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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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JackyV 's CH attack diary

JackyV 's Profile

Tuesday 20 October, 2020: 08:15pm - 09:00pm


Got the starter twinge about 8.15.
Maxalt wafer used around 8.20.
Pain increased gradually to a 4 and stayed constant there until 8.45ish, gradually tapering off.

Monday 19 October, 2020: 12:25am - 01:00am


The beast returns.

Been small shadows over the last week but this truly announced the return. Woken just before 12.30 am, starting at 4 and up to 6 quickly. Maxalt wafer used, going to need to reorder my medical oxygen.

Here we go again. Fuck.

Above period: 3 Attacks over 2 days.

-- Period of remission (52 weeks, 5 days) --

Wednesday 23 October, 2019: 11:45pm - 12:30am


Shadows/twinges started off as I settled getting ready for sleep. Popped a naramig tablet with my nightly dose of D3 and fish oil, as I'm not prepared to see if this was going to be a low level attack or not.
Naramig aborted well.

Wednesday 23 October, 2019: 07:15am - 08:00am


Woken up to the twinge. Within 5 minutes of being awake I was up to a 6. By the time I walked downstairs to get my imigran I was at the 7 mark. Another few minute in and I'm a contorted ball, whining and crying. Worst attack I've had in a while. Oxygen ordered today.

Tuesday 22 October, 2019: 05:00am - 06:30am


Attack at work. Took a naramig tablet as soon as I felt the twinge. Managed to take 15 minutes in a quiet room with cold air blowing on my head to breathe through it. Tablet worked quickly and aborted. Absolutely exhausted at this point.

Tuesday 22 October, 2019: 02:30am - 03:00am


Have been having attacks once every two days, one day two in 12 hrs, haven't stopped to log them.

Severe headache this morning woke me an hour or so after falling asleep. First use of imigran in 18 months put the beast back to sleep within 20 minutes or so. Depression setting in. Sleep anxiety becoming real.

Above period: 4 Attacks over 2 days.

-- Period of remission (78 weeks, 1 days) --

Monday 23 April, 2018: 01:00pm - 01:30am


Daytime attack at work. Painful enough to be distracting, so gave myself a shot of imigran spray. Tapered off around 15 mins later.

Monday 23 April, 2018: 03:40am - 04:00am


Wakey wakey, your head's getting stabbed! Normal procedure, ice, pacing a bit waiting for the imigran to work. Did its job in about 15 minutes and I went back to sleep for an hour before needing to get up. Hopefully I have figured out I can take my indomethacin late, just before bed, then wake at around 2am to take another dose to prevent the 4am headache.

Sunday 22 April, 2018: 03:00am - 03:30am


Woken again. Took a dose of imigran to try and get restful sleep. Worked very swiftly and back down within half an hour. Feeling absolutely wrecked today. Anxiety about sleeping setting in.

Thursday 19 April, 2018: 06:00pm - 07:00pm


Unexpected attack. Shot of imigran took longer to work than normal. Not overly painful.

Thursday 19 April, 2018: 04:00am - 05:00am


Cluster alarm went off an hour before my normal alarm. Shot of imigran as soon as possible. Stayed up resting rather than trying to sleep again for fear of a repeat attack. Becoming fatigued.

Wednesday 18 April, 2018: 01:00pm - 02:00pm


Shadows becoming minority bothersome, faded quickly enough to not be a concern.

Wednesday 18 April, 2018: 01:00am - 02:00am


Another waking headache. Tried to fight it with aspirin and ice cubes. Gave in after 20 minutes and used the imigran. Managed to get back to sleep within the hour.

Tuesday 17 April, 2018: 12:00pm - 01:15pm


Started up the indomethacin regime today, preparing for the next 4-5 weeks of potential hell. Got a twinge just before my midday dose. Thankfully no need for the imigran today. No impact upon my duties at work.

Tuesday 17 April, 2018: 12:50am - 01:40am


The real feeling of when a new cluster bout has set in. Woken by a fairly nasty attack. No imigran in the house tonight. A big slug of aspirin to try and shave the edge of doesn't help. End up writhing on the floor with ice pressed to the skull and face mashed into the floor. A short episode, thankfully.

