A major success story (for me!)

I will start with an apology for a very long post. It's a long story, but I post it because I know there are people here who struggle, and who will read this late at night and who might get some motivation or at least some sort of relief from my experiences.

 

Even if the story here retells my experience up to and including the taper, I also include the post-taper period. So this is a success story!

 

The beginning

I have struggled with sleeping problems since childhood. I am now 42. I have chronic asthma bronchitis which has lead to immune system issues and frequent health problems. I would often go for weeks without sleeping. I remember in college how I struggled with making it on time to my morning classes due to lack of sleep. At 22, when I worked for a while between studies, I was unable to sleep for several months, and my employer sent me to the ER, which made me realize that something to be done. I got sleeping pills on occasion, but these were pretty mild and not very effective. They usually stopped working after 1 night, if they worked at all. But for years I refused to take anything stronger. I even refused to keep more than a few days' worth of sleep medication at home.

 

On the meds

In 1999, at 28, I hit the wall - big time. Severe, never-ending sleeping problems combined with a psychological burnout at work forced me into a six-month sick leave which eventually cost me my job (I got married during this period, which I remember as the only positive thing to happen). At this time I had spent a few years on Zoloft due to anxiety problems, and it did relieve some of those problems. But this time around I was unable to cope with the extreme loss of sleep.

 

That was when I was first prescribed "real" sleep medication. I do not remember now what the first brands were. Since I could neither fall asleep nor stay asleep, I was put on mixes of pills which knocked me out and pills which kept me asleep.

 

This eventually led to Imovane (z-drug) and Rivotril (klonazepam, benzo).

 

These drugs really helped me, for a long time. While I seriously regret having ever started on sleep medication, I can see why I stayed on them for so long. I fell asleep and remained asleep - miracles for me. I was able to hold regular jobs and even take care of my wife and kids. The deep morning drowsiness became the norm. I struggled with a lot of physical pain through all these years. I had aches all over the place, mysteriously moving from one joint to the next overnight. I had monster headaches. My weight fluctuated wildly (I eventually gained almost 10 kilos even though I exercised regularly). My stomach often complained. The sum of all these troubles was more or less constant, even if they waxed and waned at different rates.

 

But one of the worst things was that I could never really relax. Whenever I closed my eyes, at day or at night, I could feel the "rush" in my body - an endless song of stress, anxiety, restlessness and fear. I always had to read until I feel asleep, sometimes all through the night without sleep, because just lying in bed was too stressful, and walking about in our house alone at night was a living nightmare.

 

A few years ago, around 2008, I suddenly woke up at 2am and thought I was dying. It is to date the most horrifying experience I have had. My heart was trying to explode out of my chest, and my mind went off on endless, wakeful nightmares. It lasted maybe 2-3 hours until I finally got some rest. It came back the next night, and the next, and the next. It was so hard on my system that I would keep thinking about these experiences during the day, as if the panic was following me (which it was, obviously).

 

After a few weeks, at which point I realized that these panic attacks were here to stay, I was put on Xanor to ease the pain. This actually helped for six months, but after that the attacks would come back regularly. After about a year I realized that the pills were actually not working, so I stopped using them. Just like that, cold turkey! I never gave it much thought, really.

 

That was when I realized that something was up. I suspected that the panic attacks could be side effects from the Imovane and Rivotril. That was also when I started to read about sleeping disorders online and collecting information about benzodiazepines and z-drugs.

 

Not in my wildest dreams had I imagined what sort of medications I had been using, and how strongly they impacted the body. In fact, it still took almost two years for me to realize that the drugs might be that cause of all my physical problems, and that they no longer had any effect on my sleep.

 

The summer before I started my taper, summer of 2011, I was in top shape. I have been an amateur road cyclist for some years now, and that summer I rode my bicycle for more than 5000 kilometers, in races up to 430 km. But I still had constant physical problems, like knee troubles, headaches, stomach aches, and lots of "overuse" symptoms from all the exercise (which I suspected was caused by my body never really healing after exercise and stress due to the drugs). Eventually the stomach aches became so bad that my doctor sent me to various (intrusive) inspections during the last year, with no findings.

 

In the fall of 2011 I visited my doctor to get my prescription renewed. My doctor was away on parental leave so I had a substitute doctor. She literally yelled at me for being on these drugs for so long. She said they were not intended for more than three weeks' use (bla bla bla bla!) and we ended up arguing about it. I defended the use and left feeling a bit shaken, angry at the doc for daring to question my need for sleeping pills.

