New member. Feeling very scared and defeated. My story... Please help.

 

    Hi, my name is Michelle and I live in the Fort Worth Texas area.  I was prescribed Klonopin in February of 2007 to both help me sleep and to help alleviate anxieties I was having while trying to get on an anti-depressant.  I started out taking .5mg at night, but eventually worked my way up to 3mg a day in two divided doses over the span of a year. 

 

I was a nursing student on the verge of my senior 1 semester when my old antidepressant pooped out on me and stopped helping my OCD and major depressive disorder. As a result of pursuing a nursing career I know a few things about drugs and how they work in the body-but I wasn't very familiar with this class of drugs because we hadn't covered them yet.  So, I trusted my psychiatrist at the time who prescribed it that it was ok to take it for as long as I was (at that point about four months).  I later changed psychiatrists and it is the one I have now who told me about the long term hazards.

 

My current psychiatrist wanted me to get off the Klonopin-she told me that it wasn't good to take benzos long term because they can cause memory problems-but she insisted that I first get on an anti-depressant. 

 

  Well, after a year had passed and I still had not been able to succesfully get back on an anti-depressant for more than a few weeks at at time (which is a long and frustrating story in itself) I decided that a year was long enough to be on my Klonopin and decided that I would start tapering regardless of whether I had an SSRI on board or not.  I wasn't sure how "long" long term was and I wasn't going to take any chances.

 

    I knew I was on a long acting benzo which makes for a smoother withdrawal, but I never thought about potency as a factor in my tapering.  I also regrettably didn't find the Ashton manual online until things had already gone terribly wrong and I was desperate for answers.  I thought I could manage my own taper.  I should have researched it online FIRST, but I didn't.  AND when I informed my psychiatrist of what I was doing she said I was going slower than recommended, so I felt secure.  I now know I was going too fast. 

 

    So, as I mentioned earlier I started tapering by taking a fourth off of my morning AND evening dose for two weeks at a time.  The first few cuts seemed alright, but as the doses got smaller and smaller by cutting a fourth off of each dose I was decreasing it by a greater value each time I did a new cut.  When I got down to 1mg a day my doctor encouraged me to stay there for a while, but I was determined to get off, so I kept going- continuing to go down by fourths off of each dose every two weeks.  When I got down to .5mg a day I started having nightmares.  After five days of the nightmares not improving I decided that it was just probably something I was going to have to live with as part of withdrawing so I went ahead and stopped taking it.  The dose seemed so small- only .5mg a day-only .25 mg at each dose- but again I wasn't thinking about potency.

 

    The symptoms I got when I stopped taking it completely were terrifying.  The worst part was the nightmares and the change in my perception of time.  Whenever I would finally fall asleep (the insomnia was bad) I would have nightmare after nightmare.  I felt as though I had been sleeping for hours, yet when I awoke it had only been thirty agonizing minutes.  And when I awoke I was terrified and my sense of reality did not set back in for a few hours.  Even while awake time passed eerily slow. I was feeling a strong sense of depersonalization as well which is very frightening.  I was nauseous and extremely weak.  I had the most terrible headache like my head was in a vice.  I put bags of vegetables on my head and pushed them into my aching eyes.  I thought for a second that a blanket on the floor was my neighbors dog.  I felt like I was having an out of body experience.  It is so hard to explain.  My head felt heavy.  I had extreme agoraphobia and during I guess what was a panic attack I couldn't look out the window.  Somehow outside suddenly became scary.  I also had muscle tremors and twitches.

 

  After three days of this terrifying ordeal I went back on .5mg a day with the intent to gradually substitute Valium for Klonopin and go off on a schedule similar to what the Ashton manual recommends.  But after taking five doses and still not feeling well I was concerned.  I was still feeling unable to be left alone or care for myself.  I also was desperate to get the taper process started and get on an anti-depressant as an adjuvant to help the withdrawal process. 

 

So- I checked into one of our local psychiatric hospitals.  I told them how I was feeling and what I needed.  But things didn't go as I hoped.  The doctor switched me directly to Valium instead of substituting it gradually, AND he started me on a lower dose than the Ashton tables say are equivalent.  Then he only kept me at that dose for five dosages, then he cut it in half for a few more dosages, then he cut it in half again and told me to take it for five days and then stop.  And he didn't start my antidepressant slowly either.  He put me on the starting dose and doubled it the next day. (Fluvoxamine)  At my appt. on Thursday he doubled my night dose now. 

