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MinxKittten
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Some Curiosity Questions
« on: Apr 7th, 2008, 12:52am »
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hi,  my husband is a cluster headache suffer,  he posts on here,  he has suffered for 20 years.  we have been married for almost 4 years.  his cycle this year is the longest i've ever seen him have,  i think we're at about nine months and the severity of the attacks is WAY WORSE than i've ever seen.  usually the headaches are 3-6 range,  this last few weeks they've been off the charts at 10-12's.  he takes varapimil every day and shrooms sometimes and uses sinus buster spray, and imitrix very seldom,  but nothing seems to be working this year.  i've been trying to talk him into oxygen,  we're going to the doctor on tuesday.
 
the hardest part for me is the HELPLESSNESS and seeing him suffer.  secondary to that is that our whole social life changes as he doesn't want to go out or socialize when he's in cycle.  i do go out sometimes, but i feel guilty, out having fun while he's home suffering.
 
as i've been doing some extra research this year i came up with some questions i was wondering if any of you have see similar things in other sufferers.
 
1. i read that it is common for cluster headache sufferers to have a prominent chin and leathery or ruddy complextion.  my huband has this,  do you see this in the people you know?
 
2. my guy is "hot blooded" usually warmer than me, sweats easily, gets red and hot easily.  any of you seen this in your cluster mate?
 
3.  i read that clusters are believed to be associated with circadian rythms (the sleep wake cycle) and the hypothalymus.  my hubby has slept with the TV on his whole life which i believe has affected his sleep wake cycle,  any of your guys have this habbit?
 
4.  of course like most of the people on here,  he has a headache as soon as he tries to go to sleep,  but also after eating, so he usually just eats one big meal per day and then has one or several headaches after that.
he says it doesn't really matter what he eats, its gonna happen.  of course he avoids the normal triggers like alcohol, wine, chocolate, sweets, msg, etc.  but my observation is that when he eats salad with vinagar based dressing and mexican food where he eats tons of salsa that the severity of his headaches is MUCH WORSE.  have any of you observed these as triggers,  and is there any listing anywhere of food triggers to avoid for clusters?  while i know its digestion in general related,  i do believe that somehow some foods are better for him than others, would like help on this.
 
5.  has anyone heard anything abou the acai berry and anti-oxidents for clusters?
 
6. have your sufferers been tested for magnesium difficiency?  i read that it is common in sufferers.  i got him to take magnesium a couple of years ago, but he's not interested any more even tho that year the cycle was less severe.
 
7. i'm confused on calcium.  i believe verapimil is a calcium blocker, but i read on here some people take calcium.  
 
8. is melatonin really helpful?  he also did that for a while and stopped.  
 
9. i thought i read somewhere that red bull helps because of the taurine,  he won't drink red bull, but a friend told me that there is oral taurine available like at vitamin shops, anyone tried this?
 
10.  how do i help him get past the "nothing will work" attitude and saying " i just have to get through it."  i feel like there is always advances and new information and new things to try, even tho they may only work for a few,  if there's a chance why not try.  
 
i'm sorry for all my questions,  i'm just so desparate to try to help in any way i can.  its so hard to see him suffering so much.  when he apologizes for what i have to go through,  i tell him my little sufferning is NOTHING compared with what HE has to go through with the pain and all.  i'm not trying to make this about me,  i only want to help him and others by learning all we can.
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Re: Some Curiosity Questions
« Reply #1 on: Apr 7th, 2008, 5:22am »
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on Apr 7th, 2008, 12:52am, MinxKittten wrote:
welcome -- here's a few short answers
 
1. i read that it is common for cluster headache sufferers to have a prominent chin and leathery or ruddy complextion.  my huband has this,  do you see this in the people you know? No, that's BS.
 
