aarniek
@aarniek
@aarniek
Posts: 65
Joined: Oct 30, 2016
Protracted Benzo withdrawal
Taken of 8mg of Ativan daily in 3 weeks and suffering terribly nearly 4 years now! Unable to walk ,have insane muscle tightness,no memory,tinnius is unbearable,unable to picture things in my mind ! After 45 months it’s worse than ever and 2 neurologists have tried only medications which all made me even worse!
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thankful
@thankful
@thankful
Posts: 345
Joined: Apr 27, 2016
@num1boxer1919 – For many years I accepted the diagnosis that I had a debilitating anxiety disorder and would likely need to be on medication forever. It was an easy diagnosis to accept because I felt so unwell. Exhausted, sweating and shaky, poor sleep. It never occurred to me that my constant state of
dis-ease was caused by the medication I was taking (Xanax, in my case). I finally started having such bad anxiety that I knew the medication was no longer working. But I was also physically dependent on it. What a lousy situation!!! My doctor wasn't terribly supportive of me discontinuing the Xanax. "Do you want to become housebound?" was one demoralizing quote I remember. Also, "this class of medication is almost impossible to discontinue." Geez, that's a helluva thing to mention after 13 years. And as if to prove her point (albeit not intentionally cruel) she put me on a waaaaaay too fast titration schedule. I almost agreed with her that, yes, this was too difficult. But I'm stubborn. I found the Ashton Manual's suggested titration schedule which recommended switching to a benzodiazepine that has a much longer half-life (Valium), stabilizing on that, then SLOWLY reducing the amount every two weeks. I switched from Xanax .5mg 3x a day to Valium 10mg 3x a day. I reduced by 2.5mgs every two weeks (easy to do by splitting a 5mg tablet). When I reached 10mg per day, I slowed the reduction to 1mg every two weeks. I am now at 1mg of Valium per day for three more days, then done! I don't expect any withdrawals from such a low dose. The whole titration process was more comfortable than being on my previous full prescription of Xanax. As in, no withdrawal symptoms to speak of. I used other means of help by way of diaphragmatic breaking, relaxation tapes, good sleep hygiene, etc. But it was the Ashton titration that made it painless. Best of luck!
@elsa1000– So…. happy for you! You did it right and you did the hard…. work! Very good model for others to listen too and heed your wisdom. Thank you for sharing your story!
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num1boxer1919
@num1boxer1919
@num1boxer1919
Posts: 21
Joined: Jan 31, 2019
Just to give you an idea of equivalencies: https://www.benzo.org.uk/bzequiv.htm So if you take 1mg klonopin twice a day, the diazepam (Valium) equivalent would be 20mg twice a day. You can then reduce by 2mg (or I did 2.5mg) every two weeks. If you stay with klonopin and reduce by .25mg, you'll be reducing exactly twice as fast as I did. IMHO, this is an unnecessarily traumatic route. Initially, I tried to discontinue directly from Xanax. Holy cow, what a mistake! Not only did I keel-haul my nervous system, but I failed as well. The benefit of valium/diazepam is that it has a long half-life, meaning it leaves your system very, very slowly. So there is no "between-dose" withdrawal. Post-acute withdrawal syndrome (PAWS) is something you want to avoid. I think it can be avoided if you are careful and gentle with yourself.
Thank you to much for your input.. So once I get off of it my sleep will eventual get back to normal after time? I know you've probably not been on Seroquel I'm only on a low dose just for the antihistamine effect so it can help me sleep, do you think I should come off the Klonopin first? I just wanna make sure I do it right & the safest way.. I think I may try to talk to my pharmacist because they know medications pretty well just to see if they can give me a little bit of input on the whole thing cause I sure a lot of them now almost as much or more than a doctor does on medications & what they can do..
num1boxer1919
@num1boxer1919
@num1boxer1919
Posts: 21
Joined: Jan 31, 2019
Life does get better and my sleep is finally returning to normal. My withdrawal was last march I didnt realize I did it too fast but was only on .50 klonopin at night then, but for 14 years. My body felt like I was shaking all the time but it wasn't visible to anyone but me, anxiety was bad, and couldn't sleep and my vision seemed distorted. My worst issues were my mind was in a major fog all the time and my memory was so bad I thought I had Alzheimer's. It was almost 7 months for the fog to finally start to lift. I tried CBD oil to help with sleep and it helped some. Beware of adding any meds in withdrawal, my depression got so bad my dr added another antidepressant to my normal meds. All my fog and memory issues came back worse then before so I got off that med after 3 weeks and took another month to get back to where I was before it. About 3 weeks ago I realized I was feeling as close to normal as I had for years! What a relief all from a small does of such a horrible benzodiazepine!! They say to stay positive but I found that wasn't easy. I wish you all the luck because it can and does get better. I wish the drs would stop prescribing these meds for such an extended time and explain what they can do to you.
