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Topic: new to the group, not new to ch-es (Read 566 times) |
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phil098342wq
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new to the group, not new to ch-es
« on: Feb 13th, 2006, 2:53pm » |
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My nick name is DJ and two years ago I was diagnosed with Cluster and Migraine Headaches. The pain was so intense in the eye that my doctor thought it was an eye problem and sent me straight to the ER, thankfully. When they numbed the eye, oh my gosh! The pain was so intense. Over the last couple of months, after a short break, they have returned-worse. I am on Valporic Acid-1500 mg a day, and imitrex oral and phenergan 25 mg oral for the attacks. Saturday night I had the worse one yet and it scares me. When the examine my eyes two years ago everything was great, yesterday they said I have 20/40 in the left and 20/30 in the right and the eye doctor is suggestion some pretty ugly glasses. I know fluorescent lights and computer trigger them, however I am an architect student and around them for any where from 8 to 14 hours a day. I don’t want to change my life, but I don’t want another attack like Saturday, on a scale 1-10 it was a 15. I am trying to research this as best as I can and would like an information any one can pass on, thank you
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seasonalboomer
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Re: new to the group, not new to ch-es
« Reply #1 on: Feb 13th, 2006, 3:39pm » |
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on Feb 13th, 2006, 2:53pm, phil098342wq wrote:| My nick name is DJ and two years ago I was diagnosed with Cluster and Migraine Headaches. The pain was so intense in the eye that my doctor thought it was an eye problem and sent me straight to the ER, thankfully. When they numbed the eye, oh my gosh! The pain was so intense. Over the last couple of months, after a short break, they have returned-worse. I am on Valporic Acid-1500 mg a day, and imitrex oral and phenergan 25 mg oral for the attacks. Saturday night I had the worse one yet and it scares me. When the examine my eyes two years ago everything was great, yesterday they said I have 20/40 in the left and 20/30 in the right and the eye doctor is suggestion some pretty ugly glasses. I know fluorescent lights and computer trigger them, however I am an architect student and around them for any where from 8 to 14 hours a day. I don’t want to change my life, but I don’t want another attack like Saturday, on a scale 1-10 it was a 15. I am trying to research this as best as I can and would like an information any one can pass on, thank you |
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Hey DJ,
Welcome to the home of the cluster hit parade! Sorry you have reason to join us but welcome to our little corner of the web. First, and foremost, there is a lot of information here on the site that can help you. And, there are treatments and therapies that can possibly allow you to have a life where Cluster Headache is kept largely at bay.
There are plenty of folks here with a greater level of expertise with meds than I but one thing that stands out is the oral imitrex. You'll probably see the universal response to that presecription is a thumbs down. It's too slow. If Imitrex is the direction you're comfortable going then you'll find the most effective delivery method is injectable, followed by nasal imitrex. Many have found Imitrex to be an effective abortive.
A great weapon (and for many of us the best weapon) is O2 therapy. You'll see a link to the left that shows an optimal O2 arrangement. If you can't get your doctor to prescribe O2 then beat him soundly around the head (kidding, really). So much of the research all seems to be coming into agreeance that O2 is a first line defense/abortive. And, since its just O2 you don't have the same "drug" issues you might have with other treatments.
Lastly, take your time to learn about the many options that folks are using for preventative treatments. This is the slipp-iest area as many have had effective results, only to find that one treatment stops working at some point later. But, relent on and find something that does work.
You don't have to just take the pain. Spend the time and research, research, research and prepare yourself to be your own advoacte with your doctor. Be so prepared that you know what he may or may not recommend before you go in. And what that will mean.
Good luck and read on.
Scott
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| « Last Edit: Feb 13th, 2006, 3:41pm by seasonalboomer » |
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Dragnlance
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Re: new to the group, not new to ch-es
« Reply #2 on: Feb 13th, 2006, 4:12pm » |
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Welcome, and sorry you had to come here.
CH sucks bigones and there is no way around it. Whether you want to or not, your life has changed. If you try to keep it status-quo, you will suffer. If you make changes, you can often times alter the course of a CH hit, by aborting it, sometimes before the monster claws your brains to bits.
Scott is correct. There is tons of info here and much may help you.
Welcome home DJ
Dragnlance
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Richr8
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Welcome DJ
« Reply #3 on: Feb 13th, 2006, 5:23pm » |
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on Feb 13th, 2006, 2:53pm, phil098342wq wrote:| I am trying to research this as best as I can and would like an information any one can pass on, thank you |
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DJ-Sorry you had to find us but glad that you did.
