Sunday, November 21, 2010

Roller coaster week

I started my anti-seizure medication, Gabapentin, Monday. It has been a roller coaster week! The plan is to take 1 each night for a week. If I don't see any progress I take 2 pills for a week. I can add a pill each week if I'm not seeing improvement until I'm up to 6 pills a day. If I still don't see improvement I have to switch to a new medication and I will continue this pattern until I finally find the right one. I took the first one Monday night and when I woke up Tuesday I felt like I'd been run over by a truck. I felt HORRID!!! On top of just feeling so horrible my head felt like it was spinning. Some of the side effects are fatigue and dizziness. I already have fatigue and dizziness so added fatigue and dizziness was so bad!! I thought there was NO way I could live like that!!! Then when I woke up Wednesday and Thursday I felt a bit better but not much. Thursday night Brian convinced me to take a muscle relaxer I had been prescribed a couple years ago, along with my gabapentin. When I woke up Friday I felt FANTASTIC!!! No pain! And can I tell you that sleeping straight through the night without waking up at midnight or 4:00 in excruciating pain because the ibuprofen wore off was AMAZING! I can't tell you how WONDERFUL I felt! I can't tell you how long it has been since I felt THAT good! Around 8 am the pain started to come back and I took some ibuprofen and then throughout the day it got steadily worse but I felt great for a few hours and that was SOMETHING! Saturday when I woke up I didn't have the nerve pain. My head felt like it was in a vice. Warning: TMI coming up! I was having a visit from my Aunt Flo and the cramps were comparable to labor pains and just horrid all day and the ibuprofen didn't touch the pain. I only occasionally take darvocet and I would have done that yesterday if it hadn't been recalled on Friday for causing heart problems in people that take it and even causing deaths. Apparently gabapentin can cause added problems with menstration and can even cause early menopause and stuff like that so that's a super fun side effect. Anyway, even though I was in pain in other ways yesterday I'd take that over the nerve pain any day of the week! This morning I feel good again. It takes time for the medication to build up in your system and it takes time for your body to adjust to it but hopefully once everything gets adjusted it will be the perfect solution and I won't have to take more than one pill a day. I really don't like to take medicine of any kind. I hate that I am even taking so much ibuprofen but I'm grateful it helps take the edge off the pain since most people with TN don't get any relief ever from anything.
There are 2 permanent solutions we have learned about. One of them is a gamma knife procedure where they pinpoint radiation to the nerve which damages the nerve which stops the nerve from causing pain to the face. It is all done on the outside, no surgery. I think this would be an awesome solution but I've read that it usually helps people who have pain that comes and goes but not so much with people who have it constantly like I do. I am going to find a neurologist who can perform this treatment and see if it would work for me. The other solution is to cut open your skull and treat the nerve right up to where it goes into your brain. Sometimes it is caused by a blood vessel pressing up against your nerve so when they cut you open if they see that that is the cause the move the blood vessel away from the nerve but sometimes it will move back there eventually. This procedure sounds very scary to me and the recovery is excruciating so I'm really hoping the gamma knife thing will work for me so I don't have to take medication all the time that can cause side effects that suck or have to have surgery. Hopefully I can find something that will help me feel human again and will help me be the kind of mom I want to be and that my children deserve!!! Here's a picture of the nerve and everywhere it hurts me. Fun stuff.

2 comments:

Kale and Rowdy said...

This sounds horrible! I didn't even know such a thing existed. I really, really hope that somethings help you out....and SOON!

Tara said...

You poor thing - that doesn't sound fun at all....Hopefully your body will adjust to all the new meds and you won't have to take so much!!