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Tom_Thumb
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MEDS ARE BREAKING ME
« on: Feb 1st, 2005, 12:22pm » |
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HELLO AN YOUR THOUGHTS WILL BE THANKFUL. I HAVE BEEN TO THE DOCTOR THREE TIMES IN THE LAST WEEK . NOW THE VERAPAMIL 120MG TABLET SA WAS MY FIRST USING WITH NEURONTIN 300MG CAPSULE AN IMITREX 20MG NASAL SPRAY . BEEN TAKING DAILY SINCE1/08/05 ON 1/28/05 STARTED PREDNISONE TABLETS 5MG 6 ,5,4,3,2,1,THE LAST ONE OF THOSE WILL BE TOMORROW. NOW THINGS HAVE TURNED OUT VERY BAD SO FAR .I AM BEING HIT EVERY TWO HOURS LIKE THE CLOCK SAYS . THEY ARE BAD K8 TO K10. I FORGOT TO SAY THE 02 AT 15L IS A BIG HELP 8 TO 12MINS. GONE !!!I WENT BACK TO THE DOCTOR 1/31/05 HE CHANGED THE MEDS TO VERAPAMIL PM 200MG CAPSULES (VERELAN PM CAPSULES 200MG )IS THAT BETTER ????HE GAVE ME SOME ZOMIG-ZMT 5MG TABLETS [SHOULD I USE THIS HE SAID BETTER THAN IMITREX NEVER USE IT  WANTS ME TO START TAKING THE PREDNISONE 10MG DAILY ( NOT ENOUGH DO YOU THINK )FOR THE MELATONIN I BEEN TAKING 9MG 45 MIN BEFORE BED TIME AN I HAVE NOT BEEN TO SLEEP FOR MORE THAN 20 MINS YET . SORRY FOR THE LONG NOTE HERE .BUT I HAVE TRIED IT ALL NOTHING IS WORKING FOR ME MY INS SUCKS BADLY AN I AM KILLING MY BANK ACCOUNT . FOR 6 IMITREXS $173.51 LAST ME 2 DAYS . THE DOCTOR CHANGES THE OTHER AT MY COST OF 100 DOLLARS . THE 02 COST 200 DOLLARS FOR THE FIRST TANK AND 25 DOLLARS FOR REFILLS . WELL YOU GET IT THREE WEEKS 1800 DOLLARS AN NO NO RELIEF HELP PLEASE THANKS LOVE YALL
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karma
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Re: MEDS ARE BREAKING ME
« Reply #1 on: Feb 1st, 2005, 12:39pm » |
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Tom,
First of all be careful mixing the trex and the Zomig. You need at least 24 hours inbetween the different meds.
I can't see any benefit in continuing to take the pred. at that dose.
It may be hard to do but If I was in your shoes I'd quit taking all the meds. and concentrate on the 02 and drink lots and lots of water. It sounds like it can't get much worse and the meds aren't doing it for you.
discuss it with your doc first.
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LeLimey
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Re: MEDS ARE BREAKING ME
« Reply #2 on: Feb 1st, 2005, 12:48pm » |
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Oh Tom,  you are having such a crappy time of it. I'm so sorry.
Did the pred taper help at all? Alot of people here swear by that. I haven't used the Zomig but apparently it is much better than imitrex in that it has a longer half life. I wish I could help more, I'm thinking of you though and if there is anything I can do you only have to say
Helen
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Tom_Thumb
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Re: MEDS ARE BREAKING ME
« Reply #3 on: Feb 1st, 2005, 12:49pm » |
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WATER ,WATER ,WATER I FILL LIKE A WHALE IN THE OCEAN . I DRINK 3 TO 4 GALLONS A DAY NO LIE . SO NO MEDS JUST 02 COULD BREAK THE CYCLE YOU THINK . I HAVE NEVER HAD THIS HARD OF A TIME TO GET JUST A LITTLE RELIEF. LETS VOTE I WILL TRY IT CAN'T HURT
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Tom_Thumb
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Re: MEDS ARE BREAKING ME
« Reply #4 on: Feb 1st, 2005, 12:53pm » |
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THE PREDS. DID HELP FOR ONE DAY 1/30/05 WENT FROM EVERY 2HOURS TO EVERY 6 HOURS NOW BACK TO TWO HOURS . NOT WORKING NOW EITHER JUST GOT SENT HOME MY MED. SAID NOT TO COME BACK UNTIL I GET RELIEF.
