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Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)

Occipital Neuralgia AND Cervical Dystonia???

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Unread 10-20-2012, 07:12 PM   #1
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Default Occipital Neuralgia AND Cervical Dystonia???

Hello, I am new here. I was diagnosed with Cervical Dystonia approximately 3 1/2 years ago. I began Botox injections immediately and they have definitely been a God-send.

Over the past 8 or 9 months I have begun have almost debilitating headaches that do differ somewhat from the headaches I was used to with the CD. Just this week I was diagnosed with Occipital Neuralgia. I had the nerve block and will go back in two weeks for another round of injections. I was also given Cambia for when the pain is extremely bad.

As of right now, nothing seems to be making a dent in the headaches. I am just wondering if anyone else is dealing with both of these issues at the same time? If so what treatments have you used and what has been your success or failure with those?

Thank you in advance for any information.
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Unread 10-21-2012, 03:23 AM   #2
Peter B
Join Date: Jan 2008
Location: Perth, Western Australia
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My headaches were not much helped by steroid injections. Remedial massage was the first breakthrough, indicating that the cause was muscular.
Eventually a high daily dose of magnesium chloride (diluted in water) stopped the headaches.
I'd suggest that you research magnesium for headaches, migraine and so on. Lots of other benefits too from this essential mineral.

Cured me.
See my mosaics

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Unread 11-07-2012, 01:35 AM   #3
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Default Cervical Dystonia/Occipital Neuralgia

I was diagnosed with both, Cervical Dystonia 6 months ago and Occipital neuralgia about 4 years ago. I too get Botox for the neck cramps and spasms which works great for about 2 months. I have tired pretty much every kind of treatment for the Occ. Neuralgia and have been disapointed at the results. The only thing that works a little bit is a procedure called an RFA or Radial Frequency Ablation, its where they go in and burn the nerves that branch off the spinal cord on your neck. This brings my pain down from a 10 to about a 7-8, which isnt much but its something. I still cant work and my quality of life isnt the greatest. No one will truely understand how bad and dibilitating these dieases are unless they experience it. I have done a lot of research on these two dieases and find the majority of people are as fusturated and desperate for help as you and I are. I live around ice packs, procediures, meds and the local E.R. I am hopeful they will find a treatment that helps. I hear the nerve stimulator works well for some but most insurance companies dont cover it. I wish I could be more helpful but I have yet found a treatment that has drastically helped. I hurt so bad sometimes I wish I could just die, even though I dont actually mean that, but pain makes you say things you normally wouldnt. My pain gets so bad in the back of my head and neck that i will throw up for days and will then have to go to the hospital for some I.V morphine. the pain feels like sharp metal in my head. The last person wrote about the Magnesium, it didnt help me at all but maybe it will for you. sorry i cant be more possitive or helpful but Im still looking for something that works for me and in five years I've yet to find it. Ahh to live another day. Hard to stay possitive about something soooo painful
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Unread 06-21-2013, 09:24 PM   #4
Carol Cronk
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Default cervical dystonia

I/Stacey? reading through your pain, saddened me. I was diagnosed six months ago, and now in Perth awaiting Neaurologist HELP??? from royal Perth hospital.
have had no botox yet, but soon to begin.Ive taked the clonazepans then diazapan,with I think a little help keeping me dozed up a bit, Off all now awaiting a fresh start with this new Dr of hope and faith he can help... At night to get to sleep I take two mersyndol with two Tamarze, after an hour and some they put me down for some sleep.
IF my new neaurologist has any new answeres for "relief" of this harsh disease I will pass it on. The occipital nerve pain, it appears you have tried all. My thoughts go to you, as one who lives in this horrid disability. Carol.
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