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Topic: Will it Ever End? (Read 358 times) |
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msgq
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Will it Ever End?
« on: Sep 28th, 2004, 5:35am » |
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I'm new at this. I learned about this website from my husband who is the cluster headache sufferer. We have gotten information here.
Tonight, this AM, I write because I don't know what to do. We thought we were through it. The doc changed his med's to Lithium, they have backed off. Tonight was the worst I have seen it. The imitrex injection didn't work. He sat in the cold shower crying. He vomitted for an hour. 1 1/2 hours later, on the verge of emergency room, it left. He's never been this bad.
What do I do? Our marriage is stressed -- very stressed. We just found out his mom is dying of cancer - 2 - 3 months to live. We have 14 month old son. He's, my husband, trying to start his own business, so he quit his job to build it. And now, these stinkin' headaches won't leave him alone. (They said 6-8 week cycles -- it's 8 weeks today.)
We have 3 injections left. After that, we have no money to buy more. The Neurologist? Very distant. "Yup, cluster headaches, classic case. Take your drugs. Call if you need anything." That's the extent of it.
I've learned that I can't do anything. But if one more person asks me, "why don't you get him some help?" I think I'll strangle them. They have no idea.
I'm venting. I know.
Thanks for listening.
Kathy
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Ree
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Re: Will it Ever End?
« Reply #1 on: Sep 28th, 2004, 8:29am » |
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Hi ((((Kathy)))) big big hug to you... by being here you are getting help for your dear husband. We all have that same story. Watching my husband suffer is the worse thing that I do in my life and that is why I have dedicated myself to this site. Has he tried O2. We have had those exact moments when it seems like he will die from an attack. Now that Dave has 02 it helps him to at least sit still and focus on breathing. We all have a tendancy to tense up and I imagine they tense up terribly with these. The 02 helps. It is cheap. Its worth a try. Also let us know if you run out of meds. There are always a few Imatrex injections hanging around and the doc probably has samples for you. If not tell him to get some. We walk out of our docs with a shopping bag full sometimes. God bless your sincere heart and hang in there. When my husband gets this bad they are usually going to taper off... There is a peak that Dave reaches where nothing works and then they get a little less severe and he gets less attacks every day. If there is anything I can do please let me know or IM me or email... Ree16angel@aol.com Sorry for your problems...Not to steal your thunder but my hubbys mom has Alzheimers and I have a home based business because of his Clusters. His worse cycle lasted 7 months. We are in the same boat... grab a paddle and ROW......... DONT LET IT BEAT YOU AND BELIEVE THAT IT WILL END... I PROMISE IT WILL.......... Love and prayers to you... Ree
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Jackie
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Re: Will it Ever End?
« Reply #2 on: Sep 28th, 2004, 9:37am » |
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Hi Kathy,
Bless your heart. Your plate is really full right now. I'm married to a clusterhead too so I can relate. The helpless feeling is terrible. Hang in there, Sweetie, it does get better.....I promise. Also, it sometimes seems that the HAs are at their very worst right before remission.
Ree has given you some very good advice...especially about the oxygen. It is the favorite abortive of many with the least side effects. It's worth a try.
Keep us posted on how you all are doing.....we're here to help.
Jacks 
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Margi
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Re: Will it Ever End?
« Reply #3 on: Sep 28th, 2004, 10:09am » |
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Hi Kathy,
Well, you've gotten advice from two of the best supporters here - and great advice it is. Of particular importance is what Ree said - that it's very common for this to ramp up to incredible levels before it leaves for good. It's kind of like the Beast gives them one final ass kicking before it leaves, just to "remind" them that IT wants to be master. 
My hubby, too, is a clusterhead and has been for twenty-mumblemumble years now - episodic with 2 year remissions and 6 month cycles at this stage. Yes, it's brutal and it really does rob us all of quality of life. Oxygen has really been a Godsend for us and has allowed my husband to learn how to stay as calm as possible during an attack. It forces them to sit quietly and breathe evenly. THAT has been huge in Mike's defense plan. If he lets himself get upset, his blood pressure elevates and so does the pain.
