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Topic: Hello all - I'm new here (Read 238 times) |
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Headymom
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I am in the 4th day of a moderately bad (around a 6-7 on the kip scale) Cluster attack and just found this board. In brief, I am 29, married, have 4 children (ages 9,6,3, and 1 - our 6 year old has Autism) and have had clusters for about 4 years but was just formally diagnosed about 16 months ago. The right side of my head feels as if it is going to explode and I have been pacing and crying for an hour or two now. My husband works evenings so you can imagine how difficult it is to keep up with all the children alone with one of these. As I type, the letters are all blurring together. I have been unable to stay on any meds for any amount of time because they make me feel too "out of it" to function with the kids. ??? I have not slept in almost 36 hours and feel like I am going to drop any time now.  No one else seems to understand exactly how bad these get. My husband tries but he only has the normal, run of the mill HAs to relate to. I am supposed to be chaperoning a field trip for my daughter's 4th grade class on Wednesday to the SYMPHONY of all places. If this is not gone by then I will scream for sure  I am hoping this will give me a place to get advice and find out what has helped (or at least made the attacks bearable) for all of you. Thanks for listening, see you on the boards!
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Charlie
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Re: Hello all - I'm new here
« Reply #1 on: Oct 21st, 2002, 11:59pm » |
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Welcome aboard and sorry you had reason to find us. I was dumbfounded to find so many. If you read most of the stuff on the site and a good number of posts, you will find something to help you in some fashion. Don't pay too much attention to the in house grumbling. It's just something we seem to do. As one of our old timers says: Take what you need and leave the rest.
Here is a letter from Simon which I think is great to print for explaining this horror to family and friends:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Here is a link to a technique I found very helpful:
http://www.chhelp.org/circ.html
Keep in touch and let us know how things are going.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Drk^Angel
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Re: Hello all - I'm new here
« Reply #2 on: Oct 22nd, 2002, 12:12am » |
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Welcome to the board! Sorry that the beast is smashing your cranium into putty with a bat that has long, rusty nails nailed through it. Good luck!
PFDAN.............................. Drk^Angel
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Mastifflvr28
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Re: Hello all - I'm new here
« Reply #3 on: Oct 22nd, 2002, 12:30am » |
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Welcome home Heady,
Please, in between attacks check the links on the left. There are meds that don't make you feel "out of it".
Oxygen for one!
Please research for your own sanity,
Good luck, welcome to the family.
Mast
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Mastifflvr28 (aka Michelle A.)
Be part of the solution
http://www.ouch-us.org
OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
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Jim R
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Re: Hello all - I'm new here
« Reply #4 on: Oct 22nd, 2002, 6:31am » |
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Welcome Heady and I ditto Mast's post. O2 is the best for not feeling out of it as well as verapamil, which many of us here are on... - Jim R
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
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Jenny G
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Re: Hello all - I'm new here
« Reply #5 on: Oct 22nd, 2002, 7:42am » |
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Sorry we had to welcome you to this family. 
I know how hard it is as a mom when your household depends on you. When you're not in pain, you're exhausted from all the interuppted sleep. It sucks...
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Riccardo
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Re: Hello all - I'm new here
« Reply #6 on: Oct 22nd, 2002, 7:53am » |
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Sorry to say you welcome here.
Your position" is not too happy.... more than one child seems me too much to deal also with the beast.... Sorry!
Try to find here the meds that will help you with the less of side effects.
Italian kisses to the family
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Riccardo OUCH-Italia
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Dan H
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Re: Hello all - I'm new here
« Reply #7 on: Oct 22nd, 2002, 9:13am » |
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Welcome Heady,
Sorry to meet this way. But you will find more information on this site than you can imagine.
4 kids!! That is alot to handle without the beast!
Hang in there.
............ Dan H
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Dan H (a.k.a. dlh524) - Orting, Washington
Dream as if you will live forever. Live like you only have today. Life is priceless. The richness in life are those we call friends.
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Bob P
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Re: Hello all - I'm new here
« Reply #8 on: Oct 22nd, 2002, 9:54am » |
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Now I may have read your post wrong but I don't think so.
Have you had the same headche for the past 4 days?
Are you hoping this same headache is gone by Wednesday?
If you answer yes to either of these questions, I seriously doubt that you have clusters.
A cluster attack normally lasts 1/2 hour to 2 hours. Then the pain is gone, completely, until the next 1/2 hour to 2 hour attack.
If you really want to do yourself a favor and treat the right condition, I'd dig a little deeper into your diagnosis.
I calls 'em likes I sees 'em.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Riccardo
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Re: Hello all - I'm new here
« Reply #9 on: Oct 22nd, 2002, 10:06am » |
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hmmmmm I'm waiting for this, Bob.....
My opinion:
on Oct 21st, 2002, 11:44pm, Headymom wrote:| I am in the 4th day of a moderately bad (around a 6-7 on the kip scale) Cluster attack and just found this board. ..........and I have been pacing and crying for an hour or two now. |
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...and same for the end....
This is the main thing for which we confuse the newbies.
