Please give me hope I'm begging you....

I'm almost 7 months out from the benzos and 11 months out from the cipro reaction. In the last four nights I've only gotten a TOTAL of 6 hours of sleep. Nights are torture for me. I go to bed feeling fairly relaxed and calm. Either I fall into a light sleep and wake up after an hour or I don't fall asleep at all. As the hours go by then come the adrenaline rushes and akaneshia.

 

I am absolutely miserable, sick and frustrated. Could this all still be from the benzos? Could it be that my progesterone is low (I just had it tested).

 

I don't know how much longer I can take this. It seems like even people with severe symptoms see a gradual lessening of them over time. I feel like I keep getting hit with waves that are worse and worse. I'm in such a deep, dark place. I see no hope of this ever changing....I see NO light at the end of the tunnel.

 

My hair has turned almost completely gray in the last six months (I dye it blonde to cover it up). I have deep black circles under my eyes that go almost down to my cheek bone that makeup won't cover.  My muscles are weak and twitch like crazy. My anxiety is SKY high. I'm very depressed.

 

The only reason I don't check out of this world is because of my daughter. And then I get angry and resentful that I have to keep fighting.  I daydream all the time about finding medication that would just knock my lights out and let me sleep for an entire day.

 

I can't nap either. My body craves sleep but it just won't happen for me.

 

Someone please give me hope!!!!

 

Thank you,

Jittery

I'm so sorry you're suffering.  From what I've read here there are others who struggle even after being a year out.  I know this is really hard and so scary.  Some say to look at all the  symptoms as a sign of your body healing.  I hope you will find relief soon.  Hang in there.

Hi Jittery,

 

I feel for you because I'm experiencing very similar symptoms.  I still only sleep 2-3 hours a night with an occasional night of 0-1 hour. 

 

I don't care what anyone says, this level of sleep deprivation has to be dangerous.  My anxiety has gotten worse over the 7 months I've been off and unable to sleep--in fact I've never experienced this kind of anxiety.  Feels like I'm on a permanent rollercoaster ride.  I'm severely depressed from having to live with this level of anxiety every day.

 

I've been wanting to post about what's happening with me, but my concentration and focus are so poor that it takes all I have to write a few sentences.  Sometimes it gets so bad that my mind goes completely blank when I'm talking to people and I can't get any words out.  I'm starting to worry that I have early onset Alzheimer's or something.  It's truly frightening.  I also get these weird sensations in my head like it's a block of cement--don't know how to explain it but it's really scary.

 

I've stopped exercising because of exhaustion.  It was helping but I just can't do it anymore.  I'm concerned about my heart and blood pressure as well. 

 

I'm going to see my GP today because I'm desperate and worried about my health.  She knows more than most doctors about benzos, but I fear not enough and that she'll just think I'm crazy or tell me to have a sleep study which is useless.  I'm going to talk to her about some sort of brain scan because I'm also having horrible migraines once a week or so along with constant nausea and loose bowels. 

 

I also intend to talk to her about Deplin for the depression.  I can't take SSRI's and my psychiatrist thinks because I can't sleep that I'm bipolar, so I tried Lamictal and lithium (on separate occasions), and both of them made the headaches worse.  Personally I don't think a psychiatrist can make a diagnosis until I'm off the poison for at least a year.  My psych also suggested I take a small dose of valium to help me sleep!  After all I went through with the taper he had the audacity to suggest benzos--unbelievable.  What are these psychs thinking?!

 

I'm so sorry that you're suffering, but believe me I get it.  I didn't know it was possible to feel this bad and still be alive.  I'm beginning to fear that after 7 years of chronic benzo use that my brain has permanently re-programmed itself and I'll never get me back.  I'm beyond scared.

 

I'll let you know how I make out today at my doctor's.  Please hang in there and know that I'm thinking of you.  Please try and do something nice for yourself to today, I know I forget to do that when I feel really wretched. 

 

Mal

Hi Jittery,

 

I saw my GP this afternoon and am pleased to say that she really gets the benzo "thing."  She told me she has helped a number of people come off of them.  She also said that sleep is not the luxury our culture seems to think it is.  We CAN do serious damage to ourselves if we go prolonged periods without sleep.  This isn't to scare you, but more to help you see why you and I feel so incredibly awful.  I have all the symptoms you mentioned--muscle twitching, adrenaline rushes, etc. plus the other things I mentioned in my post.  Just so you know, you're not crazy--just VERY sleep-deprived.

