Trigeminal Neuralgia

[GGourmet]

some few months ago, I wrote about random short head aches last perhaps just a few seconds with many every hour.

After many months of trials with corticosteroid, assuming this might be sinus related, the latest MRI shows that a year after surgery (Gamma Knife), the tumour has been pressing on the Trigeminal nerve.

As the headaches are short lived, intense and similar to ice cream head aches, a trial of Carbamazepine has just started.

Prognosis is good, in that the tumour is expected to shrink sufficiently to take the pressure back off of the nerve.

Total cases of Trigeminal Neuralgia from all causes are about 0.006% of the population p.a. So, hopefully nobody here will experience this but, in case you do, you have at least some ideas.

[Lemon00]

Can I ask how big is your tumour? I suffer from continuous headache that is probably migraine and something else, but the neurologist doesn't know what the other component could be. I've been told it's not possible that the tumour is causing this headache because it isn't pressing on anything. It's been difficult to deal with this since the pain doesn't really respond to any medications I've tried so far.

I hope that the tumour shrinks and your situation improves. Dealing with head pain is not nice.

[GGourmet in reply to Lemon00]

My tumour is now around 13mm at maximum length. Its position along the auditory nerve means it is close to the Trigeminal nerve. The consultant letter states that he believes the tumour has swelled, as expected, and is probably pressing on a blood vessel and it is likely that the blood vessel is compressing the Trigeminal nerve.

You describe yours as a continuous headache like migraine but, importantly, is it centred on the side of the head where the tumour is? If it is general across the whole head, the cause is not likely to be Trigeminal Neuralgia.

For you, this may be the case. It may not be the tumour itself but something the tumour is pushing aside that is compressing the nerve.

Please check for the symptoms of Trigeminal Neuralgia to see if they match yours though. These are typically short bursts of intense pain lasting just a few seconds at a time which may extend in duration, as time goes on. Often associated too with facial numbness but there are three components of this nerve and in my case it appears that the Ophthalmic component is being impacted.

If this sounds like you, I suggest pressing hard for pain relief. My consultant said it was often a case that trying differently pain relief/medication to see which impacted the condition is often the best way of narrowing down the root cause.

Wishing you the best in getting your resolution.

As a foot note: if this has occurred since surgery it may reverse as the tumour shrinks back but, my consultant said this could be 2 years away.

[Lemon00 in reply to GGourmet]

Thank you for your reply. I have a 5mm tumour on the right side. And all my pain symptoms are on the right side. The only exception is when the pain is extremely intense, that's when it's on both sides and I can feel the pain on my face. This comes with extreme light sensitivity. I've been a migraine patient since I was a child and my symptoms have changed significantly in the past 4 years. I'm in my 30s now.

I've been reading about trigeminal neuralgia and the short bursts of pain don't match my symptoms. The pain lasts longer. I've been reading about atypical neuralgia and it sounds like it could be what I'm experiencing. I'm starting gabapentin next to see if it helps.

[GGourmet in reply to Lemon00]

I hope that this helps. Gabapentin is used to control Trigeminal Neuralgia too so you may have all bases covered.

Happy New Year.

I’m now up to 300mg/day Carbamazapine which reduced the attacks at 200mg so, hopefully I’m at the place I need to be.

[Ukulele21]

I’m so happy you have a positive outcome and the treatment is working.

Have a good Christmas and happy new year x

[GGourmet in reply to Ukulele21]

Thank you but I’m only on my second tablet - here’s hoping.

Happy Christmas.

[GGourmet in reply to Ukulele21]

Once up to 200mg a day, after 5 days the attacks reduced and I’ve just started 300mg last night. Hopefully that’s as far as I need to go.

A friend of mine had AN treated 6 years ago and never followed up about the headaches so, I guess his symptoms were minor and probably the tumour was far away from other nerves. There is almost zero information on these headaches on AN sites and perhaps that should change. It’s real and debilitating.

[Sheryl5013]

Hi there

My tumour has mass effect on trigeminal nerve.My consultant as referred me for radiotherapy as not big enough to operate (14/12mm in cpa but has grown a bit but no size given last time).I do get stabbing pains near temple on that side that come and go but my main symptom is complete numbness over mostly my middle part of face and also head and numbness in mouth with some teeth also being numb.. really weird sensation 😂 No one has suggested any pain medication and I was wondering if you had any numbness etc and weither it’s helping with that?😊