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Topic: New in Chicago (Read 408 times) |
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Asil
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New in Chicago
« on: Feb 17th, 2005, 10:23am » |
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Hi,
I found this site and it's helpful to see all this info and know there are others out there who are unfortunately suffering, too. My husband has clusters and is currently in a long cycle. He's 28 and he first started having them as a teenager.
By doing some research last year I was able to help him identify what the problem was and learn the lingo so we could communicate with doctors. No one helped him. They just threw some Imitrex at him and told him it would help.
Last year the cycle was about 3 weeks and it was difficult to get through but not all that memorable I guess. He was prescribed Maxalt and that got him through the worst days. The previous years the headaches only lasted 2 weeks and he got by by taking a lot of Tylenol.
I think this is the longest cycle he's had so far. It started mid January and is going strong, if not getting worse. He gets them in the early morning and then at least one more by 2pm. He takes Maxalt. He was on a low dosage of verapamil for a few weeks and it didn't help. Then they doubled the dose and it still didn't help. He's been switched to Topomax for the last 2 days and we're not sure if that has kicked in yet.
We are two working professionals and have a toddler who is a very good, sweet kid. On top of this, I am in grad school and my husband taking some classes on the side. So, I guess things are pretty stressful, but we have a very strong family life and are very supportive of each other.
That's my story. I guess it's nothing new to you guys. Next week we're going to the Diamond Headache Clinic in Chicago. I hope they can help.
Is there anything at all that I can do for him besides just stay away when he has an attack? I am helping him learn some breathing methods and yoga, too.
Thanks.
Lisa
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vig
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Re: New in Chicago
« Reply #1 on: Feb 17th, 2005, 10:36am » |
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You can make sure there are ice packs or Imitrex or whatever within easy reach and you can help make sure other people stay away. That kind of thing.
Oh and, IN MY OPINION, you can throw out the Topamax unless you want a complete retard in the house.
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| « Last Edit: Feb 17th, 2005, 10:38am by vig » |
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never, Never, NEVER quit. -Winston Churchill
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miapet
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what doesn't kill me makes me stronger
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Re: New in Chicago
« Reply #2 on: Feb 17th, 2005, 10:50am » |
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Welcome .. .sorry you're here .. .but glad you found the place and are researching.
I would encourage you to ask for oxygen with a high flow regulator and non-rebreather mask (if you have to use a regular mask, it can work . .just don't accept cannulas). It's the most non-invasive way to treat CH and helps quite a few people.
I would also agree with Vig on the Topamax .. .better known as 'dopeymax' . . .little (if any?) success . . .but a great way to turn someone into a tard (while on it).
check your instant messages *g*.
*positive light and energy*
miapet
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Clusterbusters Rock
www.clusterbusters.com
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E-Double
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Re: New in Chicago
« Reply #3 on: Feb 17th, 2005, 11:53am » |
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Topamax was torturous for me.......
A couple weeks on that and it brought me from an articulate teacher to >>absent minded>>> to completely lost in not just my profession but Life!!!
I got off of it as quick as I was allowed to (have to taper off) and then it took a couple of weeks to regain clarity........
Those who say that it is helpful with there HA also seem to mention being stupified or depressed.......
I personally would rather have pain over having mental mush!!
Considering the fact that he is taking classes I would totally lean towards something else!
Also ask doc for O2!!!
Talk to your hubby when he has PF moments and ask him how he would like you to help....You'll learn to read the signs....Sometimes I like my wife near and other times far away....She has learned to discriminate between the two.
Wishing you and your hubby luck!!
E
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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Asil
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Re: New in Chicago
« Reply #4 on: Feb 17th, 2005, 12:01pm » |
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Thanks so very much for the info! He's been in bed all morning. I'll let him know about the Topomax!
Lisa
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sandie99
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Re: New in Chicago
« Reply #5 on: Feb 17th, 2005, 12:24pm » |
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Lisa,
so sorry that your husband has to have CH... 
I am glad that you found this site. Here you both will find support. I am happy to hear that you are there for each other... 
Maxalt helps me through the hardest times, too! It's the only painkiller which helps me out. Topamax didn't help me, but I hope it helps your husband.
I hope he's PF soon!!!
Best wishes,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Bob_Johnson
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Re: New in Chicago
« Reply #6 on: Feb 17th, 2005, 1:05pm » |
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Self-education is very important, especially when dealing with docs who have little experience with cluster. I strongly suggest two sources:
http://www.headachedrugs.com/pdf/HA2005.pdf (Have your printer on for this long.)
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My first choice is the second title.
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
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...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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The Diamond group was founded by one of the old timers in treating headache so they have decades of experience.
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Bob Johnson
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Asil
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Re: New in Chicago
« Reply #7 on: Feb 17th, 2005, 2:32pm » |
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Thanks again everyone. I really appreciate it!
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