 

I feel unable to assert myself in the condition I am in I guess.  I don't know why I didn't say no and show the doctor the taper chart and say I want to do it this way.  I feel so defeated.  And <b>I don't know what to do NOW</b>.  I am pretty sure when I finish with my five Valium at 2mg doses that soon enough I will be going through the same terrifying ordeal than I did when I completely stepped off before because the doctor at the psychiatric hospital has tapered me way too fast. The whole time I was there I couldn't sleep and they just kept giving me more benzos to try and remedy that-Ativan and Restoril.  Nothing helped my insomnia while at the hospital except for Seroquel on my last night there- and I had to request a telephone order for it.

 

Since I left the hospital I can't sleep, the depersonalization is still terrible, and my memory has gone to pot.  My mental sharpness is gone.  I am having trouble remembering things I usually can remember just fine- like if I brushed my teeth or not, what I said to someone and what they said to me verbatim, when certain events happened.  I also just stare off into space a lot and have a hard time responding to people verbally when they ask me a question.  It's like I can't find my words.  It almost seems like locked in syndrome at times.  I am not myself and am terrified that I never will be again.

 

I am so upset at my psychiatrist for not realizing that my newly developed constant suicidal ideations since last October, worsening depression, newly developed agoraphobia, and worsened anxiety were a result of me being on my benzo too long and from me coming off my benzo.  I am also so upset that my old psychiatrist let me take the drug longer than the four weeks max that is recommended.  And I am very frustrated with the doctor at the mental hospital for also not being familiar with the difficulty of this withdrawal and trying to taper me so fast.  The ignorance of this that I have encountered by psychiatrists is astounding.

 

Well, now that you know my story perhaps some of the many people here can encourage me and perhaps help guide me in what I should do now.  <b>Should I try taking the rest of the Valium at this fast taper and see what happens and try to tough it out again, or should I go back to .5mg of Klonopin and start the Ashton Manual taper plan?</b>  I am already feeling terrible.  As I mentioned earlier- my memory and loss of sense of self the most- but also I am getting tremors again and still haven't been able to sleep and the Seroquel isn't helping at the dose I was taking.  I don't want to up that.

 

<b>Please help.  I am so scared.  Feeling this way is terrifying.</b>   :'(

 

-michelle <3

 

 

 

 

 

 

Hi Michelle,

Welcome to Benzo buddies- you have come to the right place.  You can read my story under spring in the welcome forum- like you I had some seriously bad psychiatrists who have put me in the crap!  I get all that you are talking about and I understand how freaky these symptoms are !  Keep repeating to yourself that this is only the drugs and when it is really bad have someone hold your hand if you can - I found this grounded me to reality a bit!  If all else fails I close my eyes.  Distraction can help also- whatever you can manage-reading, tv etc.  The good news is that every symptom comes and goes and I dont get the really nasty ones as often now.  Tine is the only healer, but I was terrible on these meds like you and am now reclaiming my life.  Best of luck - keep hanging in there-it will definitely improve.

Someone else will come by regarding taper - not so sure on this.

Luv spring XX

Hi Michelle, welcome to benzo buddies.

 

I'm sorry about all the stuff you have had to put up with. I don't understand why there are still some psychiatrists that don't get it. I had a wonderful one who actually thought I went to fast my taper!!

 

Ok well for some practical advice. Are you able to get a good supply of either valium or klonopin? Whatever one you decide to taper from, you need to have enough to see you thru. Will your doctor be willing to fill your scripts?

 

I don't think you should continue the rapid valium taper. I"m a little uncertain what dose you are at. 2mg QD? And for how long have you been on this dose? You should at this point, if you were to taper from this dose, be cutting by only .5mg at most every one to weeks. Can you get more? Whether or not you increase this dose and stabilize  depends on how long you have been at this 2mg dose. If it's been more than 2 weeks, it's probably better to just stabilize on your current dose, then begin a sensible taper.