You say he's on lithium now? What dosage, do you know? Sometimes, combining lithium with verapamil can be what finally kicks the beast out the door. You should let the doc know of this last attack - it could be his body adjusting to the lithium and he should be getting regular blood tests while on it to make sure it isn't changing his chemistry in a bad way (it can affect liver and kidney function). Vomiting isn't all that common and can be a result of med intolerance. I'd sure let the neuro know that this has happened. Maybe dosage needs to be adjusted?
Please do keep talking, Kathy - it really does help. And, don't forget to find some time for yourself. It's real easy for a supporter to succumb to cluster stress and it's imperative that we stay strong ourselves so that we can be strong for them. Even if you just find 20 minutes to yourself, it can work wonders to recharge your batteries.
BIG hugs,
Margi
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cathy
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Re: Will it Ever End?
« Reply #4 on: Sep 28th, 2004, 5:06pm » |
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Kathy im also married to a clusterhead, we all know how your feeling and we all feel your sadness....sometimes it's just enough to know that your not the only one and that if nothing else you can vent and be truely understood. Likes been said here sometimes they peak as they are about to tail off I hope this is the case for your husband....in the meantime carry on venting and we will all help to carry you and your husband through this time....hugs to you and welcome...
Cathy (with a c) 
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miapet
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Re: Will it Ever End?
« Reply #5 on: Sep 28th, 2004, 6:24pm » |
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Kathy,
You've heard from some of THEE best supporters here! When I came here about 8 months ago, I was exactly where you are. D had been a chronic sufferer for 20 years, and we were in a bad time. o2 brought his h/as into a much more 'doable' time. He went from having 40 minute h/as to having 7 minute h/as (what a relief!). If you can't get the o2 from the doc (we understand the $ and insurance issues) you can also get set up with welders o2 (oxygen is oxygen).
A couple of other things: your doc can give you sample meds, and there is also a form he/she can fill out, that will help you get meds from the manufacturer (sometimes for free!), so those are options.
Feel free to IM me, or email me: kcstayman@hotmail.com
Oh, and, as was said earlier: take care of yourself . . .and enjoy every pain free moment (this was some of the best advice I was given . . thank you Jackie *smiles*).
*positive light and energy*
miapet
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Leesa
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Re: Will it Ever End?
« Reply #6 on: Sep 30th, 2004, 8:57pm » |
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Kathy, Im a suppoter also hun, so your by no means alone in this fight. It WILL END. Youve heard from the BEST supporters out there gal. If not for them helpin me deal with CH and what to do I would be LOST big time even now after 4 yrs. This is the BEST care anywhere. Just rem. to TAKE CARE OF YOU!!! You cant fight for him but with you by his side TOGETHER yall can do amazing things and WIN!!! Keep us posted, we are here if you need us hun. Ill keep yall in my prayers.
Best wishes, Leesa 
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laz
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Re: Will it Ever End?
« Reply #7 on: Oct 5th, 2004, 3:17pm » |
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 Hi Kathy my name is Lesley and I live in England my husband is also a ch sufferer, i too have felt in the same position as you, we run a building and joinery business, so we know how hard it is for you, I have taken to reading everything on the site , I feel i want to protect my husband from anything he might read that may scare him, cause it sure as hell scares me, some of the things people have tried to get relief, god only knows what he feels himself. but it scares me, i just dont tell him, He has a friend who is a doctor , who has very kindly said he will help him anyway he can, and he is sending Tony to see a dental specialist that specialises in the facial nerves, i will inform you of the outcome, He had his most severe attack on Sunday night but has been pain free almost for one day, we dare not wish for too much , I also buy him red bull stimulating drink ,i dont know if you have it in America, but he drinks it at the onset of an attack and lots of coffee , i also buy him coffee sweets that he can suck whilst at work, he says the red bull does ease his attack if taken with his medication imigran,because it make his meds get in in stystem quicker, it may not work but will be worth a try, I feel so tired myself through lack of sleep , but thats the least of my worries, but please take some time out , just 30mins or so just for you , sit back and see just what a wonderful wife you are being, and i send you and your husband lots of love and support Lesley
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