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        Supporter's Corner >> Supporter's Corner >> Fearful
        
(Message started by: tracyboo on Oct 3^rd, 2006, 9:41pm)

Title: Fearful
Post by tracyboo on Oct 3^rd, 2006, 9:41pm

Hi guys. Well, we just spent another wonderful, funfilled evening fighting a 2 hour, kip 10 beast. Things have been so bad, Keith (my hubby) has spent the last two days home from work. Today was better than yesterday. He was actually able to make it all day without any excedrin. Which is huge (usually, will eat about 10 in 8 hours). However, the beast reared his ugly head about 7pm. He has been able to do the red-bull today with sucess but not tonite.

We are currently trying the Kudzu (up to 12 per day)and have recently ordered RC seeds and other stuff. It can't come soon enough.

As I know other sufferers and supporters can relate to me which is why I'm venting here. I know there is not much we can do for them but it sure is painful to watch and listen to. Part of why I feel bad is, sometimes, while he is going thru this I keep hoping he'll just be quiet because he's making me crazy. I know this is a TERRIBLE thought and I feel so bad for thinking it but I can't help it. He likes for me to sit with him and part of me wishes he wouldn't. Please don't get the wrong impression of me for saying this. I truly love him and feel for him and wish there was more I could do.

The fearful part comes in here. He keeps saying that he can't do this anymore. Yesterday, he didn't go to work and at the end of my work day I tried to call him. He didn't answer the phone. All I could think about was getting home and finding the worst.

I guess I'm just venting. This is the only place I could think to do it. Any advice is welcome and again, I'm not a bad person. I knew all about this beast before we fell in love and I wouldn't trade him for the world.

Thanks for listening!
Tracy

Title: Re: Fearful
Post by jon019 on Oct 3^rd, 2006, 9:57pm

Hi Tracy,

You are doing great. Some folks want no one around during a hit (like me), some need the comfort of someone near, even if they can't do anything. You will always have an ear (actually MANY) here. Vent away.

Oh, and BTW, try to convince him to get rid of the excedrin. It doesn't work and that many will tear up his stomach (migraine commercials be damned). CH is different. You can read all about it right here.

Hang in there, we care.

Jon

Title: Re: Fearful
Post by tracyboo on Oct 3^rd, 2006, 10:07pm

Thanks for the kind words. Believe me, I would do anything for him. Actually, tonite, I feel like I took the headache from him...lol...my head is splitting. But whatever the case, I'm happy he is sleeping, finally.

He did very well for about 8-9 months without excedrin. Like I said, he's been a trooper and sucked down the red-bulls. Can you drink too many? My guess is, that if one doesn't work, another won't either.

Like I said, I would never ever tell him to be quiet or anything like that. I just sit with him in the dark, where he wants me, then come out here and cry my eyes out. I keep promising him it will be better soon. I just hope I am right... ;)

Title: Re: Fearful
Post by Linda_Howell on Oct 3^rd, 2006, 11:07pm

He can have up to about 4 per day of the Red Bull, but I would be worried about his liver with those excedrin if I were you. Excedrin doesn't do squat for CH, so why take them?
Give him ice packs and strong coffee.

Title: Re: Fearful
Post by tracyboo on Oct 3^rd, 2006, 11:09pm

Uh-oh..only 4 red-bull huh...have to tell him that. the excedrin has caffeine in it so we thought that would help too. in moderation of course. ice doesn't help, will have to try coffee. thanks again!

Title: Re: Fearful
Post by nani on Oct 4^th, 2006, 12:13am

Big hugs to ya, Tracy....
[smiley=hug.gif]
...and thanks. :-*

Title: Re: Fearful
Post by Margi on Oct 4^th, 2006, 10:13am

Aw, Tracy - I've been where you are. SO many times. Big hugs. :(

Last cycle, Mike and I went camping one particular weekend. He'd been in cycle about 6 months by then and we were going a little stir crazy in the city. Thought the fresh mountain air might do him some good.

We didn't have any of the little E size oxygen tanks and he had had a pretty good week so we thought we'd be safe with JUST the Imitrex. We didn't feel like lugging the big 4 foot tank with us. Boy, was that a bad idea. He had 10 attacks in 24 hours - it was grim. After a completely sleepless night, we decided we needed to get him back home to his oxygen. He was SO frustrated that cluster was ruining yet another weekend. I packed up the motorhome while he took the truck down to load the boat.

Well, he took too long. I can't see the boat launch from the campsite so, of course, I imagined the worst. He too had issued that same statement "I can't do this anymore" earlier that morning. I started walking down to the dock, SURE I was going to see an empty truck and trailer there and the boat gone out to the middle of the lake for "one last trip". I was terrified.

Once I crested the hill, I saw the truck. He was patientiely waiting in line to retrieve the boat, he was fine - there was just a lot of people waiting to get their boats. I just turned around and walked back to the motorhome to continue packing up. I never told him - it would only increase his guilt about worrying me. You know.....even though we've got 20 years of this under our belts, it sure doesn't get any easier. That suicide worry is always there.