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LeLimey
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Re: MEDS ARE BREAKING ME
« Reply #5 on: Feb 1st, 2005, 1:02pm » |
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If it helped at the higher does maybe you need a longer taper, its worth trying to talk over with your doc. The water is a good suggestion from Karma as is his warning about mixing zomig and imitrex. Keep going with the O2 as well. Have you considered talking through lithium with your doc? There are posts here about pulsing lithium by Chedden which might help you and I know Margi's husband had a lot of success with that too. There IS something here that will help you, we just have to help you find it 
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Tom_Thumb
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Re: MEDS ARE BREAKING ME
« Reply #6 on: Feb 1st, 2005, 1:18pm » |
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Spoke with the dr about the lithium yesterday .HE said that would be the last chance not to good for our bodies
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JJA
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Re: MEDS ARE BREAKING ME
« Reply #7 on: Feb 1st, 2005, 1:29pm » |
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Probably too late for this cycle, but check out www.clusterbusters.com for the next one.
Jesse
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sandie99
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Re: MEDS ARE BREAKING ME
« Reply #8 on: Feb 1st, 2005, 1:32pm » |
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Tom,
I am so sorry the beast is torturing you so bad right now....
I hope that you'll find a combo which works. I once managed to abort CH with ice cream, once with desperate willpower (and repeating "I'm free from all the pain" zillion times). Usually maxalt works for me.
My latest neuro said that sometimes it takes a long time to find the perfect, working medication. I pray that it'll happen with you soon.
Best wishes & PFdays,
Sandie
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Lobster
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Re: MEDS ARE BREAKING ME
« Reply #9 on: Feb 1st, 2005, 6:31pm » |
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Is your Imitrex in autoinjectors?
Read over here under 'imitrex tip'.
<<<<---- As a clusterhead, you may be able to stretch your supply 2x to 3x.
Next time you are at the doctors ask for your trex in vials & syringes.... easier to control your dosage. One vial gets me 2.5-3.0 doses (even though they are 'single dose vials').
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Kris_in_SJ
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Re: MEDS ARE BREAKING ME
« Reply #10 on: Feb 1st, 2005, 6:49pm » |
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I'm with Rock on this one. If the Trex NS isn't workin well, you probably need injects (for the ones that O2 can't knock out). Unfortunately they're expensive too! Make friends with the nurses at the office - it pays off in free samples.
Also, at 200mg, your Verapamil is probably much too low in dose to help with your cycle. I've never found relief below 480mg/day and many people here take more than that. The good thing ... Verapamil is inexpensive. And no - low dose Prednisone will not help your CH!
My heart is hurting for you. Hang in there.
Kris
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Tom_Thumb
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Re: MEDS ARE BREAKING ME
« Reply #11 on: Feb 1st, 2005, 7:49pm » |
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Rock the imitrex I have are the nasal spray 20mg it really works .JUST that high cost. Love all the nurses an beleive me they love me . Thank god for all the ladies . IT'S not that much of what I need at the dr office they just do not seem to have it when i am there.
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E-Double
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Re: MEDS ARE BREAKING ME
« Reply #12 on: Feb 1st, 2005, 8:03pm » |
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Zomig was my first abortive used...it worked like magic then stopped...been using trex since...I may go back to zomig just because it sounds cooler
You could try the shots & stretch them to last......
If lucky I can get 3 jabs out of one injection....makes it cheaper too....also ask for samples..my doc hands them out like candy if I'm good haha
Hang in there brother!
Take care man... sounds like you're peaking so hopefully you will ease up soon.
Keep trying the melatonin
Best,
Eric
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Kris_in_SJ
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Re: MEDS ARE BREAKING ME
« Reply #13 on: Feb 1st, 2005, 8:06pm » |
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There's a nurse at my doc's office I adore. When they're out of something during my visit, she always says, "call me in a week or so. We'll probably have some then." I always do.
When the costs are breaking you, it helps to talk to both the doc and his/her nurses about it. It does pay off. My current stash for next cycle is totally composed of free Trex doses (which I am carefully storing in my cool basement).
