Went to the Dr's Today: Ruled EVERYTHING OUT!

[[Ma...]]

Well I went today The Dr Went over all my blood tests, EVERYTHING is Normal, Thyroid, Blood Count, Vitamin counts, my Body temp some reason is low at 96.4, for some stupid reason my BP was low at 124/75.....Everything checks out....as The past 2+ years I have been looking up ANY reasons why all of a sudden for 0 reason I stopped sleeping after I used to sleep 8-12+ hours most of my life, and this is BEFORE the meds, why Insomnia started, Insonia just don't start out of nowhere, there has to be a REASON for it, a blow to the head or tramatic things happen in your life, none of that happened to me! You just don't sleep well one night then the next night sleep is your mortal enemy, it does not work this way

 

So Now that everything has been ruled out, I can now say that the reason I had this start at age 35 (MIDDLE AGE) and out of nowhere is that I do indeed have Sporatic Fatal Insomnia! If they cannot find anything wrong with me with any tests then I can say I have this because thats one test you cannot test for, Since its so rare Most Dr's dont know WTF it really is, so.....there we go!

 

I heard you can at least live 5 years if you have that so Im coming up to half way so far, stuff gets worse and worse, just waiting for me to stop sleeping all together then the real fun begins, the sickness and hallucinations, this will be really FUN!

[[be...]]

I thought that you had sleep issues prior to being on benzodiazepines. I am glad to read that all your tests came out fine. My problems with insomnia started decades ago. I slept every night and one day I woke up and the insomnia started. I had nothing traumatic happen, nor did I have a head injury.

 

Sporatic fatal insomnia is extremely rare. Maybe as few as 100 world wide a years are affected by it. It is also even rarer for those to live beyond a year. However, I have seen a number of members, over my time, here who believe that they have it. I also see people at sites supporting those withdrawing from other medications who think they have it as well.  It is just way too rare for all these people to have it. What did you doctor think of your diagnosis? 

[Guest [ba...]]

I'm living on borrowed time then.  My sleep has been poor for at least a couple of decades.

[[Ma...]]

As I said Dr dont know much about that cause its rare so they would never probably suggest it, also if you been having this for DECADES then you don't have SFI, Average life for it is at least 5 years, if you went past that you dot have it

 

Fatal Family Insomnia I know I dont have cause no one I knew had it, that one is faster acting too so I would have been dead with that form by now, average life for that one is 7 months to 2 years

 

And yes Benzo I did have sleep problems before benzos which was the whole reason I got on them, which is also why I stated that Getting to sleep has NO reason to be a benzo withdrawl symptom if I had that before the benzo

[[be...]]

As I said Dr dont know much about that cause its rare so they would never probably suggest it, also if you been having this for DECADES then you don't have SFI, Average life for it is at least 5 years, if you went past that you dot have it

 

Fatal Family Insomnia I know I dont have cause no one I knew had it, that one is faster acting too so I would have been dead with that form by now, average life for that one is 7 months to 2 years

 

And yes Benzo I did have sleep problems before benzos which was the whole reason I got on them, which is also why I stated that Getting to sleep has NO reason to be a benzo withdrawl symptom if I had that before the benzo

 

I was wondering what you doctor thought of "your" diagnosis, not theirs.  Also, I can find nothing that says the average death comes in 5 years. That seems to be a bit out there.  Could you reference something?  I would also guess at 2.5 years that you would be suffering terrible from loss of motor skills if this was your fate. Mark, I feel for you not sleeping, but in my humble opinion your insomnia is from withdrawal.

[[Ma...]]

if I had Insomnia before benzo's and had a hard tie getting to sleep basically I cannot see how having a hard time getting to sleep is withdrawl related, I was thinking by now 4 months off at least my quality of sleep would get better but its not

 

Past 5 Days I got 2-3 hours of light awful sleep tops, last night though I slept longer I think but I woke up and Felt drugged, It was that bad, the Tiredness and Fatige feelings are horrible, If I am sleeping I know now Im not getting past stage 1 of it

[Guest [ba...]]

Mark - are you tapering or did you do a c/t or are you still taking benzos and/or other meds?  Maybe you could add a little more info to your signature so that we could know a little more about you without having to read back through your old posts.

