Since I'm newly diagnosed with CH I'm trying to keep a good headache diary to show my doctor next week. I'm not exactly sure what all I should include though. Any advice?

                                                                                        example

1.Day                                                                                                                              
                                         [2a. medicine                          
2.Basic preventative therapy [2b. dosage                              
                                         [2c.numberofdosages                        

                                                        [3a. medicine
3.Rescue/abortive medicines/measures [3b. dosage
                                                         [3c. number of dosage

4.Kip scale 1-10

 
5.Duration of pain

6.Phone/visit
doctor/E.R.

7.Activity before/during getting hit
                                         



this is what has worked for me in the past.
sorry for putting this vertically.it is supposed to be horizontally but not enough space helps do the trick.So every number it's a collumn with its sub collumn/category.hope this helps somehow. ::)

Thank you that helps a alot. So far I'm on the right track. The only think on your list I cant really do is the medication part. I'm not on anything except hydrocodone and ibuprofen yet because my doctor doesn't know a whole lot about the condition and when I was diagnosed I didnt either. Which is why I've made a new appointment and I'm trying to keep track with a headache diary.

Hey there,

I was diagnosed with CH in October 08.   - am just going thru my 3rd cycle.  I have had migraines for 5 years, however and am not new to tracking though it is a bit different without the huge list of food triggers possible for migraines.

There is a diary format at the bottom of this OUCH website, along with some other useful links:

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"OUCH Headache Diary - 69kb .pdf file - Use this form to track your headaches and the effectiveness of your treatments."

There are so many out there however -

Just checked a few other diaries I have saved.  time of occurrence, duration, and intensity are important.  location in the head is important - where in your head... on one side or both, etc.  Type of pain - throbbing, pounding, splitting, steady ache, sharp pain, dull ache, blinding?
How the headache impacts you also - do you sleep, pace, etc? What did you try to combat the pain? Ice? Med? were they effective? how effective?  Did the pain return?  Were there any other symptoms besides the direct pain - nausea, sensitivity to light, sensitive scalp, etc?

There are so many things that can be tracked that would help a doc help you.   :P  Your ability/ inability to function with the headaches explained to a doc might also impact their want to help you, so this might be something that you try to get across if CH is impacting your life in a great way, as I know it did mine until I got it under "control".

Hope this helps some.   :D

Val

By the way... This was posted for recording Cluster levels by another CH.com member Artonio -

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Val_ wrote on Jun 3^rd, 2009 at 6:04pm:

How the headache impacts you also - do you sleep, pace, etc? What did you try to combat the pain? Ice? Med? were they effective? how effective?  Did the pain return?  Were there any other symptoms besides the direct pain - nausea, sensitivity to light, sensitive scalp, etc?

All good stuff from the other replies. I can heartily endorse the relating to your Doc how these things are affecting your life.

While they may not receive training in treating "headache", and do NOT understand the debilitating effects of ch (it's ONLY a headache, sheesh)...they are apparently well versed in "how is this condition affecting your life?". Nearly every Doc has asked me that question,
and I've opened a few eyes with my replies. THAT, they get...

The other one is the "pain" scale...I despise the "smiley face...frowny face ones...always just cross out and put in a dang number...but they get that one too.

Perhaps an analogy here...don't know...but I'll give it a try. Recently, a colleague asked me why I was so successful with governmental regulatory agencies (part of my job). Now that one is easy...first, being upfront and honest (they're not used to that) THEN, speaking their language... learn it, use it appropriately, and they think you know what you are talking about...same with Docs...give 'em what they want (or know) and you got a better chance...

AND, this I learned from the National Headache Foundation...keeping a diary of headaches is a SIGN of ch...we are compulsive, or desperate, or whatever, but we do keep diaries....an enlightened Doc will recognize that...

Best,

Jon

Well so far I'm doing good I think. I have the past two weeks in my diary and I have what times and dates, Level of pain, How long they last, the characteristics of it, what meds I take and how they effect me, what i was doing before I got the attack, and what Ive ate and drank before I got it. I've printed off probably about 120 pages of information on CH and I've read through everything and i'm pretty sure I understand it all.

However I do believe my headaches are getting worse. For the last 6 or 7 months I've only gotten one a day everyday real bad. But in just the last week alone theres been a couple times I've gotten two a day and as bad as a level 9 and today I got 3 that reached up to a 6 or 7. I'm really not sure why it would start getting worse but I've been keeping track and All of them are still int he time frame I've always gotten them but theres just more than normal. Could it be because I'm not on any current treatment for CH?

Mine started out as annoying headaches, always behind my eye, always on the same side. Each year they'd get worse. They didn't become the real butt kickers until my late teens early 20's. Back then I could gut it out with lots of aspirin. Shudder to think what I was doing to my poor tummy back then!

My point being, for me they continued to get more painful. A decent preventative medication will go a long way towards making your day to day life more bearable. You're doing all the right things, getting the referral to the neuro, the diary. Wishing you luck with the doc!

Joe

Thank you very much that helps alot. I've been having these headaches for as long as I can remember but they've been getting worse over the last couple years. I didnt bother to go to the doctor till I had them everyday for atleast 4 months. I did the same thing with the lots of asprin. I would take atleast 4 at a time when I was younger to get my headaches to go away. Then a few years ago I started taking Hydrocodone for them and now thats not working anymore.

