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Topic: Hello from hell (Read 420 times) |
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Emily87
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Hello from hell
« on: Sep 22nd, 2005, 8:21pm » |
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I've been married to the most wonderful man I've ever known for the past 14 years. He has been a CH sufferer for all of them. This last cycle has lasted since may. I don't know how much longer he can last, or I can either. I love him and I am so afraid this will kill him. Or God forbid he kills himself. I know he's thought of it in the past, but only when actually in a headache. We have a neurologist who is supposed to be the best in the area, but all she does is throw one medication after the other at him. He decided to stop all but 2 because he feels like hell all the time and can't take it any more. Her latest prescription in Depacote, and he's continuing this as well as the imitrix injections - which always work, unless he has more than 2 CH per day, which has happened daily for the last 3 weeks. I just need to vent and I am so grateful to read your postings and know that even though our house is dark, and stupid people say "Oh I understand, I get the worst migraines", it is really nice to know that you all are here. I've felt very alone in this, I can't explain it to anyone and anytime I complain, even just in my head, I feel like I'm being cruel because it's obvious he is truly suffering and if he could stop it he would. Please don't misunderstand me, I love him so dearly and would never leave him or allow him to suffer alone - but God I miss the sunshine and the way our life is when he's out of a cycle.
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maffumatt
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you husband is a lucky man, let me say thankyou from all us sufferers. Without our supporters it would be just that much harder to cope. You found a home here, drag your husband to this site, pull up a chair and make yourselves at home.
Matt
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Major
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I love YaBB 1G - SP1!
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Posts: 22
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Re: Hello from hell
« Reply #2 on: Sep 22nd, 2005, 9:05pm » |
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Hi Emily,
Welcome aboard - I'm a supporter too. Although you may feel alone amongst your family/friends, you've found a great place to be... there are lots of people here that are in the same boat. Vent away - that's what we're all here for.
There is alot of really good information on the site - read everything you can as there are many treatment options that you guys might not have tried yet. You mentioned that he's tried a bunch of different drugs - has the Dr prescribed 02 yet? My husband had such great success with 02 that he only used trex if he was away from his tank. The 02 took care of the ha's without the after effects (or cost) of trex. Our Dr probably would have never have prescribed it had we not asked... and we only asked because of what we read here - information is a great weapon against this.
Good luck to you both - may sunshine come your way soon.
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Baked
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I love YaBB 1G - SP1!
Posts: 4
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Re: Hello from hell
« Reply #3 on: Sep 23rd, 2005, 5:20pm » |
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Thanks for the welcome, yep we got O2, lots and lots of O2. If we catch it fast and earlier in the cycle it helps, but there comes a time when it wont. sometimes I think we've tried everything! Believe it or not he never gets a headache when he's riding the motorcycle, I think its the forced injections of air! But when he stops there it comes. This thing really runs our lives. When out of a cycle he is the most active person I ever met and has about a thousand interests and projects and plans. When the cycle hits all of that stops, which leaves him so frustrated and angry that he's stuck. Add to that the fact that I love my time alone and puttering around, this evil crap shows up and he gets nervous about getting one and I all but trip over him daily. We are afraid for him to go more than 5 miles away alone, this just isn't us!!! I like our time together to be us, not the headache. We are both independent people who love to be around each other and also enjoy our time spent on our hobbies or with friends. Oh, and the food issue! He's pretty much a fussy eater to begin with, but once the cycle starts he can't eat BBQ, citrus, caffiene, spices, milk products, on and on and on. The other day he looked so forlorn as he looked at the pot of plain rice for dinner! Like a little boy who got told everyone else gets ice cream for dessert and he gets spinach! Thanks for listening, Emily (oh, and he was very excited to tell me about this website- i hated to burst his bubble and tell him that this is the one I told him about last night!)
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kayarr
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Re: Hello from hell
« Reply #4 on: Sep 26th, 2005, 3:49pm » |
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Hello Emily,
So sorry you two are going through all of this.
I understnd being tenative about going anywhere. We never leave home (unless we forget and have to go back...lol) without the oxygen. Just and e-tank and a hose. Crank it up and in 10-35 minutes the Beast backs off for a while.
I see you have him on Depokote. Has he tried Verapamil? My guy had no idea how much that helped until he had to stop because of his new heart medication. (specifically the beta blocker. The two don't play well together
Hopefully you both will be in remission and hopefully if not forever for a good long time.
Here's to being PF!!!!!!!
Kimberly
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Nothing is impossible! Just believe!!!!!
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Joni_D
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I love YaBB 1G - SP1!
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Re: Hello from hell
« Reply #5 on: Sep 27th, 2005, 7:28am » |
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Good morning to "hello from hell".
I have never posted to any message boards before in my life but I come to this message board daily as I too am a wife of a sufferer. On any normal day he is a wonderful man but when the headaches hit he is a totally different person. I feel I could have written your letter myself along with so many other supporter letters. I come to this website daily because I feel so much better knowing I'm not alone. Our friends and family don't understand even though they think they do.
My husband uses the injections along with an increased dose of Topomax. He has suffered at least once a year for the last five years. It hits either early fall or early spring. Our life is on hold as you say and I have many lonely hours as I'm afraid to leave the house when he is upstairs suffering. His headaches hit late afternoon into the early evening. He sleeps throught dinner some nights and never does eat. He swears I'm using onions in everything even though I'm not. His sense of taste and smell are so different right now!
Anyway, I needed to "vent" and I know all of you that read this will understand.
We are two weeks into the cycle and hopefully it will end soon as in the past they end around 3 - 4 weeks.
Thanks to all and have a great day!
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AussieBrian
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Got beer?
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Re: Hello from hell
« Reply #6 on: Sep 27th, 2005, 7:53am » |
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Joni, we understand.
Our hearts go out to you, we know what you're going through, we understand.
Welcome home.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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