alice-acid

people's benzo experiences

41 posts in this topic

when people have been prescribed benzos what have they been ? i know its usually klono but anything else? and what strength and how long for? because i was reading the post by sum1 that said theyd been on klono for over a year and i know full well that in the UK it'd take you month and months and MONTHS to be prescribed valium even, and theyd try everything else first lol and start u on 1 mg, then after your course insisting for months again move you up to 2mg if you insisted long and hard enough that it didnt work, i think thats a mixture of the fact that the health care is free here, whilst in the USA u pay for it dont you? and the fact that they know how bad the wothdrawal really is, and theyre unlikely to ever give you a course lasting more than a month

but yeah i wanna know what ppl have had, how long for and if it actually helped well enough for it to be worth it?

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It may just be the UK, because there's been a lot of negative press or rather caution probably stemming from Dr. Ashton's evaluation of benzos (as you postulated). It's not "easy" per say to get them in North America all the time, you do need a reason and now they're cracking down on it a bit more. It has nothing to do with it being free (I'll let you fill in the blank).

My experience:

4 years (2 years @ 2mg/day, 2 years at ~3.5mg/day...came down from 4 pretty quickly). This is clonazepam, I should say.

It saved my life. Reduced my HPPD to completely manageable. I've had no negative side effects that really affected my life negatively, but again I may not be aware of them. I'm now tapering off them and it's going decently well (4 days into a taper from 3.25 to 3 and no symptoms). I'm going to try and get to 2.5 by the end of the first week of Jan.

To answer your question, for ME (and it differs), my experience was very positive and maybe I'll require staying at a lower dose if my HPPD is still present at a level it can control.

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when people have been prescribed benzos what have they been ? i know its usually klono but anything else? and what strength and how long for? because i was reading the post by sum1 that said theyd been on klono for over a year and i know full well that in the UK it'd take you month and months and MONTHS to be prescribed valium even, and theyd try everything else first lol and start u on 1 mg, then after your course insisting for months again move you up to 2mg if you insisted long and hard enough that it didnt work, i think thats a mixture of the fact that the health care is free here, whilst in the USA u pay for it dont you? and the fact that they know how bad the wothdrawal really is, and theyre unlikely to ever give you a course lasting more than a month

but yeah i wanna know what ppl have had, how long for and if it actually helped well enough for it to be worth it?

I pretty much sympathise with your story. It took me over a year to be prescribed any sort of benzos and then it was only 2mg of Valium to be used as and when.Tbh 2mg did nothing. Once I got refereed to the mental health team and went through another round of different meds i was prescribed Valium at 10mg 3 times a day. This helped loads with anxiety but had no impact on visuals. After being reffered to the consultant psychiatrist i was switched to clonazepam which is no where near as effective (for me) as valium. Doses of less than 2mg do very little for me but dosage higer than this make me really drowsy. The most i have ever taken is 5mg which made me feel nice (almost symptom free) but very intoxicated.

I guess i have been on a dose of 2mg daily for about a year now with no real signs of tolerance, touch wood.

I think my problem was that i was totally honest with my GP about my previous drug history which probably made them wary of prescribing a potently addictive substance.

hth

Russ

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yeah but it would be difficult to be correctly diagnosed with and treated for hppd without mentioning drug use :P haha

but yeah i just wanna know if it works tbh some ppl say it does some dont

tbh ive taked valium and xanax that ive bought before and that has actually helped alot so i do think benzos would help me a little but im not sure how long for

rusty are you in the uk??

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yeah but it would be difficult to be correctly diagnosed with and treated for hppd without mentioning drug use :P haha

but yeah i just wanna know if it works tbh some ppl say it does some dont

tbh ive taked valium and xanax that ive bought before and that has actually helped alot so i do think benzos would help me a little but im not sure how long for

rusty are you in the uk??

I's a difficult one. From personal experiance i found that it was hard to get any meds apart from Anti depressants from my GP. I believe this to be because i was honest about my previous drug use and my GP was then unwilling to to prescribe me with a potentialy addictive drug. I think most GP are cautious of handing out benzo these days anyway but are far to happy to dish out anti depressants.