2. my guy is "hot blooded" usually warmer than me, sweats easily, gets red and hot easily.  any of you seen this in your cluster mate? Yes, the hypothalamus regulates the human thermodynamic system. Heat and exercise is trigger for some (and amazingly it can also end a hit for others)
 
3.  i read that clusters are believed to be associated with circadian rythms (the sleep wake cycle) and the hypothalymus.  my hubby has slept with the TV on his whole life which i believe has affected his sleep wake cycle,  any of your guys have this habbit? It could, but I doubt it
 
4.  of course like most of the people on here,  he has a headache as soon as he tries to go to sleep,  but also after eating, so he usually just eats one big meal per day and then has one or several headaches after that.
he says it doesn't really matter what he eats, its gonna happen.  of course he avoids the normal triggers like alcohol, wine, chocolate, sweets, msg, etc.  but my observation is that when he eats salad with vinagar based dressing and mexican food where he eats tons of salsa that the severity of his headaches is MUCH WORSE.  have any of you observed these as triggers,  and is there any listing anywhere of food triggers to avoid for clusters?  while i know its digestion in general related,  i do believe that somehow some foods are better for him than others, would like help on this.
could be.
5.  has anyone heard anything abou the acai berry and anti-oxidents for clusters?
That's B.S.
 
6. have your sufferers been tested for magnesium difficiency?  i read that it is common in sufferers.  i got him to take magnesium a couple of years ago, but he's not interested any more even tho that year the cycle was less severe.
That's arguable
 
7. i'm confused on calcium.  i believe verapimil is a calcium blocker, but i read on here some people take calcium.  
That's arguable
 
8. is melatonin really helpful?  he also did that for a while and stopped.  
It helps many
 
9. i thought i read somewhere that red bull helps because of the taurine,  he won't drink red bull, but a friend told me that there is oral taurine available like at vitamin shops, anyone tried this?
Helps many
 
10.  how do i help him get past the "nothing will work" attitude and saying " i just have to get through it."  i feel like there is always advances and new information and new things to try, even tho they may only work for a few,  if there's a chance why not try.  
 
Get him some oxygen --  
 
\ keep on supporting him!.

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Re: Some Curiosity Questions
« Reply #2 on: Apr 7th, 2008, 11:01am »
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WOW! A well thought out list of questions, first off thanks for being a supporter. My wife has stuck by me through 28 years of these things and is my strongest supporter!
 
The old ruddy faced, lion-ish look....that's old school myth.
 
I've always had trouble regulating my body temp, get hot OR cold very easily, my wife says I have an incredible narrow comfort range!
 
I don't sleep with the TV on.
 
I have certain triggers when on cycle, alcohol, sleep deprivation, extended stress. But the act of eating a meal has never caused a headache to start.
 
The anti oxidant thing...haven't seen that stuff work for anybody!
 
I have been on a magnesium supplement for many years and am convinced it has reduced the severity and the frequency of my attacks. If you take magnesium you're supposed to take calcium also as the magnesium leeches the calcium out of you. Several people have posted they believe magnesium has helped.  
 
Melatonin helps many avoid the night time hits.
 
As I understand it, the taurine speeds the absorption of caffeine, that's why the energy drinks work better then straight coffee.
 
The "I'm gonna gut check through it"...that's us men being stubborn asses. I don't know how you overcome that. Undecided
 
Keep pushing him on the oxygen. Best thing that ever happened to me. I can knock em out in less then 10 minutes using the 02.
 
Thanks again for being a supporter, I know we can be stubborn asses but we truly do appreciate you!
 
Guiseppi
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Re: Some Curiosity Questions
« Reply #3 on: Apr 7th, 2008, 12:27pm »
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  Just wanted to add a little something aobut one of your questions...
 
I cannot stand the taste of Red Bull either.  Get him a few cans of "Rock Star"  instead.  I really like the taste of them so much better and it is a better value for the money.  I like the Pomegranate flavor the best.   The energy drinks are such a convenient way to help abort a hit, especially if you slug one down at the very first hint of a CH coming on.    Opening the can and putting it in the refrigerator before-hand makes it a lot easier to gulp down because a lot of the carbonation is dissipated by the time he needs it.
 
