TN or cluster headache?

General General TN & GPN (Old Site)
1

Has anyone had a Dr. say they have cluster headaches instead of TN?

I had one neuro write me off, said it was "atypical facial pain" and refused to see me again. Another neuro said I wasn't textbook for TN or for Cluster headaches and he wasn't sure. Current neuro says it's cluster headaches, he's pretty sure about it.

I'm not so sure. I mean, how do you know? I had thought it was type 2 TN. But when he threw the CH diagnosis at me, I didn't know what to think. I've read and read, and I think I could go either way. Of course both are pain from the trigeminal nerve. And I could care less what they are going to call it. I just want the pain to stop.

We've tried a bunch of different meds. I have been on Lyrica, topamax, and vicodin. Lyrica made me severely depressed and didn't help. Topamax made me into a zombie and didn't help. Vicodin helps a bit, but I get headaches from it if I use it too much. And I think it really just makes me just deal with it even though the pain is still there if that makes sense.

Currently I am on tegretol. Don't think it's working. I had one of my worst episodes while on it. Also continue to have an average of 1 or 2 a day while on it. Recently I've been put on norvasc which is a blood pressure med that I guess can help with cluster headaches. It's helped a little, but again, was on it when I just had one of my worst episodes. Also am on Baclofen for a nervous system/muscle problem and neuro says it should help along with the other meds.

So I'm on 2 preventatives that aren't really working and tegretol makes me pretty tired. Plus I have nothing to take but advil (woopie! lol) when I have an attack.

Neuro doesn't want me on pain meds. He says if we put me on pain meds now, what are we going to do in 10 years. Not sure I want to be on pain meds, but you all know, I'll do anything to get rid of the pain.

for reference I'm 31 female, and also have an unknown neurological problem that neuro is trying to figure out. So not sure if they are related or not.

Sorry this was so long. Just kind of desperate for pain relief. Neuro is good and will call me back personally when I have questions, but I feel like I need something different and don't know what we can do next. Also don't know if it matters if it is TN or CHs?

2

Hi--sorry to hear you are hurting... I am no doc for sure-- but from everything I have read tegretol usually works for tn--though it make take a few weeks-- some people have relief in a few days... it does not always keep working and the dose needs to go up but they use it to diagnose TN. If it works-- you def have it.. if it doesn't work-- I think you can still have it though because some people on here did not get relief from tegretol-- a confusing ailment for sure...

3

Ask your doctor to try you on indomethacin. It is diagnostic for cluster headache. If it doesn’t work it’s pretty much a no to cluster headache from what I have been told. It’s an older drug, so a lot of docs don’t think to try it.

4

I have read about something called Cluster Tic Syndrome on the Trigeminal Neuralgia Association of the UK website. Here is what it says:

Cluster tic syndrome

A blend of three types of pain: sharp stabs like TN, throbbing pain and related symptoms of cluster headaches, and a one-sided headache that follows the sharp stabs. Some say it is actually a dual case of TN and cluster headache, while others say it is a distinct condition probably caused by damage somewhere along the trigeminal nerve’s path. TN medications, especially the ones used for atypical cases, often help, but this condition occasionally resolves itself.

I have NO idea if that is helpful at all, but the TNA of the UK acknowledges that there exists some crossover, which hopefully makes you feel validated at the very least. I know what you really want is pain relief. But I am also with tacocat, you can still have terrible pain on a medication if it isn't the right dose, it doesn't necessarily mean it won't work at all. Unfortunately the higher doses sometimes come with side effects such as sleepiness, etc. I wish you luck in finding something to stop the pain ASAP!

5

Different medications are used,to treat Tn and Cluster headaches. If tegretol isn’t working ask for gabapentin. It’s actually becoming a drug of choice. Is of benefit to me.