Not being on any treatment can cause them to sort of lurk in the background all day (the 0-3 shadows), coming out to play sveral times per day. Or it could be this is just a wierd cycle. I have been having clusters around 30 years and sometime mine will be once perday.

This cycle is more unpredictable. I got woke up about every hour and 15 minutes last night. Luckily I have O2 so none of them were bad.

A word of caustion about your current meds. Hydrocodone is codiene plus acetominophen. And you mentioned you are also taking acetominophen. Too much isn't a good thing for your kidneys.

When is your next Dr appointlemt? Hopefully you can get O2 and verapamil or something else that works.

Actually I was tryign to say that I took all that asprin when I was much younger and then the hydrocodone started a few years ago but now I'm taking absolutely nothign for it cause none of that helps me at all. I called today and made an appointment for Tuesday. The doctor told me last time that if I need to come back he's goign to refer me to a neuro so I'm thinking thats what he's going to do. I have tons of info on all the treatments available and I'm taking that with the diary in to talk with him about so I'm hoping to be on a treatment soon.

Oh! But today one of my headaches was only about a 3-4 so I tried what someone said and drank an energy drink. It didnt take it away but it took some of the pain away a little!

Sorry, I misunderstood about the meds you tried before. Yep they don't work for CH.

What works fairly well when I don't have meds or don't want to use up another Imitrex injection... is very strong coffee. I keep a jar of Folgers instant crystals around for this. A coffee cup about half full of water nuked for 45 seconds (I don't want it too hot) and a heaping tablespoon of the Folgers. Tastes like crap but I don't care in the middle of a Kip 6 or 7.

I think I'll try to keep energy drinks around. Caffine doesnt really wake me up a whole lot. Normally I get tired when i drink it. So I can have it at any time of the day. But Coffee I cant stand to even take a sip of it. The taste makes me sick.

Hi Casey,
a headache diary was what helped with my Dr also try to keep a list of all your symptoms eg:- red eye, tearing, blocked nose etc your Dr will probably refer you to an Neurologist and you will more than likely have a series of tests to make sure theres no other cause. its a long road but your going in the right direction.
some people use heat or cold to help with the pain. I use an ice gel pack wich i press on the side of my head and on my neck wich helps me alot to control the little devil, you can also use for eg frozen peas basically anything in the freezer but wrap it up in a towel first and use it as soon as you feel the beast rising.

wishing you lots of pain free days and nights

Mark (i came to visit but ended up staying)

Mark (i came to visit but ended up staying)

And we're a finer place as a result!!! ;)

Joe

Quote:

And we're a finer place as a result!!!

geee thanks joe  :'( :'( :'( im choking up

mark (feeling very wanted ;))

McGee wrote on Jun 4^th, 2009 at 6:38am:

Quote: And we're a finer place as a result!!! geee thanks joe  :'( :'( :'( im choking up mark (feeling very wanted ;))

Don't get too excited.  It's the animated GIF he's really enjoying.  It reminds him of a lap dance he had once  ;)

-Dennis- (who is going off to hide from the long arm of the law)

thats ok thats the wife ROFLMA

mark (get into trouble for that one)

Here are 2 links to a CH diary, the first in word format, the second in pdf.

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The cover page in both is self explanatory.

Warning:   ;)

This is very extensive diary which takes into account both primary and secondary symptoms along with the frequency, intensity and duration of each individual attack and the duration of the CH period (if episodic) and your medication use, both preventative and abortive.

It IS a lot of work.  The data you collect will give you a much better understanding of your particular pattern and also very clear picture of your head pain if you chose to share it with your Doctor.

Give it a try.

Regards.

Doug

So I went back to the doctor today and he gave me more hydrocodone and gave me some midran to try. He also referred me to a neuro but I have to wait a couple weeks for it to go through the insurance and then they will tell me which doctors I can see. Just giving an update!

You should also add everything you eat & drink. Many of us have foods or drinks that trigger a headache.

I know you doctor is trying to help but hydrocodone and Midrin aren't going to cut it for cluster headaches.

Many insurance company websites allow you search for specialists that are covered by your plan. Choose one, call and make the appointment even if your insurance has not yet approved the referral. You can cancel the appointment if insurance doeesn't approve it (or you cannot pay); but by making the appointment now... you will be a couple of weeks ahead.

If the neurologist's office wants to give an appointment one or two months from now, don't accept that. Tell them you are in the middle of a cluster headache cycle and need to be seen this week.

i know i havent been on here in a couple weeks but have you tried to get o2 to abort while your working out your meds with your doctor?

as far as keeping record i used to write down what i eat and drink and the time. my attacks never followed any kind of schedule but they did follow certain types of foods especially nitrates. i would also get attacked when i came in out of the cold and into a warm dry house. i could work for a few hours chopping wood or tarping down a load and be fine most of the day. as soon as i got in the cab of the truck and started to drive i would get hit which is a pain in the ass cuz thats what i do for a living.    

Please look into o2....odds are it will save yourself from unnecessary pain!

Dairies are fine. Abortives that work are better.