Could my headache be Trigeminal Neura... - National Migraine...

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Could my headache be Trigeminal Neuralgia?


Hi. I have suffered with bizarre migraine for years.

I was told It was hemiplgic migraine last year but I still get strange symptoms and wonder if it could it be TA?

One sided symptoms.

Normally I get a blister/ulcer on pallette in mouth then burning feeling to scalp cheek for head and nose.

I can get severe ear ache. Tooth pain, swollen gums and eye pain with the constant feeling of sunburnt skin on one side of face

This can last 2 - 5 days sometimes more

I have had mri. Ct and contrast Ct

Now on topirimate for suspected HM

I have not had hemiplgic./Stroke like attack but still get the burning pain/headache with swollen gums and tooth pain.

No dental issues. My consultant said the ulcer is possibly my aura?? Does anyone else get symptoms like me?!

8 Replies

Hi Chrissy. I'm sorry to hear about the problems you have. As far as I understand, the trigeminal nerve is involved in all types of migraines and unfortunately, as there are no cure or reliable treatment for migraines, you get the 'one size fits all' NHS protocole, which is Topiramate at the end of the road. The other issue is that consultants and especially GPs are too quick to dismiss anything you say as a 'byproduct' of the migraine. I've had neck pain for almost 2 years, before I started having chronic headaches, and to this date all the doctors I have seen have refused to even touch my neck, saying that it is a result of migraines, although it ticks all the boxes for occipital neuralgia.

I get this feeling of sunburn on my cheekbone and painful teeth, blurry vision on the same side as the neck pain. Feeling that my scalp is on fire, sometimes.

There is a thing called sphenopalatine ganglion which is involved in neuralgia and migraines. As far as I understand it is the main culprit in cluster headaches. It gives these symptoms of pain in the teeth/gums/eye and roof of the mouth. Maybe check that.

I wish you good luck but please, do let us know if you have a breakthrough at some point.

chrissy33 in reply to Chleo11

I looked up that and it does not sound as severe as that

I also experience all these symptoms . I have migraine and TN also auto immune probs. I ask her recurrent shingles, and it’s a very similar pain

I've never had shingles and have had these headache since mid 20s at first it was blamed a menstrual

Have you ever been tested for the herpes virus? (shingles is a variant of that). Is your headache on the same side as the blisters?

chrissy33 in reply to fluffyfur

No l haven't but its only one blister that produces a headache. I don't get any other ulcers in my mouth at any other time

fluffyfur in reply to chrissy33

Sounds like it could be trigeminal neuralgia then, but many headache conditions can mimic one another and also symptoms can overlap. I recommend seeing a headache specialist and not just a neurologist, since they are more familiar with all the headache types. You may have to try different meds if the topiramate doesn't give you relief. I have tried dozens of meds.

Hi Chrissy, as a TN 'survivor', your symptoms don't really match those of TN.

TN pain is excruciating painful. The trigeminal nerve originates at the brain stem and there are 2 of them (geminal/twin). Each has 3 branches (tri) that go to the forehead, top jaw and lower jaw. Each nerve terminates in the centre of the head/jaw. This is one indication. You could suffer with 1 or all 3. Mine was upper and lower jaw.

Generally, people usually have sev6but short duration attacks, maybe a few seconds to a few minutes. Mine was unfortunately 24/7.

Basic treatment can be just medication. The most extreme is MVD (micro vascular decompression) solution.

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