For those 12+ months off...

[[sl...]]

I'm so sorry for always finding different ways of basically asking the same questions.  But I'm so sick and could really use a massive amount of hope today. sometimes its so hard to carry on each day with only a handful of stories that might be similar to mine.  I'm hoping more people over a year out will be able to answer these questions:

 

When did you experience your last bad wave? 

 

Do you have a physical symptom that you consider very debilitating? Or  is your withdrawal just a nuisance to your life?

 

As for me, I am currently 11.5 months off and back in a horrible wave for 3 days now after having a semi-break for 2 weeks.  90% of my time off clonazepam has been sheer hell.  My Hypnic jerks are very debilitating and I am concerned that they might just be the most debilitating nonsense that anyone has ever experienced here.  The sleep loss is horrendous and is making me very ill. I've lost so much hair and weight that I look like a cancer patient.  I'm so afraid that this will never end and afraid of dying prematurely.  I have so many other symptoms but I consider them a nuisance compared to what I deal with at night.  The burning skin, tinnitus, fast heart and the daytime spasms annoy me, but at least they don't rob me of important sleep.

 

Please give me some hope that I'm not the only one here suffering at this level of hell for so long and so often!  I was just crying tears of joy less than a week ago when I realized that I hadn't thought of offing myself for several days.  Now, I'm back in that frame of mind-  I just want this horror to end!  Only murderers deserve to live like this! 

 

[Guest [ba...]]

Have you ever considered using a high CBD version of cannabis (maybe a 2:1 or 3:1 CBD:THC ratio) to help control the muscle spasms?  This came up in a thread a couple of weeks ago with somebody (I forget who). 

[[sl...]]

Badsocref-

 

I purchased one of those oils meant for seizures (charlottes web) after seeing it on dateline.  It doesn't help my jerks and neither did smoking marihuana- that actually made them much worse!

 

I've tried so many things including a muscle relaxer.  It seems that my issues are more of a high cortisol thing vs a regular muscle spasm as they only happen at sleep onset and I also get nauseating adrenaline surges, brain zaps and auditory sleep starts.  It's horrific.  I experience all of this crap every night and usually have between 150-300 jerks a night.  I feel like I'm experiencing an exorcism.

 

Thank you for the thought.

[[Re...]]

I was getting jerks last night....then chose to sleep on my side.  I sort of curled up in a loose fetal position, hugged a pillow, and put 2 other pillows under my head.  The jerks went away and I was able to sleep.  Can't explain it.

[Guest [ba...]]

Badsocref-

 

I purchased one of those oils meant for seizures (charlottes web) after seeing it on dateline.  It doesn't help my jerks and neither did smoking marihuana- that actually made them much worse!

 

I've tried so many things including a muscle relaxer.  It seems that my issues are more of a high cortisol thing vs a regular muscle spasm as they only happen at sleep onset and I also get nauseating adrenaline surges, brain zaps and auditory sleep starts.  It's horrific.  I experience all of this crap every night and usually have between 150-300 jerks a night.  I feel like I'm experiencing an exorcism.

 

Thank you for the thought.

 

Yeah, smoking regular THC-rich cannabis often makes those jerks worse.  Do you remember which Charlottes Web oil that you tried?  Was this something that came to you from the internet or was it from a dispensary??

[[sl...]]

Came through the mail directly from the Colorado dispensary.  Don't recall the type, just that it tastes like mint-chocolate.

[Guest [ba...]]

My boss brought home a bottle of hemp oil (from Kentucky) for me to test.  It contained almost no cannabinoids.  You might want to see if you can find out more on what you ordered.  There's plenty of hemp oil being sold that contains virtually no CBD.

[[sl...]]

I do know it has none of the giddy stuff in it that makes you high... Is that CBd?  I've forgotten all the lingo as that was a year ago that I purchased it.  Maybe ill dig it out and try it again since its been about 6 months. 

[Guest [ba...]]

THC makes you high; CBD doesn't.  CBD helps some people with seizures and tics; THC can make it worse.  THC is good for sleep; CBD isn't.

[[Fa...]]

