DIAGNOSED WITH T N NOT G C A

[supersayan]

so NEW UPDATE MRI SCAN INDICATES VASCULAR PRESSURE ON NERVE OR AS THE DR SAYS TRIGEMINAL NEURALGIA. YAY BUT WHAT NOW MOST OF THE MEDS HAVE NASTY SIDE EFFECTS, BUT I'M SO DONE WITH PAIN AND NUMBNESS. ANYONE OUT THERE ALREADY ON THIS ROAD TRIP FROM HELL ANY HELP APPRECIATED. CANADA CALLING OUT.

[casse]

Little confused, thought the only sure way of ruling out or diagnosing GCA was for the temporal artery biopsy, did u have? Mine was positive, they can see the large cells growing in your temporal artery. Just a thought, good luck

[PMRpro Ambassador in reply to casse]

It doesn't always come back positive - in maybe only 40% of cases I think. When it is positive, that is 100% certainty it is GCA, when it is negative, all it means is that they didn't find what they were looking for, the giant cells, and there is a range of reasons for that.

[supersayan in reply to casse]

Had MRI with contrast dye physical symptoms matched gca MRI showed no temporal blockage, no stroke but did show blood vessels in contact with facial nerve trunk at brain stem. So the TN diagnosis.

[supersayan]

Thank you for sharing your story and information. I have a phone consult next Tuesday with my neurologist. I'm checking out the available options for medication.

[aspydoodle]

Glad you have a diagnosis.

Meds work for some people but the side effects are difficult.

I’m on lyrica and do ok at a low dose. Most start with oxycarbazine or carbamazepine.

I’d suggest getting a neurosurgeon consult right away so you know your options. Hodaei in Toronto is one of the best. She offered me microvascular decompression which I’m doing or gamma knife.

Pain clinic offered me ketamine lidocaine infusions but not for me.

[supersayan in reply to aspydoodle]

My neurologist seems to think that it's more likely a migraine because of the facial numbness which most people with have but what do I know I'm a patient so she put me on a three-day dose of prednisone because she wanted to break the migraine well all it did was make me have a f****** flare up 2 days I have a headache that would kill a horse and half my face was numb so on Monday my family doctors going to call me ask me how the pred work then I'm going to tell him it didn't work things got worse and then they're going to put me on Tegretol or Trileptal and if that works oboy I have TN because that medication is helping I love jumping through the Hoops because of the doctors know everything anyway that's my rant for the day today Saturday so yeah two more days I'll get to talk to the doctor tell him what happened and maybe I won't be clutching my head with my hands as much

[Robinre]

Hi, I also have periodic flare ups with my trigeminal nerve. This began toward the end of my PMR which I had for six years (2 undiagnosed). I found that the medicine for my migraine headaches Butalbital, Acetaminophen, And Caffeine helps me when I get that nerve pain. The following gives some information about this.mayoclinic.org/drugs-supple...

Butalbital, acetaminophen, and caffeine combination is used to relieve symptoms of tension (or muscle contraction) headaches. Butalbital belongs to the group of medicines called barbiturates. Barbiturates act in the central nervous system (CNS) to produce their effects. Acetaminophen is used to relieve pain and reduce fever in patients.

[supersayan]

Yeah they gave me the MRI with contrast dye and my family doctor called me up read the radiologist report about the MRIs stating vascular pressure on nerve combined with all my symptoms one of which was facial numbness all of a sudden and neurologist no no no it's in a migraine it's not TN so now that I've jumped through hoops took the migraine medicine no effect no improvement on the symptoms of the pain now they're going to put me on TN medication and if that helps I have TN