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[QUOTE=monkeymom;4611227]I suffer from nerve pain assocaited with Chairi malformation. Even though I am decompressed, the nerves that were compressed are now mad, dead who knows. It's been over a year.

I have permanet damage to my trigemenal nerve, possibly sensory nerves and optic nerves.

I am on a LOAD of meds every day to help control the pain. Between all my meds I am on 9. The ones for nerves are lyrica and lamotragine. Both I am nearly maxed out on. I have other conditions that were irratated by the decompression, but they do not cause me severe pain.

I know no one is a doctor, but what else is out there? What can I do to control this never ending pain? Just when we think it's under control, it's back again.

Help... I am at a painful loss here!![/QUOTE]
Tegretol (carbamazepine) has been the medication of choice for trigeminal neuralgia, so it should be something your doctor would want to consider. Another drug related to Tegretol is called Trileptal (oxcarbazepine) and may work as well as Tegretol but with fewer side effects.

Other drugs commonly used for neuralgia include Elavil (amitriptyline), Pamelor (nortriptyline), Klonopin (clonazepam), Neurontin (gabapentin), Remeron, Cymbalta, and (less commonly) Keppra and Toradol. These are just a few of the drugs I've taken at one time or another, and there are many more. Keep trying until you find one that works. It can take a long time before you find something that works, and you may have to convince your doctor to try something different. I assume you're under the care of a neurologist for your Chiari malformation, so try talking to him/her. You may also want to look for a good pain clinic near you. Best of luck!
You are surely on a lot of meds. Have any of them made a big difference in controlling your nerve pain, and have any not seemed to help much at all? I'm sure that you and your doctor(s) would hesitate to add many more meds to the mix, but if some aren't helping much, substitution may be in order. Both the Lyrica and Lamotrigine are for nerve pain, so one or both may be changed to try something else, such as Cymbalta or another SSRI/SNRI med.

Permanent nerve damage is awful. I have it as a result of several surgeries, but luckily I am able to get by on just a few meds (with Cymbalta helping the most.) Keep pressuring your doctor(s) to put you on the minimum meds that provide the maximum benefit, and make sure you get your liver checked at least twice a year.

You MAY benefit from lose dose opiods, since you are using the tylenol-3 for break-through pain. Vicodin or Suboxone may help, with the latter perhaps better suited for the mix of meds you're already taking.

Decompression surgery might be an option if your trigeminal nerve hasn't been permanently damaged. Only your neurologist/neurosurgeon would know that for sure.

Best of luck. I can't say that I know your pain, but I do understand what permanent nerve damage can do to you. Try not to give up.

Jeff


[QUOTE=monkeymom;4619068]The list of medications that I am on are:

Synthroid - Hypothyroidism (present before pain management was needed)
Ritilan - ADHD - also present before all of this
Lyrica - 100mg twice a day for nerve pain
Lamotragine - 200 mg twice a day for nerve pain
Diamox ER - 500 mg twice a day prescribe by Neuroptomologist for extra fluid buildup
Klor-con M m20 once again for the fluid buildup
Furosemide 40mg twice a day potassium supplement
Pramipexole .25 treats RLS
Indomethacain 75mg once a day for extended daily pain management
Pramipexole .50 (night dose for RLS)

as needed - tylenol 3 for pain break thrus.

I am going in to have an EMG done next week. The neurologist wants me to also look into the placement of a shunt - He thinks it would get me off some of the medications I am on.

I am at a loss...I wonder if I will be in pain for the rest of my life... do I just need to accept forever pain as a part of my future??[/QUOTE]
I can't claim to understand your particular pain or the other things you're dealing with, but I also have dealt with extreme pain since my first nerve surgery some 32 years ago, about 6 months after I graduated from high school. Since then, I have seen around 60 doctors and have taken over 50 different medications (I stopped counting both when they reached 50.) I've also had a dozen surgeries to either cut out neuromas, remove scar tissue, insert nerve stimulators, try new stimulator electrodes, reposition the electrodes, and attempt to do the stimulation at the spinal cord (dorsal column.) The only things that haven't been tried are deep brain stimulation, motor cortex stimulation, periaquaductal grey stimulation, a morphine pump, and direct administration of anesthesia to the occipital nerve (the nerve where my trauma occurred.)

When things really started getting bad, mere puffs wind on my hair would trigger knife-like pain in the back of my head. Sometimes the pains would come even without anyything touching my head. However, that would have been preferable to the year and a half that I was bed-ridden because of constant, severe pain. I literally spent only hours out of bed during that time, and most of that was to see my doctors. I honestly don't know how I managed to keep from going insane. At the very height of my pain, I was taking over 300 mg of straight oxycodone each day, and the pain was unbelievable. My children were 14 and 11 at the time, and it was difficult for them to see their normally active, happy dad in such agony.

It all came to a head on July 2nd of 2007, when I managed to overdose on the oxycodone. Luckily, an addictionologist was on call covering neurological rounds the next day, and he switched me from oxycodone to Suboxone (buprenorphine plus naloxone.) I have since reduced my narcotic usage almost to nothing, and should be off of it by the end of this year (2010.)

Another thing that made a HUGE difference was a finding that my vitamin D levels were seriously deficient. Within weeks of starting high-dose (50,000 I.U. per week) of Vitamin D, my overall pain levels dropped significantly. In fact, that is what allowed me to cut back on the narcotic and also allowed me to reduce the only other med (Cymbalta) that I've been using for nerve pain.

In the process, I have learned better coping skills, and that has allowed me to decouple the suffering from the pain. It's mostly a forced relaxation technique, where I can allow the pain to exist without affecting me as much. If there's anything positive to say about constant pain, it's that somehow the body can often learn to compensate by allowing the conscious mind to disregard the pain as not being a real threat. What I have most of the time is the equivalent of a bad headache, but I've been lucky enough to be able to tolerate it with adequate nutrition, exercise, positive attitude, and being able to be an active member of my treatment team. I had to "fire" several doctors before I found a couple of really good ones, and that has made a tremendous difference.

My marriage did not survive the stress, but at least I'm on speaking terms with my ex. We had our share of normal relationship issues, but there's no doubt my illness was the major factor.

I urge you to make sure your vitamin levels are checked. Vitamin D levels are chronically low in much of the population, possibly because we work and pursue recreation indoors much more than previous generations. It's such a factor in chronic pain that doctors are now being told to check blood levels of Vitamin D for all muscoluskeletal pain syndromes, especially when the pain levels are not commensurate with the amount of trauma or disease.

Best of luck. < edited > Finding others with similar stories has helped me realize that I am not alone in my struggle, and you need to know that you are not alone, either.

Jeff





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