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        Cluster Headache Help and Support >> Cluster Headache Specific >> Lost
        
(Message started by: Meela on Sep 26^th, 2006, 12:54am)

Title: Lost
Post by Meela on Sep 26^th, 2006, 12:54am

Hey all,

I found this site while doing some research into these bloody headaches that I've been getting for the last 6 weeks. I've been told it was stress, but I've never been a stressed person. I was told it's a sinus infection, x-ray showed clear but still took 2 weeks worth of anti-biotics, no diff in headache. Told it may be high blood pressure related, the doc and I are still working on this one. All I know for sure is this is darn hard to deal with. I was a migraine sufferer in my early 20's and I'd gladly take a migraine over this "beast" as it's referred to.

I'm still not sure if I am a CH sufferer as I don't seem to have all the symptoms mainly the "wanna bash my head against the wall" pain. I usually just curl up in a ball, rock myself and cry like a baby till it's bearable again.

The most intense part doesn't last for more than 5-10 mins. But they recur about hourly in the day and 3-4 times an hour at night. OTC drugs help a bit, a few Advil and 4-5 T1's every 4-6 hours, but after weeks of this I starting to get concerned about health risks and dependancies.

I guess what I want to know is if these headaches can start out not-so-bad and progressively get worse over the years, will they ever go away... I just don't know what to do.

I have an appointment with my doctor in the morning and was wondering what questions I should be asking to get to the bottom of this ASAP.

I'm sorry if these questions have been answered in other posts after days and days online researching CH's I'm feeling more lost then when I started.

Thanks for taking the time to read,
Kelsey

Title: Re: Lost
Post by BB on Sep 26^th, 2006, 1:00am

on 09/26/06 at 00:54:53, Meela wrote:

Hey all,

The most intense part doesn't last for more than 5-10 mins. But they recur about hourly in the day and 3-4 times an hour at night. OTC drugs help a bit, a few Advil and 4-5 T1's every 4-6 hours,

I'm sorry if these questions have been answered in other posts after days and days online researching CH's I'm feeling more lost then when I started.

Thanks for taking the time to read,
Kelsey

Hi Kelsey,

Sorry to hear you have these terrible headaches but what you are describing here doesnt sound like classical cluster. Do you get any pain behind the eye and does the pain affect both sides or one side of the head?

It sounds like you may have something different but related to cluster such as hemicrania continua or paroxysmal hemicrania or even trigeminal neuralgia.

Please take the time to read the symptoms of CH on the left side of the Board and take the quiz.

Also get your GP to refer to a neurologist who is familiar with headaches to get the correct diagnosis. That is the most important step.

Take care and good luck with it all. Painfree wishes to you.

Annette

Title: Re: Lost
Post by Meela on Sep 26^th, 2006, 1:18am

Thank you for the quick reply Annette,

And yes the pain is only on the right side and is behind the eye but has progressed to the right ear area also, kind of like a numbness, that's why I am not sure what's up.

I have an appoint with my GP tomorrow and will insist on a referral to a neuro for a proper diagnosis. I will be looking up hemicrania continua, paroxysmal hemicrania and trigeminal neuralgia tonight, mainly cause I don't think I'll be able to sleep till I know what they are, lol.

Again thank you for the quick reply and painfree wishes to you and all pain sufferers.

Kelsey

Title: Re: Lost
Post by Charlotte on Sep 26^th, 2006, 1:23am

Welcome aboard, Kelsey. Sorry for the reason you had to find us, but please check back in and let us know how you're doing and how the dr visit went.

we can have more than one type of headache going on at the same time.

Ask your dr for a trial of Indomethacin for the hourly pains. At least 50 mg 3 times daily, or 75 mg twice daily. It is available in a time release form which is easier on the stomach, but you have to be careful like with all other NSAIDS. Indomethacin is the one that sometimes works for these and 150 mg daily may be a smaller amount that the other NSAIDS you're taking. It is easing my pain, but not preventing it. I have a non-category headache similar to cluster & paroxysmal hemicrania. (I also use kudzu & neurontin for other symptoms, & ice, red bull, & sometimes 1/4 maxalt melt tabs.)

Have you jotted down at least one or two descriptions of a hit that you can show your dr. Do you have pain free time in between the multple night hits or does it dull down and then flare back up?

How are the day hits different and the same as the night hits?

Do you see a migraine also occurring and if so, how often. Do the migraines accompany the harder hits, more frequent hits, or occur at random.

Good luck, Kelsey.

Charlotte

Title: Re: Lost
Post by Bob_Johnson on Sep 26^th, 2006, 7:12am

Not unsual for symptoms to evolve/change over time and not everyone has all of them (listed in the diagnosis criteria).

As for how long the disorder lasts? No way of telling: ranges from one time to decades. But first, put your attention into getting a good diagnosis and then learning about whatever kind of headache issue you have. Start with buttons on the left.

Title: Re: Lost
Post by Jobette on Sep 26^th, 2006, 8:50am

If you are having BAD headaches I have found that clusterville can prove just as good a place to be as any hospital. At least they can TRY a direct you to the right place. ::) There is always good advice to be found here. Take the cluster quiz and read about the traits of a cluster, because they are different than other headaches, they have a totally different trait of their own. I hope that you are not one of us, but if you FIND that you are we are here for you. Good luck!! :-*

Title: Re: Lost
Post by Meela on Sep 26^th, 2006, 11:19am

Thanks for the replies folks, it's nice to know there are peeps I can talk to about this bloody headache that won't roll their eyes at me and say, "It's just a headache, get over it". There are times that I'd love nothing more than to drive an icepick through their eye, smile at them and say, "Ahh, does that hurt? Get over it".

I'm scr3wed when it comes to most anti-inflamitories, ecspecially the NSAIDS, causes interstinal bleeding. I'm sure everyone knows this but I need to say it, please be careful with the NSAIDS, they almost did me in.

I will start logging my headaches, don't know why I didn't think of it before.

Thanks for the replies and advice,
Kelsey

Title: Re: Lost
Post by Meela on Sep 26^th, 2006, 1:33pm

Just got back from the doctor. She's not sure what's up but is very concerned. She gave me a shot of Demerol to see if it helps at all, it's been an hour and the shot doesn't seem to be helping much just kinda takes the edge off the headache. She suspects that it may be my migraines starting again or something wrong with the nerves behind my eye. At least she didn't brush me off like the ER docs have done. Again thanks for the replies and painfree wishes to you all.

Kelsey

Title: Re: Lost
Post by seasonalboomer on Sep 26^th, 2006, 1:39pm

did she get you a referral to a nuero to look into things further?