Trigeminal Neuralgia wtf?!

[Constantsarechanging]

seriously it was just a headache... Or so I thought.

GP has diagnosed this (35 years old). Given tegretol 100mg. the GP was pretty blasie - here's an NHS website print out and a prescription.. bye.

Does anyone have experience with this condition or drug?! Is this forever?

I did a quick search and found a few old posts on here but wondering if there's still folks here who can advise..

I was diagnosed with this some years ago, given Tegretol and told to look it up on the internet and titrate my dose myself! I couldn't get on with the drug. Couldn't find a dose that killed the pain but enabled me to stay awake and then discovered it was toothache anyway!

@24NaToth thanks, I'm going to try see a dentist before I accept this as the new reality.. it sounds crap!

Glad your pain was resolved

Maybe ask about your pain team at your nearest acute hospital. I m sure I’ve read somewhere about having a nerve block done for unresolving pain associated with this condition.

This destroyed about a year of my life. I don't even really like to talk about it as I feel like I will somehow put the scud on myself and it will come back. Had the tegratol, tramadol, 30/500 Co codamols, even injections of tramadol. Countless visits to the dentist begging them to take all my teeth out. It just came from nowhere one day. Couldn't drive, look after the kids anything. When it was there I was screaming in agony. When it wasn't there I was sitting terrified to do anything that might set it off. The kids were so frightened and worried. Had an mri of the brain too as sometimes surgery is an option. It's not called the suicide disease for nothing. Death seems like a light relief compared to the pain. I used to slam a door on my foot when I had an attack to try and direct the pain away from my face. I wouldn't wish it on my worst enemy. There is a good support group on Facebook. Funny dh and I were just saying the other day how we wish we could just wipe that year from our memory. Good luck.

Sorry to hear of the difficult time you've had with this @ButiLoveHim32 and thanks for the suggestion @Powerplant..

The internet seems to suggest that the slightest touch is agonising but I find that pressure where my pain comes from helps.. I may be grasping as straws but to any sufferers would you have been able to hold pressure/massage your pain while in flair?

I have trigeminal neuralgia caused by a tumor. Tegretol did nothing for me, I was on a high dose combination of morphine and tramadol until my surgery, since then I've been on co-codamol and morphine when I really need it. Sorry you're experiencing this, it really is awful. For me it is forever - not for everyone - could you ask to see a neurologist? They were best regarding pain management for me.

I couldn't see, eat or even pick my head up when mine was at its worst. Certainly no touching/pressure.

My mum had this, it lasted for 5 years.

Thanks for replies, it seems like this is a terrible diagnoses.. sympathies to everyone who suffers it.

I'm seeing the dentist later on never thought I'd say this fingers crossed it's a cracked tooth or root treatment!

Constant- Good luck, hope it’s a dental problem not trigeminal.

Not dental.. but not convinced it's TN either as pain killers DO take the edge off and massaging my temples helps.. I'm going to get a second GP opinion..

I've got one. The worst pain ever, took years of my life to get it under control. Now 7 years later I just get the odd split second pain a few times a week- it's bearable. I have been offered surgery but it doesn't really affect me now as the pain goes so quickly, I don't want to mess with it and possibly make things worse.

Cold wind sets mine off as well, so I tend to wear buffs for dog walking and a huge scarf pulled up to my eyes, and the thickish hat I can find. Seems to work well.

Do you grind your teeth OP? Only asking because my dentist commented for years that I must clench /grind my teeth at night. Over the last 18months I started having bad headaches which sometimes wake me up at night, and the pain was across my cheek, temples and up to the right side/top of my head. Massaging does help.
Gp was all for diagnosing TN until I mentioned the jaw clenching. Went to dentist and was fitted with a mouth guard to wear at night, which has made a huge difference.
I have started monthly sports massage and therapist said my neck and upper back are really tight and no wonder I was getting the pain.
Paracetamol doesn't do much but voltarol gel on my neck takes the edge off.
I hope you get to the bottom of it and my sympathy to all TN sufferers as it sounds awful!

I would opt for a second opinion too...if painkillers are helping it isn't TM.

I was initially diagnosed with the same thing, and after several different drug trials, MRI and neurological tests I was diagnosed with chronic daily migraine.

It took just over a year to get to the point of no pain - my medication is amitriptylene.

Good luck op

@Trialanderror46 I do clench and have a tooth guard when sleeping.. I thought it could be related, maybe I just need a new guard it is quite worn..

@wineandsunshine I have a history of cluster, tension headaches/migraine it could just be a progression of that...

I'll take any option that isn't a daily medication for life. The edge gets taken off with OTC pain killers but I can still feel the pulsing in my temple and tightness in my jaw.. I'm only without pain for 2hrs at a time (medicated) .. I've had this pain now for 12 days solid

Did you have any previous medication for them?

I had similar but in the opposite side of my head. I did use amitriptylene then too but it was a lower dose than what I'm on now.

I already take Propranolol @wineandsunshine

Constants, how long have you had the guard? I've had mine 6 months and am getting the odd head pain again when I wake, though not the awful pain that I was getting before. I was wondering how long the guard would last and if I'm wearing it away.
Second opinion is a good plan.

@Trialanderror46 like 3 years or so.. I take it to dental appointments and they have always said its still fine - looks like a disaster though.

If it is definitely TGN then try with the tegretol but be prepared to ask for a referral to a specialist (although which one can be a bit of a game).

My DF had a progressively hideous time with TGN and management was best done by a team with a neurologist, facial-maxillary specialist and the pain management team. In extreme cases the nerve can be severed but in most cases drug treatment does seem to help based on what we could find out at the time.

That said if you are a sleep grinder there is still a good change its something muscular/related to the grinding which is resolvable. Good luck!

@Countrysidelife did you go down the medication route?

Are you sure it is trigeminal neuralgia? Have a read up on the symptoms of temporal (giant cell) arteritis. I dont want to alarm you, its only because you mentioned pulsing in your temples. I think it would be best to go back to your gp and ask fir this to be ruled out.

TN definitely can be managed with pain killers, albeit strong ones, so don't write it off due to that. The pain can vary for different people in regards to triggers and when and where it hurts, so similarly you being able to touch your temples isn't really that indicative. 100% ask for a neurologist referral and push for it too. My TN went undiagnosed (tumor was not the cause of my pain, according to my neurosurgeon ) for 2 years until the neurologist saw me.

@itsasmallworldafterall I mentioned this during my appointment as it had been mentioned previously for a similar pain (years ago) but apparently being under 65 rules that out..

Thanks @MummytoCSJH I'm going to try get back in to see a different Dr tomorrow and if they still think it's the right diagnoses I will definitely push for a referral - the severity wasn't expressed when I was handed a prescription and an internet print out!

Really appreciate all the advice, thanks everyone.