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!

Brushing your teeth? Warm water and brush all your other teeth first then the one which is your trigger last (mine is lower right last 2 teeth).

Drinks can’t be cold. Use straws if it might be cold. I remember being in a restaurant and asking for a straw and no ice with my fizzy drink. The waiter said they didn’t have any more because they are bad for the environment. I told him I had nerve damage in my face and I couldn’t drink it and felt embarrassed that I had to explain that to a complete stranger. He was mortified and went to another pub to get a straw for me!!

Wind is a big trigger. I wear a scarf a lot to protect my face. Air conditioning is also a problem. I find a seat where there isn’t any. Don’t put it on in the car either

Eating hurts. I have one meal a day and force it down when it hurts. Most likely can do.

I’ve not eaten ice cream In years...

Showers (the steam) can painful so I shower and brush teeth at the same time. It will hurt doing both so might as well do them at the same time.

As I said before, finding your triggers help so you can be prepared. Unfortunately trigeminal neuralgia affects every aspect of every day life.

Luckily it goes into remission so in a few weeks time the pain may disappear for weeks months or years.

You can do this

I had this for 12 years. There is some hope it may go away for you as it has done for me. When the menopause started the pains seemed to lessen now I get twinges but no flare ups, it's been 4 years since the last severe bout of pain.

I had no idea how life changing bit could be?! I think in my head when the GP told me I was like ok, some tablets few days it'll be fine and then I looked into it
Feel like I've been a crap Mum mostly crying all weekend in pain, must be doing DH head in. Things are so hard enough aren't they right now? Sorry having a proper feeling sorry for myself half hour! Having a (non alcoholic) glass of wine and going to watch a film had a good couple of hours...touch wood.
I'll find the meds and pain killers that'll work eventually. I guess it's not just a quick fox like..well getting a tooth pulled is it?
Thanks all for replying and for the Facebook group that was mentioned too.

It's not a pity party, OP. My pain is felt in my teeth, on my skin, in my jaw, sometimes on my tongue.

I've had mine for years now. It can relapse and remit but I've never had a day of remission, whereas my friend has been in remission for years and has had a few attacks but doesn't take medication. I've never had such a miserable time as it was until I reached a dose of a medication that I could take and that gave me good levels of pain relief.
It took weeks and weeks, raising my dose slowly every 10 days or so. And I kept a pain diary too, to keep track.
I got low relief from carbamazepine. Hit hard by side effects at 200mg,
Was told to let it leave my system for 2 days before I could swap to gabapentin - worst 2 days of my entire life. I can pinpoint when it left my system and when the gabapentin hit my system as it was a 2 day constant attack of pain. Even breathing set off pain! It's not to be underestimated at the amunt of impact it can have on your life. When I finally got up to 600mg x 3 I stopped having most of my pain.

Occasionally, I still get breakthrough pain. Very cold days trigger it. And if I get a scratch or a spot on my face, that triggers it. And exercise gives me the feeling of a very intense ice cold feeling on my cheek.

On top of everything else, I had to stop my contraception pill as carbamazepine can stop it working. The gp told me it was fine, I wouldn't have this for long. When I started the gaba I could go back on the pill, which was a relief. You can also drink alcohol on it, but with restraint as it hightens the effect of alcohol - but I was always a lightweight anyway.

My husband has had this twice - on both the left and right side of his face. He had MVD ( micro vascular decompression surgery ) on both occasions and is now pain free. He still has annual check-ups at the hospital and the doctor he sees keeps telling him that there are other, newer, different forms of surgery being developed for trigeminal neuralgia. He kept a table of when the pain occurred, how long for and a scale of 1 to 10 of the pain (10 being really painful). Change in wind direction also caused it to worsen. There is also a Trigeminal Neuralgia Association which provides support and advice too. (www.tna.org.uk/). The other and most important suggestion from my husband (although it will be difficult at present) is to find out where your nearest dental hospital is and arrange a referral through either your doctor or dentist. My husband visted the dentist four times in one year and finally the dentist referred him to the local Oral and Maxillofacial clinic (which was local where we live). The other key point is not to take big doses of Carbazmepane. My husband was on the highest dose and was really concerned that his organs would suffer greatly, which coupled with the medication not preventing exceptional spasms of pain meant that MVD was his only option. He also said that it was like suffering a mental illness and is so glad at present that he is not suffering at present.

I've had it but no idea why as it went again.I went through all the dentistry checks too.
The pain is indescribable and that it is only in one half of your face is wierd.The worst bit was when I didn't have pain I had a feeling like lots of wriggling insects in my cheek inside my mouth.
I hope you find something that works for you.

If you do get a referral from your GP, I'd recommend a neurologist or a neurosurgeon - might be a neurologist in the first instance.

Do try raising the meds and stick with it for a few days, it takes a while to build up in your bloodstream - once you find a level that works, stick with it for a while! Hope you are doing OK, OP

Definitely ask for a referral if they will give you one. It was really good to have a 2nd opinion to confirm the diagnosis. I also had an MRI and a lumbar puncture (ouch) to rule out certain conditions. I was referred to Prof Eldridge to discuss surgery, but as I'm lucky that the meds work, I'm not a candidate for it. Phew. Someone I knew had to have his first one cancelled half way through as his heart stopped (briefly) and then when it was done the second time, he got menigitis after the op.

