LarryC

so In my opinion, unless you are suffering severe pain, stay clear.

Agree.

Some people though do have bad reactions to those meds, although most really like them and get addicted easily because of the feeling. My case as with some non hppdrs I talked to have the opposite effect.

FFS the tinitus is so loud now its spread to both ears its like someone screaming, this had better go away I can't cope with this.

I have the tinnitus pretty bad myself. And it seems to get worse at times also. Hope you get relief.

Alisa,

That sounds very tuff, prety severe. I have heard when I read the thosewithvisualsnow board, people getting the symptoms after anesthesia. Also some got PFO with the stress.

I had hppd leave and then come back after 18 years of virtually symptom free. Now have had it worse in ways than ever before for the last 8 years.

Clonodine has a sedative effect as I know but has not actually alleviated the visual/auditory symptoms of anyone I knew of. So some take it to help them sleep.

True? Two words man: FUCK THAT. Hahaha thanks for the timely reply, I love that the board seems to be gettin active again, sounds mean, but it's almost like many of the kooks got siphoned out...Do miss some of the old members, I never really posted here because there was so much info available, but i felt like i knew them in a weird way.

I hope so. They really bothered me at times. Do miss some of the old members too. Only thing is, if,as they, come back, may also be the beginning of the kooks coming back. Which means I will , as usual, try too explain simple logi to them.

ou are welcome about the info. Best to always ask about a med you are not familiar with. Ahh, the other med was Vicodin, that I could not remember.

I wish I could doing them, probably the number one thing I regret most about having HPPD. My friends are doing it today and I am one jealous, DPed, staticy, man right now. If I ever get through this you better believe I will do it again.

None. 1 off a long time ago.

Hopefully you'll go symptom free again sometime soon Larry. The fact that you didn't use any drugs and it came back is confusing as hell. Do you have any guess what could of caused that? Maybe a stressful job, or a change in life style. I'm sure you would of mentioned the connection. I just hope that doesn't happen to me as well, couldn't handle much more anxiety! Take care

Yes. It happend after I over excerted myself on a hike that I should not have done since I have fibromyalgia sine a young age. I mentioned that on the way down, after already being exhausted and body srained, that we took a rock narrow path that was more likely a water drain. Had to step from small rock to rock on a downward slope. Kept erking my neck and snapping back.

Afterwards, my hiking companioon drank and got a bit nasty which pissed me off. This went on into the parking lot. I was physically and mentally tense for days.

In my correspondence with Dr. Lerner, he said that it was well known in his practice tha pressure on the neck or eyes can retrigger hppd symptoms or bring about hppd symptoms fo those who have the tendency waiting for something to bring it up (from their past drug use I am assuming)

I was not given a solution though. T

The symptoms started mild and then more severe and more symptoms. Some that I never had before. Like I never had static, vibtation, phophene in the dark, long periods of tinitus. I developed the vibration and phosphene static about 1 1/2 years into the initial afterimages. I then had constand tinutus 3 years after thinitial onset of symptoms.

This all started im May of 2003 and I have had no improvement since.

Damn, just found out that Oxy is an opioid....see? I really do know fuck all about pills. I know Kratom can really aggravate HPPD, ive read permanently, so I guess Oxycodone is also a nono...right? hahaha, I'm not willing to be the guinea pig.

As Gill sais, many meds can make things worse for a while. Some like Oxy and a few others. They just make me super anxious. I have met some people who have the same effect. The other med, a little less in strength (can't hink of the name right now) had similair bad affects on people with no hppd. My previous supervisor told me that that was the first time in his life that he hallucenated (on that pain med).

I have had HPPD for 33 years. have much experience with different treatments and would be happy to share my knowledge with anyone. Just want to help. There have been some things really beneficial and some not so. One thing I can tell you is that it is No reason not to lead a full productive life. If you put yourself in the position of a blind man and say this is the life I know and must live then you will . Life is truly what we make it. Acceptance was the biggest challenge for me but once I made that step the rest was easy. I invite any and all to ask anything they like as I said after 33 years I think I'm qualified?? Good luck and please ask away! Larry

I have had it about as long. Thing is I had 18 years of being hppd symptom free. Then came back with a vengence as symptoms increase and added over time. Not drug related recurrance. Now life is difficult again on that level.

Yes if you ever go on curezone there are some horrendous acounts but it is rare for an infection to get this bad most people complain about bloating I ended up hallucinating in hospital barely able to walk with one working hand, it could be worse I've read about someone trying to sue the NHS because they forced someone into mental care who had a Candida infection and that person died the family requested an autopsy and analysis of the spine showed insane candida she was being eaten alive.