I'm not making light Tom - the costs of the drugs we need to make it through a cycle are beyond horrible. We max our credit cards, take out loans, and still have problems paying for what we need - unless we have one of those unlimited $20 co-pay insurance plans. I sure don't.
Hang tough. Many hugs to you,
Kris
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forgetfulnot
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Re: MEDS ARE BREAKING ME
« Reply #14 on: Feb 3rd, 2005, 12:29am » |
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After many attempts my Ins. Co. has allotted me 16 Imitrex Inj shipped as 48 shots for a three month supply. These things cost about $60.00 at the local pharmacy. On the other hand they rejected an anti nausea med (caused by another condition) At $25.00 ea for no reason.
?
Lee
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debz
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Re: MEDS ARE BREAKING ME
« Reply #15 on: Feb 3rd, 2005, 1:37am » |
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Tom,
I sincerely hope you are doing better, no one should have to suffer as you are.
Ask your doctor to help you with insurance issues, they can write letters to the provider with all the right words "medically necessary, only treatment available, meds cheaper than repeated ER visits, etc." It might work --I am going this route now. Also, your employer or union may have a health advocate type person that can help you navigate the insurance bureaucracy with appeals and exceptions. I've heard of that type of thing working for other conditions.
Also, if your docs don't have samples, perhaps they would call their local drug sales reps and request some and then pass them on to you--they must know how urgent this is for you, and maybe they will oblige.
It is so unfortunate that we have to deal with this crap when we are least able.
Best, best, best for a restful night,
Debbie
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Bob_Johnson
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Re: MEDS ARE BREAKING ME
« Reply #16 on: Feb 3rd, 2005, 12:33pm » |
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The Pred starting dose rangess from 10 to 100mg. If you don't start to see relief by the second dose, it's likely you need to start over at a high dose. Effective dose will give rapid relief.
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Bob Johnson
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Margi
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Re: MEDS ARE BREAKING ME
« Reply #17 on: Feb 3rd, 2005, 1:07pm » |
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Hi Tom - so sorry you're still having such a rough time.
OK, here's my take on it.
1. NEVER mix imitrex and zomig. It can be fatal and your doctor should be shot for recommending it!! There's a lady here who suffered a heart attack from doing just that. you MUST wait 24 hours between mixing these two triptan meds!!!
2. The pred you did wasn't high enough. But, even if you do go higher, it will only give you a break during that high dosing period and you WILL get hit when you taper off of it.
3. Your verapamil dose isn't high enough. Whatever you do, though - do NOT quit it cold turkey. You can cause yourself to have blood pressure spikes by doing that. Average dose for clusterheads is around 480.
4. Your doctor's worry about lithium being hard on the body is ... well, quite surprising. There are folks here who've been on it for years with little to no side effects. You do need to go for blood screening to make sure your liver is tolerating it well but most people do (tolerate it well).
5. If I were your supporter, I'd push for you to up the verapamil dose and combine it with lithium - that's a popular combo for clusterheads and your doctor SHOULD know about it!! (ever thought of changing doctors??)
6. If you do stop the verapamil (decrease one pill every three days)....then by all means try the lithium pulsing that my husband is doing. He's been in cycle a month now and three weeks ago, started 300mgs of lithium before his biggest hit of the day (which was usually an hour after he fell asleep). By killing THAT attack, it seems the other attacks through the day slowly died off. We had to add 300mgs in the morning for him (because there was a 2nd pesky attack that kept breaking through), but now he's able to get through the days and nights without much more than a shadow after supper. He blows that one away with oxygen and imitrex 20mg nasal - the stuff you already have.
So, Tom - my recommendation to you would be to become a huge pain in your doctor's ass and get him to let you try more verap (unless you already have low blood pressure) and add in a little lithium to the mix. If that doesn't work for you, then taper off the verap and just do the lithium.
Hope some of this helps you, Tom - we're pulling for you!!
Hugs,
Margi
p.s. we checked with my hubby's neuro and she said he doesn't need to have any blood tests for lithium intolerance unless he stays on it longer than two months/or goes any higher than his current 600mg dose. Tom, the ONLY side effect he's had from the lithium is that he's not getting cluster attacks. I think that's a side effect worth risking!
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Kris_in_SJ
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Re: MEDS ARE BREAKING ME
« Reply #18 on: Feb 3rd, 2005, 8:04pm » |
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Well said, Margi!
