my cold turkey experience

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History

My underlying condition is sleep apnea related insomnia, and my trouble sleeping while using the C-pap system. 

 

Health History

I am a white male, 51yrs old and have never had any serious medical issues until recently. I have always strived to take good care of myself. I never eat junk food, soda or candy. I eat very little refined sugar. I prepare all my own meals from fresh ingredients and I take naturally derived vitamins. I have never smoked. I exercise regularly and I meditate and do yoga once a day.  I have always tried to get at least 7 or 8 hours sleep. And before my knees gave out I used to run 5 miles a day.

 

I first started taking 30mg of Temazepam for severe sleep apnea related insomnia in March of 2010.  At first I really needed the sedative to sleep; I had severe insomnia and I had difficulty tolerating the C-Pap sleep mask system. However, the 30 mg dose caused side effects that kept me from returning to work (dizziness, fatigue etc). After a couple of weeks I went down to a 15mg dose and returned to work. I am a long haul delivery driver in and I work the early shift, 4 am to 12:30 pm. My normal weeknight sleep schedule is in bed by 7 pm and I awake at 2:30 am. On week ends, I frequently travel 90 miles to visit my family in a nearby city. It’s a difficult schedule to keep because of the change in sleep patterns on the weekends.

 

After a couple of months, I was still having trouble tolerating the sleep mask and asked my Ear Nose and Throat Dr for other options. He recommended surgery to remove my adenoids and tonsils etc. however, my ins co. denied the surgery as medically unnecessary. As a result I continued taking the benzo due to my aversion the c-pap mask system.

 

Unknown Side Effects

Due to the severity of my original apnea and insomnia, I was so run down and afflicted with sleep apnea symptoms, I was unaware of the side effects of the benzo that were creeping up on me. Several symptoms of severe insomnia are similar to benzo side effects. (memory loss, fatigue, depression etc.) At first the med helped me sleep, which I sorely needed. However, after several months, I unknowingly began experiencing the benzo side effect symptoms including, insomnia, short term and episodic memory loss, fatigue, overall physical weakness, digestive problems and depression.

 

After several months of taking the drug almost every night, I was building up resistance and the drug started to lose its effectiveness as a sleep aid. And although I didn’t realize at the time, I was in the early stages of benzo w/d syndrome. Trouble is, whenever I tried to go of the med, I found myself unable to sleep, so I would resume taking it. I tried throughout several months to take the med only as needed, like on Sunday night, but I found the longer I took the drug, the more I needed it. And some nights I would take a double dose just so I could fall asleep. I realize now that I was suffering from benzo tolerance withdrawal side effects, and insomnia caused by taking the drug for longer than the recommended dose period.

 

 

 

Digestive Trouble

 

Additionally, soon after I began my Temazepam treatment, I started having severe intestinal problems. I saw my Dr. and was diagnosed with diverticulitis (an infection of the large intestine). A colonoscopy confirmed that I indeed have diverticuli (small pockets in the intestinal wall), which can become infected causing diverticulitis. At no time, did my doctor assess the continued use of the Temazepam as a probable cause. I followed the recommended diverticuli diet (high fiber, no nuts or seeds etc.) but continued having intestinal trouble. I went through several bouts of diverticulitis throughout the year.  Soon after I stopped taking the drug, my intestinal problems began to clear up. It is my opinion that due to my diverticuli condition, the side effects of the benzo caused my bouts of diverticulitis. 

 

Benzo Withdrawal

 

When I finally realized I was experiencing benzo withdrawal, I asked my Dr. for a low dose tapering, to get off the drug. He gave me a 7.5 mg dose the lowest available for Temazepam and suggested that I adjust my dose to every other day for a week. Then every third day for a week etc… However, I found that whenever I skipped a dose, I barely slept at all. He suggested that I just keep taking it, but all my research told me that I needed to get off this dangerous drug.

 

I also told him that my intestinal trouble cleared up when I stopped taking the drug and that in I my opinion, the drug was making me sick. I asked my Dr if there were any other options available, other benzo meds with lower doses but he said it’d be like giving you gin to get you off vodka.

 

 

I’m certain that my Dr was unaware of the serious side effects of benzo w/d, and thought I could just tough it out for a week or two and I’d be fine. As I write this it is May 5th , am now in my 2nd month of benzo w/d and I am still unable to get any kind of restorative sleep. 

 

 

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Sleep Diary

 

From March 6th through April 26th.

