Trigeminal Neuralgia

[Redflowers8]

Hi wondering if there is anyone out there who has experienced Trigeminal Neuralgia at some point or recently? I was diagnosed last Summer after the standard trips back and forth to the dentists.i am currently experiencing an extended flare and taking 800mg of cardamazapine. My GP isn't sure if I can combine with another med and I'm looking for a recommended specialist - any reach out would be great right now 😩😪 on day 9 of relentless agony x

Your gp should be able to contact a pain specialist or neurologist to get advice on combination meds. Most depts will have an on call consultant, and referrals will likely still be being triaged. Some hospitals have a pain specialist team who can give advice if the consultant isn't available. Most trusts have now gone digital so much of your history should be available to the team without having to pull notes out of storage etc. I have no idea about private care, but some private consultants can require a gp referral, regardless of the fact it's a private consultation. Have as comprehensive a list of meds and history as you possibly can. I don't know how much access a private consultant will have to NHS systems, so the doc will likely be heavily reliant on what you say initially. I hope you get relief soon.

Thank you going to take this info with me for my doc appt or call as it stands at the moment! He has now changed the way I take my pills so hoping that is going to make a change otherwise I have to start knocking on pain clinic doors really really soon!!

Ahh I feel your pain! Iv suffered with this on and off since I had a filling done went back to the dentist 5 times didn’t know what it was! He said there was nothing wrong which made me feel like an idiot. Finally went to the doctors nearly crying from the pain and was diagnosed. Prescribed the same as you. Havnt actually taken the tablets because the side effects scares me more than the pain. It’s wore off for now I think the last time it flared up was 2 months ago but I just try ibruprofen and a warm heat pack on the area. It doesn’t fully get rid of the pain but helps to ease it. Sorry I can’t be of more help hope you can get someone to help you x

Hello Iknowhowyoufeel so hard to find anyone who has been diagnosed with TN you seem to be managing without meds! That's amazing - I've had a few flare ups and each time they have been worse. I'm now on a high dose of carbamazepine 1200mg and I hate the thought but the pain is too bad.😪

Hi Op, sorry to hear you must be in agony. My Ddad suffered with TG for years on & off after having a tooth out. Went bk & forth to the dr/dentist. He was referred to a dental doctor (not sure that’s their proper title) who specialises in TG, she was saw him at his absolute worst. His attacks were becoming more frequent. He couldn't talk, eat, brush he’s teeth.
He had 2 options a trial drug (his bp was too low to start) or a brain surgery it was high risk obviously, but he had no other option he was on Gabapentin max dose but it wasn’t touching it.
He had the surgery 7 years ago now & has the odd slight twinge but that’s all. Before having the surgery there was only about 20 people in the U.K. to had under gone the procedure. It’s literally changed his life! They basically wrap Teflon round the nerve to stop them sticking together!! He was told after the op it can only have it done once. The trial drug he never started may be available now. I’d definitely push to see a specialist through your Dentist! Good luck!

Sorry TN not TG!!

My darling Mum had TN and it really knocked her for six. She was prescribed gabapentin and it really helped the pain but made her very drowsy.

Yes I have it. No real advice but it is a terrible illness. I'm pregnant so I can't take any meds but haven't had a flare in 6 months. I have about 3/4 a year lasting a few days usually. There is a Facebook group and an association that are a great support.

I'm on day 10 of this flare up and using Carbamazepine. Doctor has just changed the way I take these plus upped my dosage I'm now one step away from max dose! Feeling very drowsy and suffering from crushing headaches which is a side effect. I don't want to take any more pills I will be pushing my gp to refer me to see a specialist for some type of surgery. @Redears3 very interested where your Dad had his surgery? @lockdownlowdown I pray you stay pain free throughout your pregnancy x

@pigdogridesagain my post re TN. Do you take anything else other than Carbamazepine?

Redflowers what are your specific questions? My husband is a neurologist. Of course you still need to see a neurologist in person but he may be able to point you in the right direction or suggest some medication combinations that you could discuss with your doctor. Did you ever have an examination by a neurologist?

Definitely join the UK TN Facebook group, there's loads of good advice there (I was misdiagnosed with it a few years ago).

@Redflowers8 he had his surgery in London, we live in SE London. It was at the National neurological hospital. I can’t remember the timeline now but he saw a Swiss lady (the specialist) in Grays Inn Road, London. Had MRIs for diagnosis, weirdly enough the discoverer he had it on both sides of his brain!! But it was only triggered on one side after the tooth removal. He tried Carbmazine too but it ended up with a rash! Where abouts are you Op?

Have a look at the TNA-UK website as well, and they can help you with a specialist in your area. I'm guessing that Joanna Z was the specialist at the dental hospital?

I had surgery years ago that was successful (it's not for everyone though) and before that I took a combination of three meds to treat it. I hope you find something to ease the pain soon, it is horrendous!

P.S. I am on the West Coast of the USA and it is almost midnight here, so I won't be checking back for 7 + hours, that would be the only reason for no response!

Hi OP, here's a recent thread about this:

www.mumsnet.com/Talk/_chat/3871741-Any-Trigeminal-neuralgia-sufferers-out-there

@ChicCroissant yes that name sounds familiar.

That link was really helpful thank you

My main question is can I mix Carbamazepine (tegretol) with another med currently taking 600mg x 2 and how long does carbamazepine take to become effective my flare up is now 11 days long 😳

Were you not taking the carbamazepine before the start of this flare up?

I have to take my TN meds daily, and have done for 5 years plus. I lower my dose but after a few days my pain breaks through again. I talked to the doctor about it, knowing that the course of TN can be described as relapsing and remitting so I asked how long I should carry on taking the tablets if I was not getting any pain and his reply was 'Oh, for a looong time' as it usually comes back.

I hated tegretol and it didn't give me good pain relief, but did give me horrendous side effects.

So I swapped to gabapentin, which seems much better for me.

Hi @DrMadelineMaxwell

I've only been diagnosed just over a year and for the most part I have had quick short Sharp shock type attacks that don't last for more than a couple of days. My doc said I should cut down once I felt safe enough so of course I cut down till I cut out and have been pain free till now and now I have been in pain for 12 days long! Is there any other Carbamazepine apart from tegretol?

No. Tegretol is just the brand name, or you can be prescribed generic carbamazepine.

It is the front line recommended first med to be prescribed but my neurologist says a lot of people don't tolerate it well, which I didn't.
You can be prescribed gabapentin or pregablin which are other anti epileptic drugs. Or certain anti depressants like amytriptiline.

I've got TN unfortunately, I'm also on 800mg of carbamazepine, 600mg gabapentin I was on amitriptyline 25mg but they completely knock me out.

Hi my mum had this and was crying with the pain we all felt so helpless and went to a private consultant who recommended acupuncture (stipulated had to be a good one ) this helped and she has been symptom free for ages