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Cluster Headache Diaries

Cluster Headache Intensity Scale

  1. Slight twinge of the CH type of pain. Shadows.
  2. Normal headache type of intensity. Annoying, but life is still beautiful.
  3. Shadows are getting constant but can deal with it.
  4. Higher level of pain than normal headache. Interferes with normal life.
  5. Starting to get bad, want to be left alone to deal with it.
  6. Need to pace and move and drive your fist into your temple.
  7. Major non-stop pain, left feeling exhausted after it finally leaves.
  8. Immense paid, time to yell, bang head, rock, whatever works. Fear that it won't stop.
  9. The "Why me?" syndrome starts to set in.
  10. Screaming, head banging. Hospital trip. Depressed. Suicidal.

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zara chappell's CH attack diary

zara chappell's Profile

Monday 08 June, 2009: midday - 12.40ish


I felt one starting as the TEGRETOL was wearing off (200mg tabs) so took another, went and lay down with icepak and was just moaning on the bed, then felt the TEGRETOL kick in and it subsided, so got up, had to go to work tonite, thought I would try and see if I could work with them (last time i didnt for 4 weeks) while using the TEGRETOL, felt ok, managed to work (Bowling Alley), took another TEGRETOL at 7pm to ward of any attack from happening at work, now 20 to 11pm and feel semi ok, just feel the shadows of one there, but no pain thank god!

Sunday 07 June, 2009: 11.45pm - 12.30am


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.

Above period: 2 Attacks over 2 days.

-- Period of remission (109 weeks, 4 days) --

Wednesday 09 May, 2007: 7.30ish - on and off


Ok well, this is my last nite of the CH's been 4 weeks as of tonite, but as being on TEGRETOL i havnt had any real ones since taking it, today i had pain in my head this morning, but nothing as severe as a normal drug free CH - YAY to that, been eating choc lately too, didnt feel like it while having the BIG attacks, but since taking Tegretol i started to feel like it, usually i eat a bar a day - im a woman i wont be doing another diary till they come back to haunt me again and then i will get straight back onto the Tegretol as its been a god send, not to have that extreme pain and the screaming and writhering in bed, waiting for it to build up to its cresendo then slowly go back down and disappear, i hope those days are now behind me as far as extreme pain goes and tegretol continues to good luck to e 1 else and if u really want relief you will give Tegretol a go and not PUT UP with the pain of them :)Z

Tuesday 01 May, 2007: never -


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.

Friday 27 April, 2007: today - today


YAY i love Tegretol, I am still CH free, just a slight pain down the side of the face and in the top of the head, they are wanting to come out but they cant!!! hehe... 2 FULL nites sleep - never b 4 had that during my CH period. I cldnt be happier, sure the drug makes me slightly dizzy like my equilibrium is out of balance, but big deal, i dont have the attacks!! Its a godsend

Thursday 26 April, 2007: now -


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!!

Thursday 26 April, 2007: 8pm -


OK Every 1, well i am still here, havnt gone anywhere, havnt had any bad effects from taking Neuroutin, in fact the opposite, it has worked, I am not getting CH's as such at the moment, i am getting pain down the side of the face, but that pain is on the scale of a 2-3, what a relief NOT to have the full on clusters burning my brain and making me wonder if my brain will explode, cause thats what i think, that my brain will, or an Aneurysm will explode and my daughter will find me dead. Also my other doc - seeing 2 cause sometimes one isnt avail when another is - and basically they are both as bad as one another - well this other doc said to try tegretol - as it has been more proven against Trigeminal nerve pain (than Neuroutin - cheaper too)- (its also an epileptic drug)- so i thought Ok i will, when you REALLY have CH's u will try anything, so i switched to TEGRETOL and had my first CH free nite last nite, well the last few nights i havnt had CH's (since taking Neuroutin/Tegre.) but just been woken by pain down the side of my face - bad enough to need an icepak (wrapped in a teatowel - dont put it straight onto yr skin!) but nothing as severe as a CH attack - PHEW . Now tegretol and Neuroutin are nerve blockers, they block the nerves from sending pain messages to the brain - and well thats what we want - we want to block those nerves and now i have found a drug that works, so Every 1 out there in CH land - go to yr doc explain that you want tegretol for TRIGEMINAL Nerve pain, he will start you at 300mg twice a day and i find that is enough. Also my head isnt boiling as much now or my neck and my hair doesnt feel like barbed wire even when i have the pain down the side. YAY for some relief!!!!!

Friday 20 April, 2007: arvo -


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.

Friday 20 April, 2007: 7.30pm - 8.20pm


had my daughter in the bath and got an attack, poor kid had to get herself out, feel so helpless, wish i had family living here....

