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        Cluster Headache Help and Support >> Getting to Know Ya >> Girl w/weird doc likes this place, shadows?
        
(Message started by: fiddlehead on Jan 24th, 2008, 5:05pm)
Title: Girl w/weird doc likes this place, shadows?
Post by fiddlehead on Jan 24th, 2008, 5:05pm
Thank you to everyone and anyone involved in making this website so good.  I do not know how my family and I could have gotten through the last two weeks without this.   I ended up in the ER last night after going 12 hours w/a rebound (I think).  Nobody there knew about the oxygen.  It took me from an 8kip down to a 4 or 5 kip, which is way good enough for me.  I do not think they thought anything would happen, and it may help future 'victims' who end up there.  

Shadows:  Do you get shadows at the end of cycle as well as the beginning?   After that 12 hour HA, I feel some sort of relief....except a lot of pressure in my sinuses, dizzy and wierd 'shadows' ...not exactly my enemy, not exactly my friend either.  I've been trying to look in archives for that but maybe somebody could chime in.

(as i write this, getting worried about the major pressure in my head...anyone else get that? no pain)

Thanks again.....Helen
Title: Re: Girl w/weird doc likes this place, shadows?
Post by GrandPotentate on Jan 24th, 2008, 9:49pm
Do some searching on this site for shadows - they are kind of odd.  For me, it has all of the characteristics of a hit, except for very little pain.  They are sometimes the first indication of a new cycle, before the real hits.  They also tend to happen a few times after the real hits at the end of the cycle.  

Or sometimes a get a little clump of shadows between cycles, just to keep me in my place.
Title: Re: Girl w/weird doc likes this place, shadows?
Post by thebbz on Jan 24th, 2008, 11:55pm

shadow:It's the demon parked with the motor running, waiting to hit the gas again.
Hang in there, its tough but your tougher.
thebb
Gotta get the 02
Title: Re: Girl w/weird doc likes this place, shadows?
Post by brewcrew on Jan 25th, 2008, 7:56am
A 12-hour headache is not characteristic of CH. That said, it is not all that uncommon for CH sufferers to get more than one type of headache. You might want to have your neuro check that out. In other words, treatment for CH might not touch other things that are going on.
Title: Re: Girl w/weird doc likes this place, shadows?
Post by fiddlehead on Jan 25th, 2008, 9:18am
Yes, it is hard for me to know what the heck is going on.  I've had 3 very different types of headaches in the last 2 weeks.  Most of them were under an hour.  The 12 hour one I 'self diagnosed' as a rebound.  It didn't respond to anything...and then when I finally got some oxygen it got better, but was it already getting better?

I think my husband and family are sick of hearing about the headaches now, as I'm on this site 24 hours a day finding out new things that I can do.  And using scientific terms, such as 'The Beast' and 'Shadows'. (Hearing flying monkey music from Wizard of Oz)

Found the name of a new neuro....also going to a medical library to find some 'evidence' about female CH to throw in the face of adversity (aka the 'weird doc') before I fire her.

Thanks for the support, again, I feel totally different about my situation.  Also, HAfree for 18 hours....small miracles. [smiley=sleep.gif]

Helen
Title: Re: Girl w/weird doc likes this place, shadows?
Post by Ghost on Jan 25th, 2008, 12:20pm

on 01/25/08 at 09:18:54, fiddlehead wrote:
Yes, it is hard for me to know what the heck is going on.  I've had 3 very different types of headaches in the last 2 weeks.  Most of them were under an hour.  The 12 hour one I 'self diagnosed' as a rebound.  It didn't respond to anything...and then when I finally got some oxygen it got better, but was it already getting better?

I think my husband and family are sick of hearing about the headaches now, as I'm on this site 24 hours a day finding out new things that I can do.  And using scientific terms, such as 'The Beast' and 'Shadows'. (Hearing flying monkey music from Wizard of Oz)

Found the name of a new neuro....also going to a medical library to find some 'evidence' about female CH to throw in the face of adversity (aka the 'weird doc') before I fire her.

Thanks for the support, again, I feel totally different about my situation.  Also, HAfree for 18 hours....small miracles. [smiley=sleep.gif]

Helen

tell them to put on their big boy and big girl panties and get over it. CH is forever! so far. there is no cure and you are the one hurting. They need to support you or stfu and stay out of the way!

