Saturday, June 21, 2014

Diagnosis...The Beginning,,,

I may look great... - Trigeminal Neuralgia (TN) - Online Support Group



OK...so the nightmare begins right? This pain overwhelms you on one side or worse both sides of your face, (like me). You have either spent tons of money going to the dentist, been accused of drug seeking by the e.r. or insane by your general practitioner before someone advised you to see a neurologist.




At this point, the drug cocktail, "wait and see" what works, because they really don't know what will respond game begins. Usually the first drug that is prescribed is Tegretol, (carbamazepine), an anti convulsant, 100 mg and gradually increase your dosage. When we begin with neurological meds, there is a litany of side effects that enter our world of suck, such as behavior changes, mood changes, anxiety, depression, restlessness, difficulty breathing, difficulty sleeping, swelling of face tongue and throat and my personal favorite, low white white count, i.e. compromised immune system.


I was initially put on 50 mg Topamax, lovingly called "dopamax" because I also have classic migraine without aura. With that dosage, it was just inert materials, no medicine. The only plus with topamax is that when you initially take it, you lose weight. The negative and it's a MAJOR NEGATIVE, is that it makes you stupid and I mean incredibly stupid. Like Beyonce on Final Jeopardy stupid. You're incapable of intelligently expressing a thought because you can't find the words you should know. There is such a physical and mental slowing that it causes a depression almost as bad as the neuralgia the drugs are trying to help. The dumbing down goes away in a few weeks to a few months, but the process is soul crushing. Topamax is usually used "in addition to" other drugs. So, this is like the gateway drug for most people and they go from here. The side effects in addition to gross stupidity are constant numbness and tingling in the hands and feet that never goes away and I mean never. This is called parathesia, the pins and needles feeling when your hands and feet fall asleep. Even when you discontinue the drug for a few days, the numbness is still there. Even your neuro will tell you to "Just get used to it". Lesser known side effects are cataracts and liver damage.


During the early stages of the disorder, learning what trigger the disorder is tantamount, and there are more triggers than things that can sooth the pain. Family and friends will not understand the crippling pain and trying to explain will become extremely frustrating simply because they haven't heard of the disorder and to them, it's not real yet. What's important at this stage is getting a handle emotionally on the disease, because emotional well being is a trigger point along with diet, exercise, caffeine, artificial sweeteners, heat, cold, hormones and barometric changes in temperature.
I was very strong for most of my life and I am strong again.

Enjoy the rest of your day and keep the faith!

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