I gave debilitating pain and tension. Just a suggestion....have you tried shaking if the adrenaline before bed by taking a long walk or doing light exercise? I spend the first half of my day feeling shakey and full of fear. It seems once I get moving and burning adrenaline, things begin to calm.

[[Be...]]

Sleepless... It gets better. At 12 months I was still in such terror I felt like going to a tirture chamber every night and I wanted to die. The pain was indescribable. Sheer terror.

 

At six months I am better. I still have huge issues. For example I got a wave yesterday, i calm them attacks because it was so strong. I felt like someone was stabbing my brain causing my muscles to spasm. Then I just kind of passed out from 2 to 4 pm. I was just laying there half asleep undergoing the wave unable to do anything. Then last night I was very calm with minimal muscle spasms but with pain and so little to no sleep. 

 

It gets better but it is so ducking slow its imperceptible. If I am still hashing problems at 2 years out I am going to be very pissed.

 

We just have to hang in there, what else can we do.

 

 

[[Be...]]

Correction: I am at 16 months

[[Ja...]]

Hey there, I usually just lurk but I logged in to let you know I am 16 months out so maybe I can help you out a bit and you are definitely not alone.

 

 

When did you experience your last bad wave? 

 

Do you have a physical symptom that you consider very debilitating? Or  is your withdrawal just a nuisance to your life?

 

My Hypnic jerks are very debilitating and I am concerned that they might just be the most debilitating nonsense that anyone has ever experienced here. 

 

 

- My last wave was actually two days ago, triggered by some dehydration I reckon, but before then I hadn't experienced one in maybe a month.

 

- My withdrawal is debilitating to any practical aspirations in my life. For example, I recently started and was fired from a job due to the complications of withdrawal e.g.  Trouble concentrating, retaining information, basic socialization...  Cost me a good job so I would definitely say crippling.

 

- Also, I still get hypnic jerks 16 months out but only when I drink coffee or have done some strenuous exercise recently that day...

 

[[sl...]]

Thanks benzo free. 

 

Thanks java.  Were your jerks much worse?  Like, constant all night long? 

 

I'm ready to lose my mind.  I sleep 2 hours and wake up in terror; dry heaving, morbid feelings of death looming around me, cortisol or adrenaline pumping through me with every jolt... All because of this horrible condition that makes me feel like I'm in some alien body.  I would take ANY other symptom over this! 

[[sl...]]

Faith - thanks for the suggestion.  Yes, I've tried long walks... Even tons of jumping jacks after a string of jerks.  None of it seems to help.  Doesn't make sense why I seem to be the only one with this symptom so bad where NoTHING helps. 

 

Badsocref-  I looked at my bottle of oil.  It actually doesn't list CBd on it.  It's called: charlottes web hemp extract MCT 200.  Do you know how this stuff works?  Will it screw up parts of the brain we shouldn't be touching?  Of course, I'm so miserable that I'm willing to try almost anything at this point (but also still drug free and hope to remain that way).

[[Ja...]]

Were your jerks much worse?  Like, constant all night long? 

 

I'm ready to lose my mind.  I sleep 2 hours and wake up in terror; dry heaving, morbid feelings of death looming around me, cortisol or adrenaline pumping through me with every jolt... All because of this horrible condition that makes me feel like I'm in some alien body.  I would take ANY other symptom over this! 

 

For the first year, yes they were just as you described and a constant symptom. I would be jerked awake, sometimes kicking things pretty hard too like my coffee table lol or my arm would fly off and hit a wall *thump* 

 

Sometimes I wouldn't jerk awake at all but right as I was drifting off it felt like my brain just got plugged into a light socket.  I'd wake up with the worst groggy feeling along with the other symptoms you described and was incredibly frustrated and scared because my brain was fighting me all night.

[[sl...]]

Java- yes!  I get the same brain sensations along with thump sounds in my head, full body jerks, muscle contractions, flashes of light... You name it, I get it.  When did they start to subside?  How little sleep were you getting?  It's such a relief when I find people who have had this- not too many of us who "suffered" with this symptom.  I might be the worst one ever.

[[Ja...]]