 

Here comes the touchy part.  I say this because I know there are a lot of people out there who will have a fit when I share what my doctor recommended, but I think she could be right.  She said the problem is that there is so much anxiety surrounding sleep for me now that I need something to flip the switch and get me out of that nasty groove I'm in.  She prescribed a really small dose of Ambien taken 3x a week and no more to prevent dependency, but to allow me to sleep enough where that cycle gets broken.  I'm to do this for one month and then she wants to see me to assess my progress.

 

I know this is not the answer for everyone, but we all have to do what feels right for us.  Living on 2-3 (sometimes less) hours of sleep a night for 7 months has taken a major toll on my health and to continue like this would be downright masochistic on my part.  I'm a non-functioning vegetable at this point and that depresses me, and if I don't do something different my situation's not going to change.  I was feeling better earlier in my w/d and my doctor said that's because of the cumulative effect of sleep deprivation.  If I just get some sleep under my belt it could be just what I need to help me continue my recovery. 

 

I have tried every herbal, homeopathic, natural supplement, tea, etc. out there for sleep and NOTHING has touched my insomnia.  I also eat a very healthy diet, along with no caffeine, alcohol, sugar or white flour.  I've done everything I possibly could to bring on sleep.  I'm beyond desperate at this point, so I'm going to give this a go and be VERY careful with how I'm using the Ambien. 

 

I'm not saying that this is the route you should take, but for myself I can't hang on indefinitely like this.  I've heard of people going a year or more with severe insomnia and I can't imagine it because it gets worse over time.  My health is being affected in frightening ways and I refuse to do this to myself anymore.  I'll keep you posted on how this is working for me.

 

Jittery, I really hope you find a solution to this relentless insomnia nightmare--some way of taking care of yourself while not jeopardizing your recovery.  I guess that's what I'm trying to do here, reach some sort of compromise.

 

All the best,

Mal

 

 

Hi Jittery,

 

When I went cold turkey a year ago, for the first 30 days I did not sleep for one hour, how I survived, I have no idea.  It took almost 8 months before i could actually sleep for 3 hours straight, then it progressed to 4, and then five.  Now at a year off i am sleeping 6 or 7 hours a night.

 

Having experienced first hand,  the anguish and mental torment of not sleeping, my heart goes out to you, Jittery.  What I would not give if it was in my power to grant you the ability to sleep.

 

I took Tylenol PM a couple of times ,  but after that I took nothing, because I really believe that all the OTC drugs we introduce into our bodies does nothing but confuse our already confused brains even more.

 

Many nights I spent In my recliner, realizeing that if I went to my bed, all that would happen is a night long obsession wondering why I could not fall asleep.  being in the recliner actually made me more relaxed, and at times I may have slept some.

 

I have read some of your posts, but did not respond before,  because I Just did not have the words to comfort you, and I wanted to so badly, as I could feel the pain and distress you were going through.  All I could have told you is that time, and time alone is the missing link necessary  to capture, and to end our sleepless nights.  I felt you needed to hear more than that.

 

You are going through more than any person should have to. If your sleep problems are a result of benzos, you will sleep again, sleep in away that we are meant to sleep, a sleep that restores us for the challenges that await us another day.

 

Somehow, someway, you must try not to even think about sleeping, forget that the word sleep even exists.  The thought of not being able to sleep is tearing you apart.  I was the same way.  I would go to bed at night and pound my pillow with my fists, and beg over and over again, please, please i need some sleep.  Nothing helped me but time, time and time alone healed me from what the Ativan and Ambien did to the the part of my brain that regulates sleep.

 

Jittery, from the bottom of my heart, I know that sleep will return to you, just as it did for me.

 

Take good care of yourself.

