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moms
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family suffers with cluster headache member
« on: Jan 5th, 2005, 1:36pm » |
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This is my first time at this message center. I have a son that is 33. He has been suffering with clusters for the past several years. At the time he lived several hours from us and he didn't reallt say any thing about them when we talked. Now that he has lived here for the better part of a year he has had 3 horrible headaches where we wnt to the emergency room and says now that he has them non stop just not severe. I have sent him to a nerologist and a primary. He is taking topamax and pain meds tha are habit forming. I have tried to get him to see a chiropractor that works with cluster headache suferers, but he won't go. He is misserable all the time and talks constantly about how happy we should be we don't have them. I rub his neck read everything I can get my hands on about these headaches find people for him to see. I just don't know what else to do when I tell him about pain management or any thing else I read he says it's just crap Help!
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AlienSpaceBabe
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Re: family suffers with cluster headache member
« Reply #1 on: Jan 5th, 2005, 1:47pm » |
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Hi moms,
My advice, such as it is, would be that you have him return to the neurologist for a proper diagnosis. With the right diagnosis, he and his neurologist can find medications that will help prevent the headaches and will not cause him to become addicted.
Most of us here find that pain medications do not work, and sometimes make things worse. Few, if any, of us have found any relief from chiropractors.
A proper diagnosis is essential in order to receive effective treatment.
Lizzie
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Jeepgun
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Re: family suffers with cluster headache member
« Reply #2 on: Jan 5th, 2005, 1:49pm » |
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Hello and welcome, Moms. Sorry to hear about your son. Chiropractors THINK they can fix CH, but they can't. It's not a musculoskeletal problem. Take a browse through the literature on this site, and read through the medical info. This will give you the most common medications that are used to prevent cluster headaches, and the ones used to abort cluster headaches. There is also some literature there for supporters of family members, friends, or co-workers who have cluster headaches.
There are a great many things that chiropractors are able to cure or relieve, but cluster headaches, unfortunately, are not one of them. I'm sure other people will have better and more comprehensive advice. For now, I just wanted to welcome you, and if you can, get your son over here so he can get the right information, too.
So sorry you have reason to seek us out, but so glad that you've found us. May your son find some relief from the pain, and may you find a knowlegable doctor/neurologist who is willing to help.
-Frank
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Gator
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Re: family suffers with cluster headache member
« Reply #3 on: Jan 5th, 2005, 1:51pm » |
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Hi moms,
Welcome. Sorry you had a reason to come here, but here is where you will get the best info available on Cluster Headaches.
Firstly, I would say that pain meds do nothing for the ch and can cause more pain in the form of rebound headaches. Getting off them is a good idea. Second, forget the chiropractor. CH can't be cured by cracking your neck.
Topamax is a commonly used preventative med for ch. Some people have bad side effects and some don't. Something else he needs is an abortive. Imitrex Injections and Zomig NS are two of the most common.
The best way to help him is to learn all about them. If you have not read them yet, the links to the left have tons of good info in them. There is even more on the OUCH website. Read everything you can and print stuff out that seems applicable. Unfortunately, you may end up teaching whatever doctor about CH.
Here is a link to read and print for him take to his doctor. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
Here is a link to some non-prescription alternatives different people have used to help with the pain:
http://www.clusterheadaches.org/resources/non_script_treat.htm
If he are currently taking medications, I would suggest he talk with his doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.
Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. If his doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help him set it up. Here is a link that tells about using O2 and shows a setup using welder's O2.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Here is a link to a letter that may help explain things to friends, family and co-workers.
http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc
Again, welcome to CH.com. There's no better place in the world for info and support.
Gator
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becky8
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Re: family suffers with cluster headache member
« Reply #4 on: Jan 5th, 2005, 2:05pm » |
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Moms,
I want to support you and I will help in any way. I would tell you things, but Gator said it best. He helped me when I first came, so read the links he sent you to and even print them out for the doctor. You found the best place for your son if he truly has CH!!!Best of luck!