It wasn't till i had seen 2 Psychiatrist and a Consultant Psychiatrist and about 3 years that i was diagnosed with HPPD . Saying that the consultant i am under now is starting to loose patients with me and has pretty much said that if siment doesn't work then we can try Kepra but after that, that's it. I guess in one way he is right but just because there is no cure at present I don't see why i should give up trying to find one. I think i may ask to be referred to a psychiatrist that is involved in active research next time I go as these doctors seam to be more open to using diffrent approaches to difficult problems

All in all i guess it depends how sympathetic your GP is but i would ask to be referred to the Mental Health team ASAP. If benzos work for you then happy days, for me clonazepam was not the magic bullet it seamed to be for others, i had much more success with Valium but sadly was switched to clonazepam due to addiction risks.

Yeah I'm in the UK :D

Russ

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I've tried 4 different benzos. They are truly wonderful meds. Each with it's own characteristic. Valium in known to build up resistance the fastest of all - but it doesn't predict exactly what will happen to an individual. Negative publicity among celebrities hasn't helped - Marilyn Monroe died of Valium overdose (unless you believe the Kennedy conspiracy that she was murdered).

Sometimes people go nuts with meds and take too much. Often benzoes are used for depression or anxiety that ultimately need to be addressed by dealing with psychological issues. But it is so easy to delay painful and time-consuming work with a pill.

This makes it difficult for those who need the meds for 'neurological' reasons or to regain control in order to function and enter into therapy.

Antidepressants can be useful and are subject to less immediate abuse. However, long term they are abused since people just use them to blunt their emotions. These meds usually turn a person inward and often damage social interactions. Prozac is a famous marriage breaker - not just from reduced sex drive but also from reduced emotional connection (the main reasons people get married). With health insurance, it is cheaper with both time and money to skip therapy.

There are also money issues behind doctors switching to newer (brand name) meds. It isn't simply payoffs. It advertising, free samples, hype, patient request, and 'keeping up with the Joneses'. There is no doubt that new meds have benefits. But old meds are also beneficial. Here are some rough figures of meds commonly prescribed

Brand name:

Zoloft: $200 - 350 per month

Celexa: $180 - 360 per month

Lexapro: $180 - 360 per month

Abilify: $300 - 2,200 per month

Effexor: $120-150 per month

Seroquel: $180-580 per month

Lunesta: $200-650 per month

Generic:

Klonopin: $4 - 11 per month

Xanax: $4 - 11 per month

Valium: $4 - 12 per month

Temazepam: $4 - 16 per month

Now ALL of these will have withdrawal issues if you have been on them for a while. For the newer meds the flowery phrase used is "discontinuance problems" - but it is exactly the same thing with both.

If you were a manufacture, which med would you like to produce? Early on AIDS treatment in the USA cost about $100,000 per person. Illegal generics (patent breaking) occures in countries such as Africa where it cost 75 cents a day to treat a person with AIDS - rather a large price difference.

No medicine is 100% safe, but most have beneficial uses. And there are many influences that doctors are under.

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The way I eventually got prescribed clonazepam (as many doctors had refused to prescribe it) was to get an appointment at the top facility that deals with mental health. This was in 2007 when there was basically no exposure to HPPD. There still isn't very much, but online there are far more pages and accounts. The thing that helped was bringing in a boatload of peer-reviewed scientific literature on the subject, mainly stuff from Dr. Abraham who showed that clon was the way to go in treating the disorder. There are other papers that show that seroquel will in fact aggravate HPPD and I showed this to one of the first doctors who tried to prescribe it, but he was just useless and someone who had to see 20 patients a day and give a quick fix. That's how imprudent and terrible doctors can be (and I'm going to say MOST pdocs based on a lot of information). If you go to a special clinic that takes the time to listen to you and if you make a compelling case, I think you have a good chance.

The most important factor is: They don't understand HPPD. Nobody really does. They just file it under drug-induced disorder and the meds for that are rarely clonazepam. The other issue is that of dependence and they don't want someone who has admitted to taking drugs to be entering the muddy waters of prescription drug abuse. I think almost everyone who has HPPD is actually more careful, aware and scared of abusing drugs so it's in fact a huge disconnect that these doctors have with normal people who had a bad trip (if that's what we want to call HPPD) and are suffering from an idiopathic disorder.