All of the information you are looking for is here on this site. As Scott suggested, follow the links on the right and read, read, read. Oh, and one more plug for Oxygen. If you don't have it, get it. In addition to the links, much information is shared on the message boards on every topic realted to CH including alternative approaches. If you can't find what you are looking for, asking specific questions on the message board will yield a number of experience based responses and a lot of support fom folks who really understand what you are going through. Best yet, the lights are always on.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Guiseppi
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Re: new to the group, not new to ch-es
« Reply #4 on: Feb 13th, 2006, 6:37pm » |
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DJ, your initials are somewhat famous on this board already! For reasons you'll come to know and love. Welcome to the funhouse, as you've already read, different stuff works for different people. For me, I use lithium, 1200 mg a day, when I am on cycle as my preventative. When a headache breaks thru the lithium I use oxygen, (you'll hear that a lot on this board) and oral cafergot to tame it back down. I have been given imitrex injectables but the lithium has been working so well I haven't tried them out yet. Heard a lot of good things about them though.
Just one more thing, if you do go with the oxygen please read the link to your left. Used incorrectly it can be worthless. used correctly it stops it on a dime for me almost every time. Good luck, hoping and praying you find something that helps you.
Guiseppi
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Bob_Johnson
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Re: new to the group, not new to ch-es
« Reply #5 on: Feb 13th, 2006, 9:25pm » |
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Strongly recommend this book for a complex headache pattern that you have.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
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This is an excellent summary of current treatments but not a substitute for the book.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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BarbaraD
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Re: new to the group, not new to ch-es
« Reply #6 on: Feb 13th, 2006, 9:35pm » |
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DJ
Be careful with the Valporic Acid -- be sure to have your level checked periodically (don't get in the toxic range - it can be dangerous). Some docs forget to tell you about that.
Read everything you can here and go back to the doc with information on treatments. Oral Imitrex (as has been said) is slow slow slow. Injectible works for many here.
I use the ergotomines (Cafergot, DHE, and Cafergot PB suppositories -they work about as fast as the imitrex injections or faster).
O2 works great for so many people. And black coffee will sometimes abort an attack in the making for me (I'm chronic and hate to take meds).
sorry you have to be here, but it's the best place in the world to be for CH. There's someone here 24/7 to help, listen, or just be here for you when you need a shoulder.
Hugs BD
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Karla
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Re: new to the group, not new to ch-es
« Reply #7 on: Feb 13th, 2006, 9:44pm » |
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I hate needles. I find the imitrex nasal spray to be as fast as the injection. aprox 10 min where oral is like 1 hr. Check into the oxygen link on the left <== Oxygen is a lifesavor for many. It aborts the ha in about 15-20 min. Since the insurance company likes to limit how much imitrex we can use o2 is the route to go. Depakote? I can't think of any that have found that to be sucessfull as a preventative. I would recomend verapamil(calan) up to 960mg and/or lithium 900mg. Then predesone, topamax, elavil, and there are a few others. Take melatonin at night right before bed and it can help you sleep through the night if your attacks are at night. My vision is greatly effected while getting hit but is perfect when not getting hit. I also thought mine was an eye problem and started there. My eye dr tested me like 3x once each week. It was greatly different every time I went in and it was not correctable either. Since it is fine when I am not hit we opted for no glasses. I hope you find this site helpful and welcome to your new home.
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Karla
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Guiseppi
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Re: new to the group, not new to ch-es
« Reply #8 on: Feb 13th, 2006, 11:15pm » |
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Forgot to mention, they misdiagnosed mine when I was in high school and gave me glasses. There was nothing wrong with my eye sight! Didn't need glasses till I was in my 40's.
Guiseppi
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Jasmyn
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Re: new to the group, not new to ch-es
« Reply #9 on: Feb 14th, 2006, 2:52am » |
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Welcome DJ!
You've received a lot of good advise already so all I'll say is welcome, read and stick around. This is a good place to be, we all row the same boat and the lights are always on when you need to talk.
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Jazz
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Beastfodder
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Re: new to the group, not new to ch-es
« Reply #10 on: Feb 14th, 2006, 6:47am » |
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You know in some ways CH needs to be an ongoing condition , just to give you the time to read up and work through the treatment options.
For my part, with episodic CH that's paid off in that using O2 (with a hi-flow/non-rebreather type mask like clustremasx) and the www.clusterbusters.com methods have worked far better than meds like pizotifen and some of the triptans I was precribed in the past.
So the good news is you will get relief from working through all the advice given here. Even better is that you're now hooked into a network of people who can help you get through the worst of it.
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O2 and clusterbusters - naturally
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