LarryC

got keppra, start tonight.

Hope it is helpful for you. Keep all posted pls. Not something I could tolerate but helped several people on the site.

Thought you said you were going to the doc and were getting naltrexone?

I would not attempt a trial with Remeron. This med affects the 5ht2a receptors. Studies have been done where an anti phsychotic (risperidol?) which affected the same receptor had caused afterimages in people who did not have hppd.

On another board, there was a person who had done much lsd and other drugs and did not have any after effects visually. His doctor put him on Remeron for depression and he developed the whole spectrum of hppd visuals. May be anicdotal but it is not imo worth the risk.

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.

1. What did you use/do?

2. All visuals gone or anything left (trais, afterimages...)?

3. Got ride of HPPD's sub-effects (anxiety, depression, cognitive issues, etc)?

4. Any side effect of whatever you have done to recover or you're simply 100%?

Sorry for having lots of topics around but it seems like I'm the only one who come here =\

Mine reduced by 95% a couple/3 of years after it started from my first and only LSD trip.

Seven years later from when I took the LSD, it came back much worse. Not sure what the trigger was. About 3 years later it was back to the reduced state, maybe a little more than the first time it went. It got better from time, diet of much greens and vitamin A foods. I also moved for a job. Stress reduction. I had several years of virtually HPPD free.

A strenuos hike and much stress brought it back again with more symptoms than ever before. It has not gone this time. I think I shocked my brain from repetative stress on my neck from tripping/falling down the mountain.

I don't think the treatment was meant to be a cure but to prove the theory on the drugs potential efficacy and direct researchers on where to go from here.

I spoke (had a phone consultation) with Dr. Abraham. He mentioned that it is not a cure. And that the effect, if working, lasts for 2 hours. He is working on a hypothesis of another mechanism through another med that works through a different biochemical channel than klonopin. He said that if it works for a person then the benefit is that they get a couple of hours to do productive things, use a computor without the visual distortion for example. If it works on enough people then the mechanism is valid and more work would need be done to find a drug that would work for a longer time.

Currently in the trials, he said that it has affected positively 30 to 50% of the trial participants.

I was going to have a trial with my neurologist with the assistance of Dr. Abraham but I moved out of the area so that shot that possibility.

Find a good friendly environment in CA. Some are great, some are a challange to get through the day. I have found SF areas to be enjoyable,active, creative and in general friendly. North Beach is one of the top places in the country for quality of living.. Many musicians there and plenty of venues in SF.

Epstein Barr should be tested for CFS

It is difficult to say for sure. Reason I say that is because the extreme physical abilities and taxing the body starts to be felt in the body after about 28. I felt it due to tae kwon do. Using everything I had I was fine until after 28. My teacher who fought in Korea in full contact tournements told me how he changed at the end of his twenties.

Also, hppd knocks the hell out of me these days. And klono is most almost definately causing you to feel any exertion to a greater extent.

Thanks guys.

Visual, I would like to know more about your treatment and the effects on you.

1998, thanks for that very helpful information. Some disturbing thing just happened the other day. I had a book that had red squares on a green cover. Moving the book, the red squares came off the book, you know th affect. I hope you are correct in my case.

I started the valium and it was worse. Then my doc called and said she spoke to a specialist and said that there really is not a substitute and that I should not change the med. I should ween off from that.

Larry

My thread still shows the last entry as being by Ludwig days ago even though a few people have added replies. If anyon has more to add please do so and don't look at when the last entry is noted on the menu page.

Ludwig,

Thanks for the information. I had it for quite a while when this re trigerring of hppd occurred years ago. It did get much better (that visual anyway) so don't you get discouraged. I had 3 bouts of hppd. This is the longest and does not seem like there is any likelyhood of alleviating like it had the other two time, because of the length of time and the various vision problems (and tinnitus).

You may be correct as to it being from the klonopin withdrawel since it is not working on anxiety anymore. It never helped my visuals, so I would have ben better off if I never used it since it did not help visuals (static, phosphenes, vibrations, which are my bicg issues that I never had in my previous episodes of hppd symptoms. Hang in there yourself.

Penny, thanks also.

Larry

When I add a reply, (like on a thread I started about Benzo addiction, the last added note reply does not change. I added a couple and it is stuck on a reply added days ago. ????

Just a question more before saying anything else, did you feel this WD before using Nucynta?

No. And it was not as I can recall just after I stopped nucynta, But also I had quit smoking completely in February and started to feel it then, after I stopped the patch a month after that. I was on Nucynta for about 1 1/2 months.

