CLONAZEPAM

[shamrock]

On September 12th I started taking 1 mg of clonazepam for a sleep disorder associated with hynagogic jerks.  So far it hasn't helped much.  I will be contacting my doctor this week regarding this.  In the meantime, in your opinion, is this the only medication for this or should there be an increase in dose?
I do have estazolam which I did take last night because I was so desparate for sleep.

I just wanted a second opinion.

Thank you.

Shamrock

[CCF-Neuro-M.D.-JT]

Klonopin is the most common medication that is used for hypnic jerks as it helps most people with this disorder. You still have some room to go on it. We usually go up to 2 mg per night for a while before giving up on it. Other medications that are used for parasomnias but not specifically hypnic jerks include imipramine, prozac, and other benzodiazepines which are drugs in the family of klonopin. Again, these meds are not typically used for the jerks, but may be useful if the klonopin doesn't work.
Also practice good sleep hygiene by laying off alcohol, relaxing in the evenings, and try a little meditation before you go to bed.  Biofeedback may also be of help. Good luck.

[juju]

Thats interesting. My daughter takes 1mg. at bedtime for sleep also. She has traumatic brain injury from viral encephalitis and she has had great difficulty sleeping every since. She was 11 months old at the time and she is now 2 1/2 years old. Do you mind if I ask your age? And do you have side effects? I saw Stevie Nicks on 20/20 a couple of weeks ago and she said it caused her deep depression and several other side effects. She said you should only be on this drug for about 8 weeks.

[Jan Bailey]

I have been taking Clonazepam l.5 mg at bedtime for over 4 years now and do not notice any bad side affects.  I take it because of severe neuro symptoms during sleep (myoclonic jerking and vibration throughout my body) and it allows me to sleep through the night...I was told that my body would get used to the dosage and I would have to increase it, but after 4 years, that has not been the case.

[shamrock]

In response to your question, I am 50 years old.  I only was taking this drug for 9 days and so far there was no side effects that I could tell.  

Also just as an opinion, considering Stevie Nicks' addiction to cocaine and other things I would consult my doctor as to the side effects and the length of time (if any) that you should be on this drug.  That's what I'm going to do.

[bm]

Just curious as to how things are going now on clorazepam.  I have hypnic jerks as well and am taking the same thing.  My neurologist didnt seem to know much about these.  Did yours say typically how long they last or whether they go away?

[shamrock]

The clonazepam didn't seem to help me and my doctor didn't want to increase the dose so I went back on estazolam which is a sleeping pill.  For some reason my body finds relief with this drug.  She said this drug was in the same "family".  I have an appt. with her on Oct. 22nd and will ask her if this ever goes away.  I had aksed her how do you get it?  And she said they don't really know, just like when somone gets cancer.

How about you?  How long have you had this awful thing?  Do you find relief on clonazepam.  If so, what is your dosage and how long have you been taking it?  Do you find some night's worse than others?  Did you go to a sleep clinic?  Obviously any information you could share would be helpful.

Thanks.

Shamrock

[bm]

This condition hit me in August, completely out of the blue.  I am 32 and before this slept 8-9 hours a night with no problems.  I had two straight nights of absolutely no sleep when I went to my doctor.  The clonazepam has helped me sleep, but I do get a little groggy in the daytime.  I take 1 mg per night.  Sometimes I have taken .5 mg and this has been enough.  I have had 5 nights so far where I have slept without the drug (I think I am able to do this because it stays in my system so long).

[bm]

Shamrock,

I am curious to find out how your appointment went with your neurologist and how things are going for you.

[shamrock]

Dear bm,

Thanks for your interest.  Tomorrow I'm going to a new neurologist.  

I did go see my current neurologist a couple of weeks ago.  She didn't increase my clonazepam.  I'm just continuing to stay on my sleeping pill.  Even with this I average about 3-4 good hours of sleep per night.  My current neurologist has never treated anyone with this disorder and I am trying to find a doctor who has.  I still have the jerks and dream bad dreams constantly.

