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Not so new symptom /information please?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Not so new symptom /information please?

Postby Mechanicallyinclined » Fri Jan 01, 2010 11:23 pm

I never noticed this before. Waite, I should say I never paid attention to this before. I've noticed that when I go to sleep, I occasionally get woken up by a sudden spasm (if that's the best way to describe it) in my left upper arm . Kind of a sudden jerk. This never happens when I am upright, sitting or standing, only when I go to sleep. Just the kind of thing that is so sudden it just wakes you up. I never paid much attention to it before because I thought it was just a nerve twich.
From anyone that has a somewhat knowlegable opinion could this be because of a difference in the blood flow when I'm horizontal as apposed to upright? I'll have to pay more attention to this ,but my left side and leg is where I have more of my spasticity or tightness. I'm just wondering if this could be related. This spasm I occasionally get I think only happens to the left upper arm and / or side and only when I go to sleep. This never happens during the day.
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Postby Johnson » Fri Jan 01, 2010 11:48 pm

It is perplexing, Mech. There are complexities of seratonin and dopamine that could be involved, though it is odd that it seems localized to your upper left arm. That sounds more MS/CCSVI-like (in my un-learned opinion). Do you tend to go to sleep in the same position? What happens if you change that habit?

Are you prescribed any SSRIs? (Prozac, etc.) I have a close acquaintance who is on some form of anti-depressant, and when she is falling asleep, she gets whole-body spasms that wake up her husband. I suggested a little of God's own dopamine before bed, and she reported that it helps somewhat.

If we can get liberated, those will be amusing, academic questions. Imagine, no more wondering what is MS, or not. I'm just a bit afraid to find out that I am a curmudgeon because I am a curmudgeon, and not because of MS. Grin.
My name is not really Johnson. MSed up since 1993
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Postby Camilla » Sat Jan 02, 2010 5:05 am

It sounds like something I get! Sudden jerk, only when sleeping. Often my 'weak' left arm!

Has been described by my neuro as a syndrome called "periodic limb movement of sleep". Not sure if that is the whole story. Almost never get when awake/upright!

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Re: Not so new symptom /information please?

Postby euphoniaa » Sat Jan 02, 2010 6:41 am

Mechanicallyinclined wrote:I never noticed this before. Waite, I should say I never paid attention to this before. I've noticed that when I go to sleep, I occasionally get woken up by a sudden spasm (if that's the best way to describe it) in my left upper arm . Kind of a sudden jerk. This never happens when I am upright, sitting or standing, only when I go to sleep. Just the kind of thing that is so sudden it just wakes you up. I never paid much attention to it before because I thought it was just a nerve twich.


I've done research about this before - it's likely that it's a hypnic or hypnagogic jerk, common in the entire population and not exclusive to MS at all. Wikipedia has a short explanation, but you can find plenty more info elsewhere on the web. The single limb version is similar to the familiar sensation of "falling" asleep, which is where that phrase comes from in the first place. "Periodic limb movement" is explained as well:
http://en.wikipedia.org/wiki/Hypnic_jerk

Hypnic jerk
From Wikipedia, the free encyclopedia
This article is about the involuntary movement when sleeping.

A hypnic or hypnagogic jerk is an involuntary myoclonic twitch which occurs during hypnagogia, just as the subject is beginning to fall asleep. Physically, hypnic jerks resemble the "jump" made when a person is startled.

Often accompanied by a falling sensation, it is commonly caused by irregular sleep schedules.

Origins
The neurological reason for hypnic jerks is not fully understood, although the two dominant theories suggest that as a subject's heartbeat and breathing slow down, hypnic jerks occur as a natural part of muscular transition; or that as a subject falls asleep, their muscles begin to relax and cease working, causing the brain to believe that the body must be falling through air. It is thought that this causes people to thrash their limbs in an attempt to catch something or turn oneself upright.

Occurrence
Hypnic jerks are usually felt once or twice per night. More regular, and usually less intense, hypnic jerks often occur during normal sleep. In extreme cases, however, this is classified as a disorder called periodic limb movement. People with the disorder usually sleep through these events.


