Trigeminal Neuralgia pain

[moyramm]

After many years of suffering with facial neuralgia. I have finally got a diagnosis of Trigeminal Neuralgia (TN). For me this means constant facial pain (migraine earache and toothache all at the same time ) I am told this is a very rare health condition . Are there any other members on the forum that have this condition ? Surgery has been suggested as an option but this is a big thing to think about as it's classed as brain surgery Has anyone has successful Mirco- vascular decompression (MVD ) surgery ? I am just trying to get as much information as I can before I make a decision about the surgery

[Hidden]

Hello I have had this many years I get a repreve in summer I control it by drinking warm not hot or cold drinks, don't have food too hot or cold either,yes it's like toothache sometimes pretty unbearable in really cold weather, I also have drank with a straw I don't have anything very chewy or nuts I have sensitive gums too not just the Trigiminal nerve, I take cocodomol if really bad slight relief or sometimes resort to couple glasses wine to relax it, I wear scarfe over mouth if cold breeze, I heard you can risk paralysis of the face with the surgery, I'd love to live abroad in warm weather all year round. No one really understands as you say it's rare, I lost lots teeth on the left side when younger as constantly at dentist doctor just said go to dentist, it was a clever dentist suspected said why you lost those teeth on the left and couldn't see any bad tooth, sent me for tests, hope you make the right decision and find way to ease things do you do the same things as me 🤗

[NanaJay123 in reply to Hidden]

Hi. My husband had trigeminal neuralgia for 20 years. It was under control with tegretal and he used to go unto remission for a while. It started to get worse and nothing helped. He decided to have the operation MVD when he turned 70. That was 7 years ago. He had a brilliant neuro surgeon and hasn't had any more pain. It was a big decision, but he was in so much pain. It's is called the suicide disease. Good luck to you. Has your doctor tried you on Tegretal?

[Hidden in reply to NanaJay123]

Oh it was many years ago the meds made me drowsy and couldn't concentrate I can't remember name of meds as you say it goes in remisshion I get by but these colder winters at time it is pretty unbearable I stopped drinking alcohol 3 times 3 months periods but winter came and I started for pain relief I'm ok during day I keep busy and I avoid noise it all kinda adds to the head pain stress, they say it gets worse with age I'm 6o this year, I regret loosing the teeth also i do look but older on one side of face, I have weight too and tryner build it back I recently had ulcerative colitis flare been in remisshion ten years, so the diet is helpful for that too, I'll read up on the latest treatments thanks 😊

[moyramm in reply to Hidden]

Hello TwinklySunflower Yes the medication made me very drowsy too They tried nerve blocks , acupuncture and other things that haven't worked Like you I am busy during the day so can concentrate on other things and ignore the pain but night time is harder to relax like you say avoiding certain foods and other triggers does help

[moyramm in reply to NanaJay123]

Hello NannaJay123 Yes I have tried different medications and they all make me drowsy and I as I am a 24/7 carer for my hubby I need to be alert Nerve blocks didn't work and up to now everything I have tried just does not work So I think this is why they have suggested surgery

[lupus_01]

Get the surgery done. It pretty much saved my husband's life. Before surgery he took tegretol and was still getting attacks. Some so bad his body went into shock. He didn't want to go out or socialise, he was very depressed and borderline suicidal. He had the operation, which I know sounds really scary. He was in hospital four days. Initially he was sensitive to loud noises but that improved quickly. He has a tiny scar behind his ear now and has never had another attack. Surgery was 13 years ago.

[moyramm in reply to lupus_01]

Hello Lupus 01 Yes I am seriously considering the surgery but it's such a big step to take and such a lot to consider as I am nearly 80 and do have other health problems

[Smilesalot]

Hi sweetie my old carer had that.He had some sort of mesh put in his nerve.

He was fine after that. It was many years ago tho so I imagine treatment has changed.

I'm so sorry you have this.

I had 4 teeth out in the early 2000 s as the thought I had neuralgia.

I no longer keep in touch with him so don't know if it stayed fixed.

Good luck with what you decide sweetie Dawn hugs 🤗🤗🤗

[moyramm in reply to Smilesalot]

Hello Smilesalot Thank you for your message I have had all my teeth out and also tried medication and nerve blocks but nothing has worked so this is why they are suggesting surgery but it's a big step to take

[Smilesalot in reply to moyramm]

Oh poor you sweetie! !I have 2 teeth and dentures.

I hope ur ok today?

Probably not😢

Knowledge for you is vital. What have the specialist said ?

My old carer was happy with his outcome.

I hope you manage some pain free time ?

