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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Newbie to the group

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Newbie to the group (Read 803 times)

SnowWhite

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Newbie to the group
Jul 1^st, 2009 at 6:17pm

I am so glad to find a group that can understand how bad these can be. My father suffers from episodic clusters, they used to be cyclical. At age 19 I started getting them after battling migraines since I was 5 years old. I am now 25 (this month) and after my last neurologist told me it was impossible for me to have clusters because I was a woman I found a new one who confirmed the diagnosis. I have cyclical clusters and migraines. Cry

Unfortunately I have been tried on every medication out there for preventative for my migraines and the only thing that seems to help are injections of DHE (dihydroergotamine) but nothing helps the clusters.

Has anyone experienced a migraine that turns into a cluster before? I never have until recently and I was flabbergasted.

I wish I could make my friends understand how bad this. They just tell me it is a bad migraine and I should lay down. The seem to overlook my swollen dropping eyelid, stuffy nose, and drooling out of one side of my mouth. The pacing is horrible and it scares my cats, I am thankful and lucky to have a boyfriend who even though he cannot fully understand the pain he is there for me every step of the way.

I just hope the oxygen treatments work, I am grasping at straws here and am not sure what to do if it doesn't. Undecided

« Last Edit: Jul 1^st, 2009 at 6:18pm by SnowWhite »

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lynxgal CH.com Newbie Offline I Love CH.com! Posts: 11 Ottawa Ontario Canada Gender:	Re: Newbie to the group Reply #1 - Jul 1^st, 2009 at 7:33pm Hi SnowWhite! I'm new as well and definately have migraines. Clusters were suggested to me last Friday as the source of this new nastiness. Wanted to pop in and say hi. LG
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Newbie to the group Reply #2 - Jul 1^st, 2009 at 7:33pm I too got migraines as a kid, but they morphed into CH when in my 20's. Since starting CH I rarely ever would get a migraine, and since going chronic, never. Jerry
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SnowWhite

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Re: Newbie to the group
Reply #3 - Jul 1^st, 2009 at 7:54pm

Thank you both for the responses!

I wish I just had migraines, but I seem to have both. If I am not in a migraine cycle I am in a cluster cycle. I can't seem to win.

Cluster were suggested to me at 19, but my neurologist at the time said no because I am a woman so he diagnosed them as cluster-like headaches, I flat-out told him that sex did not matter if the symptoms and pain were there and found a new neurologist that saw one of my clusters and gave me the diagnosis and is trying his hardest to help me.

~Ash

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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: Newbie to the group Reply #4 - Jul 1^st, 2009 at 10:34pm Welcome, Just wanted to let you know i can bust a CH in about 5 minutes with oxygen!! This way there is no need for me to turn into "dopey" Coach Bill
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Guiseppi

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Re: Newbie to the group
Reply #5 - Jul 1^st, 2009 at 11:50pm

Welcome to the board. We've got several dual diagnosis people on the board, hopefully they'll chime in. The oxygen must be used correctly or it's worthless. Take the time to read the "oxygen info" link on the left. The keys are:

Start it at the first sign of an attack, high flow regulator, non re breather mask. The lungs must get only pure 02, no outside air, no exhaled air. Hoping it works as well for you as it has for me.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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