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Battled with Insomnia since Childhood


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Hello Fellow Insomniacs

 

I'm in my late 30's, I've never slept more than 5 hours - even with the help of massive amounts of benzos, sleeping pills and alcohol.

 

Apparently I was every Mother's worst nightmare as a baby when it came to sleep.

 

Is anyone else here a chronic insomniac? Can insomnia be genetic?

 

I've been on meds for so long, I'm so scared my body wouldn't know how to fall asleep.

 

I lie awake at night and feel my muscles tense, my shoulders cramp, my neck stiffens, my jaw grinds. Eventually I drift off at about 3:00am in time for my cats to wake me at 5:00am.

 

I have good sleep routines, and all the apps, gadgets, temperature controllers, weighted blankets, white noise, etc...

 

My question is this: Has anyone who has been on very high benzo and sleeping pill doses for almost 20 years EVER managed to regain some semblance of 'normal' sleep once they had got some time without any meds?

 

(I ask because my BIGGEST fear about going off benzos is that I will never sleep again, as I am already predisposed to it) I'm ADHD and my brain never shuts down.

 

Thanks for reading y'all. Any and all suggestions always appreciated  :smitten: :smitten: :smitten:

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That's how I've been most of my life. I find I do best when my sleep hygiene is impeccable, I exercise and I give "declutter" my life. Basically have as few obligations as possible and give myself a long chunk of time in which to fall asleep. Say I turn off the TV, etc. at 9pm and just read books. I might get sleepy by 10 and go to bed then. If I give myself at least 10 hours of time to sleep I might sleep 5 hours, I might sleep 8. I'm rarely going to sleep more than 5 in a row. So the best case scenario is I wake up after 5 hours, read again for an hour or so and go back to sleep for a few more hours.

 

That's the best I can do and I'm okay with that. But I do best when I setup the conditions to make that possible.

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Wow! You are certainly on high doses of Xanex and Z drugs.

 

I can only speak from my personal experience of 15+ years on Z drugs. My condition, too, is genetic, I believe. My mother had sleeping issues as does my brother and even my 7 year old grand son.

 

Having been off all Z drugs since September, I see some small improvements. I am able to nap most days for 20-30 minutes. This was never the case while on the Z drugs. Night time sleep is still a real struggle. I sometimes can manage 1-3 hours unaided by drugs but invariability awake around 12-1 and can't return to sleep without drugs. Most nights, however, it is a guessing game as to whether I will fall asleep or not. Since we were prescribed sleeping meds for our chronic insomnia, I believe we will most likely need something for sleep the rest of our lives. I hope I am wrong and I can eventually sleep unaided by drugs but after 10 months off, it does not seem like I will be able to totally regain normal sleep patterns, at least anytime soon.

 

I have tried everything available from Rx, OTC, sleep music, acupuncture, electro brain stimulation etc. Been to Duke's sleep dept and told basically what I wrote above.

 

Have you tried Seroquil and mirtazapine? Might want to ask your doc about these.

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Wow I read what you wrote and feel totally screwed.

 

Have been on sleep meds 33 years i think.

 

They weren't working, but was stable until mirtazapine which screwed me over, made me bedridden.

 

I am stuck at less than .11 clon and 5 valium  but occasional lyrica or ambien would let me sleep if i had not for days.

NOW lyrica or gabp. make me vibrate.  Vibration has been a prob for me.

 

 

I am so exhauted and with no sleep can do nothing.  If I get a few hours I can do something.

 

Any ideas?  With sjogren's and hashimoto's thyroiditis autoimmune disease,  anti histamines dry my throat and wake me up... if i ever sleep.  ADs been nothing but trouble for m.

 

Tried samples of antipychotcs ages ago but they made me feel like I had a blanket over my brain-- felt awful.

 

I dont know what to do, who to see...  feeling upset.

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I've been insomniac since I was about 6. 

 

I had undiagnosed Hashimoto's Thyroiditis until I was 39. That may have contributed.

