I am not new to Chiari's, but I am new here... so forgive me if this has been answered before.
I am having "painless" muscle twitching, sort of like what you feel when you first fall asleep or jerk awake as if falling in your sleep... My foot will move on it's own, my abdomen will contract, arm move all by itself - etc. Often it will wake me if I am not asleep deeply. It's not painful really, but when your muscles are twitching or having little spasms, it's odd and sort of embarrassing. I find it hard to relax because my body is always moving if I am at rest. My Neuro diagnosed it as "restless leg syndrome" but I don't have a "need" to move - I just MOVE!
Is this Chiari related, or something new and fun? Not wanting to chalk everything in life up to Chiari, but not really hoping it is another issue to deal with. He's put me on Mirapex for the RLS. So far no change... I appreciate any insight you have!
I have the same twitches/spasms. Random and some days worse then others. Even my lip or under my eyes. Its a trip. I can even hear my heart beat or swoosh around at times. Super nutso. I also stutter a bunch at times so when I am twitching and stuttering, I’m sure I’m a sight to behold. I think based off what you are saying that it may be Chiari related. I have those symptoms too and from what I hear RLS can be pretty painful. We Chiari patients no what real pain is so its easier for us to brush pain off and call it discomfort. That would be my advise to you. Pay attention to what it really is and go from there.
I have noticed I have spells when it is hard to swallow and sorta get stuck. I have to stop talking even because i have to catch my breath and get past it first. I "loose" my words and can't get things out sometimes... I know it sounds like "faking" but on the inside of me, there is nothing fake about it. I've been feeling like I am going nuts!
I so appreciate your reply! Even if it's yucky, it's nice to know I'm not nuts :-)
I think it's Chiari related. Sometimes my muscles will twitch and I'll throw my arm or leg. It happens when I'm falling asleep. It is weird. Tonight when I was holding my dog, my right arm began twitching at the elbow and upper arm. I was watching it and thinking - this is weird. I also have my foot moving, my abdomen contracting and arm movements. Sometimes I get the loud noises when I lay down like tinnitus. I wish there was more research for Chiari. NL and NS's can't agree and there is information all over the place. Unless you live near major areas that specialize in Chiari, it's hard to get dr's to listen and/or understand. I wish I had the type of insurance to go to Denver or The Chiari Institute.
I'm not sure if the meds will help, but good luck. Let us know what happens.
I haven't read the other replies here, yet, but I know the answer to this one. It is called PLMD - Periodic Limb Movement Disorder. It is a disorder related to RLS, but it is not the same. You have described it perfectly. I also have PLMD. Unfortunately, I cannot say for sure if it is related to CM, but I am thinking it could be. I know sleep disorders like sleep apena (which I also have) are symptoms of CMI. You can google Periodic Limb Movement Disorder and find a wealth of information. I take Ambien nightly to help me sleep more deeply which helps to control mine. Good Luck!!
Thanks so much for the replies! I am going to look into the PLMD. It's odd, because I have looked at the symptom list everywhere and none seem to say something about this. But RLS just does not fit. I already take Ambien due to medicine interactions and insomnia (of course, due to pain and the movements). Nice to hear the same story for several people... I am not crazy! (at least where this is concerned!) LOL
My right leg/foot twitches. I am 3 weeks post surgery and it seems a little worse then before surgery, but I am hoping they will ease up or go away once all the swelling has subsided and I'm back to normal!
I have involuntary muscle twitches/spasms too. It happens most often in my arms, legs, and feet. But, a couple days ago, it happened to my face. I was sitting outside and all of a sudden my sunglasses started to almost bounce on my face! The left side of my face was twitching enough to move my sunglasses several time in about a 30 second period of time. No one else was around to see it, so I have no idea what it looked like. It kinda freaked me out though! I will definitely be asking my NS about this.
I have it too. It drives my son crazy. I sit with him to do his homework then all of a sudden my leg will jump or my arm will too. Every time it happens it startles him and he asks if I'm okay. I tell him I just short circuited and try and laugh it off. It's a newer symptom for me and it's annoying. As far as swallowing lots of people with Chiari have gagging, swallowing or lump in throat issues. When my pain is intense my gag reflex makes brushing my teeth without throwing up very difficult. It also bothers me during dental work.
I have this to seems only in my right bicep and both of my legs. It is weird because I can just be relaxing and sitting there and all of a sudden it starts. One time my daughter was just using my legs as a pillow when we were watching tv in the bedroom and my legs started in. She asked if it hurt and was laughing because it felt weird to her. It is embarrassing when it happens when you have guests and it starts in. I've always had a hard time finding my words per-say, i have a tendency to stutter i guess you can say, it's been really hard being a college student and having to give presentations and worry about that.
This info is extremely helpful. I have an appointment with my Neuro soon, and I am going to bring this info. Why is it that so often the docs seem to not know the info as clearly as it seems they should? I know they are human and can't know the ins and outs of every disease known to man, but I feel like I am arming HIM with info each visit... Seems backwards. Ugh.
Hi, I have muscle twitches also. Mostly on the left side of my body and have recenlty added the abdomen twitching that almost felt like braxton hicks but only on the left side of my abdomen, very strange. I was diagnosed with seizures in November after I lost hearing (very muffled) in both ears, got extremely nauseated, felt like a sack of potatoes and dropped to the floor and puked. My husband called 911 and I was in the hospital for five days. I had seizure testing but they did not find any activity but felt that my symptoms from that episode and from instances of twitching and dizziness etc. along with other symptoms were enough to warrant a diagnosis of seizures :( I totally understand your frustration and reluctance to just chalk everything up to Chiari but the more that I learn the more I realize that my myriad of symptoms probably are ALL related to it and in a way, I hope they are because I don't want to even think about another illness on top of it :( I hope you are doing well and taking one day at a time and your NL appoinment goes well and leaves you feeling supported and ready to fight a new day :)
I have muscle spasms quite frequently. Although they do not effect my sleep. I have Chiari but I also have a syrinx so this may explain the following. I looked up PLMD and it doesn's seem like it is what I am experiencing. I did find this though. Hope it helps.
Peripheral Neuropathy
According to the Mayo Clinic website, peripheral neuropathy is characterized by damage to a nerve that runs from the spinal cord to a muscle. It can be caused by trauma, infections, metabolic problems and toxin exposure. Diabetes-related peripheral neuropathy is one of the most common causes of this neuromuscular disorder. The NINDS says common peripheral neuropathy symptoms include the following: muscle weakness; painful muscle cramps and fasciculations or uncontrolled muscle twitching that's visible under the skin; muscle wasting; bone degeneration; and skin, hair and nail changes. According to the Mayo Clinic, people with peripheral neuropathy often describe it as burning or tingling pain, and that the loss of feeling or sensation occurs in a stocking- or glove-like distribution pattern.
So timely...this issue literally just started for me yesterday. I had heard of RLS but honestly just couldn't wrap my head around it because I couldn't comprehend it. I have a very similar feeling, no pain whatsoever, just involuntary muscle twitches. So far it's only in my legs/feet and for me it didn't happen near bedtime, it happened during the daytime. I am also take Ambien, was only prescribed it beginning in February. I will look into the PLMD, thank you April for mentioning it.
Christisue, I also am not new to Chiari but my symptoms are starting to ramp up quickly as of late 2011/early 2012, so I am considering keeping a journal of new/escalating issues. Does anyone do anything like this to give to their doctors, and if so, do your doctors actually listen to you describe the new symptoms?
