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Title: he's suffering Post by ponos52 on Sep 27th, 2003, 12:23am hi guys. my husband has been suffering from clusters 25 years. for 21 years he was misdiagnosed for having sinus problems.medication,cat-scans,doctors,specialists,nothing. noone ever mentioned cluster headaches. i stumbled upon some info on it reading some medical magazine 2 years ago and said "aha!!!" thats what it is. he was pain free for 4 years and now its back. but i'm confused about something. other years, he had the attacks strong from day one, each one lasting for an hour, and getting many in the 24 hr. period.this would last about 2 mos. this time, he had attacks now for 2 weeks, coming mostly at night, and lasting for minutes. yesterday, he had no attacks and slept pain free all night as well as today. we thought ,wow, its over. well tonite for two hours hes having the most painful attack and still hasnt seen relief. is this common? i mean for the attacks to go away for a day totally and then come back stronger? is this just the beginning? i'm afraid to think. this is my first time posting anything and i would appreciate any feedback.thanx, ria |
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Title: Re: he's suffering Post by Dave_Emond on Sep 27th, 2003, 1:10am Hi Ria, Sorry to hear this, our prayers are with you both. I don't see anything uncommon about the way this cycle appears to be hitting. Back when I was episodic, at the begining I could set my watch by attacks. Over the years though, the patterns changed somewhat like you describe. Although I'm chronic now, I can understand how horrible this must be for you now. Especially after escaping for so long. Don't let your husband lie flat on his back, that will only make the attacks last longer. Wish I'd learned that earlier. He's going to need your support, which obviously he has, since you're here. If it gets too bad tonight, you may want to consider going to an ER and getting him on Oxygen. We all know what you're both going through and it's so hard to sit here and think of things to say to try to ease things for you. Keep telling yourself and him that it will pass. It will. Please come back and tell us more about what is going on, what medications you have, or just to talk with us who understand. We will be here for you all the time. You are not alone. Hope this is just a quick cycle, and will end soon and never return. Our thoughts are with you, Dave |
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Title: Re: he's suffering Post by taraann on Sep 27th, 2003, 1:23am I am so sorry to hear about your husbands pain. I think what you are describing is normal. The begining of this cycle for me I could almost set my watch to when the CH was going to hit....but now it seems to hit whenever it wants....the only thing the same is that nights are the worst. You are a great wife for looking for some advice on your husbands pain. Stick around this is a great place for info and support and I'm sure you'll get some really great replies. |
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Title: Re: he's suffering Post by Prense on Sep 27th, 2003, 8:32am on 09/27/03 at 00:23:35, ponos52 wrote:
That is common as hell for me, but I am chronic. I have not had an attack that I did not abort last less than an hour though. Either way, get him to this site...have him read read read! Then get him to a doc as well as a neuro. Also, try to get a CAT scan and an MRI to rule out rare things that can cause clusterlike symptoms. Verapamil works for many here as a preventative... imitrex injections and O2 are great as abortives. When you get him here...that doesn't mean you get to leave! ;D Be certain to check out the supporters forum as well. Hang in there! Chris |
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Title: Re: he's suffering Post by Dave_Emond on Sep 27th, 2003, 12:17pm Hi Ria, Just hoping to hear back from you about how you and your husband are holding up. Hope all is well, please let us know how you're both doing and if there is anything of any manner we can do to help. God Bless, Dave |
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Title: Re: he's suffering Post by ponos52 on Sep 27th, 2003, 12:45pm hi dave. thank you sooooo much for taking the time to write to me. he's in pain alright. scared to think how long it will last. i hate to see him this way. the kids hate it too. it really is comforting to me(and to him ; i read him the posts since he has nowill left in him for anything) to know that there are other supporting sufferers out there. i pray to God for all of yous to always be pain free and for science and medicine to finally find a cure. hugs...ria |
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Title: Re: he's suffering Post by BarbaraD on Sep 27th, 2003, 1:24pm Ria, Get some black coffee down him when the HAs first start to hit. Sometimes that will lessen them (it does for me - sometimes) - the caffine. If you can get a scrip Try the O2 as an abortive. It works for a lot of us - sometimes. I keep saying -sometimes cause not much works all the time, but sometimes is better than never. Sorry to hear you're having such a ruff time. But we've all been there so we're here to help. Stay around and let us do what we can... Keep us informed and we'll offer what we can ... Hugs BD |
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Title: Re: he's suffering Post by Charlie on Sep 27th, 2003, 11:02pm Welcome and sadly, what you describe isn't that odd. Mine could sometimes behave irratically too. We all have had the night attacks. Bounce you right out of bed wishing you could kill something. I hope you stick around as you'll find some good ideas here. Here are two helpful links: The first is to a description of this disorder that does a wonderful job explaining to families, friends and employers what cluster headaches are and that they have little to do with what is thought of as a “headache.” The second is to a technique learned from a neurologist that works well for me and others. http://www.ouch-uk.org/ch/note_colleagues.cfm http://www.netsync.net/users/charlies/ Charlie |
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Title: Re: he's suffering Post by Carl_D on Sep 27th, 2003, 11:08pm Quote:
I can go for days without one then BAM! 5 in a day. No rhyme to the reason, can't figure out a set pattern. They are known as the alarm clock headache for waking people up at night, that is my worst time. Hope your hub finds some relief. Have him ask his doctor about Verapamil, o2 therapy and Imitrex. Peace, Carl D |
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Title: Re: he's suffering Post by Mark C on Sep 27th, 2003, 11:22pm Hi Ria, Welcome to the nuthouse. The only pattern seems to be no pattern. I have been lookin for something environmental for almost 30 years to gain some control over this crap...so far no luck. The triptan family of drugs is the first thing to ever give me some relief. There are many options for us so we do not have to suffer like we did just a few years ago. I will attach a few favorite links to help get yall started...good luck and I wish all the PF time you can find. Hang in there guys! Mark http://www.clusterheadaches.org/diagnose.htm http://www.clusterheadaches.org/library/general/index.htm http://www.clusterheadaches.org/medications.htm http://www.clusterheadaches.org/resources/non_script_treat.htm |
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Title: Re: he's suffering Post by nancyc on Sep 27th, 2003, 11:37pm Hi ria, so sorry your husband is suffering..i am chronic and never know when my chs are gonna hit...usually nitetime is the worst for me...but last year, i was getting hit alot in the day hours...the beast is definetly unpredictable...I, for one, cant live without my ice pack..i used to put it on my face, the affected side, when i went to bed at nite to try to keep the beast away..Hang around...lots of great support here..smiles,nancyc |
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