I discovered it when I started a daily symptom chart about 5 years ago during my LDN Experiment. I named this column "One Jolt Clonus" since it seemed sort of Myoclonus-y, but only happened once or twice a night, usually to my left arm. Right before I dozed off, my arm (or occasionally another body part) would jerk straight out. Once. A couple of times my head jerked back and felt like it was going to pop off instead.

I rarely put a checkmark in the column these days since it never changed or seemed to progress, and I found out it was just as common in the "normal" population. And it's not dangerous, except for the bruises I got when my hand hit my nightstand a couple of times. :)

Full blown, regular Myoclonus, on the other hand, is one of the more serious of neurological problems, so I'll post a link to info about that, too.

http://www.ninds.nih.gov/disorders/myoc ... clonus.htm

It would be great if every single weird symptom in our lives was entirely due to MS, and then they identify CCSVI in everyone with MS, and then they decide MS is entirely due to CCSVI, and then they come up with a single, quick, simple procedure to fix it, and then all the doctors are trained to do it, and we're instantly cured and free from it all... :D But this one is likely a universal trait in all of mankind instead.

My mantra, "It's not always MS...it's not always MS...it's not always MS..." :D
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Mechanicallyinclined » Sat Jan 02, 2010 10:15 am

I couldn't fall asleep last night as I wanted to pay attention if it hit me again. What I noticed this happend after I fell asleep. It was like a twich which actually effected my left side of the neck and upper arm or shoulder. It's almost hillarious becuase the moment it happened, It woke me up and I started thinking " Okay what exaclty happened here". lol
It's not as if I'm in the process of falling asleep and I suddenly awake with a jolt. This is when I'm sleeping. I don't honestly know how long ago this started. I never really analized it until now.
Yes this may not even be an MS thing. Some of your explanations make sense.
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Postby astro » Sat Jan 02, 2010 11:01 am

I regularly get the "one-jolt" clonus in my legs, also only when I am laying down in bed. When I'm awake and laying/sitting in a recliner with my legs up, I can actually watch one or both legs slowly contract, almost like a jolt in slow motion. This slow motion twitch begins as a mild urge to move my leg, growing in intensity until my leg contracts, and occurs at a rate of about once every two minutes.

I've been on Baclofen (10 mg 2x per day) for two months but it has not helped.
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Postby euphoniaa » Sat Jan 02, 2010 12:50 pm

astro wrote: When I'm awake and laying/sitting in a recliner with my legs up, I can actually watch one or both legs slowly contract, almost like a jolt in slow motion. This slow motion twitch begins as a mild urge to move my leg, growing in intensity until my leg contracts, and occurs at a rate of about once every two minutes.


Hi astro,

The "slow motion twitch" is almost certainly Restless Leg Syndrome (RLS), yet another weird non-MS phenomenon that comes up regularly in the General Forum. You gave a perfect description of it, and one of the giveaways is the way the spasms are so regular. I would count the seconds between the spasms to lull myself to sleep, generally about 15 - 30 counts, and each spasm is separated by the same number of seconds.

I've posted on it many times over the years and there's plenty of info online. I seldom get it any more, now that I discovered my food triggers - with me it's certain junk food from the snack machine. I keep daily symptom charts and lists of what I eat, so now I only get an occasional mild twinge. It's also caused by certain meds.

When mine were bad, it felt like the nerves deep inside my legs were trying to claw their way out to escape from the surface, and then my skin & muscles slowly squeeeeezed them back into place. Over & over & over...then the spasm would often end with 5 kicks. I basically don't get it any more since I gave up the snacks - I'm pleased that I figured out how to control it without meds. My body hates meds.

Although I assume my 2 nerve conditions (MS & HNPP) could easily contribute to my plethora of tingly, twitchy, spasmy symptoms :) , they are not the direct cause of them all, although HNPP is always a more likely culprit (see below).

(...it's not always MS...it's not always MS...it's not always MS...) :)

Good health to all.

P.S. At the RLS foundation site, they say:
A substantial number of people who have RLS also have periodic limb movements of sleep (PLMS). These are jerks that occur every 20 to 30 seconds on and off throughout the night.


