Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

I know so many of you are going through so much and sometimes I feel like I am just feeling sorry for myself so maybe venting to those who can understand will help.

Last week, we had snow and my son wanted me to play with him. Of course, I could not - way too cold - he cried. Luckily, he has friends this year in the neighborhood so I was happy making hot chocolate hourly and running the dryer like crazy. Then, this past weekend I attended my daughters cheerleading competition. I was prepared to hurt because they are so loud. People screaming, the music. But I wanted to support her. However, 20 feet away from me were 2 men that had the most enormous cow bells that they beat on with drum sticks. Seriously. I don't think I could have handled that without TN. So everytime they did their "thang", I had severe shooting pain.

I finally had to be taken down a notch on the Tegretol, so my Neurologist added Lamotrigine. I don't know much about this drug, but hope it helps. He is also sending me to a Neurosurgeon but I am not ready for that. I saw my mom go through so many surgeries with her cancer treatment, I have sworn it off. I think God is letting me know that I really don't have control of things. My boss asked me to get out my crystal ball and let him know when I am coming back. I hate to say it, but I don't know! Doesn't he think I wouls tell him if I did? My mind is gone. I know Aleshia called it a Tegretol Typhoon in her head - I know what she is talking about.

Since I am more normal in my thought process than when I was on Neurontin, my husband seems to think I am well and he and my kids get frustrated with me when I hit that wall and cannot do anything else. What about them? This is the first time I have had to stop and take care of myself and they don't seem to like it. They all laugh when I get everything screwed up, but I get so frustrated with myself and don't always find it funny. I was an intelligent woman with a career and now am stuck at home and when I do venture out, I get lost driving to familiar places.

Thank you all for allowing me to vent.

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Comment by Sue (s1mather) on February 5, 2009 at 1:03pm
Oh Debbie, i know how you feel, i have 3 children, my 9 year old son wanted me to go and play in the snow, we have had quite a bit this week, with another thick layer today....and no school for kids again. I couldn`t go out and play and yes it did really upset me, who have i become?? i am a big kid at heart with everything i do but not anymore. The snow all fights, snowman building, snow angels...no more for ME. It doesn`t affect anyone alse around me. Gardening...i love gardening...not anymore.
As for your family frustration...i too am having to take time to look after myself,alot of time. My husband seemed to find it difficult and frustrating to watch me going through something he can`t see or understand. My kids still think mom should be doing everything for them..slowly over time i am able to do less and less. I feel like a useless burden. when i found this site i came across the blog entitled `trigeminal neuralgia for people who are the carers`..something to that effect. I read it and cried because it was able to describe what was happening to me. I then asked my husband to read it, it really opened his eyes to what i felt, what i was going through. I then asked my 2 daughters aged 14 and 16 to read it. Some of it has sunk into their heads, they are slowly, oh so very slowly (as thats the only speed they have apart from stop lol) It is still very frustrating for my husband to watch me go through the pain i am having, but we WILL get there. Debbie we are all struggling with the same problems and pain on this site, we all understand. You can allways give me a shout and we can do some venting together. Keep your chin up.

Sue

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