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Topic: Just new and desperate to help hubby (Read 253 times) |
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Cookie
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Just new and desperate to help hubby
« on: Aug 10th, 2006, 8:14pm » |
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Hi everyone
My name is Teresa and I'm not a CH sufferer but my poor hubby Dean sure is. We live in Gisborne, New Zealand with our 3 children. What an awesome site this is. I am so happy to have found it!
First up, neither Dean or I have ever used any computer chat rooms or whatever before so please forgive us if we do this wrong or this message ends up in some weird spot!
Dean is 45 and has been a having these attacks for at least 21 years. Got correctly diagnosed about 5 years ago and before that was treated for a lot of the things the other members have been. He started a new cycle 2 weeks ago after a 3 year break and this one just seems so nasty. He takes Imigran shots which work a treat but the things that have worked during other cycles to prevent an attack aren't working at all, mainly coffee and putting his head under a cold shower (its winter here in NZ at the moment so he probably hasn't been that enthusiatic about that one).
I'm off to the health shop today to pick up a few of the things I've read some of you trying. Can someone tell me what is Kudzu as I've never heard of it and is the caffeine in the Red Bull what seems to make it work?
It is just so horrible watching Dean go through this again! We will try anything to help. Do these things ever go away for good?
My sympathies are with all CH sufferers!
Cheers, Teresa
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thebbz
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Re: Just new and desperate to help hubby
« Reply #1 on: Aug 10th, 2006, 9:46pm » |
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Welcome Teresa.
Lots of caffeine. I think that is the deal with the redbull and the other energy drinks. Do you have Mountian Dew there? It is a softdrink with lots of caffeine. Others believe the taurine in the energy drinks have something to do with it.
Check out clusterbusters.com and OUCH.com more information on the left. I would suggest O2 if you havent tried it.
all the best and dont forget to breathe.
jb
Stuffing your head in the snowbank does not abort, but will feel really good. 
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RichardN
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Re: Just new and desperate to help hubby
« Reply #2 on: Aug 10th, 2006, 11:08pm » |
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Hi Teresa and Welcome to Clusterville
My wife found this site for me 2/02 . . . having 6-8 attacks per day and sometimes 3-5 at night . . . was a basket-case . . . always afraid of the next one . . ."how soon, how bad, how long?". Mis-diagnosis, non-working meds, "normal" tests. All too frequent experiences for so many of us.
This place gave me a name-for-the-pain, an explanation of what was causing the pain and the info/methods/weapons to battle our common beast . . . . and here the info you receive comes from people who truly know Dean's pain.
PLEASE . . . if he has not tried it, get an 02 rig set-up . . . NOW! Works for 60-70% of us to abort an attack, especially if used early-on in the attack . . . can kill him in minutes at Kip 2-3 . . . . waked with a Kip 5-6, 10-20 min if it's going to work. I cannot take triptans (Imagran) as I have high cholesterol and some arterie blockage . . . so could be (very) dangerous for me . . . 02 is my only abortive. . . . and a real miracle for many of us. Requires 15 lpm reg. and non-rebreather mask (the one with the bag) or clustermask. You need a script from your doc and you can copy info off this site to take to him . . . . hi-flo 02 IS recognized therapy for CH, though you might have to educate your doc in this regard.
Water, water, water . . .see "water X 3" link on left. I am convinced this has helped me and many others a great deal . . . . and ya can't beat the price.
Go to the medications board and read up on Kudzu (it is a viney plant that grows rampant in the south and many places arround the world). Besides the technical info, browse through the kudzu survey . . . .most interesting. Many have stopped their cycles early and most of the reports (haven't looked at it in a while) seemed positive.
To help the CH gurus on this board help Dean, try and list meds he's used (both preventive/abortive). Does he take a preventive med? Anything you can relate will help.
You have much to read and many questions to ask. You've come to the right place. There's always someone here, someone else afraid to sleep. . someone else who understands . . . and that means a lot. This board gave me my life back.
Welcome to the family . . . .GET SOME OXYGEN!
Be Safe, PFDANs
Richard
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kcopelin
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Re: Just new and desperate to help hubby
« Reply #3 on: Aug 10th, 2006, 11:37pm » |
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Welcome! If you're like I was, this place feels like some kind of gift from God-you are not alone, your husband is not alone and there is always hope.
About the O2-if you can get the prescription for the tanks, you can find a hi-flow regulator on ebay and the clustermask is available through this site somewhere-I'm sure someone will jump in with that info.
Hang in there, this is the beginning of a journey...just remember, there are some serious CH survivors here and sometimes we get kinda obnoxious. PLease don't take anything personally.
