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Posted

Okay so basically I've had hppd since February 2016, my symptoms were in my opinion very severe especially the anxiety and dp/dr, after a month of no improvement I was so desprate I got a private doctor to prescribe me clonazepam 0.5mg x2 a day and it was a miracle within 2-3 months I was pretty much 100% better but the clonazepam was causing memory issues so I decided I was 'cured' and tried tapering as advised by my doctor 0.25mg every 2 weeks and following this I had some withdrawal symptoms mostly confusion, getting angry easily and becoming manic at times, I was however smoking weed again everyday at this time (not sure if it helped with withdrawal symptoms) for around 2 months before I tapered cause I believed I was better and it also never gave me any indication it would bring back or make my hppd worse, I came off clonazepam for about 2 weeks and everything was great I was 'cured' then one night after taking some questionable cannabis oil pills it all hit me like the first time and I was experiencing sever symptoms and had to leave my job and of course went straight back on clonazepam on normal dosage (also quit weed and all drugs again including caffiene and cigs etc) and things got a lot better slowly again and I returned to work which brought back lots of anxiety to the point I had an anxiety attack every night after work and only slept 3-4 hours max and of course this made my symptoms a lot worse and I had to quit work again as I believed it would make me premenatly worse if it carried on or just end in a massive breakdown, this was 3 weeks ago and my sleep is almost back to normal with me now getting a solid 6-7 hours and my anxiety is mostly gone except my dp/dr is coming back mildly and it's horrible I haven't experienced this at all since early on when it began last year before clonazepam, my doctor and every doctor I've seen will not prescribe me anymore clonazepam and I am being told I have to wean off it even though I'm not ready and they know this full well but they are going to starting cutting my down By force very soon and the though of that is terrifying, so I was looking for some advice and help on here about weaning off clonazepam safely and weather it's just gonna make me go full blown hppd again because honestly I can't live through that again it was extremely traumatic for me, I've been prescribed lamotrigine but I'm too scared to take it due to the horrible stuff people have said about it on here and elsewhere on the web and it looks like it's the same as clonazepam it will mask it for awhile then I'll go through withdrawal hell if I ever try coming off it. Has anyone here successfully come off clonazepam and isn't on any medication? If so are your symptoms getting any better at all? Sorry for the long post I'm just so desperate and wanted to get down as much info as possible but I really feel like this is make or break for me, I have no family support and no doctors want to listen to me, thanks for reading guys I hope you can help.

Posted

Man, that's one hell of a run-on sentence. Sounds like you're struggling. Why won't your doctors just let you remain on Clonazepam? What's been their reaction when you tell them how bad your symptoms are? If I were you I'd try and stay on since it sounds like it's been a life saver but if you have to taper off just remember to do it really slowly and have a backup plan like a therapist, exercise routine, healthy diet and so on to make you feel good. 

Posted

I've seen all the doctors in my practice and every single one tells me that clonazepam is a very addictive drug and is no good for long term use etc etc so my dosages must be reduced, I asked them to prescribe me clonazepam or any type or anticonvulsant when I first had symptoms and was told flat out that's not going to happen, they instead tried putting me on anti psychotics and would allow a 2 week course of diazepam which was absolute bs and I said I'll go private, so I paid a stupid amount to see a very good psychologist who actually listened but wouldn't prescribe me anticonvulsants although was happy to prescribe me clonazepam.

I now see a new doctor in the surgery, I can't remember his position but he is not permanent there and he has to abide by what the other doctors in the surgery tell him (his words) as he would be contradicting everything they have told me about carrying on with the clonazepam which he has no problem with me being on and he is very open minded and has actually listened to me properly and not looked at me like I'm just insane like the rest of them, he had a patient with migraine aura and prescribed anticonvulsants to her and they apparently really worked so he is more than willing to do that for me, so I tried keppra with horrible side effects so had to quit and now been prescribed lamotrigine but I'm very scared to take it especially while I'm still on clonazepam cause I know they both work on gaba and can have a synergistic effect which could make it even harder to get off clonazepam.

