Lyme Disease Support Group

does anyone experience tingling sensations running up the sides and back of your head? And jerking or twithcing of your head/neck muscles like someone is trying to turn your head?

ORNURSE~

I experience the tingling sensations on side of face, and also dull pain or achiness on sides of head. I have been diagnosed with Chronic Neuro Lyme for which I am praying to be healed of -- hopefully get to go back on IVs. Is the twitching and jerking seizures?

ORNurse I have had the tinglening sensations. I used to feel like someone was pouring soda on the inside of my head, in the back of my head. Did you ever experience that?

I'm interested to see what anying else has to say about this.

Hi ORNURSE and Smile,

Yes, I have felt all of the symptoms you both described. My head is numb and tingling all the time. Sometimes it feels like something crawling or water slowly running down head as you described.

I have bad headaches, lots of stiffness in back of head and neck. Also, twitching of eyes so bad at times that I can't hardly see. Then there is the twitching in my face.

My face feels numb and tingly most of the time. At times, my brain feels like it is being shocked. These are very scary and disorient me so bad that I don't know where I am when it stops.

The numbness and tingling also happens in arms, hands, legs, feet, and body. The jerking was so bad in Jan. that I thought someone was pulling me out of my bed by my legs one night.

I have since been put on Mirapex, Neurontin, Flexeril, Zanaflex to help with this problem. I take Mirapex and Neurontin three times a day. The other two I take before I go to bed.

This has helped with the jerking, but it still happens a lot.

Good luck!!!

Sheila

I have the exact same symptoms you described.

Does anyone get the burning in the joints of there neck that spreds all the way up the back of your head?

My head will feel like chills running up the sides of it. They come and go.It seems like if I eat anything sugary I will get them. They have gotten less with the antibx therapy but I still get them.

I think I got lyme shortly after I had a steroid injection in my neck. The last injection they gave me was a different kind of steroid and it really screwed me up. That is the last one I will ever have.

I believe I may have thoracic outlet syndrome as my left arm is a mess. When I use my left arm I get that tingling sensation up my head, left ear will ring as if I have a nerve that is irritated. And ear pain and now a sore throat only on the left side. Weird.

I know that when they gave me that last steroid injection they said there was a very low risk that I could be paralyzed in that arm. Well it is not paralyzed but is very messed up. Everytime I use it even just to wash my hair it kills and the ringing in my ear and whole cycle starts. The doctors are baffled.

I've had such bad head and neck pain and it felt like my brain was swelling, to the point where I couldn't talk because moving my jaw made it feel SO much worse..I havent had one of those head aches for a while, knock on wood!! But yes, I have gotten those tingling feelings, the only thing that works for me is sleeping it off..but it has put me in the ER a few times, its horrible

ORNURSE, You should talk to Jaime. She had a bad experience with steriod injections. She might be able to gave you an idea about whats going on. I also started to get neuro problems after taking oral steriods for neck pain.