Nocturnal myoclonus

[Vinagirl]

I have nocturnal myoclonus, which is not restless leg syndrome but does respond to iron supplementation and pramipexole. Are there any others out there with nocturnal myoclonus aka periodic limb movements of sleep?

[Hidden]

Alot of people have PLMD and pramipexole can be used to treat it and to treat RLS. Some people can just have PLMD or just have RLS or have both. I just have RLS.

[Hidden]

I have both RLS and PLMS.

[Vinagirl in reply to Hidden]

Oh my.... double whammy...... pramipexole can make myoclonus worse as I well know. So I am kicking and jerking day & night. My neuro trusts me to find the right combo. At this point I am on pramipexole O.25mg and clonazapam 1mg taken about 1.5 hour before bed.

How are you coping and what works for you?

Karen

[Keitha in reply to Vinagirl]

Karen, that is the exact drug regime I am currently on. It's not doing the total job for me, so I supplement with other OTC products. Is it totally working for you?

[Hidden in reply to Vinagirl]

Are you asking how I am coping with the PLMS?

[Vinagirl in reply to Hidden]

yes

[Hidden in reply to Vinagirl]

That is very hard to answer. Since the movements are uncoscious, there is not much I can do.

What I will tell you, though, is that I went through some recent medicine (antidepressant) changes that I swear has helped. Starting last month, I have had increasing periods of time when my legs have been completely still. No micro, insect-crawling movements, nothing! It has been wonderful!! I believethat this is making a difference because I am more awake during the day. One of the things reported by parients that lead doctors to test them for PLMS is experiencing excessive daytime sleepiness (EDS).

[Vinagirl in reply to Hidden]

I am so glad that you have found relief with an antidepressant change. I think this is my next step

I am on an SSRI, but I am reluctant to change it. In the past, I did not have any success with other antidepressants.

It has been more than a year since I have had intolerable PLMS. The thought of having more depression, while trying new antidepressants is... well.. depressing.... (lol) but also anxiety provoking. I live in a new city, so hopefully I can find a good psychiatrist.

I also have MS and went on disability 2 yrs ago. I have profound physical and mental fatigue. A year ago when I started on gabapentin and neupro for PLMD, my ambulation declined and I could barely get around the house without help. I really gave the gaba and neupro a good 4 week trial, but it didn't work. I was so fatigued and sleepy!

I also want to talk to my neuro about cannabis. Any experience with it?

Thanks for you support! Much appreciated!

[Hidden in reply to Vinagirl]

You’re welcome!😀 No experience with cannabis.

Good luck with everything!

[Vinagirl in reply to Hidden]

Update: I saw. MD who can prescribe cannibis. I live the in Florida where forms of cannabis are legal, and am awaiting my state card. The doctor is hopeful since cannibis works for people with myoclonus forms of epilepsy. Hopefully it will work for nocturnal myoclonus (PLMD) If you like, I will send you an update once I finally get the CBD oil.

By the way, I was able to clutch my SSRI dose by 1/3, but no improvement. I have cut my sugar intake drastically which has helped.

I hope you are doing well 😊

[2islandboy]

Yes, I have it. My RLS seems to have gone quiet, but now this... I did not know what it was. Now it has a name! Mostly in my chest and arms. It feels a little like a mild seizure.

[Henshaw241241]

Hi I take pramipexole I have rls for year climbing the walls and walking outside get fed up with it sometimes works but at last I have been waiting for 6 months to see a neurologist on Wednesday I go I don't know what they do sorry I can't help you all the best X Tony

[Vinagirl in reply to Henshaw241241]

6 mo to see a neuro...... that’s a long wait. I’ll be thinking of you on Wed,

Let me know about your neuro visit

[Keitha in reply to Henshaw241241]

Just curious - where do you live that you have to wait 6 mos to see a dr?

[Pippins2 in reply to Keitha]

I would hazard a guess UK x

[Henshaw241241 in reply to Keitha]

Hi keitha I live in bognor Regis West Sussex and with that my appointment was to day then I had a call from the hospital saying it has been cancelled because he has gone sick that's all I want Tony

[Hidden in reply to Henshaw241241]

Oh, how lovely! I am so incredibly sorry. I really feel for you because I also live in a place where the waiting lines can be ridiculous! I hope, hope, hope they will give you an appt. as soon as he’s back. Or? Please let me know. If they do put you back in a line (which would be highly unfair), feel free to send me a message and I’ll support you in getting through until your next appt.

Where do you live? I’m in Oslo, Norway.

[Vinagirl]

Be sure to ask about a blood test called “Serum Ferratin”. That will determine if you have a particular type of iron in your blood. Mine was very low and my primary care doctor prescribed a certain type of iron pill. I had distinct improvement in 2 woks.

[Pippins2 in reply to Vinagirl]

Ferritin iron levels shows how we store iron x

[moonhunt18]

How does one determine if they have PLMS?

[Hidden in reply to moonhunt18]

Since the movements connected with PLMS are unconscious, a sleep study is the only way to get a diagnosis.

[Pippins2 in reply to moonhunt18]

My hubby told me that I kicked all night so his bruises proved it lol x

[Vinagirl]

A doctor would order a sleep study

[Vinagirl]

Follow up from 10 mo ago (better late than never?). CBD oil has been incredibly effective for me!!!!! Let me know if I can be help.