Thanks for setting up this forum NHE.
I know TN is not MS. But I hope this space will help those of us who may come here to ask WTF is going on?!
When I was diagnosed with TN (10 years after my MS diagnosis), I was shocked (excuse the pun). Mostly I was very upset that diagnosing TN wasn't simple.
Like many I thought it was my tooth and took off to see my dentist. He knew about my MS diagnosis and I ended up having an MRI. It took months for me to process all of this information.
I didn't want to take the classic TN meds - mainly because the side effects were pretty similar to MS. Why would I I want more of the same?
My GP at the time gave me amytryptaline and it settled after a few months although the dose had to be increased to 70mg and then tapered down.
What I have learned is that no-one knows your body as well as you do. If I overdid my swimming I knew the neck pain could lead to a TN episode. Also being stressed would flare it up - was this nerve infected with a herpes virus? It might be.
Anything that caused shoulder tightness - lie overdoing my lengths in the swimming pool, or slouching on the sofa awkwardly, would predispose me to TN. You have to get to know your body - my physio at that time was surprised that a cranial nerve could be affected by skeletal muscle. But yes, it can.
I have various things that I try to suppress the episodes - hot baths, sometimes I apply geranium oil diluted with a base oil on that side of my face. Sometimes physio and massage help too. I have to avoid foods that trigger the pain - for me that includes oranges..
Warmest wishes to you all
J
Trigeminal Neuralgia
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