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nani
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Re: family suffers with cluster headache member
« Reply #5 on: Jan 5th, 2005, 2:09pm » |
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I'm sorry you and your son are having a bad time. You have been given very good advice. I hope you get some answers and relief for your son.
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don
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Re: family suffers with cluster headache member
« Reply #6 on: Jan 5th, 2005, 2:14pm » |
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Forget the chiro. Any reputal chiro with even the smallest knowledge base on CH will tell you he can not help with CH. If you are told otherwise then you only making the car payment for the Chiros Mercedes.
Read and print out all the treatment options you find here and the other sites provided to you. Take them to the next neuro appointment. A well armed patient is a patient a neuro will listen to.
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| « Last Edit: Jan 5th, 2005, 2:15pm by don » |
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BlueMeanie
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Re: family suffers with cluster headache member
« Reply #7 on: Jan 5th, 2005, 2:50pm » |
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Hello Moms,
You should have your son check this site out. Have him take the Cluster quiz to the left of this screen. 02 is probably the best med to try for starters. Get the Oxygen info and print it out to take with to the doc. As Don said, the more he knows about treatment options , the easier it will be to walk out of the docs office with the correct ammo he needs to fight the Cluster Headaches.
Hope he gets some relief soon.
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Carl_D
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Re: family suffers with cluster headache member
« Reply #8 on: Jan 5th, 2005, 8:31pm » |
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Moms. Definitely have your son view this site and take the cluster quiz. The pain meds will only mask some symptoms, but don't do much for cluster headaches really. There is lots of great info on this site as far as treatments, coping, etc.
Peace,
Carl D
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Kris_in_SJ
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Re: family suffers with cluster headache member
« Reply #9 on: Jan 5th, 2005, 8:44pm » |
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Hi Moms - Welcome.
Ditto to all the above - especially to Gator's links. Also be sure to check out the supporter's board here where you can chat freely with others who live with those who are suffering.
Also - if necessary, get your son to a different doc. Narcotic, addicting drugs are rarely prescribed by docs who know their CH's.
At any rate, know we're here for you and for him.
Many Hugs,
Kris
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Charlie
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Re: family suffers with cluster headache member
« Reply #10 on: Jan 5th, 2005, 9:21pm » |
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Hi Moms:
Gator says it well here. You should find many good ideas and ways to deal with this horror among these pages. When your son or you show up here, you are among people who understand exactly what he's going through. Right away that should be a good start.
Chiropractors can do nothing for clusters, nor much of anything for that matter. A neurologiost or a good GP will be much more helpful. There are no painkillers that will have an effect on CH pain.
Welcome aboard and please look us over and let us know how things are going.
Charlie
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Ree
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Re: family suffers with cluster headache member
« Reply #11 on: Jan 6th, 2005, 1:07pm » |
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Great advice guys... Man we are one up and running organization with the most compassionate support... I really cant add anything... everyone beat me to the post...I can say Welcome and Good Luck... love ree
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minnie
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Re: family suffers with cluster headache member
« Reply #12 on: Jan 6th, 2005, 1:41pm » |
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welcome Moms you've already recieved the best advice.besides posting here you also may want to check out the supporters section.You will be welcomed with open arms on all the boards here.good luck theres tons of reading to do  .
Minnie
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Maggi Jons
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Re: family suffers with cluster headache member
« Reply #13 on: Jan 7th, 2005, 7:39am » |
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hey moms
perfect info above,
i wanna ad Water....and i mean a lot of water..
flush the beast out!!
helps me hold back the beast if all med fail
best of luck
maggi
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RichardN
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Re: family suffers with cluster headache member
« Reply #14 on: Jan 7th, 2005, 8:18pm » |
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Welcome moms & son,
One of the worst parts of this beast is thinking you're the only one, and no-one understands. Everybody here understands and, as said all the time . . . we''ll leave the light on. There's always someone here, someone else "doing the dance"
PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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