Trigemanal neuralgia

[saraht670]

Can anyone offer any advice,my father has secondary trigemanal neuralgia,constant agonising pain,tablets don't work,a procedure where a needle is put into his cheek has given him no let up,please can someone advise???

[Moby]

Hi, I'm 43 and have TN on both sides since 3 years, although the left side has the constant pains. My GP prescribed Tegretol also called Carbamizopine, because I was diagnosed straight away when the pains started, this has helped with the meds to work really well, and most of the time, when taking my meds at the right times (very important to take them at set hours!!!) I am pain free. Some 'shadow' pains as I like to call them are there when tired, having a cold, being outside in a breeze, but that's become part of me and these 'shadows' don't really hurt, it's just a remainder the TN is always there. You might want to ask for Tegretol, otherwise have a look into the now most successful procedure which is called Micro Vascular Decompression., MVD.

There is also tna.org.uk, they have helped me find my way in the medical and have a helpline to call.

Good luck, and tell your dad hes not alone and the pains are indeed phenomenal and off the scale painful.

[Hidden]

I have peripheral neuropathy (PN), which I know is kind of similar to Trigemanal neuralgia in that both are caused by damage to the nervous system. You can read about PN on the NHS Choices web site so I won’t dwell here. My PN was causing me not to sleep so whilst waiting for a diagnosis my GP prescribed me 3.75mg Zopiclone (Z) tablets to take one or two before bed, I have only ever had to take one, though it still takes me about an hour to fall asleep, I then sleep solidly and even if I have to get up to go to the loo I then go back to sleep quickly. For my PN my GP has given me 10mg Amitriptyline (A) one per day. I was meant to take the A at about 7pm, which I did on the first go and decided not to take Z that evening, I fell asleep and woke up an hour later caused by a nightmare. The following morning I was quite dizzy and by the afternoon mildly intoxicated, but my PH symptoms were dramatically reduced. In my case the side effects of A seem to occur about 12 hours later so I now take the A as soon as I get up, which is 6-7am in the week and about 9am at the weekends (I would not set an alarm just to take medication). So my current régime is; I take one A in the morning and one Z at night and the improvement has been dramatic. The longer you take the A the better the buildup effect (I stuck it out even when it seemed the A was not helping), at 6 weeks my symptoms were even better. One of my symptoms was burning in the backs of my hands, I know there is no reason why rubbing E45 (I use Tesco own brand which is half the price) cream in would help but it does (a lot), I use a big dollop on each hand and massage it in for several mins. I hope this information helps.

[tramelia]

Hi, my husband has had TN for about a year now. He has had all of the usual medications, all to no avail. He was prescribed Pregablin for his Fibbromyalgia, and so fortunately found out that it worked for his TN, He takes 150mg am and pm and it works.

Sincerely hope it may be of help. All the very best

Tracy

[Tracy116 in reply to tramelia]

I'm really glad this has worked are there any side affects ? Can he. Drive and work while on the top dose of pregabalin .i have just started the low dose 75mg then I have to start increasing the doses .

[tramelia in reply to Tracy116]

Hi

As I said, my Husband is on 150mg twice daily. He was on 200mg twice daily, but due to an admission to Intensive Care due to sepsis and kidney failure, they took him off all medication whilst in there. It has taken approx. 5 months for him to get get back up to 150mg twice a day, and during that time he did suffer with his TN, but they had to increase slowly. When on max dose, initially he did suffer from some shaking and jerking, but over time, that wears off. He can drive without any problems. Due to several health problems, he is unable to work, but nothing to do with TN, although the pain was so bad that even if he did work, when the pain comes, he definately cannot work as the pain is so so very bad.

I too am on pregablin, currently on 100mg twice daily. I was started on 25mg, then every two weeks increased up by another 25mg until I am on what I said. My Pain Clinic specialist wants me to go up to 300mg twice a day, but we shall see how it goes, because you can side effects.

I hope that you can cope with it, and that it helps with your problems.

All the best

tramelia

[Marz]

Knew someone once who had this problem - it was LOW B12....have you been tested ? Result needs to be at the top of the range for good health....

b12deficiency.info/signs-an...

B12 deficiency is at high levels throughout the world and very often missed by the Docs who have little understanding. They don't have much training on vits and minerals

[Hidden]

I had severe facial pain that the neurologist thought might be trigeminal neuralgia. It was also triggering my migraine. I was given botox injections for the migraine. The neurologist explained that the botox is taken up by the nerves and might help the facial pain as well. Thankfully it did help and is now only triggered by stress and some computer monitors!

I don't know if botox has ever been given to treat just neuralgia but it might be worth researching and discussing with the Dr.