    Your husband is a very lucky man to have you on his side and in his corner.  
 
Linda
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Re: Some Curiosity Questions
« Reply #4 on: Apr 7th, 2008, 2:48pm »
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Hi MinxKitten.....just wanted to say hello and welcome.
 
You're really doing a fine job supporting.    Smiley  
 
My hubby is a CHer.....yes, the helpless feeling sucks!!!
 
We're always around if you need us...
 
Good Luck,
 
Jackie
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Re: Some Curiosity Questions
« Reply #5 on: Apr 7th, 2008, 3:30pm »
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Hiya - another supporter chiming in  . . . .supporter for 16+, married for 25.
 
My DH (the clusterhead in our family) happens to be ruddy and sweaty, and yet I'm still here . . .LOL (probably because I'm ruddy and sweaty too! - If we weren't ruddy we'd be so pale you'd lose us in sunlight!)  Prednisone makes him VERY red (and crabby).
 
My DH just started taking melatonin and it seems to have eliminated the night time hits. I'm menopausal and thought I'd try it for the insomnia menopause brings, but all it did was make me dizzy and nauseated.
 
How much verapamil is he taking?  Talk to his doctor about upping the dose if possible.  It worked for DH but the higher dose caused heart palpitations and other nasty side effects so he tapered off it after his last cycle.
 
Has he tried Lithium?  It works well for some (my DH included) and in those lucky ones, has few side effects and many benefits.
 
O2 is a lifesaver, I believe.  O2 works so very well as an abortive if used correctly and quickly.  I know Guiseppi and my DH (brewcrew) are the lucky poster-boys for its use.
 
DH buys "generic" Red Bull called Red Thunder at Aldi - very cheap and tastes different.  He also like NOS - I can't stomach any of them.
 
Don't worry about coming here asking for help.  Most of us have been where you are and we've persevered.  We've stood on the porch or the deck sobbing because we can't take the pain away.  We've taken the kids away so daddy can fight alone.  We've spent hours on the internet or on the phone trying to get answers or help or convince family members what this really is.
 
We're here for you  - someone will always answer you.
 
Keep up the good fight.
Pat
 
 
 
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Re: Some Curiosity Questions
« Reply #6 on: Apr 7th, 2008, 3:38pm »
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He posts as who pray tell?
 
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Re: Some Curiosity Questions
« Reply #7 on: Apr 8th, 2008, 12:17am »
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thank you so much everyone for your heart felt answers.  we're off to the neuro guy tomorrow,  hopefully we can get the oxygen thing done!  i'm gonna print some stuff from another post on here to make sure we get the right stuff.
 
i think i'm gonna try to get him also to try the melatonin again and the red bull or energy drinks.  
 
TRY is the operative word....
 
as for the last question,  i believe he posts as HockeyRef or something like that.  i don't think he's been on here for a bit as he's been in cycle hell and hes also into a new hobby of fish tanks so he's been on the FISH forums alot.  
 
thanks for everything,  i'll keep you updated if anything gets better.  
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Re: Some Curiosity Questions
« Reply #8 on: Apr 10th, 2008, 12:04am »
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Hi All,
 
we went to the doc on tuesday,
 
he added Topamax to his daily verapimil,  doc wanted him to up the verapimil to 480 but he didn't want to.
 
we got the scrip for oxygen,  had it delivered late last nite.  found a respitory therapy supply company that was VERY AFFORDABLE,  2 canisters and 2 masks for $50 total!!!
 
doc said 7L/min for 10 min at onset,  does that sound right?
 
also we got 2 masks,  one says medium concentration mask and one says high concentration mask with a little bag hanging on the bottom,  which one should he use???
 
i asked about  the bubbler thingy some of you refer to and the O2 company said that only comes with the big concentrator tank thing.  
 
he wants to try the smaller tanks to see how it works for him first.
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Re: Some Curiosity Questions
« Reply #9 on: Apr 10th, 2008, 8:14pm »
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G'day Minx, and just over the left side of your screen (above OUCH website) is a button marked "Oxygen info".  Click on that and there's a whole bunch of stuff about how to use it for best effect.
 
