Trigeminal Neuralgia Support Group

I'm so sorry to hear of your pain. I too suffer from TN. Describing the pain to anyone never does it justice as it is the worst feel in the world. In case you haven't seen this site, go to http://www.tna-support.org/ as they have lots of resources for you. There's lots of different drug therapies for this pain so make sure your doctor is aggressive in finding what's right for you. I ultimately had to have brain surgery for the problem on my left side, but thankfully I have been pain free for 13 years. However I now have the pain on my right side and it's controlled with Tegretol and Lamictal. But the side effects of brain fog and lack of focus are taking a toll on me.

As bad as the pain is, keeping a positive and hopeful outlook is hard as that sounds is so important. This pain took a couple years off my life because I allowed it to. Finding a way to cope with it is very important. Trust in the Lord.

Fred

Thanks... tegratol (sp?) and baclofen + the chiropractor seem to be helping right now. I checked the dite and bookmarked it. Much appreciatted :-)

You know -- I'm also going blind from RP. I'd MUCh rather have RP than TN anyday. At leats it isn't painful, and I can work around RP. TN pain just floors me.

Again, thanks. I appreciate the help.

Out of curiosity, have they done any tests as to the source of your TN? Have they suggested any treatments beyond that of the symptom of pain?
In my own case they've done carotid Doppler to check on blood flow but that is about it. They also are treating it with Gabapentin/Neurontin which really makes the difference between taking painkillers and not.
Most likely mine involves diabetic neuropathy. It also seems to be triggered by pain from dental problems. A tooth might hurt, but then that triggers the TN which then takes over. Unfortunately my health coverage ends at the gum line.

I was diagnosed with this after having gum surgery 7 years ago. My periodontist had not dealt with this and had to pull in someone higher up. Later that year, when it flared because of a sunburn, I went to my regular physician for meds. He didn't believe me and had to call my periodontist. I could hear him talking to him and asking questions. The tone of his voice said it all. He did relent and gave me meds, but now I just have my different dentists prescribe the meds. I know too well how painful this is and I am sorry for your pain. Have you tried famcyclovir? I am treated with this and pain meds and they usually work within a few days. I also pre-medicate with the famcyclovir before any dental work, since this seams to always set it off. Let me know what you think.

I am so sorry. I would have commented earlier but I just joined too. There are many medications that can help. As miserable as it sounds, you may have to try quite a few to find the one that works for you. Tegritol seems to work for lots of people. Many doctors cringe having to deal with a patient that has TN because it is hard to find a med that works. What really irritates me is the ER doctor that thinks a shot of ibuprofen will get rid of the pain. What that doctor really thinks is that you are there to get high. Unfortunately a lot of people do just that. If you do have to go to the ER tell the doctor right away that you are not there to get high. Be very firm and confront him or her if you get the feeling they think your there to get high. In a way you are because that’s the only way you can get relief. I have been up for 48 hours many times, unable to sleep, due to wave after wave of pain. Sounds crazy but, I have found that when I feel an episode starting I talk to my self softly and say “not now, not now, please not now”. Saying it softly is evident; the less movement the better to keep pain away. The fear of an episode is what haunts us all. Hang in there.
Take Care
mikeh

I have been dealing with this horror for almost 4 years now. I'm sorry to hear that another person is now suffering from this.

I have pain 24/7. My doctors say I have an extremecase of TN. I feel like I have 8 ice picks burried to the handle in the corner of my eye, a little monkey that sits on my face punching me, and 2 big pieces of rebar being shoved up the side of my head. It took two years to regulate the pain.

Now the medicines are not working as they did in the beginning. I hate my life and can't wait to die. I am so tired of being in pain. I feel so alone. My family is not as supportive as I wish they were.

I wish they could walk in my shoes for 1 day. They make me feel guilty for being sick. I'm tired of playing the medicine game, I just want to die.

It is so hard dealing with this and trying to keep a job and take care of the house and my two children. I hate that I miss out on life, I am a prisoner of my own home.

I am set off in pain by talking, chewing, swallowing, breathing, wind hitting my face and the worst is cold. I can't be in temps lower than 73 degrees. I wish this disease would just kill me.

I hope you find relief. Tegretol and Neurontin used together are some times effective, ask your doctor about those.

Pinky