 

It's very common for individuals in withdrawal to 'Google' various symptoms and assume the worst. 

[[Ma...]]

I took abunch of meds but most didnt last longer then 1 month, Ativan I was on 1mg for 2 years, I cut it in half for 2 weeks then fully stopped, I doubt a Cold Turkey on a measly 1mg of ativan would do that much to me

[[Bu...]]

 

Mark,

 

You have been given some excellent advice from a couple of very knowledgeable people here at BB; based upon what I have read I concur that ALL of your sleep issues are probably benzo related and your cold turkey from "a measly 1mg of Ativan."

 

BTW, 1mg of ativan is NOT measly at all! 2 years of 2mg ativan is more than enough to cause damage to your GABA receptors and quitting cold turkey is never a good idea. You are most likely in PAWS, prolonged acute withdrawal syndrome.

 

With all due respect, I sense a bit of hostility from you. While I and others certainly do sympathize with what you are going through, you need to trust the wisdom and experience of those of whom you ask advice, at least research what is being told to you.

 

Also, you will not die from this insomnia. Working yourself up over it only further exacerbates the symptoms by keeping you in a fight or flight condition. Learn to relax and listen, develop a good plan to deal with this. Take the good news that there is nothing physically wrong with you, that's good right?

 

Okay now my advice... From what I understand, cold turkey has brought on PAWS. Chronic insomnia is a typical side effect from PAWS. You can either power trough this thing as best you can by, lowering your expectations for sleep, treating it as best that you can with other non-benzo meds (see the Insomnia threads) or...

 

You might want to consider re-instating a long acting benzo like Valium at the lowest possible dose until you become stable and get your sleep back. After a few weeks then start a slow and steady many month taper until you get off of the benzos the recommended way and no more cold turkey.

 

Additionally, many of us myself included got some relief of insomnia from off-label prescriptions of Flexeril, phenergan, and gabapentin. You will need to be careful with these as well but they may provide some relief until you get your sleep back after you heal.

 

Wishing you all the best Mark,

 

 

Wilson

 

 

 

 

[[Ma...]]

 

Mark,

 

You have been given some excellent advice from a couple of very knowledgeable people here at BB; based upon what I have read I concur that ALL of your sleep issues are probably benzo related and your cold turkey from "a measly 1mg of Ativan."

 

BTW, 1mg of ativan is NOT measly at all! 2 years of 2mg ativan is more than enough to cause damage to your GABA receptors and quitting cold turkey is never a good idea. You are most likely in PAWS, prolonged acute withdrawal syndrome.

 

With all due respect, I sense a bit of hostility from you. While I and others certainly do sympathize with what you are going through, you need to trust the wisdom and experience of those of whom you ask advice, at least research what is being told to you.

 

Also, you will not die from this insomnia. Working yourself up over it only further exacerbates the symptoms by keeping you in a fight or flight condition. Learn to relax and listen, develop a good plan to deal with this. Take the good news that there is nothing physically wrong with you, that's good right?

 

Okay now my advice... From what I understand, cold turkey has brought on PAWS. Chronic insomnia is a typical side effect from PAWS. You can either power trough this thing as best you can by, lowering your expectations for sleep, treating it as best that you can with other non-benzo meds (see the Insomnia threads) or...

 

You might want to consider re-instating a long acting benzo like Valium at the lowest possible dose until you become stable and get your sleep back. After a few weeks then start a slow and steady many month taper until you get off of the benzos the recommended way and no more cold turkey.

 

Additionally, many of us myself included got some relief of insomnia from off-label prescriptions of Flexeril, phenergan, and gabapentin. You will need to be careful with these as well but they may provide some relief until you get your sleep back after you heal.

 

Wishing you all the best Mark,

 

 

Wilson

 

I keep saying this my main part was Getting to Sleep to start before Benzo use, how can Benzo withdrawl be apart of that when I was having sleeping issues even before the benzo use? Thats all Im asking

 

Also I know all the people here are helping and Im not objecting this, but By now, 4 months after taking it I should havce seen some Progress, a little even, and for sure Better Quality sleep! Most people here take 5-10MG of stuff, sometimes 2 or 3 meds for 5+ years, I can see coming off that much yeah, 4 months would not be enough but for 1mg it should be

 

And yes there is a way you can die from Insomnia, Maybe not from Insomnia itself but the lasting effects, If you get 2-3 hours of Poor No Quality sleeps a night then your up a day or 2 after that, it effects your body, your brain and heart can only allow so much before something happens, your heart for sure, it slows up at night, by not sleeping much or at all it pumps harder and harder all the time, it cant do that forever

[[be...]]

