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Hypnic Jerks
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Hypnic Jerks

I have been treated at CCF for hypnic jerks for about 4 years now.  After about 8 years with this condition I have done extensive research and can never seem to find out the cause.  Any new discoveries about this and why?  

Thank you.

Shamrock
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Benign Hypnic jerks or sleep myoclonus is quite common in the general population and is not associated with seizures or epilepsy.

There is not much new in terms of causes - because it is recognised to be so benign, nobody is really doing any research into it - especially nowadays when money to do research is hard to come by and has to be shown to benefit the population.

Sorry!
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I never knew this experience had a name.  I've been getting these jerks for the past couple of months and don't know why.  Just as I'm drifting off to sleep, my arm, hand, leg, foot or whole body jerk.  This happens repeatedly and it often takes me several hours to fall asleep and I'm bleary eyed in the morning.  I've been thinking of going to a neurologist.  Does anyone think that's a good idea?  Are there any kinds of treatments people know of?
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It's definitly a good idea to see a neurologist.  And if you don't find relief keep pursuing it.  For years I went to different doctors who had no idea what I was describing.  I even went to 2 sleep clinics.  After a few years of reseach on my own I found out it was hypnagogic or hypnic jerks and then made an appointment at the CCF.  Be thankful you at least can get some sleep.  I was unable to work for a few years due to sleep deprivation.  While the medication isn't perfect it gave me my life back of which I am incredibly thankful.  Good Luck.
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Hi Shamrock,

I have to say that I was dissapointed to see your posting. I have followed your case on the various forums for three years since my jerks started. I hadn't seen anything from you for quite a long time and had hoped you had found a cure which meant one was possible for this dreaded thing we have.

I do have some stuff to share with you that has helped me. Recently I discovered that I had pretty good nights if I drank a sports drink like gatorade before I went to bed. I discovered it totally by accident but it started me looking at minerals. I tried to duplicate the results with supplements but with no luck. It seems liquid form is better. I have however found that if I take the GNC Women's Ultra Mega vitamins I get similar results. I'm not sure what makes the difference but it I think it has something to do with the balance of calcium, potassium, magnesium and B vitamins. Anyway, I wanted to pass this along in case you could get some help from it.

I am curious to know if you are a woman that is near or in menopause. I have read on some womens forums that this is one of the symptoms of peri or full blown menopause and thought I would look into some of the natural hormones that seem to be helping so many. Have you heard anything about this?

Also, my problem seems to really flare under times of stress. Is this true for you also?

Finally, I read recently that this is symptom of fibromyalgia and is considered an alpha beta brain wave abnormality but I haven't been able to track down much about that. Was wondering if you had ever run across this in your research.

Anyway, please update me on how you are doing when you get a chance. Lele Bug
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Thanks for the info Lele Bug.  

I am a woman and this started at peri-menopause and now I'm in menopause.  I don't think this has anything to do with it for I know a few men that have this.

Yes,I do find that this flares up under stress.  I also find that the more fatigued I become the worse it gets.

Interesting about Gatorade, vitimans and fibromyalgia.

Do you see a doctor, take any medications?  How did your's start?  

Hopefully the doctor here can shed some light on this.

Thanks again....Shamrock
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Hi,

  I am new to forum.  I am 48 year old female.  You mentioned you had symptoms start perimenopause.  Would any of your symptoms be generalized, widespread muscle twitching (fasiculations).  Mine started about 3 months ago, I cant attribute them to anything.  Of course, worried about ALS.  Any help or information is appreciated.

Terri
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Hi Terri,

Yes I did have fasiculations start in my calves at that time.  I stll have them although I don't pay much attention to them anymore because I've learned to live with them.  Once in awhile other parts of my body will twitch.  For some reason that has never doesn't bother me at night.

Good luck.

Shamrock
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Hi Shamrock,

Thanks for the reply. I did see my internist when this first started and he felt it was definately stress related. I was under enormous stress and he put me on prozac which did help and definately eliminated all my peri female symptonms like monster PMS. I weaned myself off after a few months and things were ok (mostly ok nights with a few bad ones, particularly right before my period)until recently when again, I was under extreme stress, and it really flared.

