I'm a 31-year-old woman, and I have daily cycling headaches that last over a month and then go away for several months. It seems like I usually have them in the very early spring or fall, as seasons are changing. They usually involve burning, twisting pain behind my left eye, in my left temple, left cheekbone, and left upper gums. It feels like being punched in the face by something that was on fire. They last maybe 15 minutes, go away for maybe 45, and then come back, but it always feels like there's some sort of shadow pain there. I've woken up a couple of times with extra sharp pain, as well. It wasn't until recently that someone suggested cluster headaches to me.

The thing is, the pain seems to never get above a 6 or so on the Kip Scale. It's burning and distracting and makes me have tunnel vision, but I can usually keep working if I push myself. I have a pretty high threshold for discomfort, having survived cancer and military training. The pain can be distracting enough that I have trouble with verbal skills, but I just soldier on. An old friend, however, totally went off on me today when I told him that I had or probably had cluster headaches, based on the symptoms and information I had in front of me. He accused me of "lying" about my "fad diagnosis" because I wasn't completely debilitated by the headaches.

Is it possible to have CHs that hover around a 6 (maybe a 7 if it's a really bad day)? I mean, pain is subjective, and I'm miserable at times, but now I'm hearing that if I don't experience the fabled "suicide headache", that there's no way I could have CH.

Welcome to Clusterville.

Do you reside in Kings County? If so, I have many qualified doctors I could refer to you that are highly recommended by those here who suffer from CH's.


Mild CH's? If such a concept exists, you are one of the lucky ones not to endure a 10 on the KIP scale.

Did you take the cluster quiz?  See yellow tab on the left side of your computer screen.

Have you been to a headache specialist or neurologist?

Have you been prescribed any medication or tried a treatment that you have found helpful alleviating the pain?

Tell us more...

-Gregg in Las Vegas

G'day KC and welcome. Yep, you need a headache specialist but in the meantime google paroxysmal hemicrania and see if things fit.

Good news is that it's easily managed.

Importantly, let us know how you're getting on because headaches are no fun at all.

I do live in Kings County, NY, but I lack health insurance at the moment, so doctor referrals are unfortunately a little outside the scope of what I can afford at the moment. I haven't been to a specialist, but I've been doing research for the last month or so. I took the quiz and the results could really go either way. I hadn't been tracking the headaches as closely until someone suggested that they may be related to CH and I started thinking back to previous long-term bouts with recurrent headaches.

I know it would make me lucky as far as CH sufferers, and I also know that not everyone experiences things the exact same way. It bothered me that someone told me that there's no way I could have CH because I'm not at a 10 at all times. It was pretty upsetting because I know what I'm experiencing and it's really not fun.

I've been given Indomethacin for pain before and it gave me tremors, so I'm a bit worried about that, but the symptoms do seem that they fit. I guess I won't know without access to healthcare.

Indomethacin are more for migraine headaches, and will
play havoc with your stomach if taken over long periods.
If their is a way you can get to see a specialist, then it
would be in your best interest to do so, even just to rule
out any other nasties that could be lurking.

Cheers, Hoppy.

So what happens when indomethacin is the indicated treatment for paroxysmal hemicrania?

I'd love to see a specialist, but I can't and also pay my rent. Gotta love the American healthcare system, huh?

Hi,
Indomethicin is the recognised treatment for paroxysmal hemicrania and has 100 per cent success. If it works, then that's what you have. But you MUST take something to protect your stomach.

It is possible to have milder type clusters. I have them all the time. You called them shadow headaches and that's exactly what we call them - shadows. Although I would consider a kip 6 to be more than a shadow.

Your so called friend is obviously not a sufferer himself and should do some research and get his facts straight before he pokes his nose into things he knows nothing about.

Your symptoms could be indicative of a number of different headache conditions - one of which is CH, so it's vital that you get a proper diagnosis as soon as possible. Once diagnosed properly all the different " headaches" can be controlled.

Send your friend to this site to read some of our posts, and learn something.
Maz.

Perhaps your regular doctor would consider giving you a short course of indomethicin to see if it helps.

Properly administered the risks are pretty low and it may solve a problem, or serve to rule out another possible cause of the problem you have.

Importantly, this must only be done in consultation with a medical professional, rather than just a passing mug like meself.

maz wrote on Oct 9^th, 2014 at 5:32pm:

Hi, Indomethicin is the recognised treatment for paroxysmal hemicrania and has 100 per cent success. If it works, then that's what you have. But you MUST take something to protect your stomach. It is possible to have milder type clusters. I have them all the time. You called them shadow headaches and that's exactly what we call them - shadows. Although I would consider a kip 6 to be more than a shadow. Your so called friend is obviously not a sufferer himself and should do some research and get his facts straight before he pokes his nose into things he knows nothing about. Your symptoms could be indicative of a number of different headache conditions - one of which is CH, so it's vital that you get a proper diagnosis as soon as possible. Once diagnosed properly all the different " headaches" can be controlled. Send your friend to this site to read some of our posts, and learn something. Maz.

Maz, thank you for all of this. Before I even heard the term "shadow", I had been referring to part of the headaches as that. The worst is a kip 6, but I've got these weird almost-headaches far more often, where it hurts in this odd, sort of ghostly way. And then it gets really intense, like a burning or twisting sensation behind the left eye. And then it goes away.

Thanks, all, for your help. America's healthcare system is such a mess, and I'm working towards getting insurance, but as soon as I do, I'll be getting evaluated!

A lot of my CH have been more on the mild side recently, not the super bad ones i used to get (it could be because i know my triggers now and i also had 3 surgery, maybe they cut some nerves that affected me, i dont know). I know i have cluster headaches because its all round and under my left , only the left eye drups and waters and gets blood shot. My neuro told me that oxygen is only effective for cluster headaches, not other headaches. I went to the ER and got oxygen and within 2 min the pressure miraculously vanished and i was only sore there when i touched it. We are analog beings so its makes sense that we experience pain in a analog way, hopefully your condition will not get any worst. What have you tried so far to prevent/abort the headaches?

I've used:

- Aspirin and other OTC painkillers
- Caffeine (especially with OTC pain meds)
- Rx pain meds (Vicodin, in particular)
- Alcohol (yeah, bad idea, but everything hurt)
- Sleep
- Neck and head massages

Nothing has worked. I mean, maybe temporarily for THAT headache, but then they come right back the next round.

Also, I've noticed that breathing through a tee shirt or something actually helps a lot, whatever that means.

Sounds like you might have an allergy to something in the air?

Can you qualify for Medicaid? Or ask your Dr if there is a free program you may qualify for. I know here in NC our local Drs have set up a program for those who don't qualify for Medicaid but still can't afford insurance. Co-pay is $10 and they will refer you to specialists who are part of the program. If your Dr doesn't know, check with Social Services. You really need to be properly diagnosed so you can go forward from there.

Hoping for pain free days!
Judy