 

The taper

That night I decided that something had to be done. I immediately cut my Imovane dose from 15 mg to 7.5 mg, overnight (my "real" prescribed dose was 7.5 mg, but I had for years managed to double-dose and get more prescription pills than I should by going to the doctor's slightly more often than I needed to...). It went well - I felt nothing.

 

After 30 days of no real symptoms I decided to halve the dose again, and had to split the pill in half. I was down to 3.75 mg of Imovane and 5 mg of Rivotril.

 

This was the day before Christmas Eve 2011. And BAM! something happened. I remember sitting at work that day and feeling incredibly stressed. It was as if all the stress of all the weeks leading up to Christmas just piled up and was locked inside my body. It's hard to even think about it now. I was literally shaking! I went home that day in a fog of stress and fear, and we left for my in-laws to spend the Christmas there. That night I woke up at 2am with the most severe panic attack I have had since they started three years earlier.

 

The entire Christmas week was pure hell. And I did not even think ONCE that this was drug abstinence talking. I had no clue. Since I was able to cold turkey the Xanor 18 months earlier, I figured it would be easy peasy now. I started reading about abstinence problems online and realized, slowly and to my horror, that I was experiencing strong withdrawal symptoms. And I had only just began! My shoulders were so stiff I can't even describe it. My back ached so badly. My entire body was so tense! It was like the feeling you have when you crack your fingers and get some small relief - only I never got relief.

 

It was about that time that I found this site. I have read so many posts here. Sad stories, happy stories, success stories. Most of all I found all the signatures touching, the ability to follow so many people's struggle and realizing that I was not alone in this. I never signed up, even though it occurred to many times. I don't really know why. Maybe I was afraid to talk about it, or maybe I was afraid of becoming addicted to misery. I am not sure. But I found real strength from reading the stories here. There's not a symptom or problem I didn't research here! So, endless thanks to all those who share their progress, and to those who support others. Your work is incredibly important to people like me.

 

I decided there and then that I would not, never, ever! increase the dosage of Imovane. Instead I actually went the wrong way and tapered to quickly. I set up a plan which let me get off Imovane in about 6 weeks, before I even started to taper the Rivotril.

 

I followed that plan to the letter. And it was horribly, horribly stupid of me. What's worse was perhaps that I did this all on my own, without doctors or psychiatrists or anyone there to help me, apart from my wife (I'll get back to that). I stubbornly kept cutting the Imovane pill in smaller parts even though I was in severe pain. And the pills really stopped working, really fast. Right after Christmas I stopped sleeping at all. I suffered major, total insomnia for the entire month of January 2012. I remember sitting up at night watching TV series like True Blood and hating them because I was unable to focus, concentrate, care. I was in a constant haze of tiredness and anger, and a sort of round-the-clock disconnectedness. I lack good words for it, really. It was the darkest month of my life. It was, literally, 31 days of night.

 

When February started, I suddenly experienced a window. I didn't really sleep, but my body relaxed a bit and some of the worst withdrawal symptoms gave me a break. I managed to take my two daughters (8 and 11 at the time) out on a weekend ski trip in a local woods. It was a really nice break from the eternal darkness I experienced around me. But the window didn't really last very long.

 

That week I was off the Imovane. I don't remember how it felt, really. But I was sick, tired, angry - and I still had the Rivotril to get rid of.

 

I figured that since I was already in a lot of pain, and since it was becoming the norm, I might as well keep at it. But this time I studied the  Ashley manual. I printed out the schedule for tapering off from Rivotril by way of Valium/Diazepam, and brought it to my doctor. I got an appointment with the same substitute doctor as the last time, and I was so afraid that she would just ignore my request for Valium, after all she probably considered me an addict by now. Well, I steeled myself, brought my printouts and went to see her. She was shocked! Yes! Shocked! that I had managed to get off Imovane without help, and in such a short time. She surprised me by saying that I should be really, really proud of myself. She had never heard of anyone coming off it so fast. I told her about the Ashton manual and showed her the printouts, and she agreed 100% to go for the plan. She prescribed Diazepam and gave me some encouraging words.

 

I actually think that this may have been a turning point for me. I was off Imovane, but the withdrawal symptoms were really strong. Horrible insomnia, daytime nightmares, anxiety and fear were constants. I remember coming home with the Diazepam and placing the plan on the kitchen counter to see how long I'd have to follow the plan. And I had just 8 weeks to go!

