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Is this too quick to be weened??

I have been taking Klonopin 1mg, 3 times a day for 12 years. I started taking it after postpartum panic attacks showed up out of nowhere. Unfortunately, the doc that saw me did not warn me about the issues of being on the medication for such a long time – I was a young teen mom who did not know the dangers of this until a few years later after someone sued him for malpractice and had to leave the practice. Over the years I have tired to ween off the med but most of the time I was given some kind of anti-depressant or another - ALL of which sent me into multiple cases of serotonin syndrome and required the need for hospitalization EACH time. The weening had always failed. Fast forward a few years to last year - my doc of 2 years simply left her practice without any notice whatsoever and I was left scrambling to find a new one. Eventually I located the only Doc ( an NP) within a 40 mile radius that was taking new patients and could see me without having to wait 6 months for an appointment. The first appointment this past October was HORIBBLE. I was belittled and made to feel horrible by her about my Klonopin dosage - so much so that I left her office crying  for hours and hours (but with a new RX script). She was reported to my insurance company (THEY made me give them details and file when I simply called them for a list of docs in my area who took my insurance and they learned what had happened) but nothing came of it. I had to see her 3 months later though, because AGAIN, I could see no one else for months. When my next and most recent appointment came up last month I was questioned about the report made as I sat there disoriented with the flu and the 105 degree temp that tagged along with it. I was so out of it but I remember telling her that my anxiety and panic disorders were MUCH WORSE when sick. By the time I left, she had refilled my regular 1mg tab, 3 times a day script for ONLY ONE month and it was agreed that I would start AGAIN to ween off the medication the next month. A few days ago my husband picked up my RX. I didn't see it until yesterday but when I DID, it alarmed me. Rather than weening off the med SLOWLY from 1mg 3 times a day, the bottle had only 45 pills instead of the normal 90 pills in it with these EXACT directions: 'Take one tablet by mouth twice a day for 2 weeks, then take one-half tablet by mouth two times a day for 2 weeks, then stop.'
I began FREAKING out! I called the pharmacist who said that this cannot be done! I have been on a pretty high dose for over a DECADE and it would take a LOT  longer than a month to ween off of it. She suggested I contact my Dr.'s office, which I did and was told the directions would NOT change and the few pills I have now were ALL  i was ever going to get EVER, so I better follow the directions for best results in my weening process. I had my mom come over and she helped me make calls all over town trying to find out if this was safe or not (which I know darn well without being told that it is NOT). We called so many doctors looking to get me in somewhere else but there was NOTHING! No one could offer up any advice short of going to the ER (at this point I was well-into my 8th panic attack inside of 2 hours and each one was worse than the last.) My family doc refused to even deal with assisting me in advice.  (Now, just a bit of side info needed to help you fully understand everything a bit clearer: this past July I had major surgery which I woke up in the middle of and now have severe anxiety, nightmares and PTSD over. 2 weeks after that I was sent to the ER for dehydration from the stomach bug but rather than giving me a nausea med IV, I was given an anti-psychotic that messed me up beyond horrible (I spent 12 following hours sitting in the cold shower screaming hysterically as it felt like my brain was on fire) and because of the 2 hospital incidents I have now developed a mild but serious degree of agoraphobia. The only 2 times I have left my home in 9 months were to see this NP and I had to be VERY sedated to do so. Also, the manufacturer of the brand of Klonopin I had been on for over 11 years was bought out by a different company who changed the medication formula completely and now the med is only about as HALF as effective (at most) as the discontinued brand, but needed nonetheless- I have tried 4 other manufactures brands but they all caused their own issues and bad side-effects from what I am told from my doc, is the inactive ingredients that can and DO completely change how a med can work in a person, especially for someone who is hyper-sensitive to meds like myself. I have a laundry list of health problems: type 1 diabetes with severe nerve damage in over 75% of my body (including the inability to feel or move any part of my body from the knees down), 2 heart conditions & a pacemaker, high blood pressure, insomnia since 3 years old, Rheumatoid Arthritis, Diabetic Gastroenteritis. other causes of PTSD, and Seizures just to name a few and I just turned 30 last month.