 

pj

 

Hi Jittery

 

It is me again. I posted a while ago. I am so sorry that you are suffering in the way you are. It must be incredibly difficult when you have the responsibilities of being a mother on top of all this. It seems incredibly unfair that you and many others have had this nightmare inflicted upon them. I really don't know what to say other than to offer words of encouragement. I have read many people's threads whilst being a member of support groups and most go through torture as I did before I recovered. It is easy for someone to say you have to bear this and it may (probably will) improve but you have to deal with your reality now. Personally I would not be taking ambien (a Z drug with a short half life). I did for some months and I believe that the doctor's decision to prescribe this for me actually made it harder for me to recover when I eventually recognised I needed to come off these drugs. But I appreciate why Malcontent opted for this. having no sleep is awful. I can attest to that.

 

However, her doctor's claim that 3 and 1/2 days a week does not lead to addiction is open to question. Indeed to be honest everything doctors and psychiatrists have said to me is open to question. They got me into the mess I experienced and as a result I am doing my own research from now on about everything they say. I once said to a psychiatrist that members of his profession are addicted to drugs- precribing them- and I believe I am correct. After all they prescribe drugs every day and believe in their efficacy.

 

Anyway I have prattled on too long. All I can say is tht you are most likely going to need to be immensely patient and determined if you want to get better. From the bottom of my heart I do hope you start to improve and that you do find a way out of this which eventually leads you to be drug free.

 

Ivan

Jittery, please don't give up. I promise you will get better. I don't know how long it will take. But you will get better.

 

Just keep coming to this site whenever you need to. For a while I was on this site about 12 hours a day, just out of my mind, but it helps because I know I'm not alone. You will make it through this, I promise.

Jittery,

sleep deprivation cannot be good for anyone. In your case it is more insomnia. The difference is important. With insomnia, nothing is preventing you from sleeping except your brain. The wisdom here is that if your brain is tired enough, it will knock you out and get the minimum sleep you need.

 

It was in month 7 that I got my first 2 nights of 5+ hours, until then it was that crappy hypnagogic wake up every half hour go back to sleep walk around for a while, dysfunctional  non-restorative sleep. Up until then the most I ever got was 2 hours in a row.

 

 

My psychologist told me to put on the relaxation music as I'm going to bed and do deep muscle relaxation to recondition myself to feel relaxed in the bed. I used an MP3 player and listen to relaxation exercise music for 15 minutes before shutting it off.

 

The other thing that really helped me is to focus on my breathing. That shuts my brain off. It would put me to sleep but not keep me there. So every time I woke up I had to do it again, focus on my breathing. I still do this, on the year off, and it is working. I am now sleeping 4 nights a week for 5+ hours. The other 2 or 3 are still very disrupted. 

 

Since you're already 7 months off, why don't you try to tough it out another month, because if you reinstate, you will be back to square one. All this will have been for nothing.

Thank you all so much. Went to the sleep psych today and he wants me to keep sticking to the program. I've cheated on it almost everyday. He said in 6 weeks I should be sleeping 6 or 7 hours. He treated a guy with a brain tumor on his sleep center and he was able to help him while he went through chemotherapy. I have to persevere and not cheat!!

HI Jittery

 

It's terrific you are getting support from a sleep psych. I only saw one a couple of times but the simple steps she gave me were immensely helpful. I stuck with them and apply them most nights. I take it she gave you the usual advice about going to bed at the same time, staying in bed, not looking at the clock, not drinking caffeine after 7.00pm, avoiding screens at least one hour before bedtime etc. They proved really useful. So many nights during my taper and afterwards I was awake really early but hung in there in the belief that I was getting some sleep. My GP told me that even if you don't think you're sleeping you are getting mini or even micro sleeps. Every bit helps. I am now still having interrupted, fitful sleep compared to pre-illness times but it is getting there and I appreciate that very much. Let's hope the same happens for you.

 

Ivan

I'm really sorry that you're having to deal with this and I know that it is hard. I have a kid too so I know the pressure you are facing on top of the w/d itself. You have to hang in there for the baby, sometimes it's truly the only thing that get me through the day. You can pm me any time you see me online to talk if you want.

Hi Jittery,

 

I just wanted to say again that I wish you well whatever you decide to do.  I guess I just heard the desperation in your messages, and have for some time.  I know how much you've struggled and for so long, and your mentioning in this post how you're only hanging in there for your daughter was rather alarming for me. 

 

So are you continuing with the sleep deprivation program or is it something else you're doing with the sleep psych.?  I couldn't tell from your post.