 

However, I'm now looking into the causes of the insomnia.  I think a lot of us here have sensitive set-point triggers for anxiety.  These are apparently set early in life.  I came from a chaotic home where my mother exploded into rages without warning and we all tiptoed around her, my father included.  You could be quietly reading a book and the next thing you know, your mother is smashing dishes in the sink because someone had a piece of toast and forgot to wash the plate.  Or you could be having a much-needed nap  and she'd burst through door, demanding to know why you were asleep in the middle of the day (Ah...because you were shouting at Dad and stamping around the house all night, maybe? Sheesh!).

 

By the time I was 15, I had mild PTSD, jumping at everything, totally unsure of myself, and very, very fearful and negative about life.  I'm guessing a lot of us are like that. And who can sleep, when you're always jumpy and stressed?  Even if life is calm now, your endocrine system still thinks it's under attack. It learned this long ago.

 

Anyway, the point is by the time you're around 5 or 6, your anxiety set point is, well, it's set.  But we can learn to reset our anxiety levels. 

 

I'm reading a couple of books on this subject: "The Body Knows the Score" by Bessel van der Kolk.  Interesting reading. 

 

Also"When the Body Says No" by Gabor Mate. A bit more practical.

 

Anyway, that's where I'm going now. 

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I have also struggled with insomnia my whole life (I grew up with an alcoholic father, which caused craziness at least three of four times a week in the middle of the night).

 

For me, I wish someone had put me on mirtazapine years and years ago. It has worked better than anything I have ever taken, and I have taken everything--benadryl, ambien for YEARS, klonopin and I think I was on valium as a child.

 

I have also had sleep study, they told me my brain waves were abnormal so they suggested an antidepressant, which is how I took lexapro for years. I don't think that helped the insomnia at all! It did help with some symptoms of PMDD though.

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Yes, I was 'shaken' awake as a baby for sleeping at the wrong time.

 

I was also threatened by my mom not to pee overnight and so at age one did not wet the diaper and my Mom was so proud! (she bragged about this, which is how I know).

 

I don't know what can be done about what is hardwired into the system.

 

I am so exhausted I think may have to reverse my benzo taper. ;(    I don't know if this is where I should post that?  I just need some sleep though.

 

ADs I always had bad side effects and don't think there is much I have not tried, which is why I was on them (but not sure if they will work for me at higher dose; maybe so).

 

Had sleep study done 40 years ago and, uh, I did not sleep, which is what I told them.  So that was not helpful.

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BarbaraAve, don't reverse your withdrawal.  Eventually you'll be off the benzo.  I know it takes a lot of effort and it's painful, but stay the course. 

 

Have you tried meditation?  I know it sounds trite, but honestly, I'm using one specific meditation technique if I wake up in the night, and it does seem to be helping me.  It's not like taking a pill, but it focuses the mind enough to stop worrying. If I stop worrying about sleep, I can relax enough to go back to sleep sometimes. 

 

The point of the books I mentioned is that you CAN rewire your anxiety responses. 

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ive changed my diet, started exercice, sleep higiene, sleep psicology, 5htp, solved my respiratory problems, and now Im sleeping 8h nights, most of them are 6-7, something impossible in the years before WD. And finally I have quality of sleep.

 

I think with the thing ive learned during WD I solved my main poblem

 

And I still in WD

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I have also had insomnia since childhood.

After a sleep study whilst in hospital with PTSD which, like BarbaraAve's, told me I didn't sleep - D'oh! Surprise!

 

Alot of testing and therapy followed and they were sure, as I am, that there is a genetic element.

My father, brother, cousin, aunt, grandfather, great grandfather, great uncles and aunts - going back at least 3 generations had the same problem and most of them took stuff from opium drops [readily available at that time in uk]  to alcohol, more recently.

My 93 year old great Aunt would only ever take Rescue Remedy  :) and she does the best of all of us.

 

Antidepressants don't work for me.

Wish I hadn't gone onto Valium 2 years ago, for sleep,  but we are where we are.

 

I follow the same rules as Stephen Dedalus and I believe that you can regain normal sleep again but it may not happen for everyone.

Oddly, my sleep is becoming more natural and longer lasting as I've reduced my Valium  - only from 15mg to 5 mg so far but still .

 

They gave me z drug in hospital but after a week my sleep seemed more broken than ever and i felt hungover next day.

It's a hellish problem.

