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Topic: Sufferers wife looking for support!! (Read 742 times) |
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Dagg
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Sufferers wife looking for support!!
« on: Oct 3rd, 2002, 2:05pm » |
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my husband is in his 7th year and this is the worst! 6-12 ch's a day. he's had 4 imitrex inj in the last 18 hours. oxygen is just not doing the trick any more. any other suggestions???
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Cathi
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Re: Sufferers wife looking for support!!
« Reply #1 on: Oct 3rd, 2002, 2:19pm » |
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Dagg, I'm so sorry to hear about your husband- and you. He is lucky you're there beside him. I am very careful about adding anything other than a shoulder here....but I've read enough to know you're in the right spot......when you can, you & your husband need to get on this site together, and start absorbing the TONS of info posted here.... for right now, I'm willing to bet someone's gonna post right after me....
I'll be looking for your next post....and hoping you're both doing much better.....so sorry you're here- so glad you've found this group.
Cathi
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echo
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Re: Sufferers wife looking for support!!
« Reply #2 on: Oct 3rd, 2002, 2:28pm » |
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Ice packs. Water water water. Don't know what to tell you other than he is lucky to have you as his support. I'm sure the troops will come in with loads of suggestions once the afternoon and evening gang comes online.
Hang in there.
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Dagg
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Re: Sufferers wife looking for support!!
« Reply #3 on: Oct 3rd, 2002, 2:45pm » |
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thanks for your replies! does anyone have any experience with overusing imitrex?
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jonny
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Re: Sufferers wife looking for support!!
« Reply #4 on: Oct 3rd, 2002, 2:46pm » |
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Hi Dagg,
In order for us to help you you must tell us more, like is he chronic or episodic?, does he use any prevenitive meds? what meds has he tried?, what worked and what didnt?
............................jonny
Overusing Imitrex can kill you!!!!
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| « Last Edit: Oct 3rd, 2002, 2:48pm by jonny » |
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Dagg
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Re: Sufferers wife looking for support!!
« Reply #5 on: Oct 3rd, 2002, 2:56pm » |
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this is his 7th year . we have been able to control them with vodka and vicodin until now. we finally saw a nuerologist and they have tried verapamil-no help-he just started on inderal 3 days ago, but it has not kicked in yet. the 100% oxygen works sometimes but not always. Today he has had about 6 ch's and the oxygen is only partially taking it away. they did give him a 2 week dose of prednisone which stopped them dead but they won't give him anymore.
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jonny
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Re: Sufferers wife looking for support!!
« Reply #6 on: Oct 3rd, 2002, 3:07pm » |
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Pred is real nasty shit, I took it and was not able to walk for 2 days.
Ask the Neuro to try a combo of Lithium and Verapamil, im no doctor but ive been taking that combo everyday for over a decade and it stops 80% of my HA's from ever showing up.
My dose's are daily
Lithium 300 mgs twice aday
Verapamil 240 mgs twice aday
It's worth a try.........good luck
........................jonny
One last thing, Lithium or Verapamil on their own did nothing for me.....its only when I mixed them did I have great results.
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| « Last Edit: Oct 3rd, 2002, 3:10pm by jonny » |
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Cathi
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Re: Sufferers wife looking for support!!
« Reply #7 on: Oct 3rd, 2002, 3:16pm » |
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That's fantastic, Dagg-Now you've got help on the way...please read Jonny's post.....also, try Echo's suggestion....
Kep posting, Girl- you'll get a lot of response if you keep posting- Poor Dagg- poor Dagg's wife.....keep your puter on!!!
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Dagg
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Re: Sufferers wife looking for support!!
« Reply #8 on: Oct 3rd, 2002, 3:17pm » |
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jonny-how does the lithium and verapamil affect your everyday life? are you able to work and all that? how does it make you feel physically? also, just spoke with the doc and now they are going to give him a narcotic for the pain since he is way over on his imitrex
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Margi
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Re: Sufferers wife looking for support!!
« Reply #9 on: Oct 3rd, 2002, 3:17pm » |
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Vodka and Vicodan? Yikes 
Jonny's combo sounds a WHOLE lot safer and WAY less prone to provoking attacks. Alcohol is a VERY common trigger, especially for episodics.
I really can't add much to what has already been suggested here - it sounds like he's peaking (mid-cycle, right?) - could be that you've reached the point where the only thing that will help is time. This cycle WILL end, take heart.
You could try dramamine at bedtime to get him through the night. It helps some folks, but nothing helps everyone. It's too bad the doc won't let him do a full prednisone burst - Jonny's right though - it really IS nasty stuff, but it has broken a lot of cycles here. Might you consider a more cluster knowledgeable neuro? There's a list of them under Recommended Doctors on the OUCH website.
