Hppdsince1974

I think there are some excellent kernels of value and interest in what you say, though the question I have about all this is the failure of any MRI, CAT (I've had both) and possibly PET scans (can someone check?) to detect any cell death. So I am not sold on neurotoxicity and neuron death as primary factors in HPPD. BUT: you bring to mind another possible avenue of research with excellent bona fides: deep brain stimulation, and trans-cranial stimulation. Both are vetted, with published and verified results in the areas where they have been applied. For example, 100,000 Parkinsons patients are running experimental devices that SHUT OFF their tremors by stimulating the clusters of neurons responsible for the out-of-whack firing patterns. What if, instead of cell death, a "malformed" but resonant pattern of firing has been set up amongst groups of neurons, causing the responses that developed during intoxication to return and persist - and what if electrical stimulation would disrupt the resonant pattern and extinguish the misfirings, hence the symptoms? I have to say, my HPPD has been much less an issue for me since my breakdown and subsequent electro-shock. Think about it.

We are all on a spectrum, and it changes over time. If you can, grit your teeth and move forward a little bit at a time, a day at a time. All you have to do is cope for the next five minutes. Don't think past that. Or today. Today you will do something to make an improvement. Do one thing you enjoy, and one thing that may be difficult but good for you. Call that a good day. Repeat. My guess is that the chemical reaction we all experienced, and the effect it had on our neurochemistry and patterns of signal firing, is not going to respond to a single, simple approach to a cure. Think "whole body, mind" healing and do what you can.

I would be interested in producing, or marshalling resources to produce, a documentary piece on this problem, and our experiences. Kickstarter anyone? If I get some votes of agreement I'll start looking into it.

I forgot one really helpful strategy too: my vision therapist suggested that I use tinted glass to reduce light sensitivity, and since I seemed more sensitive to blue spectrum for afterimages and trails, I got yellow-tinted glasses. It definitely helped!

What about (gag) a google+ group? I would do it with a special pseudonym identity given how snooped everything is on google ...

Alice - interesting that you have the weird mouth sensations. I used to get those too, but more like my mouth was a huge cavern, and my tongue on my teeth felt "monstrous" in a way that I can't describe. Stay clean, get better

I know it's hard. 24 years into it, I could still feel it too. You have to just keep putting one foot in front of the other. Walk, eat well, rest. Try the valium. Try the PTSD treatments, etc. Keep trying!

No, I have not needed it on any regular basis. Sometimes I need a "fuktol" if you know what I mean, but that's just for life stress.

It sounds to me like you are doing the things that you must do, even in the face of anxiety and uncertainty. Good luck - keep trying, working, never give up.

The way I tihnk of it, having HPPD is traumatic, and causes the PTSD. I have found a lot of help in PTSD treatments, including EMDR.

I looked at it a few months ago and it looked pretty dormant/defunct. Just what ARE the numbers, how much critical mass can be generated around this subject, one wonders ... ?

I posted the things that helped me over the course of 40 years dealing with HPPD. It's in the GENERAL section, page 3.

Thank you, and good luck to you...!

hahahah I posted in the GENERAL section. I truly, sincerely, hope people find it helpful. Don't hesitate to contact me regarding any of it.

