Trigeminal Neuralgia

[Sharon69n]

Anyone from NJ? Anyone dealing with Trigeminal Nerve pain and pain in arms ? Can't take it anymore

[Cllcanada Top Poster CURE Hero]

I have TN, in conjunction with post herpatic neuralgia, PHN. My TN is transient perhaps a few times a week, the PHN is constant, and I have had both for 5 years. I was on gabapentin for a few months, but it didn't help and side effects from the drug, were issues.

My triggers are cold air or wind, brushing my teeth on the right side, occasionally chewing on the right.

I hope you are under the care of a specialist...

Here is an excellent overview of TN

ninds.nih.gov/disorders/pat...

~chris 🇨🇦

[Name-1 in reply to Cllcanada]

I think it easiest and safest way to do CyberKnife or GammaKnife.

Sometimes it takes longer.

[Sharon69n in reply to Cllcanada]

Mine is post Herpes simplex virus also, I see my hematologist on Monday, been having a lot of issues between Trigeminal neuralgia and pain and swelling of arm,breast so had an mri with brain and cervical spine and brain came out good , have severe spinal stenosis and bilateral cervical lymphadenopathy... Thank you

[blowinginthewind]

Hi Sharon, I have atypical Tn, and pain in my neck and across my shoulders. It is completely unrelated to CLL, it is caused by an accident many years ago. Being atypical, I have pain much of the time in the affected area, but rarely do I get the "lightening bolts". My suggestion to you would be to consider seeing a pain management clinic, assuming that it is financially viable - I notice you are in NJ. I am in UK but had insurance at the time; however, insurance wouldn't cover pain management clinic, so I went to local hospital on NHS. I found it very helpful, there was a psychologist as part of the team, who helped me deal with living with constant pain and other peoples reaction to me being in pain. Take care, and be gentle with yourself.

[thompsonellen]

I grew up a Jersey Girl, and was in Westfield for Christmas. I live in Philadelphia now.

[Sharon69n in reply to thompsonellen]

I know a few people that live in Philly, I'm from Freehold and now in Jackson...

[astefanovich]

I have TN along with CLL/SLL. It was my Facial Pain Specialist who discovered my CLL. He told me that my Lymph nodes were crazy and to see an ENT. After a biopsy, I was diagnosed with CLL and continue to take Carbamazepine. It gives me some relief but cold knife surgery is an option.

[Sharon69n in reply to astefanovich]

Thank you for your response..

[Sharon69n]

Thank you everyone