Thanks so much for the response.. & I'm am right there with you on doctors prescribing these meds long-term it should never happen & at least give someone a little knowledge about them & what they can do to you long-term.. Hopefully they crack down on doctors a little more because this drug can ruin peoples lives.. Like I said in the beginning I was very young & had no idea what I was even taking the doctor just told me take this you'll feel better & just kept prescribing it & when I started feeling really bad they just said it's your anxiety, if I was more outspoken I woulda been like heck no this ain't my anxiety this is on a whole other level from anxiety lol.. Its crazy.. Maybe for everyone this doesn't happen as much, but everyone is different, it's been torture for me in the long-term thats for sure.. I just wish the doctors could've said take this only if I have an anxiety-attack but for nothing else.. If that was the case my life would be in a different place right now I'd probably be married with kids & a family & living life to the fullest but I guess everyone goes through adversity at some point in there life this has just been a very long adversity lol.. There's no way any woman could put up with me right now I cant even put up with myself lol…. & yeah my memory is getting so bad from lack of sleep its horrible.. So pretty much it usually takes around a year to starting feeling more normal again after getting off of it?
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elsa1000
@elsa1000
@elsa1000
Posts: 22
Joined: Dec 26, 2018
Thank you to much for your input.. So once I get off of it my sleep will eventual get back to normal after time? I know you've probably not been on Seroquel I'm only on a low dose just for the antihistamine effect so it can help me sleep, do you think I should come off the Klonopin first? I just wanna make sure I do it right & the safest way.. I think I may try to talk to my pharmacist because they know medications pretty well just to see if they can give me a little bit of input on the whole thing cause I sure a lot of them now almost as much or more than a doctor does on medications & what they can do..
The quantity and quality of my sleep has improved markedly as the level of diazepam in my system has decreased. In hindsight, I can say that the benzos had been negatively effecting my sleep for many, many years. It really is appalling. But I had been convinced that all my symptoms were a manifestation of a disorder.
You're correct, I have not taken Seroquel. My understanding is that it is an atypical antipsychotic developed to treat schizophrenia and bipolar disorder. It is not a sleeping aid. It is a powerful psychotropic drug that has sedating properties as a side-effect. It's off-label use for insomnia is controversial. Do I remember you saying it made your heart race?
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num1boxer1919
@num1boxer1919
@num1boxer1919
Posts: 21
Joined: Jan 31, 2019
The quantity and quality of my sleep has improved markedly as the level of diazepam in my system has decreased. In hindsight, I can say that the benzos had been negatively effecting my sleep for many, many years. It really is appalling. But I had been convinced that all my symptoms were a manifestation of a disorder.
You're correct, I have not taken Seroquel. My understanding is that it is an atypical antipsychotic developed to treat schizophrenia and bipolar disorder. It is not a sleeping aid. It is a powerful psychotropic drug that has sedating properties as a side-effect. It's off-label use for insomnia is controversial. Do I remember you saying it made your heart race?
That's good to know.. Its just unbelievably hard to come off Klonopin.. Because when I decrease my dose just a little the relaxing effect is decreased which makes it even tougher to sleep.. & Yes the seroquel stimulates my heart for some reason which makes it race for about 2 or 3 hrs right after I take it & makes me kinda feel like I'm gonna pass out it's crazy sometimes it's worse than others.. That's really the only side effect I have from the medication the sedation part works pretty well most of the time tho.. I just wonder if there's anything different that I could take that doesn't have that effect Dude effect to it I use to take vistaril for sleep for about 5yrs before the doctors put me on Seroquel & I never remember any side effects from that but my doctor is saying now I shouldn't go back to that because it causes racing heart beats I'm confused lol just wish I knew what to do.. & like I said I don't believe I woulda had any sleeping issues at all if I wouldn't have started on any meds long-term it's switched something in my brain & now my brain won't shut off while I sleep it's terrible.. The seroquel helps me get to sleep but once I get to sleep im waking up all night it Just doesn't make any sense..
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creatineboy
@creatineboy
@creatineboy
Posts: 2
Joined: Feb 13, 2019
Sometimes we read to much and sometimes what we read is exaggerated. Remember there’s all kinds of people on these boards and and they have mental problems that are worse than ours. Are you sure there isn’t something else that is wrong with you? Maybe it’s another drug you are taking. I really can’t say, I feel bad for you and hope your problems resolve themselves soon. Take care.
No, it's not another drug he's taken. There is no exaggerating to it; protracted benzo withdrawal can affect many people for years after they quit taking them. The benzodiazepines actually rewire your neurons and it can take a long time to get it back to normal. It's science now that we know the withdrawal can take years, or rather,the reconstruction of your brain. Flumazenil can help supposedly.
Protracted withdrawal is no exaggeration,it's accepted as a very horrible thing.
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creatineboy
@creatineboy
@creatineboy
Posts: 2
Joined: Feb 13, 2019
Believe me,I understand. It i stuff. ,whatever form it takes,all that. I recently stopped klonipin after about 10years. I know you are leery of taking other meds, but so far I've tried neurontin and lopressor to help, and Robaxin for the muscle tightness,it really works.
