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Healing after Clonazepam & Progesterone addiction


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I was doubtful whether to call it a “success story” or “successful process”. However, I came to the conclusion that a story of a person with epilepsy who did Clonazepam cold turkey and not just survived but is improving consistently is a success story indeed. 

 

 

Pre-withdrawal facts

 

I have temporal lobe epilepsy and PMDD (pre-menstrual dysphoric disorder).

Prior and during the benzo-withdrawal I have been in a nerve-wrecking process of analyzing/ sorting out my relationship with my family of origin, especially with my mother who has borderline personality disorder. The loss of “an ideal mother” was a kind of an existential crisis.

 

My GP prescribed me Clonazepam for a fear of flights and “stress”. About a month after I started taking Clonazepam my seizures worsened. I became depressed with a sense of “impending doom”– a very alien depression for me. I also began having panic attacks and developed agoraphobia; I had neither of them before. I gradually increased the Clonazepam dose from 0.5 to 2.5mg but it helped only temporally. To get a relief I started drinking alcohol and soon found myself drinking regularly. Now I know that alcohol was an unconscious compensation for a developing tolerance of Clonazepam; GABA receptors were crying out “give us more benzo-!”

 

I have tried various anticonvulsants to control epilepsy for some time; when I started taking Clonazepam I was in a process of tasting a new one called Keppra. Ironically, I attributed all Clonazepam-related problems to the side-effects of Keppra. Altogether I have been on Clonazepam for five months. 

 

My GP advised me to stop taking both Keppra and Clonazepam cold turkey. He said that I “will not have any problems”. I stopped Keppra first and indeed did not have any problems. A week later I stopped Clonazepam coming from 2.5mg a day to 0.

 

 

Withdrawal from Clonazepam

 

Because I have epilepsy and stopped taking two anticonvulsants cold turkey it is not at all surprising that my withdrawal symptoms were extreme. Within thirty hours I got uncontrolled shaking, fever, muscle pains and spasms (pseudo-suffocation due to throat muscle contraction was especially bad), diarrhea, nausea, etc. Soon the seizures started, followed by delusions and audio- and visual hallucinations. Then psychotic depression followed. My GP whom I saw two weeks into the withdrawal said that these symptoms had nothing to do with Clonazepam withdrawal and, in fact, there is no such a thing as “benzo-withdrawal”. Luckily, I have an acquaintance experienced in coming off Clonazepam and he explained to me what I was going through. He told me that I could reinstate and then gradually come off it or endure. Because I was two and a half weeks into the process I chose to endure.

 

Of all withdrawal symptoms, psychotic depression was the worst. The world changed overnight. I am a convinced Christian, but at that time I lost my faith in God. Consequentially, the life lost its meaning. The universe became a chaotic, ugly, and frightening. I was completely insane, deluded and desperate most of the time. A month into withdrawal I had the worst panic attack ever – it convinced me that I was about to die and traumatized me so much that I would not be able to lie down on my bed for weeks. My husband broke his leg just before my withdrawal, and I had to take care of him. I have no idea how I did it.

 

Three months later, feeling somewhat better (minus ten kilos, less psychotic, still very desperate and depressed but slowly regaining my faith in God) I somehow decided that my symptoms were not withdrawal symptoms but PMDD. So I began using Bioidentical Progesterone Cream which I was prescribed before and used without any side-effects or, in fact, any effect in the past. Initially most of my withdrawal symptoms subsided but then I discovered that I developed a tolerance very similar to Clonazepam tolerance. I could not manage even a few days without Progesterone without becoming depressed and semi-psychotic. The fear of impending death and loss of faith yet again were particularly prominent. I researched scientific papers and discovered that progesterone affects GABA receptors just like benzo- do. I realized that I did not in fact withdraw from Clonazepam but substituted one addiction for another. I decided to stop.

 

 

Withdrawal from Progesterone

 

This time I did it relatively slow: I gradually reduced my dose to 1/3 and then stopped as soon as the next period started. I also began taking anticonvulsant Keppra again. Even gradual reduction with the aid of Keppra brought severe depression and psychotic episodes, and also other physical symptoms identical to those I had after stopping Clonazepam. This time panic attacks and agoraphobia were even worse than before – I was confined to the house most of the time. I also realized that alcohol worked just as Progesterone in the past, and stopped drinking completely. It was very hard but ultimately helped.

