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Topic: My husband gets CH (Read 484 times) |
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emeraldgirl56
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My husband gets CH
« on: Nov 10th, 2006, 7:26am » |
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Hello, all. I have been a lurker on your board every time my husband is in a cycle. I cannot image the pain suffers go through. I have never seen my husband in a full blown headache as he cannot stand anyone to be around, but I have certainly seen him afterwards, so I have some feel for their severity based on how he acts after. (please dont yell at me for saying that, I KNOW I have no idea about the pain, I am just saying I know how wiped out he is afterwards) And I am writing, because he truely does not have the patience to, and he is so wiped out does not have the inclination to either. It is a miracle he is able to function at work, he is in sales.
As a background, his CH started about 18 years ago. He is now 53 and a smoker. (He says that when the headache receeds, it helps the pain to smoke.) The first cycle, he got them all day long, not just at night. The cycle lasted from approx. November to March. After four years, we had to put our dog to sleep in December, and low and behold, the headaches stopped that very month! We were so sure the CH were triggered by a combination of dog hair and the season. He remained CF for FIVE years. Then we, were on vacation in CA in September, at Universal Studios, and I looked at him and knew he was in another cycle. This cycle lasted until approx March and he had that same scenario for the next two years, when they magically disappeared. In the fall of 2003, he began another cycle, which "only" lasted six weeks. He has been cluster free until five or six weeks ago.
As far as meds go, I cannot remember everything he has tried. For the last cycles he used Imetrix, and that really did seem to help, even though it was the tablet form and I know there are many on here for whom that does not work. The headaches were less severe, and he generaly had only one a night so it was managable.
This current cycle is a bear though. Last night, he had four! He got oxygen but does not have a mask, we didnt know to get that, so he is calling the doctor today. Even without the mask, he seems to feel it helps with the severity and duration. He is currently on Verapamil, but a steady dosage, we didnt know it should be ramped up, so again he is going to ask about that. He is also taking something else, I cannot ask, I think he is beginnig another CH, but I know that it is a steroid.
I told him yesterday about the water treatment, he is going to try that today.
He has not seen a neurologist, the last cycle, in 2003, he had a referral to one, but by the time he got in to see him, months later!!!, the cycle was over.
I don't really know what I am hoping to accomplish by writing this here, I guess I am just glad to know that he is not alone.
We are open to any suggestions you may have.
Wishing a PF day (night) for all.
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chopmyheadoff
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Its only a headache, deal with it - SMACK
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Re: My husband gets CH
« Reply #1 on: Nov 10th, 2006, 7:45am » |
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hi there, sorry your hubby is in pain.
imitrex tablets are next to useless for ch as they take so long to kick in.
he should be asking for the self injector kit, its just like an insulin "pen", you just put it against your leg and click the button.
this kills my headaches in about 1-2 minutes
also, what dose of verap is he on. im now on 480mg a day and am pretty much pain free .
read read read, there is a wealth of info on here.
any questions - just ask 
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Redd
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Re: My husband gets CH
« Reply #2 on: Nov 10th, 2006, 7:46am » |
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I'd assume the steriod is Prednisone(sp) which normally is started at 80 to 100 mg per day then slowly tapered down over 2-3 weeks while the verapamil is increased slowly over the same amount of time till reaching an effective dosage.
Here's the kicker...not all meds work for everyone, and what may have worked in the past may not work this time. But there are options.
http://www.brightok.net/~mnjday/chtherapy.pdf
This is the best document so far on CH related therapy.
Please keep us posted and do get a mask for the O2. Non-rebreather. Better yet a clustermasx. Someone will be around soon with a link for this.
Keep us posted on his progress. We aren't docs as you know from lurking but we are expert patients.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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emeraldgirl56
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Re: My husband gets CH
« Reply #3 on: Nov 10th, 2006, 8:02am » |
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Thank you both for your speedy reply! I am near tears knowing somebody did!
I had already printed off the document you mentioned for him to tell the doctor about when he calls today.
And you were right about the perdnisone, or however you spell it. He is able to talk again and that is what it is, but he is finished taking it. Should he ask for it again, and also ramp up the verapamil? I am asking if that works in combo, or since he has already taken the perdnisone, just ramp up the verapamil? Hope that makes sense... oh as far as his dosage... I think 80 or whatever the lowest dosage is... I know he needs to get that changed and is going to today when he calls.
Thanks again for your replys... feeling so much less alone!
Wishing all PF days and nights!
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| « Last Edit: Nov 10th, 2006, 8:11am by emeraldgirl56 » |
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Redd
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Re: My husband gets CH
« Reply #4 on: Nov 10th, 2006, 8:19am » |
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Prednisone is a transitional med, not something to be taken long term. That can have viscious side effects over time. If he's on only 80mg of verapamil a day, that is quite a low dosage. Many take 480mg per and higher to get effective relief, however, blood pressure needs to be monitered. Some people have no problem tollerating higher doses, where others (like myself) even 100mg/day was dropping my blood pressure too low.