I've got my first therapy session next week and actually really started living a lot more healthy, going gym regularly and eating well which I didn't bother with before, so ive actually started cutting down my clonazepam as of tonight by 0.125mg and from research online I'll lower it once every two weeks by the same amount, but I already know it will be hell, and possibly even worse due to hppd as it will most likely massively increase all my symptoms I just pray I don't end up in the state I was in on my first month my life literally was unbearable and completely unlivable. It's bad enough seeing what benzo withdrawal does to people without hppd, hence why I'm asking if anyone on here has any experience and could help me out with any tips on withdrawing, like any supplements that help etc.

Posted

I don't think anything can help with withdrawals but there's all sorts of information on this site about ways to cope. I think just as long as you do it slow you should be OK. 

Posted (edited)

Don't do the weed.

 

Klonopin withdrawal is only really bad at 2mg+ to 0. 

 

Any doctor that puts you through Klonopin withdrawal over the span of a month is a douche.  

 

If they choose to take you off it then they should allow you at least a couple months to properly ween off it.     Klonopin is a very safe drug. 

Had they put you on Xanax and had you on a high dose and then decided to stop you cold turkey, they are really pieces of sht because that could cause Grand Mal Seizure I believe.   

Luckily the Klonopin is longer acting.  People have used Valium to get off high doses of Klonopin.  Ultimately, Klonopin is a very good, SAFE drug.  

 

Let's put this into perspective of the safeness of Klonopin comparing it to the substitutive cathinone Bupropion (Wellbutrin): 

1. Klonopin is a controlled-substance.  Bupropion is not controlled.  

2.  Bupropion is very closed related to a Schedule 1 street drug which emerged from Central Western Africa.   There is no street drug equivalent of Klonopin. 

3.  The highest amount of Bupropion XL doctors prescribe is 300mg (which is 2 pills, the lowest does is 150mg).  If you take 900mg, which is 3x the higher tier therapeutic dose, you may end up in the Emergency Room with an amphetamine overdose.   Amphetamine overdoses can have permanent persisting after-effects such as that of HPPD and perhaps even worse!!!

You can take $200,000 worth of Klonopin and live.  

You could take 30000x your dose and be fine.  

$100 of something over-the-counter can kill you.  

 

I do not advise taking that much by the way!!!! I am not a doctor.   

 

 

   

Edited by mgrade
Posted
6 hours ago, mgrade said:

Don't do the weed.

 

Klonopin withdrawal is only really bad at 2mg+ to 0. 

 

Any doctor that puts you through Klonopin withdrawal over the span of a month is a douche.  

 

If they choose to take you off it then they should allow you at least a couple months to properly ween off it.     Klonopin is a very safe drug. 

Had they put you on Xanax and had you on a high dose and then decided to stop you cold turkey, they are really pieces of sht because that could cause Grand Mal Seizure I believe.   

Luckily the Klonopin is longer acting.  People have used Valium to get off high doses of Klonopin.  Ultimately, Klonopin is a very good, SAFE drug.  

 

Let's put this into perspective of the safeness of Klonopin comparing it to the substitutive cathinone Bupropion (Wellbutrin): 

1. Klonopin is a controlled-substance.  Bupropion is not controlled.  

2.  Bupropion is very closed related to a Schedule 1 street drug which emerged from Central Western Africa.   There is no street drug equivalent of Klonopin. 

3.  The highest amount of Bupropion XL doctors prescribe is 300mg (which is 2 pills, the lowest does is 150mg).  If you take 900mg, which is 3x the higher tier therapeutic dose, you may end up in the Emergency Room with an amphetamine overdose.   Amphetamine overdoses can have permanent persisting after-effects such as that of HPPD and perhaps even worse!!!

You can take $200,000 worth of Klonopin and live.  

You could take 30000x your dose and be fine.  

$100 of something over-the-counter can kill you.  

 

I do not advise taking that much by the way!!!! I am not a doctor.   

