S U N A and Trigeminal neuralgia

I can't speak to SUNA (just looked it up for the first actually) but my TN has changed symptom wise quite a bit in three years. The medication I was using is becoming much less effective and the search continues.

I was on Carbamazepine and now I have low sodium levels in the blood so dropping the dosage looking for improvement. Gabpentine (Lyrica(?)) also less effective so the two main sources of relief are in trouble.

Now the medicos tell me there are issues with the Parotid gland as part of the mix as well. They tried to get some cells with a fine biopsy needle and achieved not enough cells for an acurate diagnosis, and an infected wound source, and a swollen left cheek which has made the whole face more sensitive.

Next try in a week with a REAL core sample size (that is if they can keep me strapped down long enough).

Seems choosing just where the nerves are causing the issues is a real lottery. Most issues seem to be lower on the head and this is right up at the ear level.

I am having enough trouble getting medicos with experience with TN without changing the diagnosis at this stage of the game.!!!

Sorry I can't offer any type of knowledge on SUNA and for getting off topic with my issues but I will watch here to see what I can learn, Problem then is the direct injection to the brain to try and to keep the info where I can find it again.

GOOD LUCK

I looked into a variety of possibilities for the pain I had been experiencing on and off over the last 10 years or so, and initially decided that it was probably Cluster headaches. I thought this because I had suffered with Migraines over the left side of my head since teenage years and the current pains I get were (and are) focussed in my left eye. The pains seemed to fit best with CH. But then SUNA  also seemed possible. I got nowhere with my previous GP so changed surgeries (many other issues not being addressed too). Needless to say my other issues got sorted out and I am now on appropriate medications for them. But the eye pain had been put on the back burner as the other problems were more important to me at the time. However, in the last year and a half I noticed that the eye pain I had been getting changed. I had also noticed stabbing pain/electric shock like pains and tingling/numbness over other parts of my head and face (worse on the left). So a visit to the doc and description of the pain and hey-presto TN. I had actually ruled this out initially as most of the literature says that TN is most likely to occur in the mandibular or maxilliary branch. My pain was, at first, confined to eye. It soon spread elsewhere, my teeth felt as if they were on fire and my jaw had been punched repeatedly.

I am now on Carbamazepine and have had the Amitriptyline dose increased (I take that for the other health problems) and so far there is an improvement. When the pain flares up in my eye it only lasts for about a day whereas before it would last for 6 - 7 days relentlessly. It does still wake me up but now if I get the medications right it is less prolonged and for the most part less severe.

I can sympathise with your being frightened as the pain from TN is evil. But there is hope. There are many options once drugs have become ineffective. SUNA too has options for treatment. Research as much as you can and, as I now do following another forum member's comment, set your alarm and take your medications on the dot. It does help. 

Personally I think there is little difference in the descriptions of the various atypical headaches such as CH, SUNA etc. They do just seem to be a variation upon a theme and all are excruiatingly painful and on a par with TN in that regard. Fortunately there is a great deal of research being done into these types of pain irrespective of their cause. There is light at the end of the tunnel (even if it does make the pain worse, at first!!)

Best wishes.