Triggers and Questions

I have started to become aware that when my eye starts to hurt, it's most likely that major pain will follow. Sometimes I am remembering I can take the "rescue meds" the doctor prescribed, but sometimes when the pain starts I am not at home and, I don't want to take those and drive. I have made put the rescue meds in a pill box to keep with me, and it does feel good to know, if possible, I can take them. I still haven't really figured out any triggers, except maybe chocolate. Does stress play a part in this too? It is an underlying issue for so many things.

I have had, at different times, before I started medicine, pain lasting for an hour. Is that also common? This is all still new, and I think I am secretly worried and, I don't want to think about it. I am afraid about how I am going to get through work - I really need to work and, I don't want to take any more time off. Also, the doctor said I need to stay on neurontin for a while, and then slowly lower the dose. He hasn't said for sure this will go away. He said he thinks so, but it's not definite. That's the part that scares me. I guess I need to stay in the moment, and be grateful that the medicine has started to control the pain, most of the time.

I am hoping everyone has a good day tomorrow. Thanks again - so very much- for all your replies.

I think the uncertainty of all of this is so hard, too!! I , like you, was recently diagnosed and have had success with tegretol--but have twinges now and then that remind me..I did have a lot of pain and frequent jabs and then a constant aching. I did not have the really nasty pain for a whole hour at once. That must be bad...

I like the idea of having the rescue meds with me all the time..I think the fear of the pain is really hard to deal with. Just having the meds always available lowers the stress of it all! From what i have been reading some people go years with success with medicines and even have long remissions. A lot of people on the site have had a really tough time--but not everyone does. Did you try tegretol at all--I read that is a good one to start with b/c it usually works. Hope you fell 100% soon!

Hi Hayworth, So sorry you are experiencing such pain and also confusion over what to do, what you can do, and want. I’ve been in your boat. Right now my pain is managed with neurontin, lorazapam, two anti depressants, and something to control stomach pain, which seems to be a by product of drugs. Oh, and I had the mvd surgery, lots of counseling to handle the disappointment of having the condition, and I am on disability. Wow! You would think I’m one sick baby! Sometimes I am. Mostly though, the pain in my face comes and goes or sticks around for many hours at low pain levels. Spikes here and there make life unpredictable.

I’m learning to breathe through more minor pain until it subsides, and learning the value of “stop, drop, and rest”. We must rest in order to live with this terrible condition.

I feel so sad for you who must work. Keep striving for disability, and seek help to get it. You shouldn’t have to bear the brunt of doing it all by yourself, or your break out pain will put you even more in jeapordy. Many tender hugs, and I would weep torrents of tears with you if not for the antidepressants I’m on. I still can understand your pain though and empathize. Laurel

How insensitive of me to write so objectively to you. Sometimes my pain is close to unbearable and then I am reminded of the horror of high levels of crazy pain. There is always a strong fear that my pain will return with a vengance, yet, I really work not to allow my severe pain to become chronic. This is the secret. Chronic pain is a joint effort on the part of the brain and the injured nerve to disable you. Work with your brain to develop pathways around locations of chronic pain. Be kind to yourself and insist others around you do the same for you. If they can’t understand, find compassion with new people. Living with TN is one of these places. Love, Laurel

Thank you,Laurel. Your advice and support means a lot to me. Yesterday I had two ocular migraignes followed by the neuralgia pain. I am at my full dose of neurontin this week. I agree that it's important to find ways around the pain.

What is the rescue meds you take? I would like to ask my doctor to let me try taking the pills. So far I can't found anything to help.