Also, here's a link to a site put together by Mad Barry of the Outback along with his parole officer, Mr Happy.
 
http://mushys.com/kiwi  
 
Although it's about the Aussie gear the principle's pretty much the same.  Only thing to remember is to cut off the head-strap before you start and avoid smoking at half time.
 
Otherwise, just keep asking questions.  That's why we're here.
 
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Re: Some Curiosity Questions
« Reply #10 on: Apr 10th, 2008, 8:43pm »
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Minx, I see that you are in Long Beach, Ca.  I grew up in Burbank until I moved further North a few years back.
 
  If your husband needs or wants a bubbler let me know and I will send one to you.  I have a box of them.
 
Linda
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Re: Some Curiosity Questions
« Reply #11 on: Apr 10th, 2008, 11:55pm »
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THAT'S TOO LOW OF A FLOW!!!!!!!!!!!!
 
The only way oxygen works, is if his lungs get 100% pure oxygen. That generally requires a higher flow rate, 15 lpm or better using  a NON RE BREATHER MASK. That means he cannot re breathe any of the air he exhales and he cannot breathe any outside air. Read that oxygen link on the left. It'll show you hot to get the oxygen done right. Your doc means well, but he is WRONG WRONG WRONG  on this.
 
All said with love and compassion for your hubby.
 
Guiseppi
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Re: Some Curiosity Questions
« Reply #12 on: Apr 11th, 2008, 2:18am »
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on Apr 10th, 2008, 11:55pm, Guiseppi wrote:
THAT'S TOO LOW OF A FLOW!!!!!!!!!!!!
 
The only way oxygen works, is if his lungs get 100% pure oxygen. That generally requires a higher flow rate, 15 lpm or better using  a NON RE BREATHER MASK. That means he cannot re breathe any of the air he exhales and he cannot breathe any outside air. Read that oxygen link on the left. It'll show you hot to get the oxygen done right. Your doc means well, but he is WRONG WRONG WRONG  on this.
 
All said with love and compassion for your hubby.
 
Guiseppi

 
 
thank you so much everyone.  i read the oxygen link and i know what we need to try next,  we've got the right tank and mask,  just need to increase the flow and add the bubbler.  and i need to confirm he knows to air out before going out to smoke.   he doesn't smoke much in the evenings anyways once the headaches start.
 
thanks again.
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Re: Some Curiosity Questions
« Reply #13 on: Apr 11th, 2008, 2:19am »
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on Apr 10th, 2008, 8:43pm, Linda_Howell wrote:

Minx, I see that you are in Long Beach, Ca.  I grew up in Burbank until I moved further North a few years back.
 
  If your husband needs or wants a bubbler let me know and I will send one to you.  I have a box of them.
 
Linda

 
that would be GREAT thank you!!  i'll PM you my address and let me know how much we owe you,  i can paypal if you have a pay pal acct.
 
thank you!!!
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Re: Some Curiosity Questions
« Reply #14 on: Apr 12th, 2008, 11:15am »
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Hi Minx, I am a supporter too (Guiseppi's primarily) and agree that 02 is the best thing that happened to him (us). When he's on cycle his tank goes everywhere with us. He keeps in the trunk of the car. And like Pat said, we've learned when to walk away, take the kids out, etc. But like you said, I also spend a ton of time researching (thats how we found this site). The network of people and information here is the best.
 
Best of luck to you and your ch'r.
 