 

Or can you get more klon? If you have plenty of klonopin, or can get more of that, we can help you with a  liquid titration. this entails mixing your crushed benzo with milk or water, enabling you to make much smaller cuts for a smoother taper.  Again, if you have been taking 2mg valium for more than 2 weeks, you could cross back to less than .5mg klon. Maybe .25mg. According to Ashton for the purposes of crossing and tapering, .25mg klonopin equals 5mg valium, so that dose would put you ahead of the game. I think crossing back to .5mg klon would be overkill at this point.

Gosh, I hope I didn't complicate things too much for you. If you can give me some more answers, I can probably simplify it for you.

 

Let us know!

You'll be ok.    

I was thinking, if you can not get any more, worst case scenario, you say you have #5 2mg pills left. If you cut by .5mg, this leaves you with 20 doses. You could cut .5mg every 5 days. This is fairly rapid, but relatively sensible. The only problem with that is you seem totally not stabilized right now.

You would fair much better if you could get a few more.

 

Please note, the above calculation was incorrect. Please ignore, sorry! 

 

  First of all, thank you so much for your quick response to my post.  Everyone on here seems so encouraging, helpful, and truly empathetic.

 

  To answer your question, I am looking at my calendar here, and it looks like I went down to .5mg Klonopin BID on April 25th, 2008.  Then, according to my calender I went down to .375 per dose on May 14th.  I remember having trouble with that dose cut and I believe I went back up to .5mg per dose and kind of jumped around between .5 and .375 for a bit.  Getting tired of having trouble and just wanting to get off of it I then cut it down to .25mg per dose around May 26, 2008.  I stayed on .25 per dose through my evening dose on May 30, 2008.  Then I went the three days without any and had my ordeal May 31st through June 2nd.  In the evening of June 2nd I restarted at .5mg per dose and took five doses which puts me at the morning of when I went to the hospital, June 5th.  On that morning I only had .25mg left in my bottle so I took that.

 

  So, starting on June 5th, a Thursday, in the evening I was not given any more Klonopin by the hospital.  They gave me 2mg Ativan to sleep that night of my admission and I saw the doctor the next morning. He perscribed 5mg twice daily of Valium starting on the night of the 6th and stopping on the morning of the 8th (5 doses).  Then it was decreased to 2mg Valium twice daily on the night of the 8th until I was discharged on the afternoon of the 10th.  On my discharge prescription he cut it in half again and ordered me to take 2mg of Valium nightly before bed.  Then he said from the last 2mg dose on the night of this coming Saturday, the 14th, that I take no more.  He said if I wanted I could take 2mg tab every other day so it lasted until this coming Monday, the 16th.

As you can see, very fast.

 

  I have 14 .5mg tablets of Klonopin left, and 3 2mg tablets of Valium left. (As I took his advice and skipped last nights dose).  I should be able to get more of either drug.  I have an appointment Monday with the doctor that saw me in the hospital.  I am concerned though that he might not be for a slower taper.  I'm scared to assert myself which usually isn't hard for me. 

 

  I hope that helps.  This is so confusing when your brain feels like scrambled eggs.  I would love some advice on a titration taper plan.

 

  I wonder too what effect being put on fluvoxamine is having on this situation.  He put me on 50mg the first night I was there, then increased it THE NEXT DAY to 50mg BID, and then at my appointment on Thursday he upped it to 50mg in the morning and 150mg in the evening.

 

  Either the withdrawal from the Klonopin or the new Fluvoxamine prescription is causing my awful insomnia.  If I do sleep I am not even aware of it and I don't remember any dreams.  I must be sleeping some or I would be hallucinating, right?  When I try to sleep I feel very out of touch with reality.  This morning I had what I believe was an auditory hallucination.  That is the first time that has ever happened.  I don't hear voices or have schizophrenia.  I am guessing it was a hypno-gogic hallucination. 

Whew!

ok, this is my suggestion. You need to get back on a higher dose. It's only been a week. So you either should probably reinstate to .5mg klonopin daily or 10mg valium daily, IMO. From there, you need to stabilize for a bit, then begin a taper.

