Neurological changes after VM

[Seacalm]

I just wandered if anyone else has experienced the following neurological symptoms. I am 10 months post VM and had these symptoms initially however these are now progessively becoming more dominant as the severe headaches and nausea has subsided.

I have a very strange sensation at the back of tongue that creates pins and needles alongside pressure at the base of my spine that creates pins and needles in both legs and feet!! It seems like the top and bottom of my spine are buzzing with nerve sensations all day but nothing in the middle of my back. I do have nausea and headaches but not as severe, I am very photophobic and photophobic although some days are better than others. Movement such tv, children playing, driving, travelling as a passenger all make it worse.

If anyone has a similar story it would be good to know as i am due to go back to the neurologist to rethink what to do next.

[purplecircle77]

I am 20 years post VM... and although the recovery is long... Please be patient with yourself... I had headaches for a couple years... The second year they were few and farther between. As I'm sure you have learned when you brain and spinal cord are being squeezed from end to end there are many things that could happen. It sounds to me like you may have triggered some kind of fibromyalgia response. I feel it in my lower spine ( the first 5 or 6 vertebrates above the tailbone... It's like an electrical charge that you cannot stretch out to relieve.. It's not painful per say but can drive you mad if it doesn't let up... it did not start until years after my VM in 1998. I honestly never thought to correlate the two. I have found a way to relive it though... It's the hardest thing to do but just put on some shoes and start walking... Speed does not matter just stand up straight hold you posture as firm as you can without stressing your body and it will subside.. if I walk 40 minutes to an hour two or three times a week... I can keep it at bay.. good luck. Feel better... And congrats.. You are a survivor... You got this!

If anyone disagrees... Or wants to add something I'm always willing to learn.

[Christinedion in reply to purplecircle77]

How long did it take for you to recover?

[purplecircle77 in reply to Christinedion]

I was sick with terrible headache for about a month before I was diagnosed... Fever went up to 104.7 before the gave me a spinal tap. I had headaches worthy of pain killers for about four months after that... And struggle with lack of energy to this day. But for twenty years every time I get a headache I fear relapse. I had two little kids and am abusive husband(at the time) who didn't believe me after about two months so I pushed on and survived... The best I've ever felt since VM is when I was going to the gym regularly... Strength leads to endurance... Start slow and don't stop!

[Christinedion in reply to purplecircle77]

Thank you so much! Energy is such a hard hard thing.