Hello,

Just wondering if anybody has any examples of a headache diary or any tips for making one?. I am a computer nerd so struggling  ::). I want to show my Gp just a week of what clusters does to me? They really don't understand, I have two other long term health problems which of course with no sleeping and trashing around at night make me feel like death. But then I think with clusters alone you can feel like that anyway.

Any tips or advice really appreciated. Hope all having nice and CH free weekend.

Thanks
Breda

Hi Breda
Record when you go to sleep and wake up, what time the attacks occur and how long they last, when and if you abort them and with what. Keep a record of the weather and what you eat and drink  Make a note also of any coincidences, for example do you get a CH every time you have a hot bath, or watch tv, or go out in the cold or smell a particular scent etc. All this will help to determine if you have some thing that triggers your CH.

At least your GP will see that you are not getting any sleep, and that you are being pro active in trying to help yourself.
Hope this helps.
Maz.

Hi Maz,

Thank you. I didn't think of keeping record of last thing I ate. Definitely noticed too hot a bedroom is a trigger for a really bad one if I am in a bout. Have started turning radiator down in my room.

Thanks for your help much appreciated :)

My headache diary is an Excel spreadsheet with the following columns and example of the type of data:

• Date - 9/3/2014
  
• Day of week - Sunday
  
• Time - 9.52am
  
• Where - home
  
• Kip pain scale - 7
  
• Time to abort - 5 minutes
  
• Method used to abort - O2 25lpm
  
• Medication - Red Bull
  
• Pain location - RH temple
  
• Pain description - standard pure pain
  
• Restless - Y
  
• Photophobic - N
  
• Audiophobic - N
  
• Notes - had shadows all morning until CH came on
  

With the spreadsheet data I've got pivot tables so I can see things like:

• Locations and number of headaches in each
  
• Day of the week
  
• Time of day (by hour)
  
• Average times to abort, total and by Kip level
  

The Kip scale is:
0      No pain, life is beautiful
1      Very minor, shadow's come and go. Life is still beautiful
2      More persitent shadow's
3      Shadow's are getting constant but can deal with it
4      Starting to get bad, want to be left alone
5      Still not a "pacer" but need space
6      Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"
7      Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
8      Time to scream, yell, curse, head bang, rock, whatever work's
9      The "Why me?" syndrome starts to set in
10      Major pain, screaming, head banging, ER trip. Depressed. Suicidal.

This is a very useful way to describe the pain by its effect and not some arbitary scale

I still use the Headache Diary I got from the UK site... OUCH.com. Can't find it anymore since the site is gone but I have it on PDF. You may be able to find a simple headache diary online under images that you can adapt to clusters. I use mine now to track for myself when my CH peak and to look for patterns when I was starting the D3 regimen.
Judy

Hi Judy,
OUCHUK is back up and running, but they've lost all there
old data.

Hoppy.

Thanks Hoppy! Glad I kept it on PDF! Hopefully won't need to print any for a LONG time!

Judy

If you own a smartphone then there's an app for that.  It's what I use and it works great, very easy and my neuro loves it.

Thanks everyone. I made a start today. Its very depressing doing it. Just done 2 weeks and will see how easy mr Dr finds it to understand. Shame the ouch one is not there anymore.

Breda

Headache diary resources:

(Thanks to my Headache Specialist extraordinaire, Professor Paul Rolan for his tips on accurately recording frequency, severity and duration data in headache conditions.)

I've found the "There's an app for that" approach to headache diaries frustrating. Peering into a smartphone with CH attack is not so easy, or very smart of the app designers.

There is also some evidence that staring into smartphones can cause ... headaches...  ::)
(Full article in the Journal of Vision for those interested: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE )

A convenient PDF version of a Headache diary is available below, click on the link below, then simply print out as many copies as you need:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

How to fill it in, from the NPS.

The NPS Headache Diary booklet:

Source: National Prescribing Service (NPS) MEDICINEWISE.


Quote:

How can this booklet help you? This booklet is designed to help you understand and manage your headaches by recording information about them and any treatments used (medicine and non-medicine options). Your doctor will want to know the overall pattern of your headaches, how they affect you, the treatments used and what the triggers may be. Doctors and people who experience frequent and persistent headaches have found that keeping a diary for one month can help you and your doctor get more from your consultation. Use the diary to: - track the frequency of your headaches, the treatments used and how effective they were for you - understand your headache experience including symptoms and triggers - be better prepared to discuss your headache with your health professional. Types of headache: Headache is one of the most common reasons for visits to GPs. There are many types of headache, of which tension-type headache is the most common. Other types include migraine and cluster headache. Headache has many triggers and causes, ranging from lifestyle factors such as sleep deprivation, dehydration and food sensitivities to mental and physical health issues. Most of the time there is no serious underlying condition. Investigation — such as blood tests or scans — is rarely helpful, even in the case of long-term headache. Your doctor will consider the possible causes and will usually make a diagnosis based on a good understanding of your symptoms, headache history, medical history and an examination. Describing your headache accurately can help you and your doctor understand the type of headache you have. Headaches can have many different features such as a throbbing sensation, tightness around the head, varying with movement or exertion, and may differ in the location of the pain (one-sided, both sides, or all over), as well as frequency, intensity and duration. Some headaches are accompanied by nausea or sensitivity to light or noise. Always seek medical advice if you have concerns about your headache, especially for pain that is severe, new, or different to pain you have had before, increasing in intensity or frequency, or is accompanied by other symptoms.