Im guessing most people would of seeked help way before I did, I thought it was all HPPD related.

Thanks for that.

In a way, for you it is and is not hppd related. Hallucenegic drug made it worse. Not the cause as I conclude from your history but certainly an aggrevating factor. Hopefully when you eliminate Candida, you will be symptom free or greatly reduced. I am keeping my fingers crossed for my friend.

By the way, what is the definitive test for Candida.. I am going to my doc soon and will ask her to send me for testing.

I have all sorts of crap you would not believe. Babesia, Bartinella, possibly lyme and some other weird crap.

I am now having fruit and herb smoothies in a high powered blender (blendtech) and am mostly eating Quiona and cooked veggies. Dont' even know if this is a good approach.

Klonopin or any benzo after a period of constan use will give you disturbing thoughts, dreams,and bad sleep. So if you are not on them, try to not take them for hppd, unless it is really bad. And test out if they do you good as far as visuals and other debilitating symptoms. If not. Stop asap or addiction/withdrawel can be hell.

A word of advice I screwed the enamel on my teeth by going to hard at this at the start, candida die off makes things very acidic my piss was fizzing like soda If you have acidity problems I suggest you scale back... also alkaline vegetables like cucumber are your friend

Geez Penny, I never heard od anyone ona an anti candid regimine go through what you describe as bodily reacttions to die off. Have you yourself heard of others having any the same reactions?

I'd love to have that as I have tried (and currently) try many medical techniques...often to no avail and usually with some worsening of symptoms...but I will continue to make attempts-

Mandrake,

As you probably know, the trials that were posted on the previous site had people with effects on them all over a range from nothing, good, bad, side effects etc. etc. Though people asked people on the board if they had ever tried or heard of med. abc. This can be helpful, to ask others especially if the answers are predominately on the negative or the positive side to personally decide if you think it is worth putting yourself through a trial.

I am going to contact Jay just to what's up.

Good to hear back from everyone! So let us be dedicated to the truth behind HPPD (whatever that may actually be) yet still consider even the most outlandish theories with an open mind before revealing their fallacies and flaws.

The restaurant wasn't in the UK actually but I've heard there are some of them (not connected though) in several major European cities. I imagine there must be one in NYC at least.

Dukkha

I believe most are. But you have to admit, there were some theories on the old site that had no basis in anything. When questioned and people tried to logically discern the posters statements, the answers were sometimes less logical than the original theory but some stuck to their guns. If you remember, I was moderator for a while and saw things that were

absolutely absurd. But giving people the benefit of the doubt, communicated with those people which in many cases just made them angry for questioning them. I was doing that for the community of newcomers to show that we all have a responsibility to at least show some logic to our own personal theories.

When I first started experiencing HPPD I had no idea what was going on. I thought I was being secretly dosed and was constantly checking my pupils and eyes.

I am hesitant to say that the red eyes are directly caused by HPPD. More likely it is caused by poor sleep (possibly from HPPD/anxiety) or irritants in the air. Try out some eye drops if they are dry/irritated and don't stress about it -it'll only make it worse.

DUkkha

Concur, especially the sleep part. Being under stress from the mental toll from this and also a symptom of hppd can also be stress as opposed to the hppd visual symproms only causing the strees, does not allow for restful sleep that we normally have had. Bad sleeep causes havoc with many bodily operations.

Sorry mate I increased some herbs last night and my die off symptoms were the pits this morning I get all paranoid and irritable. I didn't mean what I said about you thinking what ever I had no way of knowing. The problem I have is if I have a different illness, why did I react so similarly to others on medication etc across the board. I had the same symptoms as others to a t. I even used the advice of others to get through day to day. I had light VS growing up but so did others on the old forum mine went away and came back with drug use it wasn't the same as the light static I saw growing up it was a hallucinogenic hell hole with after images, fractals, tinnitus, balance issues, light sensitivity, head pressure.. I think you could name a HPPD symptom and I would have experienced it I had it bad... I say had but have is probably more apt I'm having a really bad flare up today I think I need to slow things down a bit.

Oh

Hell yeahs Merkans the man!

Penny, I am not offended. I am very open an curious about you as I have followed and discussed things with you on the other board for a long time. I want to understand this malady from any angle that might have some merit.

