Hello everyone. My name is Michael and I’ve been suffering with a weird headaches since I was 15 years old. I am 34 now.

My first experience with this headache started when I was 15, it started in the morning radiating behind one of the eyes. Pain was like 7-8 out of 10. Lasted about an hour. I thought initially it was due to lack of sleep. By the time I was 17-18, these headaches would happen more often. I would have few days out of a week for a period of 2-3 weeks with headaches in the morning. It usually would always start in the morning before 1pm (during the cycle). If 1pm passed I knew headache will not start. I would have good 6-8 months with no headaches. It is very weird.

Over the years the pain was getting stronger during the cycles when headaches would return. I remember well when I was 24-25 years old how the pain got stronger. It would accelerate in 10-15 min to the pain being 9 out of 10. Headaches would usually last one hour or one hour and 30 minutes and would return every other day or so. If the headache gets to the level of 8 out of 10 or stronger my eye starts running tears and my nose is running too. Only one eye would be running the one that is having pain like someone is squeezing it from behind it.

Surprisingly the following would help me to stop the headache back in the day:
1. driving with AC on the coldest level and breathing that air deep for 10-15 min.
2. Putting hands behind the head, and pressing with fingers hard on the back of the head. It would help somewhat.
3. Eating meal or even banana just as it starts.

The following I’ve noticed to trigger the pain during the cycle:
1. Any amount of alcohol will trigger mild to strong headache in an hour after consuming the alcohol.
2. Lack of sleep or not enough sleep.
3. Stress.
4. Staying hungry but not always the trigger.

In the last 2-3 years the cycles got a little longer with more episodes. I could get headaches every morning and in the evening. I tried acupuncture first 2 years ago and it helped me surprisingly after 3-4 sessions to stop the cycle.

This new cycle started in Dec of 2017, kind of mild pain that slowly got stronger as weeks passed and it’s the end of Feb right now and I still can’t seem to break the cycle. It would go away for a few days or a week and come back. Episodes are every morning, afternoon and evening. Pain can be mild like 5-7 out of 10 and then other times much stronger. Lasts up to an hour as before. Acupuncture this time around is having difficulty to stop it but it seems to help with the level of pain.

Would love to hear your advice? Does it seems like Cluster headache?
Is it normal for cycles to last longer and episodes happen more often through the day?
Could it be something more serious?

Thank you for reading and would appreciate any help you can give me.

Mike,

Welcome. All headaches are horrible, so there’s loads of understanding and support here.

Firstly, we cannot diagnose. There is a number of headache types and a formal medical diagnosis is the best way to ensure you get the appropriate treatment.

On the top left of this page you will see a list of tabs. Open the Cluster Quiz and it will give you some idea about CH.

Have you seen a Doctor and have you ever been referred to a Primary Headaches Specialist?

If so, please elaborate a bit about your treatments to date.

Come back with questions.

Best,

Peter.

Everything Peter said. 

A true diagnosis is terrifically important so you can start a proper treatment regime but the big thing about it is ruling out other diseases with very similar symptoms, and some of them can be quite nasty.

A big help to the doctors will be if you start a headache journal keeping all the details of individual hits  -  time, duration, pain level, what you'd been doing/eating, all that sort of stuff.

It might seem a bit of a long haul but I can promise it's worth it and we'll help you every step of the way.

Full steam ahead and damn the torpedoes!

Brian down under.

Hi Mike and welcome.

Brian and Peter have given you some excellent suggestions as although we know the symptoms of CH very well, the diagnosis requires eliminating all other possible causes for the symptoms you're experiencing. This is the hard bit and it is why we always recommend that you work with a headache specialist to get a diagnosis. This is the key to getting the right treatment for what you have.

We've all been through this process, so we know exactly what it is like. Keep us updated with your progress and we'll offer support and suggestions along the way.

Hi Michael and welcome, as others have said, because my thinking is, if they were CH's, you would have needed to check in with a doctor long before now.

Cheers Hoppy

Hoppy wrote on Mar 1^st, 2018 at 11:15pm:

...my thinking is, if they were CH's, you would have needed to check in with a doctor long before now...

Possibly yes, possibly no. For some people it can take weeks, months or years for the classic CH symptoms to develop. Plus some people handle pain better than others. I recently had "fun" with another very painful condition and the staff at the local pain service were amazed at how well I handled it, but then they hadn't come across too many people who have experienced a Kip 10 CH.

Many of the symptoms and triggers that Michael described seem to be aligned with CH, but it is only a doctor with the skills, experience and knowledge who can really make that call.

Mike99,

Sorry you are here, but glad you asked for help.

I'm also sorry I'm getting to this so late. I hope you have followed up on the advice given above. You have heard from some long-time CH warriors who know what they are talking about. If they speak, I listen, and I've been doing this for a long time, too.

Yes, it sounds like you may have CH. NO, that is NOT a diagnosis. That is a confirmation you need to get into a qualified, headache knowledgeable neurologist ASAP. Yes, there are a LOT of neurologists who don't know a headache from a hemorrhoid, so choose wisely and ask questions before spending good money to be mistreated.

Insist on an MRI/MRA with contrast and a CT scan as part of the diagnosis. No, they won't detect anything if it is CH. THAT is the good news! If they detect something, it isn't CH, and it needs to be dealt with right away. The chances of that are slight, but are not something to play around with.

I hope you will touch base back with us and let us know how you get on.

jlc