Trigeminal Neuralgia

[misspopsicle]

I've recently been diagnosed with this but haven't had a scan or anything. I've been referred to neurology. The first 2 GPs I saw prescribed gabapentin. Then the 3rd took me off of that put me on carbamazepine. I'm allergic to that so she took me off that and gave me diflucan fit pain relief but nothing to cover me iyswim. I'm in extremely pain today so have decided to start the gabapentin today. I can't get a GP appt until 13th. I don't know what else to do. My cheek and teeth are really sore. I can barely shut my teeth together because of the pain. Does anyone have any experience with this? I'm supposed to be working tomorrow but just don't know if I'll be able to. I've got amitryptiline to help me sleep but it totally wiped me out the next day 😩

Oh you poor thing. Could you also take some normal painkillers such as paracetamol/codeine and ibuprofen? If you take the amitriptyline earlier in the evening you may feel less terrible tomorrow morning. You have my sympathies, neuropathic pain is terrible

By the way, I take vitamin B12 and I do think its helping.

B12, paracetamol, amitriptylene at a higher dose, a decent chiro - good luck op

Paracetamol and ibuprofen or even codeine will do nothing. They have no effect on nerve pain so are pointless. Carbamazepine is the first medication usually prescribed but I was also allergic to it. Nasty side effects. I'm on gabapentin. It took ages to build up to a dose that was effective for my pain but I've been on that dose for over 4 years now and it's doing a good enough job for me. PM me if you like.

I was signed off work (teacher) for several weeks due to the medications not being right and being in a lot of pain, so much that all I could do was put my head in a pillow and cry with each attack.

Acupuncture helped me with the pain a lot.

Thanks guys. I've ordered some vitamin b12! I was off work over Xmas with it so absolutely forcing myself to go in now :(

I think mind is atypical as its there constantly for days but I don't have the paroxysms of pain. It's such an awful thing. I've got yet another dr appt next week. Sick of the sight of the place!! So have you all had an MRI? I'm not sure what to expect from neurology at all.

I've had an MRI, but not really sure what the point was to be fair. I paid privately to see a neurologist while I was signed off from work, which cut down the 9 month waiting list to 2 days and I was able to see the neuro doc who I would then see on the NHS. He transferred me straight onto his list and sorted out an MRI, which I got as a cancellation appt. It did show an impingement of the artery on the nerve, the most likely cause of the pain. I saw Prof Eldridge at Walton who told me that, as the meds I'm on are mostly working with only a few side effects I can live with, they wouldn't be offering the MVD op that could fix it. So I have found the medication level that works and have just been on that for over 4 years.

You need to ask your GP about the medication, titrating it up to a level that manages the pain. I was on 3 x 100mg gabapentin a day, adding an extra 100 to the dose every week until I had relief.

They have no effect on nerve pain so are pointless

Actually, it's not quite as clear cut as that if you look at the Cochrane reviews, and there are trials at the moment looking at the role of paracetamol in neuropathic pain. All the best OP, really hope the B12 helps.

From the Cochrane review articles, "For chronic neuropathic pain an ongoing Cochrane review reveals a complete lack of any evidence for paracetamol at all."

Thanks! Been ok today. I could feel it starting when I was walking home from work so had to hold my face. Thinking of getting a balaclava!!

Got my neuro appt through today for mid-March so not too bad. I've got a gp appt for next week where I'm just going to say that I want the gabapentin. I can't not have anything, as the last dr said. Well, she prescribed diclofenac which seems to do nothing too!

For chronic neuropathic pain an ongoing Cochrane review reveals a complete lack of any evidence for paracetamol at all.

Your copy and paste above (from a blog article) is saying that evidence isnt available, which is a different thing from saying something is pointless.

From the Cochrane review specifically on neuropathic pain:
There is insufficient evidence to support or refute the suggestion that paracetamol alone, or in combination with codeine or dihydrocodeine, works in any neuropathic pain condition. It's the quality of the trials that is the issue, they are not of a level to provide evidence either way.

Anyway OP, at least things havent been too bad for you today, that's a positive. Mid-March isnt bad at all is it. Hope the gabapentin works for you - I found relatively few side effects other than forgetting words and memory deterioration. I began with 300mg 1x day, then upped very slowly to 900mg (300mg 3x a day) which is the minimum effective dose for most people. NICE guidance increases you from 300mg on day 1 to 900mg by day 3, but my GP advised increasing a bit more slowly. There's a bit more about it here: www.britishpainsociety.org/static/uploads/resources/files/FPM-Gabapentin_0.pdf

Am coming off it now (slowly again!) as high dose B12 is definitely helping. All the best.

My Nan has trigeminal neuralgia and she finds pregabalin (Lyrica) works best out of all she has tried over the years she's had it.
She has little to no symptoms on this. Hope it might be helpful for you

Amitryptaline side effects will become less over time too. The drugged up feeling in the morning will become less. I’d take it for longer see if you can tolerate it.

Have you tried a high dose of B12 and St Johns Wort???? I have Trigeminal Neuralgia - I have spent my life at the dentist over the last 12 - 18 months they have exhausted all the teeth tests and scans in the world. It the mean time it was suggested I up my B12 so I am taking a variety of minerals and vitamins and also St John Wort - it has already made an improvement. Yesterday was the first day for a very long time that I had no pain all day. I still am anxious for most of the day waiting for the pain to kick it. But I am telling myself I need to enjoy the pain free time while it last. Anxiety doesn't help with neuralgia so you just need to keep yourself relaxed.
Head/Neck massage you need to get blood flowing around your head, neck and shoulders

Hope you feel better soon

@iphigenia123 hi! How long should i give the amatriptyline? X

@wineandsunshine hi! How long should i give the amatriptyline? And im only on 10mg dr said i could go to 20mg? Xx

I know people say painkillers dont help but i have atypical TN and actualy for me codeine can take the edge off

B12 has helped a bit, working out my triggers has helped a lot (for me its 100% cold moving air, when it flares up i have other triggers like teeth brushing), but if i can avoid cold moving air e.g. by avoiding drafts, wearing a buff when out etc this helps massively. For other people pressure on face is a trigger so a buff would be bad, so its worth experimenting to work it out.

Are you anywhere near bristol? Dr Nik Patel is the best neurologist for TN and he is based in bristol. I am on a TN facebook group and know of a lot of people who have travelled to see him.

Also there is a TN society, they have a card/pamphlet you can print out. If it gets really bad you can go to AandE and the card tells the Drs what treatment is recommended (because A&E drs might not be TN specialists etc). They can give you an anasthetic in your cheek to stop the pain. But this is only if it gets so bad you arent eating and sleeping, because it will only give temporary respite and doesnt replace getting your meds right to control it.

Hey there lovely. I'm beginning to think I have tn. Can I ask the name of the fb group please. Also do you take medication and does it work. I've heard on one group I'm on to take a super high dose of b12 until pain free. Have you tried this?

I suffered from this for eight years. It was hell. I had terrible spasms all down one side of my head regularly. Nothing really worked apart from valium which my GP would only give me when I begged. I used to spend days lying with my head on a hot water bottle wincing. I was advised an MVD but then I got pregnant again. I gave up teaching after I had my last child and haven’t had an attack in three years until one of my children was ill abroad and I was very anxious. For me stress must be a major factor so I really suggest looking at your lifestyle and work. Easier said than done I know.

My lifestyle is healthy and I'm in a super easy job. I'm not stressed but have been in the past. Can you be referred to a dental hospital for help with this. I'm seeing a dentist and I've seen an endodontist and where do I go from here.

You need to visit www.tna.org.uk
They have a free helpline, both phone and email