Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> How do you plan your lives??
        
(Message started by: marcelonyc on Nov 16^th, 2004, 1:55am)

Title: How do you plan your lives??
Post by marcelonyc on Nov 16^th, 2004, 1:55am

I still have not figured the proper ettiquette of starting a new subject so please bare with me.

I am new to the board and unfortunately what brings me to visit is that I am at the beginning of a cycle. My frustration and the area where i would like some support is in hearing about how some of you havegotten through your lives. I have been plagued with the CH since my late teens. At this point, it would be stupid of me to pretend that things may just go away. I have no clue how long this cycle will last nor how painful, etc. and it is taking it's toll in my outlook.

The last cycle forced me to stop working as a a waiter & explore disability. That was a nightmare on to itself. So once i felt okay, I explored returning to work in a field of interest and one I started when I was younger: the arts. So as of this past fall i enrolled in art school, and now the headaches are back.

I am so angry and so frustrated. i am keeping the school abreast and meanwhile would love to hear some of your experience in coping with this illness.

Title: Re: How do you plan your lives??
Post by sandie99 on Nov 16^th, 2004, 5:23am

Hi there,

the thing is, when I can, I don't plan my life ahead that much.

Sure, what comes to my uni studies I make sure that I'll start all my projects well in advance so my chronic ch won't have too huge say in them anymore. It nearly did once.

I have accepted the fact that the beast has a say in my life what comes to my daily things, but not on the general direction. I have given myself time with my goals, but I'll reach them. It has made dating hard, though. I haven't figured out yet what would be the best time to mention something like this... It's not exactly something you just mention casually in a conversation or the other person doesn't get how much impact has.

My pals understand that if I am irritated because of ch and I am still teaching my mom about it. I am confident that one of these days she'll get it.

So, accept that ch will control your days, but hey, don't let it control your year, if you know what I mean.

Best wishes & PFdays,
sandie99

Title: Re: How do you plan your lives??
Post by Tetris-addict on Nov 16^th, 2004, 7:31am

I was lucky here, too.

I didn not get my first hit until I turned 27.

I did want to be a teacher in an elementary school,
but it didn't pan out, and now I am working at a
daycare. as a lead teacher.

I find it easy to work, rather than stay home.

I get hits in a perfect rhythm with the children's schedule. gettting up at 7 with one, but going to work at 8 as it starts to disappear. around 10, we get to go outside, and the fresh air decreases the kip level.

The rush and crush of changing 10 kids and preparing their lunches keeps the beast from visiting until they are all tucked to sleep on their cots, then the beast will come, but there will be no witnesses. ;)

It would try to come back around 2, but then i have the change the children and feed them snack...

so the beast hides until about 5 or 6....
but then he comes back violently.
Luckily, by then the parents come to collect the kids
and I get to shuffle slowly home...to "dance" in private.

Of course I have an awesome husband who is
very comforting. He leaves me space, but not "alone"
so that I never have to call out to him if it gets too bad.

Tests and studying for college would be really difficult.
But you have to simply pace yourself. You may not have the pattern figured out, you may not even have a great
regular pattern to the pain... but you can try to figure out when it will hurt the worst, keeping a journal helped
me. I don't have the best memory in the world, so I wrote everything down.

Figure out when it hits, and how long it lasts.
Even having an abortive will help with the pain.

Being tired, well you have to push yourself.
Wirte your "to-do"list, but give yoursel permission to
continue the "to-do" list for the nest day.

I gave up on a daily list, and now use a "weekly" one,
Sometimes I have to put off doing the laundry for two
or three days....because I am too tired. But giving myself permission to do that took the sting out of
this darn disease.

Good luck!
TJ

Title: Re: How do you plan your lives??
Post by don on Nov 16^th, 2004, 7:36am

My life is scheduled around the current supply of imitrex and when the next refill is due.

Title: Re: How do you plan your lives??
Post by Bob_Johnson on Nov 16^th, 2004, 8:46am

A wise question!--what can I do to keep control of my life?

Given your public life, clearly working with your doc to try and find preventive meds which work is the first step. Abortives are wonderful but always after the fact.

An old treatment which has fallen from favor: using Ergomar during the day as a preventive. Might explore this with your doc. For some folks, it is effective in preventing attacks. The only consideration is to watch your total daily/weekly dose. (It's a little tablet of ergotamine which you put under your tongue to dissolve.)

It can be used along with Verapamil and there are other prevention combinations to explore and try.

Title: Re: How do you plan your lives??
Post by unsolved1 on Nov 16^th, 2004, 9:05am

on 11/16/04 at 07:36:18, don wrote:

My life is scheduled around the current supply of imitrex and when the next refill is due.