I underlined that first part of your above because I don't really understand what you are saying. Please, when you feel a little better, explain further. I think, actually know, in a way from all information that I have read over the years, that the symptoms can come from more than one cause. Actually many causes for the same symptoms. I think that is what David is going towards and so is Dr. Abraham. Many people have the same symptoms with different personal histories and retracing different causes for the same symptoms. I think that is partly why this is being board is really called Lasting perceptive disorder ( I think) rather than hallucenegenic persistant perceptual disorder. I think the hppd tag is going to go away to include all others who have not taken any hallucengen and have this stuff. More information is showing that people are having all these symptoms and never took a hallucengenic drug in their life.

I underlined the other sentence because as you are right I assume, I did not hear much of it on that board.

I heard so much of that when I used to visit the thosewithvisualsnow forum before I ever came to hppdonline. So the conclusion is that there are several possible causes for the same brain dysfunction. Many in fact, from migraines, migraine without pain, antidepresants, especially paxil, stress, viruses, bacterial issue, injury, trauma to certain parts of the body,etc. etc.

And one more thing, I am open to any possible solution, since this time it has not gone away, like it did for 18 whole years in a row. I drank smoked cigarettes ate anything and was fine until that fateful day that i srained my neck and had extreme physical and mental stress.

Just an off note. I remember as a kid crying to my mother because in the dark I saw colored dots and things.

Paxil is known to give visual snow afterimages and other symptoms. There are several (many) people who attribute there visual issues from takin paxil. This was noted on the earlier site content.

There are many people on the thosewithvisualsnow forum who have these issues from Paxil alone.

Sorry i missed this.

No I really do agree with you, ive got my message out people can try it if they see a correlation with other symptoms you obviously do not and I suspect you have doubts that its the reason im getting better at all. but I get it from everyone. I don't expect people to say omg how did I not see this... its bizarre even still in my eyes.

And the whole clonazepam mask/cure thing is not worth arguing about, im sorry if I dodged out of that.

On the contrary Penny, I can see how your personal physical, mostly visual, can be attributed to something other than LSD. As I have said, you can relate your vision problems beginning before you ever took drugs. To me, trying to be logical, would look for a different cause than hallucenegenics. Sure they made them worse, but they didn't start with them. So I look for cause/effect. I would come to the same conclusion as you had it ben me. I wish you complete reversal of symptoms and think if that is the underlining cause (candida) then you should at least have some reversal.

I was ponting out, that the great maority of people on the board did not have any visual issues like the common hppd ones until one fateful day that they took their last hit or cocktail of soe drug(s). For that majority the logical cause is a different one than yours.

Klonopin isn't worth arguing about, nor is anything really. It work for some but to an extent and the price to pay is high. It did diddly for me, although the biochemical properties and actions say it should.

This is also why I am open to any alternative approach.

Its all good Larry I expected to get a worse reaction from people, on the old board I would have been accused of being a troll eaten alive and burned at the stake (I exaggerate).

As far as Keppra is concerned I got really ill while taking it, I believe it made my condition worse it could be coincidental though. There is a guy on the other HPPD forum that Duro started who had a bad time and hospitilization on Keppra I have no idea if he had candida or whatever but it was a definite bad time for him.

You have to make your own mind up about Keppra, ive said what I believe happened to me but look at the other side of the coin Merkan is having the time of his life somewhere (no doubt).

On the other board, it (your Candida approach)would have been scrutinized alot most likely, mostly from people who insisted on the known/unknown science. But you have the pre lsd visuals as your reasoning, so no one could have an answer for that. I support you on this and your logic and would have on the other board.

As to keppra, if you remember, I asked anyone doing a keppra trial to make their own thread so we all could follow individuals reactions. As you know they were all over the place. Few or less got good results from keppra and some of those did not get those good results unscaved. They had to go through a hard adjustment period. Many stopped because the side effect were just too hard to handle and they weren't getting much from the med anyway. Note though that the med sheet does list several negative side effects that can happen. It does not indicate that they would more likely happen to one group vs another.

All the best to Merkan who has regained his life back.

Of course you are right Larry, it just feels great to be getting better and I genuinely want to help others I know people will have to take there own paths I won't go on about this any more. I know ive only just started posting here but I think i may give it a break for a while I had a really good day today, i'm super happy and having someone like me around is just going to be super annoying. I just want to get my life in order and start enjoying it again I don't know what more I can say or do here. If anyone wants to contact me just PM and I will get back. All the best everyone.

Penny, you are patronizing me, but that is because you are getting better and feeling well.

I am always glad to hear people getting better. And to start having good days again must be fantastic for you.

As you say, people have to go their own path. That takes alot of thought on association of their symptoms with other issues and then maybe finding an approach to treating the other causes.

