Sunday, April 14, 2013

What's with my neck? A request for help

A new symptom has surfaced. When I'm "off", my neck seems to have a really hard time holding my head up.  I find myself looking only at the ground.   It becomes quite painful, though Gabapentin (Neurontin) seems to help.  When I sit at the computer,  I have to support my head on my hands/elbows to alleviate the pain.  The doctor says it's from working at the computer too much, but then why does it seem to get better when I'm "on"?

Anyone out there have this symptom?


Blue House Studio World HQ said...

It's been a while since I visited. A lot has changed since I was last here (early 2012 I think). My mom had this same symptom (neck droop) and her neuro would not commit to it being PD related. She has stenosis, arthritis and other issues with her back (she has a medtronic device implanted there) and there was a lot of confusion regarding the neck droop. It is better now, just seeming to improve on its own, or maybe via meds by accident. Until recently, her PD has been less of an issue than her other problem, but that is changing.

Have you had any relief from this symptom since it started?

I have just read backwards through your blog for the past year. I am 6 years from onset and about to graduate from agonists alone to the hard stuff (dopamine) which I have been resisting.

Has the DBS helped with the insomnia?


Marian said...

Hi julie,
thanks for the info on your mom; sounds like she may be going through the same type of thing.

like all of my symptom, the neck 'droop' and pain come and go. NSAIDs seem to have little or no effect. it does improve a little when i get out and move around; maybe i just need more exercise.

Wow, you're just now moving from agonists to levadopa? you must be doing well. Sinemet (carbidopa/levadopa) will change your life for the better, though, assuming the side effects are tolerable. For me, it was fantastic! I hope it will work out for you.

Yes, the DBS has really helped with the insomnia! I still use Ambien to get to sleep, but once I get there, i stay asleep until at least 4;00 or 5:00 a.m..

Thanks so much for the comments!


About Me

My photo
I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.