 

 

   

 Quit weed coming up to 2 months ago now and won't be smoking again let alone drinking alcohol or any other mind altering substances. I've already starting weaning my self off clonazepam very slowly at 0.125 every 2 weeks so I'm now down to 0.875 a day and withdrawal is already starting to kick in. I have some Valium laying around but I'm not touching that stuff ever again, gets me high and then I just crave it, never had anything like that from clonazepam. I don't really want to go on any other medication either I just wanna live without it if possible, if my hppd gets real bad again I've got a prescription for lamotrigine that I will try as a last resort.

Posted

I understand when HPPD is bad that one becomes very sensitive to medicines and seems like nothing seems to help. 

I know. 

 

But how can you measure a cut 1mg pill to 0.875mg?  Do you have a special scale?

You seem way more organized than me.  You must be cutting it in quarters and then cut that in half.  I always just cut it in chips. 

 

so in other words you are down to 7/8 mg.  

 

 

Ideally, you should be on an 1/8 once or twice a day.   (not in the weening process) But how they had prescribed it. 

 

With HPPD, the line between too little and too much is paper thin: sort of like Oliver Sachs and finding the right dosage for the L-Dopa trials. 

 

Do your doctors even know what HPPD is?

 

 

Posted

My pills have cross hair lines so can be broken up fairly easily into quarters, and no every doctor I have seen doesn't have a clue or even care what hppd except for my new doctor who is very understanding he had never heard if it before but I educated him on it and he accepts that is what I'm suffering from even though I don't have a diagnosis as of yet.

Posted
1 hour ago, mgrade said:

I hate to say this ....but.....you don't seem real.  

I've seen a few of your posts accusing people of not being 'real' and I have to say it's massive insult and extremely weird, I'm here asking for help with this terrible condition, nobody would put their time and effort in to writing these posts pretending to have hppd! And yes crosshairs like a scope as in two lines crossing over each other so I can easily split the pill in to 4 pieces, if your gonna keep accusing people of being 'Russian spies' and not being 'real' then please go away and don't comment.

Posted

I agree, very odd behaviour... not sure if it is some misplaced joke... but mgrade, cut it out, the guy is clearly in the same boat as the rest of us.

Posted

Sorry.  Watching too much CNN.  I am surrounding by Trump haters and they love to blast CNN.  And complain and complain.  At this point I don't know what to believe I am so confused and jaded.    I've been here a long time.  I usually help.   Sorry.   I am here to help.  I believe i can help a bit.  Sorry if you took offense, it was not meant to be offensive.  Seriously, the craziness that is going on here in the USA, is driving everyone including me nuts.  I didn't mean any harm.  

 

There is this weird air lurking just beneath (semi-latently) the surface of the Liberal state that I am in in the USA.   There is really a feeling of fear, confusion, and loathing going on in the public.  

 

Weird. Yes.  Most people can attest that I am weird. 

Contemptuous or insulting is not really my style at all.  

 

This is just a symptom of my severe panic.  I am sorry if it seemed insulting.  That is not my intent in the slightest.   My intent is pure and from love. 

Posted

Anyway moving on...

for anyone that has been reading this post or who may come across it in the future I will be updating it as best as possible with my schedule for tapering and results to help you guys a gals if you find yourself in my situation.

the first cut has not been too bad however I have noticed an increase in a symptom that I very very rarely noticed before and that was the morphing of objects or slightly breathing walls this has been a daily occurrence for the past couple of days and has stayed roughly the same, it is fairly mild still but it is very noticeable and causing me anxiety as it's not something I've particularly experienced a lot before.

dp/dr is pretty much non existent thank god (worst symptom in my experience) , however depression is defiantly up a bit and also anxiety but that's mostly situational anxiety and anxiety from noticing visual symptoms. Sleeping has become more and more difficult every night and has become quite broken with me waking up multiple times through the night and fairly quickly drift off although I get at least 8 hours (broken sleep) if I force myself to. Also I have noticed an increase in visuals when I close my eyes especially before bed with random sometimes horrible images popping up or just straight up low dose lsd closed eye visuals, this is definitely making it harder to fall asleep.

