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Financial coping strategies during CH cycles

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From: Forest Hill
12 total posts
Not currently suffering :D
Hi everyone,

You may have seen my earlier post regarding income insurance to cover CH.

I am interested to hear the memberís thoughts on ways to cope financially during CH cycles, and also your personal experiences of dealing with CH throughout your careers.

As the years go on it is becoming increasingly difficult to explain the condition to employers who have never before heard of it. When CH first entered my life I was studying at uni and missed many classes during the cycles. Now, nine years later and well and truly into my career I miss up to two months of work during the cycles and have been forced into resigning in recent years. I have had neuro's write letters to employers but unfortunately even that didn't help too much.

It has left me thinking that the only way to deal with it is to start my own business and work from home, and at the same time put away money each week to cover the loss of income during the CH cycles.

What are your thoughts on this and how have you coped?
Looking forward to hearing from you all.

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From: Wollongong
73 total posts
Currently suffering :(
Hello Belle

I hear you loud and clear. How difficult it is to walk into work 2 hours late looking perfectly fine (the off and on nature of our disease) only to explain that you had a 'headache' - yeah right thinks the employer and you're left feeling not only exhausted from the pain you've just been through but justifiably frustrated and embarrassed at being late.

Worse still, that feeling just before a meeting or important task where you just know you are going to get hit. How do you do it? You can't just run and hide in the bathroom for 2 1/2 hours - it's a nightmare and I know exactly how tough it can be. Full time work and cluster headaches don't mix.

This is where so many people become unstuck. The psychological effects of having cluster headaches is nearly as bad as the pain itself. I experienced it today, I work shifts and arrived at work at 12:30pm an hour early ready to start at 1:30pm. There's a cafe outside work and just as I sat down I felt that sinking feeling where you know you've got 5 minutes to go of sanity before the beast rears its ugly head. I had about 10 colleagues at my table and the conversation went like this:

'Alex, you look terrible and you're very quiet, what's wrong'
'Cluster Headache' * stares off into oblivion
'I saw today tonight last night, did you see it? A cure for migraines!!!'
'Not migraines, much worse, cluster headaches'
'Oh.... I have 2 Panadol, would you like them?'
'I've just taken serious medication, I'll be ok soon, just need to chill for a bit'
'Yeah your eyes look like you're all drugged up, did you have a big night?'
'No, cluster headache'
'Oh.... What are they like? I had a 5 day migraine once'
'I don't mean to be rude, but I'm in a shit load of pain, just need to chill'

Everyone starts talking again, another few people arrive.

'Hi Alex, you look sick - what's wrong?'
'Cluster headache'
'Oh, you should go home'
'By the time I get home I'll be fine'
'There should be a bed or a sick bay'
'(No response / KIP8)'

Another few people arrive, too much pain to get up and move.

'Alex, do you have the flu? You're face is red and you can't stop blowing your nose'
'Cluster headache'
'Oh, what are they?'

I have my iPad with me, bring up the Wikipedia entry for cluster headache, pass it around the table.

'Oh.... Shit, worse than childbirth - you should go home'
'Keep reading, 30 minutes I'll be fine'
'Oh ok, I'll see you upstairs'

Sure enough, the headache goes just in time to start work. A few people make nice comments. One guy texts me and says he hopes I feel better.

2 hours into work I'm called back into the office. On the walk all that's going through my mind is that somebody told a manager I looked really sick, out of it or worse on drugs. I'm expecting the worse. Turns out if was something completely unrelated.

I can't help you out here I'm sorry Belle. I'm going through a period where I'm questioning my own ability to work full time, especially in a job I'm not passionate about. I'm planning on going through the next 6 months in order to clear as much debt as possible and look at returning to full time study at University.

I was speaking about this to a friend the other day about how much cluster headaches have interfered with my career. She actually gave me some brilliant advice:

'Explain that you can be the best employer ever for most of the time, but for 2 hours you need time to yourself because of a medical condition. Show your employer some information regarding headaches, explain that you'd be happy to use that time as your lunch break and that you could work extra hours if need be'.

The other option is the disability support pension - speak to Ben about that. Companies operating in Australia have a duty to cater to people with a disability, it's certainly worth bringing it up with your employer and negotiating changes of hours etc. Some people will go out of their way to help you, others will never understand - those people aren't worth working for anyway.

I believe I have a successful career ahead of me which I'm prepared to work for. I also realise that in doing so I'm going to need to be completely up front at interview time and state:

'I can be the best employee you've ever had, but I will occasionally need 2 hours where I can isolate myself because I suffer from this condition (show info)''.

Work for me is very important, but thankfully I'm not driven by money, rather causes. This enables me to surround myself with people who genuinely care about their work and I hope will be willing to take on somebody with a disability.