  Right now I am terrified, to put it mildly, and I have NO idea what to do, who to talk to, or anything really. My hours of freaking out earlier have mentally exhausted me but I am too restless for sleep or rest – I have and have had pure adrenaline coursing through me all day and I feel like I'm in some sort of 'brain fog' mentally. I am terrified despite how much I try to convince myself otherwise, that I am going, or soon will go, crazy, have a permanent breakdown or will feel horrible like this for a long time, if not forever. I saw a therapist for 8 years and it really didn't do much. My husband does not understand much of what I'm going through, my mother has a lot of medical issues of her own she is having to deal with and I have ZERO friends to talk to. Nothing helps me chill out and relax and I have both desperately and wholeheartedly tried almost everything from yoga, exercise, walking in the fresh air (I physically can not run with my Footdrop), TRYING to learn & practice meditation (but only epically failing), journaling, CBD oil and Hemp oil, prayer, SO MANY self-help and workbooks, listening to relaxing sounds or deep theta binaural beats/sound waves, various hobbies (adult coloring books, candle making, etc.), aromatherapy, and so-on. What am I supposed to do about the 'weening so fast off Klonopin' thing? Currently, I am having 3-4 panic attacks per hour, insomnia (up for 77 hours now), random feelings of intense fear and crying, tremors, heart palpitations, high blood pressure and so-on.  I need all the GOOD advice I can get right now, no trolling. Thanks for taking the time to read this and hopefully reply kindly to. I am beginning to have the start of another panic attack again right now as I type this.......
2 Responses
Avatar universal
No trolls here.  Some arguing but no trolling.  The only true answer for you is beyond any of us on here because you have so many health problems going on and there are no medical experts here, but you do have a lot of folks here who have been on medication and tried to stop taking it.  Doing this is a very individual thing -- some people are just lucky and sail through, some just don't.  Because you've tried this before you know the problems.  What you are going through is complicated to deal with and yet you're in a position where you've been given very little time to deal with this.  What you've needed all these years is a do-over -- you were put on this drug for a problem it can't treat and were put on it in a way that guaranteed you would become addicted to it.  I am also addicted to it -- I've been on it for decades and it has never helped and I also was not told at the time the costs of being on a benzo taken every day instead of just when needed.  I've decided to just stay on it because another med already fried me and I don't have the ability anymore in my sixties to recover.  But you are still quite young, and although you have a lot going on, those other things are separate from this thing.  You're going to have to compartmentalize it right now so you can deal with it one thing at a time.  So, although at the time you needed hormonal help, not mental health help, you now report what is a pretty severe mental health problem.  What you need is a psychiatrist who is very experienced with prescribing and dealing with medication for mental health problems, because if you've developed agoraphobia, well, you're put on klonopin for that not taken off of it until you get stabilized enough to get into CBT therapy and hope it works.  Usually antidepressants are used, because they don't wear off -- if they work, they last all day.  I don't know your circumstances, but taking one antidepressant at a time is almost impossible to cause serotonin syndrome.  Perhaps you're the exception, there are always exceptions with these meds, but it might be you're just very sensitive to medication, which is a different thing.  Usually serotonin syndrome happens when more than one drug affecting serotonin is used on a person, or a dose that is well above the recommended dose is used.  Taking klonopin does not affect serotonin levels, it targets a neurotransmitter called GABA.  The shortest recommended taper off any med that affects mental health is 6 weeks, but given the time you've been on klonopin and it's reputation, you probably need more time than that assuming it's even a good idea to come off of it at this point in time, which a psychiatrist might very well decide is not a good idea.  It sounds like you've been working hard, but it also sounds like you've seen a whole lot of the wrong kind of practitioners for a long time.  Nurse practitioners know very little about anything.  They are only trained to deal with the most basic of problems.  