Twitches, Tic, And Tourette's Like Symptoms

General
1

Hi everyone. Hope you all had a great weekend.

I would like to hopefully get some feedback from as many of you as possible.

In June of 2009, at the age of 34, I was diagnosed with Tourette's Syndrome. I didn't have my first tic until August of 2006. I saw a number of doctors in that time frame. Most of them had no idea what was going on with me, because, technically, you develop Tourette's in adolescence. I was told by a neurologist at the Mayo Clinic that I couldn't possibly have Tourette's.

I was initially diagnosed with Tardive Dyskinesia. But, after watching videos of other folks with TD, I realized that my tics were much different. Finally, a neurologist affiliated with Barrow Neurological Institute diagnosed me with Tourette's. To see a video of the types of tics I had back then, click here.

In the two plus years since, I've had every type of "tic" imaginable. I would smack myself on the back of the head. I would spontaneously speak in an accent. Even my migraines have been called a "tic".

Today, regardless of whether I'm on medication or not, the only tics that I seem to have are blinking, eye twitches, and face scrunches. I do them constantly. Probably over a thousand times per day.

I would like to know if anyone else has exhibited the same type of symptom. I am currently on Social Security Disability because of my "Tourette's", but the more I think about it, I think it might somehow be related to the Chiari.

In the last 31 months, I have been diagnosed with Tourette's Syndrome, PTSD, low testosterone, carpal tunnel syndrome, a Chiari malformation, and a pineal gland cyst. Either I'm the unluckiest guy in Arizona, or all of these things are somehow connected.

2

Twitch,

My husband always says if I didn't have bad luck, I'd have no luck at all!" LOL! That is how I feel sometimes! It seems like alot of Chiarians have multiple health issues. I have Celiac disease, Sjogren's Syndrome and Cicatricial Pemphigoid and Scleroderma (all auto-immune issues) . It sounds so overwhelming! I couldn't imagine that the Tourett's isn't somehow related to Chiari. Even though you have gotten some of it under control, it still seems like alot to have to deal with all day, every day! Have any of your doctor's seen this before? I'm very curious to hear from other Chiarians out there who may have the same experience as you.

Hang in there!

Monique

3

I have a twitches in my arms and legs. The doctors all try to tell me it's restless leg - gave me a script for Zanaflex which I don't take. I asked if I have Restless arm too.. they told me it's basically the same thing. my left wrist and hand seems to get it more...

I just chalk everything up to having "crappy luck". It's not like the doctors have ever came to me and said... Everything is great, perfect bill of health... when until up until my early 30's it was pretty normal. Plus all of a sudden I have a horrible intolerance to heat. It's like my body cannot regulate it's own cooling anymore... and I'm only 40

I think Chiari has more to do with a lot of things!

4

Hey Twitch,

I have a significant amount of eye twitching as well. Typically mine is very mild and isn't overly noticable. My neuro said that I could to botox to potentially stop it but it's just not worth it for me. I'd rather suffer thru it than to have huge needles poked into my face around my eyes.

I do have other tics or twitches. You know when you get chills down your spine? Crank up the volume on that to the point where it makes you verbalize something (usually not child friendly). My neuro has given no definition but he is aware of it. Its usually only once or twice a week, so its a miniscual amount. So I just let it be.

I also have restless leg (more like restless whole body) and am on mirapex equivilent to what they would give a parkinson's patient. When it's at it's worst its like my entire body is plugged into a broken electrical outlet and there is this bizarre sporadic current running through me. We do know that I have suffered significant nerve damage on my upper and lower extremeties and they have diagnosed that as Gloves and Stocking syndrome. But there isn't much we can do about it. :(

Personally speaking, I think it's very realistic to believe that anytime you get neuro parts out place and/or alter the flow of CSF and not have repercussions from that. I think that they haven't completely identified or thoroughly publicized all the additional problems this can cause. Just my humble uneducated opinion.