Since this is the weekend and you are not seeing him til monday, and you have only been off klon for a week, I woud suggest restarting your klon at .25mg BID and stabilizing on that. (you really dont have enough valium to get you thru the weekend, and I don't want you getting any worse.) It might take a week or two to feel better. We will make you a titration schedule, but it won't be available til early next week as Colin will be away over the weekend.

I'll post you a couple of links so you can familiarize yourself with the process and also print it out to take to your doc. I'm not sure how many pills you will need but probably at least a couple of months worth.   

Hey, you are a nurse right? So am I. We have to stand up to these docs! This one sounds like a dip. Don't let him intimidate you. This is your health and your life. But be careful not to P*** him off, lol! A hard balance, I know. 

If he will only give you valium, well, that's ok too. We will work with that, but you need enough to taper off slowly. We usually suggest as 10% cut every week or two, so bring that bit of info to him.

Good luck.    I'lll get the links.   

http://www.benzobuddies.org/buddiesguide/methods

 

 

http://www.benzobuddies.org/forum/index.php?topic=6393.msg61329#msg61329

 

  Thank you eljay and spring for taking the time to make me feel welcome and supported.  

 

  It is sad how we feel so alone and misunderstood in this process when we have doctors.  I often feel like they are not also my advocate as they should be and that I am only advocating for myself.

 

Hey, you are a nurse right? So am I.

 

  No, I wasn't able to finish school.  When my antidepressant stopped working my depression and OCD got really bad and I had to quit nursing school right before starting my senior year.  The plan was to get stable on a new medicine and go back or possibly pursue another degree in the health field.  That never happened though.   I haven't been back to school since my Spring 2006 semester ended.

 

  I was two semesters from my Bachelors degree in nursing.  It is heart-breaking.  I continued to deteriorate, being unable to start a new antidepressant successfully, then I regrettably got on Klonopin hoping it would help.  And now I am dealing with trying to get off this dirty drug and have prolonged my recovery further. 

Hey, you will recover from this and you'll go on to either finish that or pick something new. Besides, if you made it to senior year, you are pretty much a nurse in my eyes. 

 

When people go thru what we all here go thru, it seems to bring out a strength that we didn't know we had. This strength will allow you to accomplish all sorts of things in life. It's hard to see now, but it's true. Keep that in mind.

I was thinking, if you can not get any more, worst case scenario, you say you have #5 2mg pills left. If you cut by .5mg, this leaves you with 20 doses. You could cut .5mg every 5 days.

 

Please note, the above calculation was incorrect. Please ignore, sorry!   

 

Just wanted to welcome you and to reassure you that all the symptoms you describe are classic benzo tolerance and withdrawal syndrome. You are not going crazy, you are not permanently brain damaged, all your faculties are intact and simply dulled by the physiological symptomology of this completely normal reaction to benzodiazepines.  You will get back your memory, cognitive skills, attention span, and sense of humor, and you will be you again some day, once you get off these monsters and heal. I am 53 years old, and my brain feels better than it did 20 years ago when I started this nightmarish journey. I hope you find that encouraging.  :thumbsup:

 

Tony

 

  Eljay,

 

      yeah I saw that, even with my benzo brain. 

 

    Tony, 

 

        Thank you for your encouraging words.  It is just so hard to believe when you are at the bottom of the hole and feeling these things.  Having OCD makes this experience even worse because I obsessively worry about any symptoms that I have and if they are more severe than they should be, and I am constantly analyzing why I am having them and how I can make it better, and I am definitely catastrophising.

 

        When you say you were poly-drugged what do you mean?  Were you on several drugs at the same time or were you trying several drugs unsuccessfully over a period of time?  I have done the latter.  For 2 and a half years I have been trying to get on an anti-depressant again.  I try one and manage to stay on it anywhere from a day to a week or two, depending on how bad the side effects are.  So over these 2.5 years I have tried all the anti-depressants more than once.  I've even tried Lamictal, Seroquel, Invega, and Provigil.

 

        I worry if I have damaged my brain from this going on and off of drugs for so long and so quickly after one another.  I am sure my brain is severely confused as to what the heck is going on.  The longest I have gone without trying <i>something</i> is one month.  I wonder if I should give my brain several months to just heal and not be on anything and see where I am.  I think the Ashton manual says to wait 6 months to re-evaluate after stopping the benzos.  My problem is that I haven't been able to function with my OCD since my old SSRI pooped out on me.

