balance

Okay so at first I tried 50/12.5 which I took twice for one day, I was feeling sick and had no reaction to the medication and thought it must be due to the sickness, so I waited until I felt better, I took 100/25 this morning and another an hour ago, no effect positive or negative at all so far, which is rather dissapointing considering most other people have taken it and it has been a miracle feeling to them within 20 minutes or so. I will take the same dose 3x a day for the next 2 weeks to see if there is any benefit, otherwise I am going to taper off and try some keppra or something.

Jay1 - Thanks. I am on clonazepam, but I am going to taper off that now as I only have a small amount left and have not been using them as prescribed so I can't get anymore for a while, which is probably a good thing because I'd rather not be using benzos at all, even though they are somewhat effective, only somewhat but nothing else helps (minus alcohol, I don't want to become an alcoholic either though)

1998 - Thanks, I really hope I can respond to this drug soon too as I feel like I'm running out of options and begining to not be able to cope again!

Taken my first half pill, so that being 12.5/50. been about half an hour, feeling somewhat differen't but nothing too noticeable so far but I will keep this updated as I go.

Keep your money … lets see if the forum as a team can come up with some things that might help in working with a doctors.

I’ve looked up many topics including brain injuries. But some of the best information is found when specifying PD in a search. Google parkinson's visual dysfunction

http://brain.oxfordj...10/6/1675.short "These data suggest that not only is the visual system affected in PD, but that dopamine may have an essential role in receptive field organization in human vision"

http://www.neurology...5/12/1907.short "Impairments in visual attention and spatial perception predicted worse cognitive function. Worse performances on tests of visual speed of processing and attention, spatial and motion perception, visual construction, and executive functions … Patients with mild to moderate Parkinson disease showed impaired visual perception and cognition compared with elderly control subjects. Visual dysfunction contributes to parkinsonian disability through its influences on cognition and locomotion"

http://jnnp.bmj.com/.../4/419.abstract "…impairment of visual cognition …"

http://www.sciencedi...01346949290051I "the effects observed after therapy confirm that abnormal contrast response functions in PD patients are linked to dopaminergic deficiency."

http://onlinelibrary...090510/abstract "We conclude that the dopaminergic deficit of retinal amacrine cells in Parkinson patients can be monitored by combined low-contrast and motion (displacement) stimuli"

http://www.sciencedi...353802003000221 "Visuo-cognitive impairment is prevalent in PD"

http://www.sciencedi...474442209700687 "The role of dopaminergic drugs in treating the various non-motor problems of PD, although clinically recognised, has received little attention. In this Review, we investigate the dopaminergic basis of the range of non-motor symptoms that occur in PD such as depression, apathy, sleep disorders (including rapid-eye movement sleep behaviour disorder), and erectile dysfunction. We discuss the evidence that these symptoms are treatable, at least in part, with various dopaminergic strategies …"

One problem is that you need to purchase most articles - $$$ that few of us have. But at least the abstracts show a connection between dopamine and visual problems (and others) that many HPPD suffers have.

It might help at this point if you quickly list your main HPPD/health symptoms.

From this we might be able to hone-in on some approaches to use with your doctors. As an example, you mention pain and spasms in other places ... unless these are from a known injury, they may be dopamine related. [For me, visual symptoms of PD worked as a start. Once results were in, it quickly grew into acceptance with medical professionals, though now it is spoken in terms of encephalopathy affecting dopamine systems.]

This is very good, thank you very much for posting these links. This is some groundbreaking stuff!

Thanks guys for the help!! I"m not thinking to clearly right now but all the links I read were related to Parkinson disease. I need to bring the hppd criteria and something saying that Sinemet is under trials helping some ppl with hppd. Since I don't know this doc. yet, it would be so much easier showing him then trying to explain something I don't even understand. Maybe I'll just go on microsoft word and make my own Sinemet/hppd trial page and I'll sign experimental studies conducted by MD. 1998 lol.

Be careful, I think you should just go in and seem as if you are pretty cluey about what's going on, you could get in trouble faking studies like that. There has been plenty of information about this drug, just be comprehensive about it, it really just depends on finding a good neurologist, which does suck, but such is life.

Boogres, I think you should let your roomates know your concerns, there is no point in being in an enviroment that is going to make things worse for your self, even if they smoke it in another room seems like a viable option, don't let these things happen!

On the old board I think someone had success with this drug. A poster on the thosewithvisualsnow forums has also seen a benefit on the dp/dr with this drug. It's on my list of things to try but not very high up there. But if your dp/dr are severe and most crippling symptoms it may be worth trying.

It does come down to personal etiology though, something may help some and do nothing for someone else or even make worse. But by the sounds of it Sinemet is hitting SOME of the right spots that need to be looked at. Finding a drug that has helped a few people already is very good, not just the fact that it is helping people but finding a drug that can help can show researchers where we need to be looking in regards to the neurology, other drugs that might even be more appropriate may be found.

Very good! glad too hear! Can't wait to try this drug!

Very exciting! Going to talk to my doctor about this very soon!

So this drug seems to be the hot topic at the moment, does anyone actually have any theories or literature or anything in general to explain why it works so well? (well so far from the recent reports)

I am going to get my self prescribed this, not going to get my hopes up but this sounds pretty good so far, 3 good reports is usually a good thing.

I'm also liking the fact it can be something you can be on for life, not that I would want to but I need something to get my life back together, failed relationships, no job and drug abuse are really starting to take toll. Updates from all involved with this drug would be very appreciated.

My anxiety is my worse symptom, has it any effect on that?

Anti-convulsant drugs have had the most success with HPPD, but not all, this could be good news or just nothing. But it also says anxiolytic, which I'm sure would be very helpful too many on here. I think for the long term this drug would not be good though, maybe simalir to benzos, whether it is addictive or not doesn't seem to be shown, It seems to be a fairly new drug but could be a possible treatment for us, the only way to know is for someone to take it and report back.

