VisualDude

Self control is something to be cultivated. It isn't easy but it is possible for everyone. Brain fog and focus problems can also make it harder. Work on good diet, exercise, and sleep habits. These are healthy and something to build on. Few things kill self-control as much as depression and feeling helpless. So make simple goals and plan on things to look forward to.

Welcome back, though sorry it is because you are feeling worse. In the end, you will have to decide and also work with whatever a doctor will help you with. That said, it would help to know how you responded to meds in the past. Have you tried any in the past? What were they and how did each one affect you? Also, if possible, it would be helpful to get some ideas why things got worse suddenly. It can be something as simple as hot weather and worry. And ideas about what is different from last month?

Caffeine has never had affects on my visuals. Sometimes a stiff (very strong) cup will make help me fall asleep. But my neurology seems to be unique among reports here

That would normally be good. Since I had allergies to soy and phosphatidylcholine suppliments are mainly derived from soy (and soy crops are mostly GMO now), I couldn't take it. The next step, phosphaticylserine was iffy but by the time in was GPC it worked well as described. The whole 'brain injury' topic gets some people upset. For sure, with HPPD, our brains no longer operate as they did. That said, people insist that LSD does NOT cause brain damage ... yet here we are. Weed is considered less potent than LSD yet many have HPPD and DPD from it. So, stuff that helps the body and brain to heal makes sense.

Review post #18 in http://hppdonline.com/index.php?/topic/785-strange-leg-sensations-tingling-burning/

For me Cabergeline seems to need both Sinemet and Amantadine to work well ... which is kind of annoying. But in 30 minutes of 0.25mg I 'see' improvements. I do best on 0.25 cab + 1/2 sinemet (25/100) 3 times a day, 50mg amantadine in the morning, and 300 mg gabapentin before bed. Yes, it is a major testosterone booster! At this point it something members can try. If you get any benefit, then its a matter of working out the dose and/or combination that is best. Just start with 1/2 pill and see how you do. Yes, it has a 3 day half life so often is taken just twice a week. So no one should rush it. It has the restriction of DO NOT TAKE meds that increase serotonin. Even stuff like tramadol increases serotonin. You can google to get a list of meds to avoid. It's side effects are typical for any dopamine increasing med. They can increase restless, nausea, etc. The one serious side effect of cabergeline occurs when a person takes high doses (>1mg/day) for long time (10+years), then there is a risk of heart valve damage (too much 5HT2B). Have you tried any other dopamine meds? It is curious about the 5HT2B receptor which is implicated in HPPD (and LSD). They found, at least in rats, that these receptors are in the amygdala. When scientists increase 5HT2B receptor activity, it decreases anxiety and rats become more social. Perhaps part of the anxiety problems that HPPDers face is due to this receptor being downregulated.

diphenhydramine would seem to be your problem, probably the anticholergic property (not to mention the overdosing). Try to find another way to sleep.

Perhaps the aspect of previously being asleep is the key factor. HPPD messes with the sleep, wake, attention, focus, and perception between these states. Both the above experiences are different than being a the grocery store and seeing monster after you, etc ...

Once and a while someone will pop by and say they've been free-tripping for years (even decades) and they are happy about it. But most of us find it a burden. Under the symptom list of HPPD are anxiety and depression. They say 'co-morbid' but for all practical purpose its the same package and most suffer from it. Nothing wrong with one saying they appreciate all they have learned about their mind and life. Its just tricky to say it in a way that doesn't offend. HPPDers are often dismissed by doctors - and even friends and family. That is bitter and makes for being sensitive about anything that can be construed as dismissive. In the end, people are looking for a cure. The intensity/severity of one's HPPD is a big factor. Someone with a broken arm is happy that it will heal in a couple months. A person with an amputated arm will not be so cheerful - the best they can say is they've learned to live with it (or rather without it). They aren't likely to enjoy someone saying that its great the lose the use of a limb. The word, 'acceptance' can be irritating because it has the idea of agreeing to receive it. Most find HPPD very disagreeable ... and would 'give it back' in a heartbeat. But the definition "willingness to tolerate a difficult or unpleasant situation" applies in the sense of learning to live with what you can't immediately change. HPPD can ruin a life. So it is important to focus on what you can do and find joy. This is where 'attitude' comes in. Dr A says that CBT for anxiety and depression it the most important treatment. Also, self blame is not something to keep carrying. Guilt is a tool to modify future actions (in this case stay away from drugs). It isn't supposed to be a burden carried for life to poke, prod and torture. One might feel even happy once they have learned to control most anxiety/depression. But expressing that cheerful relief can either encourage those who suffer (since they might see hope for themselves) or discourage, even enrage. Its how and when one expresses self.