I've often said that if i had one wish it would be to not have insomnia.

 

I always know when I'm going to fall into a 'good' natural sleep is because I always have that weird "jump" - don't know the real term but it feels as if you are falling then you jump awake.

I then settle into a good sleep but I've accepted the fact that I will never be a good sleeper.

I wish everyone good luck with this horrible condition.

I also find meditation very helpful especially in the night if wake - which I usually do.

 

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Hello everyone,

 

I wanted to thank all of you for sharing your experiences and suggestions. There is some relief in knowing we are not alone in this.

 

Someone responded that they had been abused as a child - it pains me to see that post has been deleted. If you ever read this again, please know I think of you and your message often and wish I had responded earlier. They also wrote that our anxiety levels can be set for life at an early age. I want you to know I full agree with that.

 

And that it made so much sense to me. And why I see my siblings battling their own anxiety demons in different ways (emigrating to new countries / changing careers, competing in exhausting Iron Man competitions)

 

We were abused as children and adults, I am the eldest. My parents despise each other and their worst fights (physical) used to take place at night once all 5 kids were in bed. And sometimes spilled over into our bedrooms. I think that is why I can sleep, unmedicated, during the day.

 

Wishing you all a kind, gentle week  :smitten:

 

 

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I haven't been on "high doses" of benzos or sleep drugs, but I did take amtiryptiline for 35 years, primarily to help me sleep, and also to keep depression from getting worse. I also took a benzo intermittently for about 20 years. So I do have a loong history of insomnia problems and drug use to combat it.

 

I totally think it is possible for anyone to regain pretty much normal sleep. It may take quite a while completely off drugs, it may take changes in lifestyle, diet and exercise, and perhaps even life changes such as a divorce. My sleep has improved immensely over the past 13 months, and I'm confident it will continue to improve. It's certainly not great (I still am often awake for 2-3 hours in the middle of the night) but I feel very rested and it is not unpleasant.

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Hi Everybody,

 

I did a CT of high dose oxazepam , although I was only taking the high dose for a few weeks, in the UK in an accident and emergency department of a district hospital .

 

I have had severe insomnia since this time and have tried a few drugs to help me sleep. I have managed to sleep on my own when I am very tired but the sleep brought hallucinations and I kept waking up. When the drugs help me I can sleep for 8 or 9 hours without a break so my basic sleeping mechanism is still there . I am trying to cope with the severe insomnia but it is difficult to do as before I was sleeping for 8 or 9 hours until I took the benzodiazepines (@@@@).

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Hi Psych You are having a rough time but yes I think your sleep has a very good chance of returning to whatever is normal for you.

 

I  have had the same experience when falling asleep naturally - I would fall asleep from exhaustion and then have a strange few hours of not being sure whether I was asleep or awake.

 

I still wouldn't say I was a good sleeper but it is kind of returning to normal the lower I get with my diazepam dose, which I find strange.

I still wake up at least once or twice during the night and I don't like it but that has always been the case for me except on very rare occasions.

 

I would imagine your CT will have  severely disrupted your mechanism but probably only temporarily and  I hope it returns for you soon  :thumbsup:

It is very hard to cope with I know.

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Hi slowly improving ,

 

Last night was a bit better and I managed to catch a nap for 2 hours yesterday afternoon in the office on a couch with a cushion for a pillow. At the beginning of yesterday evening I was sleeping for a few hours before the sun went down. I was awake then up to about 11pm then fell asleep and woke up at around 7.30 am.

 

Insomnia is my main symptom and it's there every day so takes a lot out of my day and the night goes very slowly when you aren't sleeping.

 

I must stick with this and conquer this problem (@@@@),

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Hi slowly improving ,

 

Last night was a bit better and I managed to catch a nap for 2 hours yesterday afternoon in the office on a couch with a cushion for a pillow. At the beginning of yesterday evening I was sleeping for a few hours before the sun went down. I was awake then up to about 11pm then fell asleep and woke up at around 7.30 am.

 

Insomnia is my main symptom and it's there every day so takes a lot out of my day and the night goes very slowly when you aren't sleeping.

