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Posted in on 28 Oct, 2014 - 5:54 pm

Hello CH's smile
How is everyone doing? I haven't been in touch since the last cycle, almost 2 years ago. I was cruising along in life, planning my wedding, loving every minute of everything! Unfortunately, I made the mistake of putting CH completely out of my mind! Totally unprepared, now it's back and I'm surrounded by medicine packets, oxygen tank by my side! Going into the second week now wondering how long it will last this time. Trying to remain super positive, hence all the smilies smile Truth is, I feel like death warmed up, waiting for the next attack smile

Love to hear how you are all doing smile

Belle


Posted in on 28 Oct, 2014 - 5:52 pm

Hello CH's smile
How is everyone doing? I haven't been in touch since the last cycle, almost 2 years ago. I was cruising along in life, planning my wedding, loving every minute of everything! Unfortunately, I made the mistake of putting CH completely out of my mind! Totally unprepared, now it's back and I'm surrounded by medicine packets, oxygen tank by my side! Going into the second week now wondering how long it will last this time. Trying to remain super positive, hence all the smilies smile Truth is, I feel like death warmed up, waiting for the next attack smile

Love to hear how you are all doing smile

Belle


Posted in Financial coping strategies during CH cycles on 25 May, 2013 - 10:08 pm

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


Posted in Financial coping strategies during CH cycles on 21 May, 2013 - 3:20 pm

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.

Belle


Posted in Income protection to cover cluster headache (pre-existing condition) on 21 May, 2013 - 2:55 pm

Hi Ben,

I hope that you enjoyed the weekend and that you are having a good week so far.
Once again, thank you very much for the information.

Unfortunately, I am sure it is CH. In regards to a headache diary I haven't kept one but have made notes during the cycles throughout the years.
I am not entirely sure of my neuro's views on Indocid but she has written in the notes that it can be very good for unilateral headaches. I am feeling very strongly about not taking any of the meds during the next cycle and sticking with just O2. Easy for me to say that now but when the attacks begin the pain will be so excruciating I might change my mind - on the other hand I've been dealing with CH for a long time with no help from any medication.

I'd love to get in touch with Batch re: O2, thank you.

Speak soon smile


Posted in Income protection to cover cluster headache (pre-existing condition) on 17 May, 2013 - 6:25 pm

Hi Ben,

Thank you very much for all the information and your time, and Iím sorry to hear of the loss of your O2 expert, Barry. I have trialled O2 in the emergency room a few times in the past. The attack was well and truly happening by the time my partner had driven me there, so it took a while to have any effect but the length of the attacks was shortened after sitting with the mask for around 30-40mins. I haven't known about personal O2 use for too long and my most recent neuro wrote the script for Supagas.

Right now I am not taking any of medications. My neuro thought it best that I fill some of the scripts but not all at once. I haven't yet filled any of them and all of your knowledge and experience is helping me to decide which I will fill.

I am unsure which month the cycle will begin this year, it is changing each year now, so I have all the scripts at hand ready to go. My neuro has written out instructions as to which I should take, at what point during the attack and during the cycle, and how much of each. I was told that some of the medications I have been prescribed work in the same way as others and I am to choose which I prefer. Trial them, decide which works best and forget the others. Stemetil was prescribed to deal with the vomiting during the attack.

Honestly I would rather not take any of them and I am looking further into Batchís regimen to try and avoid taking the medications. I am also really hoping that having the O2 at hand will work miracles and I won't have to touch any of the medications. I am not sure if O2 is capable of miracles, I will read up on it as you have suggested. I havenít had a good run with the few medications I have been prescribed in the past in terms of side effects.