I also engaged in learning cognitive-behavioural therapy techniques and self-psychoanalysis. Gradually it became clear to me that panic attacks were caused not only by withdrawal but also by unresolved relationship with my mother and the rest of my family of origin.

 

Most of panic attacks happened while I was in shopping areas so I made a point of going shopping every day. It was very scary and difficult because my epileptic “auras” are similar to panic attacks so I could hardly distinguish. However, I decided “screw you all = epilepsy and panic”, persevered and improved slowly.

 

As soon as I, with the help of a psychotherapist, finished my analysis, I made a series of decisions concerning the boundaries between me and my family. It was hard but necessary for my sanity. It released me from the overwhelming sense of guilt, depression, and panic attacks to a substantial degree. 

 

Now I am one year and a month Clonazepam-free and three months Progesterone-free. I still have occasional depressive feelings, muscle contractions in chest and throat, and fevers – all of these mostly before my period and to much lesser degree than before.  Anticonvulsant Keppra is working well so far – I do not have nocturnal seizures any more, and the whole number of seizures reduced. The most important is that I am feeling myself at last. I was not myself when I was taking Clonazepam/ Progesterone.

 

 

What I found helpful

 

- learning about benzo- withdrawal

- benzo- forums

- abstaining from alcohol entirely (helps seizures/ panic attacks)

- taking Magnesium Complete tablets and also Epsom Salt bath; Calcium tablets (helps insomnia/ muscle cramps)

- essential oils: bergamot and tangerine in a bath (for calmness and good sleep); Jasmine to smell (antidepressant, anti-seizure)

- talking to anyone who cares

- cognitive-behavioural therapy (for panic attacks)

 

Among these things I would especially recommend cognitive-behavoural therapy as a method which helps the majority of people.

 

I was lucky to have the support of my very understanding husband and also of a few friends, almost all of them are working in neuroscience. Even to them, however, the severity of benzo- withdrawal was a complete shock.

 

I deliberately wrote a detailed story because I hope that the relevant details may be helpful. My case is quite complex because it involves epilepsy, PMDD and also history of emotional abuse/ traumatic childhood. I am convinced that every unresolved issue, every peculiarities of one’s psyche can come to the surface many times fold during the withdrawal process causing even more suffering the withdrawal itself. This is why a multifaceted approach may be needed. In my case, psychotherapy/ psychoanalysis was not less important than abstaining from harmful substances.

 

 

I wish everyone to heal as soon as possible. Remember, the withdrawal eventually will come to its end even if you do not believe it right now. All the best!

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Congratulations!!! 

 

CBT also helps me -- especially to not try to predict the future events.  I'm always wrong anyway and so why waste that energy; learning to turn those worry thoughts into loving thoughts. 

 

I wish you continued success!!

 

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Your story was very important to me as I am on Keppra and have worse withdrawal symptoms pre-menstrually when progesterone drops.  May continued healing come your way!!
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Very important story indeed, for both people with epilepsy and to make people aware that there is such a thing as progesterone w/d.  Thank you for sharing!
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Boy you really came through it doublewave. How brave..............I"ll bet you were unnerved with your very serious variable. Thankyou so much for sharing this with us. I hope the symptoms you have left resolve sooner than later. And it's good to read a post about progesterone as well, although it can differ for some, many don't even know it can be an issue. And we see it here.

 

More healing to you!!  :smitten:

 

 

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CBT also helps me -- especially to not try to predict the future events.  I'm always wrong anyway and so why waste that energy; learning to turn those worry thoughts into loving thoughts. 

 

I admit I was very sceptical about CBT first - it looked too simplistic to me but I gave it a try and it worked. I was surprised )).

------------------------------------

 

To everyone - thank you very much for your responces and encouragement.

 

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  • 2 months later...

Doublewave,

I can't believe how many pieces of your story are similar to mine, even the Christianity/God part.  I do not have epilepsy, though.

 

I am 5 months off clonazepam after 12 years.  The last two years of clonazepam I was also put on bioidentical progesterone and estrogen.  I am just realizing now that I am starting to surface in the clon. w/d, that I have tolerance w/d to the hormones.  I am miserable and need to get off of them.  I have read many articles put up by Perseverance about the similarities to benzos and hormones.  I have to educate my doctor about these connections and about needing to go off very slowly.  Previously, he had me reduce my dose by quite a bit and do it suddenly.  It threw me into bad withdrawals.  I thought it was all the fault of the clonazepam.  But now I realize that it makes more sense that it was the hormones.