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emeraldgirl56
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Re: My husband gets CH
« Reply #5 on: Nov 10th, 2006, 8:22am » |
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Geesh... I got the verapamil thing wrong... he just told me is is taking 3 80mg per day... so I guess that was perscribed correctly, except perhaps it needs to go higher, as it is not working... he started out with one and gradually increased it to that dosage.
And he does know that what worked before may not work this time... as you all know, that is the second most frustrating thing about these things! The first being that you have them at all, of course.
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BB
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Re: My husband gets CH
« Reply #6 on: Nov 10th, 2006, 8:51am » |
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Hello Emeraldgirl
Welcome to the Board and thank you so much for being such a good supporter for your husband !
My husband has CH and I am here for him as well so I totally understand how you feel.
You have already been given excellent advices so I wont add more for now. I just wish to thank you for posting, not many supporters post here in place of their CHers , so you have helped made me feel I am not alone ... Thank you 
I wish you and your husband all the best and I pray that he will enjoy painfree days and nights soon and that his cycle will become easy and short.
Take care,
Annette
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chopmyheadoff
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Re: My husband gets CH
« Reply #7 on: Nov 10th, 2006, 8:56am » |
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some people go up to 960mg ed on the verapamil.
it is important to have an ecg every time the dosage is increased to monitor heart activity though.
again, Imitrex INJECTIONS are what saved me.
But as stated above, the beast differs in all of us
chop
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emeraldgirl56
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Re: My husband gets CH
« Reply #8 on: Nov 10th, 2006, 9:23am » |
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Hi Annette!
I have been reading your posts with great interest over that last several days! I think you are awesome!
My husband is not into doing internet searches at all and I love it.. he calls me the queen on the internet!  And really, because of the lack of sleep issues and the headaches and his job, he truely does not have time to do it. He would never in a million years post on a message board... just not his thing. So if I can help, I certainly am going to try... I am just sorry it took me so long to come out of delurking mode!
He is calling his doctor today, armed with tons of information I have given him from here. I gave him the link to the brightok.net file too.. so his doctor can go there ... he is open to things like that.
Your husband sounds like he has more problems than does mine.. with the eyesite issues... that is just awful, I hope that gets better in time. It is bad enough dealing with the headaches without that too.
It is nice to be able to talk to people who undertand. Nobody we know has even heard of CHs. People always say, yeah, I get really bad headaches too... and you know that they have no idea what you are talking about. When you explain it to them, how severe they are and how they affect your life when he is in a cycle they are ohhhhhhh.... At least our boys are older now and quiet... When he first got the clusters they were 5 and eighteen months. You cannot imagine how hard that was keeping them quiet! Well, you probably can! Now they know what to do and how to behave when he is in a cycle, they are 22 and 18 now. One is away at college. (sorry I am rambling.. it is just such a relief to talk to someone who understands!)
Anyway, just wanted to thank you for your post... and tell you that I have been reading yours and found them very helpful and comforting!
Best of luck to your and your husband!
Diane
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| « Last Edit: Nov 10th, 2006, 10:10am by emeraldgirl56 » |
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BB
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Re: My husband gets CH
« Reply #9 on: Nov 10th, 2006, 1:42pm » |
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Yay ! I think I have found myself a sister 
Thanks for everything Diane
Annette
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Margi
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Re: My husband gets CH
« Reply #10 on: Nov 10th, 2006, 2:00pm » |
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Hi Diane, and welcome - glad you found this place. Not only is your hubby not alone anymore, neither are you. There are lots of us supporters here and quite a lot of knowledge to draw from.
I worry when I see that your hubby is on the verapamil and imitrex...although I totally understand why, don't get me wrong. Verapamil takes about 10 days to build up in his system before he sees any results and he should only step up the dose with doctor supervision. We were told three days per step up - in other words....he can't go from 240 to 720 in one day, ok? The next step up would be to 320mg and then he'd have to stay there for three days before going to 400mg to give his body time to adjust. It lowers blood pressure and can cause drastic drops (or spikes) when starting or stopping suddenly. Please know this about verapamil.
Has he tried an ice bag on the back of his neck at onset? That really helps my hubby. Also - oxygen is your best bet. My hubby originally just huffed it from the welding torch, no mask or regulator at that point. He found amazing results from it that way, too. But MUCH better with the non-rebreather mask though. Jonny, a resident angel here, built us a regulator for our welder's tank back then and we got a mask. We've since graduated to medicinal oxygen but still use Jonny's regulator. The high flow rate and the right mask will make a world of difference for your hubby. Don't forget to check out the new clustermasx at www.clustermasx.com, invented by a sufferer.
Please feel free to stop over to the supporters boards too, Diane - lots of us there who've walked in your shoes. Myself, I'm a 20 year supporter - I hear you on the keeping the kids quiet thing.
Hang in there, lady - you've found the right place to ease both your pain.