Now as of tonight I cut down my dose again by a 1/4 of a pill so that makes it 0.750mg per day, I take one split pill anywhere from 6-7 depending on what time I have dinner and my last whole pill from 10-12 again depending on what time I want to go to bed, tonight I have had terrible trouble with sleep (hence why I writing this at 3am)  but other than that no problems, I hoping by doing a slow weaning process I am less likely to suffer from bad withdrawal, and from what I've read I should experience a lot less withdrawal after I am completely off. I shall continue to update if any drastic changes occur if not it will be once every 2 weeks when I drop my dosage.

 

Posted (edited)

You are on such homeopathic doses that withdrawing from the highest dose you were on should never be an issue.   But potentially you may need a Benzo.  After 9 + 1/2 years of hearing people's stories, I have learned about the doctor's (of the UK) general reluctance to maintain a prescription for Clonazepam.  

 

The issue with Klonopin is a heaviness in the form of dullness and mild sedation and a mild tranquilizer hangover, possibly because of its half-life; also another issue is a delayed onset of action. 

 

Certainly, low-level Lorazepam is a better fit perhaps, given its immediate effect upon ingestion [as is the case with Valium (but with Lorazepam, a much shorter half-life)], and concerning the inherent obstinance of the doctors in your neck of the woods (certainly, at least, as it pertains to Clonazepam).

 

This is obviously a new disorder, for you; you have basically diagnosed yourself.  

 

There really are no panaceas to this disorder.   

 

Sail smooth.

Edited by mgrade
Posted (edited)

I totally agree Jay. 

 

I want to sort of describe it as like a binary thing.    Like either it is 1 for On-Klonopin, 0 for Not-On-Benzos.

When HPPD is really bad, sometimes 1/2 of mg of Klonopin is too much.   So in the midst of bad HPPD I think one tends to keep benzos on the lowest possible dose of Klonopin.  So when in the midst of HPPD, man, the sensitivity to drugs is potentiated.    So yes, I totally do agree. 

 

I have gone through times in my life where I went from 3 or 4mg to zero.   So I went from around 4mg/day for 30 days and then nothing.  That was hell.   

What I think I am trying to say is what he is doing is a good idea.  And should be manageable.  All things considered, I think that reducing Klonopin from 1mg to nothing is doable, especially the way he is going about it.  Also things like generics vs. other generics are also things to consider.  I have found some generics to be much more withdrawal causing than other generics. 

Edited by mgrade
Posted

INTRODUCTION TO PHARMOKINETICS (With Specifics for the United States FDA rules and regulations)

The half-life of Klonopin averages 40hrs. So, on day 4 you still have 50% of the dose you took 2 days prior in your system. 80% of the day prior. The value obtained with humans for available active clonazepam is a 3.3 fold increase from your daily dose. 

So, if you are taking 1mg/daily you achieve a steady state dose of 3.30mg
If you are taking 4mg/daily you reach 13.2mg

If you are taking .5mg a day, the steady dose = 1.65mg

I created a calculator you can enter in a dose and it will calculate your body dose equivalency for 7 days. It is a google doc, I am pretty sure I locked  the formulas, so only change the one value and press enter and it will change automatically for you.

https://docs.google.com/spreadsheets/d/1EjTl8-ldbA_ZVaAgwrzjT613wKl3jAZxha2muLlkl8U/edit?usp=sharing

Another very simple way to achieve the same thing is to take your daily dose and multiply by 3.3 or even more quickly by 3.

This is a quick way to see why recommendations are for lower dose ranges. 

Dose Daily                 Effective Dose Potency at 7 Days

0.25 0.83
0.5 1.65
0.75 2.58
1 3.3
1.5 4.95
2 6.6
2.5 8.25
3 9.9
3.5 11.55
4 13.2
6 19.8
10 33
15 49.5
20 66

Typically, these are measured in nanograms per milliliter. This is only for clonazepam, and the half-life of a 2mg dose in a 2003 study was approximately 39 hour +/- 9 hours. Use of antacids can affect this number, liver function, kidney function and food.

 

 

 

The average difference in C(max) and AUC between generic and innovator products was 4.35% and 3.56%, respectively. In addition, in nearly 98% of the bioequivalence studies conducted during this period, the generic product AUC differed from that of the innovator product by less than 10%.