 

If I had been in my right mind, and maybe if I had had better, more experienced counsel, I would never have gone off these meds so fast. In effect I almost cold turkeyed. But I had no idea! I just took one day at a time and moved on from there. My resolve to never increase the dose back to a higher level worked. I simply planned on reducing the dosage every 4 days according to schedule.

 

To this day, I consider one of my greatest successes to be this: That I, in the heat of battle, with endless withdrawal symptoms, actually had sleeping medications in my closet, without increasing my dose. I could have taken a higher dose at any given day and (in theory) gotten some real sleep. I never did it. I followed my plans without giving in. It required an extraordinary amount of willpower and stubbornness. But I managed it! I really, really did it. And eventually I threw all of the medication out of the house and never looked back.

 

I remember the final two weeks of the taper. In the end the doses of Rivotril were so small that the pill couldn't really have an effect. Yet I remember standing in the bathroom in the morning after a really bad night, thinking about licking a pill just to see if it would ease my pain.

 

During the 4 months my taper lasted, I felt sick every day of the last 3 months. Yet it was not until the last day of the final taper that I got REALLY sick - I ended my taper with a nasty bronchitis...just to top it off, I guess. I had a severe infection in my lungs which knocked me off my feet completely. And the mixture of high fever, constant nightmares and insomnia is indescribable. I believe I was so worn out after the taper period that there was no resistance left in my system.

 

My last day on benzo was March 27, 2012, after four months of tapering.

 

Post taper

After the taper, and after three weeks in bed, I was extremely weak. Just going out of the house was a struggle. I really enjoyed the brighter, longer days of April (I live in Scandinavia where winter is looong and dark). I decided that I had to get back in shape. I had cycling races to attend to, even if I had already missed the first races of the season and I was in no shape to ride. I began by simply walking around my neighborhood for as long as I could, in order to get my system up and running. Then after a few weeks I decided to give my system a jolt. I gave myself 5 days to cycle 300 kilometers, by doing 20, 40, 60, 80 and 100 km rides. I ended up completing it and even doing an extra 20 km. It was an immense victory for me!

 

I didn't really get in shape at all in 2012. Even though I kept cycling, I missed more workouts than is normal for me. I dropped out of two races. I stayed away from group rides because I was in no mood to be with people. But most important of all was that I kept exercising, and I kept racing. I kept in touch with my cycling buddies as much as I managed.

 

And when it was all done and over with, I realized I had done it all without missing a SINGLE DAY of work until I got caught by bronchitis! It simply did not occur to me during my struggles that I should not go to work.

 

In the months following the successful end of my taper, things got gradually better, physically. The tension in my body faded. My headaches disappeared! But my stomach did NOT improve. Nor did my restlessness. Huh! I still didn't sleep much, and I still couldn't close my eyes without feeling a rush.

 

The results from the stomach investigations my doctor had ordered showed nothing. I decided to SWITCH doctor since I figured I needed a clean start. The new doctor decided I might have IBS and asked me to research it. In August, four months after my taper, I began a new ordeal. I started on an exclusion diet. No milk, wheat, sugar etc for weeks, then slowly add things back. I lost 5 pounds in three weeks.

 

And - more mysteriously - I slept like a log!!! The rush was gone! I had my first full night's sleep without medication in over 12 years!

 

But then we added milk back. Bam! Big troubles. Woke up with major stomach pain. Turns out I am lactose intolerant! A blood test confirmed that I have the genetic marker for it. So it's always been there.

 

And then a week after - added wheat back. Bam! The rush was back! The sleeplessness was back! And more incredible - the panic attacks were back!

 

We did more tests (my new doctor is a thorough lady!) Turns out I am gluten intolerant! We removed all gluten from my diet, and the sleep came back. The restlessness and rush disappeared.

 

So, after so many years on medications, why did not ONE doctor - not a single one! - even CONSIDER that maybe my insomnia was caused by something? Instead they put me on endless prescriptions for benzos and z-drugs without ever looking back.

 

I took my oldest daughter to visit friends over in Cleveland for ten days in October. The time zone difference from Scandinavia to EST is 6 hours, and it really, really shook up my system. But it was even worse coming back. I spent THREE WEEKS battling a jet lag from hell. So there's no hiding the fact that I have taken some major blows during the past year, thanks to the taper.

