Well I went to my g.p. again today (the same one that wouldn't give me anything for my pain last week because she felt it would defeat the purpose of weaning me off of the Tegretol and Neurontin) and what a different appointment I had today...maybe because she didn't have PMS or maybe because my hubby went in with me...who knows?

Anyway, my tegretol level which should be between 25 and 50 was 51 last time I was tested...this time after 2 weeks of a lower dosage my level is at 31...perfect!! However, the pain is worse because I am on less meds of course.

I called my insurance company to see if they would cover acupuncture and the answer was no so the g.p. said that is out of the question because it is just too expensive.

I then reminded my g.p. that my neuro had suggested a small dose of Lyrica instead of the neurontin and I couldn't believe it but she agreed! I had a really bad episode with a dosage of 75mg tid last year where I couldn't speak, couldn't see, so it really scared me off. However, I am going to try 75mg/day in place of my evening Neurontin dose and see if it helps. The g.p. said that I do have room to play around with these to find what works as this is such a low dose. At least she is giving me the opportunity to try to make my life tolerable! Last week she told me to live with it for cryin' out loud!!

I made her aware of the really bad numbness that I am having on the whole left side of my face and she said that it was probably due to the trigeminal neuralgia...I calmly let her know that I don't have trigeminal neuralgia, I have Paratrigeminal Neuralgia and they are two totally different things! I asked her if she has looked into Paratrigeminal Neuralgia at all and she said she hadn't had a chance. I said that if she was still going to be my g.p. that this was imperative and the best person she could get the information from is the neurologist so she said that she will look into it in the next two weeks.

She is also going to make an appointment with a pulmonologist, which she was supposed to do last week but didn't because she thinks my lung problem is because of smoking BUT I DON"T! And neither does the fellow that did the lung function test and I am sticking with him. I feel that if there was a problem it would have reared it's ugly little head last July when I quit but no, it didn't show up until a few weeks ago. I am having a lot of breathing difficulty and a lot of pain in my right lung area in my back every morning...just as well to have it checked I think!

Lastly, I asked my g.p. if I was on the same dosage of meds for two months, when then did the "symptoms" come and go if they were caused by the meds? She said she doesn't know and I appreciate her honesty. I also asked her if the neurologist feels that all the symptoms I have been having are caused by the meds and she responded that the Neurologist thinks that the amount of meds that I had in my systems were toxic and that it will take a while to clear the remnants out of my system and in the meantime I still require some sort of pain killers. This makes it very difficult to discern what exactly is going on. She is going to be in contact with my neurologist regarding my case in the next week and I have an appointment with her again in two weeks. She is hoping that my neurologist may have some more answers for me but she said that there are no promises.

I can be happy with that for now...at least they are giving me something to work with and they are admitting that they just don't know what the he** is going on with me. It was the fact that they would not admit that they didn't know...they just tried to humor me and in one case made me suffer terribly for a whole week! I feel now that they are taking my illness, whatever it may be, seriously!

I gave my g.p. my forms for her to fill out and send to the government for application for disability insurance and she took them from me and stated that yes, you have every right to this and I will have them filled out and sent in right away for you. What a relief that was! I will be sending in my forms tomorrow and crossing my fingers...sure could use the money after being unemployed for a year!

Guess it's just to wait and see for another two weeks but I feel a lot better than yesterday...there is hope and I guess as long as I get the female dr. at the time of the month when her hormones are not in a knot I just might be ok???

I am glad that your GP is starting to listen to you. Maybe taking your hubby in more often would help. I remember asking my Dr. one time when I was frustrated with him if it was a woman thing that he would give my hubby what he needed but not me. I do think they treat men and women differently.

I hope you find some answers on what is going on with you. I will say on the smoking. My husband smoked for years and he quit in the 70's. He didn't develop major lung problems from the smoking until later on in life. When he died last year he was on oxygen from the smoking. It is possible for it to come on later in life.

I hope you start seeing some better less painful days soon.

Ada

We/ I welcome you to Neurotalk,
it is a nice forum the people are great, I see you have found the cool graphics... have fun

Hey,
Welcome to neurotalk, if you need anything just ask
Thanks

Patriot--
Just wanted to mention a few things.... Your neurotin level--- the one that was 51, was only 1 point higher than the "norm", so I would not have been too concerned with it unless you were having horrible side effects. I've had many levels (for various meds) that were above the norm range and caused no problems; plus how the lab does levels and time of day taken can be some factors.

Glad your GP listened to. I have a few doctors that go back and forth like yours and it gets so frustrating. Hope the Lyrica helps !

L2L

love2laugh...it was my Tegretol level that was 51 and it was causing terrible side effects including inability to speak without slurring or losing words, vertical double vision, equilibrium difficulties, memory difficulties etc. I had been on Tetregol for about 14 years for seizures and my neurologist would just increase my dosage when I complained of nerve pain without keeping track of my levels.

I have to take exception with your statement "I've had many levels that were above the norm range and caused no problems". Being "over the norm" was a definite problem for me and to dismiss it could be dangerous. Fortunately I have a neurologist that insisted my levels be tested and found that this drug was becoming toxic in my system, hence the neurological problems. I have read much literature on these meds and I feel that as they recommend, you should ensure that your physician is checking your levels regularly BEFORE you get into trouble and possibly some trouble that you can't back out of!