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Title: new member..wife of a suffer Post by IpityU on Mar 12th, 2006, 12:02am Hello All I am sogratefulfor this site. what a wonderful source of info. My husband is currently suffering what dr "thinks" may be CH. I have read alot of the stuff on this site and am certain it is what he is suffering. Oh how I feel for you all as a helpless on looker!! Jim has started this episode for the first time in his 48 yrs of life about 3-4 weeks ago. Was hesitantly given narcotics and even ehile doubling up on them..no relief. Now after reading I see this is not a source of pain treatment for CH. And I underatand why possibly his dr, hesitated giving them to him in the forst place. last week he had an MRI and MRA both "normal". Think he is kinda disappointed as this new thing for him called CH is not a quick fix as I am sure you all wish it were. Listen, I need your help. He goes to the dr. again on friday. I am going this time too. What do we tell the guy?? What do we not want to hear from him as far as a possible common misguided resolution to CH. My poor honey I can not stand to seethis going on day after day. We have 10 young children all living at home and it is taking a toll on them as well. I think his dr. will listen and truly will want to help Jim(O2 was briefly discussed at his initial visit)... but any time saver facts from you all would be appreciated. Jim is starting to become depressed. He can not understand why all of a sudden this is happening. Also when "shadowing" is talked about, would this be the Jim describes as "a constant feeling on the left side of his face and around the eye that something is not right and is about to happen or could happen"???? Family members are saying sinus troubles run in the family and this is what it must be. Should we ask for a Scan of the sinus?? Jim has not really ever had sinus problems. He does have impacted ear wax build up that dr. plans to remove on friday...i find this hard to believe it would cause the "clockwork" headaches though! Any suggestions for the dr. visit would be greatly appreciated! regards and my sympathy to all you who suffer so! Lizah |
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Title: Re: new member..wife of a suffer Post by MJ on Mar 12th, 2006, 2:04am Hi Lizah Dont pity us none here seek pity just knowledge and understanding. Knowledge of CH is the key to dealing with it. When your husband mentions the feeling around the side of face/eye, its a feeling many of us experience. Not necessarily shadows but more of an unexplainable bruised feeling and knowing whats to come. Virtually impossible to describe if one has not felt this before. Shadows are different for many but generally are a lingering low level cluster headache that can last sometimes for days on end or just a few minutes. Please continue reading here and someone will be along with a bunch of informational links, possible treatments etc.. Glad to see you here. How often does he get headaches and how long. |
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Title: Re: new member..wife of a suffer Post by E-Double on Mar 12th, 2006, 7:27am No pity Please ;) This is a great resource to know like the back of your hand...print it out and give it to the doc http://www.brightok.net/~mnjday/chtherapy.pdf It will present the appropriate treatments that you should seek for hum and your doctor should know!!! If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!! http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover" http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753 If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep. With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time. Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not... The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern. I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!) It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... Like I said we are all different. Best wishes, good luck & stay as positive as you can!!!! Eric |
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Title: Re: new member..wife of a suffer Post by Bob_Johnson on Mar 12th, 2006, 8:52am In the absence of any clear clinical signs I'd not pursue the sinus route: seldom worth the effort/$. He can routinely clear his ears by letting the shower play into the ear. The pressure won't do damage and warm water is effective to remove wax. You don't say anything about the doc. Does he have experience with headache? If not, I'd try to find one with experience/skill. Cluster is too complex a disorder to handle by a general doc. I hope you have some options available to you. |
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Title: Re: new member..wife of a suffer Post by Guiseppi on Mar 12th, 2006, 9:41am Bless you first off for being a supporter, when I get in really bad shape with mine, my wife keeps my head up! Oxygen should be one of his first lines of defense. Read the link on how to use oxygen as used incorrectly it can be worthless, used correctly it can stop the beast in its tracks. I use lithium as a preventative when I'm on cycle. I'm a 46 year old male and I weigh about 190 pounds. I use 1200 mg of lithium daily. It's been my primary preventative for years and blocks about 85% of them, I use my oxygen to block the others. The biggest problem you face is that by spending an hour on this site, you will know more then the majority of the doctors about cluster headaches. Read the links you've been provided and get ready to take charge of your husbands treatment. Welcome to our family, we know you hurt too. Guiseppi |
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Title: Re: new member..wife of a suffer Post by thebbz on Mar 12th, 2006, 1:29pm You and your husband are just getting started. Read the information on the left. Get him on here and have him take the cluster quiz also on the left. Read the links Eric provided. All the info above is good stuff. By doctor I hope you mean neurologist. If not insist on a referral to one. I would think the MRI would have found sinus problems..but I'm no doc. Check the O2 information on the left. Print some of this information you find relevant and take to the doctor with you. Hope for the best ....and CH will not kill you so try to relax. jb |
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Title: Re: new member..wife of a suffer Post by IpityU on Mar 12th, 2006, 5:49pm Oh My!! I am a bit overwhelmed by the support here....thanks guys or all the great recommendations. Jim's dr is not a nuero.but what does it matter if they are not privy to CH??? Or are most nuero's informed? How could I ask for a referral..meaning on what grounds? simply headaches that do not go away and MRI/MRA say things are normal? Do dr's generally comply or do I have to get nasty?? Jim has taken the survey..definately a candidate for CH! Doea any one find going out on a crisp cool day or evening and just breathing fresh air a comfort or short term relieve. Jim seems to think his day outside yeaterday was great for him and feels "real good" today. Or could this be a short cluster cycle of 4 weeks? Funny, he is walking around today feeling great and I am scared to death for 9:00pm to come because you knowwhat always arrives then! I hate watching, I am such a whimp and to think giving birth to 10 children naturally is nothing compared to a CH! Lizzah |
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Title: Re: new member..wife of a suffer Post by thebbz on Mar 12th, 2006, 6:36pm Lizah, :)Or are most nuero's informed? the jury is still out on this one.. [smiley=laugh.gif] Most are. How could I ask for a referral..meaning on what grounds? Hello again, Your GP is exactly that a general practioner. Your husband by your description is showing signs of a classic and acutly painful neurological disorder. Dont ask, demand a referral to a neurologist they are the only ones who can make a diagnosis for CH. A neurologist specializes in headaches. |
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Title: Re: new member..wife of a suffer Post by IpityU on Mar 12th, 2006, 6:58pm Thanks! I think with all this great advise..I am informed and ready to do battle! Lizah |
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Title: Re: new member..wife of a suffer Post by thebbz on Mar 12th, 2006, 7:16pm ;;D You sound like your off and please let us know whats the poop ;) Good luck jb |
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