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Topic: Cluster Rookie (Read 485 times) |
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DocB
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Cluster Rookie
« on: Jan 25th, 2008, 7:48pm » |
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Hello All:
I would like to introduce myself as a "Rookie" to the cluster community. I was diagnosed with cluster headaches 2 weeks ago by my Neurologist. I've been having the headaches 2 times a day since late December. My Family doc diagnosed migraines and subscribed Topamax and Midrin.
I've gotten migraines my whole life and new this was a different animal. That's when I went to see the Neuro. He ran the MRI tests just in case but all my symptoms appear to be cluster headaches according to what I've read and what he's told me. My headaches are always on the left side and the intense pain is immediate. I always get the stuffy nose and slightly watery eye. I can't lay down and just pace or rock my head. This is definitely the worst pain I've ever experienced.
My Neuro has tried several meds (Preventative: Prednisone, Verapamil neither of which have made a difference). Just today he told me to stop taking the Prednisone because if it would have helped, "It would have been an immediate result". He also just prescribed a new daily drug called Depakote which I haven't researched yet. Anyway, as for acute treatment the only thing that has worked has been Imitrex. It usually kills the beast in about 15 minutes if I'm lucky.
What I'd like to ask all the veterans is this.. My insurance is only going to cover 9 Imitrex a month. Pretty pathetic considering I'm using 1 or 2 a day.. I don't know how I'll be able to afford paying for these once they run out. Does anyone know of another prescription similair to Imitrex that insurance is more willing to pay for that's similar in formula. My doc mentione a possibility of "Relapax" I think.
Thanks for letting me be part of this community. Venting is a relief in itself.
Doc B (doctor by nickname only.....thank god)
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chewy
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One thing you can do, and the Doc should know this, is have him contact the insurance company and state a medical neccesity for more imitrex,
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Linda_Howell
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Re: Cluster Rookie
« Reply #2 on: Jan 25th, 2008, 8:39pm » |
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And then ask him to give you a script for Oxygen.
Almost everything you need to know is right here:
http://www.ouch-us.org/medications/oxygen/o2info.shtml
Linda
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GrandPotentate
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Re: Cluster Rookie
« Reply #3 on: Jan 25th, 2008, 10:30pm » |
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I went through a bunch of the drugs you mentioned. I think they are effective for migraines (which I don't have), but hey didn't do squat for my CH. I didn't know at the time that I had CH. They did get me nice and dopey, however, to the point wher I forgot to buy cigarettes and didn't evn notice for a month. Never started again.
My GP at the time did a little research, said it sounded like CH, and we tried oxygen. It worked great for me as an abortive. Read up and discuss with your doctor. My insurance pays for O2.
Jon
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Jon
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RichardN
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Re: Cluster Rookie
« Reply #4 on: Jan 26th, 2008, 1:02pm » |
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Hi and Welcome
OXYGEN! Works for 70% of us to abort, and even if insurance won't pay for it, it's cheap, effective and no side effects. I can't use triptans (Imitrex) due to some artery blockage and high cholesterol, so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack . . . . with CH . . . MINUTES MATTER!
Many here who can use Imitrex use 02 first to abort most attacks and save their Imitrex for the hits the 02 doesn't reach. Make sure you read the "imitrex tip" . . . link on left which may help you stretch out your script.
Don't discount water therapy (see "water X 3" . . . link on left). Am convinced this has helped me reduce the frequency/intensity of attacks. Not easy to do, but you can't beat the price.
Be Safe, PFDANs
Richard
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thebbz
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Re: Cluster Rookie
« Reply #5 on: Jan 26th, 2008, 2:21pm » |
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Welcome Rookie,
Your doc is a dumbass. Prednisone will have it's full effect in 48 to 72 hours not immediately. It works well in stopping the constant attacks but has a failure rate when discontinued. It also has many many side effects.
Get the 02 if you can. Check out the imitrex tip on the left, it will help stretch out the injections till you get more.
all the best
thebb
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DocB
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Re: Cluster Rookie
« Reply #6 on: Jan 26th, 2008, 8:25pm » |
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Thanks for all the advice veterans! My doctor said they were going to get the pricing for Oxygen for me next week. The drug that he gave me similair to Imitrex is Relpax. I've got 3 samples and took one during an onset today. It seemed to work but can tell it's going to be a fun night.
Has anyone heard of CH coinciding with the winter solstice? I read that somewhere and was just wondering if any of you had heard that.
Thanks again,
DocB
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imfareware
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Re: Cluster Rookie
« Reply #7 on: Jan 26th, 2008, 9:00pm » |
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Hello, I'm a noob to the forum but not to the pain. O2 helped. I''ve been having them since 86, and this site helped me take some paperwork to my Doctors and get my O2, it helped me.
