Doctor thinks I may have cluster headaches, I'm not so sure

19 Nov, 2012 - 10:59 am

Hi all,

For almost two weeks now I have been suffering from headaches daily. In the past I have never seriously suffered from regular or particularly painful headaches, so this was quite out of the norm for me.

The headaches come on early in the day, and seem to last into the early evening. For the most part the headaches are constant, with the intensity varying throughout the day.

There is noticeable light sensitivity, and quite loud noises also seem to affect me as well. The aches are always towards the outer edge of my right eyebrow, with the pain sometimes extending across the top of the eye, around the side of the brow, or towards the back of my eye. They have never occured elsewhere.

On some days, the eye on the affected side of my face tears up at times, as though I have something irritating my eye.

At their worst, the headaches feel like I have been hit on the brow above one eye (always the same side) with a hammer. This can become intense enough to make it difficult to concentrate on anything else, but isn't as painful as other people here describe their cluster headaches to be. At times this dulls off to a slight ache (as though the hammer blow had been a couple of hours before).

I have tried paracetamol, ibuprofen and codeine, all with no affect. The doctor did give me indocid, and following taking it for a couple of days the aches decreased considerably in pain and frequency, however I don't know if I can directly attribute that to the indocid. To get a better 'baseline' of my symptoms, I have decided to go another week again without taking anything to see if and how the symptoms continue.

Today I am home from work and have all the blinds drawn (and have turned down the brightness on my computer significantly). Despite this I am currently suffering a headache now, which on the scale of what I've been suffering previously, would sit at about a 7 out of 10.

I understand that this doesn't seem to come anywhere close to what cluster headaches sufferers describe in terms of pain, which is why I am unsure of the doctor's currently theory. Another part of me is paranoid that the doctor may have been right, and that what I've been feeling so far is only the prelude to proper cluster headaches.

I would love to hear what other people think of my symptoms based on their own experiences (it would be great to know that what I've described is nothing like what cluster headache sufferers have experienced so I can stop worrying).


Cheers,
Sean

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19 Nov, 2012 - 11:23 am

Hi Sean
From first read--sounds more like migraines to me BUT remember our disclaimer!
Which ever it is--the result is the pain you are experiencing.
I note that you have gone through the normal over the counter type meds with no effect. Pretty standard for both CH and migraine sufferers.
I am surprised that you have not been prescribed a pain abortive ie imigran or relpax. To be taken at the first sign of a migraine for relief, fortunately for some CH people can be taken when attack really is full bore.
Oxygen used as indicated on the left in all the information has proven to be of immense assistance to many. It is also used as a dianostic tool. Depending upon on your locality and access to immediate oxygen on start of attack, oxygen is acknowledged to stop CHs in their tracks, whilst having no effect on migraines.
Take note of when where, what doing, eating etc -- prepare a headache journal, what took, with what effect etc. By doing this you are building a history for your dr about your headaches. This will also be beneficial when visiting a neurologist.
Our routine is usually to have a CAT scan and even an MRI--both to rules out any possible nasties. Welcome these back as being clear.
A good history, some one who knows what they are talking about re headaches (eg specialist neurologist) and a good GP will be you front line team.
You need to keep your family and friends in the loop. I never refer to my CH attacks as headaches--but pain in the head or head pain.
Follow on with your GP, become more informed (which it sounds like you are doing--well done) ask for pain relief!
Diagnosis to follow.
Good luck
Heather

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19 Nov, 2012 - 11:58 am

Hi Sean,

Welcome to the nut hut.
Recent presentation of otherwise unexplained head pain, in the last two weeks, shows a possible primary cause other than a Headache condition in itself. Perhaps precautionary scans should be sought, as with the emergence of any new head pain.

Your reported attack duration is too long for typical CH.
CH lasts usually from as little as 20 mins to 180 mins, or thereabouts.
There are atypical types of CH, or other Headache conditions that mimic CH, but again CH duration is usually shorter than the Headaches you report.

If you are still staring at a computer screen (even with contrast/brightness down) and rate pain levels at 7/10, it does not sound like CH to me. This seems like Migraine - photo and phonophobia are typical Migraine symptoms, worse in my Migraines and less so in my CH.
Computer screens (and the clarity of mind to operate a PC) go out the window for me at about 2/10 pain levels.

