Carem is home! - Success after long term יuse of Klonopin and Zopiclone

 

 

This is my story-

Back in 2009 I was prescribed 2.5 Klonopin and 7.5 Zopiclone during a difficult time in my life. It was not a very big crisis and I am sure that if I had not received these medications it would have been over in a few months. Yet I did receive the medication and it changed the course of my life. 

 

Like many  others  I asked the prescribing doctor if these medications were not addictive and was assured they were safe. ( I later learned that this is a very high and unusual dose to begin treatment with). I began to try to get off the K in 2010 and found it to be incredibly difficult. After many searches found benzobuddies and the Ashton manual and after several failed attempts to crossover to valium decided to do a direct micro tapper off the K. I Began my micro tapper in 2011, at the beginning I just eyeballed my cuts  and then as I progressed I got a scale and tried to be systematic in cutting.  I did mostly a symptom based tapper and went slowly,  Very slowly...I held for a full year during my daughter's senior year in high school

 

Throughout my tapper my worst sx were: anxiety, horrible cog fog, cognitive problems, brain pressure and at several points depression. I also had sound sensitivity and very sore back.. At the worst period I was also having suicidal ideation. I wasn’t going to act on it but though about it a lot. I now believe its just our brain signaling to us that this is too much... Towards the end of my tapper I had something I could only describe as brain crash. At some point during the day my brain would shut off and I would desperately need to stop everything and rest. It was accompanied by horrible brain pressure and many times felt unbearable.

 

For so many years I wasn’t me. I had a difficult time thinking and articulating my thoughts, my creativity was all gone, I lost my self-confidence. Most of all I was numb and stressed and unhappy.

 

Over the years I met with at least 10 different psychiatrists and neurologists with the hope of getting some professional help. Most of them were totally ignorant about benzos and I found the interaction with almost all of  them extremely frustrating and humiliating.  Towards the end of my tapper I was sent to have a spect scan (it is a functional brain image that does not show permanent brain damage but the state of the brain at a given moment). The results of the scan were horrifying and showed that my brain looked like the brain of an alcoholic! ( and  I never drink even wine! It’s the benzos having a similar effect to alcohol ) This was the lowest point of my journey at which I was sure I had permanent brain damage and would never fully recover. I am still not sure if it made any sense to do the spect as it did not lead to any change in my treatment. Yet there was some comfort in being able to have a medical test that could validate my experience and feelings at the time.

 

In 2015 I finished my K tapper. My anxiety decreased immediately!  For me this was a revelation. Could it be that all these years the anxiety was caused by the drug? I have learned to live with chronic anxiety for so many years and it was such a dominant element in my life!  The anxiety never returned. Yes – I do worry sometimes and get a bit anxious- but that just me.. the way I have always been.

I then tapered the zopiclone for several months and was fully off all the drugs in November 2016. As I was getting  off the zopiclone my brain fog started to lift! I stopped having the horrible brain pressures. Gradually I felt that I could read and write and think. My creativity came back!  It took me a long time to trust this change and believe in my abilities again.

After tapering the z drug I had a very difficult time sleeping and went through sleep restriction therapy which really helped. All through my tapper I could never nap as I could not fall asleep without the medication.  My sleep is still far from perfect but it is ok and I love my afternoon naps:)

 

When I was prescribed the medication, I was a happy healthy and very successful woman with an incredible career. During my tapper I had to quit my job as I could not function and kept a part time job with tremendous efforts.

 

Looking back at all the years on medications I feel that the medication took my soul. For seven years I hardly felt alive.

I am now a bit more then a year off all the drugs and amazingly I feel healed. I am happier then I have been in years.  I am resuming my career and am getting new and exciting opportunities. the difficult days seem almost unreal. I am totally me again- happy and optimistic and creative and full of energy and initiative.  I feel so very grateful to have my life back.  I try not to take the everyday joys for granted and to stop and appreciate life from time to time.

 

Am I 100 %? No- I still have some lingering issues. I get very tired in the afternoon and must sleep for at least a half an hour. I Cannot get though the day without the nap. I just fall asleep .. It seems that my brain still gets tired. I think well but cannot work many hours. I am extremely sensitive to any sedatives even to local anesthesia.  I am extremely cautions and never ever drink alcohol or even take vaccinations. I believe that for many years I will be fearful of the sx returning.

 

To celebrate my return to life I donated this year to the benzodiazepine coalition – an amazing organization working to mobilize change in this area.I would like to encourage every person who is writing a success story to make a small donation to a benzo cause.  It is the very least that can be done to give back to this amazing community which has literally saved our lives. I am devoting all my energy now to regaining my life and my career, but I hope so much that one day I will have the strength and the courage to do some policy work in this area.