 

It’s difficult to say for sure but I think my last dose of benzo was on Sunday, March 6th. Since I stopped taking the drug, I have had severe insomnia. In the beginning, my entire nervous system seemed like it was on overdrive 24 hours a day. I felt like I just had 5 cups of coffee at all times. It is much worse at night. While trying to sleep, I felt like I was being shocked with a strong electrical current every 5 seconds. During the day, I am light-headed and dizzy, and sometimes I feel faint. Exercise makes these symptoms worse. At night I sleep only 2 to 3 hrs a night in 20 to 30 minute increments, and sometimes not even that. I wake exhausted and I feel dizzy, weak, fatigued and disoriented throughout the day.

 

I became increasingly concerned with my condition and began detailed research of this drug. I saved and printed out several physician peer to peer journals regarding benzo side effects. I had already had several conversations with my Dr. regarding the use and side effects of this medication and my desire to stop taking it. He informed me that he had no other remedy to relieve my withdrawal related insomnia. He continued to say it would be like giving me gin to get off vodka. He seemed oblivious to the fact that I was having such a bad reaction and even suggested that if I was having trouble sleeping without the drug, I should just keep taking it !

 

My condition soon affected my ability to safely perform my job. I found myself falling asleep behind the wheel in my delivery truck. I informed my boss that I was having trouble staying awake, and that I felt that I was a hazard on the road. I showed her some of the documents I had printed out and she agreed that I shouldn’t drive until I recovered. That same day I saw my Dr. and he proscribed Trazodone (a SSRI). I tried this drug for a couple of nights. It still took me 3 or 4 hours to fall asleep and then I slept fitfully for only a couple of hrs at a time and then I’d be awake for 3 or 4 hrs. Then at around 4 or 5 am, I would again fitfully sleep till 7 or 8 am. I awoke feeling exhausted, dizzy and disoriented throughout the day. The trazodone didn’t really help me sleep that much better and the side effects made my daytime symptoms worse. So I discontinued taking it. 

 

The following week I again saw my Dr, and he then proscribed Amitriptilyn, another SSRI. This drug also took 3 or 4 hrs to work, but I actually slept through the rest of the night. However the side effects of the medication caused me to feel delirious throughout the rest of the day. I felt like I was walking around in a daze, like I did when I once had a concussion.

 

Until I can find a sleep aid that actually helps me sleep with out debilitating side effects, I have no choice but to go cold turkey until the withdrawal symptoms subside and my GABA receptors return to normal.

 

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April 27th:

Last night I was so exhausted from lack of sleep, I decided to take another Amitriptilyn. I went to bed at 9pm and was still awake until around 1:30am. I’m not sure if I really slept but I was unconscious until around 7am. I awoke feeling groggy, and all day, I felt like I was a walking zombie. I can’t function during the day while taking the antidepressants my Dr. proscribed. And I can’t sleep without taking something, so I am caught in a dilemma. If I take the antidepressants, I get some sleep but I’m unable to function during the day. If I don’t take anything, I hardly sleep at all. 

 

I have concluded that after almost 6 weeks since my last Benzo dose, I can no longer try to keep my regular sleep schedule.  My attempting to sleep during my regular sleeping hours, is actually counterproductive to my recovery. Lying in bed for hours at a time trying in vein to sleep, has only increased my sleep anxiety, and that the best coarse at this time, is for me to sleep as I am able. Over time, not getting the proper amount of restorative sleep, can have devastating effects on the body. It’s important that I to try to protect my overall health. I will continue to eat only healthy nutritious food, take natural vitamin supplements, get moderate exercise and sleep as I am able.

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During the remainder of my recovery, I will continue to update my sleep diary. I hope that this information maybe helpful for others trying to get off this dangerous drug. I am deeply worried by my Dr’s lack of information regarding the harmful effects of benzo’s. Even as I came to him again and again with complications, he was unwilling to even acknowledge that I could be having a problem. I was forced to do my own research, print it out, and bring it in to his office. It was almost as if he was hoping I would quietly go away. In my opinion, my Dr. was negligent in proscribing this medication for such a long period of time. I am currently in my 4th week of disability. Last year I lost almost 3 months of work, along with countless hours of suffering and aggravation, due to the side effects of this dangerous drug.

 

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May 2nd

Last night I went to bed at 12am. Keep in mind that my normal sleep schedule is 7pm, so for me that’s like staying up till 5 o’clock in the morning. I tried a new natural sleep aid, however I was still awake at 2am. I may have drifted off to sleep at around 2:30 or 3am, but I can’t be sure. Again I fitfully slept in 20 to 30 minute increments. I’m not sure if I’m getting any REM sleep at all.  I awoke at 8am, still feeling tired and groggy. This is going on the 4th week of my being off work. I made a Drs appointment for 9am tomorrow.

 

On a positive note, my digestive system is completely back to normal. I am eating nuts and seeds again with no I’ll effect. I wonder if any studies have been done regarding the use of Benzos on people with intestinal diverticuli. My guess is that others have suffered the same affect as me. How could I be the only person with diverticuli that has had a bad reaction to this drug.

