Myoclonus and Sleep Deprivation

[SongStream]

Once again I turned on the light in the early morning, this time at 3 am, to view the show: a furious firing of fasciculations beneath the surface of my calf. This has been my ongoing living nightmare. Carbidopa-Levodopa, my latest treatment drug, is now failing. I have given up on sleep in the wee hours to cleaning or lieing in bed in mental torment. These episodes give my AMN dire thoughts and self pity. And another day fraught with modification. I am always reminded through my stream of health Enewsletters of the dangers of poor sleep: buildup of plague in arteries and brain; higher cardiovascular risk, dementia, cancer, etc.... Most noticeably is the poor balance and gait along with cognitive stupor.

Am I sentenced to a lifetime of drug trials?

Update 2/7/19: I met with my new neurologist since my long time neuro retired and she prescribed Keppra for the first line of defense. Titrate up slowly per instructions to max of 4 tablets at bedtime at 500 m.g. each.

2/10/19: The next day after beginning Keppra, I had a sleep hangover which affected me until the afternoon. Yesterday and today was much better and I found relief along with sleep. This drug is an anticonvulsant and I hope I have some longevity before becoming resistant.

2/12/19: Myoclonus returning. Have to wait until 2/14 before increasing dosage. Note there has been no sleep "hangover" since 2/10.

[julie_]

I am so sorry to hear this. I hope you'll be able to find some relief. My thoughts are with you.

I have been having interrupted sleep as well. My body tends to start aching and the pain wakes me. Usually I can usually fall back asleep but it can take an hour. Sometimes I'll wake at 4:00am and not be able to go back to sleep. Then I'm wasted the next day at work in the late afternoon.

Would it help if you change the spot where you sleep? I've gotten up out of bed to go sleep on the sofa, not necessarily lying down but in a comfortable, non-restrictive sitting position. That's helped me.

[SongStream in reply to julie_]

Unfortantely, the foot twitches are involuntary and I have numerous bathroom visits at night (notcturia) of which I will be addressing. I wish you relief.

[Cambridge_Chris]

I don't know how helpful this is, but I have found that my nighttime spasms are apreciably lessened if I have a heated bed.

I was finding (especially come the winter-time) that I had repetitive leg spasms on going to bed, which would keep me awake. Once my legs and feet were cold it was very difficult to warm them up (don't know if this is other people's experience?). A heated blanket really helped. I have now 'upgraded' (heh) to a heated matress cover, which I turn on about ten-minutes before going to bed. This has really helped me, but it is perhaps more to do with the leg spasms; I must confess, 'facsilliations' is a new word to me!!

All the best,

Chris.

[SongStream in reply to Cambridge_Chris]

Chris, I misspelled the word. It is fasciculations which is why it was a new word for you. : )

Feeling better today from having received some sleep. Prior night was 3 hours!

[monkeybus]

Sometimes I video my legs. Two days without Gabapentin will do it. Full fury. We should post them all on our YouTube channel (that doesn't exist).

I went easy on the meds last night, the spasms were phenomenal. Had to get on the tranquilisers around 3am, just to zonk myself out while my legs did their thing.

SongStream What drugs have you tried so far? I've posted before about how they stop working, or are less effective. It's not the correct word, but homeostasis seems about right to me. Our bodies know what is normal, and spasticity, pain, spasms, fatigue are "normal" for us.

Here are two (actually) serious questions. Maybe I asked before, but one more time:

Have you tried booze?

And

Have you tried marijuana?

Booze works marvelously, but I don't drink any more. Dope is like magic for neuropathy, pain and spasms (when it works).

[SongStream in reply to monkeybus]

Monkeybus, the first thing I did was to google videos and found quite a few. Here's one which describes mine. Nope, it's not me but this guy got a lot of views!

youtube.com/watch?v=i23DoNF...(Not working as expected?)

I wish it was just that but these nerves go down to the soles of my feet which produce the foot twitches. Funny, it never happens with both feet - only one.

I've tried Gabapentin (which I still use for nerve pain); Baclofen and Carbidopa-Levodopa.

I will be looking into Keppra; Klonopin; and Pramapraxielle which I've read on this board. And no Maryjane for me since I'm participating in the Minoryx trial. I should have tried it when I got my California marijuana card which was approved by my neuro.