I probably averaged 4-5 hours a night but it was more like sleep 1-2 hours be awake 3 hours, sleep again for 2-3 hours and be up the rest of the day.  It wasn't straight sleep.

 

They subsided close to a year for me.

[[La...]]

 

Please give me some hope that I'm not the only one here suffering at this level of hell for so long and so often!  I was just crying tears of joy less than a week ago when I realized that I hadn't thought of offing myself for several days.  Now, I'm back in that frame of mind-  I just want this horror to end!  Only murderers deserve to live like this!

 

Sleepless, my symptoms used to be very debilitating, especially the hardcore relentless insomnia that took a serious toll on my life. Many other sxs as well. Even when i was at 1 year off, while many other sxs had faded, the insomnia would just not let go. BUt heres the hope your looking for: I'm now at 31 months off and back to a great life. Sure, I still sometimes wake up a bit early, or occasionally only get 5.5 hrs of good sleep some nights, but all the terror, sleepless nights and myriad of other sxs are gone. I dont ever experience waves in the classic sense, but i sometimes feel a bit anxious in mind, but such feelings pale in comparison to the explosive anxiety experienced during/post-wd.

 

For me its all over, with recovery really being an incredibly slow and unpredictable roller coaster ride of ups and downs. Really slow incremental progress. I too, like you, thought it would never end, and the insomnia really destroyed me.

 

But I'm back to the good life. You will too.  Hang in there.  You know, there is a reason why all the names on BB have changed/turned over in the ~3 years ive been here. Think about that.

 

 

laser 

[Guest [ba...]]

Badsocref-  I looked at my bottle of oil.  It actually doesn't list CBd on it.  It's called: charlottes web hemp extract MCT 200.  Do you know how this stuff works?  Will it screw up parts of the brain we shouldn't be touching?  Of course, I'm so miserable that I'm willing to try almost anything at this point (but also still drug free and hope to remain that way).

 

The bottle you ordered contained 200 mg of CBD.  Might take 10-20 mgs to notice much of an effect, so 5-10% of the bottle.  fwiw - the pure CBD stuff is not preferred by my epileptic friends.  They want some THC in there too, but less than the CBD.  Usually a CBD:THC ratio of 2:1 or 3:1.  You could only get that from a medicinal dispensary; it could not be shipped across State lines.

 

How does it work?  In many ways.  Much good info now out in the world.  Here's a good guide.  http://www.elementalwellnesscenter.com/EWC_UMC.pdf

[[ve...]]

Hey sleeplessMT,

 

I know how miserable those jerks make you feel. I'd get them all night long and they wouldn't let me sleep at all, so what I'd do was to not sleep, get out of bed and not sleep for a day, and by the next night I got so sleepy and tired the jerks couldn't even stop me from falling asleep. I'd still jerk a couple at sleep onset, but it was like my brain just couldn't resist sleep no more. That way I also consolidated my broken sleep so I won't wake up many times through the night to be jerked again and again. It helped give me a full night of 7 hours, and the no sleep, sleep pattern went on for quite a while. It sucks and it's spartan, I know, when you're already so, so, sleep deprived and exhausted, probably worst than I, but I refused to stay in bed and only went to bed when I was very, very drowsy. I found that to be quite helpful when the jerks were at their worst. It also helped me with the anxiety when it came to bedtime.

 

I really hope those jerks improve for you and you get some reprieve. It's hell and I wouldn't wish it on my worst enemy.

[[sl...]]

Oh my.  If only that worked for me.  I tried that so many times but I would still not sleep.  I've gone as many as 4 days straight with no sleep.  Plenty of times with 3 days of no sleep... until I would finally take a damn Seroquel and get a bit of sleep.  I'm glad it works for you.  You are still fairly early off and I bet you will recover much quicker than me.  12 months of this nonsense is, well, nonsense. 

[[ve...]]

I'm really sorry to hear that sleepless. I can still get a twitch here and there when I wake too early in the morning, but at least they don't go on all night now. I was terrified that they wouldn't go away, but I think that they're slowly petering out away for me. My sleep is still disturbed though and usually only get 4 hours and I'm up.

 

I know it seems endless at this point in time, but they must let up.