5

I asked my daughter who is not good explaining how long something last. To her after being up two hours she thinks the day is almost over. She said at night her eye twitches, asked her alot she said i do not know sometimes and once in a blue moon. She also said her body twitches alot during the day. I have seen her body twitch,she just be laying there and it will start twitching. She feels lighting bolt pain her back that goes "bah bah bah". It does not go down the legs or the arms. Hope you are feeling better today.

Susan

6

That is what I'm starting to think also. That some of it has to do with nerve damage. I tell people all the time with my daughter her day is based on what nerve is being effected that day. I so agree you would think there would be more interest in Chiari from the medical community. I never heard of Chiari untill my daughter was diagnosed with it. Now I have educate everybody at work about it,who educate there friends. People will call me and say I just saw something on tv about Chiari, I told everybody watching with me about your daughter.

Susan

7

I also get the full body electrical shocks . Mostly when someone hugs me real hard or I am in the shower or wash my hair. I have even dropped to my knees because of the shock severity. I think everything we have has to be CM related the pressure on our cranial nerves & spinal cord is damning. Your Cranial Nerves control all your bodily functions. There are even cases of spontaneous death for people that has CM and didn't know it. The pressure on the Cranial Nerve that controls you heart beat had to much pressure on it and the guy just fell over dead. I saw that on "Stories from the ER". I also befor my CM decompression surgery had Microvascular Decompression Surgery on Cranial Nerves 4,5 &7. They first dx me with bi laterl geniculate neuralgia. It was like ice picks sticking in my ears for four years before I got a correct dx and treatment. I also have hypothyroidism and dysphagia & chronic pain & headaches & arm twitches when my muscles are fatigued.


Twitch said:

I get thoon os the se type of twitches as well, Susan. Feels like I stuck a fork in an electrical outlet. The "electricity" feeling shoots from my spinal cord, down through my legs.

I'm guessing that has to be connected to some type of nerve damage. Having an unresolved Chiari for a number of years has to effect the nerve fibers in your spinal cord. I can only imagine, having the extra pressure of part of your brain pinched up against your cord for years. It has to do some kind of damage to the cord eventually.

You would think for as much damage as Chiari does to your body, there would be more interest within the medical community to find out more about it.


Susan said:

I asked my daughter who is not good explaining how long something last. To her after being up two hours she thinks the day is almost over. She said at night her eye twitches, asked her alot she said i do not know sometimes and once in a blue moon. She also said her body twitches alot during the day. I have seen her body twitch,she just be laying there and it will start twitching. She feels lighting bolt pain her back that goes "bah bah bah". It does not go down the legs or the arms. Hope you are feeling better today.

Susan

8

I've just started to notice the amount of tics I think I have. No one has officially told me any of the things I'm doing are tics for sure, but putting all this together and reading everyone's experiences...I'm not sure what else they could be considered. I get the electrical like feeling but in my R shoulder blade then down my R arm and into my pinky & ring fingers. It's not daily, but when it's bad, it happens often. I also get a shudder of sorts that happens quite frequently throughout the day. It's almost a buildup of something and if I don't twitch it won't stop. I have been dx with RLS, but I'm not taking anything for it. The one I find most annoying happens in my face. I wear glasses, so at first I thought it was that, like they were too heavy for my nose or something (sounds ridiculous, I know lol). My R eye and cheek do a lot of squinting and twitching. As you can see all of my issues occur on the R side. I'm waiting on a 2nd opinion appt, but it has been determined I have disc damage from C-1 to C-6, bulges, disc degeneration and my C-spine is shaped like a backwards 'S' plus the herniation. There has got to be some correlation to all of this.

9

Cholmee,

I had my cervical spine rebuilt when I had my CM Decompression surgery. The CSF pressure was literally pushing my verterbrae out of my spinal cord. I always have herniated discs. I am sorry you are having such a challenging time .

10

Thanks Tracy, I've only just learned of all this C-spine stuff in the last month so I'm not sure what to do about it yet. I haven't been told there is any CSF pressure, so I'm considering myself lucky. I do go for a 2nd opinion appt with a new NS on Tuesday. I am really hoping to walk out with more answers than in the past.

Kellie