Any Trigeminal neuralgia sufferers out there?

[TheWalkingTalkingRed]

Sorry, I know I should have posted in General Health but thought they'd be more traffic on here!
Newly diagnosed and had never really heard of this until recently, I can honestly say I've never known a pain like it. I've suffered with acute sinusitis for years, and also saw a dentist regularly with tooth pain that turned out, well not to be tooth pain! Until finally seeing. GP recently who diagnosed me with this condition.

At its worst I would have done anything to take the pain away, and even now on meds that's I've just started, I'm in constant state of anxiety over another attack.
I've been online and it's got some scary stories on there...

Is their anyone else whose living with this condition? You have my sympathy for a start!

'Industrial quantities of ibuprofen can help'.
It's proven that it has no effect on nerve pain at all. So any relief is coincidental, or there's something else going on, like TMJ.

You may want, OP, to persue (when the CV pandemic has died down) a referal to neurology. I saw a neurologist who confirmed the diagnosis, gave secondary advice about my medication and how to increase it and what max dose to stop at - it's unlikely that your initial dose will be your maintenance dose, and be careful when you go up a doseage, that's when my unbearable side effects kicked in.

I was given blood tests and an MRI to rule out some causes like auti immune things or tumours, and it did spot the artery rubbing on the nerve. But because my meds work, they won't offer the (scary) operation.

I have it too. First type 1 or typical attack was 10 years ago now. Thought I was dying at first, then just wished I was. Had an absolutely amazing doctor who diagnosed me straight away. MRI showed nothing physical and I was told I was one of those people about whom they have no idea why it happens.
Carbamazepine started doing its thing pretty quickly but also tried the capsaicin creams and acupuncture. The acupuncture enabled me to reduce my medication to 25% of what it had been which was good as it had turned me into a zombie. Eventually weaned myself off the medication due to ever increasing side effects which are unfortunately permanent.

I also have type 2 or atypical TN and it's bilateral. Bit shit but I've adapted my life as best I can and at least I'm not in those first few weeks. Genuinely would have thrown myself off the balcony if I'd had to exist like that for much longer.

ChicCeossiant Hi there I'm on one 100 mg tablets of carbamazepine twice a day. I'm not sure if they've kicked in yet really as Although my flare ups weren't nearly as bad yesterday I've woken up, turned to husband and begged him to find someone to rip my tooth out as it honestly feels like that's where it's coming. But then the electric tingling comes in my lower teeth and the rest of my upper....not as bad as Saturdays attack which like a PP poster described having her face in a cushion! I felt a hot poker sticking me in the face!!

I've just rang our local GP practice, explained what happened over the weekend (saw them last week who originally diagnosed sinusitis) and have a call back later this morning with a view to hopefully see my regular GP they're usually very good so hoping I can.
Do I ask for a scan to see what's going on or will they offer it? And is there painkillers as well as the tablets I'm on? Although the tablets took away the electric shock feeling there was still a feeling of a horrible ache my jaw/temple

Sorry to bombard you...felt like it was like oh you have TN here's the tablets and some websites and that was it!

I need to try and pull myself together today for DD sake whose at home, I feel as if I've literally spent 3 days with my head in a cushion crying or crying waiting for another attack!

Actually maybe I won't push for anything right now the NHS is swamped enough as it is. I'll see what Dr suggests from when things calm down a bit after the pandemic. Will definitely explore other pain relief paracetamol and ibuprofen, codine and even co codamel did nothing especially during Saturday's attack. Might as well taken tic tacs

I had atypical trigeminal neuralgia for about ten years. Was fobbed off by drs and dentists repeatedly in that time. Eventually got an ENT appointment referral from a fantastic locum GP and a started gabapentin which worked quite well. Changed dentist and discovered a massive root abscess above one of my top front teeth, that she said may well have been coming and going for the entire time. I am sure this was what caused my facial pain. Once it was treated my pain subsided a lot and has now, after a few years, gone entirely. Although hormonal headaches can still give me similar facial pain occasionally, to the point I have to push my fringe back from my face as it hurts resting on my forehead.

You're on the initial dose at the moment. Usually, it takes a while to build up on your system and a lot of people need to go.up to 200mg about 3 or 4 times a day (you can check this on NICE guidelines).

Dont overload your system with extra painkillers. They really do not work. Normal painkillers not having an effect is one way to determine that it is nerve pain. Its horrible but you need to persevere with what you have and be patient even though it's hard.
Did they give you a blood test before prescribing the carbamazepine? It's hard on your liver and they should check your.liver health before prescribing and at regular intervals.

DrMadelineMaxwell Gosh that's worrying no they didn't! I haven't had a liver function or any kind of blood test for ages! I did see it can take a week to to kick in and assumed that was epilepsy not for this, I shouldn't have assumed really! Just off the phone to GP who agreed with diagnosis, and said I could up the doseage if needed. I mentioned having a scan further down the line, but now I don't want to bother her again asking for a bloodt test.

I haven't bothered taking anything today other than the prescription and am 40 minutes after teeth brushing and so far ..not too bad? Touches all the wood getting up and keeping busy today is going to be my plan. I've literally sat in bed two days just waiting for the next attack

Thanks for everyone's advice I am finding it really helpful and don't feel so alone. Hard to explain to DH and DD how much it hurts. They were so scared Saturday DH said it looked worse than when I was in labour. I was like it was!!!!

I was diagnosed at 27 years old when my daughter was 2 after 6 weeks of pain like I’ve never felt before coming and going every day for about 2 hours. The pain was triggered by eating, showering and brushing teeth. I lost a stone in that time (I was 7 and a half stone to begin with). Luckily my dr knew what it was and I was put on medication and referred to neurology.