Christy
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Re: Some Curiosity Questions
« Reply #15 on: Apr 13th, 2008, 12:24am »
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Awe, thanks for the words of support Christy.  you got a great guy there.  i always see him trying to help everyone on here.  
 
i can't see him taking the O2 with us as we usually don't go out much when he's in cycle,  versus a very active social life when he's not in cycle.  
 
he/we try to get our stuff done in the AM, then when he has lunch,  the headaches start.  so several in the afternoon and evening and sometimes some at nite when he tries to go to sleep.
 
he would rather be home and deal with it than out,  which i can understand.
 
we have a nice relaxing house,  lots of fish tanks and koi pond,  two big fat kitties,  a chihuahua and a brand new puppy, teacup yorkie.
 
question for you,  any family history in your hubbys family?  my hubbys dad had CH for years and they suddenly went away when he turned 50.  he has passed, so we can't ask him much,  but i was curious if most sufferers had family history.
 
thanks for your support
jacqueline
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Re: Some Curiosity Questions
« Reply #16 on: Apr 13th, 2008, 9:07am »
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If you guys don't go out when in cycle you surely should do so on your own.....get one of his buddies to give him a quick kick in the tushie as it should be pointed out that he will have an attack regardless if at home or at a party or restaurant.
 
Why stop living?!?
 
My wife and best friend gave me the mental push to live again 3 1/2 yrs ago....I've been in this current cycle for almost 4 yrs....It doesn't stop me nor does it stop many.
 
Sure once in a while we break down but we still have to suck it up (an O2) and move about our days.
 
Go have a cocktail and enjoy a break.
 
Hugs to you and the fine ladies here Kiss
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Re: Some Curiosity Questions
« Reply #17 on: Apr 13th, 2008, 11:04pm »
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There seems to be only a small percentage of us with any family history. There are a few with kids who have CH, but it seems to be pretty rare. There were some stats posted last year, if someone in you family has it the odds are a teeny bit higher that you'll get it, but still a very small chance. I'm one of 14 children, and the only one with CH!
 
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Re: Some Curiosity Questions
« Reply #18 on: Apr 13th, 2008, 11:04pm »
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We never knew anyone that had CH prior to Joe. In a discussion wtih his oldest brother once, he described Joe's headaches to a T,  including the sinus stuff. But his was in his younger years, and short lived. We realized Joe had a problem in his early 20's, but didn't really "get it" until he was about 30 or so. At least as far as I recall.
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Re: Some Curiosity Questions
« Reply #19 on: Apr 16th, 2008, 7:52pm »
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Jacqueline,
OK, I'm chiming in about Verapamil.......480 is not a bad dose..if your hubby's bordering on tall.....I know a 6'er, average weight, verap did it for him for a good long time....and that was, as I remember, the dosage. Not enough will do nothing, and would be a waste of money.
 
E-double had some good advice. PLEASE don't let the beast rule your life. LIFE is what you LIVE......CH is what interrupts that life! It's a nasty affliction, but when it takes everything else from you.well, that's when the beast wins.......remember, life is PRIMARY.........CH is the interference!
Also, Jacqueline, please, be good to you, as well. Let your husband deal. Once you've gotten him what he needs to cope, there isn't much you can do......this is NOT, hopefully, coming off as callous.....it's certainly not meant that way, but you have to keep up your energy and your attitude, or CH will suck you dry as well- PLEASE don't let that happen!
We're all here a lot, so anything that comes up, feel free to ask.......let us know how you're doing.......oh, and here's a hug............
Take care,
Cathi(a supporter)
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Re: Some Curiosity Questions
« Reply #20 on: Apr 16th, 2008, 9:46pm »
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on Apr 16th, 2008, 7:52pm, Cathi_Pierce wrote:
Jacqueline,
OK, I'm chiming in about Verapamil.......480 is not a bad dose..if your hubby's bordering on tall.....I know a 6'er, average weight, verap did it for him for a good long time....and that was, as I remember, the dosage. Not enough will do nothing, and would be a waste of money.
 
