Introducing the new Trigeminal Neuralgia Community

[Med Help]

Hi,

We have just opened up a new Trigeminal Neuralgia community. Please note, these are un-moderated communities. The forums are located at: http://www.medhelp.org/forums/show/298

MedHelp

[going_nuts]

Hi...Six months ago I was diagnosed with bilateral trigeminal neuralgia (both sides of face and rare to have).  It was two weeks after we had been on holiday in New Zealand.  The neurologist suggested that I had picked up a virus and prescribed me medication. I have been on Tegretol, Lyrica, Trileptal, Dilatin and Neuroton with no success.  

I decided to do some research and also get my body checked from top to bottom. Firstly I went cold turkey off the meds  and then I had my eyes checked to see if there was any retinal damage that was all clear.  I went to see an ear nose and throat specialist to check for any acute sinus problems and aok there too.  

Next I went to a chiropractor and when I told him what I had been through he suggested as it was on both sides of my face that it probably had something to do with my neck and spine.  He is the only person who has made any sense thus far.  He put it down to all the things you do preparing, visiting and returning from holidays eg handling baggage, sleeping in different motel beds, the flight and not to mention anything adventurous that you might do while you are away like we did...jetboat and bungy jump (the latter I might add that was the first thing I mentioned to the neurologist). After two weeks of adjustments 2-3 times a week I am feeling near perfect. The chiro thinks it will probably only take about a month and all will be well again...the neck just has to get used to being in the proper position again.

I am not sure how my partner survived my mood swings, tiredness and total bitchiness but I am glad I had and still have his support.  There are support groups around you just have to ask around.

I hope this has helped you a little and good luck in your hunt for happiness!

Trublu

[blueskynet]

That you opened this new forum on the day I was diagnosed is amazing.  I was searching for other individuals with this condition and there experiences with medication.

Actually, the neurologist suggested that I have "atypical" trigeminal neuralgia.  My MRI is scheduled for next week to rule out other problems, etc. I have had three to four what I call "episodes" wherein the pain in my face jaw and teeth (left side) accelerates to near unbearable levels and remains so for up to 12 - 18 hours.  I was recently given Vicodin, which helped me with two episodes but the one this last weekend was at a pain level of 10 even with heavy Vicodin use.

I have been prescribed Neurontin and am on my second day increasing the dose to 600mg.  I feel very woozy and off-kilter.  Will these sensations subside?  Will I become more used to the medication?  I can't even imagine have 900mg tomorrow!

My research on this condition does not make me feel hopeful about a resolution of this problem.  I really fear having another episode so I will continue the medication; however, I need to know what else I can do--lifestyle, vitamins, whatever, to help alleviate this.  I am in a state of shock that I may need to continue this medication forever.

[IsurvivedTN]

A related discussion, How I researched, survived, and overcame TN (NO PAIN) was started.