When it first started I had just had some surgery which I have heard can make this start.

When I have bad nights I manage them mostly with benadryl and the occassional valium if they are really bad. I always have a couple of glasses of wine at night because it really helps me get to sleep with no jerks. Not the best solution I'm sure but it works.

I definately think the hormonal thing is a connection. I know men can have this but they have hormones too! Not sure if it is the root cause but may be a trigger, among other things, of the disorder. I'm definately going to pursue the natural hormone thing. I'll let you know how it goes.

Also, about the vitamins. I also found that tropicana orange juice with calcium helps. I looked at the label and it has lots of potassium, calcium and other minerals so I started looking into electrolyte imbalances and the sypmtoms. Jerking is definately one of them. This morning I woke up a 4AM and couldn't get back to sleep because and got up and drank some juice...was back to sleep in less than an hour. Not bad

Anyway, worth a try!

Talk to you soon.

Lele Bug
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Thanks for your info Lele Bug.  I'm going to purchase the Tropicana.

Good luck to you.

Shamrock
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Hey Shamrock,

I was looking around on the net and found an article about hypnic jerks. It seems the mayo clinic has/is doing some research on it. Here's an excerpt:

"While this phenomenon happens to most everyone, studies have recently begun to link occurrences of
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Hello everyone, am new to this forum but have been keeping up with many of your posting (especially Shamrock's) in the last couple of years.  I am 40 year old woman and have been having these hypnic jerks for a couple of years.  After being tested extensively and given Xanax, buspar, other anti-depressants, what has helped me has been Clonopin.  I am in a very small dose of .25mg @ night and have done primarily well...until a few days ago when it came back with a vengeance.  My jerks are mostly in my head but also do have them in my limbs.  I am considering increasing my dosage just to see what happens but want to be careful about it also.  I've got 2 young kids and can't afford to be walking around like a zombie throughout the day.

I am sad to read that Shamrock has had these for 8 years.  I am a hopeful person and was praying that they would go away forever.
I don't know anyone personally who has ever experienced these so it's very frustrating.  After seeing multiple doctors I have stayed with a neurologist for a while now.  

Do any of you ever experience an electrical jolt throughout your body with these jerks.  It's such a vicious cycle because when I am trying to fall asleep and get them, they cause my heart to race and lead to sleep anxiety.  

Reading your postings have helped me tremendously, just knowing that I am not alone in this suffering.  I will try the mega vitamin and the oj to see if it helps.  I too have often wondered if it's hormonal related although none of my sisters, mother or aunts have ever experienced this.  I haven't quite seen a pattern as to when they occur.  Best of luck to everyone and my prayers to all of us with this horrible condition.
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I apologize to everyone because I said I've had these for 8 years.  I never meant to discourage anyone!  I still have hope and will always have hope that these jerks will leave as transient as they appeared.  

And Lele Bug, that's interesting from the Mayo Clinic isn't it?  It's pretty convincing because the one pattern mine have maintained over the years is the more fatigued I become the worse they seem to get.  I've had a lot of stress in my life.  And for the life of me over the years I have tried to think if one particular incident of stress 8 years ago triggered this but I can't.  Maybe it's a culmination of stresses.  In any event, it was sure nice to see something written about this.  I truly thank you for your information.

Stay in touch as I will.

Shamrock
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Hello Girls,

Yes, hope is what we all need. I truly believe we can find the answer to this thing as long as we keep communicating.

Sammad,  I get the electrical shock too, sort a startle response that comes with the jerk and I think this is an interesting (and annoying) part of this thing. I have read so many posts from people experiencing this and there seems to be a common theme. ANXIETY AND STRESS.

Shamrock, doesn't it seem that most everyone who posts has or has had a history of anxiety and stress? Stress is a sneaky monster and is very cummulative. Sometimes you are under stress and you don't even know it. We women take on SO much in our lives and find it so hard to say no. We feel like we should do it all and we are also very hard on ourselves(not to mention the hormones!)