Thanks for everyone who has taken the time to reply. I am finding it all so usedul.

I find I am sleeping well and my attacks start from about 10.30 to 5.30 in waves...always around the eye and wisdom tooth area of my jaw which is why I'm so programmed until thinking it's dental (still) although I'm guessing big it was dental I wouldn'tt be sleeping well?!
No where near as bad as Saturday so I'm taking that as a win for today, I've increased my meds to X2 this morning and my face feels numb on the right? Is that normal? I am so so grateful that the electric shock feeling has stopped more than anything!!

I am going to call Dr and ask to discuss a referral and blood tests. I know we're in the midst of a pandemic but stil, other illnesses are continuing as normal!

One test is this...
Take ibuprofen or paracetamol. If they dim the pain then it might be dental.
If it has no effect then it is nerve pain and you can stop worrying about your tooth.
Electric shock is classic TN though.

DrMadelineMaxwell thankyou! Although I don't think I've hope in hell of seeing a dentist unless my jaw was hanging off at the moment.🙄
Paracetamol and ibuprofen have mostly done nothing, I think it's because I can't see a dentist I'm focusing on that so much...
Ive had abscesses and toothache in the past and honest to go nothing was like what I experienced Saturday.
Although knowing my luck I've probably got both during a blooming lockdown ,🙄
That sounds like another pity party I promise I'm not today!

That's not actually true. Ibuprofen can relieve some of the pain. Not the nerve pain itself but that constant ache from having all your muscles tense and waiting for the next zap. It helps that. One way to see if you have an abscess is to run your finger around your gums and feel for swelling and tender or hot spots.

Definitely no tenderness or red or swelling gums, a bit of sensitivity on one tooth I'd say but I know deep down that would not have caused the pain I had on Saturday.
I think I'm probably looking for it to be anything other than this

Thanks everyone. Hope everyone has a pain free flare up free Eater weekend. ...tell me chocolate isn't a trigger please! Might even try a glass of wine too...

It's a common symptom of B12d (pernicious anaemia)
Make sure you get a blood test for B12, folate, ferritin. fbc and full thyroid panel.
Don't take any supplement containing B12 in the 4m before the test. This includes multivits and energy drinks.

My DM had this and GP fobbed her off for ages giving her all sorts of weird creams for random diagnosis. I looked up her symptoms and hey tied in exactly with TGN and made her go back to the GP and get a referral to a neurologist. She saw the neurologist who sent her for an MRI which came back clear but he gave her some medication which seemed to work.

My mil had a brain op in 1995 at the London hospital! She was in terrible pain years before this. She had to take strong painkillers. She recovered , but it took her years and she was also aggro phobic so that didn't help matters.

It's really common to mistakenly put the pain down to dental issues OP.

The tooth mine is currently centering around doesn't even have a nerve. Its had a root canal and crown and not heard a peep from it in years. Plus, dental pain doesn't just up and bloody vanish randomly then come back. Can you tell I'm getting annoyed with it now, I just want it to quit. I'm into the third week now, surely it can't keep this shit up much longer?

nothingcanhurtmewithmyeyesshut Oh I'm so sorry three weeks is just, well shit isn't it. I hope it doesn't last any longer for you. It's just the worst pain I've ever known

It's an arse. I cant lie down either. Even my pillow triggers it.

How are you doing @TheWalkingTalkingRed and @nothingcanhurtmewithmyeyesshut?

Hope you are both feeling better and the pain has gone into remission for the time being (or hopefully forever)

I have this too, started just over three years ago. I thought it was my teeth too and when I went to the dentist he said which tooth hurts and I couldn't really say as it hurt everywhere.
I'm fortunate in that my episodes last about 3 weeks and I've only had four in the last three years. One of those was very mild compared to the others. I'm also lucky that carbamazepine works for me really well and on a fairly low dose. I was reluctant to take it at first but then you get to the point where you'll take anything offered to you! Drafts and the cold aggravate mine and heat really helps. I bought some of those little microwaveable heat pad things as they are easier to hold against your face. The carbamazepine does make me feel a bit out of it which I don't like but the alternative is a lot worse. Hope you get some relief soon.

Hello! Thanks for asking and sorry to hear from another sufferer! Well I had a bit of a flare up Wednesday after a few really good days, it was after some pretty serious chewing on an overcooked sausage roll 🙄 it didn't last particularly long, I took my meds and some pain relief but I just found it put me on edge and made me pretty miserable to be around for the rest of the day/night. Like I'm just waiting for the next flare up. and look into every single twinge.
Spoke to GP again yesterday for repeat prescription and sticking with the carbempazine. It will be two weeks Sat since my really bad flare up.
I'm finding that with lockdown and now this it's making me feel a bit low some days, not like me really I am naturally a bit anxious but not low. I need to snap out of it as I've teen DD here and things are hard enough for her right now without having me being miserable.

Thanks for asking

Can I please ask do you take the carbempazine all the time? Even if you're not having attacks? GP yesterday said I'll be weaned off them but I don't know how I'll know when that will be? Sorry if that's a stupid question.

Take it all the time for now, don't stop or reduce the dose if it's working.

Some people get respite from TN attacks, some don't. When the meds have been working well for a while and you don't seem to be getting any attacks, it might be worth reducing the meds to see if it is a respite or just the meds working!

It's quite normal to be nervous about the next attack