chrismo

Okay, round two. Firstly those quotes are supposed to prove I attacked you?! Really, you do a disservice to yourself. In the first I only said it would be too stupid to contemplate if it were something that you believed, which is something I thought you said you did not, although apparently you do. I don't know how this is my "personal opinion making a decision for everyone else in the world that may believe or utilize some form of alternative medicine" rather than stating a fairly uncontroversial fact. And how on earth could someone's personal opinion make a decision for everyone else in the world? That goes beyond nonsensical And the second quote?! You'll have to point out where the attack is in that because can't even see where it could be minunderstood. To reiterate you did not simply introduce yourself and describe what you have tried but made what I cheekily, but rather accurately described as a "guru-like offer" to those "who are still afraid of going through the medical pathways.. who are getting tired with cramming pill after pill down your throat to help you find some equilibrium which may or may not ever show... I can't promise you I can change your world, nor would I every try to make such a claim.. but theres things I have tried to ensure my survival these past 14 years now, that I am more than willing to share with those interested". This goes beyond an introduction into something that needs elaboration and, dare I say it, justification. No, it is not my job to push you to prove your claims but I believe it is the responsible thing to do when you are making such offers which, as I said, could give people false hope, or implying (which you were) that "chemicals" are generally bad. If this make me a troll, then I'm a troll. But my motives are genuine and I am certainly not trying to "show the new guy whose (sic) boss". I can't even be bothered with your last paragraph. It would require me to repeat myself too much. But I don't see how responding to your falsehoods and absurdities proves I have an agenda. I will simply end by saying it was a pleasure to debate with some of such high intellect.

For the record I have also recently tried Keppra and my experience has been pretty much identical. I will most likely begin tapering soon. Ghormeh, I assume you have not noticed any difference being off the medication?

I'd prefer to be polite, but if you insist we cease then let us cease. In order: I don't believe I have been attacking you since the first post. Indeed, I would say I was perfectly polite in the first post but raised some legitimate questions. It's hard to understand your point of view because you babble like a maniac but I have tried to understand what you've said as best I can. I'm not trying to prove that you have an agenda, I merely voiced a concern that you may have one, and where I have minconstrued what you have said I am happy to be corrected. At no point have I tried to "attack" you. I ask for proof or evidence because you were not just introducing yourself but suggesting you had special insight that could help others. Such a claim needs to be evaluated or it could give people false hope. I will repeat, though, I'm sure there are many people that could benefit from meditation of some kind. I don't know how anyone could be the police of a disorder so that little attemp to be clever falls rather flat (IQ in the 160s, huh?). I am not trying to police the dialogue on this site, which is what I assume you mean, but simply raise what I believe to be pertinent questions or objections to claims that are made. I have not tried to "accuse" you of anything, and I don't believe that you believe that your opinions are the only way. Yes, you also did not say that medication should not be tried by anyone, but you did somewhat imply it. Yes, I did have questions about your beliefs and the things you've tried which I asked. Again, I did so because you were claiming to be able to help others and such claims should be assessed, not because you need to prove anything to me (the "burden of proof" statement I made was in response to a dumb misrepresentation). Oh, and leave out the sarcastic "buddy" crap. Also, if I believed, as you do, that claims made on this site shouldn't be debated I might be tempted to play the childish games that you did and threaten to leave. Yes, I am entitled to my opinion, thank you for pointing out the banal and obvious. But no, my opinions should not be automatically respected nor will I automatically respect the opinions of others (although obviously I respect that they have the right to hold and express them, but this is very different and something you seem to confuse). I am not trying to judge you as a person but simply put your claims to critical scrutiny (being new doesn't give you a pass on this), so stop the hurt puppy nonsense. And though I would cherish a continued dialogue with you (sarcasm), perhaps it would be best if we ignore each other from now on. I have said all I that I feel needs to be said in any case. But don't call me "close minded" (sic) or accuse me of attacking you when I was simply trying to get you to justify your claims. It just won't wash, (buddy).

The burden of proof does not lie with me. It is not a "belief" of mine, I have seen no credible evidence put forward that demonstrates these things work.

Fortunately, it appears that the first sentance is not something he believes. If it were it would be too stupid to contemplate. And alternative medicines are called alternative because there isn't any evidence that they work. If there was then they would not be called "alternative medicine" but simply "medicine". I don't what you mean by seeing the whole picture but I have taken everything you have said into account. And if you are going to make claims about things that do and do not work etc. then they have to be judged and evaluated, and you can't get defensive when people try and do this.