 

I must stick with this and conquer this problem (@@@@),

 

Hi Psych1950,

I just want to say this for everyone reading. It is not a matter of conquering the problem. It is about not letting the problem conquer you. Withdrawal has to run its course and their is not much that can be done to speed up the process other than not doing things to make it worse. Energy is better spent learning to accept rather than to fight something that cannot be defeated. It also makes for a calmer mind and spirit.

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I do so  agree with you alohafromhawaii

I have spent most of my lifetime trying to learn to do just this.

My insomnia has always been an issue for me and I have learned to accept it and not let it conquer me.

I'm just sorry for those, like Psych, who are perhaps going through this for the first time, because of withdrawal.

It takes some getting used to but I do think that Psych will get through this because his is being caused by something specific so I do think he will return to a normal sleep pattern.

It's just hard for a while and especially if you are used to sleeping well for most of your life.

He does have the right positive attitude though, as do you  :thumbsup:

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Well nice to see a few people with the same problem.

 

I think, as mentioned, my dysfunctional childhood (abuse) may have started this, although it wasn't too bad until college.  But the reversal of cycle (up night, sleep, medicated, during day) is inherited.  My Mom used to stay up til 3 in the morning, as did her mother.  So think that is innate.

But they could sleep.  And nap.

 

I have napped like one time in my life.

 

I dunno... if went on benzos (and tried a few ADs but cannot tolerate them) was only for the sleep, altho sure, sleep can be related to issues of anxiety...... if I wind up off benzos, then what?

 

Tried breathing meditation but so far... feh.

 

Can remaining on a low dose of something work?

 

If not, what about taking an ambien like 2x a week when you absolutely hvae to do something?  But that is not really living, as you subsist in between.

 

crap.

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BarbaraAve,

Got to be careful with that Ambien plan. For years I used Ambien a couple times a week when I really needed to, but over time I decided that I needed to more and more often until it became every night. Then tolerance set in and I needed more and more every night and before I fully realized what was happening it was way too late.

 

For your plan to work you will have to have pretty strict willpower because once you have sleep, it will be hard to tolerate poor sleep again. Also, If you are having any sort of benzo withdrawal issue going on Ambien could cause some additional trouble. I do wish you luck and good sleep in the end.

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  • 3 weeks later...

Sorry to all you that have been battling insomnia for most your life. I too have battled chronic insomnia a very long time. It's been almost 35 years now. I toughed it out for quite a while not wanting to take meds. I guess because I was in my 20's that I was able to survive on 0-3 hrs sleep a night. At some point I tried natural sleep aids, then otc sleep aids. None of which worked. Years later a dr. prescribed me Amitriptyline, which worked great for a few years. I always hated to take any meds, so when it started not working as well and I ran out, I just quit using it. Then the insomnia did come back. I toughed it out for a while, not wanting to go the drug route again, but then started having a lot of heart palps, which was very scary. Long story short I was on Ambien for a couple months taking only a couple times a week. Then I tried to go without any meds once again, but the lack of sleep and the symptoms it was causing had me very frightened and I was a zombie. I went to the dr and he tried a few more prescriptions on me. None worked at all. That's when he said to me, "there's is something wrong with your brain and it can't be fixed". I was then prescribed Clonazepam and it worked great. I took it for about 10 years. I finally decided I had to get off of it. I did a year long taper and have been free of that nasty benzo for almost 3 years now. I have only taken doxy and benadryl for sleep since then. I been using them about 3 nights a week for the past 2-3 years. Funny, they work better for me now than when I tried them 30 some years ago.

Now, to what brought me here to benzobuddies today. My sleep deprivation, menopause and other factors were too much for me and were causing me a lot of chest pain and heart attack type symptoms. I went to the dr and he said, you seriously need to get more sleep and the fact I was using the antihistamines for such long time was not good. So, he prescribed me Trazodone. I did not want to take it, but I do not want to have heart problems either. I took the Trazodone for 2 nights and it didn't work. I called the drs office today and had to leave a message. I asked if I should stop using it or if I need to continue it for it to be effective. I got a call back saying that the dr had faxed a script for Ambein to my pharmacy and for me to stop the Trazodone. The thought of taking Ambein or any meds makes me very nervous and I really do not want to get started on another drug like a benzo. Anyone, know if it can be used a couple nights a week safely? Or, know of anything better to try? Any advice will be greatly appreciated. Thank you!

