Im not a big jerk, just lots of little ones.

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brian briggs
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Joined: Tue Oct 13, 2015 7:50 am

Im not a big jerk, just lots of little ones.

Post by brian briggs »

Hi there,

around two years ago I was given a Lorazepam to help me sleep one night (after visiting the emergency award for something unrelated to sleep) and have had mycolonic jerks ever since. I took Mitrazapine for 6 months afterwards to help me sleep. I was fine for about 4 months after coming off the Mitrazapine and then it all came back much worse. I later found out that Mirtrazapine makes rls worse (thanks doc).

I am currently getting between 5 and 6 hours of sleep thanks to Relora and L-Theanine, however obviously I would like more sleep but the jerks (all over my body) keep me from sleeping. Ive been told they will go away, but its been 2 years now...

Tried going ketogenic to see if that would help but it just gave me headaches and dizziness and so stopped.

Any help would be gratefully appreciated as I often feel like Im losing my mind with it all.

More information about my case is here - http://benzowithdrawal.org/viewtopic.php?f=12&t=511

ViewsAskew
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Re: Im not a big jerk, just lots of little ones.

Post by ViewsAskew »

I wish I knew something to tell you. PLMs used to be considered myoclonic, but they aren't any longer, so not sure our knowledge will help you. I've seen, on Benzo forums, of others with the same problem. I had a horrible withdrawal period from clonazepam, but that wasn't one of my issues.

I can imagine how frustrating this might be. What does your doctor say, out of curiosity?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

brian briggs
Posts: 6
Joined: Tue Oct 13, 2015 7:50 am

Re: Im not a big jerk, just lots of little ones.

Post by brian briggs »

Thanks Ann.

Sorry Im so confused. So what do I have, is it myoclonus, hypnic jerks, plm, rls?

So none of the info on this forum is relevant to me? If so, do you recommend where I go instead?

I had a sleep test a year ago and the doctor said my legs move 6 times the normal amount and told me to stop taking the mirtrazapine as it makes the movements worse. Isn't this rls?

Rustsmith
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Re: Im not a big jerk, just lots of little ones.

Post by Rustsmith »

Brian, movement during a sleep study can often result in a diagnosis of PLMs (Periodic Movement during Sleep). Simply moving during sleep is not PLMs, there has to be a regularity to the movements.

The statistics say that about 15% of people with PLMs also have RLS. To determine whether you have RLS, take a look at the questionnaire from the International RLS Study Group, which you can find at http://irlssg.org/diagnostic-criteria/. There are a couple of keys to the questions they ask, chief of which is whether moving the limbs in question resolves the need to move them.

As for whether this is the right place if you have PLMs and not RLS, there are several points to consider:
1, 85% of people with RLS also have PLMs
2. the treatments for PLMs are frequently the same as those for RLS

So, now for another question for you. Following your sleep study, did any of you doctors prescribe any medication to help reduce the movements?
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

brian briggs
Posts: 6
Joined: Tue Oct 13, 2015 7:50 am

Re: Im not a big jerk, just lots of little ones.

Post by brian briggs »

Thanks Steve.

My doctor recommended a medication used to help people with Parkinsons (I forget the name of it). I kindly refused.

Rustsmith
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Re: Im not a big jerk, just lots of little ones.

Post by Rustsmith »

It sounds like your doctor probably recommended one of the dopamine agonists (pramipexole/Mirapex or ropinerole/Requip). Either of these is used to treat both RLS and PLMs and will provide dramatic relief in the short term. Unfortunately, both have problems that occur in the future with continued use. If you search for augmentation on the board, you will see quite a bit about the problems that occur, but that many physicians know little or nothing about.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Im not a big jerk, just lots of little ones.

Post by ViewsAskew »

brian briggs wrote:Thanks Ann.

Sorry Im so confused. So what do I have, is it myoclonus, hypnic jerks, plm, rls?

So none of the info on this forum is relevant to me? If so, do you recommend where I go instead?

I had a sleep test a year ago and the doctor said my legs move 6 times the normal amount and told me to stop taking the mirtrazapine as it makes the movements worse. Isn't this rls?


Hope that what Steve said helped. Here is what I meant.