Several months ago I mentioned in the introduction forum that I had dealt with HPPD since about 1974 and have for the most part come through it all successfully, though not unscathed by any means. I said I'd share the list of thing that I feel helped me, with the hope that others can find some help too. ---- * Intro: My HPPD started after I'd taken many acid and other hallucinogen trips, smoked a ton of weed, and done lots of other regrettable things over the course of a few years starting at age 14 or 15. This was way before hppd was on anyone's radar. We heard stories of people who tripped and never came down, but didn't believe them. A couple weeks after a particularly unpleasant, anxious acid trip, I started to feel like I was tripping, had visual snow, trails, a feeling of impending disaster, depersonlization, all the classic symptoms. My HPPD had started. * First stop, psychiatrist: I was prescribed antipsychotics, possibly Thorazine at first, then finally settled on Stelzine, with Artane to prevent tardive dyskenisia. For the next several weeks to couple of months, I suffered terribly with the symptoms, which the drugs did nothing to alleviate, as well as the effects of the drugs themselves. Then, on a followup visit to the Dr., he cruelly and dismissively said words to the effect that I was way more fucked up than I thought I was. * Second, fighting back: That catalyzed me - I was going to beat this! THIS WAS THE FIRST STEP TOWARDS HEALING. I vowed that I was going to clean up, get off the antipsychotics, and get my act together. I started with all the usual "good lifestyle" choices: eat right! rest! exercise! And I think this cannot be overemphasized. * Third, refusing to give in: So now I started a long process of simply forcing myself back to normalcy as best I could. I tried various supplements and so forth: even put eggshells in my omelettes because I thought the calcium would help. I don't think anything really did, outside the fundamentals - again: eat right, rest, exercise. I found that walking, hiking, biking was excellent therapy. These basic motor skills are unharmed by the drug effects, unlike things like reading and driving, so were a good basic fallback. Plus the release of endorphins is helpful. Do it. Do it as much as you can. When I would have bad acid trips, walking was about all that I could do, and it was helpful dealing with the HPPD. * Fourth, getting involved: As difficult as it was, I forced myself to be in the world. I went to junior college. I got a girlfriend. The intellectual activity, and the emotional attachment were really helpful. I eventually felt that I was recovering, even though I still felt depersonalization, and still had visual artifacts, and I was able to function quite highly. I had simply given myself no other choice. There weren't any other treatment options, so I determined that if I was going to be on my own with this, I was going to just plug and plug away. * Fifth, staying clean: All this time, I assiduously stayed away from any sort of substances. I have to emphasize this to fellow HPPD sufferers: you cannot afford to put any more psychoactive material in your system. When I got too overconfident in my recovery, I started doing cocaine ... and relapsed. After a night of partying, I looked down at my hand and it had the far-away look of depersonalization, the dawn sky was fully speckled with snow, and I cried my eyes out when I crashed into bed. It was back. DON'T DO ANY SUBSTANCES. I had to regroup, get back with my program, go clean again, and work really damned hard to regain my lost ground. * Sixth, valium when it got bad: Eventjually developed a type of vertigo somewhere along the line, which may or may not have been related to the HPPD. It was like my peripheral vision was out of synch with my body, and it was a chronic feeling of being off balance and of the world moving. It was particularly horrible. So, I saw a vision perception specialist, and took valium - the only drug that ever helped any of my HPPD symptoms. I mention it here because even if the vertigo was not related, I assumed it meant that together with the HPPD it meant I was brain damaged. The valium definitely helped calm the panic about that. Still and all, through this I was able to complete college and live a quite reasonable existence in New York City. * Seventh, vision therapy: because the vertigo seemed vision related I went to a vision therapy specialist, but I think it was helpful with taking my focus away from HPPD visual symptoms. Search on the web for vision therapy modalities; I just briefly looked at http://www.visiontherapyrocks.com, and it looked like it had some good links. * BREAKDOWN * Then I had a psychotic depression. I have no doubt that the HPPD had made me susceptible. But the short version is that I ended up hospitalized, then underwent ECT and was put on an antidepressant. * Eighth, recovering all over again, antidepressant therapy: I believe the ECT helped, as well as the medications. I have been taking carbamzepine and SSRI's (Prozac and Zoloft), and for the most part have been completely unbothered by my HPPD for many years now. Coming out of the depression was a slow road, and I'm sure it was related, but once recovered, my symptoms of HPPD no longer bother me, even when I am aware of trails, afterimages, or snow. The vertigo disappeared too! * Ninth, PTSD treatment: after several trying years, and some unrelated traumas, I decided to look into PTSD treatment. The treatment modality was hypnosis plus EMDR (look it up). In treatment, I realized how traumatic the experience of the drug use and the resulting HPPD had been. The trauma treament I underwent made a huge difference for me in reducing the intensity of my memories of the horror of those times, and helping me integrate more fully. * Tenth, ongoing work on my Self: I continue to work all the time on understanding my mind and feelings. My current work is around Focusing (http://www.focusing.org/newcomers.htm) and it is a useful tool for opening up to exploration of feeling impressions, and guiding one's travel through one's experience. We have worked on my history of HPPD symptoms and it has really helped me feel relief from some of the superstitious and irrational thoughts that were an unconscious burden I carried after all those years of trauma. ----- So that's my success story - I never got totally over the HPPD, and I continue to have personality difficulties that I think are related to all the drug use at such a young age. I still can see more prominent after-images than I like, I see visual snow, I can see faint trails. But I am free of the feelings of dread, free from the depersonalization, have had several long-lasting relationships, have several kids, a BA degree, six-figure income, and am here if I can help any of you! Recap: 1. Antipsychotics, probably not useful. 2. Fight Back! Make a committment that you are going to beat this. 3. Refuse to give up, stay on a program of eat right, rest, exercise, exercise, exercise. I found that sugary crap made symptoms worse. Do veggies! Lots. 4. Get involved. Even though you are in a bad state, try to force yourself to engage in any way you can. Chat up the grocery clerk if nothing else. Try to read, study, do things you (used to) enjoy. 5. Stay clean. Don't even think about doing a little of this or that. Even though coke is not a hallucinagen, doing it set me back years. 6. Try diazepam and related. I found no shame in relief through valium. Do it through your doctor. 7. Try various vision therapies. You can learn to change the focus of your attention, and a sympathetic vision therapist could be really helpful. 8. I underwent hard-core depression therapy, it's not something you can ask for at your Dr.'s office. But I wonder if ECT helped my HPPD! It's possible that the SSRI's and the Tegretol have helped. I just don't have clean data here, for obvious reasons. 9. Try PTSD/EMDR treatment. You are undergoing a traumatic experience, and the trauma just reinforces the HPPD as well. I believe that the PTSD nad EMDR treatments could be excellent help. If you contact me, I will provide a link to a specific practitioner who has MP3 recordings you can buy which may be helpful to you as they have been to me. If there is enough interest, I would contact this person and request a series of custom-made recordings for alleviating the stress, anxiety, and traumatic feelings that go with HPPD. 10. Try Focusing. "Clear a Space. Feel the feelings. See how you would characterise, describe the feeling. Find resonance with how you describe it. Ask yourself what makes it feel the way it does? What does the answer say about it? What does it need, and what is in the way of it feeling better?" This is somewhat like the line of thought that goes into a focusing session, but check the website at focusing.org I hope this helps, even a little. Please let me know if you have any other questions, if you want to find out about the MP3's, or Focusing. Hang in there. Don't Give Up!