Monday 16 April, 2018: 11:00am - 11:30am


First cluster of what is my new cluster period in nearly a year. Got the twinge driving a machine at work and it intensified quickly. A shot of imigran aborted it quickly, allowing my day to go normally.

Above period: 10 Attacks over 8 days.

-- Period of remission (48 weeks, 4 days) --

Thursday 18 May, 2017: 11:00am - 12:30pm


My day of rest has been invaded by the beast. Same onset as earlier today. Woke up at 11 after getting another few hours sleep. Immediate and BRUTAL onset. No sumitriptan left. No anything left. Aspirin is all I have in the house. Slug some down in the weak hope it will save me. It doesn't. Crying, pounding my skull, icecubes to the temple, pressing my head into furniture, nothing offered relief. I finally got enough of a break to put some clothes on and make it to the local chemist and refill script for sumitriptan. Finally finding relief.

Thursday 18 May, 2017: 05:00am - 05:30am


Another event of the CH event beginning as soon as I opened my eyes. This varies from my normal onset of being woken by the CH, not it beginning when I wake from my alarm.
Pain up to a 6 within 2 minutes of climbing out of bed. Sumitriptan administered within 10 minutes. Pain still got really bad before ramping off around 5.25. Left weak, exhausted and emotional. Decided to take the day off work to rest.

Wednesday 17 May, 2017: 06:30pm - 07:00pm


The twinge evolves. Felt the niggle around 6pm, thought nothing of it. Sudden, intense onset around 6:30 left me scrambling for the sumitriptan. Allowed it to work for 15 minutes and attack was all but gone by 7. The pain got bad fast.

Wednesday 17 May, 2017: 05:00am - 06:00am


Same again as monday. Awoke to the twinge, slugged down the aspirin and went about my normal morning. Made it off to work half an hour late after the twinge disappeared.

Monday 15 May, 2017: 05:00am - 05:30am


This week marks the return of the beast. Monday's alarm for work was met with the twinge moments after opening my eyes. Slugged down some aspirin, twinge went away after around 25 minutes.

Above period: 5 Attacks over 4 days.

-- Period of remission (21 weeks, 3 days) --

Friday 16 December, 2016: 05:00am - 05:30am


Woke up for work this morning just before my alarm. Turns out my CH alarm went off instead. Got up and showered, shadow starting to intensify. I decided to not risk losing the first few hours of my day, and sprayed an imigran shot up my nose. It seems to have worked, the intensity ramping off rather than on like would normally happen. The taste of the imigran spray hitting the back of my throat nearly caused me to vomit though, awful. This attack follows a test of having a drink last night to see if my Indocid regime is working. It seems the Indocid is effective enough to prevent an attack, even if alcohol is consumed. I imagine the dose had worn off by 5am though, having taken it at 7pm.

Sunday 11 December, 2016: 04:15am - 05:00am


Woke from a dream involving some sort of strange pain from an attachment to my head. Turned out I was being awoken from a real life head pain. Took me a few minutes of trying to fall back to sleep to realise that it was a cluster. Not the worst, but frustrating as I had to be up early today. Dumped 2 ibuprofen and 2 paracetamol because I didnt want to spend half the day doped out from maxalt. Ice cube to the head for 20 minutes or so helped, around 5am managed to lie back down and get some more sleep. This bout of clusters has picked an opportune moment, right before I start my end-of-year holidays. What a way to spend them.

Saturday 10 December, 2016: 05:00pm - 05:30pm


After a short remission, it seems my CH is back. I've had a couple of shadow events that have lasted only 10-15 minutes in the past week. Today made me grab one of the two maxalt wafers I have on hand. It worked quickly, aborting the CH within 15 minutes or so, but left me drained, anxious and depressed. Spent the next three hours curled up in bed, with my body feeling like it was made of lead and full of sad. I'll fill my prescription for Imigran tomorrow, hopefully the side effects are much more manageable.

Above period: 3 Attacks over 2 days.

