dealt with the sadness that my father and others had from the loss. I did get through it all. Sure it is tougher than all things being just average but there is strength that we don't even know we had.

You may want to think of it in this way; many things happen in our lies that we do not plan to happen. But whether our minds were involved in the planning of them happening or not, they happen anyway is it is to be.

Can't say if is bad in a dangerous way. Doesn't seem to be from all people who reported having it over the years I have heard from them. It seem that is only a symptom of HPPD that some people have and others don't. This true of other symptoms of HPPD.

Good point. Also, Jay had sent me an email a while ago saying that he was starting a site for HPPD. This after this site came back up. I asked him if he had visited here. He did not know about this site. He said that the link he had saved did not bring him here. That is a little confusing to me because it is the same name as before. So also, people may not be typing in this address anymore for some unknown reason. If they were long time members, would you think they would just check the URL instead of looking at Google?

Joe, I do not know what a functional MRI can tell relating to HPPD symptom cause/effect. It was suggested that I do one but not that the information would provide any help if something was not normal. I went for a neuroSpect scan rather than a PET scan. What value is the PET scan information for this condition. From previous information documented, the definitive test to say you have HPPD instead of something else was the qEEG. I had one and the reading indicated HPPD. For me, from now on, unless a test will show something that can be treated, I don't see the value in it.

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.

Neither those people in the various places or I have statistical data on rates of recovery so they don't know at all. I at least are going with information from Dr. Abraham who have treated patients for decades. He has been reported to have stated (by several people from the old site) that 50% of the people recover within 5 years. Also if you would put together other things I said, Lerner, as I have said here, that there are periods of alleviation and recurrance.

And this is repeated on other threads where people have said that people actually get better and wherever we say that and tell you that the data says that, including people's testimonials you say it is your opinion that they actually don't. Do you not think that people know how to gauge their own changes from what they saw with full blow hppd and compare it to what they have now?

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.

And you are forming an opinion without any information. Like knowing the many people who posted about their recovery, like I knew them from many conversations. On this board for example, there is Merkan. If you knew him via his posts and correspondence before and after you would surmize and have an opinion that he recovered. If you had respect and confidence for Dr.s Abraham and Lerner's judgement (and their testing methods,like you had mentioned) then you would say that recovery to normal or close to normal has happened and still does for some. The truth seems to be that your state of mind is very negative right now and immersed in your visuals and other symptoms. That is why you can not have confidence in real recovery. Now we are finished with it.

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.