Trigeminal neuralgia

Hu Lillypink

I can't say what is common however I have two different medications for my problems (2 years plus).

I am on ox carbamazopine, an off shoot of carbamazopine but much more expensive. Far less side effects but You may need to put  pressure on your GP to get it. I am on 600Mg three times a day and that fixes the shooting pains.

Then I am on Lyrica (a nasty but effective drug) 50Mg three times a day for the pain I had above the eye. More like a very nasty headache that never goes away.

I tried many combinations and this was the first one that worked. I started on 200Mg Lyrica and turned into a zombie. Slowly reduced it to current levels and it controls my problems.

In short one drug just didn't do it for me. It was if I had two separate ailments that required two separate solutions..

Good Luck

 

hi baudwalker did you have an MRI??

Did I have a MRI?

5 so far , 2 more scheduled next week and when my chemo is done (last session next Monday) they want a PET Scan where they use radio active injection.

I have had half a dozen CT scans, Ultra Sounds as well I expect they have more images of me than most others by now. They are hunting for some sort cancerous growth somewhere but can't find one yet.

Last effort was to look at MECKELS CAVE area but it is too deep in the head for normal MRI to be useful. They did ultra sounds on the saliva glands and that was a waste of time. 3 minutes it took the operator to find there was nothing there.

When Neuroligists can't find something they get more and more frustrated and chase further and further for a real reason.

Sorry to be so cynical but an hours drive for each go plus all the wasted time sitting in waiting rooms is starting to become extremely tiresome

Good Luck with your efforts

(PS .. the server returned an error when I posted the last reply so I thought it didn't make it)

 

Hi Lillypink - I believe the thing is that the name - trigeminal neuralgia - is because its nerve pain (neuralgia) affecting the trigeminal nerve which has three branches across the face from the ear.  So it can centre around the lower jaw, the upper jaw or the eye/forehead, depending where the problem is.  Of course its never quite as simple as that but that may help to explain.  maybe you could google a diagram of the nerves in the head.

Hi Lillypink

My husband had same symptoms of stabbing head pain only in temple and doctor prescribed  carbamazopine. As he was already on sertraline I read the label carefully and found the drug is an anti-convulsant so refused to give them to him. Apparently once strated they are with you for life unless weaned slowly. Took him to 2nd opinion who referred to opthalmic surgeon and his pain turned out to be Giant Cell Arteritis - the consultant was initially reluctant to carry out temporal biopsy as no other  symptoms but the biopsy was very positive. 60mg prednisolone then saved his sight as untreated the condiiton causes vision problems. Please ask your team to check this out as misdiagnosis is easy.

Hi Lilypink

I have just had a soft tinnue Ultra Sound and it too the doctor operating the device 2 minutes to exclaim her disgust that the procedure was ever requested

Had my 5th MRI scan this week and it was VERY thorough. Took over an hour with a contrast injection as my lot are trying to at the inside of MECKELS CAVE which is deeper into the skull but has the same nerves going through another bone section that can cause the same symptoms. They are looking for a tumor which they haven't found yet and never will. The next move is a PET scan and if that fails probably and amputation of the head will solve it forever.

I am going to get all my pictures and open a stall at a local market I will have so amny to get rid of!!!!

I am on 1800 ox carbamapine but was on 2400 earlier. the 'ox' version has less side effects that the ordinary version

Hope You get a result they can prove and all the demons go away!