Trigeminal neuralgia?

[Queencara78]

Hi all, I am curious to know if anyone on here suffers with trigeminal neuralgia and how they are treated and cope please?

[hathi999]

There is a link between trigeminal neuralgia and a vitamin B12 deficiency. Dr I.S Klemes did some research on it back in the 1950's.

Dr. I.S. Klemes, medical director of the Ideal Mutual Insurance Company, did extensive research into this problem and wrote up his conclusions in the Journal of the American Medical Association for July 1956. He later wrote another article for the June 1957 issue of Industrial Medicine and Surgery. Klemes treated sub-deltoid bursitis (shoulder bursitis) with vitamin B12 with very good success. He concluded: "Vitamin B12 and folic acid both seem to be essential in the synthesis of nucleoproteins . . It seems certain that vitamin B12 is of importance in the metabolism of nervous tissue, although the mechanism of its action is not known . . Vitamin B12 has proved effective in relieving the pain of trigeminal neuralgia in a significant proportion of patients."

[hathi999 in reply to hathi999]

PS Have a look at this link difficulty-swallowing.com/s... and see if you have any other vitamin B12 deficiency symptoms? If you do, please don't take your doctors advice that your B12 levels are fine, there are so many reasons why people with "normal" B12 levels have significant neurological issues and other problems related to B12 deficiencies, do a quick google search and also look at the link to the MTHFR gene mutation in case its relevant to you also.

[Queencara78 in reply to hathi999]

Hi hathi999,

Thanks, that's interesting to know and I will check out the link. I first experienced this when I was only 15 years old but the nothing for at least 10 years, which then only occurred randomly.

However, in the last 2 years this has been happening more and more and in the last couple of months there is barely a day that goes by without an attack!

Also seem to have lots of other symptoms going on, I am no longer able to align images, which Orthoptist said is nothing to do with the muscles, so GP has referred me back to Neurology, as she believes that the optic nerve in the brain is now not working.

I see double permanently, and only covering one eye stops this. Plus my facial structure keeps temporarily altering too.

Sorry guys for going on, I am so sick of feeling like a hypercondriac.

[misty14]

Hi Queencaria

Sorry to read you have trigeminal neuralgia , a very painful condition. I had it a few years ago , as it's a nerve pain it's treated with drugs like Amitriptyline, Gabapentin and morphine . Hope your getting treatment for it, mine did settle after about six years. X

[Queencara78 in reply to misty14]

Thanks misty14,

Unfortunately no because my GP misunderstood the pain I was describing last year and thought it was temporomandibular joint disorder! Its only because I have researched so much, that I have recently made her aware.

[misty14 in reply to Queencara78]

Hi Queencara

You must get treatment for it as it's so painful. I see from a previous post you've been referred to neurology. Whilst your waiting your GP could prescribe pain relief. Keep in mind that if neurology isn't helpful ask to be referred to a Pain Clinic who will be. Hope you get help soonX.

[Queencara78 in reply to misty14]

Hi Misty14,

I think its also necessary to find out the definite cause too. I have read that its usually diagnosed in 50's or 60's and quite rare under the age of forty. I have had this since adolescence, so am being investigated for suspected MS as other symptoms are pointed to MS too.

[misty14 in reply to Queencara78]

Hi Queencara

You poor thing having it from such a young age and for such a long time. Good luck for your MS test results, hope you don't have it . Lupus can be a great mimicer of it. Cause and treatment are very important I agree. Keep us posted. X

[hurt-s]

I have it, the most painful condition i have ever felt. i saw a neurologist i

have taken two different types of medication.Both of them were anti convulsive meds. this last one works well,it is chew-able and easy to take ,also avoid drafts on or near your face even a ceiling fan will trigger an attack,i have had it for 7-8 years.

[Queencara78 in reply to hurt-s]

Thanks hurt-5,

I have been monitoring this very closely for the last six months now, keeping a diary too but there is no trigger.

[Queencara78]

Hi all just two more quick questions, can anyone tell me if there is any truth in this diagnosis and age please? and has anyone also experienced jumping/flickering vision?

I had a really odd turn some time back that was really bizarre.

Whilst studying, my hearing became affected where it was like the people in the room were suddenly whispering, my whole body felt like it wasn't really mine and my vision rapidly changed from blurry to the point when it was as though my eyes were blinking really fast.

Another odd occurrence is sporadically my face swells and looks quite distorted for a few minutes at a time, then goes back to normal and is always around the outer edge of the eyebrow round to my cheek bone only on one side.