Does anyone have Trigeminal Neuralgia headaches?

I've been woken up every night by what I believe to be cluster headaches recently. However... they are always on the left side whilst my TN is on the right so I don't think there's a connection. For me... I think it's this neverending heatwave in the UK. My room is like an oven at night. Not much I can do about it unfortunately.

However... if you've been having headaches non stop since the acupuncture then it might not be cluster headaches. Have you tried seeing a Cranial Osteopath? They basically just massage your temples and the back of your neck and then hold your head for 30 minutes. And even though it all feels extremely silly... it really does wonders if you have any tension up there.

Maggie, I had Mvd surgery in 2016 and have been having fairly painful head aches on that very side they operated on.... How many carbamazepine do you take? I am so sorry for your pain but I know TN can come back on either side so I would not hesitate to see some one ! God Speed ,Mallory

Hi ! Maggie i have had TN for over three years now and yes i also got the horrible headaches like if my brain wanted to explode all i got from my doctor was to take higher dose of carbamazepine i was taking up to 1,000 mg a day i have three kids you i couldn't function with that much medication so i downed the dose and this time it took me about eight months for TN to go away try CBD oil i bought some and it helps relieve the pain abit and helps to sleep at night is when i take it also the CBD ointment i rubbed on my head helped i hope this can help u abit .

Hi, Maggie,

A very long story really short!

Migraine with or without aura (very fickle!) from age 14 ish, ocular migraine, and about 15 years ago I started getting pain in left eye. The eye 'headache' got progressively more painful, more frequent, spread around the left side of face (and right, I feel blessed! 🙄, and a lot less responsive to pain control no matter what I took. By the time I was self medicating with husband's Tramadol and MST and still getting no relief I finally saw my GP. Now, being a nurse I did some pretty exhaustive research and ruled out cluster headache (my phone's predictive text wants to put bombs!! 😁, and a variety of other conditions, so I sort of expected TN. Anyhooo, medication worked, Neurologist confirmed diagnosis of TN and here we are now.....

(I have bilateral TN affecting all three branches of the nerve). In the last year I get TN attack in the early hours after a trip to the loo and return to bed, usually on the left, it goes after an hour or two, then about 4 - 5 hours later I get an horrific migraine (usually with nausea, vomiting and the utter weak and feebles and just for fun TN at the same time). This eventually subsides after anything from an hour to a day or two. More weak and feebles. But the TN continues for several hours on and off. MRIs are clear.

More research and I find that headache whether migraine or otherwise can occur with TN but is very rare. I recently tried one of the triptans (Sumatriptan) which if taken at the onset of the weak and feebles does prevent the migraine pain, and nausea and vomiting.

My advice is to see a GP, or better yet a Neurologist, to get a better medication to deal with the headache.

Carbamazepine works well for and for some it's effective against migraine but for many people the high dose and side effects are discouraging. Discuss your options with a doctor and hopefully you will get some relief.

Best wishes

YueMing (jeremy) Ying proffessor

This men treated my tn 6 years im free from it

hello Maggie, I have sufferd with migraines for 10/11 years ever since since I was around 9/10 I get the zigzag line's lasting about 40 minutes then after that I get very bad temple pain this also comes with the sick feeling. Now from the start of 2018 I had 0 migraines, instead I was having episodes of TN, I experienced 3 attacks then went to the doctors he said straight away I have TN he put me on 100mg carbamazepine told to increase daily then he sent me off.... so basically now I am thinking if migraines & TN are connected?

Also over last weekend I had my first ever migraine since 2017, I really am at a lost and I dont think my doctor is taking me seriously..

Maggie,  I cannot help with your questions about migraine headaches but I do get Headaches which seem to be coming from my trigeminal problems  and these headaches only seem to occur when there is a low pressure in the weather. The only way to confirm Trigeminal neuralgia is to have a MRI to see if the trigeminal nerve is being compressed by an artery . In my case the trigeminal nerve had an artery that had wrapped around the nerve and seemed to be putting pressure in at least 3 places on the nerve. I then had The MVD surgery and so far only have problems with these headaches every now and then. Get a MRI and then you will know for sure. Good Luck and God Bless.   Mallory