 

        I just don't know.    I am so tired of waiting for my life to begin again.  After 2.5 years everyday is agony as the minutes pass.

 

   Eljay,

 

       yeah I saw that, even with my benzo brain. 

 

Not sure where that came from and it doesn't happen often, lol! I woke up at 3am and it hit me! 

I don't know what to say, but I had to say something. I have been through the same as you and I can understand how you feel. Know that people are here for you whatever you are going through. Best wishes

    Tony, 

 

        Thank you for your encouraging words.  It is just so hard to believe when you are at the bottom of the hole and feeling these things.  Having OCD makes this experience even worse because I obsessively worry about any symptoms that I have and if they are more severe than they should be, and I am constantly analyzing why I am having them and how I can make it better, and I am definitely catastrophising.

 

Personally I doubt if it's OCD. I and so many others were exactly the same, and we never had OCD. I can totally relate to everything you say here.

 

         When you say you were poly-drugged what do you mean?  Were you on several drugs at the same time or were you trying several drugs unsuccessfully over a period of time?  I have done the latter.  For 2 and a half years I have been trying to get on an anti-depressant again.  I try one and manage to stay on it anywhere from a day to a week or two, depending on how bad the side effects are.  So over these 2.5 years I have tried all the anti-depressants more than once.  I've even tried Lamictal, Seroquel, Invega, and Provigil.

 

I was on benzos, maois, various anti psychotics, various anti convulsants, various mood stabilizers, and ended up even having Electro Convulsive "Therapy". The list of drugs I was on was long, many at a time, and changing every time I went into another round of benzo withdrawal (recurrence of GAD or whatever the doctor was thinking - but it was benzo withdrawal).

 

         I worry if I have damaged my brain from this going on and off of drugs for so long and so quickly after one another.  I am sure my brain is severely confused as to what the heck is going on.  The longest I have gone without trying <i>something</i> is one month.  I wonder if I should give my brain several months to just heal and not be on anything and see where I am.

 

No you haven't damaged your brain. You are brain-fogged by, in my opinion, the benzo poisoning. All the other drugs add to your confusion as they did to mine. I was convinced that I was permanently brain damaged, yet here I am today repeatedly being surprised and amazed at the complex tasks requiring memory that I am now able to perform without stressing out. You can get there too. My guess is you probably can stop experimenting with all the other drugs because they are simply being used to treat the symptoms, whereas the cause, at least in my case, was all benzos. I had to get off the other drugs and taper slowly off benzos before I felt better. Yes, I am on some anti depressant meds, but in my experience I find they help me and do not cause the mental confusion that benzos did.

 

  I think the Ashton manual says to wait 6 months to re-evaluate after stopping the benzos.  My problem is that I haven't been able to function with my OCD since my old SSRI pooped out on me.

 

        I just don't know.    I am so tired of waiting for my life to begin again.  After 2.5 years everyday is agony as the minutes pass.

 

I understand. I've been there, I really do get it. Honest!

 

Tony

 

    Thanks Tony for your thoughtful reply.   

 

Yes, I too was still very sharp while on my anti-depressant Celexa for almost five years.  After it pooped out and I hadn't been able to get on another one almost a year later though that is when I tried Klonopin hoping maybe it would help me get on a new med and that it would ease my anxiety which was through the roof.

 

I don't know what to think about the one I was put on at the hospital, Fluvoxamine.  I can't gauge what it is doing because I can't tease apart what is related to me withdrawing off the benzo and what is a side effect of the fluvoxamine.  The hospital doctor upped it so fast too which I am concerned about.  He also put me on Wellbutrin.

 

I am 100% positive I have OCD unfortunately.  Mine manifests itself in mental obsessions, where I ruminate and worry about things, often irrationally, constantly.  Its like a broken record in my head of 100's of worries.  A lot of people don't know about the other ways people can have OCD.  They only know about the stereotype, like Monk.