 

I am on oral and it is not so easy to reduce as topical.  I am trying to figure out from your story over how long you tapered.  Was it six months?

 

I am waiting to get a call back from my doctor, but I already know he doesn't know how to get off.  I'm trying to find any information I can that may lead me to a taper that is tolerable.  I am "scared to death," of reliving the insanity of the two c/t withdrawals I went through before I knew what was happening.  The doctors who took me off c/t didn't know not to do it either.  I am most afraid of plummeting into the horrible depression, anxiety and separation from reality.  Where I am now (and it isn't that great) is so much better than I have been in over a decade.

 

If you have any information for me, I would really appreciate it.  I'm trying to get free from all these prescriptions and actually live life!

Wish

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Hi wishIdknown

I am trying to figure out from your story over how long you tapered.  Was it six months?

 

If you have any information for me, I would really appreciate it.  I'm trying to get free from all these prescriptions and actually live life!

 

I've just answered your private message.

Tapering off - two month: 2/3 and then 1/3, I think. In any case, three months maximum - 3/4 - 2/4 - 1/4 of the original dose.

 

I understand very well your fears. I think the fact that you don't have epilepsy is very good! - my major problems were epilepsy-related: seizures and interictal psychiatric symptoms. Although you have been on these drugs longer than I your WD may be not worse than mine precisely because you don't have original seizure problems.

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Pattylu

Thank you very much.

 

----------------------------------

 

Update: I think I am 90% well. I have WD symptoms (crowling sensation under my skin, depression, fevers, tiredness) but they all occur just before and during my period and to a much lesser extent than before. For example, last night I had a few nocturnal seizures because it is that time.

I also tried to experiment with alcohol and discovered that anything more than one glass of red wine per week increases the WD symptoms.

I am still taking Keppra though but I would need anticonvulsant for epilepsy anyway. I am taking a very low dose; I increase it a bit during a "problematic" time of the cycle.

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  • 5 months later...

Update

Now it is about 11 months after I stopped using Progesterone cream and 20 months since I C/T Clonazepam. Since I wrote here last time (February this year) I was improving in some areas but worsening in others. Two major worsening areas were irregular menstrual cycles (dysfunctional bleeding – spotting for weeks and unovulation) and neurological problems – memory problems, troubles with cognition, apathy, bizarre sense of impending doom/ death and OCD-type thinking about disasters. I felt that I was very old.

I attributed all the above to severe stress I had for some time but then some other symptoms started popping up – increasing ringing in my ears, insomnia, night terrors. I also noticed that my skin is turning from oily/normal into very dry, paper-like.

 

I felt that all this has been driven by my messed up hormones so I started researching yet again. To cut the story short I found that vitamins B (among other things) are very important for normal female cycles. I knew however that many people after benzo-WD have problems with taking B. Nevertheless I tried and immediately had a bad reaction, namely shaking/ shivering/ sensing something was crawling under my skin, just like in the beginning of my C/T Clonazepam. However, the day after I took B I got a normal bleeding, first time since two months of spotting. So I decided to adjust the dose of B and to continue. I have been taking ½ a Mega B Complex tablet a day for two weeks. The results are quite stunning:

- I lost have depression/ doom/ preoccupation with death any more

- cognition is improving

- less ringing in my ears

- my skin is normal/ oily again and elastic

- I am less pale

- less apathy

- much less seizure activity

 

I discovered that anticonvulsants deplete a body of vitamin B (relatively recent research) and I have been taking these drugs for years so I may have B-deficiency indeed. Also, the rapid change of skin and mood is telling I think.

 

This is all preliminary of course and I am refraining form my usual “O, yes, I found it!”

 

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Bravo Doublewave! :thumbsup: I hope you have continuted success with your nutritional supplementation and with your research.  :)

 

Carlos

mtnhigh

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Hi doublewave-

I've been following your story here on bb. I'm 10 months into my taper. I do ok until the dreaded progesterone drop happens. Do you have any suggestions how to deal with this. I'm hesitant to use the cream. It could help or make things worse. I know I will have problems getting off of it too. Did you find your period symptoms eventually worked themselves out. I don't know what to do. I'm going very very very slow with my taper now. I get extremely depressed when the progesterone drops. Did you find anything that helped? I'm happy to see the vit b is helping you. I had mine checked, it's ok. The only other thing I take is vit d because it was low. Thanks for any help you can offer.

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My story is similar to yours as well.  I don't have epilepsy, but I've had seizures in withdrawal before.  I ended up on benzos because of PMDD.  I also felt that my PMDD and withdrawal put me in a very, very dark place where I nearly completely lost my faith in God and simply wanted to die.  I'm terrified to get into that state again, so I've been tapering very slowly.  When I overdo my taper and crash it terrifies me because it seems like all I've learned from CBT and all my efforts to rebuild my faith are very little help.  The darkness and terror are so horrible.  The ups and downs are horrible.  I love it when I get a window, but there's always a little fear in the background because I know what kind of hell awaits me the next time I take I plunge.  It's nearly impossible to control symptoms with the taper rate because the PMDD can make me miserable regardless of any cut I make or don't make.  I know there's hope for me though.  I've gotten much better during my taper than I was at the beginning of it.  I've learned a lot, and it all helps me as long as I'm not in the nastiest part of the month.  I hope you continue to heal.
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Thank you for your story!

 

I really identified with your faith crisis and panic attacks/agoraphobia.  I find it hard sometimes to remember what I've learned in CBT because of the intensity of the terror I feel.  It's good to know it gets better.

 

I was on Klonopin/Clonazepam for 15 years for panic disorder.  Do you think I would benefit from a B vitamin as well?  I don't have PMDD, though I do have worse anxiety & panic around my period time.

 

Thank you again for the inspiration & encouragement of your story!

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DW

 

Congrats on your progress. I also experienced depression with psychotic features. It was horrible beyond description. Much worse that the rapid Klonopin taper that ensued when I was a hospital inpatient. I too am healing.

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Update

Now it is about 11 months after I stopped using Progesterone cream and 20 months since I C/T Clonazepam. Since I wrote here last time (February this year) I was improving in some areas but worsening in others. Two major worsening areas were irregular menstrual cycles (dysfunctional bleeding – spotting for weeks and unovulation) and neurological problems – memory problems, troubles with cognition, apathy, bizarre sense of impending doom/ death and OCD-type thinking about disasters. I felt that I was very old.

I attributed all the above to severe stress I had for some time but then some other symptoms started popping up – increasing ringing in my ears, insomnia, night terrors. I also noticed that my skin is turning from oily/normal into very dry, paper-like.

 

I felt that all this has been driven by my messed up hormones so I started researching yet again. To cut the story short I found that vitamins B (among other things) are very important for normal female cycles. I knew however that many people after benzo-WD have problems with taking B. Nevertheless I tried and immediately had a bad reaction, namely shaking/ shivering/ sensing something was crawling under my skin, just like in the beginning of my C/T Clonazepam. However, the day after I took B I got a normal bleeding, first time since two months of spotting. So I decided to adjust the dose of B and to continue. I have been taking ½ a Mega B Complex tablet a day for two weeks. The results are quite stunning:

- I lost have depression/ doom/ preoccupation with death any more

- cognition is improving

- less ringing in my ears

- my skin is normal/ oily again and elastic

- I am less pale

- less apathy

- much less seizure activity

 

I discovered that anticonvulsants deplete a body of vitamin B (relatively recent research) and I have been taking these drugs for years so I may have B-deficiency indeed. Also, the rapid change of skin and mood is telling I think.

 

This is all preliminary of course and I am refraining form my usual “O, yes, I found it!”

 

Doublewave,

 

Wow!  I am so glad I happened upon this!  I too have had serious menstrual and neurological/cognitive issues after taking benzos.  And of course I was prescribed progesterone cream for the menstrual dysfunction. 

 

I had been on a B vit that I stopped taking after my ct and when I decided to try taking it again I had bad revving in sx and stopped it.  But now that I've read about your experience I may give it another go and just adjust my dose as you did.  Thank you for posting about this!!  Please continue to let us know how you are doing.  :)

 

Sunny

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  • 2 weeks later...

Hi doublewave-

I've been following your story here on bb. I'm 10 months into my taper. I do ok until the dreaded progesterone drop happens. Do you have any suggestions how to deal with this. I'm hesitant to use the cream. It could help or make things worse. I know I will have problems getting off of it too. Did you find your period symptoms eventually worked themselves out.

Hi mm74

I am sorry, I could not respond earlier.

My periods are still a mess so I don't think I can offer a sound advice apart from taking Calcium and Magnesium - they do help although in a subtle way. 

One thing I can say is that my periods were like a clock before Clonazepam.

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Doublewave,

 

Wow!  I am so glad I happened upon this!  I too have had serious menstrual and neurological/cognitive issues after taking benzos.  And of course I was prescribed progesterone cream for the menstrual dysfunction. 

 

I had been on a B vit that I stopped taking after my ct and when I decided to try taking it again I had bad revving in sx and stopped it.  But now that I've read about your experience I may give it another go and just adjust my dose as you did.  Thank you for posting about this!!  Please continue to let us know how you are doing.  :)

 

Sunny

sunnygirl02

Thank you for your message. I am actually relived that I am not alone - I mean my menstrual problems :(.

I've just learnt that I have a uterine polyp ((. I researched and found out that they can appear because of the excess of estrogen. I certainly did/ do have too much estrogen and I am not sure what to do next. Vitamin B apparently helps to bring hormones to a balance, and I am absolutely not keen on a surgery. I am sure that these gyno problems I have are due to benzo W/D (too much cortisol causes too little progesterone cause too much estrogen).

I am currently taking B and iron.

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I was on Klonopin/Clonazepam for 15 years for panic disorder.  Do you think I would benefit from a B vitamin as well?  I don't have PMDD, though I do have worse anxiety & panic around my period time.

Penelope, thank you.

I do not know if you would benefit from B but it does not hurt to try )).

I took Magnesium/ Calcium and they help with panic but B helped even more. And it lifted depression (gloom/ doom).

And yes, you will feel better. I know it is very hard but just try to hang on  :).

 

-----------------------------------------

 

Thank you very much to everyone.

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Doublewave,

 

Wow!  I am so glad I happened upon this!  I too have had serious menstrual and neurological/cognitive issues after taking benzos.  And of course I was prescribed progesterone cream for the menstrual dysfunction. 

 

I had been on a B vit that I stopped taking after my ct and when I decided to try taking it again I had bad revving in sx and stopped it.  But now that I've read about your experience I may give it another go and just adjust my dose as you did.  Thank you for posting about this!!  Please continue to let us know how you are doing.  :)

 

Sunny

sunnygirl02

Thank you for your message. I am actually relived that I am not alone - I mean my menstrual problems :(.

I've just learnt that I have a uterine polyp ((. I researched and found out that they can appear because of the excess of estrogen. I certainly did/ do have too much estrogen and I am not sure what to do next. Vitamin B apparently helps to bring hormones to a balance, and I am absolutely not keen on a surgery. I am sure that these gyno problems I have are due to benzo W/D (too much cortisol causes too little progesterone cause too much estrogen).

I am currently taking B and iron.

 

Crap.  It all just stinks, doesn't it?  I'm sure my issues had/have to do with benzos too.  But I'm glad I learned what the problems was.  Good luck girl.  Hang in there.  :hug:

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That's very interesting about the progesterone - the Ashton Manual suggests there could be a link between menstrual disorders and benzos, but I haven't found anything that specifically explains how benzos affect hormones.

 

I had a hysterectomy two years ago and started hormone replacement therapy in March.  I was tested and found that my hormones are low - so for health reasons, it is important for me to eventually balance out my hormones.  I couldn't tolerate low doses of progesterone and estrogen, but I was able to stay on the testosterone.  I believe from a lack of symptoms that my testosterone level is normal.  My hormone nurse had me start DHEA and pregnenalone in April.  This was when the anxiety and insomnia started.  My nurse prescribed me Klonopin (WHY????). 

 

Hormones can have a very real effect on mental health, and what's more, I am certain that changing hormone levels changes the way I react to pharmaceuticals.  I developed worse or previously non-existent side effects directly after changing my hormone doses with Sudafed, Xanax and Inderal.  Perhaps others are experiencing a similar phenomenon?

 

I knew I needed to be off all pharmaceuticals to resume pursuing hormone balance, but it is good to know I need to be through my withdrawals as well.  Thank you Doublewave for your post.

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