When you said you have myoclonic jerks, I assumed that a doctor diagnosed you with that. There are many types of movement disorders, and they are treated differently. Here, we primarily deal with RLS (also called WED, or Willis Ekbom Disease) and periodic limb movements, or PLMs. PLMs, as Steve noted, are rhythmic and happen in a very specific way - the limb move from the joint and there is a flexion that lasts for a second or two, then the limb relaxes. There are two distinct disorders related to the periodic movements. It's called PLMs when you have another sleep disorder such as apnea or RLS. When you have NO other movement disorder, but you have these periodic movements, it's called PLMD - the D stands for disorder.

Some people have PLMs and they are not bothered by them. Others of us are terribly bothered. So in addition to having them, in order for them to be treated, you need to know how often they awakened you. Do you have a copy of your sleep study? That would tell us a lot.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

brian briggs
Posts: 6
Joined: Tue Oct 13, 2015 7:50 am

Re: Im not a big jerk, just lots of little ones.

Post by brian briggs »

They are more like muscle twitches (hypnic jerks?). For example, the end of my finger, neck or stomach muscle will twitch just as Im about to fall asleep.

>Do you have a copy of your sleep study? That would tell us a lot.

I have it on paper here - http://1drv.ms/1LCrVPf

I have a sleep tracking app which I can upload if that is better?

I can get to sleep on theanine/relora but it wakes me up about 4 to 5 hours later and it won't let me get back to sleep because I am not tired enough and I guess the effect of the theanine/relora has worn off. Taking them again does not work. Melatonin makes me tired does not subdue the jerks.

Rustsmith
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Re: Im not a big jerk, just lots of little ones.

Post by Rustsmith »

What you are describing certainly sounds like it is an involuntary movement that would be described as a hypnic jerk. The RLS movement sypmtoms tend to be under voluntary control, which means that we can mentally override the movement, but that override becomes increasingly less comfortable. My personal description is that it is like there is pressure building up within the nervous system and if I wait too long, then the involuntary system will eventually override the voluntary control and results in a jerk. But this almost never happens because of the increasing discomfort of the building "pressure" in the nervous system. Further, getting up and moving around relieves this need to move for as long as you are moving. Sitting or lying down eventually allows the need to move to return. This is the basis for the questionnaire that I provided the link to earlier in this discussion thread.

The insomnia side of RLS has been described as a separate effect where the mind goes hyperactive at about the time that you need to go to bed. You feel very tired, but the mind does not slow down enough to allow you to fall asleep. The insomnia side is not really addressed in the RLS diagnosis questionnaire, but is something that most of us experience.

Then there are the PLMs that Ann and I have already discussed. These occur either just as you are falling asleep or afterwards. They occur on a regular period. During your sleep study, if you had sensors attached to your legs, these were to for the regular monitor movements of PLMs. The less technical way of evaluate for PLMs is to ask the patient's bed partner. Usually the bed partner reports getting kicked on a regular basis during the night. I have seen where some doctors do a tentative diagnosis of PLMs by looking for bruises on the patients legs. These are where the bed partner gets tired of being kicked and kicks back before leaving to go sleep somewhere else.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

brian briggs
Posts: 6
Joined: Tue Oct 13, 2015 7:50 am

Re: Im not a big jerk, just lots of little ones.

Post by brian briggs »

Thanks for the explanation Steve.

So, excuse my bluntness, but am I wasting my time on this forum?

Rustsmith
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Re: Im not a big jerk, just lots of little ones.

Post by Rustsmith »

That decision is one that you need to make. However, from what you have described, I suspect that the answer may be yes.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

brian briggs
Posts: 6
Joined: Tue Oct 13, 2015 7:50 am

Re: Im not a big jerk, just lots of little ones.

Post by brian briggs »

Can you recommend a relevant forum?

ViewsAskew
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Re: Im not a big jerk, just lots of little ones.

Post by ViewsAskew »

brian briggs wrote:Can you recommend a relevant forum?


I haven't a clue.

Thanks for the study you posted - I can't read that, unfortunately. Do you have the written results that captured how many movement, and so on? That I can interpret.

Hypnic jerks aren't studied - they are considered normal and are not treated. If you PLMS, the same drugs that treat RLS are used, specifically the dopamine agonists. Some of us here (such as myself) who have worse PLMS than RLS, find there isn't much research available for us. One of us uses a TENS unit, some of us suffer, some of us use whatever drugs we find help.

Most important for you is to determine WHAT your movements are. Then you'll know what forum to join. If they are PLMS, this is one of them, but we really don't know much about it, so there isn't much to talk about. If you have true myoclonus, I suspect there is a forum for that, though I've never looked.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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