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Title: I'm a newcomer to cluster headaches! Post by Libby on Mar 24th, 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! |
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Title: Re: I'm a newcomer to cluster headaches! Post by SneakinAround on Mar 25th, 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 |
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Title: Re: I'm a newcomer to cluster headaches! Post by DCgirl on Apr 6th, 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? |
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Title: Re: I'm a newcomer to cluster headaches! Post by kim on Apr 6th, 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 |
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