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imapumpkin

Klonopin Long Term Use - Anyone Else?

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I'm starting to feel like a big idiot/like I was mislead by my doctor. When I went on klonopin at age 17 I was a child--going through some family trauma and experiencing panic attacks and some agoraphobia, and who knows, it might have been related to POTS because anxiety and POTS so often overlap. I was young and naive and trusted my doctor and NOBODY told me that klonopin is only supposed to be taken for longer than 4 weeks for anxiety and after that it's considered long term use and exponentially increases a patients risk for tolerance and benzo withdrawal syndrome. I am 25 now. I have been on this drug for EIGHT years (albeit, for several of those years I was on a tiny dose of 1/4 of a .5mg pill daily) but still...I'm just now doing the research that is telling me long-term use of any benzos can be doing more harm than good. I'm scared. I'm reading all these articles about withdrawal symptoms lasting months-years and causing hallucinations, psychosis, seizures, suicidal thoughts and even death. I would never quit cold turkey, I absolutely intended at some point to wean off very gradually, but still, shouldn't a doctor tell you "Oh hey, I'm putting you on this drug that will help you now, but sc**w you over in the long run?"

I'm still recovering from heart surgery and now I'm terrified at the prospect of having to put my body through more trauma.

How many other people here have been on klonopin for a number of years? Klonopin seems to help me but I dont know how much of that is because I'm just feeding my head because I've built up a tolerance, how much is helping my POTS or how much I actually need it for anxiety since I am also on lexapro. I have no judgement whatsoever for being on klonopin because it helped me a great deal but in the future I would like to have babies and one cannot be on benzos while pregnant so I figure I might try and go off it while I'm already out of commission (no job, living at home with my mother).

Blah. This makes me very nervous. What has been your experience with long-term use of this drug?

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Don't panic. My grandmother has been on Klonopin for more than 10 years and is doing fine. I've been on Klonopin for 9 months and I know the withdrawal is not a piece of cake, but compared to my POTS related anxiety attacks... it was a piece of cake! So take it as long as you need it and taper off VERY slowly. You should be fine. Hugs. I'm on Klonopin now and I'm upping my dose to over 1mg for more than 2 months. Anybody who thinks this is a bad idea has no idea what to be in my shoes feels like. Same goes for you.

BTW, my POTS and anxiety are overlapping as well. Did Klonopin and/or SSRI help you control these HORRIBLE attacks/surges? To what extent? How often do you get them?

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Well all this benzo talk lately has gotten me really upset. I've spent the past few days questioning whether I actually have a case of benzo damage misdiagnosed as CFS... wondering if it caused the dysautonomia... worrying that this stupid drug I took 15 years ago has caused irreparable damage to my health. But you know what - there's nothing I can do about it at this point, so I'm trying to let it go. I was only on it only 6 months and did not do well, but you'll find plenty of people who will say the opposite, that it gave them their life back, they were on it for years, no problems. I think it's a very individual thing. As far as withdrawal - same thing, depends on the person. Long protracted nightmare for me... others on much higher doses for years had an easier time coming off. The risk of seizures, hallucinations, and death are more likely going off cold turkey. Which I stupidly did, but none of those three things happened. So I would tell you to try not to worry because you might be just fine. But yeah, it would be nice if the Doctor handing it out would issue a warning with the prescription... "there's the potential for dependence and withdrawal." Just have a good plan when you decide to get off - a slow taper. I think you should focus on recovering from your surgery first though and be pretty well healed before taking this on.

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and still on cloz...don't want 2 get preg, no birth control as that always makes me off, condems only - howeveri think i am somewhat infertile.

while on klonopin i know u cant get preg so i am scared of an "accident". have been thru late preg miscarraige way bfore POTS (maybe).. as far as I know he, my son/s r the love of my life i cannot thank god more 4 or less. my son i lost -i wasn't on anything: birth control, antidepressents or any pharm. drug.

benzo's have helped me so much more than anything dx'd. i will ask my neuro next time i see him regarding long term side effects.

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Im not giving medical advice but I think some of your fears are unwarranted.

Klonopin, in my very humble opinion, is not the hazardous brute benzo that everyone thinks---especially

for someone with POTS or something like MS.

Ive been on it, at higher doses than you for over 2 years. A friend of mine with MS has been on it for 20 plus years.

My physician who is elderly says that in his experience it can be a miracle drug if used properly and effectively.

Apparently, for some people it calms the various nervous systems and makes life literally liveable for a certain

percentage of people. I am one of them. Before i "accidentally" tried it, I was suffering from near debilitation

from agitation, shortness of breath, palpitations, and any exertion.