In your case, you said you had static or snow before you ever took lsd or whichever hallucinegenic drug. You had candida then, and had the visual symptoms. So logic would direct you to attribute it in some way to candida.

Since the great majority of people had no visuals until they took lsd or another hallucengenic drug, then the obvious cause was the drug and to attribute it to something else would not be logical for them.

For you it would be the logical cause/effect due to having the symptoms even before lsd and having candida at that time and nothing else you mentioned. So I would also think like that if it were me and would approach it that way.

For the great maority of hppd sufferers, they do not have that connection.

Dukkha,

Good to see you back. Thought you were going to be like some old members who had visited this site a couple of times and then stopped posting again.

I know you wrote on another thread. Just wanted to say we agree on the content on the previous board.

As a moderator I saw some of the most idiotic stetement and theories. I had to say something in rebuttal for any new people who may have read that crap. So many still in my head, because i had to deal with it on a daily basis.

How/when did you become administrator?

I would agree in some cases but with clonazepam I think mask is a more appropriate term... we may have to agree to disagree Posted Image.

What do you base givining it the tag "Mask"? I would agree when it does not eliminate the symptoms to a very great degree (such is my case - does not help) . If it bring down the sypmtoms to a great degree, it has biochemical properties consistent with treating the condition as per most of the literature on hppd. So would be treating or compensating for the biochemicl imbalance/dysfunction.

It would help if you could look up what medically the definition of Treatment, Cure, Mask mean.

If you do not find the definitions we will just considerately disagree.

In so far as Kratom that Merkan took I have read on a couple of reports stating that it has natural antibiotic/antibacterial properties and in Japan they use it for cleaning dishes. I can't find any serious studies but again it interesting.

I know that Merkan had drank that stuff on occassion. Then that last time, he was in the middle of posting after drinking some and said something was wrong, and stopped. Then hospitalized and not heard from for a while since he was rushed to the hospital.

Would be very difficult for a medically knowledgable practictioner to attribute it to anything other than its hallucenegenoc propertiea on top of Mekan's already hppd condition. All other explanations would be a greater stretch.

The most important thing is that he has ben treated sucessfully with keppra and klonopin. Treated not cured.

when I say mask I men the underlying problem is still there but yeah im just saying what you are in a slightly different way... But i don't believe you are cured if you have to take a drug everyday to feel normal, don't get me wrong its great but you still have HPPD.

Penny,

I never said cure, but treatment. A treatment is medically not a mask. In a treatment the symptoms or the actual problems are treated and you are well in way but not cured. But also a treatment is not a mask.

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.

I will attempt to post every week or so. I suppose I have begun to post less frequently because, not to sound too negative, but nothing really works....keep in mind I have had this for 18 years and this makes it harder to shake so you "new-comers" have quite a bit more hope of clearing things up completely. So I suppose I am completely focused on acceptance. This does not mean I will not continue to hunt for help but that sometimes continual studying of the topic does little more than frustrate me. I made a post in the SUPPORT/FELLOWSHIP section (I think the only one). I think in my case this forum provides solace by way of the group. Uncovering remedies is crucial and posters like Shaolin, Larry, David, Gill etc...have excellent scientific theories. I pay close attention to these but try to derive a greater sense of acceptance through related experiences. I intend to post more none-the-less, if only to create some momentum here.

Thanks for that post Mandrake. Agree, it is mostly about adapting if there is no great reduction of symptoms. But it may happen by a stroke of luck someday for anyone, no matter how long you haave had it.

Posting for the reasons you mention would be good. Thanks.

I am here because of a recurrance afte 18 years free of symptoms. Now for several years I have worse in some areas and more symptoms than I have ever had before. Now since 2003, almost 8 years. No let up in site and this is the longest I ever has bad hppd symptoms. Does not look good fo me either but I am open to new information always (asuming it has practical application, not just another neurological, biological theory that we can't make change in our life to get a benefit.

In relation to clonazepam and keppra I believe this is just masking the symptoms but you are right about different people having sensitivities to things... I was all good on clonazepam for a time. Does merkan still have to take both drugs?

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.

Larry I don't believe everyone here has Candida and I certainly couldn't prove it, there were a few people on the old board for instance Merkan and Me had almost identical reactions to everything I seem to remember him having very similar sensitivities to me our Keppra experience was eeeriliy similar compared to some other peoples accounts i seem to recall Momof2 had similar reactions to mundane herbs as well as others I started a thread about it on the old board many others weighed in. In my head I just think if we had the same reactions theres a good possibility we have the same illness and the solution is a pretty healthy one I'd just like some people to try and report back on there progress if any.

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.