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Cluster Headache Help and Support >> Getting to Know Ya >> Newbie to the group
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Message started by SnowWhite on Jul 1st, 2009 at 6:17pm

Title: Newbie to the group
Post by SnowWhite on Jul 1st, 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.   :'(

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.  :-/

Title: Re: Newbie to the group
Post by lynxgal on Jul 1st, 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  

Title: Re: Newbie to the group
Post by Callico on Jul 1st, 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

Title: Re: Newbie to the group
Post by SnowWhite on Jul 1st, 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

Title: Re: Newbie to the group
Post by coach_bill on Jul 1st, 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

Title: Re: Newbie to the group
Post by Guiseppi on Jul 1st, 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

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