Just joined and I look forward to participating

I have had this for 14 years now and I also have intestinal problems classified as IBS pain/cramps. I also have small pains in my upper chest sometimes. When I have these other pains my TN and Occipital Neuralgia get far better. I believe these are all related and controlled by the same nerves at the skull base as we as all affected by continual inflamation in the body that begins in the colin. The TG and Occipital nerves that exit the skull base cross interfere with the nerves that also affect the heart, breathing systems and intestinal tract. I just joined the group and want to share what I have found to be the best reliefs and medications that I have figured out that best work for me. Just yesterday for the 3rd time I was able to ward off a full blown attack! In the past month I have a new medicine that combined with my other two during the beggining of an attack seem to work WONDERS!! I am anxsious to share what is now working for me.

ALSO: Just last week I completed my evaluations with Nerosurgeon and TGN and Occipital Neuralgia expert Dr. Kim Burchiel at OHSU, Portland, Oregon. He was not able to provide any surgical treatment for me because no visible problems can be found on my MRI and CT scans. I have my own hypothesis about this medical problem that I have had for 14 years now. I can predict it all like clockwork. It has a very specific timing mechanism and I have identified all the things that set it off. I look forward to particpating in with this group!

Welcome David!!
Although sorry you have to be here…
What meds are you taking?
Mimi

What meds are working for you? What signs do you get? I know fronts set mine off or exercise the wind a hat my glasses combing my hair and so on…

Stephanie,

After trying all meds for 14 years these are the ones that work for me and I use them very sparingly. I only use the pain med with pain over a 4 or 5 when I know it will progress into a full blown PAIN attack if I otherwise did nothing. I have learned how to massage my neck and head myself and I feel the light massages are an absolute must to keep the muscles calm. I also keep my environment above 73 degrees as cold and quick weather changes set it off. ALSO! The worst stimulator of the pain is looking at a computer so I stay away from them as much as possible. I always had perfect vision before this started but interestingly my vision started going bad the same time my facial pain started. My facial pain is mostly right sided but my right eye vision is worse than my left and I have continual pain around my right eye. The right eye vision and facial pain are definitely related. When my pain gets bad my right eye vision gets even worse whereas it does not affect my left eye. Over the last year I have also been receiving Occipital Nerve Blocks at the base of the rear of my skull. In the last year with receiving the Occipital Nerve Blocks every 60 days and the medications I am taking I have found that I am warding off most all of the terrible attacks that I used to receive. Don't get me wrong. I still have this and it IS NOT FUN, but I am winning the battle.

1) Vicodin only for severe pain as I know better than using it often. If you use it too often it won't work well and you can get addicted. I have never drank alcohol or used drugs my entire life so I don't have any tendencies towards addictive behaviors and don't need to start it.

2) Diazapam for the muscle spasms - it helps stop them and calm the tightness down. This is an old drug and has very few side affects.

3) And most recently and very sparingly an oral steroid called Dexamathasone 4mg (this really knocks it out quick!) - but this has to be used sparingly as steroids are not good to take for very long periods. I generally only take 3 tablets, one every six hours for the first tablets two then the third I take about 12 hours later.

As far as how my progression of pains/symptoms flow it would be this order:

1-Pain starts in right, rear neck deep inside near the Occipital lobe.

2-Pain then travels to right ear, right temple, right eye, right jaw and right rear neck muscles.

3-As it worsens I get sharp pains instead of steady increasing, constant pain.

4-As it even worsens I get far increased numbness in my upper front right teeth.

5-Then my right, top side headache that never goes away starts getting more & more intense.

6-I then get dizzy and feel "odd" in the right side of my head.

7-My right eye vision then gets very poor and I need to take my glasses off, lie down and rest.

8-Then all muscles in my face start getting very painful and hard. The muscles actually have hard spots in them.

By this point I have better started taking the meds I mentioned above and apply a warm heating pad to my right neck and face. If it keeps getting worse and I can't stop it then the pain can go to 8 & 9 and I am screaming bloody murder!!

At this level of pain I will always get nauseous and start throwing up. If I do get this bad it takes about 2 to 3 days to get better. I always make sure I am much better before going back to work or it will just get bad again within a few hours.

Hope this helps, I would suggest to ask your doctor for these meds and see if they help.

Nicely written discription and treatment. Thx for posting

I have Dr Ahmed Raslan, who is also at OHSU, as my neurosurgeon. Over time, it seems Dr. Burchiel has gotten super conservative in his approach to TN. I love that Dr Raslan is more apt to think outside of the box, when it comes to treatment of TN. I notice you mention that you believe TN is caused by inflammation. I had bone compressing the nerve The bone at the base of my skull was compressing my nerve, but I was not diagnosed with TN until 1995 though I had symptoms even in my teens.. Phantom pain is being looked at as the reason I am having on going pain issues.

I have heard of people getting TN after having shingles, or bells palsy. I know people with MS can get TN, so I guess anything can cause it. I am grateful you mentioned what you did about the Vicodan. Over the years I have heard a lot of stories of people getting psychically dependent on them. You are very wise.

I notice you live in the land of the ducks. I live in Portland. There is a group just for people living in Oregon. You are more than welcome to join us, if you would like.

I am glad to hear you have a mix of medications that work well for you.