I have been reading alot about our condition and about stress and axiety. I have very carefully recalled every detail of what was going on in my life when this started. When I lay it out its amazing that I didn't end up with a complete nervous breakdown. On second thought, maybe I did. Here's what was going on:

I was layed off from a very high paying executive position with a
fortune 500 company. My husband, who is a pilot with a major US airline was under threat of furlough in the prolonged wake of September 11th (another whole set of stresses). One month later, I lost my best friend in a car accident. In the midst of all this I interviewed and I accepted a new position (that under the circumstances I felt like I had to take) with another large company that required us to sell our beautiful new home we had just built and move 4 hours away from our hometown. My ex-husband, whom with I have a son, hired an attorney to try to keep me from taking my son with us. In the meantime I was commuting to the new job during the week, driving home on the weekends, orchestrating buying a new home, the move, school registrations, etc and as if that wasn't enough, my Mom had just been diagnosed with a terminal illness. Any wonder why I couldn't sleep?

The jerks came on after I had developed sleep anxiety. Knowing I had to get up and go perform at a new heavy duty job when I couldn't sleep was overwhelming to me. I dreaded going to bed. I struggled through the days.  I remember laying awake in the hotel where I was staying during the week and listening to my heart pound and calling my Dad crying that I couldn't sleep. He's a doctor and prescribed ambien. It didn't work and he sent me to an internist who after alot of consultation and tests prescribed prozac. The prozac took the edge off and seemed to get me through and after a few months when things settled down I weened myself off. The jerks sort of became background noise. Sometimes bothersome, especially before my period, but mostly not too bad. After a year of living away we decided to come home. I gave up my position and came home to help care for my Mom until she passed away last June. Honestly, after such a long illness, I was relieved for her when she passed, she had suffered so much and amazingly I handled it ok (or so or thought)

8 months later, life was going well. My husband"s career was stable, I was staying home with the kids, walking them to school in the morning, working out, eating well, sleeping great and WHAM! We got sued over a stupid situation in which we were an innocent third party. It required an expensive attorney and lots and lots of stress and aggravation. Not the worst thing in the world but enough to blow the lid off my dormant stress. It started with waking up at 4 am, soon the jerks came back with a vengence.

I apologize for this long, drawn out post but I thought this was all relevent. I do believe this is a stress and anxiety based thing. I think physical things can trigger or aggravate it(hormones, diet, mineral and vitamin balance, excess caffiene, excess sugar). I think stess may deplete our bodily resources but at the end of the day I think the basis is stress and anxiety that causes insomnia that, in turn, results in sleep anxiety.

Recently I have tried to become very objective about this thing. At night, as I try to fall asleep, I try to just observe my falling asleep process. It's very hard but I try not to react to the jerks. It's not a cure but I think it may be a start. Some articles I have read say that a hyper-awareness of the falling asleep process develops with sleep anxiety and we overreact to the transition from light sleep to the next stage. The mayo clinic says the body and mind can become confused when it comes to sleep. Anxiety keeps the mind awake while the body is trying to go to sleep. I think both of these things sound valid. The good thing is that it sounds like these things can be corrected. We just have to find the method.

I'm not sure what the answer is but I find that when I eat low carb, stay up on my vitamins, keep my electrolytes in balance, am not premenstral, am not fatigued and sleep deprived, and am not under stress that this thing is not an issue. Easy to say, and hard to find that balance but all of these things seem to have an impact.  Is it so much to ask that we women cut ourselves some slack and take care of our physical and psychological needs? No, it's not, but we seem to have a hard time doing it.

It's after 2:30 am and I'm off to observe my jerks (LOL!) I'm not awake because I can't sleep, just adjusting from a business trip that  took me to a different time zone! (yes, I'm working again!) Anyway, sorry for the long post. Therapy, I guess! Hard to find people who understand, as I'm sure you both know. Let's keep supporting each other. We'll beat this thing!

