Trigeminal Neuralgia

[TaketheCannoli]

Good morning.

Around six weeks ago I was diagnosed with Trigeminal Neuralgia. The pain never quits. First thing I sense when I wake up and last thing I’m aware of before I go to sleep.

I’m on medication from the GP which doesn’t seem to be making any difference at all.

Anyone had this? Any good treatments available?

Thank you.
https://patient.info/brain-nerves/tr...ralgia-leaflet

[RustyBin5]

I am not sure if it is still used but my father had this and was given carbamazepine under the trade name Tegretol. It worked very well but did cause slight nausea on occasion. What’s the cause of the trigrminal pain? In my father it was the degradation of the myelin protective sheath around the nerve (he has Multiple Sclerosis) and was the typical form of sudden sharp shock like pain. Yours sounds more like the ATYPICAL version in that it’s chronic rather than acute.

Any chronic symptoms can “wear you down” so be aware of your mental health also as it can lead to depression on occasion. Medication is available as I said above but also surgery is an option. It is possible to cut a section of the nerve which can lead to instant relief but can also leave you with a numb face and sagging (similar to stroke after effects).

I assume you have seen a doctor and been referred to a neurologist already. If not go do it. Good luck and let us know how you get on.

[TaketheCannoli]

Yes I’m on Tegretol at 600mg per day. I’ve been referred to a neurologist and am awaiting the appointment. At the moment I’ve got a loose diagnosis that it’s being caused by the nerve in some way.

Even after just six weeks it’s getting really debilitating and as I already suffer from anxiety I need to be very aware.

Thank you.

[RustyBin5]

Treatment is effective so it should be fine just follow instructions.

[TKH]

It is without doubt very painful and quite debilitating on a daily basis...

Cold weather triggered severe neuralgia for me - ended up on as others mentioned (tegretol) which the Dr said was for treating epilepsy....its dulled the pain but the side effects were feeling like you were underwater and everything was happening in slo-mo not much fun..

Heat works well so submerging yourself in a bath can make a difference...not always practical ...

I have bouts now again associated with cold but you get so that you can feel it coming on...I bought a heated kind of small towel blanket wrap it around your head like Quaid in Recall and the heat seems to sort it out....

no fun fingers crossed you get some relief from it..

[TaketheCannoli]

The Tegretol is making me moody and snappish as I feel sluggish and a bit spaced out, like I have to do everything at half-pace. Really annoying. Also if I have it on an empty stomach I feel very sick.

It is without doubt very painful and quite debilitating on a daily basis...

Cold weather triggered severe neuralgia for me - ended up on as others mentioned (tegretol) which the Dr said was for treating epilepsy....its dulled the pain but the side effects were feeling like you were underwater and everything was happening in slo-mo not much fun..

Heat works well so submerging yourself in a bath can make a difference...not always practical ...

I have bouts now again associated with cold but you get so that you can feel it coming on...I bought a heated kind of small towel blanket wrap it around your head like Quaid in Recall and the heat seems to sort it out....

no fun fingers crossed you get some relief from it..

[RustyBin5]

There are alternative medicines - ask your doctor to suggest one with less side effects

[TaketheCannoli]

Will do, thanks. He seemed to think this was the only medication though.

There are alternative medicines - ask your doctor to suggest one with less side effects

[RustyBin5]

Will do, thanks. He seemed to think this was the only medication though.

Ask your Doc about oxcarbazepine as an alternative.

[TaketheCannoli]

Update: I've had a GP consultation today and we've agreed to increase to 900mg a day (3x300) for a month. I found yesterday that heat on the area really helps so than you for that suggestion

[TKH]

Good to hear

Get one of these

https://www.amazon.co.uk/Heating-Ele...xpY2s9dHJ1ZQ==

[TaketheCannoli]

That looks good, thanks!

Good to hear

Get one of these

https://www.amazon.co.uk/Heating-Ele...xpY2s9dHJ1ZQ==

[Xantiagib]

No one mentioned CBD yet?

Its not a cure its just a less invasive/harsh way of pain management - easier on the stomach

[TaketheCannoli]

Update:

The 900mg per day seems to be making a difference to the pain albeit with side effects. My balance was so out of whack today I daren't drive! Also about an hour after I take them I'm asleep. I went to the dentist tonight who said he doesn't believe it's a dental related issue but does think I may have a jaw mis-alignment issue. He's referring me to the Dental Hospital Out-of-Line-Jaw Department (yes, they have one!). Meanwhile I have jaw exercises to do every day.

Annoyingly I needed a filling so my face is killing me tonight :(

[Hood]

Update:

The 900mg per day seems to be making a difference to the pain albeit with side effects. My balance was so out of whack today I daren't drive! Also about an hour after I take them I'm asleep. I went to the dentist tonight who said he doesn't believe it's a dental related issue but does think I may have a jaw mis-alignment issue. He's referring me to the Dental Hospital Out-of-Line-Jaw Department (yes, they have one!). Meanwhile I have jaw exercises to do every day.

Annoyingly I needed a filling so my face is killing me tonight :(

Good to hear the meds are working.
Can take a while to get the dose that works for you so that's not too long.

[trident-7]

Update:

The 900mg per day seems to be making a difference to the pain albeit with side effects. My balance was so out of whack today I daren't drive! Also about an hour after I take them I'm asleep. I went to the dentist tonight who said he doesn't believe it's a dental related issue but does think I may have a jaw mis-alignment issue. He's referring me to the Dental Hospital Out-of-Line-Jaw Department (yes, they have one!). Meanwhile I have jaw exercises to do every day.

Annoyingly I needed a filling so my face is killing me tonight :(

It’s probably a TMJ dysfunction syndrome clinic. I’ve never heard of an out of line jaw department in 35 years of practice. I have had a few patients with Trigeminal neuralgia over the years. Often there’ll be a trigger zone on the face. Typically set off by a light touch but not by a firm one. Men might not shave that bit of their face. I’ve also seen a man who had been told that he had TN but the pain disappeared when I extracted his badly decayed wisdom tooth. Another guy had some surgery and it seemed to be quite successful. I can sympathise if it proves to be TN. Don’t underestimate the mental health impact.

[luckyhands]

Have you had a full dental examination lately? As mentioned before, can often be a dental problem. Where are you based? If you're really stuck and you're in Yorkshire, I've got a maxillofacial consultant who works at my practice. Feel free to DM.

[smalleyboy1]

Update:

The 900mg per day seems to be making a difference to the pain albeit with side effects. My balance was so out of whack today I daren't drive! Also about an hour after I take them I'm asleep. I went to the dentist tonight who said he doesn't believe it's a dental related issue but does think I may have a jaw mis-alignment issue. He's referring me to the Dental Hospital Out-of-Line-Jaw Department (yes, they have one!). Meanwhile I have jaw exercises to do every day.

Annoyingly I needed a filling so my face is killing me tonight :(

A relative suffers and they try to take the majority of their meds before they go to bed to avoid the drowsiness during the day. They also found their sodium levels dipped when they were on high dosage of meds. This might have been linked to other medication, I’m not sure.