Glad you found us.
PFDAN for you husband and may you be cradled on the wings of angels-supporters make all the difference sometimes.
kathy
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Cookie
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Re: Just new and desperate to help hubby
« Reply #4 on: Aug 11th, 2006, 6:47am » |
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Thanks so much for your replies, we will definitely look into the O2. Mountain Due used to be available around these parts but not any more but Red Bull certainly. We've just got back from a night out and Dean swigged a can when he felt a shadow and happy to say seems to have stopped that one. Its 10.35pm and so far no headache so thats great. Seem to be coming on by 9.45pm and then hitting again at 2-3pm. Shadows hanging around most of the afternoon, poor thing. Has started to dred going to sleep.
We haven't tried much in the way of meds. Years ago used a wee pill under the tongue but can't for the life of me remember what that was called. Only other med has been the Imigran which is great but only can have 2 doses a day. Thats all well and good if you only have 2 attacks a day but we know from past experience that things can get much worse than that.
I have been into the health shop today. Curse being in a small town as we only really have one. The only Kudzu I could get was in a really strange form used to thicken food??? Wouldn't have the faintest idea what to do with that - I have enough problems cooking with foods I can pronounce! Anyway, the girl who served me was going to phone around for me which I really appreciate and get back to me. She has ordered some Taurine for me and we have some magnesium at home already so will start Dean on that. He is such a hun and never complains. Sooo wish these evil things would leave him alone!
It is sooooo awesome getting your feedback. Gisborne isn't that big a place and Dean has only ever come across one other person who has CH so this is great!
Thanks again, guys, and may you all be PF
Cheers, Teresa
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BMoneeTheMoneeMan
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Re: Just new and desperate to help hubby
« Reply #5 on: Aug 11th, 2006, 9:23am » |
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Hi Cookie, sorry you had to come lookin for us.
Caffeine is a vascular constrictor which helps a lot of us. Red Bull also has taurine, which is said to help the body absorb the caffeine more quickly. I just drink regular diet cola.
I also use cool water on my head, it seems to help. Rather than get in the shower, I just use the bathroom sink and use my hand to put the water on my eye. Sometimes I use ice, this helps too, but sometimes doesnt work.
PF wishes to hubby, like Rich said, try Oxygen, it helps the majority of us. It has to be pure, and it has to be at 10 to 15 litres per minute.
PF wishes
BMonee
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Sandy_C
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Re: Just new and desperate to help hubby
« Reply #6 on: Aug 11th, 2006, 1:20pm » |
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Hi Teresa, and welcome. I'm so sorry Dean is having a hard time of it now. You've found the right place to get information that may help him. Please encourage Dean to visit here himself. We're a crazy, sometimes obnoxious bunch, but we've got hearts of gold when it comes to helping other CH sufferers.
If your local health food shop does not have Kudzu supplements, here is a link where they can be bought online. During my last cycle, I used Nature's Way, but others used different supplements. Read through the Kudzu thread under the medications board for more info - I know - the thread is really really long - but worth reading.
Here's the link http://www.vitacost.com/productResults.aspx?Ntk=products&previousTex t=kutzu&ss=1&Ntt=kudzu
I'm sure there are probably other sites as well, but this is the one I could find quickly.
Please, both you and Dean, if you have a question, ask it. As I was told when I first got here, there is no stupid question except the one you didn't ask.
Wishing Dean PF days and nights.
Sandy
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Margi
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Re: Just new and desperate to help hubby
« Reply #7 on: Aug 11th, 2006, 1:28pm » |
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Hi Theresa, welcome. Sorry you have a reason to research this horrible affliction, but glad you found us!!
If cool water is helping him, what might work better is letting him hold a package of frozen peas or corn to his head. We use gel-filled ice packs but frozen veggies work well in a pinch. My hubby lays a pack on the back of his neck at onset and it really does help him stay calm and keep the pain to a manageable level. It also molds to the shape of his face so he can lay it directly ON the pain. Also, drinking ice water kind of chills him from the inside. Worth a shot. Mike's also found relief from putting snow in a baggie when he's on the road and can't get to his ice. It melts too fast but, it's easily replenishable in winter.
Oxygen has been a Godsend for us. It's got to be delivered correctly though, for it to be effective. Flow rate higher than 8 litres per minute, through a non-rebreather mask. The new clustermasx is great and we got ours from Ben within about 5 days of online request. www.clustermasx.com.
Lastly, keep an eye on the imigran. It CAN increase the frequency of attacks, even though it does abort. Supplementing with oxygen seems to downplay that side effect.