 

During my tapper and especially towards the end of it I was fully convinced that I had permanent brain damage. My cognitive functions were very poor for a very long time and I was sure I would never regain my full abilities.  I enjoy my regained cognitive abilities so much. Sometimes I just stop and smile and think to myself- it so nice to have a brain! 

 

What are my lessons?  what helped?

I am not sure. Seeing the great improvement once I was off all the drugs I tend to think that I did go too slow and that real healing happens once we are off all the drugs. On the other hand, the fact that I am doing so well may support a slow tapper…

I did take some supplements including- curcumin and vitamin b and omega 3 and several others. I believe it helped.  If you are interested in the full list let me know.

I also went through CBT treatment. It was difficult as I now know how much my anxiety was induced by the drugs. But it really helped me not to act on my anxiety and save my relationships.

 

I lost so much but I did gain a few things from this horrible process:

I believe that I am  more compassionate to others suffering – no matter what their problems are

I think that I do have more perspective on life and am more able to focus on what matters

 

Last and not least- I want to thank Those who supported me throughout this process

A few friends and mainly  my husband and my sister.  I could not have done this without your endless support. 

I would like to thank this website so much and especially my friends on the K club. who are mostly recovered and don’t post here anymore,  for being here for me. I truly cannot imagine how I would have done this without you. I spent so many hours reading here. Made my journey significantly less lonely.

 

To all of you who are reading this and are now in the process of tapering- I just wish I knew how well I would feel now when I was suffering.  Like many of you I truly though that I was the one with permanent brain damage. I am so well now and you have every reason to believe you will be too. I hope so much that my story can give you hope

 

English is not my first language but it is good enough and it allowed my to be part of this forum for many years. I still apologize for my  English.

 

Lots and lots and lots  of love to all of you.

Carem

 

 

 

 

 

HAPPY HOMECOMING, CAREM! (Love the picture on your profile...) Huge congratulations on your success, and thank you so much for spreading some hope today.

 

I'm about two-thirds through a slow Ativan micro-taper (after hellish years in tolerance) and having many of the symptoms you describe, with anxiety being the absolute worst. Definitely feeling more hopeful now. It is so inspiring to read of how you're getting yourself back. I cannot tell you how much that means to me.

 

I would be most grateful if you could post your full list of supplements. Thank you!

 

Enjoy every moment of your beautiful, healthy new life.

 

Warmly,

Lara

Dear Carmen

your journy to recovery inspired me !!!

God bless you,

 

 

Right now I’m 14 months bezno-free (I have been taking 0,5 mg Rivotril for 9 years). And 7 months Citalopram (5 mg daily for 8 years).

 

I’ve been suffering with the following symptoms for 2 weeks now:

 

- Extreme bloating, gas

- Accid reflux

- Stomach pain/cramps

- Rectal pain (makes me wake up at night)

- Weightloss 3 kg

- Abnormal feces (change of form)

- Prostate pain

 

a large part of my suffering and symptoms are gone and I find myself on the right path to recovery road. a Road less traveled

 

 

I want to make an appointment for a check-up (colonoscopy).

 

Are these symptoms normal and part of the withdrawal?

 

Greetings,

Mehdi

Congratulations, Carem!

 

It's a wonderful story, and well-written too, so there's no need to apologize for your English! Thanks so much for sharing your story here. I'm sure you know how vital it is for the rest of us to know that people do, indeed, heal from all of this, and your story proves that yet again.

 

I wish you all the best! Enjoy your life!

Congratulations Carem!

What a beautiful story and it was so nice to wake up after the terrible night and read your story.Giving me some hope.  20.5 months out and still feel my brain damaged for life.

Hoping when I come off remeron more healing will start to happen.

Yes I would like to know too what kind of supplements you were taking. If you don't mind would you tell us?

Have a wonderful life enjoy every moment!

Thank you for coming back and tell us your story!

Love and healing

Vica

Congratulations on a very inspiring and well-written story, Carem!

Thanks a lot for sharing it. You are a very wise and strong person!

I wish you a happy and healthy lofe and a successful career further!

Much appreciation,

Fallingstar

Thanks everyone for your wonderful replies  and for the compliments on my English

Acutally my English improved during tapper because I spent so much time on this forum!!!

The mix of brain fog and English made posting so difficult during tapper  and now look at my long success story:) 

 

Here is what I took

Curcumin- for a while 4 a day! I believe this really helps😊

Super Q10

Magnesium

B complex

Vitamin D – because I had deficiency

Omega 3

Folic acid

Probiotics

I consulted with a Dr who seemed to know what he was talking about. He strongly stressed the B complex and as I progressed the rest of supplements with stress on curcumin.