I said in a previous post that the "Attack" definition may be confused with the "cluster series"
IMHO, HeadyMom have had a "cluster of attacks" for 4 days. But the "Attack" itself lasts 1 or 2 hours, and she said this.
Please HeadyMom, clarify this point.
We "old-timers" are, sometimes, "mummified" in our definitions (exact, anyway, but the newbies that come here cannot know the exact definition of clusters)
This post is absolutely not against you (or any one else). It want to be an example of misinterpretation of 'newbies' posts.
Sure, I may be wrong, but this will help us to understand next posts from next newbies
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| « Last Edit: Oct 22nd, 2002, 10:08am by Riccardo » |
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Riccardo OUCH-Italia
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Margi
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Re: Hello all - I'm new here
« Reply #10 on: Oct 22nd, 2002, 10:11am » |
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Hi Heady,
I'm glad someone else noticed this from your post. Thanks for speaking up, Bob and Riccardo. What you're describing sounds more like a migraine-type headache, because of its duration. Cluster cycles can last for days/weeks/month. But individual attacks come and go and leave you relatively pain free in between attacks, except for what are referred to as 'shadows'.
If what you are going thru IS migraine, oxygen will also help you and will leave you feeling no side effects - other than (hopefully) pain freedom.
I'd sure get a second opinion from a different doctor if you can, Heady. More and more, we are seeing doctors become more educated in diagnosing true clusters, but there are still some out there who are using this disease as a catch-all for head pain they can't otherwise identify. Incorrect diagnoses lead to incorrect meds, which is so dangerous. 
Head pain of any kind is nothing to mock and please know that we are not trying to do that. We are trying to help you identify and treat what's going on for you.
Please read thru the cluster traits and take the cluster quiz on the left. Unless you've worded your post incorrectly, I'd sure say you're not going thru clusters. I really hope you're NOT, actually.
I hope you find relief soon, Heady. Hang in there and stand up to your docs until they give you answers that will help you.
p.s. you may think it strange that you are getting 3 opinions here from 'laypeople' that contradict what a doctor has told you. Because cluster headaches ARE so rare, a lot of general practitioners are not as knowledgeable as they could be about this disease - simply because they don't often see true cluster headaches occuring in the general population of patients. The group assembled at this website really HAS done mega research over the years, and we HAVE worked closely with a lot of neurologists in defining this disease because we live with it in our daily lives.
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| « Last Edit: Oct 22nd, 2002, 10:38am by Margi » |
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Headymom
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Re: Hello all - I'm new here
« Reply #11 on: Oct 22nd, 2002, 11:44am » |
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Thanks for all of the replies, and to those last posts, let me clarify. You are correct - I worded it wrong. I have had series of attacks, not one long continuous one  That would be unbearable! I guess I was not familiar with all of your ways around here and just assumed you would know what I meant, sorry I will check out some of the other methods of coping that have been metioned. I finally got to sleep early this morning. That PARTICULAR attack lasted about 3 hours or so.
Again, sorry if you misunderstood, I don't want to get lashed out at as one of the "wannabees" I have read about. Who on Earth would want to fake having these things???? ???
Hope you all have a good and pain-free day!
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Margi
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Re: Hello all - I'm new here
« Reply #12 on: Oct 22nd, 2002, 11:50am » |
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Ok, Heady - thanks for clearing that up.
So, what meds have you tried that are leaving you feeling loopy? Are you using any abortives?
Have you looked into trying the Dramamine OR Benadryl to help you get to sleep?
Welcome to Clusteropolis, by the way.
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Bob P
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Re: Hello all - I'm new here
« Reply #13 on: Oct 22nd, 2002, 12:03pm » |
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It just seemed funny that you would say you've had it for 4 days and hope it's gone by Wednesday.
Even if you're talking about a cluster period and not an individual attack, a 6 day cluster period is awful wishful thinking.
Good luck to you.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Opus
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Re: Hello all - I'm new here
« Reply #14 on: Oct 22nd, 2002, 9:46pm » |
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Headymom, Boy you have your hands full, 4 kids and one with autism. I have one with autism and can't imagine having any more. You are very strong in my book. Ask your doc about Imitrex (shot or spray) It is the only FDA aproved cluster abortive that docs know about and will make you more comfortable about outings knowing you have a way out. Stay away from narcotics if you can they ussally make things worse. Cover your head with Ice, try the water x2 (to your left) and caspian (hot pepper ) works for some. PJB
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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Lori
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Re: Hello all - I'm new here
« Reply #15 on: Oct 23rd, 2002, 11:58pm » |
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Hi Headymom,
welcome to the board..wish you didn't need to be here. Please be sure to read the links to the left as you will find so much wonderful info. To be sure you have clusters, make sure you take the cluster quiz also. Just to be sure you get proper treatment. Also, please start keeping a headache diary if you haven't started one yet. It's good to note everything possible from time HA begins to intensity and end time. It also helps you when you seek treatment to get an idea of how different things work and how long they take to work. I'm real sory your having to deal with this especially with your children. I have two, and it was hard on us all. We moms are so busy and don't havve time for clusters!
Again, welcome and hope you find some relief.
PFDAN
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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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