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Posted in Winter clusters on 17 Jul, 2019 - 10:12 am

Hi bob,

Thanks for reply. So no impact with weather regardless of where you are...... Bitches of things they are. i just know mine are on a 3-4 attacks same times per day..... always wake 1 hourish after falling asleep. icon


Posted in Winter clusters on 15 Jul, 2019 - 10:37 am

I have never got clusters in winter, first time ever after being in remission 83 weeks, I’m exhausted and it’s only been 4 days and they haven’t peaked yet.

I usually suffer in spring- summer season change or after a hot summer starting from jan- mar.

When do others get them mostly?


Posted in Magnesium on 06 Oct, 2014 - 9:49 am

Ive been taken supplements and magnesium is one for them for 1 year and i was hoping i wouldnt get attacks next season (i peak jan-Mar each year) but have got it between season changes some years, sept But past 2 days im showing signs of leadup to attacks sad So if i do, Mag hasnt done anything then.... back to drawing board. Im thinking of botox?


Posted in Subconscious Mind on 13 Dec, 2013 - 10:21 am

Thanks for your reponses Katherine and Gary. Definetly doing the I can bet this process and trying not to think ahead of the worst.
I havent been on site for a while, as since i stopped my intense work out system, I do not have any type of headache, not even a tension type. Im taking alot of the vitimans advised on Batches Regime too. I will not know for sure if this is working until the normal 6-8 week attack i get early on most years. But heres hoping I dont have to report attacks again.


Posted in Subconscious Mind on 03 Oct, 2013 - 1:44 pm

Thanks for your advice. I do not take peoples opinions to heart as they truely dont know what i experience. The closet person to me that understands, is my partner who sees the nightly attacks every night for weeks on end and stands back helpless. Infact he took alot of offence to what i replayed back to him.

I havent tried Oxygen, i went to the from hospital, but they wouldnt give it me, even though my mum was telling them this could help. I got prices to get a bottle to have at home, then the attacks stopped soon after. im fine at the moment. It was just exercise bringing on normal headaches and fear of them turning into a CH attack as they have many years ago.

Just wanted to know what people thought about this subconscious mind...

Cheers Katy


Posted in Subconscious Mind on 02 Oct, 2013 - 1:31 pm

Like most people you mention CH too, they like to give their 2 bobs worth ......sometimes this makes me very frustrated, because no one really knows what i go through, unless they suffer themselves. But I typically still listen to what others have to say and see if any of it is worth absorbing....
Last night, I was advised to look at my headaches from a different angle. Not as a medical condition, but as something that is triggered from an event in my life... ie- back to my first sign of an attack.. something i didnt like then possibly and now my subconscious mind sees the same happening and brings on headaches to avoid situations..... Meaning i can hide from the world, prevent me from doing the task at hand.

On a conscious level, i certainly do not want to suffer from CH anymore. I do want to get fit and enjoy the summers, not in fear of attacks... but how to overcome this if it is my subconscious mind.

As fellow CH sufferers, has anyone taken this approach before?
Im interested to see what people say about this? I was originally annoyed at what i was told, like i was being accused of bringing them on myself, but Ive slept on it... im wondering if this is at all possible.


Posted in Exercise and CH on 27 Sep, 2013 - 2:37 pm

Thanks, found a link to it. I will try Vit D.

I have already been using Fish oil and Magnesium on advice.


Posted in Exercise and CH on 25 Sep, 2013 - 11:51 am

Thanks for your response Peter,

This is a passage I found after doing research on exercise and CH sufferers.

Headache during exercise may be happening if you suffer cluster headaches, which occur in cycles and are particularly painful. Cluster headaches produce sharp pain typically on one side of the head and may affect your eyes as well. Exercise can set off these headaches because physical activity raises your body temperature, and increased body temperature is a known trigger for cluster headaches. If you experience cluster headaches, avoid physical exertion during a cluster period


Im fine walking at steady pace and doing yoga. Its the fitness sessions with pushups, squats, situps and set after set i find an issue with. but without these, i dont get the results i want. However my health and setting of a 6 week attack is defintely out of the question!!!

Tonight i will be taking my class at half pace and stop and use a cooling breath and suck iceblocks, wet cloth.... can only try.... guess how i go with my sleeping pattern and whether i wake with headaches will show...

I eat very fresh and wholemeal foods, so eating isnt a trigger.

Can you please advise the Batchs Vit D regime?

Regards katy


Posted in Exercise and CH on 23 Sep, 2013 - 10:41 am

Hello All,

Ive been cluster free since April. However seems i have taken up an "intense" exercise regime as part of a programe with my fitness/ Yoga centre, i have started to get normal headaches alot, i drink alot of water so its not due to dehydration. But now when i lay down, i start getting a pain behind right eye and wake at 3am. I prop myself up and wake at 7am, same deal, so i just get up. This has only happened since exercise. Im worried that im going to bring on a CH attack....Has anyone else have this issue with exercise as a CH sufferer?

A bit of my history.......but when CH started 13 years ago, they were treated as migraines, as they first came on while doing excerise with a PT, so i stopped these hard workouts and my mid year attacks also stopped.

