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maggie_may
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Reintroduction
« on: Mar 7th, 2003, 1:41pm » |
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I first came to the board back in November seeking some information about my newly diagnosed CH, but unfortunately found myself sidetracked and unable to post – but I kept reading every chance that I got. Now, I can’t seem to find any of my old posts (there were only 4). Oh well. This time, I plan to stick around more. You guys all seem like a great bunch of caring people 
So, a few things about myself. My name’s Maggie, I’m from North New Jersey and I’m 25. I can remember having serious head pain as far back as 14 – when I missed 2 weeks of school because my head hurt so bad, I couldn’t make myself do anything except focus on the pain. Then they went away for a while. I did have a year or two of headaches when I was in high school, but again, they went away. Then again, when I was 19 and starting my sophomore year in college. Ever since then, I’ve been to my PCP twice a year complaining of intense stabbing/pulling pain around my right eye that comes and goes up to 5 times a day – mostly in the late evening and early morning. Over the years, he’s told me that they were migraines, severe sinus headaches, and then finally tension-stress headaches. By this time – last November, my Mom and boyfriend had gotten very concerned about what was going on and told me to go and finally see a neurologist. After describing everything to him (severity, length, times of year it happens, etc), he concluded that it was CH and sent me for an MRI – which was clear. In a way I was relieved – to finally know what was really wrong with me – but disheartened to know it because of the prior research I did on this site and even webmd (with the limited information they have).
Before my CH diagnosis, I was on tons of different meds, all of which did absolutely nothing for me. In the very beginning, I was taking Advils/Tylenol reaching up to 4-5 pills every 4 hours. Then, I was moved over to Percocets and all they ever did was make me very sick and extremely high – they got tossed the next morning. The last group of meds the PCP had me on was either Butalbital w/caffeine or 800mg of Ibuprofen with 800 mg of Skelaxin 4 times a day. I don’t think that combination actually helped – it only made me so relaxed and slightly high, that I didn’t know what was going on around me!
Currently, my neurologist has me on Imitrex Nasal and 180mg of Verapamil. I know the Verap level is on the low side. Last I saw him – back in January, we decided that it shouldn’t be boosted again. But between then and now, I’ve been getting hit more frequently than I did during the first few months that I started the CH treatment. I probably need a stronger dose of the Verap. Also, I’ve noted that the Imitrex NS is taking much more than the typical 15 minutes to kick in, usually. The time frame I use in my journal is closer to the 30-minute mark. So, when I see him again on the 25th, I’m going to talk to him about upping my Verap, switching over to the Imitex Injectables (I keep saying to myself “I CAN stab myself with a needle!”) and even about the oxygen therapy.
So, that’s all about me for now. Sorry to be so long-winded.
pfdan’s
maggie
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Strength does not come from physical capacity. It comes from an indomitable will. - Mahatma Gandhi
The human spirit is stronger than anything that happens to it. - C.C. Scott
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JDH
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Re: Reintroduction
« Reply #1 on: Mar 7th, 2003, 2:13pm » |
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Hi Maggie and welcome.
Sorry you had to come looking for us but it's a great place to be if you're getting CH's.
Definitely ask your Dr about oxygen therapy, it helps many of us here. Also see if he'll up that Verapamil dosage, that can make a difference.
Ask him if you can try Imitrex injectables, they're much faster acting than the nasal form. It's no big deal sticking that auto injector in your thigh...just look the other way and push that button...relief will soon follow.
good luck and pfdan's to you,
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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cbolony
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Re: Reintroduction
« Reply #2 on: Mar 7th, 2003, 2:37pm » |
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maggie i can tell you if you get 2-4 ch aday you better
use the imitrex tip on the left side of the board because
the insurance companys are not going to give you enough stat doses.I get 3-4 a day in cycle for the first
4 weeks.I cut mine in 1/3 just to make sure i have enough.When you go to the doctors office ask him if he has imitrex injections samples he can give you there free
and you will need them.
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Lori
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Re: Reintroduction
« Reply #3 on: Mar 7th, 2003, 2:56pm » |
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Hi Maggie,
Sorry to hear you have CH..sorry you are in cycle too.
It might not hurt for you to call the docs office and ask him if he can increase the verapamil dose now so you don't have to wait until the end of the month for your appt. No need suffering. You may want to try to get in sooner even, especially since you are getting hit more now and are not getting the relief you should be getting. Yes, ins. companies limit amounts of triptans so ask for samples and ask doc to write letter of necessity ( I believe it is) to ins. co. stating the need for more than the current allowed monthly amt. Please do read all you can here about the different meds and 02 treatment so you are armed with info. Go to the search button at the top of the page and look up things that way too.
I wish you luck. Do get the help you deserve. I swore I would never let them let me suffer again after finding out there was treatment for CH. (I only found this out since finding this website) So get the help you deserve.
Keep us updated on how you are. How long does your cycle usually run? How far into are you now?
PFDAN to U
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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2late
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Re: Reintroduction
« Reply #4 on: Mar 8th, 2003, 9:07am » |
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welcome aboard maggie! if you haven't, try oxygen, it works wonders for alot of us and it's pretty benign stuff. if ya need more info on it just ask. .........Jack
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suzy617
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Re: Reintroduction
« Reply #5 on: Mar 8th, 2003, 10:03am » |
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Hi Maggie, Nice to meet ya.
suzy
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When God measures men, He puts the tape around the heart, not the head.
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maggie_may
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Re: Reintroduction
« Reply #6 on: Mar 9th, 2003, 6:02pm » |
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Thanks everyone for your helpful comments. They really do mean a lot to me. I’m grateful right now because they seem to have subsided again. This time I hope they are gone until I go back to the neuro – it would be hell, I suppose, to get hit while on vacation.
Lori – Thanks for the advice. I did call the office, but he is out of town this week. I can wait the few extra days since I’ve stocked up on the Imitrex NS – should have enough to last me till the 25th. He did mention the letter to the ins company if I did ever need it – which is good, because I’m glad that he’s actually on my side.
Things I probably forgot to mention the first time around – My cycle – in the past – typically ran from November to March, and sometimes for a few weeks during the summer. This time around, they started in early October and lasted until December. After December, its been a few weeks here and a few weeks there that I’ve seen it resurface. I’ve gotten a few shadows here and there, but nothing to REALLY complain about. My last go at it was just a few days ago, but I think that they’ve gone away for another few weeks. As much as I hate them – I’m hoping I get one when I see the neuro – then he can help me more accurately.
Here’s to hoping the dr is really up to the O2 treatments.
pfdans
maggie
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Strength does not come from physical capacity. It comes from an indomitable will. - Mahatma Gandhi
The human spirit is stronger than anything that happens to it. - C.C. Scott
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2late
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Re: Reintroduction
« Reply #7 on: Mar 9th, 2003, 6:10pm » |
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you need to call the shots here Maggie! tell yer doc about this board & all the people 02 has helped, don't take no for an answer! good luck & let us know. .........Jack
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Frank
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on Mar 8th, 2003, 9:07am, 2late wrote:| welcome aboard maggie! if you haven't, try oxygen, it works wonders for alot of us and it's pretty benign stuff. if ya need more info on it just ask. .........Jack |
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Shit! I went through a whole E tank since last night. Good thing my insurance is paying for it.
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Woobie
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Re: Reintroduction
« Reply #9 on: Mar 9th, 2003, 8:34pm » |
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Hello Maggie.. and welcome..
O2 gooooood!
Nice to meet you!!
tina 
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