Does anyone else tend to want to hide out at home during a cycle?  I have to go to work, so that's not an option, but I just feel no one can understand (except here)...  how do you say "I have h/a's so bad that I want to kill myself, so I'll pass on the beer"....  how many times have you heard "OH I GET H/A's TOO"! 

I don't want to talk about them, afraid anywhere I go I'll get a h/a with my worst fear of not getting to my relief quick enough (grocery store, hair appt).

There is NO way anyone outside of the cluster world can understand...  so I just don't want to deal with the outside world during a cycle

Yes, and since I went chronic a few years ago it didn't change.  I still don't go out much except where I feel safe and for work.  Since I'm in sales that can be very difficult, especially on bad days.  It is hard to project confidence in your product when you aren't confident in your self.

JC

Actually, yes.

I've always withdrawn during a cycle.  Everything is focused on getting through the thing and getting on with what I need to do.  No room for anything else.

Best,

George

I try my best not to let it have that effect on me.

I'm a semi-extroverted introvert anyway, so it doesn't take much to make me more introverted when the beast is doing his worst. There is also a big difference as to if I'm out by myself or if I'm with my partner who understands perfectly what I go through, how I react to things, etc.

However when he is away, if anything it has made me more wanting to do things, so yes, there can be a silver lining. It's part of trying to make the best out of things when I can do things.

I tend to be out and about with my friends or wife practically every day.
Now that I am in cycle that has been cut in half.  Would not say 'introvert'... more a 'it is not worth the hassle of dealing with a hit away from home'. 
I have been turning down practically every opportunity to head to neighboring towns to do something... gotta stay within 5 min of the house.

My circle of friends are pretty supportive.  They know what I have and accommodate it.

After 30 yrs of these things, I unfortunately have been in some very bad situations whereas I've had the beast pop up...  I just tend to stay close to home and not with ppl that do not know of my h/a (only a handful know),.... I guess it would be to hard to explain why I have to make a quick exit from the beach in the middle of the day : (

You're right, it's not worth the hassel.. but it's a beautiful sunny day and I'm afraid to go boating, to the beach, out of town...  stinks!

I suppose I snuck away from people when getting hit. I was more of an introvert back then in any event.

I was lucky though that the people I was with a lot of the time were RNs. My friend who drove us to the big flea markets and shows we worked was too and knew exactly how to behave. Dave let me be and never made suggestions or asked me how I was. A real break!

I was happy to be alone though when getting hit 5 or 6 times a day.

Charlie

Maybe 'introvert' isn't the right word to use..  Just tend to stay close to home and know where the closest ER is : (   of course heat is a big trigger for me too, so that sucks..  how horrible to be boating with someone that doesn't know you have these things?  I meet a lot of new ppl and it's just such a pita to explain to everyperson these demons

Thinking further on this, I have also made a firm commitment that CH doesn't define me. Since having them I've done travelled extensively in NZ, over to Oz and in a few hours I'll be heading over to the UK.

Yes, I might get some CHs, but I do do other stuff too. The beast does not control my life, I do.

Now time to get back to packing as I need to be at the airport in a few hours for the first of three flights, first stop in LA, then London before arriving in Manchester after about 30 hours of travelling (I wish the world was a bit smaller).

I have always weighted going out vs chances of getting a headache.It sucks.Many times I have passed on some activity or another for fear of a h/a hitting.Ive gotten so used to it,its become second nature.75% of the time I decline leaving home.When I do go out I am very aware of how long I stay out.Recent meds do have me optimistic.

Me too.
Just cancelled and lost money on a trip to Puerto Rico with friends for fear I'll still be in cycle two weeks from now. I can't imagine anything more nightmarish than having these away from my ice packs, oxygen, etc....

I'm sitting here quietly and alone because I need to sit quietly and alone.

The oxygen is for my asthma. Please move away as I need the fresh air.

The injection is legal and prescribed. It stops me from killing people.

Sorry I missed dinner. An old mate turned up and simply wouldn't leave.

Of course I'm pacing. I need the excercise.

The howling is part of our sex-life. I apologise for the disturbance.

Sorry neighbour. I'll make sure you're out before I bang in more nails.

I can't take your call just now. I'm with an old colleague on another line.

Well said Brian.  I like your signature line too.

Jerry

I have had to miss some events that I have been going to for years.  The heat is an instant trigger, so much of my summer activities are changing.  When I see it's going to be in the 90's, I know I'll be staying inside until sunset, and that takes some getting used to.

Being close to home is a comfort during a cycle, but I'm trying to live my life as much as I can, and not let this rule me.

Being close to home is a comfort during a cycle, but I'm trying to live my life as much as I can, and not let this rule me.