Very interesting drug, definatly on my list of things to try.

Reading a recent topic on the thosewithvisualsnow forums...

http://thosewithvisualsnow.yuku.com/topic/6943/master/1/?page=1

It appears someone has found relief with 3 supplements/drugs(not sure whether they are classed as pharms or supps or semi synthetics) two racetams Piracetam and Aniracetam with also glutamine.

I looked into both racetams a bit vaugley but it seems there could be some weight towards the Aniracetam helping. It has action on the 5-HT2a receptors, which I from basic research think the visuals and most other symptoms stem from, it also has anxiolytic effect, which I think most people with this condition can benefit from.

I also think the benifit for seizure with Piracetam may be a benefit to us too.

Keppra also being a racetam has benefited some HPPDer's.

So what do you guys think about racetams? Any personal expiriences? I have seen people talk about them on the old board. I would like to try them either way for the anxiolytic properties (anxiety being my main and most dissabling symptom) but I also think there could be some benefit for the visuals here.

Also just to note, it's interesting glutamine helps synergize these supps/drugs, to the people here if you have tried these, also ad whether you supplemented with this also.

Any updates?

Lyrica had no impact on me, maybe making my dp/dr worse the next day, but that might have been clonazepam wd's, lack of sleep, anxiety etc, so no real side effects but I did not take it much or for long, no benefit for my self. And very expensive!

Thanks for the update, the no anxiety and less dp/dr sound very good to me. Are the side effects simalir to benzos, for example the sedation, making you loopy and wrecking your memory? If this drug seems good I would like to try it rather than keppra once I get off the clonzepam as the anxiolytic benefits are very appealing.

Looks interesting, definatly let us know how it goes. Also interested in the anxiolytic benefits.

Good post, I am expiriencing Clonazepam withdrawals as I do not wish to be on the medication any longer, I have been taking it for 6 months, but only for 1 month daily, I didn't even realise I was taking it that much (and while I have been getting off it, questioning my self whether I even took it the night before, this drug kills your memory!) so I have decided to stop using this medication, the widrawals are not fun, I am getting off this by taking some every few days rather than slowly coming off it, I wouldn't say I'm completely addicted to this but the fact I am self medicating with opiates and alcohol to help me through the wd's shows that even a month of daily use at 1-2mg a day can cause problems.

Going from having good sleep to going back to my insomnia and anxiety is horrible but this drug is for SHORT term. I jumped on this drug (not the first though) because of all the literature touting it as the magic bullet to some extent, short term this can be true, but the dose that makes it a magic bullet will put you to sleep, smaller doses seems pointless to my anxiety and insomnia and don't even have an effect on my HPPD. So I am going to get off this drug, stay off everything for a while and only use it in emergencies. This drug is beneficial, but the addiction/withdrawal is not worth it.

If you have a decent doctor... see if you can get on Keppra, it is low risk and has worked for a good number of people.

Low risk? So it would be safer than taking clonazepam?

I am now taking Lyrica, no benefit at all has come from it so far, I don't seem to react well to drugs, they seem to have minimal effects (except for downers, alcohol, benzos and opiates) I have been taking clonazepam, trying to get off it now, think I am having withdrawals, did not think I would get addicted but that was me underestimating the drug. I wouldn't even reccomend taking it 1-2 times per week, maybe having it there for emergencies only, 1-2 weeks turned into daily for me, even though I said to my self I wouldn't let that happen.

Keppra would be my next choice, but according to the psychological side affects I'm not too sure though, although it does say it is well tolerated and some side affects can be countered with Vitamin B6. If it is safer than taking clonazepam I would rather go down that path.

I am worried about all these medications, they all seem to have seizure as a side effect.

Is keppra something that can be taken now and again like a benzo? Or is it something you need to be taking for 2 weeks or something before seeing benefit? I don't want to be on anything daily.

Bump

Yet there have been cases here and there of medications (albeit very few cases) curing people to nearly about 99%

I think it comes down to the etiology of each person, some treatments help for some, and for some it exacerbates their symptoms.

Also, doesn't the fact some drugs can cause neuroplasticity nullify this theory?

I'm sure if they can teach stroke victims that were told they would never be able to walk again through therapy and the use of drugs I'm sure the same can be done for us, obviously a therpay/rehab of sorts need to be found or even a drug it self. There are many things that could come along that benefit us that we haven't even thought of. But at the moment drugs are the only intervention that has shown success, be it temporary, better than nothing.

Thanks for the replies. Unless I can find GHB and not 1,4b which is going around and GBL also hard to find I think I will steer clear also, the anti-anxiety benefits are what have me interested as they seem they could be long lasting, if the drug is used in a safe manner that is. But based on responses it is what I expected, I didn't think it would really have a negative affect, something more closer to a benzo affect I would imagine, thats why I thoiught of the benefit. I'll bump this thread if I can expiriement.

Are doctors likely to give this a go if asked? I only use clonazepam occasionally but if I could mix it up that would probably be a good idea so I don't get the urge to take it so much.

I was fairly young when I started taking drugs (although I don't know if drugs are the actual cause of my symptoms) I was about 16-17 when I started doing shrooms, cannabis, pills (I did many, not knowing what the hell was in them though, stupid move on my part) and speed. I told my mum and she was dissapointed, not angry but dissapointed, which I'm sure most of you know that this is worse than them getting angry, it was a horrible feeling, my dad doesn't know of my drug use but I told my mum because I can't lie to here at all, so it wasn't a good feeling.

The best way to do it is just do it, get it out of the way, it was awkward for a while after but thats expected better to get it over and done with than stress about it.