How are you doing?  I so envy you with only having to take 1mg. or .5mg. and not even nightly and that medication helps you.  It's been almost 3 years now since I've had 8 hours of uninterrupted sleep.  I'd give practically anything just to have 6-7 hours just once a week.

Do you know if this disorder ever goes away or how you get it?   Did you go to a sleep clinic?

Shamrock

[bm]

Shamrock

I am still being treated on the clonazepam, but I have had to move up to 1mg of it per night, which seems to mean I am becoming more tolerant of the drug.  I just had a sleep study done, but I did the sleep study while on the medication.  The technician seemed to think I had basically no movements, so I dont know if it will show anything.  I had a hard time falling asleep at all being hooked up to the wires.  I am meeting with my doctor on the 5th to discuss it.

I have read elsewhere that these jerks are not really hypnic jerks because they dont occur in stage 1 of sleep.  In your previous messages it sounded like yours occurred after you had skipped stages of sleep and the jerks occurred in the later stage.  A hypnic jerk is one that occurs in stage 1 of sleep.

I am curious as to what your new neurologist has to say about your disorder.  I have heard some say it is a form of nocturnal myoclonus (or periodic limb disorder).  Sometimes the parkinsons drugs are used to treat it because these actually eliminate the jerks rather than have you sleep through them like a sedative does.  I think it is good to find a doctor who has treated this before, because I dont think mine has.

When you say you get 3 to 4 hours of sleep, is it a situation usually where you fall asleep immediately in then wake up 4 hours later, or do you have the jerks for a long time until you fall asleep?

[shamrock]

bm,

As far as I can tell these jerks occur in stage 1 to 2.  It's either when I'm just losing consciousness or just lost consciousness.  The sleeping pill only lasts about 3-4 hours.

Because of my lack of sleep and my new neurologist was so busy yesterday, it's hard to remember everything he said.  I know I sure don't understand it all.  Hopefully I will in time.  I go back to see him in March.

What I can remember he said was:

"This disorder is an "odd duck".  I am a light sleeper.  It is not life threatening.  Your body is just trying to do what's normal and go through the stages of sleep".  He's sees about 3 cases per year.  He told me the reason the clonazepam didn't work for me, but I'll be darned if I can remember.  When I do, I'll pass it on.  He gave me a sleep log to record every night's sleep and awake periods.  He gave two prescriptions, a new sleeping pill and an anti-depressant (this helps with REM sleep).  It was my choice which one to take.

If I don't take a sleeping pill I cannot get past "the jerks".  He confirmed that.  He says I bypass stage 2 with the pill.  I told him I didn't need anything to fall asleep, it was just getting past that jerking stage.

As for future hope of getting past this, I'm not sure.  Maybe I'll have to stay on medication, maybe I won't.  I'm sure I'll know by March.

Good luck on the 5th.   Let me know what happens.

Shamrock

[shamrock]

bm,

I was just wondering if you got the results back of your sleep study on the 5th and what the doctor had to say?

Shamrock

[bm]

Shamrock

Sorry for not getting back.  The sleep study which I did while on my medication did not show anything in terms of the jerks.  It did show that I wake up periodically.  I may have to repeat the study.  However, I am now finding that I wake up after a few hours on the klonopin.

How is your new prescriptions working?  What are the prescriptions?  Are you noticing any differences?

[shamrock]

bm,

I'm curious as to why they let you take your medication during the sleep study?  They told me I couldn't, which I'm glad they did because the jerks/sleep starts showed up.

My new medication didn't work out.  I was up for almost two straight nights.  It was horrible.  I didn't care for the new doctor either.  I only sought him out because he had treated the disorder before.  But we were interrupted numerous times and the new medication didn't work, so I went back on my old medication and to my old doctor.