My hubby's latest cycle ended with the lithium/verapamil combo (however verap alone did nothing for him). He was up to 600 mgs lithium and 480 Verap when the cycle broke. He really didn't have any noticeable side effects from that combination. Truthfully, we're not sure if it was the meds that ended his cycle or if it just was time for it to be over.
And, please feel free to visit the Family Services team - we're over at the OUCH site(www.clusterheadaches.org or the OUCH button on the left here). We are a group of supporters who walk in your shoes. We also have a forum here called Supporters Corner. Welcome to the family 
Hang in there.
p.s. i just read your update: narcotics really won't break a cluster cycle at ALL. Please think about talking to another neuro?! narcotics mask the pain, sure, but they are also highly addictive. PLEASE be careful with the narcotics!! In MY opinion, they should only be used as a last resort (i'll probably get flamed for that, but i don't care.)
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| « Last Edit: Oct 3rd, 2002, 3:22pm by Margi » |
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Dagg
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Re: Sufferers wife looking for support!!
« Reply #10 on: Oct 3rd, 2002, 3:25pm » |
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yes vicodin and vodka was nasty! when he is in a cycle he doesn't drink at all, but when the ch gets full blown and we have nothing else the vodka at least lets him pass out. he has been in this cycle for 12 weeks now and it is definately the longest. it usually starts end of summer / early fall. i keep waiting for it to end but it seems like this one wants to hang in a little longer. maybe it's because it skipped him last year. who knows! i'm just so glad to have found this site. the first year i just thought he was being a big baby. NOT ANYMORE!!!! i'm old hat to the fuck you , i love you syndrome and now i do my best to become invisible during an attack!
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oringkid
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Re: Sufferers wife looking for support!!
« Reply #11 on: Oct 3rd, 2002, 3:26pm » |
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Dagg, how long do your husbands attacks last? ie 30min, 2hours? or less? 12 attacks per day is kinda on the high side, but probably not unheard of. And as Margi said, alcohol is a definite trigger for an attack for probably 90% of CH'ers.
The reason I ask about the duration of the individual attacks is because there is another type of headache, called CPH which has more frequent attacks per day, but of shorter duration. That type is normally easily controlled with Indocin (I think, is that right guys?)
Sherry
(modified to delete stupid question that was answered in not one but 2 posts! Duh! Sorry!)
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| « Last Edit: Oct 3rd, 2002, 4:00pm by oringkid » |
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Dagg
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Re: Sufferers wife looking for support!!
« Reply #12 on: Oct 3rd, 2002, 3:30pm » |
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i know the narcotic will not break the cycle but what else can we do for the pain. i'm afraid he'll hurt himself. also- does anyone know of a nuero in humboldt county calif. or one that would talk to us over the phone or via e-mail? P.S. we also have no health insurance and are just above the income level to get any assistance. 
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Dagg
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Re: Sufferers wife looking for support!!
« Reply #13 on: Oct 3rd, 2002, 3:34pm » |
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his normal routine was about 2 per day, once a year, for about 3 months. this cycle started out the same way. we are in week 11 or 12 now-they all seem to run together! 3 weeks ago they jumped from 2 a day to anywhere from 6-12 a day. he did have one 24 hour break this week and now he is back to 4-8 a day. half come in the middle of the night and the other half generally come betwen 6am and noon.
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Margi
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Re: Sufferers wife looking for support!!
« Reply #14 on: Oct 3rd, 2002, 3:37pm » |
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Hi again, Dagg...
click the OUCH website button on the left here. In the first pull down menu above the map, there is an item called Recommended Doctors. They are organized by state. You might try contacting one in your area and plead your case to them. Any cluster neuro worth their salt KNOWS the urgency of a clusterhead, mid-cycle. Get rude on the phone if you have to, don't let a receptionist put you on a waiting list.
As to pain relief...my husband uses those gel-filled ice packs that never really quite freeze. I put one in a tea towel, or cloth gift bag, and he lays it on the back of his neck at the onset of his attack. It really does help him to stay calm (which, in turn, keeps his blood pressure to a dull roar and therefore, lower pain). Frozen peas or frozen corn do the same thing in a pinch if you don't have the ice bags, because they mold themselves to his face and he can apply it right on the site of the pain if it's not helping on the back of his neck.
Sherri's (oringkid) got a good question though. 12 attacks in a 24 hour period IS high, although not unheard of. The real tell-tale between clusters and CPH is duration. How long DO his attacks last? Indocin, indomethacin have almost a 100% cure rate for CPH.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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kathy copelin, ch.com 8/8/06
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jonny
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Re: Sufferers wife looking for support!!