 

I am slowly starting to feel a little better. I’m getting past the severe benzo w/d syndrome side effects, but I’m still only getting a combined 2 or 3 hours of sleep a night but with little or no restorative REM sleep.

 

Today I’m going to try to get some moderate exercise. Ride my bike for 20 to 30 minutes and maybe go to the gym.

 

I did get out and ride my bike for 20 minutes today. After my ride, I became fatigued and tried to nap. With the thermostat set at 70, I laid down and tried to sleep. Again I fitfully slept in 20 to 30 minute increments for a couple hours, but I had the chills the whole time, which is unusual.

 

Not having more than a couple hours of fitful sleep a night for more than 2 months, is starting to take it’s toll. My constant level of fatigue is increasing and I am seriously concerned for my over all health. Although my blood pressure, heart rate and weight are only a little above normal, I’m afraid that I might be susceptible to a more serious illness.

 

 

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May 3rd

Last night I again stayed up until 1am. In the hope that alcohol may induce some kind of much needed sleep, I reluctantly drank 3 or 4 shots of scotch, with little effect. I was still awake at 3am unable to sleep, and again, when I finally dosed off, I only fitfully slept in 20 to 30 minute increments for a couple hours. Knowing I had a 9am Drs. appointment, I set my alarm for 8am. I awoke completely exhausted and got out of bed at around 8:15.

 

I arrived at 8:50 for my 9am appt. I brought all my benzo research and my sleep diary with me. I explained that the 2 SSRIs that he proscribed, did little to help me sleep and that the day time side effects were to debilitating too bear. And that my on going inability to sleep was severely affecting my health. He suggested that I actually go back on Valium and do a low dose tapering. I explained that I was very reluctant to go back to a drug that has caused me so much grief. For those who don’t know, a low dose taper can take 6 months to a year or more, and would require that I go back on a drug that caused my diverticulitis. I asked again that my Dr. help me through this using a barbiturate / benzo withdrawal program and he refused. He referred me to an out of network neurologists.

 

 

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I’ve been fortunate to have my family to help through this experience. My wife, yes we are still married, has been and continues to be my anchor to the real world. My parents are still around, although they divorced many years ago, we still keep in touch. My mother is a Dr. of psychology, although she never practiced, she got her PhD in child psychology. I sent her links to some of the benzo research I found, and although at first she had her doubts, after reading up on the topic she gets it. My Dad is a retired attorney and he was astounded when he realized what I was going through.

 

My mother suggested I try marijuana, and pointed out that it is proscribed to relieve insomnia in states where it’s approved for medical use. Now I did partake back in the day, and yes, I did inhale, as Obama so eloquently put it, “that’s the whole point isn’t it?”

 

So here I am a middle aged man, being told by my PhD mother to, “smoke a little weed it might help relax you.”

 

I won’t go into the details here, but I decided to take her advice and did acquire some, pot, hush….hush. Not having smoked in more years that I’d like to say, I tried some about 4 hrs before my normal bed time. I wanted time to give the psychological effects time to wear off. And yes the pot definitely did help relax me; weed is so much stronger today than “back in the day”. But I’m not used to the strength and I still couldn’t sleep any better. And even if I had slept, I’m not sure, in my current emotional state, I could take the physiological effects for long, so marijuana was not the cure I had hoped it would be.

 

When I started this journey into the unknown world on benzo w/d syndrome, I had no idea how insidious this drug is. In my extensive research, I have yet to find a documented case of a patient going cold turkey. It’s now been 98 days since my last dose and although my symptoms are slowly decreasing, I have no idea how long they will last. The physical and psychological effects are taking their toll. My overall condition is worsening daily.

 

I’m afraid I might have to go back on the drug and do a low dose taper to get off of it.

I’ve talked it over with my wife and both parents and they agree, that might be the only way.

 

Sunday May 8th

In a desperate attempt to avoid going back on the benzo to do a low dose taper, I decided to try a combination of remedies and perhaps find an alternative. After trying a little pot a few nights ago, I didn’t sleep any better the first night, but the sedative after-effects of the pot stayed with me the next day. So I decided to try the pot once again in a smaller dose. I also began drinking “nighty nite” an herbal tea during the day. I thought maybe the cumulative effects of the pot, and tea might calm my nervous system enough to allow me some much needed sleep. An afternoon nap confirmed my theory and I was able to sleep undisturbed for a couple of hours on Saturday afternoon (May 7th). Tonight though, I’m going to try a combination of remedies, both natural and pharmaceutical. I’ve been taking melatonin for several years now. Due to tolerance, last year I doubled my dose from 5 mg to 10 mg. I decided for tonight’s experiment, ( yes, sometimes I feel like I’m part of an experiment gone wrong)  I would increase the dose to 20mg.  I also take a natural cal/mag/zinc every night and have been taking an herbal sleep aid, “calms forte” for the last couple of weeks. Earlier my Dr proscribed trazodone, an older SSRI, used now as a sedative. When I first tried it, I didn’t help me sleep all that much better, and I didn’t care for the side effects, (a feeling of disconnectedness and loss of libido). But I thought as a last resort, maybe a combination of therapies might break my cycle of chronic insomnia.