[monkeybus in reply to SongStream]

A good vid. I really should upload mine, along with the one of me walking on 4-AP-3-MeOH.

I'll get on this.

[Aaron98 in reply to monkeybus]

Please do. We would all appreciate it.

[SongStream in reply to monkeybus]

We're waiting with bated breath..... : )

[monkeybus in reply to SongStream]

I'll need to find my tripod. My son wouldn't have the patience to hold the camera for more than five seconds.

I see the man in this vid has varicose veins. Having mine stripped really calmed down my spasms, like 100% gone at first, then 10% or so year on year after that. Keep meaning to have them stripped one more time.

[StevenSims]

Sorry to hear your problems! Are you on the Minoryx trial? Since I've been taking the drug my pain as gone! Spasms are less too! Hopefully this will be a medication for all of us soon?

All the best

[bluejadedwho in reply to StevenSims]

I hate to be negative, just realistic: even if it does show to be a beneficial treatment, it will likely be many years before it is available. I’m also in Canada, and we are the last to get approval for things. 😕

[SongStream in reply to bluejadedwho]

I now hope more research is done now that it is increasingly available.

[SongStream in reply to StevenSims]

Steve, you're so lucky! What a positive result! I think I have the placebo.

[StevenSims in reply to SongStream]

Hi, how long have you been on the trial? Sometimes the placebo effect can give pain relief? I've just had my 24 weeks appointment so I'm a bit in front of you I think?

All the best

Steve

[SongStream in reply to StevenSims]

Next week will be the 90 day mark. How long did it take to become pain free?

[StevenSims in reply to SongStream]

My wife noticed that I wasn't moaning or complaining after a couple of weeks!

[StevenSims]

Have you guys tried vitamin D3? This is the first winter that I haven't needed them? I don't think drugs do anything plus I worry about the effects on our liver also?

[bluejadedwho in reply to StevenSims]

Vitamin D, minimum 5000-10,000IU works great. Helps with sleep too.

[SongStream in reply to StevenSims]

Last summer, I gave blood to Dr. Van Haren at Stanford who is conducting a Vitamin D trial for ALD. It is a 1 year study where the first 6 mos. 2000 I.U. is given and then 4000 I.U. for the remainder. He suggests that we at least take 2000 I.U. Note that Vitamin D studies have been done for MS which provided positive results in lessening symptoms, etc....This probably bears much fruit since MS is more prevalent the further you are away from the equator.

[StevenSims]

I definitely think there's something in Vitamin D3! I used to take 5000iu a day! The Sun closer to the equator is best though! The active form in the blood stream has a half life of 24 hours though! I found that out as I had a amelioration on holiday then when home back I was the same!

All the best

[monkeybus]

I wish to God D3 worked for me. I take it religiously, might experiment and up the dose.

It messes with your calcium absorption (I think), I'll have to read up.

[COwithAMN Administrator AMN EASIER Volunteer]

Has anyone here tried melatonin? I mention this because I happened to read that Circadin is now available in the U.K. for NHS prescription. See meassociation.org.uk/2008/0...

[SongStream]

I've been using melatonin OTC since last year: time release and recently, fast absorption. Is melatonin not considered an OTC and available in the U.K.?

[Vinagirl]

My nocturnal myoclonus has responded incredible well to CBD oil. I get it through tnphe medical marijuana program in my state. You could also get non medical CBD oil via the internet. Dosing is a bit tricky at first. If I can be of help, please let me know

[JumpinBean in reply to Vinagirl]

Hi Vinagirl. I recently got approved by my state for medical marijuana for my myoclonus (also nighttime). I have a lot of confusion about the many varieties. I requested the CBD Dominant based on some reading I have done and the practitioner gave me a tincture/oil to swallow. She is starting me at 1 mg and said I can go up every couple of days over the course of 2 weeks. Can you share with me what is working for you? I feel like I am walking down a dark alley of unknowns with myoclonus and med marijuana and it could be helpful to know what has been helpful to you.

[SongStream]

Good to know, thank you! At this time I'm participating in the Min-102 clinical trial and using cannabis especially after I started, is forbidden.