Lele Bug


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Hi Lele Bug

It was good to read your last posting.  I believe in journalizing or putting my thoughts down in writing when I'm having a continual problem. For the first couple years with our problem I actually kept a nightly log to see if there was any kind of pattern (like the timing of each jerk, was I close to my period, did I have a stressful or peaceful day, etc.)  There was absolutely no pattern.  They were just there!

There would not be enough space in this Forum for me to post all the stresses I have encountered in my life.  I am under a great deal of stress right now, but "usually" if I take my medication I can get a descent night's sleep.  I completely understand when you say you try not to react to the jerks in the falling asleep process.  I try this too.  Sometimes it works, sometimes it doesn't.  It depends on the severity of the jerk.

It does seem like anxiety and stress play a significant role in this, doesn't it?  I remember when I was young (way before the jerks) my Aunt telling me that even though your dealing with a problem in your life at a certain point in time, it doesn't mean you can't have "fall-out" from it at another time in your life.  I'm pretty sure I believe that now.

Now with my medication things are pretty much under control so I don't do much research on this anymore.  Five years was enough.  Occasionally, like I did here, I'll ask a doctor a question.  I find it very helpful and therapeutic when I read other people's posting about this.  It makes me feel I'm not alone.  For about 3 years I actually thought I was going crazy because no one could diagnose it or the medication I was put on wasn't helping.  Thanks Lele Bug.

And sammad, before I started on medication I did experience the "electrical jolt" thing.  

Shamrock
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HI everyone.

Im new to this site and i am lloking for some advice.

In January 2006 I started getting jerks mainly at night when lying in bed (but fully awake) that happened all over the body (arms, legs, head, shoulders etc).  
I feel this has got slighlt better but I still experience at night in bed whilst still awake but with eyes closed,that I still have slight jerks.

I am seeing a neurologist but he has no answers and is sending me to a sleep clinic.
My question to everyone is that why is this happening when I close my eyes only (this is what I find weird).  It does not really affect my sleep but I am worrying now about the fact it could be early menopause (I am 37)as some people seem to be suggesting.

Can any one let me know if they are experiencing any such thing.

Thanks
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Hi Lou,

I know exactly what you are feeling....I have been there.

The most important thing for you right now is to try not to let this freak you out anymore. It's hard because you are sure your life and your sleep will never be normal again. right? It will be normal again, I promise.

I have done literally hours and hours of research on this thing. What I can tell you is that the central theme I have found is that unrelenting stress and anxiety seem to play a key role. I think the stress depletes our bodily resources which is why suppliments and electrolyte balancing (like power aid or gatorade  help) It is very easy to develop sleep anxiety once this starts and this will make things SEEM worse and also keep you from going back to sleep if you wake up during the night.Try to keep things in perspective.  Also, chronic pain or discomfort is a trigger for these jerks so if there is anything that is making you uncomfortable in or out of bed fix it.  Get a feather mattress pad and a great new pillow. I know these things sound like minor things but all of them have helped me and the cumulative result has made a huge difference. When you are trying to fall asleep tell yourself it's ok if you feel a few jerks, eventually you will fall asleep. The more you can manage the anxiety this can produce the shorter the cycle back to normalcy will be.

Don't be to hard on yourself about how you have managed this thing. Wine works great for me too. If you need it, do it. I know you are waking up after a few hours and this is common but if you can relieve the anxiety about falling asleep it will help you.

Don't despair, you will get to a place where this is not a big deal. I know EVERYONE has jerks, I think the difference is how we react to them. My husband has them everynight, believe me, I'm a witness, but they don't bother him. I think it is because he doesn't react to them and therefore they don't cause the anxiety and produce the adrenaline rush. I would say he has at least 10 as he's falling asleep!

Stay in touch, Lou and don't be afraid and upset. Things will get better!

Lele Bug

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Thanks a million for your reply.
It really helped.
I slept last night!  YEAH!!!!!
I probably drank two gallons of Gatorade.

You are absolutely right about the stress building up and worsening it. I woke up once during the night and felt a few jerks. I thought about what you said about your husbands way of ignoring them and not allowing the anxiety to take over. I was able to fall back to sleep shortly.
What a difference a good nights sleep makes.
I'm keeping my fingers crossed for tonight.