13. Is there a known cause for RLS?

Extensive research into the cause of RLS is occurring worldwide. A single unifying cause has not been identified, but we are getting closer. Here is what we do know:

RLS often runs in families. This is called primary or familial RLS.

Researchers are currently looking for the gene or genes that cause RLS.

RLS sometimes appears to be a result of another condition, which, when present, worsens the underlying RLS. This is called secondary RLS.

Up to 25% of women develop RLS during pregnancy but symptoms often disappear after giving birth.

Anemia and low iron levels frequently contribute to a worsening of RLS.

RLS is very common in patients requiring dialysis for end-stage renal disease.

Damage to the nerves of the hands or feet (i.e., peripheral neuropathy) from any number of causes including diabetes contributes to RLS.

Attention Deficit Disorder (ADD) is common in children and adults with RLS.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby happy_canuck » Sat Jan 02, 2010 2:52 pm

Count me in as having:
- whole body twitch (more like an earthquake!) just as I'm falling asleep, maybe once a month or so
- nightime twitches according to hubbie that don't wake me up
- daily spasms, mostly in quad muscles in both legs, appearing in clusters every 30 secs or so for hours at a time

I have a prescription for Baclofen, but have never tried it. I used to use Gabapentin to control them, but I am trying to stay away from drugs that relieve symtpoms and manage my symptoms in other ways. Acupuncture helps, as does exercise when I am able.

I had very low iron levels, which may explain some of the twitching/spasms, but funnily enough when my iron got so bad I could not move at all a couple months ago, I had no spasms at all for about a month. When my anemia was gone, the spasms returned. Same thing happened after my father passed away in 2008 -- no spasms for over a month. I wondered if the spasms required energy and when my body was so depleted it had no energy to spare the spasms simply didn't happen.

I think this may have something to do with circulation because if I move my leg voluntarily by shifting sitting position, standing, or walking, the impending spasm does not happen. But it may not have anything to do with MS...

Cheers,

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby euphoniaa » Sat Jan 02, 2010 7:25 pm

I know that many spasms that MS patients get (like full Myoclonus ones) can be serious and detrimental to one's health, mobility, and enjoyment of life, but in my case, I've never, ever considered making an attempt to control the pesky things with medication. :) Even the RLS, which sounds pretty creepy in print, only happened occasionally - even at its worst, disappeared in a short time, and gave me no pain. All I had to do was get up and walk around for a little while.

I seldom notice the nightly jerks, they don't indicate anything abnormal anyway, and I've become used to the "popcorn twitches" that have covered my left leg 24/7 for the last 6-7 yrs. Even the peripheral neuropathy causes mainly numbness, which goes away sooner or later anyway.

Every single one of them is only occasionally irritating and not disabling. On the other hand, most of the meds that would be used to treat them scare the holy crap out of me and could potentially give me side effects worse than the original problem. :D

My healthy diet & exercise seem to have been as effective as any of the meds I hear about.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Not so new symptom /information please?

Postby thornyrose76 » Sat Jan 02, 2010 7:36 pm

Mechanicallyinclined wrote:I never noticed this before. Waite, I should say I never paid attention to this before. I've noticed that when I go to sleep, I occasionally get woken up by a sudden spasm (if that's the best way to describe it) in my left upper arm . Kind of a sudden jerk. This never happens when I am upright, sitting or standing, only when I go to sleep. Just the kind of thing that is so sudden it just wakes you up. I never paid much attention to it before because I thought it was just a nerve twich.
From anyone that has a somewhat knowlegable opinion could this be because of a difference in the blood flow when I'm horizontal as apposed to upright? I'll have to pay more attention to this ,but my left side and leg is where I have more of my spasticity or tightness. I'm just wondering if this could be related. This spasm I occasionally get I think only happens to the left upper arm and / or side and only when I go to sleep. This never happens during the day.


I have had that problem for years, except in my legs. My previous MS neuro explained it as nerve(s) misfiring which cause the limb to jerk. She prescribed me Baclofen, a muscle relaxer . I take it at night, because it helps with the stiffness, but the jerking is not so bad after taking it. This might be what it is but ask your MS neuro. :)
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