Hi newbie here

Hi I have suspected TN. I was put on plaquenil as the derm couldn’t figure out what was wrong with me. It’s my dentist who assesed me with possibly TN.
I went off the plaquenil 6 weeks ago due to major hairloss and other side effects, the plaquenil did help though. I didn’t suffer any attacks while on it. Can I ask why?
I heard that for TN you need to Be on epileptic drugs. Just wondered why plaquenil helped,
Apparently plaquenil helps people who have MS too.

Hi and welcome to the group! Sorry about your diagnosis, but you will find this group to be very supportive and informative. I had never heard of plaquenil before, but just read that it is prescribed for lupus and arthritis pain, so perhaps that is why it helped. Most of us take some type of anti-seizure medications, like Tegretol, or neurontin, to help with the pain of TN. If you can, you should find a neurologist who is experienced in TN to find which medicine will be best for you. It often takes a bit of time to find the right dosage. Go to the Facial Pain Info tab at the top of the page to read more about medications.
I am glad you found this group, and hope that you keep posting !
Best,
Christine

Hi Raz, It was dentist that diagnosed my TN too. I have not head of plaquenil either. Have been on Tegretol and Lyrica and yes it is a trial and error to find the right medication and dosage that is right for you. We all respond differently. Hope your able to find a Neurologist who can help soon. Best of luck and look forward to hearing from you again.

Teresa

Hi. Remission can come from meds or be spontaneous. Please get the book Striking Back…dr ken casey…learn all you can. Sorry tiny phone here. Look under doctor’s tab here…look at group tab topical meds group very helpful. …lastly 4 now google images #1 atypical face pain. #2 trigeminal neuralgia. … print or save which images describe your pain. … rare…we are about 12 people in 100,000.

I don’t know why you would have been put on plaquenil… I was on that at one point for my rheumatoid arthritis. I didn’t like the idea of side effects on my eyes (blindness as worst case scenario), but while on it, I didn’t notice my TN was any better. I think at the time my TN was pretty good anyway…

My understanding is that Tegretol is the “drug of choice” for TN. Or other anti-convulsant drugs.

Never heard of anyone being on this for TN, but I have seen it for Lupus. Who are you scheduled to see to get an official diagnosis and when? I would make a long list of questions to ask them about.

Thanks guys. Well I’m supposed to see a oral specialist but I’m seeing the dermatologist on Thursday I want to rule everything out . I am
Confused myself and not sure if my symptoms also border with a rosacea diagnoses. Rosacea is usually observed on both sides of the face. All of my symptoms are on the left hand side.
I fair so I do get flushing especially if I’ve been exercising or have a glass of red wine.

I have burning sensation on left cheek, left eye watering, pain on the bridge of my nose.
The burning sensation is one of the worst pains I have ever encountered. But to look at my skin it’s never red when I have the burning pain.
Prior to all this happening my left eye twitched for years.

I also get skin flaking off due to me touching it, but then again it’s only my left.
The right side of my face is perfect.

If it is rosacea it would make sense for the plaquenil to work.
Hence why I’m confused.
In my research plaquenil has worked for people with Ms.

The first derm I went to said I don’t look like I have rosacea, if I did it would be mild, I’m getting a second opinion on this, I want to rule out any skin conditions first.

Dentist is convinced I have TN.

My only thing is the flushed face look I get sometimes confuses me and I start to think it might be rosacea.

I started taking the plaquenil again but half a tablet and it has subsided the pain.

Even when I was on plaquenil in the start I could tell when’s flare was coming but it was a background pain that was there the first 2 weeks to 4 weeks after the 4th week it completely disappeared.
Tested negative for lupus, rheumatoid arthritis, my ana test was normal

Did you look at the google images?

Yes and I don’t seem to look like having rosacea. Unless they show only severe rosacea. And I don’t have any acne.

3 experts say definitely not rosacea. All three suspect neurological disorder.
Dermatologist said plaquenil can work for neurological disorders but its not used as a med for neurological conditions.