Kris
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Tom_Thumb
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Re: MEDS ARE BREAKING ME
« Reply #19 on: Feb 3rd, 2005, 8:59pm » |
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Thanks for all the info. I love all of you. Ihave not been here in a few days . WOW I have had a break from the 2 hour cycle tues. I was sent home from work at 10:00am bad morning k8 k10 two times. So I went by the drug store again for more imitrex and preds.at $182.51 agot out of there. so now Iam at home called for more 02 . Great they brought 2 tanks this time. at $50:00 so now I going to kick the beast in his ass once more. THINGS STARTED OFF BAD . I REMEMBERED that the dr had gave me some zomig 5gm . So now I must wait or stay with the imitrex that i just bought. I decided to wait so now it is 2:15am wed morning 15hrs since the last imitrex k10 hits while sleep !!! BOY the 02 was not working fast enough. So i took the ZOMIG WOW I did not get hit again until 2:20am thurs morning 24HOURS LATER 24HOURS LATER . TOOK A OTHER ZOMIG AN IT IS NOW 9:00 PM THURS NIGHT NO HITS YET .PEOPLE THAT ZOMIG FOR ME IS SOME AMAZING SHIT . THANK GOD . AND THANK YOU ALL FOR YOUR PRAYERS AND THOUGHTS I HOPE MY CYCLE IS BREAKING UP . I WILL LET YOU NO WHAT HAPPENS TONIGHT AT 2:30AM I HOPE NOTHING I HOPE GOD WILL BLESS EACH AND EVERY ONE OF US PLEASE KEEP PRAYING AND I WILL DO THE SAME LOVE YALL TOM
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pinksharkmark
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Re: MEDS ARE BREAKING ME
« Reply #20 on: Feb 23rd, 2005, 9:15am » |
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Your experience with Zomig isn't unusual. Back in the days when I was still using triptans to treat my CH I found Zomig pills were superior to Imitrex pills in that they acted faster, lasted longer, and were less expensive (though not by a lot).
I can also sympathize with the expense. I quite literally bankrupted myself (no drug insurance) paying full pop for Imitrex and Zomig over the years. Tough to start over building a retirement nest egg from scratch at my age, but I'm finally making some progress on that front.
I've been pain free for almost three years now on my current treatment regimen, on which I've invested maybe a hundred dollars, but if the mushrooms ever stop working for me I'll reach for Zomig before Imitrex. Strangely enough, Maxalt (another second-generation triptan) doesn't do a thing in my case. I have no explanation why one would work better than Imitrex and one not at all. Just one of those things, I guess.
pinky
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thomas
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Re: MEDS ARE BREAKING ME
« Reply #21 on: Feb 23rd, 2005, 9:27am » |
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Have you read the "No longer chronic thread" on this board?
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Cooked Brain
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Re: MEDS ARE BREAKING ME
« Reply #23 on: Feb 24th, 2005, 12:05pm » |
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Hi Tom!
I would say: try to up the verapamil and down the prednisone.
If it's all no use, try some ergotamine (deseril, cafergot), quite heavy but worked like a charm for me!
Hang in there bro!
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spicyblkgirl
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Re: MEDS ARE BREAKING ME
« Reply #24 on: Feb 24th, 2005, 3:24pm » |
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Hi I'm new to the message board but I can understand the meds breaking you. My headaches started about 5 weeks ago. My doctor gave me a new drug "Relpax" well it does stop the pain at a cost of $193.00 for nine (9) pill. Unfortunately, I can only take 2 in a 24 hour period but I have 4 - 5 headaches a day. I went on the prednisone at 40 Mg per day for 4 day then 30 on down to 5. Now I am off. The headaches are back not as bad but back. I've had 2 today.
Has anyone else tried this new drug?
on Feb 1st, 2005, 12:39pm, karma wrote:Tom,
First of all be careful mixing the trex and the Zomig. You need at least 24 hours inbetween the different meds.
I can't see any benefit in continuing to take the pred. at that dose.
It may be hard to do but If I was in your shoes I'd quit taking all the meds. and concentrate on the 02 and drink lots and lots of water. It sounds like it can't get much worse and the meds aren't doing it for you.
discuss it with your doc first.
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