Quote:
Originally Posted by BethO2L
Welcome,, even though it's under these circumstances..
I have been a support group leader for many years and no one has ever described their TN the same way as I do mine...it may be that you really are having fairly "normal" ATN symptoms but how you perceive the pain and describe it may just be different than how others do.
I am not saying that your pain is any less or any less difficult to deal with,,I'm just saying that I would not loose too much sleep over your perception of it,,I would be more concerned about getting the pain manageable.
Most people with TN end up taking a "cocktail" of meds to control it,, especially as the disorder progresses.. I think that since you are taking Neurontin that adding Lyrica may be a good option to try and control the more Atypical pain....
Also,, are you taking Neurontin or are you taking the generic form??? I have found that with ALL my TN related meds,,I must take the real med not the generic...I find that the generic form of these meds do not work well for me...so keep that in mind.
I do take Neurontin and Lyrica together, which is unusual but for me they are very effective together,,so it may be something to consider. The best advise is to talk to your MD and see what he suggests...if you are tolerating the Neurontin well you can easily add to that dose. Raising it to 3600mg is well within "safe" ranges (I have been up to 6000mg but I don't suggest it!!!).
Another thing to consider is that Neurontin wears off more quickly that Tegretol...so perhaps breaking up your dose to 4 times a day instead of 3 might help.... It is very common for TN patients to change their med schedules to fit what works for them..so even if you stay at 2700mg daily if you break it up into smaller doses more frequently that could help give you better pain coverage...
Hope some of that helps...again,, I think your description of your TN is not that uncommon it's just not exactly how everyone else describes it...but then again no one describes it exactly the same way...
Good Luck and hope the pain becomes more manageable.....Beth
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Thanks Beth, the advice helps a lot. This has been very frustrating to this point but I am learning to cope. I am on the generic form of Neurontin and it has made a difference. I just don't think I am taking enough and I'll have that discussion with the Neurologist soon. It's just 300mgs 3 times a day.
I am managing the pain as it is at a tolerable level, it's now trying to also manage the associated sensations. They actually seem to be on a schedule moreso than me.
Again, thanks for your post.
Dan