I took abunch of meds but most didnt last longer then 1 month, Ativan I was on 1mg for 2 years, I cut it in half for 2 weeks then fully stopped, I doubt a Cold Turkey on a measly 1mg of ativan would do that much to me

 

1 mg is not considered a low dose and two years is a very long time to be on something that is only meant to take for several weeks. You far exceeded that. Since your insomnia seems worse than previous bouts with it is how I attribute it to withdrawal. When was the period in your life when you did get 10 hours a night?

 

[[Bu...]]

 

 

I keep saying this my main part was Getting to Sleep to start before Benzo use, how can Benzo withdrawl be apart of that when I was having sleeping issues even before the benzo use? Thats all Im asking

 

Also I know all the people here are helping and Im not objecting this, but By now, 4 months after taking it I should havce seen some Progress, a little even, and for sure Better Quality sleep! Most people here take 5-10MG of stuff, sometimes 2 or 3 meds for 5+ years, I can see coming off that much yeah, 4 months would not be enough but for 1mg it should be

 

And yes there is a way you can die from Insomnia, Maybe not from Insomnia itself but the lasting effects, If you get 2-3 hours of Poor No Quality sleeps a night then your up a day or 2 after that, it effects your body, your brain and heart can only allow so much before something happens, your heart for sure, it slows up at night, by not sleeping much or at all it pumps harder and harder all the time, it cant do that forever

 

Mark,

 

Why is it so hard to believe that you're insomnia after quitting is related to withdrawal or at least made worse from it? The original insomnia may or may not still be there, but what you have now sure seems withdrawal related especially since you cold turkeyed.

 

Not sure what you meant when you said "but By now, 4 months after taking it I should havce seen some Progress, a little even, and for sure Better Quality sleep! Most people here take 5-10MG of stuff, sometimes 2 or 3 meds for 5+ years, I can see coming off that much yeah, 4 months would not be enough but for 1mg it should be Taking what?  please clarify...

 

Again I would say try to relax. Don't keep convincing yourself that you are going to die from insomnia, stay positive. Thoughts are things and can manifest physically, think kind and peaceful thoughts... Know that while you may not be sleeping you are still getting some rest, right?

 

I don't mean to minimize what you are going through at all, I was right where you are, it sucked... Have you considered the other meds that I mentioned? They may help, especially the Gabapentin... Have you considered re-instating and tapering properly once stable? At least then you could get a little well needed sleep and rest for awhile.

 

Best,

 

Wilson

[[Ma...]]

Well Benzo most of my life, Younger till I turned 35ish, Especially in High School and after that I slept alot, hell my parents had to make sure I was still alive, thats how long I sometimes slept, Id wake up overtired and I would actually take a nap again, so yeah sleep was no problem for me, October 2014 that changed out of nowhere for no reason

 

and that Comment I made I said most people here take alot more meds for much longer periods so I said I can see it takeing much longer then 4 months for you to return to normal, 1mg f Ativan to me should have cleared up some by now, 4 months is awhile for just that dose

[[be...]]

in my opinion it is not so much the dose but the method how the are stopped. CT and very rapid withdrawals are ill-advised for a number of reasons. One is that symptoms can be severe. Right now you have severe insomnia. If you had sleep issues before your Ativan use they would likely return when you stopped using it, and since symptoms can be severe your original insomnia is most likely magnified

 

[Guest [ba...]]

These drugs are potent.  Don't be fooled by the small amount. 

 

I c/t'd 2 mg of Ativan and was not 'right' at the 4 month mark.  Yes, there was improvement from the first month, but I still had a ways to go - especially with emotions and sleep.

 

I think that BuhbyeBenzos mentioned Gabapentin.  It may offer you some help with your sleep.  I took 300 mg at bedtime for a couple of months during my recovery and it prolonged my sleep by an hour or two.  But what helped me the most with sleep was learning to relax about the entire sleep issue.  Worrying about it is what got me started on benzos in the first place.  I still sleep pretty lousy (compared with most people), but I no longer anguish about it which allows me to sleep better than when I used to anguish about it.