 

It also explains why having a day or so lapses in a Klonopin script are infinitely easier to handle than a Xanax script. Because the drop in concentration takes the same reduction, but Xanax half life is 11.2 hours. 

Klonopin Dose Calculations (Rough Estimations)

I would discuss these with your doctor, and I also call them rough because other medications can potentiate the level or medications or supplements may occupy the enzyme in the liver that break down Klonopin, so it stays in the system longer. There are many variables, but this is a good general demonstration.
 

.

Posted (edited)

From the notepad of Samuel Roth:

 

Factors influencing:

1. DNA variants toward slow metabolism via cytochrome p450 (abberations) 

2. Drugs such as Phenytoin etc.

3. P-Glycoprotein inducers and antagonists

 

Serum levels of Clonazepam metabolites are more of an issue for the HPPD sufferer as they tend to have a greater sensitivity to compounds.  Nevertheless, the subsequent hours or days after the initial onset of the compound, the perceived effects of Benzodiazepines and its metabolites are often not felt or observed by the patient  (perhaps if it does, only as it applies to withdrawal, and the body's habit of having it in its system). 

~Serum levels per individual is debatable.    Xanax will have zero level in serum at 3 day.  Ativan= 5-6 days  Klonopin=16 days

 

These subsequent numbers can be influenced physiologically by the three (3) aforementioned factors:

Exact numbers are as such:  1. Xanax is fully out of your system after 56 hr.   2. Ativan: 50-100hrs. 3. Clonazepam: 90-250hrs.   

 

 

Serum levels and level of withdrawal symptoms may not be proportional.  Often, they are not proportional at all; insofar, as to say, duration of time which has passed since the initial ingestion of the compound may not correspond to the moderate-to-high serum level of that same compound and its metabolites, observed through blood-tests days later (especially as it applies to Benzodiazepines such as Librium, Diazepam, Clonazepam).  

 

 

Edited by mgrade
Posted (edited)

Immediate stoppage of Xanax (alprazolam) is HIGHLY dangerous.  It may cause a seizure.  This is given alprazolam's very short half-life. 

------------------------------

Note: Ativan IV (lorazepam intravenous) is used for emergency room treatment of Grand Mal seizure.

Edited by mgrade
Posted

A little update on my progress so far at 0.750mg daily, my visual symptoms have not got any worse but it's very annoying I still see warping of objects I never had this before tapering and I'm really hoping it goes away after I'm done.

so I have been going back to the gym properly 5 times a week (3x a week heavy weight lifting 2x a week cardio) for over a month now and it's got the point where after working out I don't have a sudden increase in dp/dr (would always really notice it on the 20min walk home) and I'm not left feeling out of it at all, in fact I feel clearer and more lucid after working out than I have in a long time.

I did however have a major problem yesterday in the gym I finished my weights session and jumped on to some cardio as I normally do for 15 mins after weights, done 5 mins normal pace rowing but was noticing I was really getting out of breath and had to take a 5 minute breather before doing cycling which never happens I can always just jump on it straight away, so I started cycling on the bike a lot lighter than normal due to being so out of breath and after 2 or so mins I decided to check my heart rate with the heart rate monitor attached and I had a 230bpm!! I knew this was dangerous and me being out of breath so badly suddenly made sense so I stopped, I don't know if this is due to withdrawl but that's what im blaming it on cause I've never even had my heart rate go anywhere near 200bpm even when I've been doing extremely intense cardio.

ive been having big sleeping problems only been getting 5-6 hours sleep since last drop in dose, falling asleep is hard due to all the patterns I see when I close my eyes and all the random images that pop up. Also experienced an anxiety attack in my sleep 2 nights ago and that was horrible, I woke up in a panic and my heart was pounding so hard and my chest felt like someone had just punched me, I was sweating like mad aswell my bed was just drenched, so I got up splashed water on my face and went an sat by the back door with the cold breeze on me for 20 mins until I calmed down, then I went back to bed with little difficulty. However last night I slept a whopping 8 hours, I woke up this morning and the way I was feeling I knew I slept well cause I had no heart pounding whatsoever and I feel pretty great today. Gotta keep fighting this but damn it's hard.

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