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Keeping a journal for diagnosis.. (Read 1954 times)
monark
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Keeping a journal for diagnosis..
Jan 7th, 2015 at 3:08am
 
Hey guys...

Woken from sleep tonight... Terrible pain behind my eye. This is around day 5 or so. The first night changed my life. I've never felt pain like this before.. Ever.

Tried to tell my wife. She wasn't able to relate. The first night I had suicidal thoughts it was so rough, and I'm a pretty upbeat guy... When I told my wife, she of course didn't understand...

I fortunately found this site the morning after the first head ache..

So what I'm doing is making a journal that I can show a doctor, to prove without a shadow of a doubt that I am suffering from a specific illnes... What data should I focus on the most to get a doctor whom I have no history with understand that what I am facing is real and really hurts and needs attention ASAP?

I don't want to just tell the guy "It hurt so bad one night, I almost killed myself" because that's not true.. I just reached my limit on pain... I actually just cried out for mercy..

Glad I found this site..
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AussieBrian
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Re: Keeping a journal for diagnosis..
Reply #1 - Jan 7th, 2015 at 3:38am
 
One headache a cluster do not make. That said, all headaches are horrible and must be checked out by a doctor.

A headache journal is a terrific start. Write down when it starts, when it finishes, and how you felt while it was happening.

On the left of your screen is a button for our Kip scale of pain which might help with your descriptions.

List any possible triggers. This could be food, weather, flowers, stress, or even allergies.

Importantly, keep in touch so we can help.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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BobG
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Re: Keeping a journal for diagnosis..
Reply #2 - Jan 7th, 2015 at 3:53am
 
First, try not to diagnose yourself.
Keeping a journal is a smart move. Note the location of the pain. What have you eaten/drank in the hours before to attack. What time of day/night. How long did the pain last. What were you doing at the time of attack..sleeping, running, watching TV or computer, at work or home. What was the weather, high or low pressure, cold/hot, rain/clear, windy.
On he left side of your screen is a button 'cluster quiz'. Take the quiz and let us know the results.
There are other headache types that mimic clusters. Talk to your doctor about referring you to a neurologist with headache experience.
If you do indeed have cluster headaches you came to the right place. Lots a good info here.
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Stay stressed. Never relax. Never sleep. Ever.
 
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monark
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Re: Keeping a journal for diagnosis..
Reply #3 - Jan 7th, 2015 at 8:36pm
 
I certainly do not want to self diagnose, especially not diagnose myself with a cluster headache. However, this is no migraine here...
As for the cluster quiz, the only thing that differentiates me is that at times I'm in so much pain I get nauseous.
I used to have a night time job, around 8 years ago, and I thought that sleeping during the day was giving me these terrible head aches... However, this same familiar head ache from then is back with a vengeance. It's still on a tight schedule too...
I appreciate the tips on a journal, and will definitely be putting them into practice.... It's 7:35pm here, I got roughly three hours of sleep last night and am intending to go to sleep early tonight... maybe I can catch a few ZZZzzz's before it slams me...
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Re: Keeping a journal for diagnosis..
Reply #4 - Jan 17th, 2015 at 2:26pm
 
Keeping a journal is a great idea. It may seem extensive but I also recommend keeping a log of possible triggers. When you ate  and what time. Really helps pinpoint different  foods and if they are triggers.
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Traveller
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Re: Keeping a journal for diagnosis..
Reply #5 - Jan 18th, 2015 at 2:26pm
 
Once you get under treatment you will find a journal to be essential as you and your Neuro work through various cycles and combinations of medications.  Eventually you will hit on something that will work, and journal will help the doc figure out exactly what medications are having the greatest effect.
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metoo
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Re: Keeping a journal for diagnosis..
Reply #6 - Jan 18th, 2015 at 8:15pm
 
Hey, Monark,

I'm glad you've found this site, too.  Many flounder around in the medical system for a long time before receiving the correct diagnosis.  Having received a correct dx, if indeed you do have CH, prepare for disappointment.  There is little in the known medical universe regarding treatment.  You might be hearing from Batch soon regarding a regimen of supplementation that has help a lot of CH sufferers.  In the meantime, the oxygen treatment listed to the left offers a great many of us abortive relief.  There are a couple of medications (quite expensive) that are useful for many.

Those thoughts, of course, put the cart before the horse.  To your question specifically, there are some 'tells' relative to CH.  When you do see your doctor, it is important to be able to express the principal information in one breathe, as it is the hallmark of the medical provider to shorten the initial visit by recommending testing.  That is not a bad thing, but it does put the sufferer in a loop that may not be as productive as one would like.  So.....here are some of the things which might break through during the initial visit.    Believe it or not, many providers will appreciate the information that can be gleaned in the one minute it takes to read the patient's recollection.  Keep the journal for yourself, or if it is requested by the provider.

If you have any of these symptoms, write them down before going in:
pain is only on one side
your eye tears on the painful side
you have nasal drip on the painful side
you have tooth pain on the painful side
you have a tendency to move about during an event
your head hurts to touch on the involved side, not the other
your pain is the most severe pain you've ever had
your pain passed almost as quickly as it started
your pain lasts a certain amt of time, say 60-90 min


These are not all of the symptoms by any stretch, but they will likely get the doc into an algorithm which will shorten the dx time.  It is OK to wonder aloud about the possibility of having cluster headaches.  Some providers are sensitive about patient self-diagnosis, so it is advisable to be quite humble at this stage.

If you do mention the fact that you thought about harming yourself, that dx will take precedence over any other.

Keep coming back here.  These people are amazing, and you will learn as much about CH here as there is to know.

Take care, and my best to you.

TJ
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BobG
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Re: Keeping a journal for diagnosis..
Reply #7 - Jan 18th, 2015 at 8:26pm
 
Keeping a journal can be interesting to read at the end of each year. You'll probably find entries you've forgotten and will make you go "Jeez, did that really happen to me?"
I recently went through mine and found I had had 241 individual cluster headaches in 2014. That's good news. It's 12 less than the year before.  Smiley
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Stay stressed. Never relax. Never sleep. Ever.
 
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