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Title: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 2:05pm 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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Title: Re: Sufferers wife looking for support!! Post by Cathi on Oct 3rd, 2002, 2:19pm 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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Title: Re: Sufferers wife looking for support!! Post by echo on Oct 3rd, 2002, 2:28pm 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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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 2:45pm thanks for your replies! does anyone have any experience with overusing imitrex? |
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Title: Re: Sufferers wife looking for support!! Post by jonny on Oct 3rd, 2002, 2:46pm 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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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 2:56pm 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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Title: Re: Sufferers wife looking for support!! Post by jonny on Oct 3rd, 2002, 3:07pm 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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Title: Re: Sufferers wife looking for support!! Post by Cathi on Oct 3rd, 2002, 3:16pm 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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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 3:17pm 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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Title: Re: Sufferers wife looking for support!! Post by Margi on Oct 3rd, 2002, 3:17pm Vodka and Vicodan? Yikes :o 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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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 3:25pm 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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Title: Re: Sufferers wife looking for support!! Post by oringkid on Oct 3rd, 2002, 3:26pm 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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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 3:30pm 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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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 3:34pm 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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Title: Re: Sufferers wife looking for support!! Post by Margi on Oct 3rd, 2002, 3:37pm 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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Title: Re: Sufferers wife looking for support!! Post by jonny on Oct 3rd, 2002, 3:42pm 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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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 3:46pm 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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Title: Re: Sufferers wife looking for support!! Post by ShariRae on Oct 3rd, 2002, 3:47pm 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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Title: Re: Sufferers wife looking for support!! Post by oringkid on Oct 3rd, 2002, 3:49pm 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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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 3:54pm 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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Title: Re: Sufferers wife looking for support!! Post by Margi on Oct 3rd, 2002, 3:55pm 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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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 3rd, 2002, 3:59pm 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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Title: Re: Sufferers wife looking for support!! Post by don on Oct 3rd, 2002, 4:03pm 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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Title: Re: Sufferers wife looking for support!! Post by Linda_Howell on Oct 3rd, 2002, 4:14pm 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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Title: Re: Sufferers wife looking for support!! Post by Cathi on Oct 3rd, 2002, 4:44pm 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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Title: Re: Sufferers wife looking for support!! Post by RevDeFord on Oct 3rd, 2002, 6:32pm The one thing I have tried that has been 100% effective was a nasal shot of lidocain from the doctor in the emergency room. Course, I felt like I was drowning in the crap, but once it got in, it completely stopped my attack. In fact, didn't have another one for a year after that - that was probably coincidince. This has only been done once to me, so 100% is based only on one time, but I have to wonder, if the shot of lidocain in the nose was so effective, if there is not some way of getting some lidocain or other local anesthetic in a syringe without a needle and dripping it into the nostril. I am in a mild episode right now, and the oxygen and imitrex almost always work, but I am going to talk to my doctor about this possibility. It was a neurologist that was called in when I was in the ER that performed this procedure on me. He said he had never heard of it being done and had never done it, but he felt it was worth a shot. - no pun intendid. |