Hi all - it's been a long time! I apologize, no rest for the weary, been working a lot and kids and all that. I will go to the General forum if there's not a new better place. Wishing all a good and improving New Year.

Dr. Lewis : What's the latest on your efforts? I tried to reach you a couple of times, and today at least I'm unable to load the site page. Hope there is a way I can contribute.

I have a LONG list. I see you are the admin: tell me where to post it where we can get it the most visibility? The pharma section doesn't seem to be the right place, nor the introduction. Maybe a forum topic specifically for "what has helped me" may allow many of us who have traveled this road to give specific recommendations, from personal experience with practices that have helped.

Hi - I'm new to this forum, but not new to HPPD. I first started with it **40** years ago! I have some experience. Here's my advice: ** I had very limited success with natural supplements, and even went as far as eating eggshells to help boost my calcium levels. Yuck. But eating well should be a basic part of any recovery. High-protein, high-vegetable, low-carb diet. ** One thing that seemed to help a lot was walking. Seemed like no matter how bad it got, I could walk, hike, etc., and it at least helped keep me looking at the scenery and not the other crap going on in my visual field. ** For medication, I found a lot of relief taking valium back in the day. Yes it made me sleepy and dopey, but it was the only thing that helped reduce the anxiety at the time. ** I had a severe depression and got diagnosed antidepressants and an anti-seizure medication. I think it's had a really helpful long-term effect. ** Had a nasty time with the antipsychotics. I'd stay away from them. Horrible stuff. ** Find a therapist you can go to who specializes in PTSD! I went to a guy for many trauma experiences, starting with my HPPD. He helped me a great deal. Do it! We used a technique called EMDR, as well as relaxation and imagery recordings. Let me know if I can be of further help.

Hi folks - I feel like I practically invented HPPD sometimes. Nobody was reporting this sort of thing except in rumor and scare stories back then and nobody knew what to do for me. I've been through decades of experience with this now and want to use my struggle and experience to help others. Tell me how I can be of assistance.