MYOCLONIC JERKS.

Posting this for some who might find it helpful. These jerks are different from RLS and PLMD, but i have read of people who experience these jerks and have RLS.

ninds.nih.gov/disorders/myo...

[Twenty-four7]

Thank you Elisse. I have RLS and PLMD. I also experience myoclonic jerks. When I have spoken to my doctor about the jerks he was not bothered about them at all. He said lots of people experience them, and they were perfectly normal. What has really frustrated me through my RLS journey is the lack of knowledge and support from the medical profession. I was on Ropinerole but didn't take to it that well, then went on to Pramipexole, which has provided some relief and I have been on for some time now. I also take Zopiclone every night.

Last week I saw a young doctor associated with my sleep clinic, and he prescribed Gaberpentin to me. I have been on the smallest dose for about a week now, and it appears to be having a significant effect. I am no longer experiencing the jerks, and have had two or three really proper sleeps (7 or 8 hours!). That is still combined with the Pramipexole and Zopiclone of course. I will probably give it a while and then see if I can reduce the nightly Zopiclone dose.

All this is very encouraging. Gaberpentin is used to treat epilepsy and neuropathic pain, and it makes sense to me that it might work for my particular condition. What has really frustrated me though is the amount of time it has taken me to get to this position. It is 3 years since I was diagnosed with RLS, and before that I had struggled with it endlessly for years without a diagnosis. Despite numerous discussions with my doctor it took a mini breakdown and the recommendation of a cognitive therapist for me to be sent for the initial sleep study. I was made redundant last year, and I think this was as a direct result of the issues I have had with RLS. If there is one thing I have learned through all of this it is that doctors know very little about the condition, and that I need to become my own physician. Struggling manfully, or womanfully, gets you no-where. My advice to others would be to shout very loudly to the physicians when things are getting out of control. Do not be passive, thinking the doctors know better. Be prepared to try different drugs. The right drugs for you are probably out there, it is about trying them and determining which ones work for you.

[funnyfennel in reply to Twenty-four7]

I am now on pramipexole x2 and zoplicone occasionally and am getting some sleep but also v. sleepy in the morning...what doses are you taking ( took ropinorole fro 4 years and did not realise what bad effects until I changed drugs..interested in Gaberpentin, but hear that it puts on weight...for me need not to be too sleepy, so as I can walk and excercise (am over 60)

[Twenty-four7 in reply to funnyfennel]

I an on 2 x 250 mg Pramipexole ( though on a bad day I up it to 3), and now 1 x 100 mg Gaberpentin, which is the smallest dose. Regarding sleepiness, all I can say so far is that my sleep at night has improved. A peculiarity of my condition is that it gets far worse in summer than winter. My body overheats alarmingly. I wake up daily at between 4 and 5 am. Because I have started the gaberpentin at the end of summer it is difficult to assess which is causing the sleep benefit, the cooler conditions or the drug. So far, my daytime sleepiness has not improved dramatically, but if I was being optimistic I would say it is improving. I can go through periods of extreme sleepiness during the day, which comes in waves. This seems to have finally snapped my sleep clinic into action, who are finally being a bit more pro-active. It appears that excessive daytime sleepiness is the measure by which they respond.

[funnyfennel in reply to Twenty-four7]

Thanx...we are all different, but agree cooler weather suits me too...and a fan in the bedroom....do you work...perhaps that keeps you awake?

[Twenty-four7 in reply to funnyfennel]

Not since I was made redundant last year, though fingers crossed I will be working again soon. I have found though that working or not the RLS levels are the same. That is a concern in itself, as being sleepy during the day is not generally seen as being too productive, unless you are a bed tester that is!

[M4gill in reply to Twenty-four7]

I totally agree with everything you have said. I too suffered for years and felt as if I was talking to a brick wall. I was under a neurologist for years and I was given countless amount of tests e.g MRI scans ct scans electrode tests, too many to mention, this took over 10 years while getting prescribed all sorts of medication.

Eventually the neurologist literally put up her hands and looked at me and her exact words were "well, we have came to the end of the road". I was flabbergasted and felt totally devastated that after all those years this doctor was just giving up on me, as if everything was all in my head and she wasn't prepared to help me.

I just broke down and told her that I was nearing the point of suiside because I couldn't live like I was any more. Eventually she said the only other thing she could do was refer me to another neurologist for a second opinion but in her opinion there was nothing physically wrong with me.

