Trigeminal Neuralgia.

[pieinthesky27]

Having pain for more than 2 weeks. Dentist says nothing wrong. Doctor wants me to take Carbamazepine for Trigeminal Neuralgia. Being a non pills type person, I am wary of starting these. Would much prefer any natural remedy first - to at least try. Any ideas from anyone who has/had similar.....?

[Spud7]

Hi pieinthesky27, I was the same as you and really didn't want to take pills but the pain got so bad i had to give in. But i also take omega 3 supps, magnesium, vit d, c and b12 - the b12 has to be sublingual apparantly! Cut right back on my caffeine and alcohol too. Make sure you research everything though as things can affect others. I rattle as i write this and yes, this is how dull my life now is 😂😂 let us know how you get on, good luck

[pieinthesky27 in reply to Spud7]

Hi Spud7. Really do appreciate your reply. May I ask which pills, what dose, how long you have had them and effects - good and bad!? I am having some success with pressure points as this takes the pain away for good periods and I am now looking into acupuncture. I can well see how sad life will become - the pain is unbearable and asprin does not touch it.....

[Spud7 in reply to pieinthesky27]

They're all pills- i got most of them from a health food shop but the vit i got from aldi, the effervescent ones and magnesium and vit from supermarket. I've only had this since mid December so don't know whether they're working or not and sorry just realised you meant the other pills off the doc didn't you? I'm on the carbamazapine and so far so good with those. Just 2 x 100mg a day. But i did find paracetamol did help a bit but take them every 4 hours - keep on top of them (obviously no more than daily amount) hope that helps.

[pieinthesky27 in reply to Spud7]

Thanks again. Very informative. Hope you stay pain free....

[tweenus in reply to Spud7]

Hi Spud

Sorry to hear you may have the dreaded neuralgia. I have had it for 15 years and was interested to read that you only had 200mg a day of carbamazepine, at the most I had 1500mg a day. I only got his when I argued with my doctor explaining that it was my pain not his, he had a think and agreed with me hence the 1500mg. I am now trying Tegretol Prolonged Release but the side effects make life difficult so I am now self dosing Tegretol up to 800mg. I have found that co-cocadmol works to some degree but that is 400mg 8 a day. These you can only get from a doctor but you can get 300mg from a chemist (Tesco). I do hope you find some relief that suits you, I found mine it was a relief. I have read some letters on other sites it would make your hair cringe.

Anyway kind regards Tweenus

[alan1111]

Hi pieinthesky; ive got attypical TN so pain 24/7. I take 5-6 ×600mg gabapentin /day to prevent pain. Withdrawals and hyper incidents if meds are missed; late etc. Hot and cold sweats cant sleep. Have you had an mri scan yet? Occasional drink fine but be careful how mucg. Constant lerhargy with bouts of energy throughout day.

[pieinthesky27 in reply to alan1111]

Hi Alan. I am only at the beginning of this (never heard of TN two weeks ago). Yours sounds very severe. I hope you get some remission at some point, which as understand can happen. I also heard there are operations and if mine gets really bad I will go that way I think.....take care

[Marz in reply to pieinthesky27]

b12deficiency.info/signs-an...

Scroll down in the above link to read the list of neurological symptoms caused by LOW B12. I have weekly B12 injections to sort pain after spinal surgery - but living in Crete I can buy OTC - which is impossible in the UK. You can buy on-line.

Jarrow Methylcobalamin 5000 mcg from Amazon are lozenges to be kept under the tongue until dissolved - thus avoiding any gut issues

[koffeekat99]

Hi

I have acupuncture for trigeminal nerve pain. It’s not TN and mine was caused by damage done to the nerve by dentists.

I had carbamazepine and was unable to work or drive. They made me very dizzy, everything was spinning and I kept falling over. I was told that was an extreme effect ftom the pills but now I can’t have any of that type of med.

The acupuncture keeps my pain at a manageable level and I go for it every 6 weeks. But my nerve is permanently inflamed meaning the pain is constant (for 12 years now). So it is not the same as TN. If you have TN there are particular symptoms and you should have periods where you don’t have pain. If your pain is constant and persistant then it may be a different type of head pain. This may not change your treatment as that is often the same across these types of head pain. But if you have a diagnosis you might find another treatment available or research trials.

Also if your pain started without any obvious cause or reason you may want to ask for a proper diagnosis, i.e. blood tests and referral to specialist. Though you may find the doc wants you to wait a bit longer before referral. Two weeks of pain means its difficult to pick up on any patterns to help with diagnosis.

[pieinthesky27]

Hi. Oh well - seems a good thing I am avoiding carbamazepine so far (in the cupboard) as I feared the side effects you state. Pressure point massage seems to take pain away before it digs in and gets severe again. Thanks for your comments and I hope you fine long periods free of pain.....

[Joopaloop]

For over a year I was suffering with this horrendous pain in my jaw/face/eye/neck, whole head basically, both sides would hurt but at alternating times. Dentist said everything was fine. Doc prescribed carbamazepine for trigeminal neuralgia, but they didn’t help. Nothing helped with the pain apart from dispersible aspirin and hot flannels on my face. Anyway I finally went back to the dentist and it turns out she had missed the fact that my both my wisdom teeth were very high up inside my cheek, they had been slowly rotting away for a whole year, causing me to suffer in the worst pain I’ve ever had. Are your sure its defo not your teeth? I also looked up tender point massage, however it made my pain worse 😕but it might help you 🙃

[pieinthesky27]

Thanks - yes will insist on an another investigation by dentist - she was very quick to dismiss any problem. Not wisdom - lost them years ago! Take care.

[tweenus]

Hi, I have had Neuralgia for 15years and it was a dentist who diagnosed it for which I shall forever be grateful.. I didn't have the luxury of only having this for two weeks, I had it all day and every day for months - I would have cheerfully put my head through a brick wall nothing I tried worked aspirin and the likes and I have only just found out that co-codamol helps. Thank you dentist, he put me on Tegretol and I have been on them ever since. I have been put on a few others but they did not work. Thank you Tegretol (15 years) and two weeks I wish, take the pills before it really hurts and anyone who has Neuralgia will tell you it HURTS. Neuralgia is known as the suicide complaint. I hope you will do your self a favour,, forget your dislike of pills, if you have Trigeminal Neuralgia take the pills (Tegretol)

Regards Tweenus

[Racing]

The worst pain ever . If anyone had this pain they wouldn't hesitate to take the gp prescribed medication All I will say is thanks to tegretol and pregablin it helps me. I have been a sufferer for 30yrs