 

I am now 9 months out of my taper. Life has really improved. I still feel tired after the ordeal. You may think that 4 months' worth of taper sounds like nothing, and you may be right compared to what some people go through here. But my choice to go off so fast was incredibly misguided. I wish I could go one year back and do everything so slowly that I never could have gotten those withdrawal symptoms.

 

But here I am. It's a new year. It's both hard and wonderful to think that exactly one year ago I was in the middle of the most horrible ordeal I have ever been through. But I survived! I succeeded! I came off the drugs, I sleep well, and I am stronger than ever.

 

The biggest remaining issue of the benzo years is the final insult to an athlete: the benzo belly. It comes and goes, and causes a weight gain of up to 6 pounds. Now it's been here for weeks with no signs of wanting to go away. But it's a minor problem, really. I just have to buy some new pants.

 

Things I learned

I really, really understand why people struggle with drugs, alcohol and other stimulants. Respect to all who find it very, very hard to come off them.

 

I should have talked to someone. It was really, really, REALLY hard to do this more or less on my own.

 

Don't cold turkey. Don't. Really, don't.

 

Talk to your doctor. If s/he don't listen or won't help, find another if you can.

 

Being up at nights is not necessarily a sign of sickness. It is human.

 

I have extreme willpower. I had no idea! But now I do, and it's being put to good uses.

 

One more thing

I said I would come back to the issue of my wife. It may sound like I was all alone during my many years of being under the spell of sleeping aids. But my wife has been there, every single day, and supported me. She was the one who told me that it would get better. She was the one who comforted me when I cried, physically exhausted for lack of sleep week after week, long before I ever thought about quitting the pills. She kicked my butt during the entire taper.

 

In the end, I think I did it for her as much as I did it for me. If I say that I have willpower, it is because I have learned how to act like it from her.

 

If I hadn't broken the spell of the benzos, who knows how long it would be before she eventually had had enough of me?

 

Thanks!

To all the people who have helped me here at BB, without even knowing that I looked over your shoulders: Thank you! Keep it up. For every one of you, there are probably many, many more like me who don't sign up for various reasons. Be there for them, too!

 

And I hope that my story can give you a tiny bit of hope if you need it. You can do it too!

Hello tormodg,

 

Thank you so much for posting your story of survival and hope.  I know there will be others looking over your shoulder and reading your story to receive encouragement and validation that healing will take place.

 

You have a wonderful wife, my husband has been my rock throughout this entire process as well.

 

Enjoy your life and your bike rides, I ride as well. I used to mountain bike a lot but in my more mature age I have retired to just touring these days.

 

pianogirl

Thanks, pianogirl - I read your story too, I almost cried when you found a doctor who could help you. It's amazing how long these struggles can be. But oh so good that they do come to an end.

Hi, what an amazing success story of courage and hope, thank you for sharing that with us all. I am still struggling 5 months post taper with insomnia after many years of benzos for sleep and I am hoping one day that I will find sleep again until then I just look at all the things that have improved for me, especially my mind, but also my body, I was wracked with joint pain for years and although I do have arthritis my pain is now almost non existant, I have not taken a Tylenol for months which is so totally amazing for me.

Enjoy your new improved life without benzos and safe riding.

Ladygrace12

Thank you, Ladygrace12, and I feel your pain! It's good to hear that you are able to take comfort in the good things and that your joint pain is subsiding. Congratulations on your taper and your courage to stay off benzos!

Hi Tormodg,

 

Amazing story, not long at all, really enjoyed it !! Your willpower is truly inspiring... and just points out how much exercise and proper diet can have an impact on one's recovery.

 

Similar to you, I kept running (not bicycling since I was in athletics until my early 20s, so this appealed to me more ) and trying to stay in shape throughout this entire experience. It definitely helped and although a lot of symptoms disappeared, insomnia is still my very bad issue. I take care of what I eat but I'll definitely look up for a gluten and dairy free diet for a couple of weeks too and see if it helps.

 

Congrats and enjoy your new benzo free life. You truly deserved it.

 

C.

All I can say, Toromodg, is Wow! Reading your story was unbelievably moving for me. I'm really, really glad you posted it and I wish you all the best

Hi Tormodg,

 

First of all congrats on becoming benzo and z drug free.  Thank you for writing your story.  I'm so happy for you.  You sound like you have a very strong will power and drive, fine things to have in life.  What a great example this will later be to your girls, a great example of pushing through a very hard time - times in your life and surviving - flourishing from it.

 

I know your healing isn't finished, you have even further ways to go feeling even better than you do at this stage. 

