Tourette Syndrome & Tic Disorders Support Group
This community is dedicated to those afflicted with a tic disorder. A tic disorder is one in which uncontrollable muscle spasms that can range from small annoyances to major disruptive occurrences. .
So, I have had what I thought were frequent cold chills (in the summer too) my entire life and really didn't think much about it. Along with other stuff. Well, it wasn't until recently that finally what ever's going on finally caused me to seek medical attention.
Lately, the "cold chills" became frequent neck jerks and arm waving. At first it only happened when I was at home and winding down for the evening. I can feel them coming on but can't stop them. They just do it. My neck and my arms jerk for a short period of time. They got worse and worse. Well I went to my pcp and she thought they were hypnic jerks. The only problem is they happen while I'm wide awake. So, I scheduled a sleep study. However, I started getting the urge to do them at work but focusing really hard kept them from happening and doing other stuff like shaking my leg.
They started increasing. Someone was with me when I had them really bad last Wednesday and made me go to the ER were I was diagnosed with involuntary movement and sent home. The next day I was I was driving and had a near miss with another car and I started jerking my neck and arms non stop. I tried calling someone to talk to them to see if that would help but it did not. It was so bad that I had to pull over and my friend came to my car, looked at me jerking non stop and called the ambulance because he thought they were seizures but I was awake but I was repeating myself and stuttering which I never do. They carted me to the emergency room where the jerks happened non stop until they slowly started to settle down on their own. I had a head CT that was normal except for some calcification that was probably there since birth. So, the doc in the ER said it was an acute stress reaction. So I'm at a loss. The Xanex calmed them down for the most part but they are ramping up again. So, basically I'm at a loss. I'm going to schedule and appointment with a neurologist but I am so frustrated because I have no clue what's going on and feel like I'm not being listened too.
Lately, the "cold chills" became frequent neck jerks and arm waving. At first it only happened when I was at home and winding down for the evening. I can feel them coming on but can't stop them. They just do it. My neck and my arms jerk for a short period of time. They got worse and worse. Well I went to my pcp and she thought they were hypnic jerks. The only problem is they happen while I'm wide awake. So, I scheduled a sleep study. However, I started getting the urge to do them at work but focusing really hard kept them from happening and doing other stuff like shaking my leg.
They started increasing. Someone was with me when I had them really bad last Wednesday and made me go to the ER were I was diagnosed with involuntary movement and sent home. The next day I was I was driving and had a near miss with another car and I started jerking my neck and arms non stop. I tried calling someone to talk to them to see if that would help but it did not. It was so bad that I had to pull over and my friend came to my car, looked at me jerking non stop and called the ambulance because he thought they were seizures but I was awake but I was repeating myself and stuttering which I never do. They carted me to the emergency room where the jerks happened non stop until they slowly started to settle down on their own. I had a head CT that was normal except for some calcification that was probably there since birth. So, the doc in the ER said it was an acute stress reaction. So I'm at a loss. The Xanex calmed them down for the most part but they are ramping up again. So, basically I'm at a loss. I'm going to schedule and appointment with a neurologist but I am so frustrated because I have no clue what's going on and feel like I'm not being listened too.
When I started going to school I had random urges to hit the person next to me and one time i did! It was soo embarrassing. I hope we can both find help for our symptoms and can possibky come to terms with what we have :)
I am so glad you're safe from that near miss on the road! How scary!
I have found that those who have TS or related dx definitely need someone who they can talk to and just have listen. I noticed with my son when he first got diagnosed he was embarrassed to talk to anyone about it, even me. As time went on he began telling me about them and how frustrating they are to him, and how much he hates it... As much as it breaks my heart I have seen his tics slightly decrease, even during waxing periods, since he's been able to talk about it.
Do you have a very close friend or family member who you can talk to on a regular basis about this? I think a neurologist is exactly who you need to see for the symptoms you have been describing and I hope they figure it out soon for you!
You're in my prayers!