Searching

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Sorry to all you that have been battling insomnia for most your life. I too have battled chronic insomnia a very long time. It's been almost 35 years now. I toughed it out for quite a while not wanting to take meds. I guess because I was in my 20's that I was able to survive on 0-3 hrs sleep a night. At some point I tried natural sleep aids, then otc sleep aids. None of which worked. Years later a dr. prescribed me Amitriptyline, which worked great for a few years. I always hated to take any meds, so once I ran out of it I did not get it refilled. Then the insomnia came back. I toughed it out for a while, not wanting to go the drug route again, but then started having a lot of heart palps, which was very scary. Long story short I was on Ambien for a couple months taking only a couple times a week. Then I tried to go without any meds once again, but the lack of sleep and the symptoms it was causing had me very frightened and I was a zombie. I went to the dr and he tried a few more prescriptions on me. None worked at all. That's when he said to me, "there's is something wrong with your brain and it can't be fixed". I was then prescribed Clonazepam and it worked great. I took it for about 10 years. I finally decided I had to get off of it. I did a year long taper and have been free of that nasty benzo for almost 3 years now. I have only taken doxy and benadryl for sleep since then. I been using them about 3 nights a week for the past 2-3 years. Funny, they work better for me now than when I tried them 30 some years ago.

Now, to what brought me here to benzobuddies today. My sleep deprivation, menopause and other factors were too much for me and were causing me a lot of chest pain and heart attack type symptoms. I went to the dr and he said, I seriously need to get more sleep and me using the antihistamines for so long was not good thing. So, he prescribed me Trazodone. I did not want to take it, but I do not want to have heart problems either. I took the Trazodone for 2 nights and it didn't work. I called the drs office today and had to leave a message. I asked if I should stop using it or if I need to continue it for it to be effective. I got a call back saying that the dr had faxed a script for Ambein to my pharmacy and for me to stop the Trazodone. The thought of taking Ambein or any meds makes me very nervous and I really do not want to get started on another drug like a benzo. Anyone, know if it can be used a couple nights a week safely? Or, know of anything better to try? Any advice will be greatly appreciated. Thank you!

Searching

 

I used Ambien for 1 to 3 nights a week safely since it was first prescribed for me sometime back in the 90's. The problems started when I slowly found myself using it more often and began to grow tolerant to it. Prior to that I thought of it as a wonder drug and never realized that it could be dangerous. I suspect that it can be used safely provided that the user is very strict about how often it is used, never increases the dosage and has not previously gone through a withdrawal from a drug that affects GABA receptors.

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alohafromhawaii, thanks for the reply. The reason for my posting on here is because I did go through withdrawls from Clonazepam a few years back, so I am very scared to give the Ambein a try even for only a couple nights a week. Was hoping maybe someone on here that has been suffering with insomnia for a long time might be able to provide some input. I really do not know what to do. I hate to take meds, but I have been sleep deprived for way too long and it is starting take a toll on my health. How do you long time chronic insomniacs keep on going without getting really sick? I keep going on, but don't know how long I can keep doing this.
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Searching,

 

I always believed that sleep deprivation would cause serious illness and psychosis, among other things. The rules seem to be different in wd. I actually get sick less frequently than I used to. However, there's plenty of time feeling rotten with many symptoms and energy is an alien concept (I often wonder if it's a fairy tale). I started all of this in April of 2013. Most of that time I was only sleeping every other night with long periods of much less sleep. Prior to that sleep wasn't great either. With practice, determination and some gritting of teeth I've learned to carry on. It's getting better ever so slowly. Gosh it's hard to be patient with all of this. But after going through so much I'd hate to risk moving backwards. I fear that could happen to you if you choose to take the Ambien. I sure understand the desperation though.

 

I'm not sure if you've tried things like amitripyline or phenergan. They're not ideal but if you need occasional breaks they can do something.

 

I'm looking into hypnotherapy. With someone who has the training it's been found to be effective for insomnia. I'm hoping I can get more deep sleep with it. Might be worth considering.

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