cluster headaches or trigeminal neuralgia

[Mrmcc]

Hi

ive been T1 since 2016, for the lat few years i had what was then diagnose a cluster headaches, however any pain relief i was given didnt work. The last GP i saw basially said the previous diagnosis was wrong and he suspects i have trigeminal neuralgia, i must admit after reading about it it does fit more perectly. He's put me on Amitryptaline for now, Does anyone else have a similar experiance?

 

[DCUKMod]

Hi

ive been T1 since 2016, for the lat few years i had what was then diagnose a cluster headaches, however any pain relief i was given didnt work. The last GP i saw basially said the previous diagnosis was wrong and he suspects i have trigeminal neuralgia, i must admit after reading about it it does fit more perectly. He's put me on Amitryptaline for now, Does anyone else have a similar experiance?

I know @LooperCat had a long challenge, but is doing really well now, and I recall @lucylocket61 having a bit of a tough time with it.

Hopefully, they might find a moment to say hello.

Good luck with it. It's a pretty vile condition.

 

[Rusty_Sweetbread]

Hi,
you need to be seen by a neurologist rather than a GP, as they have more experience in differentiating between CH and TN.

Pain relief doesn't work for CH - you need medical oxygen, and this usually requires a specialist's prescription. (The headache clears up within a few minutes)
(Also, indomethacin should be trialed to rule out PH - a similar condition)

TN is usually treated with anticonvulsants (such as valproate, phenytoin, etc.), with a tricyclic such as amitriptyline used in combination, and an antispastic such as baclofen is also often added.

Nasty conditions, both, and both fiendishly difficult to diagnoses and treat properly.

Check out ouch.org , and tna.org.uk and maybe try EndTN on Facebook
https://www.facebook.com/groups/184086478397607/

 

[annliggins]

I had the misfortune to be diagnosed with TN a few years ago. My dentist diagnosed it when i went with a" toothache " i couldnt get rid of. Once i started on Tegratol an anticonvulsant i got immediate relief and sought the backup of my gp for dosing. It took 6 months from starting the drug to weaning completely off it. I was lucky , i t can go on for alot longer. Hope you get it sorted its EXTREMELY painful X

 

[TriciaWs]

I had trigeminal neuralgia after dental treatment many years ago, put on tegretol for a few weeks and it resolved, repeated after a year when it came back. Then again about three years later before it finally settled down.
I have what is possibly cluster headaches since I was a teenager, and diagnosed with silent migraines recently by a neurologist, as well as the more common form.
The cluster headaches are a blinding pain behind one eye, usually on the right side but occasionally this switches over, trigeminal neuralgia was along the jawlines and only ever on one side.
Very different treatments for these conditions, so I hope the diagnosis is right now.

 

[Mrmcc]

Thanks everyone, so far ive seen three different gps, one said cluster headaches, the recent one said TN, so far none of the pain killers have worked, and im on Amitriptaline now, back at drs at the end of the month, I have been to a neurologist for a CT scan which was clear, but my GP is re-referring me again. it does feel like the nerve above my left eye is where the problem is, they just cant agree on what that problem is!

 

[Rusty_Sweetbread]

Diagnosing CH is tricky, but you can help your neurologist: https://pn.bmj.com/content/19/6/521.full

Similarly, diagnosing TN is also difficult: https://www.ninds.nih.gov/Disorders...n/Fact-Sheets/Trigeminal-Neuralgia-Fact-Sheet

As these are both relatively rare conditions, patients often need to do some of the heavy lifting with the diagnosis.

Painkillers are not designed to treat TN or CH (and a GP should know this), so ask them to provide some research or guidelines to support their decision to offer painkillers.

An MRI (FIESTA, thin-slice, with contrast) rather than a CT scan will tell them more about your vascular architecture and if there is a neurovascular conflict underlying your pain, this will soon be revealed.

 

[novorapidboi26]

My wife was diagnosed with TN and as mentioned above, she had to do all the research and almost self diagnose.......she went for some scan to eliminate anything sinister and the diagnosis was confirmed....

shes now on Oxycarbazepine daily and it seems to work a treat.......its a horrible thing to see and go through......i've had dental pain similar to this before and its horrendous.....

If it is TN, then you need a medication like the one above, no pain killers will touch it...

 

[lucylocket61]

I am now waiting for a MRI scan for my head to help find out more about the pain I get.

I have had a lot of amalgam fillings and several crowns. Does anyone know if an MRI scan could damage these please?