The strange thing is the way it all starts. Like in 1999 when I did not have hppd symptoms but was on xanax. Just one day I all of a sudden became fearful. It just got worse after that. Until I got a med from a psych. I could not take that med now cause it is contra indicated for hppd.

Edit: Iremember what the drug that helped way bac when. It was Remeron. While it di have no negative effect then as I was not experiencing the hppd relapse, it affects the 5ht2a receptors and can in many cases make hppd worse.

I was an idiot to take Nucynta in any case.

not showing up as the last post.

Thanks guys. First, my very expensive doctor did some research and prescribe valium to change and then taper. It is no better. The fear factor is the same or worse.

Merkan, I think I have been on .25 mg/3-4 times a day of klonopin for more than 1 year but less than two years.

Ludwig, I mean that from the movement of the obects on the tv having become smooth and kind of normal, it I can see the movement as Not smooth, kind of stop action - see the movement from position A to B to C .. as distinct movements with a break in the motion, and also something like an afterimage, more like motion blurness/blurring.

The starbursts on lights had gone away completely and now back after years. I think it has something to do with excess water on the eyes but don't know why I would have that. Also the neorepinerine.

Just seems like benzo addiction and withdrawl. I heard that at a certain point, benzos become unable to control the level of addiction they cause. The thing about withdrawl is, even though its one of the worst feelings ever, it ends.

Br0k3nS42nt, I hope you are right!

The "static" for me during this re triggered hppd cam over a year after the afterimages. One morning I woke up and the darkened room was spotted with white specs all over my field of vision. I thanged to more of a phosphene like darkness with mini/micro phosphenes of orange and a bit yellow and blak. It is a vibration like experienc in the day. It changed into that when on medication and had some body work. I am suspecting that for me at least ith has to do with pressure on the optic nerve from the base of the skull. I got the retriggering of hppd after a strenuous hike and anxiety.

Never had the "static" during the other episode though, only afterimages and such.

Before this long standing episode, I was minimal hppd visuals for 18 years. It had been bad for 3 years and diminished to close to normal.

Fantastic David, congratulations on all your hard work! Very Cool.

What's wrong with picture 2 and 3? Menu and the car on the road?

Great David, congratulations.

Let's talk soon as discussed.

How long have you relapsed? Did you smoke or anything during your time of remiss?

This relapse, the reason I came to this board, started slowly April/May 2003. So 8 years.

No drugs when it started. It started after I over did it on a hike and also had an arguement with a friend that same day. Physically and emotionally stress. No meds at the time either. I stopped nuerontin for fibromyalgia a few months before as it was contributing to major weight gain.

The symptoms started slowly. I first noticed trails on LED light which were always the easist to detect. Then the after images go worse.

Over a year later, near end of 2004, I woke up and there were like dots in the black dark room. That then progressed to vibrations in the light and then the entire night vision being phosphene like. Never had that in my previous episodes. Was on some medications at that time before I woke up. BP meds and anti hppd meds (hah) and a 1/4 pill muscle relaxor.

Then in 2005 my ears started to ring. And like the static like vision has not got any better. The ringing is worse now than ever.

So this relapse is very different and has been for much longer. I think it has a mechanical trigger component and a pressure/pulling on some nerves or groups of cells.

I had been unhopeful the first two times, but it got better in a couple/three years.

This time I can not see how it could be like this or if anything could reduce symptoms.

What Shaolinbomber is experiencing is what, I may say many but don't know, have had happen to them, and to me.

I have the longest episode of hppd symptoms I ever had now. With more symptoms I ever had also.

But two time before this started again, it got better after 2 1/2 to 3 years; the after images, streaking lights, halos, ghosting ... went away to where they were unnoticable..i.e. not there anymore if I could not see them even looking to see them. The only thing, was when things moved past me above a certain speed, I did not know what it was supposed to look like to "normal" vision person.

My symptoms include a kind of static now for years (more like phophenes, which look lik vibration in the light and definately like mini/micro phosphenes over my entire visual field in the dark)

Just as a side note, I have had a few sessions of myofacial release on my upper body, neck, jaw, and after that, for a while my visual field was yellowish - from the work on my neck.

Final note, before the work, my vision has become worse for reasons??? All the starbursts halos and most afterimages had gone away but over the last few months has returned. Any comments on this?

I am not aware of free 10 retreats. Where did you find this?

When my after images were worse than they are now, I remember spuinting would reduce the afterimage.