It is good to try. I find it doesn't work for me without Sinemet. And then some amantadine helps. In April and May I took only these meds (no Keppra or anything else) in the day then gabapentin before bed. Felt the best in years. Because there is a serious possible side effect when taking moderate-to-large doses for years, am working on a combination to try to boost its effect so as to reduce the daily and cumulative dose. If you find it helps you significantly, then I'll come up with a document explaining long-term risks and how to reduce them. But for now, just try and see. Affordability is another factor. Through the local pharmacy it would cost me $1500 per month. Right now am getting it for $4 per month. Haven't heard from you in a while ... are you OK?

It would seem that most people would tend to 'rev-up' a little with Sinemet. However, if there is a dopamine 'shortage', then it can also calm - that effect is sometimes expressed with those who have ADD/ADHD. Frustratingly so, HPPD is complex. So a med (or herb extract) might help one symptom but make others worse. It is good to make a list of symptoms and then how each med affects them. You may end up with a combination that works for you. Herbs are complex and the amounts of each chemical are very small. Extracts will concentrate these as well as filter out some. Ironically, drugs tend to be the 'purest' thing one can take ... but also very strong. You might wish to try catuaba which seems to have dopaminergic effects.

Start a fashion statement ...

Perhaps Keppra would be a good next try, although it won't do anything for high blood pressure. Dopamine increasing meds lower blood pressure and are another direction to try.

Keppra is quite safe but it is sedating. As far a light sensitivity, gabapentin was helpful for me.

Each day has it's own anxiety. Just take one day at a time and make each day enjoyable.

Have you ever tried meds? If so, how did they affect you?

Not sure how one would do ketogenic type diet and be vegetarian. That said, I've tried different foods and diets and none of them affect visuals even the slightest. However, mood, energy, and food-sensitivities are greatly affected by digestive transit times. If food moves too quick (< 6 hours), it isn't properly digested and causes problem. If digestion is too slow (>12 hours), there is some sort of 'toxicity' involved. So I eat and take herbs to maintain a transit time of 8-12 hours. Since the current med schedule makes it all sluggish, it is a matter of taking stuff like cascara segrata to speed things up. At least in my case, this has been very important and beneficial to lifestyle - even though it doesn't address visuals. Just food for though, lol

The Amantadine is for visuals. Not sure about snow (don't have that symptom) but DR seems to be helped with Keppra - a little for me but some report good experience. What are your visuals like besides VS?

Guinea pigs are strict vegetarians ... They are tough too ...

Wondering if anyone has experience using these amino acids? Any HPPD symptom changes?

That's what we all want to hear for HPPDers ... feeling great!

It is a good med to try. Perhaps only the dopamine-type-people would respond. I use 1/2 tablet daily however getting best help from cabergaline ... but genetics and symptoms indicated this for me. What have you tried and how did you respond?

It is good to show relationship between HPPD and VS and migraine and epilepsy. Again that has (at least sort of) been seen. The negative side is that there is no treatment for VS and poor treatment for epilepsy ... so it doesn't do much for us in the short-medium term. Hopefully Beckley Foundation would be interested in finding out who the vulnerable population are since they hope to legalize recreational drugs. It will be interesting to see how this all flows/develops. Genes determine strengths and weaknesses. Have no idea how they would analyze gene data. A mathematician/computer programmer would be the most likely needed. There is software out there but it doesn't seem to be oriented to pattern recognition. Not sure what MD personnel would be needed. And of course, almost no one works free anymore - life has gotten too expensive for volunteers who are not already well off. Wonder why Dr A has not been able to get genetic-test-funding those 3 times?

Wow, 20 kg gain in 2 months! Hopefully with all that exercise it is muscle not fat ... I'd be total lard if gaining 20 kg!