I was diagnosed with an inoperable brain tumor (Pontine Glioma) in 2007 and have a severe pressure feeling in my head. It's not a headache or migraine because I have had both AND the pressure feeling. The pressure never goes away (and quite possibly could be the cause of my recently diagnosed Abducens Nerve Palsy). Recently I met with a new doctor that tried me on Amitriptyline and it actually made the pressure much worse. Now I am on the generic of Topamax and while it is not worse (I think I still have lingering effects from the Amitriptyline) it doesn't seem to be doing much of anything either. I am on 25mg a day. Is this just too low of a dose? Does anyone know what dosage would be suitable (ball park) for a condition such as this? I really don't want to give up on a drug that might help me because I've been dealing with this for nearly a decade now. Also, has anyone had any experience with a problem like mine? My doctors don't seem to understand just how painful this really is and it's hard explaining how an ache in my head... is NOT a head ache (or migraine). Thanks in advance for any and all responses =)
I hesitate to give medication advice. I can say this, tho. Topamax does come in higher doses, 50mg, 100mg, etc. However, if what you're on now isn't doing any good, perhaps your doc will wind up changing it to an opiod type medicine, but this is not something to ask for. Simply tell him that tumor is pushing on your skull and it is far more painful than any headache or migraine you've had in the past, and what's even worse is it's constant.
Topamax IS used off-label for nerve pains, which the nerves are what tell us something is hot or cold or painful or soft. So, could be your doc will want to raise the dosage amount and see if that helps, and it might. He may even want to try another similar type drug, like perhaps pregabalin (Lyrica). But in the end, you might need opiates.
Most docs are reluctant to give opiates, but the fact of the matter is if they are used for pain and it kills the pain, the situation of addiction is a background issue, particularly when your pain is NOT going to go away, I don't imagine. I wonder if a new scan of your brain might show how far the tumor has advanced, and I also wonder if someone can nail down the idea that it's wound up causing your palsy now on account of it's pushing so hard on everything around it. With those things as evidence, could be your doc will be more responsive to your complaint of pain and seriously work with you on getting your comfort levels straight.
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