The medication I currently take is a sleeping pill named estazolam.  I have resisted taking a sleeping pill over the years.  But the jerks keep me from sleeping and the more sleep deprived I become the worse the condition gets.  This medication really helps me.  It gets me through stage 1 and 2 of sleep.  I do wake up during the night, some nights alot, but this medication helps me get back to sleep, usually without jerks. Remember, even if I have just to go to the bathroom in the middle of the night I still have to go through stage 1 and 2 again.  I do not need any medication to make me sleepy or to fall asleep.  It's when I start to change stages of sleep is when the sleep starts happen.

If you don't take your klonopin do you have the jerks?

Also what did your doctor tell you about this disorder?  Anything you could "pass on"?

Shamrock

P.S.  I don't know if you are familiar with the website "sleepnet.com", but it's quite informative.  I've found out alot about hypnic jerks.

[bm]

I have another appointment with my MD to discuss this.  What I dont understand is the awakenings and disruptions that I have after I get by the initial jerks when falling asleep.  I know that the medications frequently prevent a person from getting into deeper stages of sleep.  Has your physician explained to you why you wake up after you get by the initial jerks?  Do you then take more medication to get back to sleep?  Do you ever get more than 3 or 4 hours of sleep a night?

[shamrock]

Yes I do get more then 3-4 hours of sleep a night as long as I take the medicine.  Some night's are more restful then others, but always interrupted.

I think, in my opinion, that light, interrupted sleep (with jerks) is all part of this disorder.  Many, many days I have to take a nap in the afternoon, which tells me that I didn't get good quality sleep the night before.  Some days the jerks will let me nap, some days they won't.

You didn't tell me what the doctor said about this condition.  I like to research this disorder as much as I can.

[T-dub]

Hi,
About 2 1/2 years ago I went to a sleep clinic for help with my "knee jerk" symptoms at night, as well as poor sleep patterns.My problem was that my knees/legs would get electric? pulses through them where I just felt like kicking...and nothing seemed to work. It was very difficult to get to sleep. My other problem was "getting" to sleep. My brain was always too active, I had difficulty "shutting down". Consequently, I would lie there for hours. When I could finally fall asleep, if I  heard any sounds,I would wake up and then spend hours trying to get back to sleep!!!eeek! My Dr. prescribed Clonazepam. It worked marvelously....for a while. I went back to her, and told her that it seemed not to be working any longer,and that it was taking me longer each night to fall asleep. She told me to give my body a break from it for a week or so, and then do it again. That works! I have been on 1mg for over 2+ years. I have tried other medications, but this seems to do the trick.(for now)I don't do caffeine or any other stimulants...so I know that isn't my problem....but even so....I really feel for anyone who has this problem. Sleep deprivation is a horrible thing. Take care.

[shamrock]

How are you doing?

[bm]

I am doing ok.  I am still on clonazepam. Some nights are better than others.  I try to take 2 to 3 day drug holidays every two weeks to keep from becoming addicted.  How are you doing? How long have you been using estazolem?  When you say you suffered for three years, we you not taking the medication at all? What was your sleep like?

[shamrock]

When this hit me out-of-the-blue in 1998 I had no idea what it was.  I went to see a dr. and he said it was anxiety and treated me with BuSpar which didn't work.  After a while I, myself, checked into a local sleep clinic.  As my luck would have it the "jerks" didn't happen that night and the dr. at the clinic said it was anxiety.  I became soooo sleep deprived I had lost my short term memory and became very depressed because I thought I was going crazy.  No one understood my symptoms.

Then one day I was sitting here at my computer and I typed in "jerking while sleeping" and a litany of info came up.  That's when I knew I wasn't going crazy because I began to read about hypnagogic and myoclonic jerks and knew that was exactly what I had.

When I finally went to see a neurologist (which, as I look back, I wish I would have been referred to in the first place) and after explaining my symptoms and going for another sleep study she said that was what I had and I readily agreed with her!

I have been on estazolam for about 2 years.  And as I have said before, some nights it works better than others.  But by far, I'm much better then I was 3 years ago.

Does the clonazepam work for you?