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Title: Re: Sufferers wife looking for support!! Post by kim on Oct 3rd, 2002, 7:21pm Hi Dagg, Being episodic and trying to nip the right combo with the right timing can be a merri-go-round that has no clear cut answers. I went through so many trials with preventatives and gave up (sometimes I yelled like a maniac at my doc/docs) seemed everything was a BUST. Can only tell you to hang tight. Don't give up so easy. As far as the 02 - are ya using right liters along with non-rebreather mask? Check it out. Just the tank with the nose plugs did nadda for me. also, with the preventatives, must be willing to play with dose and give time. I always gave up after a couple of days (NOT PATIENT). Best wishes to you and partner. Hope it gets better soon. Kim |
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Title: Re: Sufferers wife looking for support!! Post by Linda_Howell on Oct 4th, 2002, 2:09am trailer queen....never! daily driver....of course. color....pink \67 Mercury Caliente.....shut up Bob G!!!~~ Now........dagg. if you want to call me, I'd be more than happy to talk to you......e-mail me at calientev8#snowcrest.net |
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Title: Re: Sufferers wife looking for support!! Post by Linda_Howell on Oct 4th, 2002, 2:14am Cathi, DID YOU SAY CHEVY? Linda |
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Title: Re: Sufferers wife looking for support!! Post by Jim R on Oct 4th, 2002, 6:01am Hi Dagg, Like you husband, before appropriate treatment, I had up to 13 CH/day -agony - one would end while the next was beginning - I was completely disabled. Then sought medical help and had a long remission on verapamil alone. Then, last year they came back with a vengeance while I was still on verapamil. My neuro put me on lithium (still with the verapamil, now increasded to 240 mgs/day) - 300 mgs. of lithium did nothing, 600 - nada, 900 - I was still getting them, 1200 - BINGO - they stopped dead in their tracks, but 1200 mg. of lithium IS bipolar dosage and I had a lot of nasty side effects, but got through the rest of the cycle PF. Then, this year, the same combo didn't work at all, in fact, went toxic on the lithium and started havng uncontrollable nausea and vomiting along with KIP 10 CH's and ended up going to the ER three times where they injected me with massive doses of demerol (narcotic) and phenergan (anti-nausea), which did help - mask or whatever. Then about a month ago, my neuro put me on catapres (clonodine) .2/mg/day and doubled my verapamil again (to 480/day) - nothing, still had horrendous CH's every day and night, then he doubled the catapres again to .4/day and within a week, I had no CH's and have only had a few breakthroughs since, but nowhere near what I was having, and O2 takes care of those (which it didn;t always do before). Just one more option that might work from a guy who's been refractory to a lot of different treatments. Good luck to you and you husband and wishing him to be PF soon, and some relief for you. Jim R |
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Title: Re: Sufferers wife looking for support!! Post by RevDeFord on Oct 4th, 2002, 6:20am Dagg, You said that the oxygen takes an hour. I know that there are some issues with oxygen saturation that you need to be aware of. If the doctor has your husband at 100% at 12-15 litres per second for an hour, you might need to verify how much is too much. I was sternly warned from my doctor, but it has been so long ago, I can't remember how much he said. :o |
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Title: Re: Sufferers wife looking for support!! Post by jonny on Oct 5th, 2002, 4:14pm 02 flows at liters per minute, REV....not seconds .................jonny |
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Title: Re: Sufferers wife looking for support!! Post by Svenn on Oct 5th, 2002, 5:05pm 100% oxygene at 12-15 litres per second for an hour=hurricane Its 10-12litrle/minute,and it should start working within 15-20 minutes if it should help This is what helps me :Verapamil Retard 120mgX5-7/daily during cycle Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree Prednisolone in high doze for 10 days 80mg then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway |
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Title: Re: Sufferers wife looking for support!! Post by RevDeFord on Oct 5th, 2002, 8:17pm As I said, if he takes 100% at 12-15 litres per second for an hour, you may have a problem with oxygen saturation! ;D That was a brain fart on my part. |
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Title: Re: Sufferers wife looking for support!! Post by Marc on Oct 5th, 2002, 8:20pm I swapped emails with Dagg Friday afternoon. Her husband is doing better. They don't have PC at home so she will check in from work on Monday. Marc |
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Title: Re: Sufferers wife looking for support!! Post by Geotan on Oct 5th, 2002, 9:35pm Hi, my husband had a bad deal with the imetrex. When we called the pharmacy to keep refilling they told us he was using to much. It made him really ill and it stopped working! He was also on verapmil and sansert, the sansert is very $$$$ so we read up on the herb feverfew it has some of the same properties as sansert. We have had awesome results, from 5 to 8 a day to none in almost 3 weeks!!!! He has had some shadows but no big deal. It has been a blessing to us, hope the info can help you! |
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Title: Re: Sufferers wife looking for support!! Post by Ree on Oct 5th, 2002, 11:08pm Hi I have been thinking about trying that Feverfew again... How much have you taken to have such success and for how long...??? I would appreciate some information if you want you can email me Ree16angel@aol.com thanks in advance... me |