"As far as the chemicals in the water thing goes though.. I'm not falling into any fallacy. Public water sources in the US and around the world are so filled with anti-depressants from human waste processing that it is impacting wildlife and causing damage to fresh water fish species, among other lower rungs of the food chain. The company I work for had environmental engineering / hazardous waste / air quality / yadda yadda work all over the place. I get to see all of the fun stuff we deal with every week and the results of some of the enviro sampling and analysis performed. It's getting worse all around the US and it's definitely linked to the anti-depressant boom over the past 2 decades. We've only just begun to understand the environmental impact from the chemicals we ingest on the other way out." You missed my point. And you didn't really address any of my other ones, either. "But when I was at my worst I had a discussion one night with a deeply religious yogi who practices khundalini. He somehow saw through my bullshit and knew exactly what was wrong with me, and told me outright if you don't set yourself on a path to fix this within 5 years you will be dead. Whether or not what he said was just him trying to get me to pay for his yoga classes or him just speaking a universal truth to me in a form I would listen to.. it did the trick." I don't know where to begin with this and I'm not going to bother. But advice based off what some new age charlatan told you is of zero interest to me.

Yes, I assumed the "not an all around fan of pharma" part, this is sort of what I was alluding to when I used the word "agenda". I can't say I agree that many health problems are made worse rather than better by medication (I won't use the loaded word "chemicals"); mordern scientific medicine stands or falls on its efficay. Certain drugs for mental health issues are perhaps prescribed too readily but this is an exception and, I would say, done with the best of intentions rather doctors trying to "feed" us them. Also, by equating such medication with chemicals that may end up in a water supply you seem to have fallen into the fallacy that all chemicals are bad. If you browse this site you will find many people that have fully recovered or made significant improvements by taking medications that are now being used to treat this condition. It is true that many (myself included) have not responded to such medication. But understanding of the conition seems to have increased significantly in recent years and any medication options that arise from research into HPPD and clinical trials seems to represent a far better hope than fourteen years of meditation. Also, if your body hasn't healed itself by now it seem unlikely that it will do so on its own, no? Maybe meditation can help people cope with the symptoms but some of us are aiming for a bit more than that. Also, I found that after several years I was able to ignore many of my own visual symptoms. I don't think this is uncommon and is simply a case of the brain adapting. No meditation was needed for this to occur. But again, I don't deny that meditation could be helpful to some. (Having read this back it bugs me that the words "meditation" and "medication" are so similar. Sigh.)

So, meditation, then? Okay. I don't doubt that this could be helpful to some. But just to clarify, fourteen years of practicing this has enabled you to ignore, or 'tune out', the visuals you experience? Also, the only medications you have tried are anti-depressants and benzodiazepines?

Interesting story, thanks for sharing. As a long-term sufferer with severe visuals, insomnia,and frequent trouble with suicidal thoughts I can empathise with a lot of it. I'm glad to hear that you have taken control of it and found a way to live a productive life. However, I do have a couple of questions. You seem very down on the medication route and say that "there is no medication that will undue the damage I've done to myself". Maybe, but how do you know? What medications have you tried and for how long? The lack of candidness in this area (especially after you had been so thorough in all others) makes me worry about some kind of agenda. Especially when combined with the guru-like offer to those "who are still afraid of going through the medical pathways.. who are getting tired with cramming pill after pill down your throat to help you find some equilibrium which may or may not ever show... I can't promise you I can change your world, nor would I every try to make such a claim.. but theres things I have tried to ensure my survival these past 14 years now, that I am more than willing to share with those interested". I am sure everyone would be interested, so why the reticence? What exactly are these "things"? Perhaps I'm being unfair and you have some genuine insight to share and a contribution to make to this area of the discussion. But if that is so why not just share the information? Why the fan dance? If the methods(?) are legitimate, why be so taciturn about them? This was almost like reading a book only to find out that the last chapter had been held back. In any case I look forward to hearing more about your story, and once again I am glad to hear you are doing well.

Mmm. I would agree it's not the best combination but, again, I can't say the effects you describe are that noticeable in my own case. And, compared to other medications such as clonazepam the combination with alcohol seems rather mild. As for alcohol temporarily disrupting the effects of keppra, from what I understand (if you're only drinking occasionally), this is only really a problem if you're taking it for epilepsy (increased risk of seizures etc.).

Which papers convinced you that SSRIs are the only medication to treat the disorder with? Do you believe it is simply serotonergically mediated? If you do not use other medications (eg keppra), why not? And, to re-ask Ghormeh's question, what is your success rate? Do you need to help people learn to cope with the condition because their visual symptoms have not improved sufficiently on SSRIs? Or not at all? Have any of your patients responded negatively to SSRIs? Do you help patients deal with the condition in any ways other than the prescription of SSRIs and referring them on to someone else? And, since it is just your personal recommendation, how does accupuncture help people deal with HPPD?