The nature of the pain you describe seems long lasting and unilateral.
Most GPs will single out the "unilateral" aspect when diagnosing CH.
GPs should write more referrals to Headache specialists and refrain from diagnosing what is a complex condition in general practice, IMO.
Often a GP will be correct in diagnosing CH, only to go on to manage the condition very poorly. They are not equipped or trained to correctly recognise, diagnose or treat cluster headache. I recommend referral to a specialist, most probably a Neuro.
Any GP worth their salt will quickly see that CH is not an area for General Practitioners, if you want serious management and treatment options, you will need to be an outpatient of a major hospital, in my experience.

Because your headaches are not yet correctly diagnosed, perhaps keeping a Headache diary will help in initial diagnosis of your Headache condition.
http://uhs.berkeley.edu/home/healthtopics/pdf/diary.pdf
If you feel it is worthwhile, print off and fill in a couple of weeks worth of these and take them with you to a specialist, they like this sort of info on first presentation.

An Indocid response is a good thing, CH specialists use Indocid response to preclude CH from other Headache conditions.

I honestly think you have very little to be concerned about (pending clear scans).
I don't think you have CH at all, Sean.
Any new head pain, such as you described, should be checked out.

Have a look through the IHS diagnostic criteria: http://ihs-classification.org/en/
You may be a dead ringer for Unilateral Migraine, Hemicrania continua, Cervicogenic headache or anything but cluster headache!

I hope this helps and is good news.

Remember: I am not a Doctor!
Lately, a few people have mistaken me for someone with a Tertiary education in Medicine.
This is not the case, I am just another CHer here.

Cheers, Ben.This post was edited on 19/11/2012 at 12:00 pm

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19 Nov, 2012 - 3:25 pm

Disclaimer: I'm not a doctor. Consult you health care provider if pain persists. Apply directly to forehead etc. etc.

I remember that my first few cycles were very annoying but still bearable. By about the 3rd or 4th cycle, the CH had become full blown and the pain was excruciating. So the lack of "I want to kill myself" pain doesn't necessarily rule out CH.

However, I too think that the other symptoms point to migraine than CH.

Consider getting your eyes checked to rule out a possible cause. I had small level of far-sightedness which was undetectable in day-to-day life, but was enough to cause unilateral headaches from eye-strain after long hours in front of a computer (especially the old blinking CRT screens).

Another thing that helped me with diagnosis was sumatriptan (most common brand name Imigran). If it works, then you've narrowed it down to either migraine or CH.

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19 Nov, 2012 - 3:25 pm

This post was hidden by a moderator.

20 Nov, 2012 - 5:00 am

Double post hidden, James.
When you say 'Consult health care provider- apply directly to forehead", do you mean give them a head-butt? I've certainly felt like doing that sometimes. i am joking of course.

Sean, as others have said- your symptoms present more like migraine than CH, but the conditions are not mutually exclusive. N.B. i'm not a doctor either.
If you're not happy with your diagnosis, get another one from a different doctor and/ or neurologist. Incorrect diagnosis is very common.
The same goes for treatment- it might take a lot of experimenting until your doctor finds a course of treatment that works for you. Keeping an accurate diary will also greatly help your doctor during this period.
Good luck to you, and let us know how you're getting on.
cheers peter.

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20 Nov, 2012 - 5:10 am

The "apply directly to forehead" bit refers to an infamous advertisement for a supposed headache remedy a few years back.
http://en.wikipedia.org/wiki/HeadOn

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20 Nov, 2012 - 9:24 am

Thanks everyone.

My Doctor hadn't settled on a diagnosis of CH, and wanted to followup with me after a while to make a more informed diagnosis based on longer history (or to refer me to a specialist). I'll keep a diary for a couple of weeks before heading back and see where we go from there.

I'm glad to hear that most of you think it doesn't sound like CH. I'll cross my fingers and see how I go.

Cheers,
Sean

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24 Nov, 2012 - 8:40 am

Hi Sean
Whether CH or migraine, ensure that you have a management plan organised with your Dr. What to take for the pain most importantly. Unfortunately Drs seem at times to be a little slow in the treatment of the pain. Whatever you are prescribed--ask for the drug information sheet and become knowledgeable about the drug itself. Information on drugs is also available on the left under
A_Z listing

You are right to keep a diary (whether or not you feel "all about me" or not). This can be the key to diagnosis and also treatment. Watch out for any effects from alcohol, chocolate etc. I mistakenly ate a "cornetto" with chocolate--bummer!

Wishing you well
Heather

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