Insomnia: Question about everyone's experience

[[Br...]]

Hi there everyone,

 

I know everyones journey is different, yet sometimes eerily similar.  Here is what is happening to me.  As you can see from my signature I wasn't on a benzo for a very long time, yet almost instantly noticed tolerance and paradoxical effects / interpose withdrawals.  I would take a Xanax at night to help calm me to sleep, as per request of my doctor (of whom also had me on metropolis succinate ER for blood pressure, since my first experience of having panic sky rocketed my blood pressure -- I hated this med and instantly stopped it -- took it for two days, I told her I would do everything naturally possible to correct my pressure -- cardiologist I saw weeks later agreed to me to stop taking this).  Long story short, I would take the Xanax and then wake up with chest felt like it was vibrating and cold, nightmares, and jumping out of my sleep, throughout the day at exactly the same time every day I would get chest pains and heaviness and dizziness, then it would subside at the same time each day (usually after I went to the ER and they would tell me that nothing was physically wrong with me after multple EKGS, CT SCANS, Blood Tests, X-rays.  After my 4th  ER visit and Cardiologist(3 EKG, STRESS TEST, ULTRASOUND), ENT visit,(HEARING TESTS FOR TINNUTUS) and Dr visits (4), Opthomologist (vision changes, floaters/flashes -- told I had 20/20 vision, normal pressures and good retinal attachment-- that everything looked normal).

 

In the third week I started losing my ability to fall asleep and my nervous system felt always on! Like I had so much nervous energy and was never tired (drowsy) yet I have been so fatigued.  I went two weeks where I would be awake for 3-4 days at a time then only sleep 30 mins-2 hours and then the cycle would start over.  The first two weeks I was dizzy and had blurry vision.  The drs only gave me ambien, but I had to use such a high dose (30mg) to even sleep 5 hours, and I didn't feel comfortable using that medication, because the sleep induced didn't seem real to me, it's like it just erased my memory for a few hours and I woke up feeling like "I think I got sleep, I don't remember the time between midnight and now (7 am).  So I decided to give my pills to my grandma to take away from me (I live with her).

 

Slowly I seem to get some sleep but no more than 2-3 hours per night and some nights 1 hour or less.  I exercise once a week now (used to crossfit 6 days a week) but I find when I workout I am wired that whole day and typically won't sleep.  When I do fall asleep I only know so because of the intense dreams that I get.  Sometimes a few episodes of sleep paralysis (or something like it where I can move really slowly, feel like my brain in vibrating and falling out of my head, then I either fall directly in to a dream or I wake up).  When I do fall asleep it's after 4 am.  And then I wake up and feel instantly wired or super awake. 

 

It has been exactly 5 weeks since my last dose.

 

I have learned to just accept the sleep issues, but it does concern me, and why did I ever have to google FFI (Familial Fatal Insomnia); however, benzo withdrawal / adverse effect makes more sense.  I used to be able to nap and sleep well, I would always be up late, but nothing like this.

 

Now I feel like I even am experiencing the dreams while awake (which doesn't make sense to me, but I feel like I have dreams but am also semi alert can hear my surroundings and fan in my room while seeing the dream with my eyes closed, and able to move)  So that scares me a bit, but I try not to worry about it.

 

I'm so surprised I don't look as bad as I would expect for having such extreme sleep issues.

 

I have tried everything OTC known to man,Melatonin (at high does 30-60MG) Valerian, Typtophan, GABA, Benadryl, Unisom (both styles), ZZZQuil, nothing seems to help.

 

My body just seems to decide sometimes it'll sleep and very minimally.  I also notice a huge rebound of REM with extremely vivid dreams or nightmares.

 

Recently I feel like I've been semi alert in the dreams (so I assume by noticing this, that the rebound is nearly caught up) I just can't wait for the SWS to come back, so I can enjoy a deeper sleep, and I just want to feel that drift off feeling or tired drowsy feeling that I used to get every night.

 

It's so weird to be wired and super awake all the time, especially when I wake up and not groggy at all, just fully alert and could get up and any point.

 

Anyone else gone through this and about how long on average does it take for sleep to return.