After waiting nine months I eventually got an appointment with this other neurologist and was stunned when within 5 minutes of me describing my symptoms he diagnosed RLS. I had never heard of this ever before. He told me about a doctor who specialised in this particular disease, you have no idea how relieved I felt to be finally told that this horrendous experience wasn't all in my head, that it really did exist and I wasn't going off my head.

That was 3 years ago, I have been seeing this specialist who has been a godsend to me to finally find someone who understood what I was going through. He told me it could take a long time to get my symptoms under control as different medications help different sufferers and it would be a matter of trial and error, until they found what medications would help me.

Unfortunately they haven't found the right medication for me yet, I am still in the process of trying different medication, although my symptoms aren't as severe as they were, they are still severe enough that I can't remember the last full nights sleep I had. But I will continue trying all these medications until they get it right.

But in my opinion half the battle is getting the medical profession to understand about RLS, maybe if more doctors knew what this was, people wouldn't have to go through what I did for years.

I now find myself in a position where I have had to educate my own GP because he had never heard of RLS before, but I must say he has taken everything I have told him on board, and is much more understanding than he was for all those years. He has made enquiries about this disease, And last week when I saw him (to get a prescription for new medication, recommended by my specialist) he informed me that he has since been able to diagnose 3 different patients from the surgery because of the information I gave him.

I am so happy that for the first time in years a positive has came from my suffering for years, 3 people have been diagnosed earlier than it would have taken if I hadn't educated my GP and their treatment can start way sooner than mine did and these people won't have symptoms as severe as mine is because I went so long untreated. I am grateful for that.

All I want now are two things, one, for the medical profession to be informed about RLS and to recognise the symptoms right away so that the patient can be treated right away.

And two to get the medication that is right for me, I so long for this and maybe one day I will get a full nights restful sleep

[pgb_48 in reply to M4gill]

I am writing, with the hope that it may help you.

I also have rls and myoclonic jerks. My neurologist recognised it (after ruling out various

possibilities, through yes or no tests) quickly. It was very very painful and difficult to explain my condition, symptoms. It is very recent, since about 5 months and was diagnosed 3 months back. Rivotril worked for me. I am still under medication: rivotril 0.25 mg. In between for a couple of weeks I took 0.5 mg per night. After reducing the dose to 0.25 mg, relief was not so good but I complimented the treatment with SuJok therapy (accupressure). Now I have got more than 80% relief. But my doctor says I have to take it for a few more months to get complete relief. He seems to be confident about the disorder and the medication. He tried to suppliment it with some other medicine (ropak or something ) and that did not give me relief. In fact it seems to have worsened the symptoms. Quickly, that was discontinued and I am taking only rivotril 0.25 mg every night. Hoping for the best.

Added on 14/02/2014:

Since 1st February 2014, (that is two weeks) I have totally peaceful nights with half dose of 0.5 mg (that is 0.25 mg) rivotril. My doctor says it usually takes about 3 to 6 months to recover and with this mild dose, I will not have any problem of dependency or withdrawal symptoms. He is also assuring that there are no side effects.

[Hidden]

It makes me sad when i read of people's journey to finding a doctor who will know exactly what is wrong and know that you have RLS.

Its not some thing that has happened to me, i knew i had RLS and when i went to see my doctor and told him of the symptoms i was having and said i have RLS, he didnt doubt me. I dont have PLMD or the jerks, just plain ole RLS, if you can call it that.

Glad to hear things have improved for you, i hope it continues...

[Kaarina Administrator]

Thank you for that link, Elisse. Mine started after a spinal op to prevent further thinning of my spinal cord. Sometimes much worse than other times, either as soon as I am in bed hoping to sleep or wakes me in the night . It is my foot and leg, either one limb or the other, never both. Atm I live with it. I suffer from RLS intermittently, thank goodness it has not reared its head for a long time. I am not having to cope with both atm for which I am most grateful. This does not occur every night. There seems to be no rhyme or reason. If one leg or other feels like partying it starts.

[Speedracer in reply to Kaarina]

Thank you for the link, very interesting, and depressing too, as it appears that I have yet another condition to add to the list that I carry around like a blinking anchor!

[Legs391]

Thank you. A lot of reading but at least I now understand my problem