Realise Belle that by simply working full-time you are doing something remarkable. I'd suggest you speak to your manager before resigning. If you're episodic, explain than in a few months you'll be back to normal. If Imigran works for you try and use it if there are important meetings etc. Try and find some abortives you can use at work.

Most importantly, let people around you know what you're going through. I was surprised at the response I got by showing one Wikipedia article on my iPad today. Now 20 of my work colleagues know that I'm not making it up and that the pain is just as bad as I make it out to be.

Most importantly, don't be embarrassed. You did nothing to bring on this disease and were dealt a shit deck of cards. I have had to change my career goals because of my disease, but in doing so I've found an area of work which I believe will be much more rewarding.

Good luck!
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From: Forest Hill
12 total posts
Not currently suffering :D
Hi Alex,

Thank you so much for your reply and sharing your experience. I think that you are amazing going through CH while you are at work and not only that but in front of work colleagues. I cannot think of anything more uncomfortable.

Your story is one of absolute struggle and I really feel for you, but at the same time it is comforting to hear that I am not the only one who goes through these thought processes on a daily basis. Even during CH free months I still spend so much time thinking about it each day, trying to work out how I will manage when the next cycle begins.

I have episodic CH with the attacks occurring in the middle of the night around 2am. It peaks quickly reaching level 10 and lasts for 3+ hours, until eventually decreasing to level 4 which continues on for many more hours. Due to the timing and the length of the attacks once it is finally over I am so completely exhausted and sleep deprived there is no way I could manage to work. This happens each night for just two months... and then life returns to normal for the remainder of the year.

In writing my initial post regarding financial coping strategies I hoped to find out if my situation and my concerns are exactly the same as so many others out there. I guess a lot of the time I feel fairly isolated and have taken on a suffer in silence approach due to nobody around me fully understanding what it is like. It is great to be able to speak with the members about their experiences and to find out how CH affects each individual.

Thank you again for your reply and for your advice.

Belle smile
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606 total posts
Not currently suffering :D
Ha. I just wrote a post somewhere that says more or less exactly what has already been written here (minus the personal bits) I love the willingness of the CH community to share info and support each other without pretence. I don't see that with other groups. Maybe it's because all of us know exactly what everyone else is going through.

I haven't had to worry about financial support up til now, but that's going to be tested soon. No cheap meds or health coverage here either. Some things need a prescription- rare, but increasing- and you must see a doctor EVERY time. no repeat scripts.
My yearly exam for my work visa is nearly $500, and i'm liable for the lot. But disposable income seems to be more abundant here for some reason- nothing empirical to back up that feeling though.

I've been extraordinarily fortunate professionally, as circumstances and luck has meant that CH has had no impact on my casino career whatsoever. I lost very few work hours, and my duties were never hampered in any way by CH. Problems started when the casino closed and i was transferred to the hotel though- very many dead spots of air, in stairwells and such, and an almost instant trigger to me. I made suggestions- all were ignored. I've since resigned, so financial struggles could well be nigh. I'll post any results...
cheers peter.
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11 total posts
Not currently suffering :D
I hear you all loud and clear!!
I have just lost the 3rd job in 5 years... 2 other jobs I wasn't even able to attend.. A job a year!!
For months I explained these headaches to my employer, who constantly reassured me my job will remain for my return...
It wasn't! After 2 months I lost my promotional position, then my entire employment. I was the most qualified in my position, had spent my 2 years pain free there, cert 3 in my area... I did all I could to prove my worthiness for when this happened.
I was fired on a medical cert, and placed back on to the dole!
As for how I handled it financially... I am a single mother- my eldest daughter, now 17, left her schooling to look after me (as the last one was so severe- and she has been around during the last 10 years while I go through this)... My youngest daughter lives with her father, and it is the best place for her to be.
I found I was constantly selling everything I could, I was getting food from St Vincents delivered to us (as I need to be in complete darkness and silence during the headache months).
To this day I get threats of disconnection and restrictions on all utilities....
This is hard work, and I am unsure if I should try to get another job to lose...... My Dr (I have asked 2 different Dr's to fill out the Disability Pension form) refuses to fill out the forms, so I seem to be in a catch 22!!
I am now living on "Borrowed time"- my normal 3 months pain free is up- I am scared to death of getting another headache!!
No- I'm not scared of getting another headache, I am scared of having to suffer to travel back to the Dr's again (40km trip- waiting in bright white lights for an hour or so,and travelling home).
I thank God my daughter has her L's now.... That has taken a bit of strain off!! However, due to finances, I can't afford the rego due in 2 weeks!!!
I'm also scared of getting another job, only to rely on it to live, then lose it again, and go through the torment of travelling etc to get back onto Centrelink!!
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