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Topic: I know it is coming! (Read 346 times) |
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KL
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My husband cycles usually starts around or before Father' Day. (we were in the er last fathers day). I know it is coming and I know he thinks about it. How do you stop the worrying. You lead a "normal" life and all of a sudden you go back to "hell". He will call from work and he will say "My neck is sore or My head is bothering me." All I can say is "You think it's related." We try not to talk about the "beast" because I think we think he will hear his name and come home.  Any way, just wondering how all my supporter friends deal with this pressure. Thanks for listening.
Keri ;D
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Becca
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Re: I know it is coming!
« Reply #1 on: Mar 30th, 2002, 5:19am » |
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Hi KL - I can relate! Its scary. We are also in that "prodromal" period, waiting for the other shoe to drop, so to speak. It's a difficult time - knowing his hell is just around the corner, but not knowing exactly when, or how bad it might get, etc.
My husband is Bill, another 6' 2" big guy who also suffers from sleep apnea and CH. We will be celebrating our 30th anniversary next year, and he has had CH most of that time, although it was only diagnosed as such in 1991 or so. He's been having neck pain and sudden quick jabs of pain on the left side of his face and head for several weeks now.
I have to remind him to use the oxygen every so often. That has been helpful. His doctor will not prescribe home oxygen for him, so we bought a used oxygen concentrator. Another CH board writer told us it wont deliver the volume and rate of oxygen that might be required to abort an attack, but so far it has at least been useful for relief of these aura symptoms and the anxiety they also bring. It's good to feel as if something is under your control! I think that's key - a strategy I see that many of the strong people on this board seem to have hit upon, control what you can, get help and information from every available source, share wisdom and encouragement, roll with the punches when they come, and never give up!
Another thing we are doing in preparation for the attacks is something others have done - getting information on CH and possible treatments together in a packet for his doctor, and considering looking up a headache specialist for him. There is a form that you can ask a doctor to fill out out-lineing the treatment plan for the CH patient in the ER, if a trip there becomes necessary. We are going to see about getting one of those made up and signed by Bill's doctor, too.
Best wishes to you - Becca & Bill
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NotH20
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Re: I know it is coming!
« Reply #2 on: Mar 30th, 2002, 2:49pm » |
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Keri, I am a sufferer of over 20 years and I wanted to respond to your post from a different angle - from my personal opinion and maybe this can help you and your family too. Another thing, other than waiting for the other shoe to drop, that causes a great deal of stress for me is the potential of running out of meds. Since the insurance companies have such a strict policy on what THEY consider us clusterheads to have as a relief is no where near what we actually need  - the chance of us running out of meds is always right around the corner. In preparation I've learned the hard way not to run out of any meds that have a restriction on refills (Imitrex injections, DHE injections, Imitrex pills, Zomig, Maxalt). If he has been on any of these abortives, you may want to call his doc and get some scripts for these so that he can have some meds on hand.
I think it's normal for the beast to be in the back of everyone's mind - I mean he is ugly, nasty, hateful, time-stealing, painful, hurtful (do I need to go on?) But don't allow it to win and run your lives. Live life to it's fullest when there isn't a cycle going on and pull from those memories when the cycle is active. Take pictures that can sometimes be used as focal points - the focal point of the end.
Just a few suggestions that may be helpful - I wish you, your husband and your family much luck w/ this coming cycle. Know that we are all with you both.
NotH20
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