Other printable Headache diaries:

The best one I've found, with no mucking around, no booklet, simple columns to write in when your head is hurting (or after):

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

A more comprehensive version, but these chew a lot of paper and ink, if you have multiple attacks often:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As a detailed oral patient history is the only available diagnostic tool (there are no confirmatory tests for CH) these diaries have helped many, many people and their Doctors to home in on exact headache types, for correct, prompt differential diagnosis and treatment.

Been using these resources to help CH patients for years.
Maybe we can make a "Headache Diary" sticky Guiseppi?

Depressing to fill in and see the documented misery stacked in a heap, yes I understand. But Headache Diaries can be one of the most liberating things when working with the right practitioner who uses your collected data to reach a prompt diagnosis and treatment plan. The number of people empowered by having a stack of these under their arm, when confronting dismissive, or doubting Doctors has been immense. It's sometimes, the only evidence they have for their Headache condition.

Hope this helps.

Cheers, Ben.

I just wanted to say you'se guys (or all ya'll) are amazing!

I agree would have been lost without this forum and the kindness of others ;)

wrote on Mar 11^th, 2014 at 3:59am:

I've found the "There's an app for that" approach to headache diaries frustrating. Peering into a smartphone with CH attack is not so easy, or very smart of the app designers..

I can barely hold a pen and paper when I'm in a attack.  I am able to quickly jot down start/end time, and treatment start time, severity is pretty easy to remember.  Then I add them to my app later, works very well saves me from having to carry a log book to the neuro.  The designer of the app I use suffers from clusters, I think he understands what we go through.  :D  Works smashingly!

No worries Jason,

Whatever works for you.
I note that the good old pen and paper still feature in the process of collecting data. An app is good for later collating of data and showing trends, if it has those features.

The original poster asked for headache diaries, OUCH had none left, I provided links. For some of us, the trusty ol' pen and paper still works best. Here's yet another take on the paper diary: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Interesting, I went to Headache Australia, because they had a good app, now it redirects to the apple store...no more app. oh well.

The "whump" sound, I've found, of a ream of headache diaries hitting a specialists desk seems to have the desired impact...of course you can always hit your specialist over the head with a thick paper diary, if he ain't listening. ::)

I find the paper one to be low emissions, recyclable, reliable, battery never goes flat, never rings in the middle of a CH attack etc.

Cheers, Ben.

wrote on Mar 12^th, 2014 at 12:22am:

The "whump" sound, I've found, of a ream of headache diaries hitting a specialists desk seems to have the desired impact...of course you can always hit your specialist over the head with a thick paper diary, if he ain't listening. ::)

Never thought of it this way  ;D.  I've had more than a few neuro's I would've liked to clobber.

Ain't that the truth?

Thanks Jason!

Apps or papers, whatever ways we can tune these Doctors in is good for all CHers.

(Forgive my lack of app experience here...)
Have you got any links there for those who may like to try an app?

I know I would have used one for all those attacks I used to suffer when out and about in public. Those attacks usually never made it into my diaries, memory recall of 4-6 a day for 10 months is not good. Back then, long before apps, there was no other way.

Still, I say diaries are bloody useless for the diagnosed, long-term, chronic CH veterans, just good for newbies to have their headache type correctly, quickly and differentially diagnosed. After that, well they're just a document of accumulated misery. Best avoided for one's own sanity, as per Bob's pain vs suffering, I think. He's spot on with that separation, which diaries do not help to achieve. The more distance I get from having articulate every attack in exquisite detail, the less I "suffer", for sure.

I stopped keeping them years ago, but somewhere I have a stack of 7 years worth I used to support my diagnosis (and club Neuros with), I would hate to stumble across them...ugh...

I did keep a diary for the sake of the D3 regimen for a while.
I felt Batch should have his work done justice and that I should have been able to provide accurate data to the survey, which I did.

Cheers, Ben.

wrote on Mar 14^th, 2014 at 2:38am:

Still, I say diaries are bloody useless for the diagnosed, long-term, chronic CH veterans, just good for newbies to have their headache type correctly, quickly and differentially diagnosed. After that, well they're just a document of accumulated misery. Best avoided for one's own sanity, as per Bob's pain vs suffering, I think. He's spot on with that separation, which diaries do not help to achieve. The more distance I get from having articulate every attack in exquisite detail, the less I "suffer", for sure.

This pretty much sums up my feeling about keeping logs too.  I fought it for a long time because I couldn't focus enough to log an attack during an attack and after I just wanted nothing to do with them at all.

I started again recently because I'm going to a new neuro and she's really been pressing me for one and I get to the point sometimes where I say "I have to give these people what they want or else they won't think I'm willing to try anything to help myself".  Which means they aren't as willing to help either.

However, with this last iteration of my cluster journal, I realized at my neuro that it was able to give me some solace.  See I have the misfortune of remembering things at times as being worse than they are.  You ask me how many times last month I got a headache, I tell you everyday and I honestley believe it.  As I was looking through my journal though I noticed I wasn't getting them everyday and the neuro was even able to point out some patterns as they may have related to new courses of medications.  So there can be some hope in those damned journals.

Anyway if anyone is intersted, this is the app I use START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. ; I think it does a pretty good job.