 

Until it returns my brain won't stop randomly thinking (dude you have the fatal insomnia) -- Week 6 off the pills begins today (i have noticed this sleep patter for now 7-8 weeks -- but stopped taking pills on Sept 27-- today is Nov2)

 

Any experiences shared would help. 

 

Sorry for the mouthful, I have went through a lot in a short amount of time and realize this is a LONG read!

 

-Brink

[[Sh...]]

Everyone's experience is unique, but there are a lot of similarities, too. I also wasn't taking benzos very long (about a month), when I tried to cold-turkey, and was hit with terrible symptoms and tried a bunch of other prescribed meds. But then I decided to do a slow taper using the Ashton Manual. Insomnia has been the worst symptom all along. I typically get what feels like anywhere from 1 to 4 hours of sleep once I take my nightly valium. Then the rest of the night, if I sleep at all it's exactly how you describe: still aware of not being really asleep, yet having spurts of vivid dreams in between tossing and turning. I think our brains just need time to heal before we can recover that ability to sleep normally. I've tried all sorts of things -- acupuncture, cranio-electro stimulation, yoga nidra, etc. -- not really sure how much, if any, those things have helped. Mostly I think it just takes time and patience. I'm sure we will not die from not sleeping. We are healing now, even as we're suffering. Hang in there.

[[Br...]]

It's such a weird experience, because at least in the past if I stayed up the whole night, my body would be drowsy and I would be drifting to sleep throughout the day, now it's like....did I sleep or not? haha  no indicators, I used to think the dreams are indicators of it, yet now I swear I'm having some of the dreams awake, or just sleeping like 20 mins then awaking and remembering or ending dreams while awake. 

 

Recently I think things are getting better because I cannot remember some of dreams instantly like usual, now it takes me a few hours to be reminded, oh yeah last night I dreamt: blah blah blah.

 

My coworkers are always interested in the things my dreams come up with.  They are wild or random, things I never thought I would think about.

 

Also the dreams recently have seemed to be more relevant to things that could actually happen in my life, so I feel that this a sign of healing in a way.

 

I want my normal sleep back, but I guess I need to be wait calmly.

 

I hate Z drugs and Benzos.  The sleep they gave me was weird and obviously these after effects aren't worth the extra hours they gave.

 

Z drugs I'm convinced don't even help you sleep, they just put you in to a temporary coma and wipe your memory of the time, so it feels like missing time, versus sleeping time.

 

-Gary

[[bn...]]

I am 128 days off of klono and insomnia has been the worst symptom yet.  In September I went into the hospital due to sleep deprivation. 8 days of no sleep, I was hallucinating, suicidal thoughts, hearing noise's. IMO, this is nothing to mess around with. I have never been suicidal in my life...I LOVE LIVING!

What they did to me in the hospital was feed me benzo's, traazdone and seriqual for 7 days.

I will not allow myself to ever get to that point again. I will take a rescue dose of V if I go past 4 days.

What is my alternative? TO go back in the mental ward???

There is just no easy answers!!!!

 

 

[[Br...]]

I am 128 days off of klono and insomnia has been the worst symptom yet.  In September I went into the hospital due to sleep deprivation. 8 days of no sleep, I was hallucinating, suicidal thoughts, hearing noise's. IMO, this is nothing to mess around with. I have never been suicidal in my life...I LOVE LIVING!

What they did to me in the hospital was feed me benzo's, traazdone and seriqual for 7 days.

I will not allow myself to ever get to that point again. I will take a rescue dose of V if I go past 4 days.

What is my alternative? TO go back in the mental ward???

There is just no easy answers!!!!

 

Yeah I feel done with asking doctors for help.  They seem to tell me that it is impossible for me to be withdrawing from meds and that it is all "in my head".  They literally think we are crazy.  Being that I am pretty well spoken, I have let a few of my doctors have it as far as being ignorant to not knowing of the ramifications of these meds.  They say "can be addictive" but they have no idea what that means when someone truly does build a tolerance or dependance.  They keep trying to give me ambien, I took it, no effect had to take three times the recommended dose to induce sleep, and then I told the doctors, I am scared of abusing this pill, I don't feel comfortable taking it.  They told me: continue taking it for a week and only at 10MG and see how it goes ( really after I admitted that I fear that I will abuse it, you tell me to continue trying it).  At that point I stopped seeking their "help" knowing that they keep prescribing GABA drugs which won't help my problem, since that is the exact area that needs healing not stimulation.  Just wait, next they will tell me to become an alcoholic to fix my problem (might as well recommend that, right).

