I had a huge C5-6 disk rupture directly onto my spinal cord in January.  On the 26th of January when I got into to see my doctor he sent me to have an MRI. The radiologist that read the films called the results back into my doctor and I was put on bed rest until I could get in to see my Neuro Surg., due to the danger of me becoming paralyzed.  It was only a matter of days until I got into see the Neuro Surg.  I had my surgery on 2/13/09.  I had a cervical fusion w/plate and screws; and he said I had degenerative disk disease; he said the disk above or below was moderately worn and I eventually would have to have them done also. He also said it could take up to a year for my hands, arms and shoulder blade symptoms to go away or I could end up with permanent nerve damage.  They will not know until then.

Well, needless to say the surgery through me in cycle Cry.  The last cycle I had was back in 2005.  Dealing with the muscle spasms in my neck and the cramps and numbness and burning sensations in my hands, arms and shoulder blades has been unreal, and the beast just waiting to pounce at any second also.  Cry  

My question is my doctor is wanting to put me on Neurontin or Lyrica, he says this would help me with the nerve pain & the clusters.  Anyone w/any experience with simuliar circumstances?  I have heard that some people end up having seizures as a side effect of these meds and that the seizures didn't go away when the med was stopped.  Any help would be greatly appreciated.

Praying for understanding & PFD for all,
Gigi

Hi Gigi,

I'm using Lyrica at the present time.  It has its side effects (drowsiness, an occasional disconnected feeling, constipation, and swelling in my feet), but I'll put up with them.  Also, for some reason, I'm having more shadows than usual, and have even woke up in the morning to realize I was having low grade CH (this morning it occurred).  Lyrica hasn't eliminated my CH during this atypical cycle I'm experiencing (I'm episodic, and usually have CH in late fall & early winter), but it is blunting the CH pain to the point that I don't need to take abortives to stop attacks.  So I'll keep taking the Lyrica.  

Can you tell me the dosages you are on?  And how did it take before you seen results from the medicine?

I have had the feeling that a nerve was firing from the spine of my neck, but come to find out I can apply pressure at the right side of the c5-6 disc that was fused and it will dull or almost stop the lighting striking burning pain that goes through my head and around my eye and jaw and neck (bad burning pain at incision site), temple.  I believe that this cycle I'm going through now is mixed with neuralgia cause normally I apply a lot of pressure in the temple area and side of my head that I'm getting hit and it helps somewhat to dull the pain.  but now I can barely touch that side when getting hit it makes it a lot worse and the burning when I touch that area is unbearable.  But I can apply pressure beside the disk and it has helped.  Keep in mind that I have only done this with my last cluster, what worked that time may not work the next but I'm sure I will find out when the next one comes. The nerve seems to be firing beside the disk and the pain shoots up the spine of my neck and then out through my head (eye,temple,neck, etc.)
I still have all the signs of cluster unbearable burning sharp stabbing pain, eye tearing, swells shut, runny nose, etc.
My cycles usually start off gradual then build to a peak, this time it started off like my last cycle ended at a peak.  

Thanks for your help.
Gigi

My doc put me on Neurontin for Restless Leg Syndrome, but I was reading the PDR and it says Neurontin is a vasodialator (countering the vasoconstricting effects of CH meds). I switched to Mirapex and this seems to work for me.

No.  I am being sent to a pain clinic for pain management.

The paperwork I had to fill out stated that if I didn't follow through with the doctors recommendations (i.e. nerve block etc.) that my pain meds for the pain I am having in my neck, shoulder blades and arms and hands would be cut off totally.  

The pain meds do not help with the clusters but between the pain of the clusters and the pain post-op from the disk rupture I can't take it.  I have actually been in so much pain with both at the same time that I have picked up my pistol and wanted to blow my head off but I couldn't bring myself to do it and plus my new husband took the gun away and hid it.
The medical profession actually have no idea what kind of pain I'm experiencing; they have no empathy or sympathy.  I am scared to death if I go to the pain clinic and the doctor wants to do a procedure and I will end up in more pain than I'm already experiencing.  The thought is just totally unbearable.  I can't take any more pain to this degree.  My family doc gives me my injectable triptan
he gave me 10 vials with 2 refills, but he will not allow me to take more than 2 doses in 24hrs and no more than 2 days per week.  I got the vials to be able to draw up a 2mg dose and make 3 doses out of 1 vial but the pharmacist said that these vials are intended for single dose not multidose vials and have no preservatives added; she said it was up to my doc and me if I want to take a chance of infection and possibly becoming septic from an injection, even though I am using a new sterile needle each time and making things as sterile as possible.

At one point they had me on Oxycodone but I told them I didn't want to go on a stronger pain med., I'm already scared of addiction, so they put me back on the Hydrocodone 10/325, I ask if they would decrease it down to the 5/500 and they said that that would not control my pain.  So, I have been on the 10/325 since 1 week after surgery plus Robaxin 750mg.

I have taken Neurontin before and it made me dizzy and nausea.  I'm scare of nerve blocks because I also have heard some horror stories.  I don't want to seem uncooperative with the doc but I am totally scared of some of these procedures.