He also recommended that I eat lots of big sea fish. I did

Don’t hesitate to ask anything. I don’t think I have any clear answers but I am happy to share my experience

Hugs

C

 

Carem,

Your story is mine as well.  I am tapering off of 10 yrs of Klonopin and now Remeron  to help with sleep and Tramadol for the horrible pain.  Unbeknownst to me or any physician the Klonopin is the cause of the pain and sleep problem.  Finding BB I found the truth.

I have a daughter who is graduating from high school this year.  I have missed most of her school years from Klonopin.  Though I was only r/xed 1 mg and didnt always take that much I have been in a very painful, emotionless stupor this entire time.

I pray every day to get off this evil drug and live life again. I pray the years that I missed will be restored esp to my daughter to whom I was daily  struggling to be there for.

Thank-you for sharing hope.

Hoping to be off,

Somedaysoon

I fully understand the difficulties of being a mom in wd. It was my biggest challenge!

Sending you lots of love and much hope

Carem

 

CONGRATULATIONS, CAREM!!!!!! What a journey!!!!! I just don't understand how the very people we go to for help can be so ignorant of something like this. Very, very sad. Yet you persevered throughout it all. Your message brings hope to so many. ENJOY every aspect of your life. You deserve so much!!! 

THANKS!!!

:smitten: :smitten:

What an inspiring story!  Thank you for posting it for those who need hope, encouragement and reassurance.

Challis 

Congratulations Carem,

Your post is very inspiring and gives a lot of hope for me and others who are still in the withdrawal and recovery process!

Enjoy your new found life that you well deserved!

 

Blessings!

Pi

 

 

 

Wow, a wonderfully written account of your journey. It brought tears to my eyes. I am so happy for you.

 

Wish you all the best.   

Congrats! I too am on 2.5 mg's of Klonopin and about to begin a long microtaper after several failed taper attempts and failed Valium crossovers. I am terrified and every day is a nightmare but I am trying very hard to focus on stories like yours that tell me that eventually I will beat this and I will get my lucid mind and healthy body back. Thank you for taking the time to inspire those of us who are still in the thick of this nightmare.

 

That's crazy that the damage showed up on a scan, I've never heard that before. How can doctors deny the damage these drugs do if they show up on brain scans?

Carem, thank you for taking the time to reply!

 

All the very best to you,

Lara

Actually, I'm quite interested in that test -- the SPECT -- since I read about it awhile back. I believe it can look at GABA receptors, but I wasn't sure which doctors order that test and under what circumstances. Carem, who ordered it for you? What did they say about your results? How did they explain what they saw? And what did they suggest? Was there a follow-up test?

 

Obviously, you healed well, so even though the results looked scary at the time, your brain seems to have done exactly what it needed to do. Such great news!

Carem……… out of curiosity I was wondering if you’ve had another brain scan now that your off that would show a difference?

 

Thank you for sharing story!

As for a Spect scan- I am enclosing an explanation by Ashton as to why this as well as functional MRI may be the tools that can allow us  to detect the effect of benzo on the brain.

 

Yet- I must stress two things. The first is that most mainstream  neurologist don’t "believe" in this scan and see it as controversial. The second is that as my story shows it does not predict the future. I still think that it may be used to understand what is going on in one's brain and perhaps as Ashton suggested be a basis for future research. It is amazing that you can see our suffering in a scan. Perhaps It may also assist in future law suits (There is a more accurate scan called pet scan which may be better for this purpose).

 

If you look up the Amen clinic they are the ones who use it a lot in the US but I do not know if they do it for benzo wd. You can see on their web spect images.  I was sent by a psychiatrist. He was quite shocked at how bad it came out .. but really he didn’t change anything in the treatment but tell me to get off the z drug ASAP. He really couldn’t predict the future but was sure that within one year I would be much better. Once I was well I asked him why he sent me to this test and he said that he likes to know what the patient is facing and that this is a good tool.

 

I never took another scan for several reasons. The main one is that there is radiation involved and I saw no point in exposing my body to it. It is also very expensive and is not covered by my insurance. At this point I am feeling well and don’t see any advantage in doing that. Of course, I am curious. But to be truthful I would rather assume full recovery and act accordingly then face a not perfect scan. I am sure it would look very very different now. I assume it's still not perfect.