Ditto

Title: Re: How do you plan your lives??
Post by E-Double on Nov 16^th, 2004, 9:12am

Stay as positive as you can and have meds stockpiled and ready for battle if/when needed.

Life goes on ya just need to live it!

Took me a long time to stop questioning the "Beast" and to get motivated to start living.

I'm a Special education teacher/Behavior analyst and run home schools for developmentally disabled toddlers.
I go form house to house all day and have to teach, counsel, and train. It gets hectic but I have learned to never leave home without my meds regardless how I feel(sometimes feel great....then BAM!)

Keep your chin up and remember... "IT IS WHAT IT IS" so breathe and try to live to the best of your abilities.

Wishing you the best and you can drop a line to the NYer if ya like.

Best,
Eric

Title: Re: How do you plan your lives??
Post by nani on Nov 16^th, 2004, 9:38am

Validating what everyone else has said... you just learn to work around it. Get on a prevent combo that works, keep your abortives handy, and just go on. The beast would like nothing better than to render you helpless and hiding from life...so you can't let it. You don't say which arts you are studying, but pain can actually add something to your work. Acting, visual arts, music...all can be enhanced when you've known suffering...at least IMHO. Good luck to you...hang in there [smiley=hug.gif]

Title: Re: How do you plan your lives??
Post by sevlow on Nov 16^th, 2004, 1:26pm

Don't let it stop you from doing what you do is my advice. I didn't get my first CH until Sept 26th of this year, and have had them pretty constant since then. Thought I was coming off my cycle last week after 2 1/2 PFDs, but then have gotten hit hard the past two days.

I am an Accountant, and am lucky that I have the best boss I could ever ask for. She trusts me to do my job, and if I need to go home to fight my little friend, she is cool with that, and I make up the time later.

Also, the best non-medicine for me during an attack is to keep doing what I was doing before hand (up to Kip 7-8+, when all bets are off), meaning that if I am cleaning the house or reading the paper, just keep doing it, and focus a bit of energy on keeping them down. Having something else to focus my thoughts on keeps me from getting into a funk that would just make me feel worse.

Best of luck.

Chris

Title: Re: How do you plan your lives??
Post by debco on Nov 16^th, 2004, 2:39pm

It's something that stays with you all day, you never can forget that they happen to you. You either have a good night or a bad night. Plus it takes so much out of you, I feel real shaky all day and anxious. I guess when I feel good I enjoy it and try to get as much done as I can. I own a business, so that gives me a lot of pressure on top of dealing with these headaches. My husband and son are pretty understanding with me (it's hard to eplain to them about this because there's no real reason for them, it frustrating because I feel I have to defend that it isn't a psychotic occurance it's just some weird biological thing that happens to my brain vessels at night)
But have used 02 and it has aborted the CH, I just keep my fingers crossed it keeps on working for me. I just really have interuppted sleep at night, so I'm pretty tired and look like hell.

Title: Re: How do you plan your lives??
Post by marlin on Nov 16^th, 2004, 3:01pm

<<My life is scheduled around the current supply of imitrex and when the next refill is due>>

It's sad but that about sums it up. I'm fotunate, they eventually go away entirely for years. That gives me something to look forward to and some time to stock up on Imitrex.

You need to get with a neurologist and get started with the injectibles. I suffered for years with no relief. During one particularly painful sequence I literally considered killing myself. Now it's manageable. Be thankful you're not an airline pilot or submarine captain.

Title: Re: How do you plan your lives??
Post by EvertBoer on Nov 16^th, 2004, 6:40pm

Most of my "hits" were when I could relax, like as soon as I got home. Also, driving seemed to cause a CH, and of course while sleeping. To be safe, I would take my portable oxygen along to work (in the car), and would run out there on the rare occasions I got them at work. If I was driving, I would just find a place to pull over and start the oxygen or take an imitrex shot until I could drive again. I'm also lucky that I'm episodic so would have PF times, at which point I would forget all about them until the next episode. I used to worry skydiving, what If I get hit while freefalling or on the way up in the plane, but apparently I was always too busy to get one. I took along ergotamine suppositories (pre imitrex days) when I went rafting down the Grand Canyon. Fortunately, I was too busy there also, since the suppositories all melted because of the 120 degree heat at the bottom of the canyon. I guess it just boils down to not letting it destroy your life. It is easier for some of us than others because of more PF time.