I can't tell you how much I appreciated your response.
Thank you for your kind words.

I'll repay you buy doing something helpful for someone else.





-Lou
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I'm so happy for you!...I really believe getting on top of the anxiety is the key.

I know you can beat this thing.

If you feel the anxiety coming take deep breaths from your abdomen. Meaning, push your stomach out when you breathe and this will keep you from breathing shallow which will make you feel lightheaded and spacy (hyperventilation). You will be surpised at how quicly the anxiety dissapates.

Also, I'm serious about the feather mattress pad and pillow. I LOVE my bed now, it's sooooo comfortable and I look forward to going to bed. I think it is important to associate your bed with comfort and positive thoughts. If I wake up in the middle of the night I just think about how comfortable I am and I go right back to sleep. If I feel a jerk, I just think "oh well, they won't last long" and they don't!

I'm so glad that you are doing better. If you have a bad night don't let it set you back. Just keep doing all the things you know will work.

Please let me know how you are doing! I'll help anyway I can!

Sweet dreams

Lele Bug
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Hi Timebomb,
I am 47 , and my symptoms are aexactly the same as yours..........mine started about 2 months ago......the first twitches I noticed where in my stomach (felt like a baby kicking), and now they have spread everywhere..........how annoying. Heaps of women our age on the net have them. Although men get the too I think our anxiety levels are higher during peri menopause so make us more likely to get them in this age bracket. They are VERY annoying.
I have been trying the tonic water and magnesium calcium supplement , and eating bananas........and I think it has helped a bit.Some days and especially nights are worse than others for me.

Take Care all.
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Hello Again.

Well, I guess I jumped the gun.

I've had 3 bad nights in a row. Unable to fall asleep. Up most of the night.  I've been a daytime Zombie.

I read about taking Magnesium which I did yesterday.
Last night I finally fell asleep with no problem. No wine either.
Slept from 11pm-7am.   I tried to sleep longer but the jerks came back this morning..
Hands, legs, torso, neck. It just kept jumping around. It's bizzare. They seemed stronger and more often.  

Does this morning jerking  happen to you Lele Bug, or anyone else who's reading?

I'm trying very  hard to stay relaxed about this.
I'm working on the breathing you suggested and am making my bed more comfortable.

I really don't want to see a nuerologist. It sounds like a waste of time from all that I have read. Plus, I am an artist and have no insurance.

Any other suggestions?


thanks,

Lou






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Hi Lou,

I'm so sorry you are having a bad time. Take it easy on yourself and be patient. You'll get through this.

So you got to sleep last night ok and got 8 hours. That's really good. Don't let the jerking in the morning get you down. I get it too. Just go ahead and get up if you've had enough sleep.

Keep up with your electrolytes (try the new Power Option, it works best for me)take a good supplement and, get your room just the way you want it and try to relax. Drink a few glasses of wine at night if you need to. And go see your regular doctor and see if he can give you something to take the edge off right now.

Are you under alot of stress right now? If you are anything you can do to help manage that will help.

I hope things will get better for really quick. Be happy with the good nights and don't let then bad ones get you down or freak you out.

Keep in touch,

Lele Bug



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Oh, and I have read in alot of different placs that caffeine, nicotine and refined sugars can make these worse lay off all that stuff!

Makes a huge difference for me... My daughter and I watched a movie last night and I ate some of her sour patch kids. Wow, thought I was going to junp out of my skin!
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Thanks Lele!,

I'll give it all a try. Cut out the caffeine and sugar. I dont smoke. I'll give the doctor a call too.

I can't say that I'm stressed about anything out of the ordinary. Just the usual everyday stuff. No big event that started this. The only thing  I can think of is that I had bad seasonal allegies and was taking alot of benedryl.



Have a good week,

Lou

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Hi Lou,

Was just wondering how you were doing......Let me know.

