NO answers!!!! Anyone have any ideas?
 

Feel so lost


I started having severe headaches that were ongoing 24/7 (without break) from November to December (possibly early Jan) last year. The pain was intense pressure and along with it throbbing, dizziness, couldn't tolerate moving (crawled at one point), near blackouts, couldn't think, couldn't even use my hands, a "liquid" feeling in my head and endless stroke like symtpoms and scary things. Suddenly it abruptly stopped.
My doctor referred me to get a ct scan.

Suddenly two weeks ago I got it again suddenly. It burns, aches, throbs and goes all over my head. It's much worse than before. The burning is so intense and goes down to my neck. Along with it random twitching or shaking of my body, can't sleep, can't think, sleep no more than about 3 hours, Feel "out of my mind" (like my brain detaches from my head?) feel random loss of feeling, feel mentally impaired (severely), trouble finding words, speaking like a kid at times, feel inner ear pressure, sometimes I get tinnitus, feel like "wires are crossing in my head" and that joyous feeling of liquid around my head.
It's scary because I can stand and go to the cross the road and not have any care or understanding of risks. I feel in a constant fog of pain and like I'm detached from the world. I do suffer depression and have had it most of my life, but this is entirely different. I feel my personality has changed. I feel like a different person. I have near blackouts and like wires are crossing in myhead which is frightening to experience.

I had a spinal tap today and results were good. It caused me to have burning rushes up my neck and into my body, twitching (more), tingling, worse headaches, a really intense out of body feeling like I was floating above my body which was scary. The tap was excruciatingly painful and caused scary nerve problems

I had the ct scan yesterday of my head and results are good. No pain killer helps.
What could this be? Are my nerves shot? Is it my neck?

I feel lost :(

The spinal tap results say that I had 16cm on opening pressure and it was clear. Know nothing else. He told me about one red blood cell but I'm not sure what that means.

I just did a quick search. Has anyone suggested occipital neuralgia?
There is a section here on NT on this.

Apparently it is often accompanied by derealization (surroundings appear "unreal,") and depersonalization (ditto for "self"). Seems to be located in the occipital/temporal region of the brain.

Lots on the web....at least you will see you're not alone with these symptoms, and at best you will find a physician to recognize and treat this. You might want to consider shopping for a new doctor, for I'm surprised this was not considered.

Best of luck...it sounds very scary, but treatable.

---Sylvie

PS....sorry, I didn't realize I was on the occipital neuralgia site (thought I was in "peripheral neuropathy!." Yet, what I said about focusing on the occipital/temporal region apparently holds. Treatment can include anti-convulsant drugs. I read one site that likens your symptoms to a form of epilepsy. Again, I wish you the best.

S

Occipital neuralgia to the greater occipital nerve can cause peripheral nerve sensitivities to the upper left rear of head....and more. I would highly recommend finding a neurologist who has experience with occipital induced headaches. If you find one that actually performs the compression release surgical procedure...even better.