 

So here I am 5 weeks later trying to cope on my own.  But let me at least say, the paradoxical interdose panic attacks are gone, the chest pains are gone, the racing thoughts are less, and the thoughts of doom or death have subsided, I don't have the vibrating trembles in my chest or the vertigo anymore; yet, none of those symptoms were drug related according to my doctors (multiple drs ER Dr, cardiologist, Family dr, urgent care). 

 

So now I'm just awaiting my sleep and rest to come back...time is healing me.

 

Slowly my emotions and personality are becoming back, no longer feeling like I need to rush to the ER because something is wrong.  They all recommended a psych, which I'm glad I never followed through because they would just medicate me, or describe to have depression or something (made up diseases for the most part with no medical tests to confirm).

 

I was actually in school to become a therapist and we never learned the addictive nature of psychotropic drugs, it always discussed as "can be habit forming" but that's it and it wasn't discussed in detail. We spent a month on heroin but a day on benzos.  I feel more educated now going through this, than all the years I was going to school for this very subject.  THINGS NEED TO CHANGE IN EDUCATING OUR MEDICAL FIELD!

 

Makes me concerned for other things they assume to KNOW 100% about.

 

-Brink

[[Sh...]]

Yes, that's good to stay focused on the positive as much as possible. It's really hard to do, I know! For me, the symptoms that have disappeared so far:

1) numbness in left hand/arm

2) extreme itchiness all over

3) extreme dry mouth

 

Also, just think about how much we've learned during our ordeals! This is knowledge will not only guide the rest of our lives after we've healed, but can also be shared with others: both medical professionals willing to listen and friends/families/acquaintances -- and possibly prevent others from going through this hell.

[[Ne...]]

Last night was a good night for me. Slept from 9:30pm to 6:30am. I woke up probably 4 times but fell back asleep. I am at 8 weeks c/t tomorrow. At first if I slept 2 hours a night it was good. I was so speeded that I didn't seem to need the sleep for the first couple weeks. Again, I use audio books to lull me to sleep. Put the book on for an hour. I never make it to the end. You can get free audio books from the library. The more boring but interesting the better. Sometimes I have to play the book 2 or 3 times a night. If my brain is working overtime I play music (classical) and the book. Then the endless loop thinking is blocked somehow.

 

The best thing so far is the lymphedema is gone from my arm and the neuropathy in hands and feet is much better. It is exciting    My dreams have returned. I think the reason benzos makes us crazy by suppressing our dreams.  Years ago in psych we learned that not dreaming can do that. My lungs are not so achy now. I don't feel like I have the flu all the time.  My eyesight is better. I can taste food. I don't gag when eating. I don't feel suicidal 24 hours a day.

[[Sh...]]

Wow, Neshamah -- looking at your "signature," you've been through a LOT -- more than anyone should have to endure. Congratulations on getting off benzos in spite of all that!

[[Br...]]

Yes, that's good to stay focused on the positive as much as possible. It's really hard to do, I know! For me, the symptoms that have disappeared so far:

1) numbness in left hand/arm

2) extreme itchiness all over

3) extreme dry mouth

 

Also, just think about how much we've learned during our ordeals! This is knowledge will not only guide the rest of our lives after we've healed, but can also be shared with others: both medical professionals willing to listen and friends/families/acquaintances -- and possibly prevent others from going through this hell.

 

I get numbness in my left hand (specifically my pinky) every morning when waking up

[[al...]]

This is what helped me at the height of my insomnia.... http://www.benzobuddies.org/forum/index.php?topic=78924.0

[[co...]]

