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Topic: From an Anonymous Sufferer (Read 7732 times) |
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seasonalboomer
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Re: From an Anonymous Sufferer
« Reply #25 on: Jul 10th, 2007, 4:15pm » |
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Sometimes a tight supporter is more uncomfortable than using no supporter at all.............. 
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sldrswyfe
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Re: From an Anonymous Sufferer
« Reply #26 on: Jul 12th, 2007, 12:44pm » |
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exactly sb
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Kenny
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Re: From an Anonymous Sufferer
« Reply #27 on: Aug 28th, 2007, 11:53am » |
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My husband has been suffering from CH for 5 years. It took 2 Neurologists and 2 Family Physicians to try and diagnose it, but none of them could see past "Migrains" Because of this website, I diagnosed his problem and immediately started reading as much as possible on the subject. I printed out the materials and took them to our family physician. We are getting help for him (no cures-but Imitrex shots work while they last) but have been frustrated by my inability to help him when he goes through a bad cluster. Sometimes I have to go for a walk just to keep from crying in front of him! Your suggestions are welcome here. 
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Mosaicwench
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Re: From an Anonymous Sufferer
« Reply #28 on: Aug 29th, 2007, 2:33pm » |
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on Aug 28th, 2007, 11:53am, Kenny wrote:| My husband has been suffering from CH for 5 years. It took 2 Neurologists and 2 Family Physicians to try and diagnose it, but none of them could see past "Migrains" Because of this website, I diagnosed his problem and immediately started reading as much as possible on the subject. I printed out the materials and took them to our family physician. We are getting help for him (no cures-but Imitrex shots work while they last) but have been frustrated by my inability to help him when he goes through a bad cluster. Sometimes I have to go for a walk just to keep from crying in front of him! Your suggestions are welcome here. |
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Welcome Kenny!
I know all about going for walks or sitting on the porch crying when my dear is in cycle. It's what we do.
As you know from reading here there is no cure. But there is treatment and remission and help-aplenty. I would encourage him to come here and read and digest and learn all he can. Knowledge is power and can help during the darkest cycles.
My largest frustration, like yours, is not being able to help. My clusterhead wants to be left alone and that's what I do. It goes against everything in my nature to walk away from this beast but if that's what my dear wants, then that's what I'll do . . . thus the walks and the porch  .
I would also encourage you to have a frank discussion about his needs during an attack. He may not want you near but "near-by." Or he may like a massage or hot coffee or whatever. Find out what he wants from you and how best to facilitate it - even if it means he wants you to take a walk. At least you KNOW and can respond to this creepy beast who interrupts our lives.
Keep reading and don't be afraid to ask questions. Someone here will always be by shortly to help.
Welcome to the family.
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The difficulties of life are intended to make us better, not bitter. ~Author Unknown
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frozzy
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Re: From an Anonymous Sufferer
« Reply #29 on: Oct 22nd, 2007, 3:34pm » |
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I have just signed on so I can post in the boards. My husband has had CH for about 10 years. Diagnosed 6 years ago. He is in a cluster right now, for about 4 weeks. We have 2-4 weeks left of this life-sucking episode. He just went back to the doc today, usual stuff is not working this time. Looking into getting O2. I hope it works. My problem is to try to get hubby to not think its his fault when we can't go and do things. He keeps apologizing, I keep telling him its okay, its not your fault. I can see him ageing before my eyes, each episode (2x year) takes its toll. I'm starting to cry as I type this, I'm at work and can't get him out of my head. I know I have to be the strong one, and keep reminding him that it will be over in a few weeks, and to hang in there. I feel guilty when I get a good nights sleep, so helpless that there is nothing I can do but be there when he wants me. Thanks for letting me unload, none of my friends or family realize the depth of the pain he endures and how soul-sucking it is. I get regular migraines, so have an inkling but I know its only a glimmer into his world.