Lele
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Hello everyone,

Was reading this thread with interest.  Sounds to me like what you all are describing is more than hypnic jerks, but rather PLMD (periodic limb/leg movement disorder).   I think that hypnic jerks happen just as you are falling asleep and don't usually bother much.  But PLMD is another matter, jerks over and over again, and in my case electric feelings as well.  And also in the morning and almost anytime I sit or try to rest.  

I also have restless leg syndrome, and a lot of folks with RLS also have PLMD.

The good news is that some of the medications such as Mirapex and Requip can really help both of these maladies (but not always).

I think you all are on the right track with minerals such as magnesium and low carbs and low sugar etc.   And yes indeedy, stress plays a big role for me also.

Wish you all good luck.  It's difficult to deal with.
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I am 46 male, athletic.  Jerks started hitting me 3 months ago just as was falling asleep.  In that limbo of not asleep, but on the way, yet aware.  One night it's a leg moving, another it is an electric "jolt" upper body.  Lasts a second or millisecond.  Then in am, upon waking, sometimes a slow rise of a finger or a slight jerk.  Drives you nuts.  Good luck all with the sports drinks.  I drink a propel daily (avoiding the high sodium and sugar in gatorade) with no effect.  The jerks actually started about the time I started the propel ironically.
My internist has me on 1 mg of Klonopin.  That gets me to sleep.  Some nights, no jerks before falling off, some nights a jerk or two.  I take the pill about 30 min. before bed.  Wine has the same effect but with wine I wake up in mid of night often, unlike with the drug.

When you first google these symptoms you get parkinson's and als concerns, but, apparently, these things are happening to normal healthy folks.
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Hi Lele,

Thanks for inquiring about me.

Hope you are doing well.

Anyhow, I found some info on the net that said that prolonged use of benedryl can cause twitching or jerking at night.
I stopped the drug and my jerks dissapeared for 2 weeks.
I then went on a short vacation where I had to sleep on an air mattress. The Jerks came back but disappeared when I went back home.  It must have something to do with a comfortable bed after all.

I still get them once in awhile in the morning. Over all, I'm doing much better.

Stress in definately a factor.

Good luck to all.

Lou

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Lou....Good for you.  Congratulations!  Enjoy your sleep...Shamrock
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I have read this and past forums recently. Thanks to all that made postings it sure helped me understand what I was experiencing.  I am 54 year young female that started with the sleep starts that jerked me back from sleep just as I was drifting off about 2 1/2 years ago.  This gradually led to mild muscle tics then do pronounced jerks that would wake me up in the night. I also take HRT and have taken medication for adult ADD for 11 years.  The onset seemed to be when I switched from the Ritalin for my ADD to Straterra, a newer non-stimulant drug for ADD.  I experienced a change in my sleep in that I seemed to spend the whole night in active dreaming and I was aware of this as I slept.  Prior to this I rarely was aware that I was dreaming although I'm sure I did.  To complicate the problem, it was right about around this time that I stopped my period so I'm not clear if the change in sleep was due to the medication change or the hormonal change.  I do know that even after I switched back to Ritalin, the symptoms didn't go away.  I finally stopped taking any ADD medication at all for a few months and went to my doctor with the symptoms.  The reason I stopped the ADD meds was because I wanted to rule that out as the problem.  He gave a preliminary diagnosis of Restless Leg Syndrome and send me for a sleep study.  The study confirmed that I was spending a disproportionate amount of time in sleep stages 1 & 2 and not enough in 3 & 4.  This explained why I was so tired and exhausted all the time.  He prescribed Requip and I have been taking it for about 2 months.  I looked up Restless Leg Syndrome and didn't feel that was the correct diagnosis so did more research and after reading these postings am sure that I have Hypnic Jerks and possibly PLMS.  The thing is that I experience the muscle jerks primarily in my shoulder area although sometimes in other areas.  The Requip seems to help and I am sleeping better but I am noticing it is inconsistent and that there is a cycle to this.  I still feel symptoms of ovulation every month and it seems that when this happens I
suddenly get super charged with energy and am still wired at night when I want to go to bed.  I will often lay awake for several hours.  As the month goes on this gradually lessens until I am sleeping okay but then I start to experience tiredness earlier and earlier in the evening.  As I said it seems to be cyclical but it has only been two months so I will have to evaluate it more.  I don't think that my symptoms are affected by stress.  I'm thinking that my sleep level is the problem since most people seem to have these jerks.  I can't believe how many I have told this to who say that occasionally have hypnic jerks.  They only become a problem for me because I believe my sleep isn't deep enough.  Whether this is caused my hormones, aging (sigh), or ADD I don't know.  I was wondering if anyone else with ADD saw any patterns like this or if the onset of menopause changed things.  For now at least I am getting some sleep so I am not going to stress out about it too much since it seems there isn't much I can do about it at this point.  Seems like there are lots of different reasons that people experience this but I personally know how it can affect the quality of life.  Good luck to those of you that are still trying to find what works.
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Hi All,