E-double had some good advice. PLEASE don't let the beast rule your life. LIFE is what you LIVE......CH is what interrupts that life! It's a nasty affliction, but when it takes everything else from you.well, that's when the beast wins.......remember, life is PRIMARY.........CH is the interference!
Also, Jacqueline, please, be good to you, as well. Let your husband deal. Once you've gotten him what he needs to cope, there isn't much you can do......this is NOT, hopefully, coming off as callous.....it's certainly not meant that way, but you have to keep up your energy and your attitude, or CH will suck you dry as well- PLEASE don't let that happen!
We're all here a lot, so anything that comes up, feel free to ask.......let us know how you're doing.......oh, and here's a hug............
Take care,
Cathi(a supporter)  

 
 
thank you Chathi,  for your kind words.  its hard to not feel guilty for going off and having a good time, when i know he's home struggling.  
 
some days are harder than others for both of us. some days are not so bad.  
 
we're both fighting depression.  
 
but some days we're hopeful.  
 
we'll keep at it. Kiss
 
thanks for the support Kiss Kiss
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Re: Some Curiosity Questions
« Reply #21 on: Apr 16th, 2008, 9:58pm »
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Quote:
its hard to not feel guilty for going off and having a good time, when i know he's home struggling.    
 

 
While I understand what you're saying...being a sufferer sometimes makes me feel really guilty for what I put others in my life through.  I want to be alone
 
Telling your husband you're going out for a little while just might make him feel relieved that he isn't ruining your life.  Think about it.
 
    The package we talked about is on the way and I included a little something in it for you as well, as a reminder to take care of yourself.   Wink
 
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Re: Some Curiosity Questions
« Reply #22 on: Apr 16th, 2008, 10:05pm »
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on Apr 16th, 2008, 9:46pm, MinxKittten wrote:
its hard to not feel guilty for going off and having a good time, when i know he's home struggling.

Force yourself. One of you needs to have their wits about them, and since DH is being stubborn about doing things to improve his situation, it might as well be you.
 
How good of a supporter can you be if you get sucked into that downward spiral? Go out, feel human again, laugh, kick up your heels a little. Otherwise you'll soon be no help to him at all. He needs to understand this.
 
As I often tell my son, if you want to BE a professional, you need to act the part first. Dress like a pro, talk like a pro, think like a pro. Pretty soon you'll be one. Same goes for you. If you want to BE a good supporter, you need to act the part (which you're doing quite well, I might add). Go out with your friends once in awhile and reconnect with what it means to be human.
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Re: Some Curiosity Questions
« Reply #23 on: Apr 16th, 2008, 11:45pm »
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Hi Minx
 
I am a supporter for my husband who has CH. He is out of cycle now thank God but when he was in cycle, life halted to an almost complete stop because we were focussing too much on CH itself.  
 
We got the encouragement here from our good friends to push on living life as normal as possible. Viewing CH hits as a form of hiccups. You dont stop eating just because you get hiccups right ? You keep eating as normal, when the hiccups come, you drink water or do whatever it is you do to make it go away then you resume eating again, after offering a polite apology to the people around you. Sometimes a bad bout of hiccups might make you lose your appetite but at least you would have already eaten something!
 
Whenever I felt I started to run out of steam, I concentrated on doing whatever it took to recharge myself. I did feel guilty at times about going out and leaving my husband during the cycle, but I tried to look at it as the emergency procedure advised on airplanes : in case of possible crashes, put the oxygen mask on your face first before you will be able to help someone else.  
 
It just takes a bit of practice  Smiley
 
Hugs and painfree wishes to you both.
 
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Re: Some Curiosity Questions
« Reply #24 on: Apr 22nd, 2008, 8:44pm »
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Jaqueline, Rick is very licky you're there, but, please consdier this:  
If you run out of steam, either physically or emotionally, well, what then?
Keeping your energy up means being available for Rick, as well as doing your best to keep his spirits up.
 
Your last statement, that both of you are depressed tells me you need to recharge, girl!
 
Be good to you, I know you're good to him,  and, above all, please, please remember that CH is a horrible inconvenience that interrupts lives...........don't let it define you. It will go away, finally, and I want you to enjoy that wonderful, PF time.
 
Cathi      
 
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