 

I am not surprised this triggers interest as so many of us go though one test after another only to get normal results. The fact that there is a test that is sensitive enough to detect our suffering is amazing.  Yet as I wrote in my story- I am not sure if doing it actually did me more good then harm as it really did not affect my treatment and it scared me very much. The one thing I did gain from it was the understanding that I needed to get off the z drug ASAP and perhaps just for this it was worth it.

 

Hope you find this interesting and helpful

 

HERE IS ASHTON ON THE MATTER:

 

THE ASHTON MANUAL SUPPLEMENT

A Supplement to Benzodiazepines: How They Work

& How to Withdraw (2002)

 

Permanent brain damage?

Structural damage. Many long-term benzodiazepine users who have stopped taking the drugs complain of a variety of seemingly irreversible psychological and/or physical symptoms which they attribute to permanent brain damage caused by the drugs. However, the question of whether benzodiazepines cause brain damage is still unsolved. …. many still symptomatic long-term ex-benzodiazepine users have had normal MRIs.

 

Functional damage. It is more likely that any long-term brain changes caused by benzodiazepines are functional rather than structural. To show such changes, it would be necessary to examine abnormalities of brain activity in long-term benzodiazepine users. Techniques for such studies are available: fMRI (functional MRI) measures regional blood flow; PET (positron emission tomography) and SPECT (single photon emission tomography) measure neurotransmitter and receptor activity; QEEG (quantitative electroencephalography) and MEG (magnetoencephalography) measure regional electrical activity. None of these techniques has been utilised in controlled studies of long-term benzodiazepine users. Cognitive performance could indicate impairments in certain brain areas, but no studies have extended for more than six months. Finally post-mortem studies could show abnormalities in brain receptors, and animal studies could show changes in neuronal gene expression. None of these studies has been undertaken. Nor have there been any studies examining abnormalities in other tissues or organs in long-term benzodiazepine users.

A controlled study of long-term benzodiazepine users using brain function techniques would have to be carefully designed and would involve a large number of age and sex matched subjects…

 

 

Thank you so much, Carem! Wonderful information! I really appreciate that you took the time to give us such a detailed response, as well as the information from Ashton's site. It's true that any study of benzodiazepine-affected people would have to be done very carefully. I have to wonder who would fund such a study. Certainly not a drug company! Perhaps an academic institution would undertake it, but they'd definitely have to be funded by a non-influencing organization.

 

I understand your thoughts on whether or not the SPECT scan was a good thing or a bad thing for you, but it must have been quite validating to see that what you were feeling was reflected in an objective test. You're right that so many of us have had testing that does NOT reflect what we're experiencing. In my case, it's disequilibrium. All is well on the tests, but my body says that I'm on a tiny boat in the middle of a big ocean, where I'm being tossed around in the middle of a dangerous storm. It's good that the tests have ruled out things like tumours and other dangerous abnormalities, but still, I'm dizzier than a drunken sailor!

 

Anyway, I'm so glad that you're doing so well. As you can see by the responses, your story has inspired so many of us, and we all wish you well. Take good care, and thanks again for responding to my questions!

 

 

Dear Carmen, congratulations! You have given me hope. I was on Klonopin for three years and am currently in hell. I have a severe rash amongst other symptoms and was losing hope. I pray I can be as lucky as you to be healed from all of this in the same time frame you were. Currently I’m 9 months 2 weeks off. AND don’t ever apologize for your English! You write extremely well! God bless you and I hope you have nothing but happiness from this day forward. 

Thanks Carem, this is inspiring. I will try the klonopin cuts (slow taper), it seemed to work for you. Also good to know about the curcurim, b vitamins, and magnesium. Thank you and all the best to you

Wow your story give me SO much hope that I will EVENTUALLY get of Clonazepam (Klonopin).  Just amazing.  The one issue that has kept me from progressing even at a snail's pace is bad insomnia.  I will be holding at the level I am again after another updose for a number of months.  Did you have insomnia (severe or mild) during the tapering process?  It is the one issue holding me back!  Again thank you for posting your success story. xxx

Thanks again for all your replies!!

As for insomnia - I didn't have insomnia when I was tapering but had pretty bad insomnia after I finished the z tapper. I then went to sleep restriction therapy - do look it up. It really worked for me and was a great help. Its a bit difficult and you need to be determined to do it but it worked for me.  Good luck!

Carem: I happened to stop by and saw your success story. I do miss our buddies on the K Klub board and think about you all so often.  Like you I could not have done this w/o all of you. We were a special group I think that supported each other through thick and thin and now are all so happy to be off of K and living our lives. 

 

So glad you are a success story!! Love Kgirl :smitten: :smitten: :smitten: