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TAKE THE MIDDLE PATH


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The middle path is best.  Let me explain by telling you my story…

 

There were two underlying roots of my addiction. Both stemmed from fear.

 

The first factor:  I have always had a horror of serious illness – not in the sense of phobia, but as in the usual human avoidance of an unpleasant topic.  If I don’t think about it, it will never happen to me.  I turned my attention away from those who suffered and inwardly thought, “I’m young; these things happen to other, older people.”

 

I gloried in being a high achieving, active person.  Through my 20s, 30s, 40s, 50s, 60s.  Then one day, I noticed my right fingers trembling.  Two visits to neurologists; two diagnoses of “nothing”.  But the fingers kept trembling.

You guessed it.  Third neurologist and a diagnosis of Parkinsons.  All came crashing down.  Hey, this was ME.  About to turn into one of those shaking, stumbling, frozen ones?

 

Second factor:  I have always had an unreasonable horror of insomnia.  This was a side effect of recurrent depressions, the first one of which happened in my 20s when life got too stressy (my fault entirely, but isn’t that always the way?)  I had always taken on too much – heading large projects, having to find major funding for them, meeting deadlines – and every now and then I crashed and burned.

 

I got to know my depressions intimately.  They always began suddenly… with insomnia, followed by anxiety, followed by blackness. The insomnia was a symptom of the depression.  But when I had trouble falling asleep, I freaked. So about 20 years ago, a doctor prescribed a pill that she assured me was absolutely non-addictive (at the time, this was what the medical profession thought).  It was called clonazepam -  Klonopin in the US. 

I started taking a .5 mil pill whenever I had trouble sleeping, like the night before I had to give a speech, or something.  I rarely took them more than once a week, if that.  All was well for years.

 

Cut to the present, or at least 4 years ago…

 

The Parkinsons diagnosis coincided with a bunch of things that most people know are stress factors.  I knew this too but couldn’t control it – sometimes that’s just life.

 

I had just retired and was having trouble adjusting to it, as most folks do. My husband and I had moved from a lovely quiet condo in the centre of our city to an apartment that I expected would be terrific.  High on a hill, it overlooked the city, was near a major park yet in walking distance to downtown, etc.  But it turned out to be quite the reverse of lovely, with unexpected and endless building “renovations”, constant drilling and hammering, revolving janitors, noisy neighbours, paper-thin walls, cooking odors, etc. etc.  At night I’d lie in bed and listen to the sirens of ambulances heading to the hospital a block away and the shrieks of drunk students stumbling home at 3 am.  I couldn’t take it so we decided to buy a house in a village about an hour away from the city.  Which meant we had to sell our country home in Vermont, which I had loved passionately for over 25 years.

 

Then a beloved friend died, in an unpleasant way.

 

So… retirement, moving, selling a loved property, death of a loved one, diagnosis of serious illness with its worsening symptoms.  All at exactly the same time.  I can handle this.  Yeah, right.

 

If I can sleep I can handle this.  Except I couldn’t – sleep or handle it.

 

This time the depression was a bad one.  I began to take a pill every night so I could sleep.  In a very short time .5 wasn’t enough and I upped to a 1 mg. pill.  Then added Nytol, antihistamines… anything to black out.

 

The depression got worse.  I began to notice a pattern… Every day began with blackness and suicidal thoughts, which very slowly improved over the day until by about 6pm I felt almost normal.  I struggled on, doing 3 hours of qigong every day to keep the Parkinsons at bay.  Now my hands were shaking and at night in bed I couldn’t keep them still.  My legs began to be affected and my balance sucked.  I went onto Parkinsons medication, started talking to a psychologist, and tried to get on with things.

 

Then a new symptom – severe anxiety each morning at about 10 am which peaked at mid-day and abated slowly towards evening.  I have never been particularly anxious.  Hey wait a minute – could this have anything to do with the Klonopin?

 

I went online and found Benzo Buddies.  Soon I realized that it was possible – just possible – that the blackness and anxiety might be side effects of the medication I was now talking each and every night.  How much was the underlying depression and how much the pill?  Was it possible that the “non-addictive” pill prescribed by my doctor so many years ago was actually highly addictive?  Was I, in fact, an addict?

 

I remembered when – at a very much younger age – I had cold-turkeyed off Valium.  It was not pleasant.  I remembered walking downtown at 3 am among the hookers and street people and wondering why nobody bothered me, then glimpsing my reflection in a store window and realizing “Oh, I get it.  I’m the craziest person here.”  Was this about to happen again? Was I strong enough to do it?

 

I talked to a doctor.  He wrote down a detox plan and gave it to me.  I now know that the detox he recommended was much too fast, but hey, this was a doctor.  He should know, right?

 

For the first two days all was well.  Then total crash.  No sleep, freak-out anxiety, hot baths.  This is not working.  I am an addict.  I’ll never be able to do this. Back on the pills, which were working less and less effectively.

 

I went back to Benzo Buddies and read more stories.  Tried liquid titration, but it was too fussy for me.  Eventually I decided to try a very slow withdrawal using two gram scales (two in order to be sure the weights were accurate). 

I kept a journal to track my progress.  It was slow going.  In fact, it took about 14 months.  But it happened.  And here’s what I learned…

 

Nothing is static.  You’re not doomed.  You might feel like shit right now, but – as with everything in life – IT WILL PASS.  This is a very important thought to hold on to.  Think back to all the downers you’ve lived through in your life.  Think back to all the great times.  What’s the constant?  They all changed.  Everything is ephemeral.  You will pass through.

 

Very slow and steady wins the race.  If I’d tried to cut my dosage more rapidly, I would have failed… or at the very least, suffered much more than I had to.  I cut my pills by miniscule amounts.  And noted it all down in the journal.  From 1 mg to .95 mg to .9375 mg, to .875 mg to .8125 mg and so on.  How long did I hold at each step?  At least a 7-10 days and often much longer.  My body kind of told me when I was ready for another cut.  Patience. Patience.

 

It did NOT get harder as the dosage decreased.  It got easier.  So don’t obsess about this, or believe what others may say.  I’ve read a lot of posts here about “acute withdrawal” – never had it.

 

You WILL sleep. Maybe just a few hours, but it was extremely rare not to get any sleep.  In fact, I’m not sure this ever happened.  I kept notes, and started to track the “good nights” (eg: nights with more than 4-5 hours) by highlighting them in yellow.  Over the months I noticed a lot more yellow. I know you don’t believe me but it’s true – sleep happens naturally.  Oh and by the way, exercise really helps.

 

Yes, the morning blackness and anxiety were caused by the Klonopin/clonazepam.  They went away.  The anxiety disappeared first.  The blackness took more time to dissipate; I occasionally still have traces, but less and less.

 

DON’T OBSESS (be cool).  Don’t be wedded to the idea of keeping to some sort of “schedule”.  This is what I mean by “the middle path”.  Give yourself permission to fail, to sometimes fall off the wagon.  People write a lot about “kindling” (a phenomenon I never really understood), but all this does is to increase your stress.  The object is to make your life easier to handle, not more difficult.  So I didn’t obsess about the occasional rescue pill. And I avoided the more panicky Benzo Buddies posts.

 

There is more than one way to do this.  Another reason for not freaking out over what others have written.  Everyone is different; be aware of what your body and soul are comfortable with.  Not sure what that is?  Listen.

 

Don’t sweat waves and windows.  Because I don’t believe that I ever had either, and I’m wondering whether some folks may be paying too much attention to what are fairly natural shifts in mood or body energy.  Yes, some days felt worse, but I never interpreted the swing as a wave, nor did I interpret the good days as a window.  It’s just life.

 

What I’m trying to get across to you is that many people withdrawing from benzos prefer to interpret any passing body/mind sensation as a “symptom” or a “wave” or “kindling” or …  you get my point. These special names become a code that only others in on the jargon can understand.  That’s probably why jargon has developed around the experience of withdrawal; to create a group dynamic and language that’s common.  Nothing particularly wrong with this, but it can be self-defeating. Naming an experience gives it power.  I’m suggesting that you withdraw the power from the words.

 

 

 

So, what actually happened to me?  Well, I struggled with sleep, but it wasn’t that bad. The worst part was worrying about whether I’d sleep or not… now I don’t obsess.  I always sleep eventually.  Basically, who f*cking cares?

 

The terrible morning blackness and suicidal impulses gradually disappeared.  The anxiety quickly and totally vanished.  I did have tinnitus – sometimes very strongly – but it reduced as the dosage reduced and now is unnoticeable.  Some stomach problems were quickly cured by a wonderful product called Renew Life Ultimate Flora (a probiotic).

 

It’s been about five months since my last tiny chip of K/clonazepam and it was an invisible transition.  One day I took a chip, the next I didn’t.  The world didn’t collapse.

 

How am I?  Increasingly well.  I look forward to my days and am very thankful for what I see around me.  In fact, one of the most startling changes is how the world appears to me now… bright, colorful, full of detail and interest.  This is, I think, a function of withdrawing from the drug. Everything gets brighter – literally.

 

My depression is completely gone, and – most interestingly – my Parkinsons is improving.  Yes, I know it’s supposed to be an inexorable descent into incapacity, but that is not my experience.  You do have to work tirelessly at improving your physical health, so I walk, bike, etc. every day.  My hands no longer tremor, my balance is back, my muscle cramps have disappeared, I no longer have tiny handwriting or stammer and my chin no longer shakes.  Most people don’t believe me when I say I have Parkinsons. 

 

So what have I learned?  That nothing is a given and we do have the power to change our situations.  It takes some courage, but not so much as you think.  It takes some time, and you must be willing to invest in the process and have patience.  Above all, let completely go of any expectations and try to keep in mind that everything passes.

 

On a related note, don’t become obsessed about the stories of others on this website, or assume that because someone experiences a particular symptom it will happen to you.  Remember that naming something invests it with power.

 

And a note to all you younger people… don’t panic.  I think that older people manage crises better than younger ones, largely because we’ve experienced more of life.  I remember myself in my 20s and 30s, and how a difficult situation used to floor me.  Now I’m much calmer.  I’ve weathered more storms and know that the way through is just to keep going.

 

…take the middle path.

 

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Thanks kqcat for a great post ! Very inspiring and I agree with everything you said . You're a strong woman!

Enjoy your life free of benzos  :smitten:

Miyu

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Oh my gosh...ur story is incredible to me....do u truly really believe u still have Parkinson’s?

I would love your take on this please

I don’t think Parkinson sxs get better.. once they start it’s a natural progression I believe...

 

There was another person on here who was told he had Parkinson’s once he was off the drugs less then a year the sxs slowly lifted and he doesn’t have them anymore

 

Did you experience any other sxs while tapering?

 

I hope u can answer- thank u so much for sharing!

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for pleasebehere...

 

yes, I still have Parkinsons, but it's  better than it was two years ago.  Perhaps because I'm not as freaked about it or perhaps because I exercise more or perhaps - oh who knows!  My legs shake when I stand still, but that's about it.

 

There's a theory that very driven, emotionally repressed people are more likely to have the disease.  I was certainly all of that.  In fact, I couldn't cry.  But now I can.  A good thing.

 

Re withdrawal symptoms.  Hmmm.  Well, as I mentioned, I did have some digestive issues and tinnitis, but these are gone.  Actually, I cannot remember anything else apart from the depression and anxiety... and insomnia.

 

 

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Thank u so much for answering. I appreciate it very much.

 

One more thing; did the Parkinson’s diagnosis come while u were on the kolonopin? I’ve heard of drug induced Parkinson’s and people being wrongly misdiagnosed and just wondered about that.

 

I hope I’m not being too forward- this whole thing confuses me when I see people diagnosed with things and after time passes; it turns out the sxs dissipate almost entirely even over a couple years;;;;;

 

It’s all so bizarre and health anxiety is so severe...

 

Thank u again for ur story

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Wonderful post! Thanks so much for sharing it in such a clear, honest and helpful manner. I wish you all the best!
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Thanks for sharing your story, my psychiatrist told me things get better after 60 and that he doesn't have any patients that age or older; I hope to reach your age with the valor you have. Keep exercising and enjoy everything you can.  :thumbsup:
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Love LOVE your story! It was just what I needed today! I started a slow taper 18 months ago (2% a month) after attempting (and failing miserably at a fast taper)...and like you....I have been letting my body talk to me-so sometimes I hold for quite awhile-sometimes I can taper more than 2%. I used to be on Benzo Buddies in the beginning a lot-but have found that the horror stories just create a (reality?) in my mind I don't need. I do have one question....I have tapered down to .22 and do seem to have hit a wall. I was going along quite well, but the last cut put me in a bad tailspin, so I increased my dose from .2 to .22 and am leveled out again (pretty much), but now I am afraid to start tapering again. Any advice?
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Hi ddjohn...

 

I'm afraid I don't have any advice for you.  Are you sure you're not focusing too much on your body?  You made such a minor change that it doesn't seem possible for this to be a reaction.  Why not just stay where you are for a while, then try again?

 

 

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Hi ddjohn...

 

I'm afraid I don't have any advice for you.  Are you sure you're not focusing too much on your body?  You made such a minor change that it doesn't seem possible for this to be a reaction.  Why not just stay where you are for a while, then try again?

 

Actually it can....hard to believe;  I know  :'(. People with sensitized nervous systems can feel the tiniest reductions referred to as minor fluctuations....

It’s been documented on www.benzoinfo.com which refers to Heather Ashton’s work and website documenting this if I understood it correctly.

 

Thank you very much for answering me and all the best for you always

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What a great story! How did you cut the klonopin in such small pieces?

I would love to know so I can continue my taper.

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For Angelinny555...

 

At first I used a tiny scissors, then I just "sanded" the piece to reduce its weight. 

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Thank you for your story, I am tapering ativan I am now at 2mgs I was at 5 mgs 3 months ago and was doing ok until my tinnitus which I already had before is spiking badly. So to hear your tinnitus going away gives my a little bit of hope. I think I may have been tapering a bit too fast so I am slowing down now.

 

Did u have tinnitus before your withdrawal? Or was it from withdrawal? If it wasn't for this horrible condition I would be doing ok but the noise is driving me crazy and gives me very bad anxiety. I hope it will go down like it was before, but it really scares me that I made my tinnitus worse because of these damn benzo's.

 

Thanx again.

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Tp BattleGaba...

 

I don't think I had tinnitis before this.  In fact, I'm pretty sure I didn't.

Noticed the tinnitis as I reduced my dose.

And yes, it was loud.

 

Don't worry about it.  It'll get less and less over time.

 

Remember to take the middle path - which means, relax!

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  • 2 weeks later...

An Amazing post.  One of the best that I have read.  Here are my favorite parts:

 

Nothing is static.  You’re not doomed.  You might feel like shit right now, but – as with everything in life – IT WILL PASS.  This is a very important thought to hold on to.  Think back to all the downers you’ve lived through in your life.  Think back to all the great times.  What’s the constant?  They all changed.  Everything is ephemeral.  You will pass through.

 

Very slow and steady wins the race.  If I’d tried to cut my dosage more rapidly, I would have failed… or at the very least, suffered much more than I had to.  I cut my pills by miniscule amounts.  And noted it all down in the journal.  From 1 mg to .95 mg to .9375 mg, to .875 mg to .8125 mg and so on.  How long did I hold at each step?  At least a 7-10 days and often much longer.  My body kind of told me when I was ready for another cut.  Patience. Patience.

 

It did NOT get harder as the dosage decreased.  It got easier.  So don’t obsess about this, or believe what others may say.  I’ve read a lot of posts here about “acute withdrawal” – never had it.

 

You WILL sleep. Maybe just a few hours, but it was extremely rare not to get any sleep.  In fact, I’m not sure this ever happened.  I kept notes, and started to track the “good nights” (eg: nights with more than 4-5 hours) by highlighting them in yellow.  Over the months I noticed a lot more yellow. I know you don’t believe me but it’s true – sleep happens naturally.  Oh and by the way, exercise really helps.

 

Yes, the morning blackness and anxiety were caused by the Klonopin/clonazepam.  They went away.  The anxiety disappeared first.  The blackness took more time to dissipate; I occasionally still have traces, but less and less.

 

DON’T OBSESS (be cool).  Don’t be wedded to the idea of keeping to some sort of “schedule”.  This is what I mean by “the middle path”.  Give yourself permission to fail, to sometimes fall off the wagon.  People write a lot about “kindling” (a phenomenon I never really understood), but all this does is to increase your stress.  The object is to make your life easier to handle, not more difficult.  So I didn’t obsess about the occasional rescue pill. And I avoided the more panicky Benzo Buddies posts.

 

There is more than one way to do this.  Another reason for not freaking out over what others have written.  Everyone is different; be aware of what your body and soul are comfortable with.  Not sure what that is?  Listen.

 

Don’t sweat waves and windows.  Because I don’t believe that I ever had either, and I’m wondering whether some folks may be paying too much attention to what are fairly natural shifts in mood or body energy.  Yes, some days felt worse, but I never interpreted the swing as a wave, nor did I interpret the good days as a window.  It’s just life.

 

What I’m trying to get across to you is that many people withdrawing from benzos prefer to interpret any passing body/mind sensation as a “symptom” or a “wave” or “kindling” or …  you get my point. These special names become a code that only others in on the jargon can understand.  That’s probably why jargon has developed around the experience of withdrawal; to create a group dynamic and language that’s common.  Nothing particularly wrong with this, but it can be self-defeating. Naming an experience gives it power.  I’m suggesting that you withdraw the power from the words.

 

On a related note, don’t become obsessed about the stories of others on this website, or assume that because someone experiences a particular symptom it will happen to you.  Remember that naming something invests it with power.

 

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  • 6 months later...

This is so very truthful, honest and realistic.

The one success story I read over and over. I was lucky enough to read it within the first week of my taper and it all stuck with me.

Bump again. :)

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