Quote:
Originally Posted by dllfo
Hi Lily, Dave here. My ATN seems to come and go...somewhat. It came back a few weeks ago and has stayed. 1000mg a day of Carbamazeine does not completely stop it. ATN pain can push through the Carb. on some days.
I read that Opiates have some success, but I cannot use them anymore due to life threatening Respiratory issues. Sooooooo I am not sure what to try next. You have something for your nerves? A stimulator? Dare I ask what it does for you/us??
Yesterday, I had something VERY unusual happen. On the upper left side, between the 3rd tooth in and the wall of my mouth was .... something like a polyp? As big around as my little finger and it felt like it was about a half inch long. Just hanging down. I used my tongue to push on it. It felt like liquid inside. After my tongue pushed it around, off and on, for about an hour, I noticed it was changing shape. It was a similar size, but horizontal to the roof of my mouth. This morning it is almost gone. It was never painful to touch or "push on".
Anyone have ANYTHING like that?
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Hi Dave,
Yes, ATN can be really difficult to deal with - especially the part where the pain just stays and stays. Mine is V1/V2 (forehead and cheek), but otherwise similar. I haven't had anything like you had in the mouth, that kinda sounds like a blister of some sort.
I take trileptal, cousin to tegretol, and also take gabapentin and nortriptyline to try to keep it at bay. Also opiates - but mine breaks through nonetheless, so I don't know what help I can offer. I went in to talk with my neurosurgoen again to talk about options (it's a bad sign when you know all of the people in the office!), and he offered to put in a neurostimulator. Officially it's called a Peripheral Nerve Stimulator, and the leads are strung under the skin in the face. It is really a Spinal Cord Stimulator, used "off label", to interrupt the nerve signals in the face. It will be put in on the 1st of September. It will be the first one that my NS has done.
I am one of many that BMW has lured to this site to discuss this option, bless her heart. This is a relatively new option for people with TN/ATN/AD (and for their NS's), one that they can possibly try before they go for the really big surgeries, like Motor Cortex Stimulation and Deep Brain Stimulation. So I will be giving it a try. I am optimistic that it can help me, it does work for certain pain that I get, and we are going to try and tweak it a bit more once it's in to see what else we can make it do. I had a trial with it a few weeks ago. They do that before they put it in permanently.
I hope that this helps explain these things, and who knows, maybe it will be one of the things that eventually gets tried on you. For me, ATN has been really hard to get control over, which hopefully is the exception rather than the norm. Do you have a neurosurgeon yet? Hopefully you won't ever need to get that far!
Lily