I use klonopin as needed, careful not to go off it, and to use as little as possible. But even so, i use it every day,

whether its 1 mg or 2. There are many nghts i wake up agitated from sleep disorders (classic hypoadrenia,

and fibromyalgia) and it calms my nervous system down.


Dr. Cheney has done extensive work on the drug combination of K and doxepine. For some, this combination

stops excitoxicity---the uncontrolled firng of neurons. I believe also klonopin helps some people to sleep and

to deal with histamines and food allergies.

If you google it you'll definitely find people who shouldnt have been on it going through withdrawal. They were

misprescribed.

But for those who it helps, it can be a lifestyle saver. Some people cannot function without it. Drugs apparently

are incredibly individualized as to what helps who. As always, use cautiously and under supervision.

But I think its unlikely that its going to do long term damage to you, and you can certainly wean off it if you choose.

I dont feel it has harmed me. I had my heart checked out of course when i got sick, and its important to make sure

your heartbeat and rythm is consistently good.

Remember, many if not most of the things we fear never happen. Instead, the anxiety of worrying about

it is what does damage. Good luck.

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right, i totally agree spinner, only thing is the memory loss which I just stumbled across albeit not that worried about as i already feel i have alzheimers lol. just i am a female who is not on birth control:) i don't think klonopin has worse side effects or withdrawal (I hope for me? but I have heard some weird stories) than bb's. same idea, about tapering off to some effect. I take 2 mg bad days and 1/2 mg others. yesterday, i managed to clean my whole house with a pulse of +150 and high bp on 1 mg. but i did it and felt proud.

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Guest Alex

I've been on klonopin since I was diagnosed with POTS in January of 2011 until last month -1 year, tapering included.

Started at 1 mg a day for 3 months, continued with 0.5 mg a day for 3 more months or so, then tapered (very slowly) for the following 6 months (give or take). I've seen many drs and I was told by most of them that this is a 'safe' drug to take, and that I am taking such a small amount. I learned first hand that for me things were different. The drug did not help me at all. In fact it proved to be more harmful than helpful in the long run as I am now facing pretty nasty problems. Now the very dr who prescribed the klonopin to me suggested that 1. I should get psychiatric help for some of these new problems that I am dealing with, and 2. I should also consult more drs since some of my recent health issues (issues I've developed in the past 3 months) are outside of his area of expertise.

I've posted my story and opinions on this subject before, and I honestly do not want to raise more issues or question marks, particularly for those people here on this forum that have benefited from the use of benzodiazepines.

Bottom line: not everyone will experience the same kind of issues just because I am going through a bad withdrawal.

Alex

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If you taper with a doctors blessing that's great. There are couple well known taper regimen's on the internet from fine psychiatrists as well. The thing people need to be aware of is that the tapering way of discontinuing the drug from long term use is not optional. There's been cases where people stopped the med cold turkey or with a daring taper and thought they were off scott-free from any symptoms - till about day 11 if you can believe it. The half life is so long that some people do not begin to even get withdrawal symptoms till that late in discontinuing it. At day 11 with the shakes and the whole cascade of withdrawal the people could have gone into siezures. But the doc simply told them to 'take your Klonopin' and then he began a taper program with the people. You can most likely be fairly relaxed in this - there is no hurry - you are working toward one of your goals, you are doing it with a doctors blessing hopefully just in case you run into any unforeseen snags, and the taper can be very very slow so you maintain comfort. I personally am having a worse time trying to get off of Clonidine - that's tricky with blood pressure issues, rebound etc... so every drug can have it's tussle with the human for sure - not just benzos. Good Luck on whatever you do! And the past is the past so good work on trying to let that part go!

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Thanks for the feedback!

Altruism- Klonopin has helped with panic attacks. I can't tell so much with the SSRIs because they don't work as fast...klonopin kicks in about 20 min after taking it so you can feel its effects and it alleviating anxiety/attacks. When I started on benzos i was 17 and having panic attacks every few weeks. The klonopin has helped and with therapy and exercise and the SSRI I haven't had a full blown panic attack since college. Now the closest thing I get are periods of intense anxiety very rarely, maybe once or twice a year, that can only be described as all-over non-specific deep discomfort, uneasiness, the need to to the heck out of the place I'm in but no real physical symptoms just a general all over tweaky twitchy feeling. When I was having anxiety attacks as a teen it was tingling fingers, shortness of breath, depersonalization and the intense fear that I was somehow having a heart attack

Spinner- I agree that klonopin can be extremely helpful and I believe it helped me get through a very difficult time and allowed me to go away to college and get my independence back from my anxiety...who knows now if it also might have been POTS? I'm not so much concerned that the drug itself is harming my body given my long term use of it, what concerns me is the fact that the longer someone is on it and the higher the dosage, the harder it is to come off of because of tolerance. Were I 10-15 years older I wouldn't think twice about just staying on it but since I want children eventually I'm going to need to be off it, at least for a while so I get nervous about withdrawals from going off it. My body is very sensitive to chemicals as many POTS patients are and I can tell even if I have missed a dose by a few hours. The stuff is potent!