 

    Desperate in Denver,

 

            Thank you for your support.  This is the hardest thing I have ever had to do.  I read your story and I know you are having a hard time too.  Is it getting any better as the days progress?  I know each day feels agonizingly slow.  Best wishes to you too. 

Critter

 

All the burning has stopped. I still am dizzy and my right eye and the right side of my head hurt a lot. I have trouble organizing my thoughts and the depression is fierce. I didn't sleep a whole night until I started tylenol pm and am trying to cut that too. I have been on 15 drugs in the last two years trying to fix this and now I am somewhat resolved to time healing it. Today I biked about a mile and the depersonalization freaks me out but I do it anyway because I have to have activity and get strong for when this clears. The odd thing is I can't organize things because my thoughts aren't organized and I am smart which is good and bad. The ocd, let me tell you, I was afraid I would hurt someone I was so enraged and I have learned that who you are underneath all this is still there. You are not a crazy nut. I force myself not to think of symptoms, because they are there and I can't do much about them. You are in the window of reinstatement which may make things easier for you. Either way it seems that all get better. One guy I read about tapered 24 mgs of ativan in one month. OY. and two years later he is completely recovered. This is what must be focused on. So stay as strong as you can. I have an awesome counselor that knows not much can be covered with this extreme condition, but I can vent. Please keep me informed as I care immensely about your progress.

I am 100% positive I have OCD unfortunately.  Mine manifests itself in mental obsessions, where I ruminate and worry about things, often irrationally, constantly.  Its like a broken record in my head of 100's of worries.  A lot of people don't know about the other ways people can have OCD.  They only know about the stereotype, like Monk.

 

Well, you should be aware of the fact that benzo withdrawals manifest the same behavior. So I suspect it would amplify it in you.

I can tell your like me, you have to go through this with someone and have someone know what your going through - it's going to be alright. Your autonomic nervous system has been turned off and it comes back on like a light switch, I've been told, and the issues it was supposedly treating hit in extreme. I am a recovered eating disorder person and I eat constantly ( go figure ) to try to pacify the metal taste in my mouth and I still can't put weight on. Ironically, I would love to be fat and happy and my body is doing it's own sort of healing thing. My counselor said you are in control of some things so she makes me say STOP really loud when I start obsessing about every symptom - of course this can hurt your head because your not feeling real great - so I say it softly. It made me stop thinking all this was happening because I was being punished for something. I've been called a hypochondriac - I say, ya you would be too after going through all this. People don't get it.  But the stopping thing does help. This is a concerning issue, but realistically - you are healing. When I get really scared I say I am getting better, over and over if I have to. You can do this - your stronger than you realize and I understand what your going through. Big hug - we'll get through this - it's going to be alright.

cc,

 

please let us know if your doc will refill you for your taper, and which med.

 

      I am going to try and not take anymore and see what happens.  My last dose of the 2mg Valium was last night.  I was thinking that 2mg of Valium is the equivalent of less than .125mg of Klonopin which I hope can be considered small, right?  So I am hoping since I haven't gotten really sick like last time that maybe it will be alright.  I don't feel well right now as you know, but it is not as bad as when I stepped off all the way last time- of course I am not all the way off until the last Valium clears my system. 

 

      So, I am worried.    I know Valium has a longer half life and will take longer to clear from my system so I am scared that it is lurking around the corner days from now and I will go through the nightmare I went through earlier this month.

 

      I see you were taking Seroquel after you finished your taper.  Was this to help you sleep from the withdrawal insomnia?  If so, how much did you take at night?

CC,

It's not that 2mg is dangerous to jump from, as far as seizures go. You should be ok with that. But the thing is, you have done such a rapid taper. It may still be catching up with you.

But then again, maybe not. And the advantage of valium is that it does leave your system at a slow rate. In other words, it's as if you are still tapering even after you have had your last dose

Did you see your doc today? I'm assuming he didn't refill you?

 

By the time I had jumped off my last dose of benzo, I was finishing up my seroquel taper. at that point it wasn't really helping with sleep. That said, once I jumped from that, it worked better when I did take it prn. 

I originally took 100mg  and tapered to 25mg and off. When I took it prn, I took 25 to 50mg.

It was originally prescribed along with the klon for intractable insomnia. But now i sleep with nothing.