-- Period of remission (17 weeks, 4 days) --

Tuesday 16 August, 2016: 08:50am - 09:40am


Took the day off work because I was exhausted due to going to bed late and last nights waking attack. So, the beast decided I needed another round to punish me. Woke again not long after 8.30ish with the twinge which lasted for maybe 15 minutes until reaching full intensity which lasted almost an hour... Gotta be reaching my dose limit for aspirin today.

Tuesday 16 August, 2016: 01:30am - 02:15am


Waking attack. Fairly "mild" in terms of intensity. Six aspirin and icecubes to the temple made this a less terrible experience than usual. Didn't spend more than 10 minutes pressing my face into the floor. Sitting in the cool night air seemed to help somewhat.

Tuesday 09 August, 2016: 10:30pm - 12:30am


Waking headache. Went to about a 5 after 15 minutes, then seemed to subside, thinking the aspirin and ice cube treatment had worked, I went back to bed. About 5 minutes after laying down, I was thrown back to hell. I had to leave the bedroom because I couldn't hold back the sounds I needed to make anymore. Grunting, groaning and whimpering on the floor for about an hour and still no reduction in intensity. I managed to get outside to sit in the cool air for about 30 minutes, until some relief came from using the ice cubes on the back of my neck and temple. Another 15 minutes of tamping down and I was out like a light, exhausted and drained.
Woke up sore all over, from tensing my body no doubt.

Saturday 06 August, 2016: 01:45am - 02:30am


Woke at just before 1:45. Pretty intense right from the get go. Straight to the aspirin, as I haven't refilled my script for maxalt. Grabbed an ice cube and sat upright in bed moving it around the right side of my head for what felt like an eternity, fighting the urge to cry out. Had to get up and go and collapse and writhe on the loungeroom floor for about 20 minutes until the intensity settled and I could stop groaning and whelping. Managed to be pain free after 45 minutes, which is pretty normal, but the ice cube helps to lessen the pain. Got a referral to a neurologist this week, hoping for some real relief soon.

Friday 22 July, 2016: 02:30am - 03:30am


Woke up with the twinge... Couldn't get back to sleep immediately which is standard warning sign for me. Grabbed the aspirin I'm leaving beside my bed and downed 1800mg dissolved in water immediately. 10 minutes on and it was in full swing. Not the worst I've had, but uncomfortable enough that I reached for my first maxalt wafer ever within 20 minutes. Got up and paced about the kitchen with an ice cube applied to my right temple, went back and rocked on the bed for easily another 20 minutes whilst the beast did its thing. I don't know if the maxalt helped, but it ramped down fast about 3.15ish and I was able to lie back down and was asleep after checking the time around 3.20-3.30.
Dashed a hope for aborting this bout with psilocybin as I was headache free last night.

Tuesday 19 July, 2016: 09:00pm - 10:30pm


(Sorry for the long entry, being my first I thought I'd add some history)
This was a sneaky bastard, and the worst I've ever had to date.
After self medicating with psychedelics, which has proven effective previously, but not recently, I am going through hell this past week. I've had a CH every day, with a particularly bad waking one two nights ago.
Last night was emotionally and physically hell. During an intimate experience with my partner, I felt the twinge.
Being distracted enough until thing concluded, it was like a sledgehammer to the head.
Instantly sprinting for the aspirin, but nothing was stopping this one. Within minutes I was curled into a ball, screaming and crying out of sheer agony and frustration. Forgetting to breathe, and combining the blocked nose, I bled for who knows how long out of my right nostril, soaking the mattress with blood.
After realising, I cleaned myself up and retreated outside to the cool night air, still no lessening of the pain. I was curled with my arms wrapped around my face for easily half an hour until the intensity started to reduce, finally making it bearable enough to go and lay down and try and rest (being 10pm, having work at 6am). For another half hour or so I laid and rolled around whilst the intensity ramped off until I passed out.
My partner felt emotionally distressed particularly for this one, as she's never seen me have a bad attack. Feeling futile and helpless was hard on her.
Yesterday marked the day I have finally found a doctor who is taking me seriously, and I've got to humour him to go through the pathologies to discredit any other theory that he may have before I get a medical diagnosis of CH.
Fingers crossed.