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Showing all posts by "Scoot"

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Posted in Reduced frequency and changing pattern with age. on 22 Mar, 2018 - 7:39 am

I've had them for nearly 30 years now. In the early days I used to get them yearly lasting about 2-3 weeks with about 4-5 per day. Then they went to I think about 2-3 yearly but lasted for 2-3 months. I'm having a bout now which is only just starting to decrease in intensity. So yeah, mine changed patterns throughout my CH career. Whether this is the usual thing I couldn't tell you mate. I guess you'll have to wait for more responses or someone to reply that's in the know. Hope ya holidays go alright !

Posted in Sholder pain before headache. on 22 Mar, 2018 - 7:33 am

And also - if you find Imigran ( sumatriptan ) doesn't work anymore go to Zomig or Zoltrip ( a zolmitripan ) - unfortunately it only comes orally not as a nasal spray.

Posted in Sholder pain before headache. on 22 Mar, 2018 - 7:30 am

Mine always starts in my neck. I use Metsal cream ( sorta like deep heat ) and rub it in before it hits me. It helps a wee bit.

Posted in Help please on 11 Mar, 2018 - 3:44 pm

Thanks but your patients must be on some sort of government subsidy ?
I'm a Queenslander now living in Northern NSW and I can't seem to locate any government assistance here.
I think there is a group called ENABLE but my GP reckons I won't qualify.
Sumatriptan doesn't seem to do much for me ( I have tried the nasal one also ).
Unfortunately ( as you would no doubt know ) zolmitripan isn't avail in a nasal spray in Aus.
I'll cut and paste your reply and take it to my local GP next visit re the other treatments.
Thanks so much for the info.
Much appreciated.

Posted in Help please on 09 Mar, 2018 - 5:12 pm

Thanks for your reply Peter. Have just heard back from BOC and got pricing on O2. Unbelievable !!
You'd have to be a Neurologist to afford it. I'm on a carers pension so I have no hope in hell of going down this track much to my disappointment.
I'll have to stick to Zolmitripan and wait til it kicks in 😱.
Anyway mate thanks again for that info. I'll revisit it when I win the lotto.
Cheers Scoot

Posted in Help please on 08 Mar, 2018 - 3:32 pm

Thanks Kim much appreciated.

Posted in Has anyone had experience trying Lyrica (Pregabalin) on 08 Mar, 2018 - 3:30 pm

I went on 150mg to start with Kim but couldn't function on them. They would just put me to sleep lol.

Posted in Has anyone had experience trying Lyrica (Pregabalin) on 07 Mar, 2018 - 9:28 pm

I'm on 75mg lyrica ( 1 three times a day ) for back pain. I am currently having my 2 yearly bouts of ch's and it doesn't do anything for me in regards to my head. Not sure it does much for my back pain either to be honest.

Posted in HELP! on 07 Mar, 2018 - 9:21 pm

You could also try the emergency department of the nearest public hospital to you. May be a bit inconvenient but alas it would be an option ??

Posted in Help please on 07 Mar, 2018 - 9:16 pm

I currently use Zolmitripan for my CH but want to try oxygen. My GP says an oxygen concentrater may be a more economical option. If anyone can give me a heads up on both these options it would be greatly appreciated.

Posted in Do I have cluster headaches? on 07 Mar, 2018 - 5:34 pm

Sumatriptan doesnt work on me but I take Zomig (zolmitripan ) and find it can cut an hour or so off an attack. Unfortunately it only comes in tablet form. 2.5mg

Posted in Saying Hi on 07 Mar, 2018 - 5:21 pm

Hi I'm Scott ( but most people call me Scoot ).
Have been suffering these things every 2 years since I was around 30 ( now 58 this year ). They last for 2-6 months and I get 4-5 attacks a day.
Great to finally come across this site. Am typing this as I await my next one - ugh.
Anyway just thought I'd introduce myself and say hi and hope you are all feeling as best you can.
Love and light

Posted in Hello on 07 Mar, 2018 - 1:43 pm

Hi new to the website. My name is Scott and my friends call me Scoot. Have been having Cluster Headaches for 28 years now.
I am going through another bout of them at the moment ( I get them every 2 years and they last from 1-5 months with approx 4-5 attacks per day ).
So glad to see a website dedicated to this horrible infliction and let me say now I empathise with each and every sufferer on this site.
I take zolmitripan to manage mine (nothing else seems to work).
Anyway nice to meet fellow sufferers as I am feeling rather alone at the moment.
What works to relieve the pain for you guys ?