If you are a sufferer, then you know what these members are going through.
Click a member's name to view their Cluster Diary.
| 14/07/2010 -- 11.45pm - 12.30am |
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| Well the EVIL has returned 2 years on, roughly 2 years ago i had them at this time, so they started tonite, was working all day and had slight runny nose, didnt think anything of it, sitting at comp during the evening, neck area felt itchy and hot, legs were cold, but i was warm, then it started in the jaw, i thought toothache first, then it moved into my temple and eye, this wasnt a severe attack, took 1 pan. forte and imigran nasal spray and ice pack and went to bed, was gone by 1, tossed and turned trying to sleep, legs were restless, I couldnt get comfortable, dozed i think, then at 5ish i got another so took my TEGRETOL and icepack and nasal spray and attack was a little more severe till the TEGRETOL kicked in, then managed to sleep till 8.45am. I RECOMMEND TEGRETOL to everyone who has these, it stops the brain getting the pain messages so u dont feel the pain, it may be there as a dull ache, but not much else. |
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| 14/07/2010 -- never - |
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| 1
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| Well here i am still CH free, but still have the pain down the side of the face..small price to pay to get rid of the CH and besides 1 dose/snort of the Imigran Nasal spray gets rid of that pain for the day, just a pain to wake up with the facial pain, but oh well.. small price to pay...still getting full nites sleep, thats a blessing, and i have a semi life, not back at work cause i dont think i could yet, as my job is dealing with the public for 8 hrs, and kids, but next wed they should be gone, 4 weeks will be up, so YAY to Tegretol. |
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| 14/07/2010 -- now - |
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| 0
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| Oh and in case anyone is wondering, no i am not over my attacks, i am mid cycle, they always last 4 weeks, was 2 weeks last nite, so its the drugs working not them just 'going away'
Also the first time you do take any one of those drugs - you will get real drowsy and your head might feel funny, you CANNOT drive or work, but i suggest you fight the urge to lay down and sleep, do something, anything it will pass ...I also got little shock like feelings down the side of my face after taking the first one, maybe thats it working, but since then been fine...But i am by no means 100% fit and healthy, i just dont have the pain, but have the feeling something isnt right in the head, so take it easy, dont conquer the world cause you wont be able to, just rem. the drugs act as a bandaid for the clusters..YAY to my discovery!! |
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| 14/07/2010 -- arvo - |
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| 0
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| went to docs today - got Neuroutin - not cheap $80 for 100 tabs, praying this is going to help, i want my life back, start taking them tomorrow when chemist gets them in for me, also got a private script for Imigran nasal spray, but its expensive ($28 for 2 sprays) as not covered under the PBS as Neuroutin isnt either. |
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| 14/07/2010 -- 2.40pm - 4.45pm |
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| 10
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| had a double whammy, 1 then another after it, where i totally lost it,my daughter has been changing my ice paks and cause i got a double attack i asked for another cold 1 (i hve 4) she still had the 2 in the lounge so there were no cold ones, so i got up [screamed and kicked eveything in my path so hard things went flying (her toys), i cldnt control it as icepaks are the only relief i hve, the pain is so unbearable, felt so bad after but when u have it this bad u just need relief ASAP and want nothing to stand in yr way of getting it
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| 14/07/2010 -- arvo - |
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| 0
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| did some research today, there HAS to be SOMETHING that can help these...found a link between Epilespy and CH...am thinking a drug called Neuroutin which stops the neveres sending pain messages to the brain will work...gng to speak to doc tomorrow as i have appt. letz hope i can make it |
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| 14/07/2010 -- 2.30pm - 3.20pm |
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| 7
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| wanted to go pick up daughter from school, but the devil came back to visit..dam.. felt soo bad, dont think Nasal Spray worked |
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| 14/07/2010 -- 12.40am - after 2am |
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| 8
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| the usualy nightly one! - tried to speak to Prof Peter Goadsby in the UK, left message with his secretary to ring me, hope he does or at least makes contact, he has my email addy, hes an aussie Dr who is leading the study in CH's.. will wait... |
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| 14/07/2010 -- 6.30ish - 7.30 |
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| 8
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| had another one - but got rid of it so cld take daughter to school, sometimes during an episode maybe halfway the head feels so light, and there is no pain - like yr in a tunnel - might just be for 1-2 mins then it hits again hard |
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| 14/07/2010 -- 1.30pm - maybe 5.30pm |
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| 9
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| went to docs to get script, attack started at docs - YUK, was gng to walk out but they gave me icepak, i was in agony in waiting room, saw doc and he says GL with them - like GL geeez, when people say that its so god dam annoying, need a head transplant - now that wld be luck, had to drive home with attack - worse thing to do - made it home, got someone to pick up my daughter from school and at 5.30 she woke me up saying she was hungry and cld i cook dinner - shes 5 - poor kid i feel so bad for her too - had the CH in the background all nite after that, eventually went to bed at 1am |
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| 14/07/2010 -- dont rem - dont rem |
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| 0
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| last few days have been bad, hence no log, got to think back now to monday as its wed nite, i prob had one in the afternoon or evening not sure |
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| 14/07/2010 -- 7.10am - 9am |
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| 8
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| woke with one starting, got up to get icepak and there was my daughter on the couch, told her to go back to bed its too early to be up, grabbed icepak got back into bed, she came in wanting a cuddle, i cldnt i was in agony, she left crying, i felt bad - saw her on the couch watching me in agony, poor kid, she doesnt understand, at some stage she got her blanket and lay on couch just watching me in my room....i pray it doesnt last 4 weeks, dont know how i can handle looking after her by myself - no family around me |
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| 14/07/2010 -- 4.33pm - 6pm |
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| 7
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| was sitting watching TV and it started, took tablet straight away, maybe they are reliveing the intensity somewhat i dont know, but grabbed my best friend - the ice pak - and lay down in bed, hateing the searing pain, wanting it to all go away. still have the shadow of the CH all evening and day, totally worn out.. now 20 to midnite, knowing its gng to happen again soon..i just want my life back, 25 days left of them |
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| 14/07/2010 -- 1am - unsure, fell asleep wh |
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| 7
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| tried not to go to bed, but got a CH start sitting at comp so had to go, funny how sometimes during the attacks the pain seems to go for like 30 secs then comes back again..finally i fell asleep with icepak on side of face was drained after chanting 'why me' and 'go away' i sometimes can take the pain away by thinking of soemthing taking myself to some place else, but doesnt last long |
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| 14/07/2010 -- 3.30pm - 5.30pm |
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| 6
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| at work it started had to leave and drive home, again not a good idea, finally got home - longest 10 mins - bed and icepak - took tablet at work but usless, we need the 100mg ones like the USA has, they work quick, a friend gave me some to try, tried to get inside the pain it sometimes eased then came back in bouts |
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| 14/07/2010 -- 2.30pm - 4.30pm |
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| 5
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| started when i was at the zoo, dam, had to drive home -25 mins, stopped to vomit twice, dont usually vomit, i think the sun and concentration was the cause, didnt actually vomit anything, finally got home to bed with icepak, imigran tabs arnt working very well |
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| 14/07/2010 -- - |
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