Not any better way to say that. I have the same problems so I just tell them to go away and I will deal with it.

Mike
Title: Re: Girl w/weird doc likes this place, shadows?
Post by LeLimey on Jan 25th, 2008, 12:27pm
Well I'm another Helen with CH and if you look around there are a hell of a lot of females here like us who wish wholeheartedly that women (and children) DIDN'T get CH!!

Hang in there, fighting ignorance is a lot harder than fighting "the beast"
Title: Re: Girl w/weird doc likes this place, shadows?
Post by brewcrew on Jan 25th, 2008, 1:17pm

on 01/25/08 at 12:20:45, Ghost wrote:
tell them to put on their big boy and big girl panties and get over it. CH is forever! so far. there is no cure and you are the one hurting. They need to support you or stfu and stay out of the way!

Not any better way to say that.

Mike,

With all due respect, I can think of at least a hundred better ways to say it. The last thing I want to do is alienate the people who mean the most to me, especially at this critical time of discovery when what you say and do can tip the scales in any relationship.
Title: Re: Girl w/weird doc likes this place, shadows?
Post by imfareware on Jan 25th, 2008, 2:13pm
At the begining and end of my CH cycle I get shadows, O2 helps extremely and melatonin at night.  This site also saved me this time!!

hang in there, your not alone!
Title: Re: Girl w/weird doc likes this place, shadows?
Post by fiddlehead on Jan 25th, 2008, 2:23pm
It's all good.... ;;D  Thank you for all the kinds of support.

I have definitely moved beyond caring if the doc agrees or not....I want to take charge of my HA's and use my good PF time to prepare for the next CH.  I've got 3 kids (7,5 and 3) and I just won't waste any more time spinning my wheels.  "Can't/won't help?  Move aside.."  I've got bigger battles (beast) and gotta figure out ways to call people in at the last sec to help with my kids.  

My shadows are cruel...more headaches or not?!  Just come already and get it over with.   That's why everybody hates shadows, I know.

Helen2
Title: Re: Girl w/weird doc likes this place, shadows?
Post by LeLimey on Jan 25th, 2008, 2:35pm

I have three kids too and I'm now a single mum. It can be done, it isn't easy though.

First of all explain to them that mummy might make a lot of noise and look scary but you just need to take some special meds or use a magic masx (o2) and you'll be fine. Underplay it to them, I do!

Then have stuff they do while you're getting hit. Special toys or colouring books or whatever and practice your coping regime. Train them into it as you would with telling them what to do in the event of a fire.

Kids can cope with anything if we just explain it to them, you know your kids best and you know yourself the right way to do it.

Sometimes OTC meds will help with shadows but be careful not to use them so much you get headaches from them! Caffeine in coffee or energy drinks helps me with shadows too and I agree - sometimes they get you to the point where you think "Just hit me and get it over with!"

You know you'll have support here come what may!

Helen xxx
Title: Re: Girl w/weird doc likes this place, shadows?
Post by Ghost on Jan 25th, 2008, 4:49pm

on 01/25/08 at 13:17:04, brewcrew wrote:
Mike,

With all due respect, I can think of at least a hundred better ways to say it. The last thing I want to do is alienate the people who mean the most to me, especially at this critical time of discovery when what you say and do can tip the scales in any relationship.

Brew
You are correct sir and I stand corrected. I just get so fed up when people (spouse, parents siblings.) who should be able to be counted on when needed blow you off by telling you things like it aint that bad, or (insert what you have heard) You are correct do not ailienate (sp) those you need. The beast is unforgiving and you will need all the help you can get.

Mike
Title: Re: Girl w/weird doc likes this place, shadows?
Post by brewcrew on Jan 25th, 2008, 4:55pm

on 01/25/08 at 16:49:21, Ghost wrote:
Brew
You are correct sir and I stand corrected. I just get so fed up when people (spouse, parents siblings.) who should be able to be counted on when needed blow you off by telling you things like it aint that bad, or (insert what you have heard) You are correct do not ailienate (sp) those you need. The beast is unforgiving and you will need all the help you can get.