Title: Re: How do you plan your lives??
Post by Ruth on Nov 16^th, 2004, 7:09pm

I hear what you are saying, this whole part of our lives really sucks. When we are in cycle life is just so darn frustrating. We get depressed, angry, frustrated, tired, burnt out etc.
How to plan your life around all of that?
The only thing you can do is like so many have said, take one day at a time. You no there are going to be bad ones when you won't feel like doing much or can't do much.
Try to find something that helps you get through it.
I used imitrex and O2. Still was not a walk in the park and many days I felt like I was at the end of my rope and couldn't go on.
I so did not want to go down this road again, but I have many times. I hate it and so does everyone that writes a post here.
That is why we are here, and that is why we try to help each other.
You have found a good place to vent and share and ask questions, I don't no if I have been of any help, but I just want you to no that I care.

Ruth

Title: Re: How do you plan your lives??
Post by marcelonyc on Nov 16^th, 2004, 11:01pm

My God you guys are all incredible. I've gone to support groups for various other issues but this is incredible. It's almost like I can feel your personalities. THANk YOU!!!

Yes one day at a time works for me, even minute at a time during attack. I actually feel one rearing it's head so i will be brief. i want to respond to everyone. I bottom line agree and believe that life does go on. I made my plans during PF (right ??) and now I am having an episode and know from experienc that this too shall pass. For my Chronic bros. and sis. I so feel for you. I have a hard time w/ the episodes and don't mean to sound insensitive but I can't imagine...my heart goes out to you.

I think the immitrex worked this time pretty quickly. I actually started writing this about 20 min ago right before one came on and was trying to heed the advice of not stopping and laying down. I was actualy working on typography assignment and decided to check this site as the devil crept in.

Today was not so bad, this past one was the first one. I started to think that maybe I was being irritational by trying to reach out to the Chair of the Graphic Design dept at SVA here in NYC. It's so funny how the devil really plays some tricks!?!?! My sleep is off as this past weekend and especially Sun-Mon AM I had bad ones. As a result, i missed the first 1/2 of class, where my work was shown. But this is where I am giving myself a break.

It really does a number on the ego to have to explain this illness. Especially that at given face value, explaining the attack while one is removed from it feels like I am talking about someone else. Does anyone understand this?? I'm sure you do. I guess it's important to me and only I can articulate my condition, along w/ doctor's notes.

This has prompted me to reach out to the Chair as well as some of the teacher's. It so happens that the program of this school is one of the more competitive ones in this country. As a returning sophomore, we are required to take 7 classes. Plus the Mac and the design software is all new to me, which means a steep learning curve. The bottom line is that i don't plan on letting the CH stop me from pursuing my goals. I am commiting to finishing this semester.

Like all of us, I did not choose this, it was dealt to me. However I want to be wise in planning my near future. My school does not allow for PT studies except for medical reasons. So I made appointments with all the counselors, chairs, and coordinators to review what could be done for the following semester. The last episode lasted for3 months and was severe (average 4-6 p/ day). If that were to repeat iself then i would have to most likely withdraw from the next semester. Maybe they will allow a PT thing...

Tomorrow I see a pain specialist Dr. Uyanik at Columbia-Presb. I m taking the helpful recommendations of 02, imitrex shots, requesting verapamil, and inquiring about Ergomar. I can't thank you all enough for the support. Will keep you posted.

marccelo

Title: Re: How do you plan your lives??
Post by Sylvan on Nov 16^th, 2004, 11:10pm

on 11/16/04 at 18:40:35, EvertBoer wrote:

Most of my "hits" were when I could relax,

Just an observation from a newbie - but ALL of mine so far have been from a sound sleep. (granted - All = 5 so far - and my dx is still only "probable")

I'm wondering if constant activity can keep them at bay? I truly hope so - because my daily life is way to hectic - especially this time of year (xmas in retail) to deal with one of these headaches happening during the day.

Of course - no-one can stay awake and active 24/7 - but it would be something of a comfort to think that it at least possible to avoid them during waking hours.

Sylvan

Title: Re: How do you plan your lives??
Post by Nitro on Nov 16^th, 2004, 11:20pm

Hang in there. I actually got dismissed from a class(counted as an F on my record until I spoke with a dean) while in college because it happened to be at 10am which at the time was when the beast would visit. It was impossible for me to go to class most of the time. All of the advice givin is dead-on. Don't let the beast rule your life. Just keep on goin'.

Title: Re: How do you plan your lives??
Post by marcelonyc on Nov 16^th, 2004, 11:29pm

Thanks will do. how are your studies now??

Title: Re: How do you plan your lives??
Post by Wendy1 on Nov 18^th, 2004, 10:25pm

My life definately takes on a different schedule of events during a cluster.

Be very careful what you're eating, drinking, being overheated, away from abortives.

I am very cautious about where I will be and what I will be doing. I've learned from experience.