🤗🤗🤗🤗🤗🤗hugs sweetie Dawn🤗🤗🤗🤗🤗🤗

[moyramm in reply to Smilesalot]

Hi Dawn I have only seen the neurology people up to now and am waiting to see the consultant To be truful it was such a shock to be told they thought surgery could be an option after all the years of being told they couldn't see anything wrong I am OK today thanks I care for my husband so need to be ok even if I don't really feel OK Hope you are ok too as its a hard health condition to cope with Big hugs to you x

[Smilesalot in reply to moyramm]

Hi sweetie 😀,I've read a bit about Trigeminal Neuralgia now and I understand ur hesitancy eep !!

I didn't remember how serious a Syndrome it was and is.

My Physio has just discharged me🙄. Good job I do my exercises. I guess I go private from here typical as the private physiotherapist gets things done. I'm hoping to get a steroid injection in my hip at some point this year. Even if I have to save up the money.

I've just had some morphine - bad day. Now I want to be sick.

How are your pain levels sweetie?

Mine are about 7-8. That's the Fibro.

I remember my ex carer saying TN was the worst pain known to man?

Ok sorry I have waffled at you😕

Hope you sleep well hugs 🤗🤗🤗🤗🤗Dawn

[moyramm in reply to Smilesalot]

Hi Dawn so sorry that you are having a bad day yes it's a horrid pain to have to deal with and you having Fibro can't be easy for you as that can be very painful too Do you have Thyroid issues too as lots of patients that have Fibro do have both I dont have Fibro but i have bad Oestoarthritis and gastritis both of which can be painful ehen they flare ul Yes any time I have had to have morphine it's made me feel sick too my pain is 6/7 at the moment but was worse this morning when I got up thankfully it's eased off a bit. I hope you find a nice private physio that can help with your pain big hugs to you x Moyra

[Smilesalot in reply to moyramm]

6-7! That's not good sweetie😢.I'm the other way round. I wake in pain then it eases till lunch time. Then it goes down hill from then. Also I've been sleepy all day .

I don't think I've thyroid problems except being too far lol.

I also have Osteoarthritis in my right hip.

The x rays showed it on both.

So you have Trigeminal Neuralgia and osteoarthritis ouch😭🤕 poor you. You sure know all about pain which saddens me oh and tummy problems!

I'll pray for you sweetie hugs 🤗🤗🤗🤗🤗Dawn 🤗🤗🤗

[moyramm in reply to Smilesalot]

I don't think that when we have pain like we do we don't get a good quality of sleep So we are tired during the day I often dose off for half an hour or so (my granny nap ) I call it Oestoarthritis can be very painful so you must have some bad days with the pain of the Oestoarthritis and the Fibro My x-rays showed Oestoarthritis all over my body but the pain moves around with some areas more painful than others then other days it's not too bad Hope you soon feel a bit better Big big hugs to you xx Moyra

[cyberbarn]

It is surprising that they think Trigeminal Neuralgia because I know personally two people with it. But both of them were told they had nothing wrong with them to start, it was all psychological. And both are women.

So it might be another one of these conditions where it isn't rare, it is just rarely diagnosed.

[moyramm in reply to cyberbarn]

Hello Cyberbarn Thank you for your reply Yes I agree I have had this problem from when I was 21 (now 79) At first it was just random pain that came and went and didn't last very long and was manageable then over the years this has become worse and is now at the stage of constant pain every day. For all these years just like your friends I have been told its all in my head and there's nothing wrong etc Then 3 months ago I had another MRI scan done I was never more surprised in my life to be told after the scan that this was trigeminal Neuralgia and they were suggesting surgery I have tried medication and nerve blocks but nothing has worked so I think that's why surgery has been suggested but it's a big step to take

[NanaJay123 in reply to moyramm]

Not sure where you live but in Australia the cut off age for the op is 70

[moyramm in reply to NanaJay123]

Hi again yes I am in the UK . If I am fit or still not too old for surgery is some of the things I need to sort out

[Smilesalot]

Hi moyramm,You've got me curious now so I'll be looking it up.

I truly hope everything works out for you whatever you decide.

Sorry for the bumsrush but I'm struggling to breathe today and I need a nap 😌lol.

Hugs sweetie Dawn 🤗🤗🤗🤗🤗🤗

[Jaff1]

I have the same condition. I was lucky in the sense that I was started on amitriptyline 10 mg. That kept me pain free for a few years. When it came back I was put on tegretal but had a reaction to it. I was put on pregabalin. Again I was pain free for a couple of years and it wasn't too high a dose although it clouded my mind. I'm now back on amitriptyline but 20mg daily and I've been pain free for a couple of years. I dread it coming back but, at least with the amitriptyline I don't get that mind fog. Hope this helps.