If your a rookie to the cluster headaches, try ice on the head, doesnt releive the pain but it takes your mind off them (works a bit for me). Hang in there!
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thebbz
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Re: Cluster Rookie
« Reply #8 on: Jan 30th, 2008, 2:25pm » |
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Winter and Summer solstice are bad times for me. for others as well.
thebb
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BarbaraD
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Re: Cluster Rookie
« Reply #9 on: Feb 3rd, 2008, 7:51am » |
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Welcome Doc B
RED BULL (energy drinks) or coffee at the first sign help a lot of us (nothing helps ALL) and then hit the O2.
Cafergot works for me (can't take Imitrex) and it's a lot less expensive and I've never had a problem getting all I needed. It's an older drug (vaso-constrictor), but has less side effects than trex and seems to last longer. It comes in pill form (takes a little longer to work) or supposotories (if you go that route MAKE SURE it's the Cafergot PB or you'll throw up your guts! - trust me on that one - but these work as fast as the trex injections).
Melatonin at night (9-15mg) a few minutes before bedtime helps get you thru the REM sleep and usually helps prevent the night-time hits. Works for a lot of us most of the time.
Ice packs (or frozen peas) on the neck or head (or heat - your choice - we're all different) help some during a hit.
But remember - NOTHING works for ALL of us and you'll have to experiment as to what works for you. It's a crap shoot at best, but eventually you'll find what works for YOU. Just keep experimenting till you do and don't give up if something doesn't work "immediately". Some things take a little while to start working. And what doesn't work this cycle just might work the next one.
But you are in the right place here. We DO understand what you're going thru cause we're all going thru the same thing. When we say we understand, you can bet your bippy WE DO! So pull up a chair and sit a spell. We're here to help in any way we can....
Hugs BD
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cash5542
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Re: Cluster Rookie
« Reply #10 on: Feb 3rd, 2008, 1:50pm » |
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Hi and welcome. I am a supporter of a 22 yr old daughter. Her cluster headaches started about 18 months ago after many years of migraines. My family history is pretty full of migraines so I also knew this was different. Relpax is another triptan like imitrex. It has been a godsend for my migraines. My daughter started using it fairly successfully for CH as well. Oxygen is her main abortive but not always handy to have. She has a can of redbull and a relpax tablet taped on the bottom in her purse, backpack and swimlocker. I'm not sure if it's the combination or what but it works. There are two problems though. You need 48 hours between any triptan like imitrex or relpax and relpax is as limiting with the amount the insurance will give you. I was able to get 18 tablets with several whinings to my doctor. It is a tablet and is supposed to be not as effective as injections but it's fast acting and really has been good. As many have said, what works for one doesnt work for others. Zomig or migranol nasal sparay is another possibility. Good luck.
Charlotte
I forgot to add she's on 200 Topomax and 320 verapamil. Depekote works wonderful but side effects were awful. She only uses it when headaches are unmanagable
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| « Last Edit: Feb 3rd, 2008, 1:55pm by cash5542 » |
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kingsiren
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Re: Cluster Rookie
« Reply #11 on: Feb 3rd, 2008, 2:45pm » |
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Please let us know how things turn out with the 02, there are plenty of us on here who obtain our own oxygen due to insurance issues & sometimes because of ignorant doctors. As a few people mentioned, it helps upwards of 70% of us, the first time I used it 2 abort an attack I cried beause I was so relieved to finally have a viable tool to treat the monster. Anyway, if you need any advice on how to set up your own oxygen there are plenty of posts under the treatment section or pm me directly Ill fill you in.
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I have an ice pick being repeatedly stabbed through my eye, into my brain while 4160 Volts run through it as someone squeezes my eyeball. You get headaches buddy, I get the Beelzebub on Crystal Meth.
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maryo
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Re: Cluster Rookie
« Reply #12 on: Feb 4th, 2008, 8:38pm » |
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Insurance companies! Does your insurance company cover ER visits? Just thinking out loud hypothetically, if you used up all your Imitrex (in, what, 5 days?) and sought treatment at the ER for the rest of the month, would the insurance company re-think their policy? I know if I run up ER bills (for any reason), the insurance company sends me a letter offering to assign me a nurse to help me manage my health. I'm in health care and I work in an ER so it always amuses me when I get those letters.
Anyhow, there are lots of other options other than triptans. I second the cafergot idea. It's cheap. It's enterically coated because the medicine is hard on your gut, but even so, I grind it up and mix it with juice and down it like a shot of booze (I stay clear of booze) so I can get quicker effect. Never tried the rectal route but it's a good idea.
Unfortunately, the failed experimentation is painful but there's no motivation like pain.
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