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        New Message Board Archives >> February 2002 >> I'm a newcomer to cluster headaches!
        
(Message started by: Libby on Mar 24^th, 2002, 12:59pm)

Title: I'm a newcomer to cluster headaches!
Post by Libby on Mar 24^th, 2002, 12:59pm

I am 23, a newlywed, and suffered from my first episode of cluster headaches three weeks ago and I have been living a nightmare ever since...my family and husband think I am crazy!!! I was on Inderal but the side effects were unbearable...now I just stared Topamax...I am out in left field trying to muddle through school and work---I am about ready to fall apart--I really like my neurologist, but I this is overtaking my life like I never imagined, and I want answers and relief pronto---people keep saying---"they are just headaches" and I want to slap them---that would make me feel better!

Title: Re: I'm a newcomer to cluster headaches!
Post by SneakinAround on Mar 25^th, 2002, 1:21pm

Hi Libby,

I just saw your post, and I know exactly what you are saying. I've been dealing with these hellish things for 25 years now, periodic/episodic. Yes...they do take over your life, and in ways that you are just beginning to discover.

To everybody that has said to us clusterheads:
"Get a grip fer crissakes! It's just a headache."
or called us crybabies and talked trash behind our backs,
I'd like for these people to have one...just one 3 AM
floor-crawlin, hair pullin, screamin' wallbanger. Let it
hang on for about 45 minutes or an hour so they can
get the full effect...and the aftermath of same.

You may find some relief in these methods. They work for me, and will stop a headache about 7 times in ten.

Get on your knees beside a bed in a darkened room.
Lay your head down on folded arms, but leave space
under your face for air. As hard and as fast as you
can, hyperventilate yourself until you begin to feel your face and fingers tingle...You will be just to the point of
passing out. Now, take slow, deep breaths and relax
as completely as you can. It will be easy to stop breathing due to the oxygen glut in your blood, but
KEEP BREATHING. The secret is to let your O2/ CO2
levels return to normal slowly. When the tingling and
dizziness fade, the headache usually goes with it.

This is a pretty good method for aborting a headache
in progress...such as the ones that snap you awake
in the middle of the night.

Another one is the water method as outlined in another
place on this website. Drinking lots of water often cuts
the frequency, duration, and intensity of my headaches.
This is a good one to try just as you feel a headache start to take over...during what I call "The 2-minute warning"...Drink two or three glasses of water and
try to relax and take slow, deep breaths. I have
shortened my usual 45 minute headaches to 15 minutes
by doing this.

You can also get some relief during an attack by putting
pressure on both carotid arteries for a few seconds.
Locate the arteries on either side of your larnyx. The
strong pulse that you feel is the spot. Put pressure
on both sides at the same time...until you feel pressure
in your head, and release. Repeat as soon as the pain
starts to build again...I have actually stopped some
attacks in as little as 3 minutes by doing this

You may get some understanding from friends and family
by describing a cluster headache this way:

Think of the worst "Ice-Cream" headache that you have ever had...The kind that hits when you eat something cold too fast...The kind that hits between your eyes and
takes your breath for a few seconds...Now multiply
that pain by about 10, spread it over half your head...and keep it for an hour. That's
about as close as I can come to describing it

May your last cluster be your LAST cluster...
God help us all,

Johnny TravisPickerNC@outdrs.net

Title: Re: I'm a newcomer to cluster headaches!
Post by DCgirl on Apr 6^th, 2002, 1:36pm

Thank god for the internet! Just to know that there are other sufferers out there going through the same night mare.. makes me feel better (Strange but true). I have had cluster headaches for close to 9 years and have only had four attacks that last anywhere from two to three weeks. I am currently going through my fifth bout and definitely forgot just how bad it is... Now with a toddler and an infant, it seems like I can't function.. My husband has absolutely no clue what I am going through. I am in my own private pain and he thinks I am hormonal with a nagging headache. When I talked to my neurologist, he told me this affected men much more than women. For all the women out there with this, how many have support from their husband? I have asked him to read some of the information on this web site to educate himself as to what I am going through but he seems disinterested. I had a flare up at 10:45pm, 2:30am, and then 4:30am... I am coming off my prednisone and am still taking depakote and have an oxygen tank in my bedroom. I don't know which is worse... the CH or the fact that my husband thinks I am over reacting. Have any advice for me?

Title: Re: I'm a newcomer to cluster headaches!
Post by kim on Apr 6^th, 2002, 2:42pm

Hi DCGirl,
I read your post and remember how difficult it is to have babies to care for while so debilitated. Your neuro gave you zip by telling you statistics which will do nothing to get you through this time. What a jerk! Who cares about men/women ratio when having such acute illness?
I sincerely hope that your husband will acknowledge your needs and be there to hold the fort and offer whatever you need. He needs to know that it's IMPORTANT.
Try printing out some info and giving it to him. I wish you luck and painless days, dear! Smiles, Kim