A lot of David's (Kozin) links back around that time really helped me get the information I needed to show the doctors at the mental health clinic. I was suffering to no end, but I was still able to articulate the issue clearly and to show that it's not just the internet (although I printed many pages of pertinent threads from the previous form of this board for anecdotal support).

Search Dr. Henry Abraham. He does work on HPPD and ever since I got my life back on clon, I haven't really checked up on that, but I hear it's getting more attention (again thanks to David and others).

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My experience:

4 years (2 years @ 2mg/day, 2 years at ~3.5mg/day...came down from 4 pretty quickly). This is clonazepam, I should say.

It saved my life. Reduced my HPPD to completely manageable. I've had no negative side effects that really affected my life negatively, but again I may not be aware of them. I'm now tapering off them and it's going decently well (4 days into a taper from 3.25 to 3 and no symptoms). I'm going to try and get to 2.5 by the end of the first week of Jan.

Would you please describe how "It saved my life"? In what way was your HPPD unmanageable before Klonopin? Was is just anxiety? Or the anxiety from the newness of these aweful symptoms? Your answer would be helpful for me.

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Would you please describe how "It saved my life"? In what way was your HPPD unmanageable before Klonopin? Was is just anxiety? Or the anxiety from the newness of these aweful symptoms? Your answer would be helpful for me.

I never had anxiety from HPPD. Not in the conventional sense. No panic attacks. Just the consequential mental torture of knowing my life was ruined. It wasn't anxiety though. The interesting thing is that my symptoms were IMO physical manifestations of an anxiety-related syndrome. My head pressure was through the roof (I can try to clarify head pressure, but I'm assuming you've already heard about it). I was dizzy, nothing seemed to be in the right place and I suppose (although I didn't really call it this) it was some form of dissociation, as if their was a veil thrown over my perception of the world. Crazy visual snow. All sorts of visuals, but perhaps not AS bad as some people. It was mostly the inability to see straight lines (I still can't). The thing that clonazepam did was to firstly remove all the muscular tension and head pressure. This was a breath of air after being suffocated for a year. I could think, be happy, do things, enjoy life after a year of pure torture. Once that was gone, everything seemed quite minor. My visuals also decreased in severity. They were the same, but less intense and/or I didn't notice them much. I think HPPD has a lot to do with your state of mind and being in a better one helped to ignore some of the factors that seem more prescient when your entire world of perception is altered. Again, this is probably anxiety related: when everything is messed up, every little thing is associated with that state.

The newness of the awful symptoms is what I would describe the anxiety as (astutely put in your post). That being said, my HPPD was unbearable, just 24/7 pain, pain, pain. I've come to understand a lot about the different forms it can take and for us HPPD-afflicted people, I think we know that pain from "within" the brain is the worst, but again, never any actual anxiety. I should also add that (touchwood) during my current taper (it's been 3 weeks, cutting 10% every week) I've experienced my HPPD symptoms (muscle tension, head pressure, dizziness) and no anxiety or insomnia (which is what people take clon for in the first place). Thus, I think it's quite true that one experiences WD as the affliction for which one originally took the benzo. My visuals have also increased in severity but I've become used to them and the knowledge that WD are just that helps me to know that I can ignore my visuals sicne I'll return to baseline. The other factors are very hard to ignore. Yesterday was day 5 in my current taper and it was bad. I was really feeling hopeless, as if I wasn't going to reach baseline for awhile. I've only been awake for 5 hours today and so far it seems like nothing huge...yet, so I'm more optimistic, but hopefully it stays that way (it'll probably get bad around night time).

Visual, I know you are looking into it due to, well, visuals and I'm guessing you're wondering whether clon saved my life because it rid me of visuals. If that's the case I'll say that effectively it DID remove me of visuals AND the underlying feelings that were associated with reacting badly to the visuals.

PS. Anybody doing anything interesting tonight? I'm assuming at least on the benzo withdrawal side nobody is drinking and on the overall HPPD front, nobody is "partying". I'll just be nursing my WD.