A few years after, i was advised they were CH. I typically get a attack once year, usually Jan-Feb (this year mar- apr though?). Av length, 6 weeks, with 2-5 attacks a day. Always come on 1-2 hours after falling asleep and then 2 hours there after, until i just get up. And just one day, they will stop! But i can bring on an attack through day with food/ alcohol within 2-5 mins, but ive learnt the triggers and avoid those foods/ drinks during a cluster.

I want to get fit, but i dont want to suffer a set of CH attacks....


Posted in Tens on 01 Apr, 2013 - 7:57 am

This cluster attack cycle is causing hell on every level. I think there worse since taking verapamil and the imigran doesnt seem to anything now. Im so tired, soon as i sleep, sure enough i wake with headache an hour later and every 2 hours the rest of night, so i just get up. Have people tried tens unit and with any sucess?


Posted in Verapamil hydrochloride on 27 Mar, 2013 - 1:11 pm

Thanks, this was recommended by my neurologist whom spoke with my doctor yesterday.


Posted in Verapamil hydrochloride on 27 Mar, 2013 - 11:42 am

Hi all, after struggling past month with Ch, attacks are becoming more severe and every 2 hours overnight. Doctor has prescribed me Verapamil hydrochloride, have people had sucess with breaking the cycle with this? I need something as its effecting my job/ social life....


Posted in Imigran Concern on 09 Mar, 2013 - 9:29 am

I couldnt take imigran in tablet form, throw up almost immediately. I find the nasal spray effective if i get spray soon as attack hits.


Posted in 57 weeks free and back again :( on 09 Mar, 2013 - 9:26 am

Yes victoria. I also think it could be sinus related, as i suffered it alot as a child/ teen...


Posted in 57 weeks free and back again :( on 07 Mar, 2013 - 9:58 am

Thanks folks, i also have just been advised by family friend who is on similar cycle to me, has now started the CH again. Definetly enviornmental....


Posted in O2 Treatment costs? on 04 Mar, 2013 - 2:44 pm

On this website it has O2 Suppliers, that will tell you info.
Think its a $40-50 for cylinder, then $10-15 for rental.


Posted in 57 weeks free and back again :( on 04 Mar, 2013 - 8:50 am

For 12 years, every Jan / June, I faced cluster headaches. After stopping triggers mid year by stopping of full on exercise. January I would still get them, so i avoided long days in sun. My last attack was last year, it was for 5 weeks, with 3 attacks early hours after sleeping and whenever i had a trigger food during the cluster period.
This year, i did not suffer in Jan, nor Feb, but after 1 week of everyday headaches, my worst nightmare came back on 2nd March, with 3 attacks... I fear im in for a tough month. This year, i avoided long days in daylight , I thought i had found the trigger for Jan.

Has anyone had delayed attacks from Jan, i notice most sufferers say this is the worst time also.


Posted in Steroids on 16 Jan, 2012 - 4:12 pm

Hi chris, sorry misunderstood, its 25 mg. cheers


Posted in Steroids on 16 Jan, 2012 - 1:44 pm

Hi chris, 2 daily for 3 days, 1 daily for 3 days and half daily for 3 days, so its not for very long. Thanks sara, i will check out link. Cheers katy


Posted in Steroids on 16 Jan, 2012 - 12:33 pm

After another 3 attacks in 12 hours, the doctor has put me on prednisolone to try stop the cycle and pressure build up, has anyone used this before?


Posted in Time of year on 14 Jan, 2012 - 1:19 pm

Interesting? Ta


Posted in Time of year on 14 Jan, 2012 - 11:02 am

I read on another site, that CH's commonly occur in jan and july due to being longest and shortest days of daylight, can anyone add to this claim. Because its always jan for past 10 years and around mid year. Thanks katy


Posted in New to site on 14 Jan, 2012 - 10:55 am

Thanks for the posts everyone! It makes me feel at ease that im not alone. Sofar from 2-3 Ch a day, last night i got 1 only and only rating 3 for pain, i could soon enough fall back to sleep. I believe it was from getting fresh food, avoiding smoking especially, even more reason to quit. Katy


Posted in New to site on 12 Jan, 2012 - 9:12 pm

Hi, im katy, 33 yo female from melbourne. Im in a cluster cycle at the moment, been 1.5 weeks with up to 3 attacks a day, lasting 2 hours each. I found out i had CH about 10 years ago, and was intially triggered from gym, 5pm after each session! It was so unberable, i truly thought in was going to die. Luckily my doctor had come in contact with CH sufferers and when i explained the all of a sudden, right eye watering, eyelid droop and intense pain behind eye running down my sinuses, blocking my nose and down my neck, she said i was a unlucky and rare sufferer of CH! I notice they come on from gym workouts especially, which is tough when you want to stay fit and a healthy weight sad during a cluster, there is more and more triggers, as fish, which is a newby for me, i get a CH immediately, which i never noticed In the past 10 years. I cant take tablets as i vomit, so having imigran nasal spray, but i have to take this soon as eye starts to water so duration is less. I think what gets on nerves, is the good things i have to cancel, nights out, as i know at 12, i will get one, so i feel like im letting people down and most dont really understand what im going through sad(