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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi All. Sean Here, New Member
        
(Message started by: scamrtst on Jul 18^th, 2005, 11:50am)

Title: Hi All. Sean Here, New Member
Post by scamrtst on Jul 18^th, 2005, 11:50am

Good day all-

I am a new member here and recently diagnosed with CH, after several years of misdiagnoses as migraine. I am currently in what I believe to be my 4th cluster and about week 5. I have up until this point been fortunate in that I tend to get fairly long respites from the Beast (about 2 years) so for that I am grateful to the powers that be in the universe. Just getting started on the medications so not quite sure what will or won't work for me. However I am doing the H2Ox3. I do have to say it is quite refreshing to see the amount of humour everyone here is able to display. And now I know there are people who can relate to my head banging, rocking, crying, eye sagging, "deal making'' with the universe, and exceptionally colorful language I will use during an attack. Oh, I recently completely shaved my head bald as I was trying to pull my hair out last week when the MotherF***er showed up uninvited at about a 9.
I look forward to meeting all of you and hope that someday there will be no need for this sight.

Peace and a CH free day,

Sean

"I should work for the circus because an elephant stands on my head 4 times a day."

Title: Re: Hi All. Sean Here, New Member
Post by jcmquix on Jul 18^th, 2005, 12:56pm

Welcome aboard.. :(

Nice too meet you, just wish it was not here. :)

I am currently in cycle also, but I am taking scrip meds from the Nero Dr. I have been PF for 6 days now, I just hope it holds.

The best advise I can give to someone new is Read, Read and Read more, there is alot of information on this site about CH, its the best information you will ever find.

As for the people here, they are the best !!! I am fairly new myself and I was taken in, and treated like an old friend, and I got plenty of support here.

I was at the end of the line when I got here, now I have hope to fight this BEAST...

Fight the Good Fight, Stick around !!!!

PFDAN's to ALL !!!!

Title: Re: Hi All. Sean Here, New Member
Post by Sandy_C on Jul 18^th, 2005, 8:10pm

Welcome Sean. This is the best place you could have ever found for information and support. Yes, we all vent, and believe me, there has been come "colorful" language on these boards, but for information and support, you absolutely cannot beat the veterans here. I'm sorry to have to meet you under these circumstances, but I'm happy to meet you. Stick around and read, read, read. Ask questions (no question is too stupid, believe me cause I've already asked them).

I wish you PFDAN. :)

Title: Re: Hi All. Sean Here, New Member
Post by Kris_in_SJ on Jul 18^th, 2005, 8:20pm

Welcome to the family, Sean.

I must tell you that I wish I could shave myself bald. However, we women must have at least a LITTLE hair on our heads. I keep mine very short since the last two cycles, I found that pulling the hair on the opposite side of my clusters seemed to soothe me a bit. I thought I'd look a bit funky with a drooping eye on one side and no hair on the other, however! LOL.

I'm also episodic every 3-4 years with episodes lasting about 12 weeks. My salvation has been high dose Verapamil, a Prednisone taper and Trex injectibles. However, during my next 2 (hopefully) PF years, I'm investigating alternatives as well. My "cocktail" kept the worst of my cycle to 6 weeks last time. I'm shooting for better next time around.

Keep posting. And when things get tough, remember there's a light always on at this wonderful place.

Hugs,

Kris

Title: Re: Hi All. Sean Here, New Member
Post by Topical on Jul 19^th, 2005, 5:58am

Hi Sean, sorry to hear about your CH. It reminds me of before I found a treatment to control it. I did all that you described too. Total hell. Only 4 hits in 5 weeks? That's pretty "good" (if you can call it that). Are you taking any meds or just the H2O?

I hope you can line up an abortive med for when you feel the pain come on. Keep reading, asking any questions and sharing your thoughts when it is all too much or if you just want to ramble on like I am doing now. :)

Take care and be PF!

Title: Re: Hi All. Sean Here, New Member
Post by Cooked Brain on Jul 20^th, 2005, 9:12am

Hi Sean, welcome :)

Title: Re: Hi All. Sean Here, New Member
Post by seasonalboomer on Jul 20^th, 2005, 9:39am

on 07/18/05 at 11:50:01, scamrtst wrote:

Oh, I recently completely shaved my head bald as I was trying to pull my hair out last week when the MotherF***er showed up uninvited at about a 9.

That's a new one from what I've seen. Although I'll share that there are times in a hit when the feeling of my hair "poking" in my head, my eyeglasses on the bridge of my nose are an "issue", or sometimes even the feel of tears on my cheeks, just are so punctuated that they are attention getting.

Hey, maybe you should take up swimming, I understand that shaving one's head can really improve your lap speed....... :P

Welcome to the bad brain confessional.

Scott

Title: Re: Hi All. Sean Here, New Member
Post by paul_pero on Jul 21^st, 2005, 8:55am

Hi Sean

I'm episodic for 14 years and only diagnosed 2 years ago. This year I got oxygen and it has worked wonders for me. First pain relief for these HAs in 14 years.

I've got plenty of hair to pull, but unfortunatley it doesn't really help with the pain for me. I've tried banging my head against a wall or floor and that seems to take my mind off the pain for a second or two. ;)

Wishing you PF days.

Title: Re: Hi All. Sean Here, New Member
Post by nani on Jul 21^st, 2005, 12:44pm

on 07/20/05 at 09:39:05, seasonalboomer wrote:

. Although I'll share that there are times in a hit when the feeling of my hair "poking" in my head, my eyeglasses on the bridge of my nose are an "issue", or sometimes even the feel of tears on my cheeks, just are so punctuated that they are attention getting.

While in Dallas, a med student from Jefferson Headache Center conducted a study on many of us. It seems that Allodynia ( a condition where skin is highly sensitive to pain stimuli) is probably a common disorder shared by vascular headache sufferers. You have no idea how relieved I felt when I realized that I'm not the only one whose skin and hair hurt.

Title: Re: Hi All. Sean Here, New Member
Post by thebbz on Jul 21^st, 2005, 10:51pm

Welcome Sean,
Does it seem as though the air next to the skin hurt's too. ;)
BB

Title: Re: Hi All. Sean Here, New Member
Post by cazman on Jul 24^th, 2005, 12:46pm

welcome sean sorry to see you need to be here but at least now you have some support wich is what this site does best the info posted here is from years of many sufferers trying this and trying that to get thru each day if not each attack one at a time
for me this site has saved my life and kept me going thru some very hard times , read everything here there are all kinds of weapons to use on the beast ,theres alot of hope with some alternative treatment that i personnally swear by and now have over 3 weeks pain free from using , so research all you can and ask questions we are not doctors here but we tried just about everything under the sun collectively good luck and i hope we can help.