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Yeah, its not for everybody that is for sure. Some people need increasing amounts, etc.

Im not one of them, thankfully.


For that matter, any drug can have a bad reaction individually, I went on Lexapro 2 years ago and almost went into mania. The stuff

fluttered my heart, made me sweat, and made me delerious.

Almost like injecting adrenaline into a hyperpots patient or someone with anhidrosis.

The blessing in all this is that if you find YOUR right med, it can be used to help you manage a chronic illness.

I have not found klonopin to be less effective over the years. I dont use more. My goal is to use less, each day is either

1 or 2 mg as needed.

It also helps me excercise. My nervous systems are messed up, and before i do my daily 1 hour slow walk i often pop a pill

and it smooths my system right out and makes me feel normal. No palpitations, breathing irregularities, headache, weak

dizzy feelings. In general it acts like taking insulin for a diabetic. Puts things right inside there somehow.

Great for a nighttime panic attack or sleep apnea event too. Wake up from a breathing problem at night and your CNS

is whacked out. Klonopin for me anyway takes care of that within a half hour, back to sleep.

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I was first given klonopin in 1995 after I started having what my dr called "really odd panic attacks" which now I know are my adreline surges. I refused to take it at first. Then when I had to fly I took one and flying was easier. Then when I knew I would be in a situation where I would get these odd panic symptoms I would take one. I took .5 like this for 6 years. I did not take any when I was pregnant, and had no withdrawl effects. In 2003 when my H-POTS was bad I started taking .5 almost daily. After finding out about my adernline triggers, bad startle refelx I still take my .5 but if I am going to try and go out to a big event (funeral wedding etc) I take an extra .5 pill. Klonopin is the only medication that has improved my quality of life over the last 18 years.I wish I had taken the prescribed .5 and extra pill during triggers long ago(my dr begged me to take more years ago but I felt like I was a failure if I needed a pill to get through a family a event or noisy school). Without it I could never attend my child's orchestra concerts or school plays. It is helpful for after the fact major startle adernline issues(like rock blasting at 6am) an extra .5 takes me heart rate and shaking from such events back down in about 3-40 minutes. Besides the excerise, extra fluids and salt intake, klonopin is the only thing that has helped. It has been 18 years and one .5 has the same effect in did when I started. If I take 2 .5 I feel a little woozy. Only once during a 4 hour MRI study I took 3 .5 in one day and I was sleepy and out so I do not think I have built up any tolerance over the years.

I also have EDS (most likely vascular, waiting for blood work but strong family history). When I look at my family members who died of vascular eds, the ones that took klonopin/xanax or some sort of pill to manage stress levels lived 15-20 years longer. I think that klonopin really helped during the blood clot scares I have had. My family with vascular EDS , my dad (I didnt know this till after he died) took klonopin for 20 years, he lived to 64 and his sister has lived to her 90's on klonopin/xanax for years compared to my 3 cousins that died at 36,39,45 and my Grandfather 41 and my Uncle 45 who took nothing. My dr said certain forms of stress for people with EDS are alot worse then a klonopin a day.

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I want to say thanks to all that responded. My doctor dx klonopin (.5) twice daily as needed. I have been so paranoid of becoming hooked, I haven't really been looking at the big picture. When I have taken them, my symptoms so much more in check. And especially now with leaving on a big family trip (First one since diagnosis of POTS, so my whole system is outta sync)

Thanks for posting : )

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i just stopped taking klonopin this week. I have been on and off it for 8 years (i am 27). I was only taking half of .5 mg pill at night to help me sleep. Now that i am a bit more active I felt like i was tired enough to sleep on my own. So i tapered down that half pill so slowly over a few months, lol. I was scared.

I did have a week of weirdness when I started cutting in down some. Maybe this sounds super weird but i will share...I would go somewhere, like grocery store, and then get in my car and have this panic, like what it wasn't my car i got into but one that looks the same and had to kind of talk myself down for couple of seconds that obviously its mine because i had the keys to open this car, etc. It was sooo weird!! but that is gone now and i am optimistic to have one less medication!

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What are the advantages/disadvantages of klonopin vs Ativan? I've had my doc who agreed to let me use a little Ativan (.05-.1 mg) daily express concerns about being on Ativan too long. But if it leaves your system quickly and it can be taken as needed whereas it sounds like klonopin builds up in your system, what is the problem? Is Ativan addictive? Sounds like klonopin creates a dependence...

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