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Topic: College Cluster Update (Read 1082 times) |
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coreyo87
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College Cluster Update
« on: Apr 14th, 2008, 10:38am » |
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Hey Everyone, 
So I just got back from the campus doctor, who I managed to get to write me a perscription for 10-15 liters/minute of oxygen. I'm going to have to call my insurance company though to see if they cover it (has anyone had any problems with this?) then I have to get in touch with a surgical supply store.
I also managed to get a perscription for imitrex injections which I am hoping are going to be pretty effective in aborting attacks from.. what I've heard I have high expectations. 
I'm feeling more optimistic today.. I just keep telling myself I can get through this, and hoping that it's just episodic and not chronic.. Whatever it is though I appreciate so much the help that the people here have offered to me, thank you so much guys 
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Guiseppi
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Re: College Cluster Update
« Reply #1 on: Apr 14th, 2008, 10:45am » |
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That is great news!!!! If your insurance won't cover it, it's still really cheap. I was paying $4.40 a month for each E-Tank I rented, and about $12 each time I filled them. But most insurances are covering it now, hope they do!
Read the imitrex tip on the left. The stat doses are usually 6mg, that's what you get if you just pull the trigger. Many find they can abort a hit with only 2 mg. If you can handle doing it, you can stretch a single dose out to 3 attacks.
Did the doctor talk about any preventative medications with you? That's a medication you take whiole you are on cycle, geting headaches, that'll reduce the number of attacks or at least their intensity. Lithium, topomax, and verapamil are some common ones.
Keeping you in our thoughts and prayers.
Guiseppi
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George_J
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Re: College Cluster Update
« Reply #2 on: Apr 14th, 2008, 10:54am » |
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Sounds as if you're on the right track. I love it when a plan comes together.
Don't worry overmuch about being chronic--purely as a matter of chance, the odds are around 90% that you will turn out to be episodic. Even if you do draw the short straw, there are plenty of people here who know that it is possible to live with that--and live well.
As others here have told you, the best weapon you have is knowledge. You're doing the right things.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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coreyo87
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Re: College Cluster Update
« Reply #3 on: Apr 14th, 2008, 11:03am » |
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on Apr 14th, 2008, 10:45am, Guiseppi wrote:
Did the doctor talk about any preventative medications with you? That's a medication you take whiole you are on cycle, geting headaches, that'll reduce the number of attacks or at least their intensity. Lithium, topomax, and verapamil are some common ones.
Keeping you in our thoughts and prayers.
Guiseppi |
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Hey there. Yeah, my doctor perscribed me a tapering off of prednisone about a week ago, Oh.. and I just called a medical supply company near home (where I'm going this weekend) and they are verifying as I type whether my insurance will cover a tank. (crossing my fingers!! )
again.. feeling optimistic today, lets put this beast to rest.
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Guiseppi
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Re: College Cluster Update
« Reply #4 on: Apr 14th, 2008, 11:49am » |
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Okay the prednisone is more of what we call a "transitional" drug. Something you take while you're starting your prevent. Most prevents take up to 14 days to really become effective in your system. Prednisone, as low as 30 mg a day, provides 100% relief for me. The downside it it's a very powerful medication and should not be taken for extended periods of time.
Keeping my fingers crossed insurance handles the 02!!!
Guiseppi
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RichardN
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Re: College Cluster Update
« Reply #5 on: Apr 14th, 2008, 11:57am » |
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Hi Corey & Welcome
First off . . . sounds like you've gotten real lucky with a doc who is willing to work with you and either knows something about CH or is willing to learn. Just to get 02 is a real hassle for many clusterheads. I'ts my only abortive and I go nowhere without it.
You're going to need more than one tank (I suggest 4 to start . . . so you can gauge your consumption). I keep 12 "E" tanks and one "B" tank (small tank that will fit in backpack or under the car seat). However, pricing structure might decide that for you (if insurance won't pay). My supply company doesn't charge me any rent per tank and I pay a flat rate of $10 per refill (exchange) . . . will be taking in 7 empties today.
You need multiple tanks because an "E" tank holds 680 liters of 02. At 15 lpm (make sure you get the non-rebreather masK) . . . that's 45 min of 02 . . . which will take care of 6-10 small hits (if used at first sign of attack) or 2 major hits. I never go into a weekend without at least two full cylinders, plus whatever's in the cart and my van.
VERY glad you found us. I can't use Imitrex, but those who can try and abort most attacks with the 02 and save the (limited dosages and expensive) Imitrex for the attacks the 02 doesn't reach . . . . it does take some practice.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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coreyo87
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Re: College Cluster Update
« Reply #6 on: Apr 14th, 2008, 3:39pm » |
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Okay guys,
So here's an update. I have the perscription for the 10-15 liter/minute oxygen tank. I'm thinking maybe I should've asked for more from my Doctor.
Anyway.. On to the stressful part 
I called the medical supply place.. upside- they have what i need, downside- my insurance doesn't cover it. I might be naive but the price of oxygen doesn't sound TOO bad compared to some of the posts i've read. I would be charged a one time fee of 125.00 for the high flow regulator then it's 15 dollars for each tank for the refills on the E Tanks (which I just read the last reply on this thread about.. THANK YOU!). Sorry if this is too vague, it sure sounds like it. But does this sound reasonable?
I'm going for an MRI on Wednesday night and will be back home on Thursday and hopefully will get to see a specialist (though i doubt it) Anyway, just hoping this whole cycle will end soon since I'm ending week five.
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| « Last Edit: Apr 14th, 2008, 3:47pm by coreyo87 » |
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seasonalboomer
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Re: College Cluster Update
« Reply #7 on: Apr 14th, 2008, 4:02pm » |
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It's not outrageous or anything. The cost per headache "put down" may be low as $2-3 per headache. I'm able to knock down about 5-6 per E tank with mine.
Imitrex injects.... a lot more than that.
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Brew
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Re: College Cluster Update
« Reply #8 on: Apr 14th, 2008, 4:50pm » |
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Hopefully somebody will come along to this thread and provide more info, but I believe you should be able to negotiate a "cash" price for refills. Play it up that you're a poor college student.
And you can get a regulator on e-bay for much less than $125. I'm thinking $25-30.
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CostaRicaKris
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Re: College Cluster Update
« Reply #11 on: Apr 14th, 2008, 9:19pm » |
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on Apr 14th, 2008, 4:02pm, seasonalboomer wrote:It's not outrageous or anything. The cost per headache "put down" may be low as $2-3 per headache. I'm able to knock down about 5-6 per E tank with mine.
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Really, I only get about 3 out of an E tank. What kind of mask are you using?
Corey,
We have lot's of good news here, but I'm going to repeat Guiseppi's question about a preventative. I'm a bit concerned because you're on Prednisone, but I don't see a preventative (Verapamil, Topomax, Lithium) for you to be building up on while that's tapering off and I don't want you to get hit hard when the pred is gone.
~Kris
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kevmd
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Re: College Cluster Update
« Reply #12 on: Apr 15th, 2008, 11:25pm » |
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You're doing great getting what you need with the o2 and the imitrex. I'm sure you are already sick of talk to the doctor. But.....I need to get on board with those mentioning preventatives. There is great succes rates with Lithium, verapamil and even topamax. I urge you to do so quickly. You may not need o2 or imitrex if a prevenative works for you.
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