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Topic: New here, how do you all do it? (Read 329 times) |
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renny3
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New here, how do you all do it?
« on: Mar 16th, 2004, 9:53pm » |
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This really sucks!!! My husband starting having these h/a 1 month ago, every night. I'm 99% sure they're CH, we're gonna get a referral next week for a neuro. I hate seeing my husband like this. He doesn't deserve this (as I'm sure none of you here do). Is this what I have to look forward to? Night after night seeing my husband in unbearable pain. It hit real me hard tonight, he's out of town for work and told me last night was a real rough one. And how he was dreading leaving work going to the hotel knowing what was probably going to happen later that night. I hate the thought of him going through this alone. I've been doing a lot of research and prior had no realization how debilitating this is. I don't know how you all do it. I know we'll get through this together, we have a very strong marriage. But knowing my best friend in the whole wide world is suffering is almost unbearable itself.
I guess I just need to vent to someone who understands. God Bless to everyone who goes through this. 
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firebrix
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I must never weaken.
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Re: New here, how do you all do it?
« Reply #1 on: Mar 17th, 2004, 1:09am » |
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Welcome renny3
So sorry you had to find us but also glad that you did because there is a mine of information on this site, and some very helpful people who will do all they can to help you and your husband.
How do we do it? Just like you do. We love our partners and want to help any way we can. And sure, every now and then it gets a bit rough - all we supporters hate to see our loved ones in such unbearable pain, yet bear it they do, so we must be strong and help where we can. I had to harden up a lot and I was never particularly "soft" to begin with!!
Getting really well informed by reading as much as you can on this site will help and getting a doctor and neuro who are familiar with CH and know how to treat it also helps. Down here in New Zealand, it was virtually unknown and my husband suffered at the hands of fools for a long time before we found good medical help. A lot more medical professionals are aware of CH now though, and in the USA there are some great neuros and clinics where treatment and research of CH is a priority. Sometimes we have to become our partner's advocate for they are too exhausted. Never give up!
http://www.clusterheadaches.org/medications.htm
shows meds used for CH - you'll probably want to join OUCH too!
Read about the meds used as preventatives which help many people and also about the abortives like Imitrex injections which usually stop headaches (ha.) within 6-15 minutes. Check out the Oxygen button on the left of CH.com's main screen - this treatment has helped many sufferers but must be used with a non-rebreather mask to be effective.
Let me know if I can help in any way - (just IM me) but others will come along soon who have more experience with what you are dealing with in the USA. No-one will mind you venting here - we understand.
Kia Kaha! (Be Strong)
All the best to you and your husband.
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
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Woobie
CH.com Alumnus
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I luv you guys!!!!!!!!
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Re: New here, how do you all do it?
« Reply #2 on: Mar 17th, 2004, 2:48am » |
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Hi Renny3
Ditto what Firebrix said.......
I'm no good with words... but Just wanted to say WELCOME...
dont forget to ask the neuro about some Oxygen....
stick around - you'll like it here!
tina
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t_h_b
New Board Hall of Famer
primary chronic since 1999
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Re: New here, how do you all do it?
« Reply #3 on: Mar 17th, 2004, 6:21am » |
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There's nothing I would add to that really good advice above except to specifically recommend that he talks to his MD about trying melatonin to control his CH. He could start with 0.5mg regular release for a couple of days and then increase it by 0.5 or 1 mg util it either helps or he hits 12 mg and it doesn't do anything.
Your husband is lucky to have your support. It's good for you to recognize that it also affects you and that you need support as well.
You might get him to come here for support and information. Having someone help with the research when first diagnosed would be very helpful.
This is a good place to vent because everyone understands without any explanation.
Welcome aboard.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Jackie
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Go For It!!!
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Re: New here, how do you all do it?
« Reply #4 on: Mar 17th, 2004, 9:10am » |
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Hi renny3,
Welcome to the site. I'm always saddened to read a post from a new supporter/sufferer.
You have received some good advice. Knowledge is power when fighting this battle so study everything you can. Going to the doctor well armed is always a good plan.
Yes, it is so hard to watch your loved one suffer. The helpless feeling is overwhelming. Be as stong as you can. He'll need your strength.
There is help.....please don't despair and keep us posted. We'll help you the very best we can.
Hugs,
Jacks 
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renny3
New Board Newbie
I love YaBB 1G - SP1!
Posts: 11
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Re: New here, how do you all do it?
« Reply #5 on: Mar 17th, 2004, 9:23am » |
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Thanks for all the encouragement. I guess I needed to have a pity party for myself last night. One good thing regarding this is I'm used to playing the advocate. My 4yr old son has a life threatening allergy to peanuts. Dealing with that in school and with friends and family has been trying at times. Everything I feed him is a life and death decision. I'm also in the medical field and that makes it little easier dealing with dr's and insurance companies. The info here is great. I gotta a referral for a neuro off of OUCH and am going to make an appt for my husband while he's out of town. My husband is going to his regular dr. Monday , I told him don't leave there without a script for Imitrex inj and O2.
I would also like him to have a MRI just to make sure there's no underlying cause of these. I will be strong for my husband as I am for my son. I believe knowledge is power and support is crucial to overcome any crap that life throws your way. Prayer can go a long way also. Thanks again for the info and support. I'll keep you all up to date and hopefully won't have another pity party for awhile!
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miapet
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what doesn't kill me makes me stronger
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Re: New here, how do you all do it?
« Reply #6 on: Mar 19th, 2004, 10:21pm » |
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Hi renny . . . I can't add much . . .you've heard from some of the best (thanks everyone, for all the support you have shown us) . . .I will really encourage the oxygen . . .it has been a life-saver for my hubby (chronic) . . .I would also encourage you to read read read and read some more . . .the more informed you are, the better you can a: deal with all of this, and b: advocate . . .
anyway, enough said.
This site has helped us so much!
*positive energy and light*
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Clusterbusters Rock
www.clusterbusters.com
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