Friday 20 April, 2007: 2.40pm - 4.45pm


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

Friday 20 April, 2007: 1.30ish am - all nite


went to bed, woke up around 2 i think and had a few that lasted on and off all nite - not as severe but there all the time, one finished next one started, by 7.30am i cld get up

Thursday 19 April, 2007: arvo -


did some research today, there HAS to be SOMETHING that can help these...found a link between Epilespy and 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

Thursday 19 April, 2007: 7pm - 8.20pm


a bad one with no meds this time, poor 5 yr old had to witness it and get me ice paks and put herself to bed...hated her hearing me scream and moan in agony, wonder no one outside heard and called the police thinking i was being attacked.. been over an hour now but i feel yuk,.. thank god i have 4 icepaks...dreading tonites bedtime one

Thursday 19 April, 2007: 7am - 7.20


managed to abort this in 15 mins - yay, felt so good to finally have a real quick one..could take daughter to school.. managed to get some food from supermarket too

Thursday 19 April, 2007: 2.30pm - 3.20pm


wanted to go pick up daughter from school, but the devil came back to visit..dam.. felt soo bad, dont think Nasal Spray worked

Thursday 19 April, 2007: 12.40am - after 2am


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...

Wednesday 18 April, 2007: 6.30ish - 7.30


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

Wednesday 18 April, 2007: 1am - after 2am


had a bad one, was in bed maybe like 10 mins when i felt it coming, spray again didnt work, neck and head boiling hot, there IS a link to the brain stem/spinal cord as neck and shoulders feel out of place and area is boiling hot to touch as is top of head all the time during the cycle

Wednesday 18 April, 2007: 12.45pm - 3.30pm


well this was a double one, first attack lasted till 2pm, got up made ph call then another one started within 3 mins, (so much for getting daughter from school again..she can miss next 2 days - cant keep relying on friends mum) - pain was bad - screaming, crying, writhering in sux

Tuesday 17 April, 2007: 1am - 2.30ish


go to bed to await my fate as the demon comes out...tues morning and dread not being able to take daughter to school, but i do after just one during the nite, imigran nasal spray not working much or tabs due to the fact i have cold like symptons too or/and blocked sinus - love my icepaks :/

Tuesday 17 April, 2007: 1.30pm - maybe 5.30pm


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

Monday 16 April, 2007: dont rem - dont rem


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

Monday 16 April, 2007: 1.33am - after 3


again dreaded gng to bed and the reason why was clear - yet another attack, progressively getting stronger as the week(s) go on

Sunday 15 April, 2007: 7.10am - 9am


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

Sunday 15 April, 2007: 1.30am - sometime after 3


as usual another one started after i had been laying in bed 30 mins + eventually pain subsided and i fell asleep ...thinks There MUST be a cure somewhere

Saturday 14 April, 2007: hanging in the backgr -


i hate this - its too soon, usually comes every 2 yrs - most times around july, y now its too soon - what did i do to deserve this? - y does my brother get them too? they also seem to come when i have cold like symptoms. My 5 yr old hates it when i get these, she gets upset as we cant do anything for 4 weeks, now she has started school, she is upset she cant get to school, as i have no way of getting her there or picking her up while i have these. Even now i have the CH shadow hanging in the background, waiting for me to fall asleep so it can come out and haunt me. Have tried oxygen - didnt work, acupunture -didnt work, predisome - didnt work, zomig - didnt work, i found only imigran (sumatriptan) nasal spray to be the most effective. Tried to ring the guy in the UK peter goadsby but hes away till monday, will ring back - he is the head of neurological hosp in UK, u can read his interview on this site. I want to know if he has anything that will cure/take the pain away, will let you know if i do get to talk to him and what he says. Scared to go to bed - yet im exhausted - i knwo it will happen when i lay down, have tried sleeping sitting up - makes no diff.

Saturday 14 April, 2007: 7.15am - unsure fell sleep agai


it woke me up when it started took a imigran tablet as i do everytime i feel an attack starting, pain was bad enough that i cant keep still in bed, thrashing about, wriggling, chanting, only have 2 sprays, saving them for the very severe ones that will come soon, as my 4 weeks have just started and cant get to my doc till mon arvo

Saturday 14 April, 2007: 4.33pm - 6pm


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

Saturday 14 April, 2007: 1am - unsure, fell asleep wh


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

Friday 13 April, 2007: 3.30pm - 5.30pm


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

Friday 13 April, 2007: 12.30am - 2am ish


i hate this, 1 hour after falling alseep they start and wake me up with the pain, take a tablet but to no avail- we need a cure, 28 more days of hell - moaning and go into a trance like state saying 'go away' 'go away'

Thursday 12 April, 2007: 4.18am - 5.33


the devil is back - sooner than it shld be, meant to be every 2 years, not 8 months since last attack july 06, i am dreading the next 4 weeks of hell

Thursday 12 April, 2007: 2.30pm - 4.30pm


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