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Title: NEW to the Board & Beast Post by ...TAMI... on Dec 21st, 2006, 12:20am Hello... First off, I would like to say, I am very grateful for this website, and would like to say from the bottom of my heart - Thanks for being here for me. I have someone to talk to and - just vent! The pain gets so bad - it scares me... no- terrifies... better yet - horrifies me. I am a 43 yr old female from San Diego, California and was diagnosed in Aug'06. My doctor says, I am a rare case - being that I am female and my age. (?) I have never heard of Cluster Headaches my whole life, and at first, I thought it was a dumb name for a new sickness. I am serious. Until, of course, I did some research. I apoligize for ever thinking any part of this was dumb. As I have said, I'm a brand newbie. I am currently using Oxygen - as it seems, so far to "help" me in any ways - and I say "help" lightly - because I feel it doesnt help - really -. The thought of having to carry an oxygen bottle with me every where I go - makes me feel so old - so....old... ya know? I just dont like it. And having to "depend" on it - because it's life or death? grrrrrr.... -43 yrs old and on oxygen for the rest of my life. It's so unbelieveably unfair. It almost makes other people uncomfortable when around me because they fear of it happening. It's really been hard. I almost have to alienate my own family just so they don't see my hits. It's hard to accept - a demon headache- with no cure......."me". Ok... --Whew!-- Got past that point! Thanks Ya'all for listening. I really hate to complain out loud - but - I think this thing is getting the best of me - and it does scare me. I never imagined the magnitude of this pain could ever exist and live through it - time after time - night after night - and till- days on end. I do have a couple questions. I was wondering if anyone else has ever passed out in the middle of a hit? I tend to hold my breath when it's at it's worst - and pass out. I dont realize half the time I am holding my breath because it hurts so bad. But when I come to - I am at the same place of pain. Is this uncommon? Also, Can it affect your vision? Temp. blindness - double or blurred vision? Anyways, Thank you for your time. And I appreciate any support you can give. ***HUGS*** ....♥TAMI♥.... |
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Title: Re: NEW to the Board & Beast Post by georgej on Dec 21st, 2006, 2:06am Welcome to Clusterville, Tami. You know, your doctor may say that you're a "rare case", but it's obvious to me (after spending some time around here) that CH isn't really gender-specific. Women get them far more frequently than is generally acknowledged. Also, it seems that onset in women often comes later in life than it does with men. This is purely anecdotal, you understand, but it does seem to be a trend we see here. You say that you "almost have to alienate your family" so they don't see your hits. Sounds as if you're a "hider". Some of us prefer to have others around while we're going through a hit. Others (like me) pretty much have to be alone. We're "hiders". It's a common tendency. I think you'll find that it's very infrequent that people "pass out" from the pain. But if you're holding your breath, that might do it, all right. Holding your breath won't help. But I'm sure that you know that. :) Again, welcome. Stick around. Pull up a chair. Plenty of other people will be along to offer their thoughts--we'll be happy to help in any way we can. We know what you're going through. Best wishes, George |
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Title: Re: NEW to the Board & Beast Post by Barry_T_Coles on Dec 21st, 2006, 2:38am Hi Tami Welcome to the best little nut house around, what the people here don’t know about CH probably isn’t worth knowing. It used to be thought that CH went away with age, if that’s the case then I’m going to live to 100 as I didn’t get it till I was 50, then had a 5 year break before going chronic in 2004. As for passing out; yes some of us do when the pain becomes so intense that the brain switches off, unfortunately we don’t stay out cold for long enough as when you come to again the pain is still there. Cheers Barry |
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Title: Re: NEW to the Board & Beast Post by ax on Dec 21st, 2006, 3:15am Welcome to the board Tami |
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Title: Re: NEW to the Board & Beast Post by Guiseppi on Dec 21st, 2006, 12:33pm Welcome Tami from a fellow San Diegan. And great timing on your part. We are doing a big meet and greet in San Diego the weekend of January 5-6-7 at The Pader Trail Inn in San Diego. If you can at least come by Saturday and sit with us for a while you will learn more then from a hundred doctor visits. The fact that your doctor said you are a rare case because you're female sets off big red warning flags that he doesn't know diddly about CH. Look around the board and you'll see about a gazillion females here with CH. I'll IM you my phone info please give me a call about the San Diego meet and greet. We're up to about 25 people, it's a tremendous learning opportunity. No doubt in my mind we can help you a bit!! Guiseppi |
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Title: Re: NEW to the Board & Beast Post by crftymom on Dec 21st, 2006, 6:48pm Welcome Tami. I too am in San Diego! It would be great to see you in January. It will be my first time meeting a CHr and I am too excited. Sorry you have to be here, but this is the best place to be for info, support, and some of the strongest shoulders ever. I hope to meet you in Jan. Margo |
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Title: Re: NEW to the Board & Beast Post by Linda_Howell on Dec 21st, 2006, 7:27pm Darn Guiseppi, I just saw this and you got here first. Good for you. Tami, it might be kind of scary for you to come to a place and meet total strangers but we would love to be able to talk to you and help you in any way we can if you come to the meet-n-greet. We are not ax murderers and in fact Guiseppi is a SD police officer so there will be nothing you need to fear. Please consider it. Guiseppi is correct in that you will learn more in a few hours with us than in a whole life-time with Dr.s Linda |
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Title: Re: NEW to the Board & Beast Post by ...TAMI... on Dec 21st, 2006, 8:14pm Oh my..... I want to Thank -you all so much - for such a warm welcome. What great responses! This is such a big weight off my shoulders. I hope to hear and chat with you all some more soon. I am so eager to learn more. I wont, however, be able to attend to your "Greet and Meet" - Jan.5-7... What a loss for me.... Hopefully - there will be another one soon that I can plan to attend. Thank you for the invite and -again - thanks for the warm welcomes and input. **HUGS** Tami |
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Title: Re: NEW to the Board & Beast Post by swimchica623 on Dec 22nd, 2006, 12:19pm Hi Tami! Welcome although I wish I could have met you under happier circumstances. I'm a newbie too I had my first cycle in July and was rightly diagnosed this fall. That was actually a very short time to go misdiagnosed with "migraines" and I am verrrrry lucky to have such a good neurologist! Sounds like you have a pretty good nerulogist too, although the other posters are right, there are more female CHers than they seem to think. I've passed out during hits but its not very common, you know I may have held my breath now that I thik of it. I posted a question somewhere I think under the specific category if you want to read it. The ER has knocked me out with drugs becuase the pain is so bad too but thats a different kind of passing out. I don't like to be completely alone during hits, its too scary for me, but maybe that's something that happens with youth too (I'm 21). I found that contact with someone really helps, just a little bit like holding someone's hand. I don't like a lot of people to see them so I try to get away from people, but I hate isolation. One person there holding my hand is ideal. Most of my hits I don't realize how many people are there, just the one person that I hold there hand, and I'm embarrassed when I realize there were 4 or 5 people in the room the whole time. Wishing you lots of pf days in the future. ;;D Lisa |
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