 

May you have continued biking trips, getting back to riding with groups if you so desire.

 

Please come back and keep us posted on your progress.

 

I also have a wonderful husband that has been there for me 24 / 7. He is the epitome of wedding vows and a wonderful example for our 3 children to see of a spouse standing by their love one.

 

Best be with you,

Sally 

Thank you for posting your success story.  It means the world to me and others to read your story and know that you are feeling so much better. 

Thanks for the long post.  Beautifully written.  I teared up at the end because I am so happy for you!  Congrats!

Remarkable story. It gave me tears and goosebumps. I am so happy for you that you are doing so well!

Thank You for the inspiring story..    I'm almost 5 months off benzos and I can totally relate to many of your struggles..    After my taper and being off for 4+ months -- On December 21st, 2012 at 54 years old, after uncountable doctor and hospital visits, I was finally diagnosed with Celiac disease and have been on a gluten free diet since then... How could so many specialists overlook such a thing..  .. I'm now back in the gym (lightly)...  I wish you great success and thank you again for you story... BB2

Wonderful post, thanks for taking the time to put this down for us.

 

I am one month off Klonopin and having difficulty sleeping. But worse, really, is the pain in my joints which keep me from exercising like I used to. I can swim, but my knees are too painful to cycle.

 

How is your physical pain now?

 

I am hoping that things will get better as the months go by. I have much better mental clarity and my vertigo/imbalance is fading as well. Having lived through a year of brain-fog I am delighted to have my faculties closer to normal.

 

-M

I kept running (not bicycling since I was in athletics until my early 20s, so this appealed to me more ) and trying to stay in shape throughout this entire experience. It definitely helped and although a lot of symptoms disappeared, insomnia is still my very bad issue.

 

I think exercise may be one of the things which helped me succeed. You learn so much from regular workouts, like discipline, goalsetting, pushing yourself etc. During my taper I managed to go to almost all club workouts (I went to 3 out of 4 every week unless I was completely worn out) and that gave me a strict routine to adhere to.

 

Keep it up, C! Insomnia followed me for months after the taper was completed. Good luck if you choose to investigate any food intolerances, it has changed my life forever.

All I can say, Toromodg, is Wow! Reading your story was unbelievably moving for me. I'm really, really glad you posted it and I wish you all the best

 

Thank you! And good luck with your taper. You will get there!!!

May you have continued biking trips, getting back to riding with groups if you so desire.

 

Please come back and keep us posted on your progress.

 

Thanks a lot, Sally. I decided to start this year with a bang! and have so far done 18 indoor cycling workouts in 21 days! My rationale is that if I could spend so much energy on getting off meds last year, it's really worth spending the same amount now to heal and get really fit.

 

I still don't exercise with my club, because the workouts are too late in the evening which makes it really hard for me to fall asleep. I am however looking forward to the outdoor season starting around April here in Oslo, Norway, so that I can attend regular group rides once again! 

@[No...]

 

Thanks for your kind comments. Best wishes for your continued strength and luck (and to your husband, 4lovofpat!).

I was finally diagnosed with Celiac disease and have been on a gluten free diet since then... How could so many specialists overlook such a thing..

 

It's hard to understand, isn't it? I still experience doctors who scuff at the suggestion that food and anxiety/sleep are linked somehow. Yet people like you and I have to find out the hard way.

 

Best of luck with your new diet. I find it easier to cope with mine every day.

I am one month off Klonopin and having difficulty sleeping. But worse, really, is the pain in my joints which keep me from exercising like I used to. I can swim, but my knees are too painful to cycle.

 

How is your physical pain now?

 

After 3-4 months most of the "strange" pain, like stiff joints, aches which mysteriously moved around etc went away. Lately I feel better than ever. I think it has taken me all this time to simply get rid of the meds both physically and mentally. So stay in there! Things will improve and you will feel great again.

 

What has surprised me though is that I am experiencing some medical issues which have become stronger after I got off the meds. It seems the meds have helped mask some things which now are surfacing. It seems I may have prostatitis, which is causing no end of trouble (particularly because I am a cyclist!), and it must have been around for years. But finally I can single it out and get real help for it.

I am so pleased for you Tormodg and your story has inspired me, although i am so very scared of what will happen at the end of my taper...Congratulations and enjoy your Benzo free life !! Harrieta . x

Bump

What a great story!  I needed this, and I am sure many others did as well.  Life is a blessing..