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Annette
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Re: From an Anonymous Sufferer
« Reply #30 on: Oct 22nd, 2007, 5:54pm » |
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on Oct 22nd, 2007, 3:34pm, frozzy wrote:| ..... Thanks for letting me unload, none of my friends or family realize the depth of the pain he endures and how soul-sucking it is. |
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Hello Frozzy
I am sorry to hear that your husband is in cycle again and the usual meds are not working and that its getting you down.
I understand perfectly how you feel with what you typed up there because I felt exactly the same thing. My husband has CH and his last cycle was more than 8 months long. Many times I thought I couldnt take it anymore, but then somehow I carried on. CHers get pain in their heads, we get pain in our hearts. Both hurt like hell !
Ask him to join the Board and talk to others here, it will help him tremendously. Organise oxygen as quickly as possible. Go for the high flow rate, most starting at 12-15 L/min but some go as high as 25L/min. Apart from it working very well for most in aborting a hit, it also helps cool the face and head and has a calming effect.
Other things help too such as an energy drink slammed down quickly at first sign of a hit, ice cold wet towels applied to the neck and face or for some scalding hot shower can help too.
You can encourage him to drink as much water as possible during the cycle and at the start of the hit. Melatonin at night often helps warding off the night hits. Make sure he eats well, sleeps as much as he can, keeps fit and does suitable exercise. Encourage him to try relaxation techniques, keep the mind clear, focus on the now and here instead of fretting about the next hit.
Apart from meds that his doctor can prescribe, there are a lot of things that you and him can try and do to help make life just that much more bearable. Every little thing helps.
By the way, I am concerned that he has had CH for 10 years and the doctor doesnt know to prescribe him oxygen as yet. Maybe he/she is not that familiar with CH treatment. If the hits are bad, is he on a prednisone taper? What meds has he tried ?
Keep yourself busy, keep doing the things you normally enjoy. Treat the hits as they come with whatever you have, oxygen, meds, ice, energy drink, strong coffee ...etc. Once they are gone concentrate back on life as normal as possible. You will see that 2-4 weeks will just fly past. Dont keep counting how much further he has got to go with this cycle, keep counting instead each day how many hugs and kisses and cuddles you have given him . They are what that count ! 
For yourself make sure you spend time on your own doing the things you like, get yourself some nice chocolate and some fresh flowers. Go for a walk and enjoy the scenery. Take deep breath and sing whenever you can.
If you feel like crying, my shoulder is always here and ready for you, just drop me an email or a PM
Take care, God bless and painfree wishes to you both.
HUGS
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Paula
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Re: From an Anonymous Sufferer
« Reply #31 on: Oct 23rd, 2007, 9:37pm » |
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It is amazing how great a childs soul is. I had nobody about 20 years ago, had a small 1 bedroom apt, my son sleep with me, he was about 2 or 3. He would be so quite, I would put milk in a glass for him in the fridge and he would get his own cereal in the morning, watch TV, or play. I even had a time at McDonalds in the parking lot were I had a dance with the devil in the back of an old dodge dart. I tried so hard to keep as much of it from him as I could but kids just know sometimes what is going on. He would tell me that he would buy me a new car and new house and nice furniture and lots of food. It was his way of saying it was OK and he loved me no matter how or where we lived. He is 21 and a very caring man. Women love him. He is very very understanding. But I haven't got my car or house yet! I am going to have to remind him of that. LOL Anyway, children have beautiful souls.
I have a great supporter now, and all the supporters here. Who could ask for anything more.
Love you all Paula
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Love, Paula
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RabidClock
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Re: From an Anonymous Sufferer
« Reply #32 on: Mar 12th, 2008, 7:46pm » |
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I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing.
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Jackie
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Re: From an Anonymous Sufferer
« Reply #33 on: Mar 12th, 2008, 8:10pm » |
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on Mar 12th, 2008, 7:46pm, RabidClock wrote:| I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing. |
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That says it all and tell me you are a fine supporter.
Big Hugs,
Jackie
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Angie
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Re: From an Anonymous Sufferer
« Reply #34 on: Mar 12th, 2008, 10:17pm » |
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on Mar 12th, 2008, 7:46pm, RabidClock wrote:| I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing. |
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You are so right, welcome, we will be with you every step of the way.
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