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ha! well, as long as you're not regretting it today, all's well. Right now I'm finishing 7 days into a taper from 3 to 2.75 (my original dose at the start of the year was 4mg/day which I've been on for ~2 years, before that it was 2mg/day for 2 years...HPPD "disappeared"). I was going to cut another 0.25 tomorrow night, but after some sage advice I've decided to wait another 3-4 days, maybe a week before taking another plunge. Haven't had a drink besides water in over 3 weeks and hung out with friends last night who were partaking in alcohol (obviously) amongst other things. Got through it. That's not to mention the other friends who reaaally went partying at clubs. Oh HPPD, why'd you have to chose me? Not that I'm advocating drinking on benzos, but I have also read other stories of people who like me were not affected by alcohol differently while on a pretty high dose. Withdrawing is a different story. Not going near it.

I should say though that yesterday and the day before were really bad WD-wise and today I'm feeling good, which is an encouraging sign, I think universally in terms of WD symptoms being temporary.

Just wondering...does your HPPD get any worse permanently (or just return to baseline) after..oh say, a night like last night (I'm making a very big assumption)?

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I was on a decent amount of klonopin for a few years and overall I don't think it was really worth it. Maybe for a couple months it could help get things back together, but I found it very difficult to get off of (I'm still on a tiny amount which is still hard to get off) and it just causes more problems in the long run. Best thing to do if someone does decide to try a benzo would be to have a definite amount of time you plan to be on it and stick with it, see how things are after that time. Since, it can be easy to get caught up in never getting off because of the withdrawals.

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I can't live w/o klonopin. To me it's worth the memory loss and addiction as long as it's still somewhat effective. I've been on an average of 4mg. for 13 yrs. Currently on 3.25, everything Rollingregret has said is exactly how klonopin has effected me (except I've always suffered from extreme anxiety) I would think by now I'd be at total tolerance but it still helps. If It does ever completely stop working my life will be 100% destroyed and I'd have to hurry and check myself inpatient before I did something stupid. Not much else to say except I'm still enjoying life, I work, have a great wife, family, pets, money I just pray to GOD if there is one this med doesn't stop working:( :)

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I can't live w/o klonopin. To me it's worth the memory loss and addiction as long as it's still somewhat effective. I've been on an average of 4mg. for 13 yrs. Currently on 3.25, everything Rollingregret has said is exactly how klonopin has effected me (except I've always suffered from extreme anxiety) I would think by now I'd be at total tolerance but it still helps. If It does ever completely stop working my life will be 100% destroyed and I'd have to hurry and check myself inpatient before I did something stupid. Not much else to say except I'm still enjoying life, I work, have a great wife, family, pets, money I just pray to GOD if there is one this med doesn't stop working:( :)

Well, after 13 years it doesn't look like you are going to develop a tolerance problem. And just as needing Klonopin can be interpreted as an addiction, being crippled without the med is inhuman and one could argue that anxiety is an addiction.

I do not disagree will gill's statement. Jay and others have also expressed similar concerns. In general, addiction is a product of taking more of a med than needed. This is commonly seen in strong pain killers as well. As a rule, no medication at all is the best thing. But the fun thing about rules is breaking them (my little joke for the day).

And HPPD is a cruel, twisted little beast requiring treatment/management tailored to each individual.

With medication, finding the effective dose, then using that or just slightly under will help. Occasionally testing slightly lower amounts can be useful. The fact Klonopin has not lost effectiveness for you in all these years is strong evidence that your brain actually needs the stuff (at least until you find something better). And that you are not taking too much. (of course you can discuss all this with your doctors if you wish - I ain't a doc)

Otherwise, glad you have a solution to enjoy a productive life...

