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Posted in Hello from Canberra on 27 Dec, 2012 - 8:00 pm

Hi Jules,

I am also in Canberra and have been using O2 for around 5 years now. I had my GP write a recommendation for me to use high flow oxygen for CH. I contacted Oxycare they took a copy of the doctor approval to set up a private account with BOC. I now just ring the Fyshwick store and get a regulator with a tank for as long as I need. They are very good there and supportive even when you are returning and replacing two D size tanks every few days!!

Hope you can get some results.


Posted in Here I am again on 14 Jun, 2011 - 9:14 pm

Lili - thanks heaps for the suggestion for aiding sleep. Fortunately running around after two little people all day, falling asleep is not the issue, it's really my fear. icon

Heather and Matt, your advice is great. I actually do see a psychologist already as I have developed post natal depression with both babies (what a mess!!) and was actually on the mend when these nasty buggers turned up again. I too got taught some relaxation techniques but I never thought to apply it to an attack. I will definitely try it next CH, thanks!

So far the Isoptin has been keeping the CH at bay. I have had about 3 attack free nights since starting. This is unheard of for me in the 9 years that I have suffered!! So my fingers are crossed for the moment.

I hope you are all keeping pain free
Cheers, Bec

Posted in Untitled on 14 Jun, 2011 - 9:06 pm

Hi all,

Just my little addition to the Isoptin topic. My neurologist put me on this (180mg per day) along with a steroid a week ago and so far I've only had 2 CH in the last four days. Usually it's two per night for around 1-2 hours. Oxygen is always my staple go to for aborting pain but in recent years I am finding that I can get the first CH to go within twenty minutes but the second hits harder and faster. Has anyone else noticed this with oxygen use?

Also, the Isoptin does feel like a rubber band is squeezing my head. I can feel the shadows trying to break through, luckily though no full blown attacks.

Lucky, I hope you have had some relief with this treatment. This is my 9th year with CH and the very first time I've been given something other than oxygen that has even made a dent in the attacks icon

Posted in Here I am again on 08 Jun, 2011 - 8:12 pm

Hi Heather,
It's certainly days like today that make me question my chances of remaining sane. I've just managed to end a two hour attack (& my third attack for the day) with O2. However as I sit here watching Masterchef, instead off enjoying Nigella judging, I am getting anxious about what falling asleep will bring. I'm exhausted and I'm only 5 days in.

My visit to the specialist today has ended with a course of prednisone and Isoptin. So I will start them both in the morning and return to the neurologist in a week to adjust.

Thanks for your support!

Posted in Here I am again on 08 Jun, 2011 - 1:09 pm

Hi everyone,

It's been years since I posted anything - I've had 2 babies since 2009. I did hope that I would be one of the lucky ones that didn't get another CH after being pregnant. No such luck I guess because here I am again. The cycles are coming every 8 months now. I'm off to the neuro again today to see what other treatments he can offer, as being pregnant and breastfeeding during the last 3 cycles made it impossible to use anything other than O2.
So, just thought I would check in. Will keep looking through posts to see if anyone has come up with the miracle drug/treatment in the time that I have been absent!

Posted in Chronic paroxysmal hemicrania on 24 Nov, 2009 - 8:55 am

This is very interesting Roger! Thank you for this information. I am curretnly suffering very badly at the moment as I have jsut started an run of about 3 a day. I am going to see my GP and then Neuro tomorrow so I will bring this up with both. I am desperate now more than ever as I have a 10 month old and I am finding it very difficult to look after him when I am locked in my room screaming for 2 hours!


Posted in Just got pregnant on 24 Nov, 2009 - 8:52 am

Hi Steph‚

Congratulations! Unfortunately my CH came back when I was 38 weeks pregnant and the only thing they were willing to let me use was the oxygen therapy. That was until I showed up at delivery and demanded to see a neurologist. Apparently there was some type of steroid they were happy to use on me as I was so far along‚ but I never got that far as I was actaually in labour at the time!

Maybe talk to your doctor about it but def give the alternative stuff a go if you haven't already.

Good luck with it!


Posted in Untitled on 10 Mar, 2008 - 11:25 am

Hi Kazza‚

Welcome! Unfortunately only time will tell just how long your bouts with these headaches will go. I have been getting CH for 6 years now and every year they get longer and longer‚ I am now up to 3 weeks with about 1-3 CH a day.

I do agree with Barry about the Imigran and Mersyndol‚ they do squat when it comes to this level of pain!

Barry‚ I haven;t been on here in a while as I was not expecting to get my attacks until July‚ but here I am searching again for treatments and options to abort the pain when it hits. thank you for all the info on Oxygen‚ in the past I have been hitting my head against the wall when asking doctors for oxygen. But with your info about the account at BOC I should be able to give it a go!!

Posted in Untitled on 20 Jul, 2007 - 9:56 am

Great suggestion Kellie. Nickee I also printed these information forms out last year in the middle of a very painful cycle.