People do seem to have different ideas, but this gentleman seems to have none of his own and is merely going off the information of one doctor. This seems at best naive and at worst downright dangerous. And yes, important questions indeed. I wonder if they will be answered...?

Again, good post editing; it makes my responses seem rather silly. Halpern also seems to advocate benzodiazepines, something you seem very much set against. Is he just wrong about that or could he be wrong about other things too? And would it not be responsible, rather that relying on the 'information' of one man, to read some of the studies that detail the ways SSRIs can make HPPD symptoms worse before prescribing them as your default medication?

No, I do not agree to disagree. Is he a physician or a researcher? Or both? And if he is, as you say, an expert on HPPD and has conducted research rather than just treated the condition ad hoc, could you provide his name and details of his work? As it is this all sounds rather sketchy.

Way to edit your post. Perhaps you could provide details of the person in question and their research. I'm sure it would be of great interest and help support your claims.

If you were truly experienced in this condition then you would know the harm that SSRIs (particularly something like Remeron) can do. Also, if the latter two are only helpful for anxiety, maybe change your name to anxietymd?

Potentially harmful medications, referrals for something that can only help in coping with the condition but not actually treat it, and referrals for a treatment that does not have a scrap of evidence for its efficacy regarding HPPD. Boo.

True, no doubt. But you could say that about pretty much any medication, and I received no specific warning from my doctor.

I think I'm pretty much in the same boat as you. It certainly hasn't improved my symptoms and when combined with alcohol makes me extremely depressed. That certainly doesn't sound pleasant. I know the strange eclectrical pulses in the brain (or 'brain zaps') very well. I have experienced them plenty of times when coming off SSRIs too quickly. Was the keppra helping you at all prior to tapering? Or did the spike in symptoms occur without having experienced any improvement beforehand?

Hellish in what way, Jay? And how long did it take you to taper off?

A quick question, the reason for which should be obvious: Has Keppra made any of your visual symptoms worse? And if so, which symptoms, to what extent, and did they return to baseline after discontinuing the medication?

Very interesting story and I can relate to a lot of it. But, and I hate to say it, the advice zigzags between the obvious, banal and downright useless. "Don't do drugs" is something I think we can all agree on. Alcohol and caffeine are probably best avoided but are unlikely to perpetuate the disorder on their own, especially if only consumed in moderation. I doubt cigarettes have much, if any, effect. Excercise, eating healthily and keeping your mind occupied are all likely to be beneficial, of course. As for the "most of all" part, well, this is hardly the place for a metaphysical debate, and if it helps people in some way I suppose that is all well and good. But personally, I would rather come to a scientific understanding of the causes of the disorder, what exactly is going on in the brain, and how it can be fixed. And I am very pleased to have found a site where intelligent people are seeking to do just that. I doubt this course of action is the "only way" to beat the condition but congratulations for doing so all the same (I assume given the date of the post and the lack of follow ups this was achieved again?).

I'll take a stab at this since I'm going through a similar situation. 1. Why would you need to up the dose for the three day concert? Are you planning on drinking? Or drugging? I have found the need to up my dose occasionally since I've started tapering (bad days/withdrawall symptoms). It might set you back a bit but it's not going to 'destroy' the tapering process, especially if it's not a significant dose increase and only for a few days. 2. Keppra seems to have helped more people and is better tolerated. The benefits that those that have been helped by it accrue are lasting whereas Sinemet, if I understand correctly, is more like clonazepam in that if it helps you it will only do so as long as you continue to take it, and taking it long term doesn't seems sustainable. Having said that, in my case I would have been delighted if Keppra started working after a week or two. As it is, it hasn't worked at all and I may look to try Sinemet.

I took hydroxyzine when going through an insomniac phase and after an unpleasant experience with Zopiclone. There are several people on here, if I remember correctly, that said it helped with VS. I did nothing for me, however, and I quickly discontinued after reading several anecdotal cases of it making visual symptoms worse. Annoyingly, I think Keppra is now starting to make my visual symptoms worse. Curious, how certain drugs can alleviate symptoms for some but excacerbate them for others.

I can't remember exactly, it was a while ago. I think I'd been on it for around six months(?) and I had gradually worked up to the highest dose (45mg). As I say, I can't be sure that the medication caused my symptoms to worsen but as soon as they did I discontinued it. I'm exactly the same re hypervigilance when starting a new medication. I think that's perfectly natural with a disorder like this.