Since that time I have developed both type 1 and type 2. The constant pain is my wisdom teeth and cheek. Specialist at hospital confirmed no dental problems. That recurs every 3 months after a windy day (or cold or any of the other triggers). I can function through that although struggle to eat. I can work to some degree but end up taking a few days off as I struggle more and more with the pain and fatigue.

I also have the electric shock pain in my eye area. That occurs about once a year but lasts about 6 weeks. The pain lasts about 2 hours and leaves me exhausted. It occurs every 12-24 hrs. Work because very challenging and I end up taking a lot of time off. My life is consumed with the pain and when it will happen next.

Out with these times I am a very happy and healthy thirty something with 2 children now (my son is adopted as I couldn’t conceive on the medication) and you wouldn’t know. In fact for years I didn’t tell anyone. It was only when we weee going through the adoption that it came up. The good thing about it is it goes into remission. No one knows why but it does. I have more pain free days then pain filled days and for that I’m grateful.

Good luck and please ask me anything. It’s a scary time learning how to cope with it but you will. You can do it

@TheWalkingTalkingRed - You wouldn't be 'bothering' them for a blood test. It's an important part of the treatment plan. In the early days I was tested every couple of weeks but eventually, after I'd come down in dosage (had been on 1200mg a day) and has been stable for a while, it dropped to every six months or so. You don't need liver problems as well...

Other painkillers won't work and tell anyone who tells you to just take paracetamol / ibuprofen (I had a doctor suggest this once) to, very politely, do one.

A scan is important to have. If you're under 40 it should be standard as far as I'm aware. It was when I was diagnosed.

I never had any blood tests either - I even asked my neurologist and still didn't get them!

100mg (200mg per day) is quite a small dose, so if you speak to the GP I would ask about raising it gradually. Tbh, once I was on 800mg (over the whole day, not per dose) I found I wasn't safe to drive. I took a combination of three meds to help with the pain! As PP have said, over-the-counter painkillers don't touch it as it's nerve pain, although you could try codeine.

There is also a more expensive slow-release version of tegretol (carbamazepine) which might be better if you find the nausea really bad - you still get it, but I found it better.

crivit I'm 42 I think I'll call the surgery back and leave a message with the receptionist to call me about this then as it hasn't been mentioned by either GP I've seen, and definitely dont want to add liver problems onto everything else! Thankyou

ChicCroissant Yes she said it was a low dose and to increase if needed it seemed manageable yesterday but who knows for future flare ups. I hate feeling nauseous so will see what doseage I can find manageable. Wow this condition is fun right? and no damn wine , I
know it's the second time I've mentioned wine but... homeschooling, moody teenager, pandemic, Mother who thinks she's invincible it's been quite a welcome evening treat!

121Sarah121 Thanks! Your triggers and pain sound very similar to mine! Glad your doing well now and that this condition can go into remission!

I have it and they never found a cause. I was diagnosed in 2000 and have only had around 3 flare us since then, possibly 4. So 3 or 4 in 20 years. Don’t take long term meds, only when flare ups so hopefully yours won’t flare too often

Also worth noting that this is not the only medication they can prescribe. I couldn't tolerate the raised dose of carbamazepine as it made me twitch and fall asleep uncontrollably as well as be unable to walk in a straight line. So they swapped me to gabapentin which is not liver toxic and I tolerate really well.

DrMadelineMaxwell That's really useful to know and I'll bear that in mind, the liver thing has scared me a bit, especiallythe GPs never mentioned having a liver test. And I'm clumsy enough as it is without me meds making me fall over! Thanks for all your advice x

I am on meds too but I think it’s important to know what triggers it although it is hard to avoid doing it.
I found that made me feel more in control. The condition is awful and not understood at all unless you have it. It’s good you’ve reached out for support. Keep reading and asking questions.

It is scary for people to witness because it's hard to believe that such intense pain can be caused by essentially nothing. There's nothing they can do for you, you don't need an ambulance or anything so they're just helpless.

121Sarah121. I had a good night's sleep last night no flare ups at all, woke up feeling really positive and then...brushed my teeth, had a coffee and oh my god on comes the pain in my upper jaw..almost like my wisdom tooth...feel so sore and tight...the electric tingling is definitely less though. Although my cheek feels numb.
I checked my gums to see if they feel tender or swollen JUST in case it was wisdom tooth..feels fine.
I'm guessing the tooth brushing is the trigger? But not sure how I can get around that one!
I woke up feeling so positive and now feeling really sorry for myself, I'm in absolute awe of those of you who have put up with this for years. Truly.

Sorry for the pity party

I've got it. Had an attack five years ago that went on for weeks, was in and out of the dentist and then eventually he suggested it was neurological. Also had a tooth out in the process. Went to the GP who prescribed Amitriptyline which I've been on since (50mgs a day) and is mostly under control. Still get occasional twinges but has never flared back up properly since. At the time had private healthcare insurance so got referred to a neurologist who did an MRI scan which didn't reveal anything. Still terrified of it flaring up again, as was literally the worst. Sending hugs to fellow sufferers as I know how horrible it is.

Run toothbrush and toothpaste under warm water before brushing. Temperature changes are a very common trigger.

Hi OP, there’s a very down to earth YouTuber called rawbeautykristie who has this disorder and has made videos about it. She mainly does beauty stuff but is very funny and open about the impact TGN has on her.

Thanks both! I like a YouTube watch so will definitely check her out! And nothingcanhurtwithmyeyesshut that is such a good idea thankyou!!

She refers to them as ‘cluster headaches’, just to help you search.

If you go out in cold weather, wrap a scarf round your lower face. Cold wind is really painful during a flare up.