I am a teacher too and I know how hard it is to take time off work‚ I imagine being in a small town would make this harder. Once I gave that information to the Principal and my colleagues‚ I found that dealing with my cylce this year has been so much easier because they understand what I am going through.

It's hard for people to comprehend‚ but we just have to keep them as educated as we can so that they are supportive when we need it!

Good Luck.


Posted in Untitled on 20 Jul, 2007 - 9:50 am

I am definitely seeing results from the acupuncture. I am in the 3rd week of my cycle but i have only had one every two to three days and even then they are painful but bearable.

I have only had 2 full sessions over the last 2 weeks but have been in to see her every second day or so to touch base and have the skin needles replaced. You have to drink so much water and fluid because your body gets really dehydrated after treatment and when it is trying to heal.

My partner is not yet convinced that this will work‚ but whether it is for good or bad‚ acupuncture has had an effect on my CH.


Posted in Untitled on 10 Jul, 2007 - 11:30 am

Hi Nickee

I also work with children and I am suprised at your ability to continue at work with a CH. I have only ever had one infront of my kids‚ which was last Friday. They were great‚ they ran and got a heat bag for me and I was soon sent home as I cannot be around anyone when the major pain hits.

I agree with Roger though‚ the tears and nose running are my last concern when the pain is bad‚ although after a while it starts to realy irritate me. I just have to try and deal with it!!

Take care


Posted in Untitled on 10 Jul, 2007 - 11:15 am

Thanks for the reply Kellie‚

Hope you are doing ok today. I have to say I admire your strength at being able to live with these headaches day in day out. I struggle like crazy to make it through my cycle each year! It really puts things into perspective when you hear of people who actually do suffer chronically.

I went to the doctor today AGAIN‚ and all I have walked away with is the suggestion of high strength asprin at the onset of an attack. I think that some people enjoy treating us like idiots sometimes!

Anyway‚ the interesting thing that came up was the same thing that the acupuncture doctor asked me. They both talked about my period. There seems to be some reason for believing that hormones play a big part in why young women get these headaches. The doctor asked me today if anyone had tried putting me on the pill without a period to see if that effects the headaches. I haven't tried it but was wondering if that was something that you had tried?

Funny thing is‚ we are likely to try anything to stop the pain!! I can certainly live without my period!!!!!icon

Take care‚


Posted in Untitled on 10 Jul, 2007 - 11:07 am

At the moment she is trying to stop the current headache cycle for me. However‚ once the cycle has stopped she thinks that my trigger is one of two things: a virus or hormones.

I know that the hormone trigger doesn't really help men solve the problem‚ but it may be a very good explanantion why there are females in their 20s getting these headaches.

Hopefully I only have a few more days to go of this cycle and can give you more feed back on the success of the acupuncture.


Posted in Untitled on 09 Jul, 2007 - 4:20 pm

I have been doing my own research into medications as my GP is determined to only prescribe me Imigran‚ despite the fact that is does nothing for me.
I have found literature indicating cortisone as a very fast acting medication that is used as a preventative for epidosic sufferers. It seems that it is used in conjunction with another preventor like verapamil. Has anyone got any feedback they can give me on either of these drugs? I am off to have another battle with the GP in the morning and I really desperately want to find something to take the edge off these demons!!!!



Posted in Untitled on 09 Jul, 2007 - 4:14 pm

I tried acupuncture for the first time last Thursday. She was very confident that she could stop them occurring and also find the trigger.

I have had 10 attacks since I left her clinic. I don't know still whether this will pay off‚ but right now I am willing to try anything.


Posted in Untitled on 05 Jul, 2007 - 12:25 pm

My partner found this site for me about a week ago when we were suddenly woken up by that all too familiar pain in my head. I have been suffering from CH for 5 years now and am only 26. For the first few years I was handballed to my chiropractor because the doctor believed that I just had a bad neck tha twas causing migranes. How wrong she was. My chiropractor took 3 years to work out that due to the seasonal nature of the CH and the fact that I could set my watch to them that they must be CH. From there I tried minor pain killers like the anti inflamatories and mercyndol. As you all are probably well aware‚ these do nothing.

Until I found this website I was unaware of the other prescription medication that is available for CH sufferers. I was so happy to finally find an extensive list of options and treatments that I could try.

I saw the doctor this week and requested Imigran as a starting point and specified that I wanted the nasal spray as the tablets were going to be too slow on the onset of an attack. He argued that I did not need the spray as the tablets would be sufficient. Those of you who may have tried the tablets will know that they do nothing. They are way too slow.

I suffer once a year around this time. My CH usually stick around for 1-2 weeks but is getting longer as I get older. Until this year I would have one a night that would be so intense that daily life was hard to deal with. This year i am getting 2 a night exactly 6 hours apart. Makes it hard when I am supposed to be getting ready for work!!

I tried acupuncture today. She seemed very confident that she will be able to stop my bout this time and work on me to get rid of them for life. Wouldn't that be nice?! Unfortunately the longer I sit at the computer the worse my shadows are getting. So I will log off.

I do not normally bang on as much as this‚ but I guess it takes a while to get your story out!