Been there. I had nervous energy coursing through my body and felt exhausted but not drowsy. It felt like my brain just wouldn't fully "turn over." It's my least favorite symptom (especially when coupled with fatigue and exhaustion). The book "Say Good Night to Insomnia: The Six-Week, Drug-Free Program Developed At Harvard Medical School" by Dr. Gregg Jacobs was reassuring and helpful.

 

I've had many nights of what I consider "normal insomnia" and then two episodes that felt very severe (where I was also googling FFI). The good news is that both severe episodes passed and I was eventually able to sleep normally. It just took time. The body is constantly trying to regulate itself and find homeostasis.

[[Br...]]

Been there. I had nervous energy coursing through my body and felt exhausted but not drowsy. It felt like my brain just wouldn't fully "turn over." It's my least favorite symptom (especially when coupled with fatigue and exhaustion). The book "Say Good Night to Insomnia: The Six-Week, Drug-Free Program Developed At Harvard Medical School" by Dr. Gregg Jacobs was reassuring and helpful.

 

I've had many nights of what I consider "normal insomnia" and then two episodes that felt very severe (where I was also googling FFI). The good news is that both severe episodes passed and I was eventually able to sleep normally. It just took time. The body is constantly trying to regulate itself and find homeostasis.

 

Yeah I'm finding peace and have pretty much stopped questioning my sleep issues.  I'm still alive right now, so I should just appreciate the moments and know that I will sleep again. I feel like this benzo nightmare has stolen so many moments from me, because it altered the way I live my life and see myself.  Time I can teal will help my brain heal.  About how long did it take you to reach normal sleep?  And feel the drowsy drifting feeling? 

 

So far I have been having this wired feeling for 7-8 weeks and been off Xanax and Z Drugs for 5 Weeks and 2 days. 

 

My dreams that I have keep me entertained for now.  And I'm happy I'm no longer in a panic and waking up crying because I fear I'll never sleep again.  I feel like my rational mind has come back and that I'm adapting this as my new normal for now, until I progressively get closer to normal.  The good part is, because I'm always wired, I never drift off when I'm put in boring work situations, I just get dizzy instead, but at least I'm focused. lol.

[[co...]]

Been there. I had nervous energy coursing through my body and felt exhausted but not drowsy. It felt like my brain just wouldn't fully "turn over." It's my least favorite symptom (especially when coupled with fatigue and exhaustion). The book "Say Good Night to Insomnia: The Six-Week, Drug-Free Program Developed At Harvard Medical School" by Dr. Gregg Jacobs was reassuring and helpful.

 

I've had many nights of what I consider "normal insomnia" and then two episodes that felt very severe (where I was also googling FFI). The good news is that both severe episodes passed and I was eventually able to sleep normally. It just took time. The body is constantly trying to regulate itself and find homeostasis.

 

Yeah I'm finding peace and have pretty much stopped questioning my sleep issues.  I'm still alive right now, so I should just appreciate the moments and know that I will sleep again. I feel like this benzo nightmare has stolen so many moments from me, because it altered the way I live my life and see myself.  Time I can teal will help my brain heal.  About how long did it take you to reach normal sleep?  And feel the drowsy drifting feeling? 

 

So far I have been having this wired feeling for 7-8 weeks and been off Xanax and Z Drugs for 5 Weeks and 2 days. 

 

My dreams that I have keep me entertained for now.  And I'm happy I'm no longer in a panic and waking up crying because I fear I'll never sleep again.  I feel like my rational mind has come back and that I'm adapting this as my new normal for now, until I progressively get closer to normal.  The good part is, because I'm always wired, I never drift off when I'm put in boring work situations, I just get dizzy instead, but at least I'm focused. lol.

 

The first "severe" episode of insomnia lasted  about 1.5 months. This was a couple of years ago and I was prescribed Xanax but I only took it a few times when I was really desperate.

 

The second "severe" episode was four months ago when I cold turkeyed Xanax after taking it every day for 2 months and immediately crossed over to a much smaller dose of Valium. I took several weeks to stabilize but I eventually did.

 

I'm sorry you're dealing with the dizziness. It will get better though. Take it one night at a time. And if nothing else just focus on "resting." Don't look for sleep, let it eventually find you.