Foggy's "Invisible Illness" Support
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Bilateral Trigenimal Neuralgia (on both sides)

Hi can anyone else around my age (45 yrs) give me some advice on medication, MRI, Surgery etc for this condition. I have only had it for 2 weeks, but seemingly I am on the maximum dose of everything and starting to get the same symptoms in my left side. I have had to call the doc a few times in the night for medication advice to control the pain and have 4 weeks to wait till I see a Specialist. Also, do any of you have problems with the lining of your nose. Mine has got thicker and drier and is driving me nuts but not as bad as the pains in my back teeth and head. I struggle to eat and drink.

7 Replies

amitryptyline, gapentin can help x sometimes steriods are used x


The first line drug that is used is called oxcardazepine. It is a real miracle pill for most people that try it. Your primary MD can give to you until you see the specialist. Also, purchase a book called "Striking back", author; George Weigel and Kennth Casey.

Check out another website called TN facial


I started getting the symptoms on one side, i.e., tooth, ear, head. But this followed a series of dental treatments and an ear infection, one of which I'm convinced started the whole game off. X-Rays and Silogram, MRI, showed nothing. Saw a neurologist who was only interested in giving me 5 months supply of pregabelin. It knocked me around so much, I stopped taking it. He seemed unwilling to look at causation and immune to my argument, "why take a strong drug like pregabelin when one, 200mg ibuprofen kills the pain stone dead". Frequency and severity of attacks are getting less. All I'm saying is look at causation, dying or infected teeth, acoustic neuroma, teeth clenching at night and jaw muscle and joint problems have all been cited to me as possible causes. Ask the questions!!!



I hope ou are feeling a little better.

I have this too, I had a microvascular decompression done just over 12 months go, its where they try and move the nerves that cause the problems and put a piece of Teflon behind the nerve to stop it causing problems...

I had this done but it only worked for about 3 weeks and then it came back again..:(

The op itself is not too bad, but afterwards it feels as if your head has been run over by a bus...

Look into this as see what your doc says, it does work fro some people, unfortunatley not all.

Good Luck with this..

Nita xx


Hi Debby,

Unfortunately there are many of 'us' out there. First things first; your meds, if you have been quickly diagnosed after the pain started ask for Tegretol / Carbamazepine. This is the first drug any GP or Neurologist will prescribe for TN, 600 to 1200mg should do it but combinations of meds might be necessary when the pain persists. Side effects are strong in the beginning and a slow build up is essential. Watch out driving and or managing machines. Reaction time and eye movements are impaired and light sensitivity will make a sunny day, computer/phone screen to bright. Secondly do your research. Ask for a blood test after about 3 months and push for a referral to see a neurologist; they will make sure an MRI is taken before the first visit so a diagnosis can be confirmed. There is a brilliant TN site You will find a lot of info there, I also found that the forum site has a lot of very friendly members who all support each other and answer all your questions. Take care and I might see you back on the TN site. Viv


Oh and an answer to your dry nose question,.... I know exactly what you mean and I believe it's not a real 'thing'. I notice now I'm in control of the pain, 600mg of Tegretol does the trick for me, the dry nose sensation is also gone. I was diagnosed 4 days after the pain started and I was in so much agony I couldn't move, after 2 weeks build up to 600mg Tegretol the pain started to ease and is now 8 months later almost gone. A cold will give me back the sensation of a dry nose, but I know it's not real and will go away again. Because you're in the early stages it's all very unsettled. Get the meds sorted, set an alarm in your phone to take them at set times, very important. Take care.


I do get a very dry nose and it's very uncomfortable, because of it I get a lot of crusting inside it and it's very sore and when I blow it in the morning ( because of the crusting it feels as though it's blocked) I get a small amount of bleeding but luckily doesn't come to anything much just makes the tissue a bit pink. For me this seems to be caused by dry eyes and I find that using the eye gels and an odd squirt of betnesol ( hayfever steroid spray) up the nose now and again seems to sort it enough. I get trigeminal neuralgia because of an Acoustic neuroma that was diagnosed because of a sudden hearing loss and facial weakness and an MRI scan but it is very rare.


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