Well, here I am again.
It is getting worse. I have had two nights in one week without sleeping at all.
It's mainly twitching in my hands,lower arms and chest. It's happening as soon as I relax a bit rather than just as I'm about to sleep. Every five minutes or so , all night long. I'm getting a few large jerks a swell. I have a constant twitch in my right forearm during the day. I have tried ice packs which make it go away temporarily.
Over the counter sleeping pills have not helped. I took one last night and was still up the entire night.

My family doctor suggested I see a Neurologist. he said it sounds like something is pushing on a nerve. However, I have no pain in back or anywhere.
My only symptoms are the twitching.No headaches, muscle weakness, slurred speach.

I'm wondering what I might expect to have done when I visit the Nerologist.
I am without insurance. Can anyone give me an idea of which tests might be done from your own experiences?

Is an MRI a first step or a last one?

lou

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Hi Lou....Sorry to hear they're back.  But I must say I'm not surprised because from my own experience this is pretty typical.  

I'm also sorry to hear about the twitching during the day.  I used to have twitching in my calves during the day and evening whenever I relaxed, kind of in the fetal position when I would lay on the sofa and watch TV.  I got these the same time in my life when the hypnic jerks started at night.  The twitching in my calves is still with me but not constantly.  Sometimes it will bother me but I think I've just learned to live with it over the years.

I had an ultrasound, an EEG and a MRI.  All proved nothing.  Even the two sleep studies I had just said I moved around alot.  I eventually found a doctor that listened very intently to me as I described the jerks and knew what I was talking about.  I was prescibed medication which helped immensely.

I would suggest you find a good neurologist that specializes in sleep disorders.  That's what I did.  Do you have a renown facility near where you live?  I drive almost 4 hours to see my neurologist and it is worth it. Just a suggestion.  
Good luck...Shamrock
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Hello Lou and Shamrock,

I have some news. I am hoping that I am on the verge of an answer. Here it is.

I went to see a Neurologist. I was having some headaches and other symptoms along with the sleep problem . He ordered an MRI of the spine and the brain.

In the meantime I had found something interesting on the web. Here it is:

Propriospinal Myoclonus of Sleep Onset

What is it?

These are sudden, rapid, shock-like muscle contractions. They occur with variable regularity and in a changing pattern. These sudden muscle jerks occur when you are relaxed and close to falling asleep.

The muscle jerks are only rarely triggered by noise or external sources. They disappear as soon as you fall asleep or become mentally alert. Only rarely do they occur when you are awake during the night or in the morning.

Movements tend to occur in the chest and abdomen. They then spread along the spine to the arms, legs and neck. The intensity of the muscle jerks may vary. They may come and go. They may also occur in clusters separated by long gaps of time. You do not normally make any vocal sounds when they occur.

This disorder can make it very hard for you to fall asleep. This results in symptoms of insomnia. Injury to oneself or to a bed partner has been known to occur.

It is sometimes confused with normal
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Hi Lele and Shamrock,

Lele,
Thank you for sharing  your results.
I
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Hi Lou,

Thanks for all your kind words. I am very optimistic that all will turn out well. I have a wonderful family and group of friends that are very supportive. I am sure I will be fine.