That's the attitude, it's called living your life between the hits, enjoy your pain free time, ALWAYS be ready to do battle with beasty! ;)

Joe

Wendy1 wrote on Jul 29^th, 2011 at 9:04pm:

Does anyone else tend to want to hide out at home during a cycle?  I have to go to work, so that's not an option, but I just feel no one can understand (except here)...  how do you say "I have h/a's so bad that I want to kill myself, so I'll pass on the beer"....  how many times have you heard "OH I GET H/A's TOO"!  I don't want to talk about them, afraid anywhere I go I'll get a h/a with my worst fear of not getting to my relief quick enough (grocery store, hair appt). There is NO way anyone outside of the cluster world can understand...  so I just don't want to deal with the outside world during a cycle

thats perfectly normal wendy. im terrified to get too far away from my o2.

Very well said Brian...  :(     Beli.. yes, so sad to know when temps are up and sun is out during cycle.. I will most likely be inside.. I just can't risk the beast, sadly.

i was supposed to pick my 7 year old daughter up yesterday morning at 12 ,to take her out somewhere nice for the day , at about half 11 i got the dreaded tingling behind my eye and knew that was it , i had to ring her  up and tell her i couldnt pick her up , how do you explain to a severn year old  :(  i feel so sad at letting her down .

Doesnt  change a thing. I deal with it and move alOng whether I'm home or out. The only time I let it get in the way was when this cycle starts in 2004. Once in a while i seek out a little more support but overall I'm way too much of an obnoxious schmoozer to shut down

E-Double wrote on Aug 9^th, 2011 at 11:06pm:

Doesnt  change a thing. I deal with it and move alOng whether I'm home or out. The only time I let it get in the way was when this cycle starts in 2004. Once in a while i seek out a little more support but overall I'm way too much of an obnoxious schmoozer lovable, kind, caring, funny person to shut down

There, fixed that for you.

Hi Wendy. Yes, myself and probably most Clusterheads do hide out during cycle. I spent years hiding. Fortunately after about 15 years of complete chaos, I found Imitrex shots. I  was still a little hesitant to go out, but it definitely changed my world from that point on.

All I can say is you have to try to not hide so much, but instead (take with you) all the ammo you can that works the best and still get out as much as possible. I know it's easy to say, but try not to let the Beast take over.

Hope your cycle ends soon.

Missed my 20 year reunion a few weeks ago out of fear.  :-[

Missed my 25 year reunion because I couldn't stand 98% of those people when I went to school with them 25 years ago. ;D

Hi Wendy, this past week i've been hit 3x and believe i'm headed into my 1st cycle since 2005.  I'm a single parent and fortunately my 11 yr old is out of town visiting my mom, coincidentally to you-in MI, so at least I can take advantage of time to myself evenings/this weekend.  Beside working Mon-Fri 8am to 5pm....I have chosen to be at home!   8-)

This morning I emailed my girlfriend and wrote to her that I don't think I will be available tonight as planned to go to dinner/movie, and probably have to cancel plans for tomorrow afternoon swim/tan at a casino hotel pool, nor will I probably see her very much over the next 3 months as that is the length of time I anticipate my cycle will last....her email reply was "You like being alone and miserable and pushing away everyone."    :(

Of course nobody truly understands unless they also suffer CH's or have witnessed an attack, which my GF has never watched the horror as we've only been dating 4 years and my last cycle was 6 yrs ago.  I feel as if I may be potentially throwing away my relationship by letting her know I don't want to see her for 3 months, but don't want her to see me getting attacked which would make her feel worried, sad, etc.  I reluctantly write that because I love her so much I would rather not have her suffer with me and suggest she move on with her normal life  :-/

I don't care for the 110 degree desert heat and don't care to battle the traffic and don't care to be stuck in the heat and traffic while possibly getting attacked, so my solution is stay at home and try to be as productive as possible.  8-)

I am a Type A personality...extremely extroverted, outgoing, sociable and you guessed it; professional salesman...but my personality does a 180 opposite while in cycle.  Kinda like a crab or turtle that crawls into his shell when the beast hits, otherwise always out n about exploring the wonderful scenery.  :)

You are not alone and we are here for your support  :)

...and for some...like me..... it's a personality...before....during...and inbetween ch

....and it reminds me so of ch...it JUST....PISSES....SOME...PEOPLE....OFF

....it's not understood...most often MIS-understood

I don't apologize for my personality...just like I don't apologize for ch....just regretting the perception....ya deal with what ya got.....

Best,

Jon

Jon, you are nothing like your post!  I've found you to be a kind, caring, compassionate, loving person, whether in cycle or out.  I've tried to copy some aspects of your personality in my struggle to deal with this beast.

BTW, it is long past time for an update!  How in the heck are you anyway?  And DON'T softsoap it!

Jerry