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| « Last Edit: Nov 10th, 2006, 2:05pm by Margi » |
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BarbaraD
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Re: My husband gets CH
« Reply #11 on: Nov 10th, 2006, 5:31pm » |
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Welcome Diane -- sorry you had to find us.
Has your hubby tried melatonin at night (6-12mg)? It takes a while to get in your system and go to work, but it helps get thru the night without getting hit. I swear by it.
Read Read READ..... there's years of advice here and what works and what didn't work.
Let us know how he does...
Hugs BD
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emeraldgirl56
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Re: My husband gets CH
« Reply #12 on: Nov 10th, 2006, 6:28pm » |
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Thanks to everyone who has responded! Tony and I are very appreciative!
Margi, sorry it was not clear, but he is not using imitrex any longer. It stopped being helpful some time ago.. like several cycles ago. The ony thing he is using now is verapamil. He is up to 320 mg a day but it is sure not helping. He even had one CH at work today, which usually does happen. Mostly he is a night time sufferer.
Our doctor was out of town today and I think throughout the weekend so have not heard anything about upping his dosage of verapamil.
At least it is the weekend so perhaps he can catch up on some sleep during the day, when he usually does not have the problem.
Best wishes to all.. and again thanks so much for your replies!
Diane
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mrs mac
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Re: My husband gets CH
« Reply #13 on: Nov 10th, 2006, 6:34pm » |
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hi there, i can't really add any more to what has already been said!
but just wanted to welcome you to .com, from another supporter, we need support to just as much as the sufferers do. We go through every attack with them, and we have to watch them and feel helpless
i just want you to know there are other supporters out there who are there for you as well as your hubby
take care
sandra xxxx
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emeraldgirl56
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Re: My husband gets CH
« Reply #14 on: Nov 11th, 2006, 1:41am » |
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We got the melatonin today, I hear snoring from the family room, hoping this is working!
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emeraldgirl56
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Re: My husband gets CH
« Reply #15 on: Nov 15th, 2006, 1:18pm » |
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Finally got the non rebreating mask this morning! Doctor has also ordered the dosage of verapamil up ...
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RichardN
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Re: My husband gets CH
« Reply #16 on: Nov 15th, 2006, 6:32pm » |
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Make sure your regulator goes to at least 15 lpm . . . all too frequently, the first regulator furnished (especially if from a doc who's not familiar with CH) is an 8 lpm regulator . . . not useless, but not near as effective as the higher flo reg.
Don't be surprised if he has some constipation as the Verapamil dosage goes up . . . .easily controlled by diet or stool softeners.
I am absolutely convinced the water therapy has helped me reduce the frequency/intensity of my attacks . . . it takes a LOT of water (You might want to check with the doc about excess water diminishing the effects of current meds . . . . don't think I've ever seen a thread on the subject)
Thanks for being a supporter . . . .my wife found this site for me . . . four and a half years ago . . . gave me my life back.
Be Safe. PFDANs
Richard
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Jobette
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Re: My husband gets CH
« Reply #17 on: Nov 15th, 2006, 6:58pm » |
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My heart goes out to all supporters . They are a rare group of people who often find themselves as helpless as the sufferers, because they have to watch their mates or children go through something and there is not a damn thing that they can do about it  . This is what we call through the good times and the bad!! Thanks, Jobette
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emeraldgirl56
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Re: My husband gets CH
« Reply #18 on: Nov 16th, 2006, 6:53am » |
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Thanks again for your help and comments. The non rebreathing mask seems to be helping a ton.. he says that kills the headache within five minutes. I have told him about the water treatment... he says he is doing it, but I still think he is not drinking enough... am going to print off the water therapy info again... still waiting for the verapamil to help... upped the dosage yesterday... the melatonin seems to be a god send.. he is sleeping between attacks at least.
Hoping for some relief soon.
PFDAN to all!
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kayarr
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Re: My husband gets CH
« Reply #19 on: Nov 16th, 2006, 7:31am » |
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Glad the O2 works. It is our weapon of choice. My husband also gets them and he is not on the site either.
We only do O2 as it seems to be better for him. Keep it with ya at all times and it mostly aborts the hits in from 5-15 minutes. Right now he gets hit on average three times during the day and three at night.
Keep up the good work.
Kimberly
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BB
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Re: My husband gets CH
« Reply #20 on: Nov 16th, 2006, 3:04pm » |
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Hello Dianne,
So glad to hear the oxygen is working for your husband and that he is getting some painfree time.
Wishing you both many more PFDAN.
Hugs
Annette
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seasonalboomer
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Re: My husband gets CH
« Reply #21 on: Nov 16th, 2006, 3:40pm » |
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another happy O2 customer!!! your husaband must be thrilled to have a weapon against the beast.
Scott
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emeraldgirl56
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Re: My husband gets CH
« Reply #22 on: Nov 18th, 2006, 6:04pm » |
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Last night was the first night since this cycle began the first week in October that Tony slept all night! WOO HOO
Hoping the verapamil has finally kicked in with the increased dosage! And even better today, he took a nap lying down in bed no less, and that didn't trigger a CH, which it usually would!
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