Speak soon,
Belle


Posted in Income protection to cover cluster headache (pre-existing condition) on 16 May, 2013 - 10:21 pm

Hi Ben,

Thanks for your message and sorry for the delay in replying. Here are the details of the scripts that I currently have:

Imigran Nasal Spray 20mg/0.1mL
Prednisolone Tablet 25mg
Deseril Tablet 1mg
Temazepam Tablet 10mg
Indomethacin Suppository 100mg
Indomethacin Capsule
Stemetil Suppository 25mg
Maxalt Wafer 10 mg

I am very unfamiliar with most of these having only been treated with Verapamil, Prednisolone, and ergots in the past without any success. I was offered intravenous steroids a few years ago but found that my health insurance wouldn't cover the inpatient costs. The fees upfront were around $2000 in a private hospital so that option just wasn't possible. I would have gone into a public hospital of course but there was a long waiting list. This is the first year since it all started in 2005 that I feel slightly more prepared. I've set up an account with Supagas and it is helping great deal just to be able to chat to you and the members.

Looking forward to hearing your thoughts smile I have a day off on Saturday and will start a new topic with the members re: coping strategies.

Belle


Posted in Income protection to cover cluster headache (pre-existing condition) on 14 May, 2013 - 10:33 am

Hi Ben,

I hope that you are doing well. Thank you for the information on "Batch's anti-inflammatory regimen". Keen to look further into that rather than fill all the scripts that my neurologist has written. In regards to my initial post on income insurance at this stage I will not be able to progress any further. Medibank Private requires me to be in the same line of employment for 12 months before I can apply. I have just recently commenced a new position so I will have to reassess in 11 months.

I am wondering how any of us affected by CH manage to get by when we are unable to work for long periods. I would hope that the disability pension is enough for chronic sufferers to make ends meet as they of course need far more help and support. I am thinking of beginning a new topic to ask the members how they have managed to cope throughout the years.

Speak soon,
Belle


Posted in Income protection to cover cluster headache (pre-existing condition) on 10 May, 2013 - 12:11 am

Hi Ben,

Wow, thank you for the information. After reading through your post I feel as though the phone call today will not be the last of it and I should not give up on it yet. I greatly appreciate the time you have put into research tonight. I will post again once I make contact with Medibank Private for round two.

Iíve always known that suffering from CH for only two months of the year is mild compared to some, but I have just read in your profile that you have been affected since age 4 for 10 months of the year on average.. absolutely shocking Ben. Now I can see why disability pension is most certainly necessary for some sufferers.

I am seeing a new neurologist this year, she is the third one Iíve seen and has prescribed a range of medications that the other neurologists never spoke of. Iíd love to hear your thoughts on that topic sometime. I will find the right thread to discuss it.

Belle


Posted in Income protection to cover cluster headache (pre-existing condition) on 09 May, 2013 - 11:31 pm

Just received notification of your second reply.. reading now!


Posted in Income protection to cover cluster headache (pre-existing condition) on 09 May, 2013 - 11:29 pm

Hi Ben,

Thank you so much for your reply. It's great to hear your thoughts on the subject even if you cannot offer any info on income protection. I should be researching Disability Pension...couldn't be more accurate!

I know exactly what you mean about lack of awareness across the board. I have a feeling that we can unfortunately add Medibank Private to that list. I am unsure that I have stumbled across a form of CH recognition.. Once I spoke the words 'pre-existing condition' I was put on hold while the operator went off to speak with a manager. The operator had never heard of CH and I had given her all relevant details and how it affects my working life. Once she returned from speaking with management the answer was clear. They cannot offer me income protection due to the condition being pre-existing. She didn't elaborate any further as to how they came to that decision, but the overall feeling of the conversation pointed to lack of awareness, most definitely from the operator but also from management.

I did not stay on the line to delve deeper as it had already been a 30 minute phone call to get that far. I would be very interested to hear of your findings if you do decide to investigate further.

After 9 years I wish I could say that I have the condition under control, but each year it is getting harder to manage mostly due to being unable to work for up to two months.

Thank you again, Ben, for your thoughtful response.

Belle


Posted in Income protection to cover cluster headache (pre-existing condition) on 09 May, 2013 - 6:07 pm

Hi everyone,

I'm Belle, new to the website and a cluster headache sufferer for nine years. I'm wondering if anyone has obtained income protection to cover cluster headaches? I've just spoken with Medibank Private and was honest in telling them my pre-existing condition. Because of the pre-existing condition I am ineligible and cannot receive any cover. I am not all that surprised by this but if anyone has gone through this before and has any advice or suggestions I'd be greatly appreciative.