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Title: Re: Sufferers wife looking for support!! Post by BobG on Oct 6th, 2002, 3:00am Linda H, 67 Mercury Calientes are cool. A little too new for me. I like street rods. I'm searching the catalogs now for parts for a deuce roadster or maybe a track-T. Two months ago I had all the parts to build a Total Performance pro-street roadster. Paid $32 grand and had an offer for $36 grand before I even opened the crates. Goodbye pro-streeter! Have fun in Crecent City. |
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Title: Re: Sufferers wife looking for support!! Post by Drk^Angel on Oct 6th, 2002, 3:50am I tried feverfew for a couple of weeks and I'll never make that mistake again. I don't know if it interacted with the verapamil or what, but it just made things worse. PFDAN........................... Drk^Angel |
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Title: Re: Sufferers wife looking for support!! Post by Cathi on Oct 6th, 2002, 8:54pm Hey, Linda Howell- I COULD take this off the board- but, well, hey! I guess i'm guilty as charged....yes, a Chevy......I am the one sleeping in the passenger seat of a "76 Corvette Stingray- candy-apple red (so my husband tells me)- NO TRAILER QUEEN HERE- and we keep up with the pack, too!!! What's a few rattles & leaks, when one owns something that's been on the road longer than one has been able to drive........I'm sleeping in a legend! What club are you with? Next year, ya wanna meet at the sock hop? I still have my saddle oxfords- wear them every year at the dance! Ohhhh, now I'm really sorry we're not gonna make it this year!! |
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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 7th, 2002, 2:20pm Hello to all! This is Dagg. Just wanted everyone to know that the weekend went quite well. Just a couple of very mild ch's that the 02 wiped out rught away. We're pretty sure it is the Inderal kicking in and not the end of his cycle. There are still a few shadows going on. He was actually able to go to work for the first time in 3 1/2 weeks though. YAY!! Thank you all so much for the great info and all the support. Just knowing that we are not alone makes it all so much easier. I will post as much as possible. I'm close to having my home PC problem taken care of. You are all really great people and we are very thankful to have found you! |
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Title: Re: Sufferers wife looking for support!! Post by Margi on Oct 7th, 2002, 2:31pm Hey Gal!! So good to hear you two found some pain freedom this weekend. :) Please keep us posted. Hugs, |
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Title: Re: Sufferers wife looking for support!! Post by Tim_w on Oct 13th, 2002, 6:32am Hi Dagg, I have had C/H for 21 years can I retire at 25 LOL ??? been chronic for 3 years. I took Imitrex inj for 6 years now I cant take it anymore. Just 1 inj causes rebounds that are that are out of this world! I take 720 mil of Verapamil aday and Maxalt /begining on to work. 02 did nothing for me. I have not found the right combo yet , hope your hubbie can !Hope you and your hubbie have pain free days and nights! when hes in pain your in pain Tim |
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Title: Re: Sufferers wife looking for support!! Post by Linda T on Oct 13th, 2002, 6:39pm Hi Dagg, glad to hear that your husband is feeling better. His story sounds very much like mine. This past cycle (which started last November) pretty much started like my other cycles. 1 hit a day - 1-2 hours - kip 7 and up. 8 weeks into the cycle it got just about where your husband is (or was). Maybe as many as 8 hits a day. Shorter duration but very intense. I too started Inderal LA in April. I have had nothing but mild shadows since. It's been a godsend. I am happy to hear that your husband seems to be having luck with it too. Wishing you all PFDAN always, Linda T |
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Title: Re: Sufferers wife looking for support!! Post by Dagg on Oct 14th, 2002, 10:52am Hello to all! Just wanted to let you all know that my hubbie is doing great. Either the Inderal (80 mg a day) is working or we're at the end of the cycle. To soon to tell. My hubbie met Linda the other day and they had a good visit. Thank You Linda!!! It was so good for him to meet someone else with this! Hope everyone else finds relief soon! My visits to this site will be off and on until I get my PC problems taken care of, but I will stay in touch. Thanks again to all! Dagg |
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Title: Re: Sufferers wife looking for support!! Post by Linda_Howell on Oct 14th, 2002, 2:13pm Yes, Daggs husband Robert and I met in Eureka on my way to the car show. Sorry it had to be in a Brewery, Robt. LOL It was the only place I knew how to get to. Also, remembering how great it was for me to finally meet another clusterhead , I was happy he and I were able to meet. Not that I'm anything special, but it's a wonderful feeling to talk to someone who understands exactly what you've gone through. Robert is a really neat guy and I'm hoping I was able to give him a few tricks that he may not have learned or even thought of. Hope the Inderol keeps working Robert....Linda Howell |
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Title: Re: Sufferers wife looking for support!! Post by Charlie on Oct 14th, 2002, 4:59pm Glad things are better and I just wanted you to know than Inderal was the drug that worked well for me. Take care. Charlie |
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