[[Ma...]]

Well I been up nearing 20 hours again....Layed in bed for over 2 hours with no sleep, I guess Ill just stay up abit and then try again later, all I can do.....Also I may get on Lexapro, is that any good for anyone? I know its not a benzo

[[be...]]

I would suggest not laying in bed for hours when you can't sleep. I would suggest if you can't fall asleep in 15 to 20 minutes to get up. It does no good tossing and turning and counting the hours you have been awake. I have a feeling your mind is going a mile a minute as you obsess about getting to sleep. I don't know of anyone who can fall asleep when they are feeling the amount of stress that you most likely are. I know you had a negative experience before with Serequel but perhaps circumstances have changed. We have had members here who used extremely low doses 3-6 mg and it has helped them immensely with sleep.

[[Tr...]]

Mark,  with your low body temp. bp and sleep issues.  It sounds like your limbic system is out of whack.  I'm no doctor.  Just trying to think what could be the source of your problem.

 

Try

[[Ma...]]

well still up, I tried yet again to sleep with no luck, so I been awake 28 hours now, Staying in bed 15-20 minutes each time I will never get to sleep that way, even when I slept good I never fell asleep that quick, mostly it took me about an hour back then

 

And Even if I got out of bed each time every time I go back its more and more anxiety added when each time I dont sleep

[[Bu...]]

 

Hi Mark,

 

Could it be performance anxiety? You now associate your bed with not sleeping? Maybe try to get your rest in a comfortable chair, think of it as "rest", don't "try" to sleep, take the pressure off of yourself. Even just resting is okay.

 

I have read your thread a few times, there have been many really good suggestions given to you. Have you thought about any of them? Re-instating and then doing a proper slow taper? Gabapentin?

 

I too went many days with almost zero sleep, but took only a few quick naps when I crashed. I got better you will too. If I were you, I would re-instate with valium, get the needed rest, heal up a little bit, get my mind right, make many lifestyle, diet and health changes and start a well designed taper. Just me, good luck.

 

 

Wilson 

[[be...]]

well still up, I tried yet again to sleep with no luck, so I been awake 28 hours now, Staying in bed 15-20 minutes each time I will never get to sleep that way, even when I slept good I never fell asleep that quick, mostly it took me about an hour back then

 

And Even if I got out of bed each time every time I go back its more and more anxiety added when each time I dont sleep

 

You have to stop counting the hours you are awake. It's driving you crazy. It doesn't matter what the number is. What matters is you are not sleeping. If it took you in the past a hour to go to sleep get up at the one hour mark if you are still not asleep. Again, I would not lay there for hours. What are you doing to prepare yourself for sleep?

[[Bu...]]

 

Hi Mark,

 

I went back through my daily log from when I was at my worst point, very humbling. I found a youtube binaural isochronic tone that did help me get some sleep. It is attached for you along with a boring sleep inducing hypnosis that also worked well for me.

 

I downloaded these to an mp3 player and would listen to them to fall asleep, they worked... hope it helps.

 

Good luck,

 

 

Wilson

 

(Tones)

 

(Story hypnosis)

 

[[Ma...]]

When I prepare for nigth sleep I maybe have some water or Milk sometimes get in beddrink and watch alittle tv then turn off everything and try to sleep, also I would download those but sadly I do not own an MP3 player, I guess everyone else in the world owns one but me

 

Im going to try some zzzquil pills tonight and see what happnes, I have an appointment with my sleep Therapyst tomorrow if I have another uneventful sleep Dont know if Ill feel like going to it

[[of...]]

You can't try to sleep.. Trust me ive been there.. The conditions have to be Just Right and eventually without awareness you'll begin to doze off.

 

Anxiety is one of the main reasons for insomnia. When your laying in bed Trying to sleep, is your mind racing? Does your body feel restless? These are a couple of things you should gain awareness of.

 

What do your days look like?

[[Bu...]]