Always here if YOU need a hug too ok? Supporting ain't for sissies and we've got lots of real life live-in supporters here who are always ready to take your hand, ok?
Keep us posted, we're here to help!!
Margi
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| « Last Edit: Aug 11th, 2006, 1:30pm by Margi » |
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Sandy_C
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Re: Just new and desperate to help hubby
« Reply #8 on: Aug 11th, 2006, 1:28pm » |
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Hi Teresa, and welcome. I'm so sorry Dean is having a hard time of it now. You've found the right place to get information that may help him. Please encourage Dean to visit here himself. We're a crazy, sometimes obnoxious bunch, but we've got hearts of gold when it comes to helping other CH sufferers.
If your local health food shop does not have Kudzu supplements, here is a link where they can be bought online. During my last cycle, I used Nature's Way, but others used different supplements. Read through the Kudzu thread under the medications board for more info - I know - the thread is really really long - but worth reading.
Here's the link http://www.vitacost.com/productResults.aspx?Ntk=products&previousTex t=kutzu&ss=1&Ntt=kudzu
I'm sure there are probably other sites as well, but this is the one I could find quickly.
Please, both you and Dean, if you have a question, ask it. As I was told when I first got here, there is no stupid question except the one you didn't ask.
Wishing Dean PF days and nights.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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Cookie
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Re: Just new and desperate to help hubby
« Reply #9 on: Aug 11th, 2006, 5:05pm » |
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Thanks for your support guys. A bit of a nasty night for Dean. We were late to bed and thought he had skipped the first headache of the night but no, it had just relocated itself to another time slot so was woken at 1.15, about 15-30mins after going to sleep and then againat 7.15am this morning. The second one was really intense. I have just finished reading the Update on therapies by Todd Rozen which seems like an awesome source of info so we will be taking that off to the doctors with us when we go next week. We had no idea there were preventatives for CH! Our doctor has just been happy to keep supplying the Imigran but after the tip about it possibly causing an increase in frequency of attacks (thanks Margi) we definitely want to get some preventatives going.
What gets me about this cycle is the difference in the timing of the attacks. In previous cycles we could set our watch to them but this time they are much more random although always one between 1-2am. The great thing about this cycle is that it's lead to me finding you guys. We knew NOTHING!
I am off out of town for the next couple of nights so leaving Dean to cope with cluster headaches and a couple of teenagers alone! Will try to get hold of some Kudzu while I'm away and in the meantime hope that Dean goes OK without me.
Hope you all have a great painfree weekend where ever you are.
Cheers Teresa
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Margi
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Re: Just new and desperate to help hubby
« Reply #10 on: Aug 11th, 2006, 5:13pm » |
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Teresa (sorry I spelled your name wrong the first time)...
There are things that can help him get through the night unattacked. You can try benadryl or dramamine which both promote sleep as a side effect. One or the other, never both. Or, melatonin. Benadryl and dramamine (anti-seasickness drug) prevent the user from reaching REM sleep which is where most cluster attacks happen in the night. Melatonin, however, PROMOTES REM but, a better REM, if you will. All should be available without prescription and all have reported good success rate in helping clusterheads find some precious pain free sleep.
Preventatives definitely have their place and have helped a lot of people. However, they can prolong cycles and change patterns too. My hubby had his longest cycle ever when he first started with Verapamil and then, lithium as well caused him to stay in cycle (albeit much milder) for 9 months, last cycle. I don't think we'll go the prescription preventative method again for this reason. He's due to go back into cycle this fall, so I think we'll pursue other avenues. The "natural" or alternative preventatives, however, don't seem to do that.
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Cookie
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Re: Just new and desperate to help hubby
« Reply #11 on: Aug 12th, 2006, 4:43am » |
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Hi Margi
Thanks for all your info. So sorry to hear that your poor hubby had a 9 month episode! That sounds dreadful!
Melatonin is a prescription only drug here but we will be asking the doctor about it this week. Benadryl is a cough syrup - is that what you are meaning? I have never heard of Dramamine but will check it out for other names as alot of our drugs have different ones than yours.
I have found someone who can supply me the Kudzu. Can all the Kudzu, Taurine and Melatonin be taken together and with prescription drugs commonly used for clusters?
The Imigran shot Dean had this morning at 7.15am has just wiped him out. He looks terrible and says he feels worse than he looks so imagine he's feeling pretty rotten. I don't think the affects of the Imigran are so obvious when taken at night when he gets to sleep them off (hopefully).
Hope you are all having a great, safe, pain free weekend wherever you are.
Cheers, Teresa
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