Hi everyone,

I'll try to keep it short. My head hurts and I guess I'm looking for a way out, you know.. and for that I need to know what's going on.. And excuse my sentences, I have a hard time focusing right now.



I'm 32 male. I had some migraines with blue thunderstorms behind my eyes and warped, hurting sound and light when I was about 8-9. rarely.

Then, when I'm about 24 I start having these weird one sided headaches. They seem to show up in early summer when the weather where I live switch intensely. They go on and off multiple times a day for about 4-6 weeks.

I noticed I could kill them with 1 gram of aspirin/100mg caffeine if I took it quick enough. Otherwise I was doomed until it settled down on its own.

After a couple of years I visited a neurologist that did a brain scan but nothing was found. I got a recipe for sumatriptan. That always helped.

I guess this sounds a lot like CH, one-sided, cyclic, pain center behind the eye stretching out to around the ear, the jaw and the neck. The eye on that side is also a little puffy. When it's really bad though they're both puffy and I see blurry.

BUT, I don't have teary eyes, I'm sometimes nauseous and this time I've had constant diarrhea since it started 5 weeks ago. Also, aspirin isn't supposed to work at all is it? And, after seeing a video on CH my impression is you're all around 8-10 in the Kip scale. But I'd say I'm more around 6-8. Oh, and I never wake up in the night because of it. It starts either pretty immediately or with in a couple of hours.

My question is, is this CH? Or some form of migraine? And does it matter?

Also, I have to add, I used an electrical toothbrush to brush the teeth and gum on that side of the head for well an hour yesterday. It felt so good. :D I did so because I thought it could be something with the teeth. Which, by the way, are in good condition. Not the best not the worst, regular. Could it be so? How to distinguish?


- Simon

Hello Simon,

Welcome. Very happy you found us. There's a wealth of information and support here.

You have given a lot of useful information in your post.

There is a number of Primary Headache conditions and some can be very similar in presentation, but not in their required treatments.

So it is very important that you get to a Doctor who is a headache specialist to get a definitive diagnosis.

To help get you the best advice you might tell us where you are in the world.

Welcome again and read all you can here and ask lots of questions.

Peter.

Hi Simon and welcome,
Like Peter said, Your best move is to locate a Headache
Specialist in the area you live to get a proper diagnosis.
In the meantime you could take the cluster quiz to see
where you fit, the link is to your left on this page.

Hoppy

Hi Simon,
                yep, totally agree with what peter and Hoppy have said.  We simply cant diagnose, that's where your headache specialist will come in to it. That's great you've already had a brain scan, what did your neuro diagnose after that ?
At the end of the day, you've come to the right place, plenty of literature to be read here, with helpful tips and all of us have clusters !
As mentioned, your location could help some here recommend a headache specialist experienced in clusters diagnose you properly and that would be the single best thing you did at the moment, so as to get the right help and treatment.
good luck simon
plenty of people that will help and give sound advice here
regards
colin

A real help for the specialist will be keeping a headache journal starting today.

When each one hits, how hard, how long, what you were doing at the time, what you'd just eaten, anything to help him find a pattern.

Full steam ahead and damn the torpedoes,

Brian down under.

Hi and welcome

You've got some good advice. It really needs a headache specialist to give you the correct diagnosis of what you've got.

We understand how you wish we could give you a definitive answer, but this is something we just can't do as there are many possible headache types plus other issues which can give the same symptoms.

Keep us updated.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Agree with all responses you have received.
---
If you are in the U.S.:

LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
==================

Avoid general neuologists unless they can outline good training and experience with headache disorders. Most generalists have meager training and experience. We need deep skills when the situation becoemes more demanding, as when there is a possible you having a mix of migraine and Cluster.

Thank you guys for your replies.

I'm from Sweden. I'll have a look at the links posted, but I guess they're focused on the U.S. But I'll have a look. Thank you.

I did the cluster quiz. Mixed results. A few yes in the first section and a few no in the second section.

I also got a PM suggesting D3. While I find it a bit weird, since we're finally having some sun up here, the inflammation theory sparks my interest. It always comes down to inflammation and oxidation doesn't it, which in turn usually comes down to the basics.

Hi Simon,
                with regards to the sun !   I live in Australia which I'd hesitate to say that we would have a lot more sun hours than your parts of the world, I work in it every day and yet my Vit d3 levels were near non existence. Most that get tested find they are deficient, even with similar to me being out in it 365 days a year.  I simply don't absorb enough. there are other reasons, you can research it on here. But the overwhelming recommendation would be to get yourself to a headache specialist first !  that's important.

regards
colin

I live in Texas and the D3 is working for me really well.. Might want to try it. It's not going to hurt you any at all..

And get to a headache specialist who KNOWS something about headaches.. (you might have to go to several before you find one that actually knows something - we've all been there).

And keep us up on your progress.  :-*