 

So here’s my home sleep remedy.

 

1 cup of detox tea in the morning

Drinking lots of water

3 to 4 cups of “nighty nite” tea throughout the day.

A small dose of pot at around 3pm

No alcohol or caffeine or sugar 

20 mins of moderate exercise (walking or bike riding)

Yoga and meditation at various times throughout the day

 

At bed time:

1 1000mg cal/mag/zinc

4 - 5 mg melatonin (20mg)

2 “calms forte” a natural sleep aid

2 naproxen

1 – 50 mg trazodone

 

At around 9pm I prepared for bed, taking the above combination. At 9:30 totally exhausted at I laid down and read for 10 minutes or so. I slowly felt the sedative effects of my home remedy take effect and I drifted off to sleep. I slept soundly through the night not even waking to pee. When I finally awoke, I was astounded to find I’d slept until 1:30pm Monday afternoon! I was asleep for almost 15 hours. I was still feeling groggy and disoriented throughout the day, but I did feel better. 

 

I continued this process and slept though the night for a couple of nights, (Mon, Tues) sleeping for at least 8 to 10 hours.

 

After getting some much needed sleep, I am slowly starting to feel better.

 

Beginning on Thurs night, I’m now only sleeping for only 4 hrs at a time, 10pm to 2:30am. It’s better than before, but I still wake with the benzo w/d hyperactive nerves. Rather that get out of bed I lay quietly trying to get back to sleep. After a couple of hours I drift off to sleep again, but I’m not sleeping through the night as I did in the first few nights. And I’m still feeling light headed and disoriented throughout the day.

 

 

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June 16th

It’s been several weeks since my last entry. Although I am sleeping better, I still wake several times a night with the benzo hyper nerves. It’s not nearly as bad as it was, but I am still not able to sleep through the night. It’s now been 90 + days since my last dose of benzo. There is light at the end of the tunnel. I have good days and bad. I spent the week end with my wife and we went for an early evening walk. I soon became dizzy and fatigued and we had to cut our walk short. So although I’m getting better I still have a ways to go.

 

I hope that sharing my experience will help others get through this difficult period. I know for me it has been a scary and lonely experience. But there is hope. Like me, you will get through this. Just be patient. Develop a plan and stick to it. I had no choice but to go cold turkey but I wouldn’t advise anyone else to do this. I am fortunate to have an excellent insurance and disability plan through my employer. Without that I would be homeless.  I could go on all day about the need for a national health policy in this country, but that discussion is for another place and time.   

Good Luck !

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Bobi,

 

So glad to hear that you are starting to feel a little better.  I don't have much input for you about your withdrawal symptoms but I do have a recommendation on the C-pap.  I didn't take well to the sleep mask and had an oral appliance made for me that keeps my lower jaw forward when I sleep and keeps my throat open. [nobbc]http://www.somnomed.com/Products/The_SomnoDent_sup____sup__MAS_Product_Guide_.aspx[/nobbc]

 

Although I was fit for this by a dentist, it was covered under my health insurance.  I have used it every night for several years now and swear by it.

 

I hope you continue to feel better every day.

 

Warmest regards,

 

Kelly

 

Deactivated link to commercial site per FUM

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I'm sorry you're going through all this.  I also was pretty much c/t from temazepam.  I had been taking the same dose as you and experience interdose withdrawal prior to the c/t.  You may want to read my progress log.

 

Be careful with the naproxen (affects GABA) and the sleepy time tea (chammomile affects GABA).  I would avoid those.  I would also avoid the alcohol for sure.  Alcohol affects GABA.  All these drugs are not allowing your receptors to heal and will keep you in withdrawal longer.  Also, I'd avoid the marijuana and trazadone.

 

I was given trazadone to help me sleep and it made me feel awful.  The best med that helped with sleep was hydroxyzine (which doesn't affect GABA); however it did have some other side effects. 

 

The best thing you can do is to stay off of everything at this point and allow time to heal you.  After I stopped ALL medication (including OTC), I started feeling better by 5 months.  I am now over 14 months benzo free and am doing quite well. 

 

So sorry the doctors don't understand.