I use a noise maker and an air purifier for background noise.
They say there's a reversal drug called Flumazenil, it is an antibenzo benzo. Returns your chemistry in your brain to right,but it has to be done in a hospital by titrated IV.
Hope you're doing well
brit
@brit
@brit
Posts: 188
Joined: Jan 28, 2017
Thank you so much for the advise. Mentel illness is a really terrible thing and so hard to deal with……it takes all your strength always and hoping you are feeling better. The strength comes from the MAN UP STAIRS and I pray to home daily. Hope you are having a Happy Valentine Day Patti
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Merry, Volunteer Mentor
@merpreb
@merpreb
Posts: 4697
Joined: Feb 07, 2018
Thank you so much for the advise. Mentel illness is a really terrible thing and so hard to deal with……it takes all your strength always and hoping you are feeling better. The strength comes from the MAN UP STAIRS and I pray to home daily. Hope you are having a Happy Valentine Day Patti
@brit– I think that there are more people who have "mental illnesses" than not. Today's world is not a happy one and we have to consider that! Morale is low, people can't afford medicines or treatments. Who wouldn't be upset. I think that it is wonderful that you believe in a higher power, but it's you who has the inner strength @brit, not anyone or thing. Either it's you who will make yourself get well or not.
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Parus
@parus
@parus
Posts: 2466
Joined: Jul 14, 2017
@brit– I think that there are more people who have "mental illnesses" than not. Today's world is not a happy one and we have to consider that! Morale is low, people can't afford medicines or treatments. Who wouldn't be upset. I think that it is wonderful that you believe in a higher power, but it's you who has the inner strength @brit, not anyone or thing. Either it's you who will make yourself get well or not.
@brit I do not believe we are to just remain idle and allow a higher being to fix things. If we do not take action within ourselves nothing will happen. We all gain strength in different ways. We all have the choice to believe as we choose. To preach at others can sound critical. I think @hopeful33250 has a thread on spirituality which may be helpful to you. I am in no way being critical of your beliefs. This can be a sensitive subject for some and hurtful as well. It can be difficult for some. Happy Valentines Day.
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brit
@brit
@brit
Posts: 188
Joined: Jan 28, 2017
I agree with everything you said. It is so hard to "help yourself" sometimes. i am just too tired of feeling this way. My doctor is very understanding and tries to do all he can but so far it hasn't worked. Just pray to the "Father" for help and try very hard for myself but nothing seems to work. Thank you for your caring and God Bless Patti
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Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 9940
Joined: Mar 28, 2016
Hello @brit,
As I am a person of faith and believe in God, I realize that what @parus and @merpreb have posted has a ring of truth. Sometimes people of faith can begin to rely on magical thinking that all will be fine if they just believe. However, as people of faith we are urged to seek out wisdom and to actively involve ourselves in our own well-being.
As an example of this, I have an elderly relative who in her early 50's discovered a lump in her breast. She decided not to follow the doctor's suggestions for a mammogram, biopsy, etc. and instead prayed and went to visit healers that she saw on TV. After 10 years of that kind of behavior the lump got so big that she could no longer lift her arm to put on her winter coat. So, she decided to do things the doctor's way and eventually had chemo, a mastectomy and radiation.
I realize that we all approach God and faith in a way that we have learned so the following sentence is only my opinion: As a person of faith, I believe that God asks me to look to Him for wisdom but also to use the wisdom he has provided to medical science in order to be healthy and strong.
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Ginger, Volunteer Mentor
@gingerw
@gingerw
Posts: 2970
Joined: Jul 26, 2018
Hello @brit,
As I am a person of faith and believe in God, I realize that what @parus and @merpreb have posted has a ring of truth. Sometimes people of faith can begin to rely on magical thinking that all will be fine if they just believe. However, as people of faith we are urged to seek out wisdom and to actively involve ourselves in our own well-being.
As an example of this, I have an elderly relative who in her early 50's discovered a lump in her breast. She decided not to follow the doctor's suggestions for a mammogram, biopsy, etc. and instead prayed and went to visit healers that she saw on TV. After 10 years of that kind of behavior the lump got so big that she could no longer lift her arm to put on her winter coat. So, she decided to do things the doctor's way and eventually had chemo, a mastectomy and radiation.
I realize that we all approach God and faith in a way that we have learned so the following sentence is only my opinion: As a person of faith, I believe that God asks me to look to Him for wisdom but also to use the wisdom he has provided to medical science in order to be healthy and strong.
@hopeful33250 Very nicely said……
Ginger
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@beckysn
I was also already taking an antidepressant and mood stabilizer plus vyvanse for attention D.D. when I weaned off the knonopin. So sorry a antidepressant didn't help it was trying to add another antidepressant that made my symptoms worse. Sorry wish there was a easy fix.