atypical trigeminal neuralgia

[PurpleDuckie]

Recently diagnosed with atypical trigeminal neuralgia, pain on left side of face/eye/head. I also have rheumatoid arthritis which I take methotrexate 20mg once per week for. Does anyone else know anything about this, or what helps, in a lot of pain.

[PMRpro Ambassador]

I'm afraid there are only a few people here with trigeminal neuralgia. The reason it appears on posts is because it can be a differential diagnosis for giant cell arteritis which is one of the main foci of this forum. Not really sure what forum on here would be most appropriate.

I'm sorry but I doubt we can be of nuch help.

[Merryfield]

Dear Purp. Get thee to a neurologist asap. Don’t wait until you have to be hospitalized.

[pata63]

I've got Trigeminal Neuralgia, left side of face, eye, ear, and scalp above the ear. I am currently on 30 mg Amitryptyline each evening about 7.30 to 8 pm. That takes the edge off, and I don't get the electric shocks. I've had TGN (and associated migraines also L side) for years and it predates any PMR, but it does leave me with lingering uncertainty about whether or not I could pick up an early warning for GCA. You can read a little more in my bio.

Reading up on what distinguishes type 2 (atypical) from type 1, I could see myself in the description of some aspects of type 2. I didn't know there were two types. Learn something new every day. 😀 I had at least 5 years of neurologists not knowing if it was migraines or just TGN or both, how they interact, etc. But maybe that is just the state of the diagnostic arts? Do I have a type which is atypical atypical? 😜 More often I had low level pain rather than the electric shocks.

The other drug I'm on for this is Rizatriptan (Rizamelt) when I first feel a migraine/TGN episode coming in. That mostly curtails the worst symptoms, or at least shortens them.

The first time around I was on Tegretol (Carbamazepine) for some years, with a later addition of Nortriptyline. I had been off Tegretol and the triptylines for some years until the TGN started up again (reason unknown). I've been back to the dentist several times to see if there is something going on with my teeth again, but nothing so far. You should probably get checked out by a dentist because dental problems can also cause TGN symptoms.

Good luck, and ask if you would like to know more of my experiences with TGN.

[Lochy]

Although I’ve had PMR for nearly 8 years my TGN has been more recent over the past 3 years but I know the reason why and believe it’s totally separate from my rheumatology issues.

I had weird symptoms for a few years - tingly tip of nose, tongue, cheek. After investigation it was discovered I had a vestibular schwannoma which basically was a small benign growth in my brain and mine was located very close to the auditory nerve. Had radiotherapy to blast it and stop it growing but the result of this has been gradual hearing loss in one side and increasing TGN symptoms. Electric shocks in tongue and teeth, really debilitating. Currently on 6x carbamazepine daily. Had reduced to three daily but it recurs for no apparent reason so I've had to adjust accordingly.

So I don’t think any of it is connected but it would be impossible to have joined up thinking between my neurologist and my rheumatologist!! All I know is TGN can be horrendous to deal with.

[Saintmalo]

I don’t share your medical condition but I do share your methotrexate !!

I take a little bit more - but I find that each time is different. This isn’t at all helpful and I know that it isn’t what you want to hear BUT last time was great - I slept 10 hours! So take each time as a one off SO if you have a bad time it could just be a one off. Go to bed as soon as you feel a bit off and lay down.

If anyone else has any bright ideas - we’d both love to hear them!

[PurpleDuckie]

Thank you everyone for your replies, its going to be a learning curve, to try and get the pain under control. I was told it wasn't temporal arteritis as my inflammatory markers where not excessive - my late Mother had giant cell arthritis and polymyalgia and rheumatoid arthritis. I find it difficult lifting my left arm, even to put a bobble in my hair - can't do it, think I have a rotator cuff tear, waiting on ultra sound. The list goes on. Thank you again.

[DorsetLady PMRGCAuk volunteer in reply to PurpleDuckie]

I was told it wasn't temporal arteritis as my inflammatory markers where not excessive - my late Mother had giant cell arthritis and polymyalgia and rheumatoid arthritis.

Someone’s talking rubbish in the first part of statement, and the second part should be raising a red flag - makes you marginally more likely to have same. Not hereditary in the true sense of the world like some diseases … but there certainly can be a genetic link.

[PMRpro Ambassador in reply to PurpleDuckie]

About 1 in 5 patients with GCA don't have excessively raised markers so do be watchful. SnazzyD had normal range markers as she sat in the ED with her vision going. And you have a familial link - it is not hereditary as such, but can run in families, same genetic risk factors ...

[SnazzyD in reply to PurpleDuckie]

Hmm, lots of people have had what seemed like rotator cuff issues or initially one sided symptoms before their PMR diagnosis.

As PMRPro says, I’m one of those who had normal markers with GCA. However, I have to say the ESR was high for me at 16 when my coasting level is 4. Current I have a bad infection in my neck and my ESR is still only 12.

[PMRpro Ambassador in reply to SnazzyD]

Much like me - normal ESR for me is low single figures, It coasted along at 16-18 during a major flare but no-ne turned a hair as that is well within "normal range".

[PurpleDuckie]

Thank you for letting me know. I appreciate it.