« Reply #15 on: Oct 3rd, 2002, 3:42pm » |
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Dagg,
The dosage of Lithium takin for CH is way below that takin for manic depression so there is no real bad sideffects. Like I said ive takin this combo every single day for over a decade and I still have my company and a quater million dollar home.
.................jonny ;D
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| « Last Edit: Oct 3rd, 2002, 3:44pm by jonny » |
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Dagg
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Re: Sufferers wife looking for support!!
« Reply #16 on: Oct 3rd, 2002, 3:46pm » |
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i forgot to say that his ch's can last as long as 60-90 minutes if he does not catch them in time. the imitrex injection works in 3 minutes and the 02 can sometimes take up to an hour or more.
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ShariRae
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Re: Sufferers wife looking for support!!
« Reply #17 on: Oct 3rd, 2002, 3:47pm » |
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Dagg,
So sorry to hear that you & hubby are going through this. Stick around though, the knowledge & support here is unmatched. I hafta wonder..although you state that the vodka helps hubby pass out during the pain, it may also be causing a secondary headache as it is a trigger for a lot of people in cycle. I would try to convince him to go without it & see if it at all decreases the number of h/a's he is getting. Just know we are here & will do all we can to help
Huggzz
Shari
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oringkid
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Re: Sufferers wife looking for support!!
« Reply #18 on: Oct 3rd, 2002, 3:49pm » |
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Well that does sound like CH. 
Does he use a non-rebreather mask with the oxygen and I think it is around 12 to 15 lpm?
Sherry
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Dagg
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Re: Sufferers wife looking for support!!
« Reply #19 on: Oct 3rd, 2002, 3:54pm » |
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i checked out the ouch site and found a doctor 3 hours from us. i e-mailed them and will hopefully get a response. i have to go check on my hubby now and i don't have a computer at home, so i will check back in as soon as i can. thanks again for all the info and support!!!!
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Margi
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Re: Sufferers wife looking for support!!
« Reply #20 on: Oct 3rd, 2002, 3:55pm » |
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oh man, Dagg - 60 - 90 minutes attacks. yep, that's clusters. 
we've been where you are, honey - BIG hugs. this time in a cluster cycle is the absolute worst. no sleep, relentless attacks, patience wearing thin, walk on eggshells, hate the world. Please know that neither one of you are alone with this now. Your hubby probably can't stand to sit at the computer right now, but please tell him he is NOT losing his mind, that there are so many more just like him. It really does help to know that there's an army of us out here.
Please feel free to email me directly at moxie_miss@hotmail.com if YOU need a shoulder. Being a supporter takes everything we've got sometimes. Feel free to yell, scream, cry, whatever you need. We're here for you.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Dagg
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Re: Sufferers wife looking for support!!
« Reply #21 on: Oct 3rd, 2002, 3:59pm » |
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had to make 1 more reply-- the vodka is an old remedy. we have not used that this year, now that we have a neuro. thank goodness for that!! he does use a re-breather mask at 12-15. thanks again! talk to you all soon!
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don
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Re: Sufferers wife looking for support!!
« Reply #22 on: Oct 3rd, 2002, 4:03pm » |
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The prednisone ussually becomes ineffective as the dosage gets lower unless a preventative at a theraputic level is started previous to or at least coincides with the prednisone protocol.
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Linda_Howell
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Re: Sufferers wife looking for support!!
« Reply #23 on: Oct 3rd, 2002, 4:14pm » |
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Have to add the Yikes to Margi's reply...Vodka and Vicodin???????? OMG! does he have a death wish?
Hon, take that Vicodin away from him right now and save it for something else besides clusters. We all realize that we will do whatever works for this pain, but really this will not help. No wonder if he's getting that many per day.
I live in Shasta Co. will be in Humbolt Co. on the 11th, 12th, and 13th. for a car show in Crescent city...e-mail me and maybe we can get together.
calientev8@snowcrest.net
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Cathi
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Re: Sufferers wife looking for support!!
« Reply #24 on: Oct 3rd, 2002, 4:44pm » |
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Hey, Linda-
Crescent City Cruise-in, huh????Would YOU believe this is the first year we will be missing it in 10 years? Been there, done that, got the t-shirts. We get to sit up on the knoll, with all the Corvettes- and I CAN'T believe we're missing this one, now..... now, the guy questions....what do you have? daily driver? have you done the work, or is it a REAL trailer queen- girl question- WHAT COLOR???
Whooo- this is cool!
To everyone who posted- Thast was amazing! You guys just jumped in and gave that couple so many different avenues- and such great help....I'm in awe!
We'll talk before then ,but have an awesome time in CC- BTW- great casinos 5 mins.....oh shoot, you live WHERE? never mind....
Cathi
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