Those who work in mental health are usually under the supervision of a psychiatrist, but you don't mention the word psychiatrist, you mention doctor.  General docs do not study or specialize in mental health to any great extent, nor do they have the amount of experience dealing with their downsides as psychiatrists do.  That doesn't mean all general docs are bad at it or all psychiatrist are good at it, that depends on how much a particular doc cares about their patients and learning.  Most humans aren't that great at their jobs, we are just human, and right now you need to see someone who is really good at it.  One place you might look for quick help is a place that specializes in addiction treatment.  Sometimes these places only do cold turkey, so it has to be one that is good and that means expensive.  The best psychiatrists and psychologists if you live in a major urban area might not take insurance, and if you live in an area like that -- I do -- you might have to do that.  Because you don't have to see your psychiatrist very often, it's more affordable to do that than most people think.  It's not like seeing a psychologist every week.  If you have to go to the ER because you live in an area that isn't a major urban area and lacks a lot of practitioners, then you might well consider doing that to get referred to someone who can help you rather than threaten you.  What you're running into is the current wave of prohibition -- they come around every few years -- caused by the opiate situation.  With govts cracking down on addictive drugs, there has been spillover to benzos.  In the long run it's probably not a bad idea to get off this drug, but in the short run, given what you're saying, this doesn't seem the time and if you are going to do it the taper off needs to be done as slowly as you need it to be, not some set standard a doc uses for everyone.  There is no everyone in mental health.  There are a lot of individuals who have brains that react differently.  You need to find that professional who will treat you as you, not as me or anyone else.  In the meantime, you have a really good case of malpractice going on here, and if you have to threaten legal action you have to use the tools you have available to you.  One other thing -- klonopin is always klonopin, there is only one manufacturer of it.  What you're taking is generic clonazepam.  It's probably not the additives that are bothering you, the brand name also has additives that are bad for you, it's more likely that generics are not exactly the same as the name brand, they are not exactly the same from company to company, and some companies have pretty bad reputations for making reliable drugs.  Switching up manufacturers a lot can cause problems. I'm having a bit of this because my CVS has decided to cut costs by not carrying clonazepam, they order it when they need it.  That means if I have any problems with refills, I'm at risk of running out before they get it in.  This will happen more and more so everyone take heed.  The cause is that Walgreens and CVS have bought up almost everyone else out there and they are still not doing well in the stock market because they are not growing earnings anymore.  So they are cutting costs drastically.  Rite Aid is even worse, as what's left of it is almost bankrupt.  This will put more onus on us users to make sure we don't run out and we get what we ask for.  I'm sorry this response is long but you have an urgent situation.  I think you've analyzed it correctly.  I think your docs are committing malpractice.  I think you need to do whatever is required to get through this immediate emergency before worrying about the other stuff, so compartmentalize.  Get all the help you can, even if it means burdening your Mom at a time you don't want to do that.  She will want to help and it will make her feel good to help.  Find a good psychiatrist as soon as you can.  Best of luck.
Avatar universal
I am so sorry you are suffering this way. Like Paxiled, I also take Klonopin and I'm in my sixties. I probably still would have opted for the Klonopin regardless of the difficult withdrawal. It worked, I take .5 mg 2 doses per day. Whenever it has been necessary for me to change docs, the first question I have is" Are you comfortable prescribing long term benzos? " Lucky for me, most are. I, like you would have panic attacks back to back.  There are other drugs for anxiety. Maybe these would help without that serotonin problem. Also gabapentin is used off label for anxiety. Good luck! Wish you could move closer to more docs. It took me a year to cut my Klonopin in half of that helps. I shaved off miniscule pieces until I was where my doc wanted me. I was not rushed!
Thanks so much for sharing your experience.  It's great to have lots of perspectives.  How long have you been taking Klonopin?
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