Mike

And YOU are correct, sir. What you describe is not support. It's the opposite, if there's a word for that.
Title: Re: Girl w/weird doc likes this place, shadows?
Post by Callico on Jan 25th, 2008, 5:23pm
We are getting positively medieval here!  Sir Brew and Sir Goat!!! ;;D  You are both right.  Mike, you are right in telling them they need to support or get out of the way, but I do try to be a little more diplomatic about it.  "Diplomacy is the art of letting someone else have your way."  I would attribute that, but don't remember who it was that said it.

Helen, I agree that sometimes the shadows seem worse than the hits.  I liken them to the bully between you and school that you know is just waiting to pound your head into the sidewalk again just as soon as you turn the corner.  You know he is there, but can't do anything about it.  And yes, I often will get a shadow that lingers for some time after a hit, particularly if it is one that I have aborted rather than riding out to its conclusion.

Hang in there.  You are learning the most important lesson of all, that YOU have to take control of your own destiny.  Keep learning and find a Dr that will work WITH you and develope a treatment regimen that you can work with.

Jerry
Title: Re: Girl w/weird doc likes this place, shadows?
Post by Lebowski on Jan 25th, 2008, 6:22pm

on 01/25/08 at 09:18:54, fiddlehead wrote:
Yes, it is hard for me to know what the heck is going on.  I've had 3 very different types of headaches in the last 2 weeks.  Most of them were under an hour.  The 12 hour one I 'self diagnosed' as a rebound.  It didn't respond to anything...and then when I finally got some oxygen it got better, but was it already getting better?

I think my husband and family are sick of hearing about the headaches now, as I'm on this site 24 hours a day finding out new things that I can do.  And using scientific terms, such as 'The Beast' and 'Shadows'. (Hearing flying monkey music from Wizard of Oz)

Found the name of a new neuro....also going to a medical library to find some 'evidence' about female CH to throw in the face of adversity (aka the 'weird doc') before I fire her.

Thanks for the support, again, I feel totally different about my situation.  Also, HAfree for 18 hours....small miracles. [smiley=sleep.gif]

Helen


Sorry to hear about your lack of support from your family. This can be very stressful.  Have you thought about printing out this letter for them to read?:

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Hope this helps.
Title: Re: Girl w/weird doc likes this place, shadows?
Post by fiddlehead on Jan 25th, 2008, 9:37pm
Hi again.....thanks for that letter.  I read thru it and will print it out.

I mis-represented my family earlier.  They haven't said anything to make me think that they're tired of this.  If you could only see me dragging my laptop around with me everywhere reading any and every possible fact about these CH's (probably like all of you did in the beginning), it's probably a bit comical.   I have to take a step back and understand it from their point of view, that's all I meant by that.  Mommy not only has a scary headache, but the computer is going to suck her in when it's over!  I've actually felt so much compassion from my husband and my kids.

HA free still, thought it was going to blow a while ago but it didn't.  

Also read that medical info (over there to the left) and don't see a need to go to a medical library.  That is very good indeed.

My mom drove 9 hours today to come help me out.  That's support...I'm lucky. [smiley=headbanger.gif]
Title: Re: Girl w/weird doc likes this place, shadows?
Post by GrandPotentate on Jan 25th, 2008, 10:20pm
You might want to let loose your pc for a  bit, and let your spouse browse a while on the "supporters" page.  There's no way my family members will ever really understand the degree of pain (oh my gosh it hurts so bad make it stop....), an in general I'd rather they just give me a little space to deal with a hit on my own.

I've been on the other side of the situation, too.  I've had family and friends who have had other "things".  Worse "things".  (Yeah, my "thing" hurts, but then it goes away for awhile and I feel pretty good in between, and it won't really kill me)  It is a little scary for me to deal with a loved one who has something I don't understand, and have not personally experienced.  I try, but am probably not a great supporter.  

I hope no one else in your family will ever experience what you are going through!  Be very glad that they don't understand.  That's why you've got all the oddball folks here.  

But do make the best of the PF times and give 'em all a hug!  It is pretty easy to make up for the time you lose to this thing.  It sounds like you have a lot of love for them.



Jon


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