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stpp77
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hi, first time here
« on: Aug 26th, 2006, 1:48pm » |
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Hi. This is my first time on this site and found it by researching cluster headaches, which I know very little about, except what I am going through and the research that I have started doing...I was diagnosed just a few days ago and have been suffering in episodes for the last 5 years. According to the doctor who made the diagnosis, I have the following symptoms: severe onset during night/wake up hours; accelerated heartrate during attack; one sided pain, smaller eye pupil; tearing in eye and nasal stuffiness; and a cyclical pattern. I am very scared of what the diagnosis means and the future continuing pain this diagnosis implies. He started me on Imitrex and recommended treatment at a headache clinic, which I have scheduled an appt. Any advice would be great --I am a mom and am trying to keep up with the kids as this is happening!
Thanks.
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Bob_Johnson
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Re: hi, first time here
« Reply #1 on: Aug 26th, 2006, 2:44pm » |
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You'll find much support and information here. Let me suggest a couple of resources to get your learning curve moving.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. 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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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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thebbz
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Re: hi, first time here
« Reply #2 on: Aug 26th, 2006, 3:53pm » |
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Lots of moms here in the same situation. Dont be intimidated by the diagnosis. CH dont kill ya. I can tell you that there is alot of support here. Hang in there and ,what are you using now for meds, when are you getting hit, have you been in cycle long???? Lots of more information and you will find better options with your doc. Your next step will be the neurologist if you haven't been there already.
all the best
thebbz
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Callico
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Re: hi, first time here
« Reply #3 on: Aug 27th, 2006, 1:24am » |
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Welcome, but I wish you weren't here! 
Take the time to read as much info as you can here. Please research HA clinics well before spending a lot of money with them. Quite a few of us have tried that route with little if any success. They tend to specialize in migraine.
Keep watching for info about Davcon 07. It is a get together for a bunch of us in the upper midwest (and others) held in Davenport IA usually in Jan. It helps to get to meet another clusterhead in person. YOu don't feel so alone anymore.
BTW, I'm from Aurora, and was in Rockford today.
Jerry
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Paul98
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Welcome STPP!
Lots of info here. Read, ask questions and grab an oar and start rowing.
You said your Dr. perscribed imiterx. Good stuff but it is a bandaid for an attack. Look into getting something that will supress the H/A's until you are out of cycle. I use a perdnisone burst/taper with verapimil. The pred. kicks in within a day and as you taper off it the verap kicks in. The trex I use for the ones that get past the meds.
I don't mean to scare you but get used to cluster headaches as they will probably be with you for a good part of your life. It sucks but that is just the way it is. Keep a stash of meds on hand between cycles. Know when your cycle time of year is and be prepared.
-P.
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lionsound
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Re: hi, first time here
« Reply #5 on: Aug 27th, 2006, 9:36pm » |
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Hi!
I'm a mom of three.
It can seem nearly impossible sometimes to keep up with the kiddos and deal with your noggin at once. However it CAN be done. You can do it!
Some moms have a special toy basket for them when mom's head hurts, or a movie for them to watch, or a notebook to draw in or craft project.
A headache clinic is a wonderful idea! Also read about oxygen on this site it works very fast and leaves you thinking clearly.
please let us know how you are doing...
be well and PF!
-lionsound
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maureenv
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Re: hi, first time here
« Reply #6 on: Aug 28th, 2006, 1:37am » |
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Hellostpp77
I to am a mom, one of my fears when I had my childern was raising them while in cycle. Though sometimes it's hard I really rely on friends and family. When I first got a 02 tank I was worried my childern would be scared so we drew some funny pictures and decorated my tank. Now when I have a ha my daughter colors pictures to cheer me up when its over then we add it to the others. Her special way to help.
Like others have said read, read and read, and talk to your dr about 02 it really is the best for most chers.
Good luck and pf
Maureen
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Bert
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Re: hi, first time here
« Reply #7 on: Aug 28th, 2006, 5:54pm » |
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Sorry you found us but glad you did. Read, read and get informed. It is through this site that I learned about oxygen. I am a chronic and oxygen has been the greatest relief ever. Wish you all the best and let us know how you are doing.
Best regards from the Netherlands
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E-Double
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Re: hi, first time here
« Reply #8 on: Aug 28th, 2006, 6:30pm » |
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This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demandedfrom your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Best wishes, good luck & stay as positive as you can!!!!
Eric
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Guiseppi
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Re: hi, first time here
« Reply #9 on: Aug 28th, 2006, 6:58pm » |
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What everyone else said! My kids are grown now but please consider involving the kids in your care. When they can help by bringing you the ice packs or your oxygen tank, it makes them feel like they aren't so powerless against this thing that's kicking mommy's butt. That helped my kids deal with their initial fear of it. Can be a little hairy for the little ones to watch you dancing with the beast sometimes. And welcome to the board!
Guiseppi
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PollyPocket
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Re: hi, first time here
« Reply #10 on: Aug 28th, 2006, 8:08pm » |
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Hi stpp! Guiseppi is right. I'm the mom of 2 now teenagers and I was so afraid of their reactions to my cycles. I barely remember when they were very young, but as they got older, around 4 & 6, my kids would bring me a pillow when I was grinding my head into the floor or wall, my daughter would bring me her "dolly", a glass of water or tissues when it was over, and when I was super medicated, they were very understanding that mommy needed their help. I think it did help them to feel a little less powerless and that there were things they could do to help.
Talk to your kids about ch and let them know that they don't have to be afraid of it. Sorry that you're going thru hell, but really glad you're here so we can all help you thru it together.
Hugs,
Jen
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tanner
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Re: hi, first time here
« Reply #11 on: Aug 28th, 2006, 11:03pm » |
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Hate to meet you this way but glad you found us! I don't like to disagree with lionsound because things may have changed greatly since I was at the stage you are now, but I will have to agree with Jerry (Calico). Do very thorough research on headache clinics before committing time and money.
I am guessing that from your location you may want to look at "Diamond" in Chicago or Joel Sapers place in Mich. In 87 both were total migraine focused and would not admit that was the case. They treated clusterheads by trowing mass quantities of unusual combinations of drugs and hoping for a result they could write a paper on.
Of course I was doing both as an inpatient and I doubt they would be quite so experimental with an outpatient. I am sure I sound a bit bitter, but times were different then and I give them credit for the reason that so very many meds have little to no effect on me now and some lasting bad effects from too much of some good things like roids.
As I said I know that times have changed and I have read some glowing recommendations of particular staff members at both places, so I would suggest that you take the clinic ?s to the general board where a lot more people will see it and find out what some folks with more recent experience have to say.
Stick around and get to know us, it's worth the effort!!! We love Mom's around here just not beasts  ....Tim
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stpp77
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Re: hi, first time here
« Reply #12 on: Aug 30th, 2006, 7:16pm » |
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Hi, thanks for all the great information and tips--I really appreciate the support and input given. So, I went to the headache clinic today, and doc started me on imitrex injections, oxygen, and periactin. I am hoping this will help with the headaches and get me through some of the tough times. However, he did bring up the possibility that I am also having migraines too--is this common to have both? Please let me know if anyone has any input.
Take Care!!
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thebbz
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Re: hi, first time here
« Reply #13 on: Aug 30th, 2006, 9:41pm » |
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77
Yep for me anyway migraines settle in to get ya while the demon reloads. Not every episode though. Weird.
I dont know about the number I ain't alone though
Hope your doing better. 02 rocks. Check out :clustermasx.com
thebbz
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