I was talking to my sister yesterday and she mentioned that she works with a christian organization that arranges medical care for working people that do not have access to medical insurance like artists. If you can tell me what city you are in I can have her check to see which is closest to you. She said it is somewhat of a chore to get qualified but once you are it's great. You can get all of your MRIs, surgeries etc. for very little.

I feel certain that we are on the right track with this thing. I may have to address this tumor before I can get this nerve compression taken care of but I will know alot more this week. I'll keep you posted. It looks like our thread on this forum is about to drop off into the archives so we may need to start a new one soon so keep an eye out for that.

Hope things get beter for you in the meantime and you can get some sleep. Try the melatonin again. I've had some good results with that at 3-6 mgs.

Take care,

Lele
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Hi Lou,

I forgot to answer your question about other symptoms.

I really don't have any other nerve compression symptoms other than I have some neck pain. Mine also pops and has a grinding sound when I move my head back and forth. Hope that helps

Lele
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Thanks, Lele.

I just sent off an application to an insurance company. I should here something back from that soon. Thanks for the offer from your sister. I'll let you know if they decline me.

Funny you should mention the melatonin. I read online about it helping for children with  propriospinal myoclonus. I thought I'd try it again.
Melatonin and a little wine put me to sleep last night. I slept 6 hours and woke up at 5am. The jerks started up. I took another small dose of melatonin and was able to fall back to sleep for another 3 hours.
I haven't slept that long in a week.

Good luck this week.
Thanks for keeping me informed.
I'll keep my eye out for the thread to run out.

-Lou

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Hi all,

I'm new here. Just started experiencing these jerks steady for the last few weeks. Only happens when I am about to fall asleep. EVERYTIME. So for the first few nights I didn't get any sleep. Very depressing. I found that taking .5 mg of ativan everynight stops the jerks completely. I end up sleeping sometimes 9 hours. Problem is that it makes me groggy all day. Just cut down to half a dose and it worked, but still groggy. I'm seeing a holistic doctor who believes it's hormones. I'm 48 and in peri-menopause. He wants me off the ativan but I'm not giving it up until I find a natural answer.  

Lost my job a few months ago and need to get back to work but can't cuz I'm so tired. Also about to lose my health insurance. Scary and stressful.

My reg med doc says the jerks's are nothing serious because I only get them when I'm about to fall alseep. He thinks they are caused by stress.

Still contining my holistic approach to heal this problem. If I find a solution I'll share it with all of you. Thank you for all your information and direction.

Lele, I know a few people who have had brain tumors and years later after surgery are all doing great and are exceptionally healthy. I admire your strength. You are an inspiration. Thank you.
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Hello there,

Thanks for the kind words. I am really confident that things will be ok. I know that through all of this there will be an answer, a clearly clinical one, to this thing we have. I am commited to getting to the bottom of it. I won't give up, you don't give up either.

Lou, I was thinking about your insurance application. You may have a waiting period regarding pre-existing conditions. Just make sure you check that out. If you need my help with the other options please let me know.

Blessings to all,

Lele





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Thanks Lele for your gift of determination.  I won't give up either because I refuse to go through my life with this. Has anyone tried a Chiropractor? And has anyone had these symptoms...fast heart beat and a feeling like you drank 100 cups of coffee?
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A related discussion, Hypnic Jerks was started.
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I've been suffering from these jolts the last 2 nites in a row and here and there etleast a good month. I've read a lot of your forum and its realy helped. This started mostly after I started medication "celexa". I had to start taking that along w/another because of an extreme panic attack I endured right before Christmas because of some serious stress. I drink vodka too much and getting help for that soon; hence I only get jolts if I'm awaken during nite @ whatever time. But the jolts are relentless! And I just try to sleep a few jolts then  just give up. Please someone talk to me.  I'm able to fall asleep (probibly the alcohol) witch I'm gonna quit! But if I wake up for any reason wham! There back. Someone help, my email is hangn.***@****
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A related discussion, Does requip work for proprospinal myoclonis? was started.
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