When I prepare for nigth sleep I maybe have some water or Milk sometimes get in beddrink and watch alittle tv then turn off everything and try to sleep, also I would download those but sadly I do not own an MP3 player, I guess everyone else in the world owns one but me

 

Im going to try some zzzquil pills tonight and see what happens, I have an appointment with my sleep Therapist tomorrow if I have another uneventful sleep Dont know if Ill feel like going to it

 

 

Mark,

 

Headphones and youtube will work... Add some carbs to the milk before bed, NO TV! Reading is better... Here is something else that I posted way back when, hope it helps...

 

Wilson

 

Sleep is a process that begins the minute you awaken... Have a nice alarm clock, nothing to harsh, even those increasing light alarms are good...Welcome and greet the new day. Say your prayers and thank God for what ever sleep or rest that you received...Get some bright light or sunshine as soon as possible, You may need to add vitamin D to your regimen if you cannot get enough light!... Eat a high protein breakfast... Try to get at least 20 minutes of exercise everyday, but not too close to bedtime. Even just a brisk walk is good, something! 

 

Limit caffeine, limit or stop nicotine or any other stimulants, Limit sugar intake. Eat good real food, lot's of veggies and protein. Stay away from hormones that have been added to food and milk!

 

Within a few hours of bedtime, try not to watch, read or engage in any activity that gets you fired up, be boring for a while... No crazy shoot'em up movies or books or TV shows that make you angry, no POLITICS! Anything that creates a fight or flight response should be avoided at all cost! Maybe even add a good quality adrenal support supplement which will also help control cortisol and adrenaline surges.

 

Seriously create a good well planned nighttime ritual. Reverse the light thing from the morning... Slowly reduce the light that comes into contact with your body and eyes. The pituitary gland creates melatonin and other sleep hormones as light is reduced. 2 hours before bedtime, No more TV, or computer, turn down or off lights, find a small book light or candle and go someplace quiet and read a book, a boring book!

 

At some point say your prayers. Release all anger, sadness and fear, give it to God, FORGIVE! Then ask God to heal you and thank him for what he has given you! Remind Jesus of the promises he made to you... "That he would answer any prayer if you just believe!" " "Come to me, all you who are weary and burdened, and I will give you rest." Humble yourself before the creator, there is nothing to prove, no ego to promote or defend before God, he knows it all already... I pray on my hands and knees, it makes me feel more humble and respectful of the creator. 

 

Do some deep breathing exercises, stretching and yoga. Lie down somewhere and rest, if sleep comes that's a bonus, don't force it.

 

Maybe start a white noise sound machine that induces sleep, they do work! And go to Bed!

 

This may sound weird but talk to yourself in a nice soothing voice when trying to sleep. Use a tone that a mother might use to soothe a small child, gently say things like " It's okay, eventually I will fall asleep, my body is already resting and it is healing, it's okay now, lets go deeper and deeper and deeper and just drift off to sleep..." 

 

Visualize yourself in a room with a bunch of family and friends, no one is talking they are all just smiling and then they start to yawn one at a time and then they all are yawning , see yourself yawning to! Then everyone starts to dose off and fall to sleep... see yourself falling asleep to... Yawning is contagious and releases some sort of brain chemical that helps with sleep, try to fake yawn and bring it on...

 

Try to remember times in your life when you were so so very sleepy and you just slept easily; maybe one time on a plane or in a boring school class or something. Just try to remember when you were sleepy and slept. Then bring back that vibration to the present, try to create the feelings of that time.

 

Try to visualize complete darkness in your mind and just repeat the Word God or Yahweh or Jehova over and over, create a mantra, "I am that I am"... Think complete darkness and repeat your mantra, Yahweh, Yahweh, Yahweh... Let your inner voice get quieter and quieter as you say this...

 

Also throughout the day, say to yourself, tonight I will sleep so so well. Just a few times a day repeat the phrase tonight I will sleep like a rock, my sleep is getting better and better and will return to normal soon. It is a post hypnotic suggestion for self hypnosis, it works! If you get sleepy in the day try to hold it off and remember that feeling later at bedtime. 

 

Think of times in your life when sleep was not an issue, try to absorb that energy and vibration and bring it back to now!

 

Taking naps is okay, just no more than 20 minutes. Remind yourself  "See I do know how to fall asleep, it's easy and natural!"

 

Sorry if this was too long, but this was my ritual...

 

Good luck Mark