 

 

Ivan,

 

Thanks for understanding why I've made the choice to try Ambien.  While I know it's not the ideal choice, given the circumstances I feel it's the best one for me.  I truly can't take this insanity anymore. 

 

I agree with you that using it only 3x a week doesn't guarantee you won't develop a dependency, but my intention is to try it once and if it really helps take it for a few times just to get some sleep and then stop altogether.  The goal is to try and kind of reset my clock, and alleviate some of the severe anxiety I have surrounding sleep.

 

Mal

Hi malcontent

 

The worry I have about ambien (stilnox) is that it has short half life and is highly addictive. I took Imovane (Zopiclone) for seven months. I found I was waking up in the midle of the night with really unpleasant sensations flooding through my body. At first I took it with Valium but when I had ECT (that's another story) the psychiatrists at the hospital insisted I stop the Valium because of its similarities to anaesthetics but allowed me to continue the Imovane. This in itself shows how little doctors know as chemically Z drugs and benzos are very similar. After the ECT I continued for a while on Imovane. I found myself getting up when I awoke and taking more. The problem you are likely to confront is that your sleep may improve but you are only likely to postpone the problem. Dependency builds, one takes more and so on- just like benzos which you are trying ot rid yourself of. When I tried to stop Imovane completely and abruptly I could not sleep or at least that was my perception. Consequently, I used Valium to taper from Imovane which is what Professor Ashton recommends. I appreciate that you are desperate for sleep but the trap is that replacing a Z drug for a benzodiazepine is much the same as replacing one benzodiazepine with another.

 

Anyway I have said my piece. Now let me add what Prof Ahton said in May 2008: Not to be outdone, the drug companies rapidly produced a series of drugs that were not chemically benzodiazepines but produced the same effects. These were the Z-drugs zopiclone, zolpidem, zaleplon and now eszopiclone (Lunesta). They were marketed as sleeping pills but in fact have similar properties to benzodiazepines. They lead to dependence and, like benzodiazepines, cause a withdrawal syndrome. Yet 4-6 million of these are at present prescribed in the UK each year.

 

I do hope you have a think about this and that you make the right decision. Prof Ashton also says that one should treat one's doctor like one's car mechanic which is what I am going to do from now on.

 

Best wishes

 

Ivan

Hi Jittery:

 

I have stopped taking melatonin at bedtime and my sleep and well being have improved greatly.  I found a few articles on how some OTC and other sleep meds can cause excessive serotonin and create akathisia, heat/chills, and restlessness as symptoms. 

 

I think you are taking Trazodone at bedtime?  Just a thought...maybe the Trazodone and your BC pill with estrogen (causes an increase in serotonin too) might be giving you the insomnia issue.  Serotonin is decreased by the benzo, but as one heals from the benzo, serotonin synthesis will naturally occur again on its own. 

 

Here's a few links you might be interested in:

 

http://en.wikipedia.org/wiki/Serotonin_syndrome

 

Will send you another one in part II post.  Don't want to lose this message I just typed.

 

Rocko

 

 

Hi Jittery:

 

Here's another one:

 

http://www.livestrong.com/article/78293-effects-excess-serotonin/

 

Your serotonin levels might be fine due to being off the benzos for 7 months or so.  Do you think you can try and not take the Traz for a few nites to see if things might improve?  ...I know you have been in this quagmire for a long time. 

 

Let me know your thoughts -- keeping you in my thoughts and prayers for some answers. 

 

Best regards,

Rocko

Jittery, I am not a fan of ambien....it backfired on me last spring...very vivid dreams and it only put me out for about 3 hours.

 

What did help me was benedryl....50mgs put me out for 6-8 hours when I first started using it. The Antihistamines are not physically addicting and they also help with anxiety and nausea. Most of us build tolerance to them quickly so during my worst months of insomnia I tried not to use benedryl more than 4 nights in a row.

Hi Jittery,

 

How are you doing?  I've been thinking about you as I decided to not take the Ambien because I'm too afraid of a whole new addiction.  I'm pretty much at the end of my rope at this point.  I don't know how my sleep is ever going to turn around; every night is the same hell.

 

Please let me know about your sleep psych. and what he/she is doing for you.  I need all the help I can get.

 

Mal