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Just wondering...does your HPPD get any worse permanently (or just return to baseline) after..oh say, a night like last night (I'm making a very big assumption)?

well id say i dont think it does get permanently worse after gettin wasted, just temporarily... ive found that alcohol has a much worse effect on me that afew drugs really its weird, infact sometimes i think MDMA makes it better o:

if i get really drunk the next day or 2 is total hell, but i can drink the exact same amount and take MD on top of that and the next day is nowhere near as bad its really weird

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well im definately glad to hear alot of people have been successful and not ended up as horribly addicted as people make out, if after 13 years its still working for you im very happy :D

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Well there's nothing too horrible about being on klonopin in my experience, except I'd say to definitely avoid alcohol if you or anyone ever takes it. Combining the two definitely led me to problems.

The main problem with klonopin, again, is coming off the stuff. So it's just important I think to plan ahead as far as how long you'd intend to take it if you do, because, it's real easy to get stuck into taking it a long time just to ward of withdrawals, in my experience....

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well id say i dont think it does get permanently worse after gettin wasted, just temporarily... ive found that alcohol has a much worse effect on me that afew drugs really its weird, infact sometimes i think MDMA makes it better o:

if i get really drunk the next day or 2 is total hell, but i can drink the exact same amount and take MD on top of that and the next day is nowhere near as bad its really weird

Forgive me if I misunderstand or if this question seems impertinent - but are you doing this now? And if so, do you really want to get well again?

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""A lot of David's (Kozin) links back around that time really helped me get the information I needed to show the doctors at the mental health clinic. I was suffering to no end, but I was still able to articulate the issue clearly and to show that it's not just the internet (although I printed many pages of pertinent threads from the previous form of this board for anecdotal support).

What were the links you found most helpful? Send me an e-mail to dk@hppd.co

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Hey David, good to see you around here. I'd like to post the links, but hasn't the website been fundamentally altered (just like us) since 2007? I'll try to remember which link I used but Alice, if you want some sure hits, google stuff concerning Dr. Abraham's studies with clonazepam and HPPD. I think he had a website back in the day that showed the fMRI images of HPPD patients. Also, print out journal article (even just abstracts) for ones discussing the contraindication of seroquel for HPPD. I brought that to a pdoc (lousy one) and he didn't even bother to read it. The one who helped me, took a good look at all of it. Also, just printing out threads from the "what works for you" sections gives good anecdotal evidence. I have to think that 5 years later, there's even more concrete evidence that clonazepam greatly improves HPPD symtpms.

FTR, my opinion is the same as 1998's, I need clon, it doesn't do me any harm, my life would have crashed and burned had I not been saved by it. I'm in the process of trying to get off and while difficult, it's better than going stark raving mad. I got my life back. That being said, I've been on a taper from 3 to 2.75 for over 3 weeks and I haven't stabilized. I'm really worried that my HPPD hasn't abated over the years and that I still require a holding dose and that I can't come off clonazepam.

What do you guys think? 3 weeks still with symptoms? I did go through the typical 10 days of hell when I reached a peak and it gradually abated, but I have low level symptoms such as dissociation, dizziness, mild head pressure. They go away with exercise, but I definitely won't be able to permanently deal with them (i.e. I'm praying my stabilization to this dose is just taking very long). Haven't had a drop of alcohol or caffeine at any point since I started my taper from 3.5 in mid december.

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rollingregret, I went from 3.5 to 3.25 and I was shaking, unable to sleep and fealt like I was on a small dose of acid all over again for 1 month. After that full month, I stabalized and fealt just like I did on 3.5....Don't worry it just takes a long time. I was flipping out thinking it would never end but it does.

PPl w/o hppd have a hard time and quit working ect.. when going down 5mg of valium (which that is = to) just be happy if your able to sleep. Staying up all night feeling like you're going through opiate wd's 24/7 made me suicidal.

When you think about how long the half life (sp?) of klono is (around 72 hrs max) and you keep taking one after another on top of each other daily, it's going to take a hella a long time for our gabba receptors to reset properly.

Only 15% of ppl get permanant damage from benzo wd and that's after taking it for over 10 yrs at a high dosage (Dr. Ashton's words) take care, good job on getting down on you dose. I'll eventually be at 2mg and stick there till I die lol. Later!

PS. ppl always say don't take anything for wd's but clonidine and soma especially helped so much. Make sure you stay away from alcohol it hits the same receptors and will only delay your w/d process. Check out benzobuddies.org crazy amount of info

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