ANYWAY...is your hubby not using oxygen? If not, why not? I agree - get him off the excedrin if you can. And I disagree with you - DO talk to him about trying to stay calm during an attack. Not for you - for HIM. If he's losing his cool he really is making things worse for himself. It's taken Mike a long time to learn how to do this but it's been huge in our cluster survival. If Mike lets his fear/anger take over, his blood pressure escalates which, in turn, makes the pain go up higher and the attacks last longer. He's taught himself to sit still, breathe in the oxygen and stay as calm as he can. Sure, there are times when he can't do it, but it really has helped him. He also uses an ice pack on the back of his neck at onset - that helps him stay calm too, actually.

I'm glad to hear your hubby isn't on any other meds - that will mean the seeds will work better. But you still can try the non-prescription things to help him get to the day he can dose. Dramamine or Benadryl before bed to help him get through the night. Ice water at onset (helps to chill the trigeminal nerve), ice packs or frozen peas, neck massage if he will let you do it, Mike's even found abortive properties the odd time by eating a hot pepper at onset -it's the capasaicin (sp) that aborts I believe.

I'm always here if you need to talk off the board, Tracy. Like I said, I've walked in your shoes.

Hang in there, darlin - have faith that the light at the end of the tunnel doesn't necessarily have to be a train, ok? We're in this together.

hugs,
Margi

Title: Re: Fearful
Post by Margi on Oct 4^th, 2006, 3:37pm

one more thing, Tracy - and this is a tough assignment, I know.

Please try to make some time for yourself, ok? Even if it is just (here I go again) a quiet bubble bath while he's sleeping, with the bathroom door locked, some candles lit and pure solitude - allow yourself to recenter.

I know from personal experience that we supporters bury our stress and that takes its toll on us after awhile. Go for a workout, a walk, shopping, ANYTHING different from your normal routine. Give yourself an hour off and don't let yourself worry about him for the one hour.

And don't you dare feel guilty for your feelings ok? You're not telling us anything we haven't all felt at one point or another. This is hard work, Tracy - probably the hardest we'll ever do. No one blames you for being honest about your feelings and we all admire your honesty.

Just wanted to add that if you don't make this time for yourself, you'll crater. And you'll be no good to Keith if you crash and burn, ok? He needs you strong and the only way to find renewed strength is to allow yourself some time off. I know it's devastating and scary to leave him when he's in high cycle like this - that's how I discovered the amazing healing power of the bubble bath. ;)

So that's your homework for tonight, ok? I'll expect a full report in the morning! Got it? :)

Title: Re: Fearful
Post by maffumatt on Oct 4^th, 2006, 6:06pm

Listen to Margi, she is a wise, wise woman.
Matt

Title: Re: Fearful
Post by E-Double on Oct 4^th, 2006, 7:53pm

on 10/04/06 at 18:06:19, maffumatt wrote:

Listen to Margi, she is a wise, wise woman.
Matt

Yuppers!!!

Make time 4 you :-*

Title: Re: Fearful
Post by Margi on Oct 5^th, 2006, 10:18am

How was last night for you two, Tracy? Thinking about you...

Title: Re: Fearful
Post by BonnieW on Oct 5^th, 2006, 3:31pm

Great advise Margi - you should write a book - truly!
Hang in there Tracy - I can truly emphasize with you.

Title: Re: Fearful
Post by tracyboo on Oct 5^th, 2006, 9:32pm

Hi all! So sorry it's taken so long to respond. Besides working fulltime, I also go to school at nites and online.

Anyway, things have been better. During the day, he seems to do fine with the red-bull. Last night he had a bad one. Lasted about an hour. But, he did ok. The seeds came today so we are excited to try those. His last dose of Kudzu was this afternoon so he'll have been off of that for a little over 24 hours. Not ideal I know but it should be ok right?

As far as my "homework" assignment, well, I think instead of taking a bath, I watch my favorite shows...(LOST). I did that last night then lose myself in my homework.

I also wanted to thank all of you for your wonderful advice. You guys are the best group of people I have never met...lol...I'm already trying to talk him into going to next years conference. I think it would be great fun to meet you all. I also know that part of the key to our sucess is getting him to come on here. I think if you could read some stuff, for example, what Margi wrote to me above, that would help him. I think it'd help for him to really understand that he's not alone. Well, I'm working on it. ;)

So, that's about all I have. I mentioned that the seeds came.Well, the silly man of mine was so proud because he was able to soak them before he felt the need to take them. I asked him what he used to crush them. He looked blindly at me. All I can say is thank god one of us is doing the research...lmao...

Thanks again everyone for all the kind words, hugs and wonderful advice.

Oh, one more thing. What about using caffeine pills? Like No-doz???

Ok, now that's all...luv and hugs to you all!!! [smiley=winkkiss.gif]

Title: Re: Fearful
Post by Margi on Oct 6^th, 2006, 10:21am

Good to hear, Tracy - I've been worrying about you. Let us now how it goes with the seeds.

As to the No-Doz... I've honestly never heard of trying those. Be careful though - from our experience, caffeine only works to a point and, too much of it can have a trigger effect. I think you should get him doing ice water instead. It really can help.

Keep us posted!!

Margi

Title: Re: Fearful
Post by tracyboo on Oct 6^th, 2006, 8:36pm

Ok here goes. He just took his first dose of the seeds. [smiley=thumb.gif] We'll keep our fingers crossed and see how it goes...

Luv ya all!

Tracy