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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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Roly's CH attack diary

Roly's Profile

Thursday 11 April, 2019: 12:00am - 12:00am

1

Good sleep, and good day.
Slight shadows all day, but barely enough to notice.


Wednesday 10 April, 2019: 09:30pm - 10:05pm

5

Came out of nowhere, (not unusual), took Maxalt, and warm shower. Rose to about a 6 before dissipating shortly after 10. Afterwards it felt like only 10 mins had passed, but was surprised to see was just over half an hour. Shadows remain but hopefully can get some sleep... Early start tomorrow morning :/


Wednesday 10 April, 2019: 08:00am - 03:00pm

1

Mild shadows today, though nothjing I can't handle.
Slept well last night when I finally got to sleep around 2:30am.
Had a "normal" headache most of the day, seems mild but likely because compared to a CH it's next to nothing. Took Excedrin and has taken care of most of it.


Tuesday 09 April, 2019: 11:00am - 12:00pm

8

Heavy shadows compared to the last week.(#4)
11am felt big one coming (#8ish). Took Maxalt, warm shower, 10mins later gone completely, then 11:45 shadows varying between a #1 & 3
13:30 nothing at all, no shadows even.
Shadows then started about 16:00 at around a 1-2.
Will see how tonight progresses........


Monday 08 April, 2019: 12:00am - 11:55pm

3

First day on 1/2 dose of Solone. Can feel the shadows getting a bit stronger, but nothing I can't deal with fortunately. I am worried this may be a sign that the Verapamil dosage by itself without the Solone may not be high enough.
Another good night sleep though.


Sunday 07 April, 2019: 12:00am - 11:55pm

3

Since beginning on the other medications, (Vera & Solone), I havent really had a full blown CH attack. Although I have had almost constant shadows ranging between 2 and 3. Compared to what I was experiencing before, this is a godsend. I haven't taken any more Maxalt since the first day. I have just been dealing with it quite well for the last week.
First full night sleep for weeks!!


Monday 01 April, 2019: 12:00am - 12:00am

9

Just found this wonderful site. Quick backstory: 4 years ago (almost to the day) this started. I thought was a tooth/teeth problem. Dentist found nothing, GP had a ct scan done and noted small abnormality in my right sinus. (Side of my CH). Gave me some steroid based nasal spray to take 2 or 3 times a day. Cannot for the life of me remember what it actually was. Over the course of about the next 2 weeks (by this stage had been ongoing for about 6 weeks, but I lived remotely about 600km from Adelaide) it went away. I thought no more about it. Suddenly the other week, it came back from nowhere. I went back to the GP (different one, closer to home), and he basically told me to take panadol, and get some Rhinoocort as he didn't want to prescribe anything stronger. After another week and a half, it was totally unbearable, 2 to 3 every day at about an 8-9. Went back to my dentist who suggested possible Trigeminal Neuralgia and prescribed Carbamazepine. I went back to my GP with this information after a couple of days when it wasn't making any difference (although it did help me sleep), and he immediately reffered me to a local Neurologist here in Adelaide. Yesterday evening I was out for dinner and had the worse attack I think I've ever had. I was on the floor in the rest room and couldn't get up, and barely move, (apart from rocking and crying, so embarrassing as I'm sure most of you have been through). Both top and bottom right jaw, temple, and eye like someone was putting nails into my head. I had to get my friends to help me up after about 45mins and take me outside whilst my other friend went and got the car. Lasted for about 4-5 hours at a #10. Today I got a call the neurologist had an opening and could see me that day. I jumped at the chance! He did some quick tests, and asked me a million questions, then basically described exactly what I was going through, including some things I hadn't thought to mention. Wow, I was so relieved that someone knew what I was going through, and had expertise in dealing with it. He prescribed Solone, Verapamil, and Maxalt. Solone 25mg/day for 5 days, then half dose for 5 days, then stop. Verapamil 80mg 3 times a day, and Maxalt when necessary. That afternoon / evening, I had a big one start (about an 8) but I was still at work so I hadn't had a chance to pick up any medication yet. Luckily I work at a hospital and earlier had put my prescription in at the chemist on-site. I staggered into the chemist to collect the medication, went and sat down and took one Maxalt. Within 15min, all traces of the CH had gone YAY!!
I started on the others the very next day,
Mine always start as a feeling of a bad toothache on my top right jawline, then progress up to my right temple and only slightly behind my eye.
I find the best at night when I get one is for me to go outside in the cool, fresh air and the dark, and have a cigarette..... I presume the nicotene may be constricting the blood vessels and helping? So much for cutting down on the cigs...
I have also gone from 3-4 cups of strong black coffee / day to about 10-12. I will be bringing this up with my neurologist the next time I see him. (Likely in 2 weeks time).


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