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Roadie last won the day on January 3 2018

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  1. I tried never to get too cocky about the fact that I'd been in remission for a long time. 14 years without a full-blown CH attack and no more than a 4-week bout of shadows in an 11 year period. Sadly, in spite of my humility and decade of near-complete remission, the shadows came back with a vengeance last June. Still no full-blown attacks to date but not sure how. The shadow bout is now 9 months old and has ramped up really badly in recent weeks. I have days like today where I constantly feel like attacks are trying to start. I'm using 480mg of verapamil but am not sure that it's doing
  2. Hi Bilal, I’m sorry that you’ve had to find your way here, but welcome anyway. Certainly, what you’ve described does sound like CH and quite similar to how I remember mine starting. I was 18 when mine started. I was woken from sleep one morning with a horrible piercing pain behind my right eye that I just couldn’t ignore. It probably only lasted 15-30 mins and then I went back to sleep. Another one struck during the day a few days later. They became more frequent but then died away within 2-3 weeks. My first few bouts were always like this. Your doctor so
  3. I've been having shadows for 8 months now following a remission of 11 years. I also get a blocked right nostril, which in itself is can be very painful, both while it's happening and once it's cleared because it all feels inflamed. I haven't had a full CH attack in the whole 8 months. I get periods where it improves for a few days and others where the shadows are dreadful for a while. I've been through this many times since around 2000. Prior to that, I went through 7-8 typical episodic bouts of CH. Since I started having these shadow bouts, I've only had 5-6 full CH attacks and some ext
  4. Also extremely sorry to hear this. I know your disappointment! Though it sounds like you've had it far worse than me in the past. I've also enjoyed a long remission - almost 14 years without full CH attacks (and counting) and 11 years with virtually no CH "activity". In my case it seems that the nerve, or nerves affected by CH have become active and give me daily shadows, pains and other unpleasant symptoms without any full-blown attacks to date. This started in June last year so I'm seven months in and every day I'm convinced the attacks are starting. I believed CH was a thing of the
  5. Hi Peggy, I know what the rule book says about HC but the condition was only recognised in the past 30 years so who's to say the rule book is definitive? I haven't even spoken to another CH sufferer who has pain all day for several days at a time. That doesn't mean it can't happen - I've just never heard of it. But HC is supposed to be continuous with no relief unless the sufferer goes into remission. My headaches were textbook CH for the first 11-12 years. If you looked at it over the past 7 months, it looks much more like HC, but I do get breaks in the pain. Today
  6. I've always believed that CH was strictly unilateral. My attacks always start with a pain behind my right eye. Pain between the eyes is something I've never heard described and I've been talking to other CH sufferers for 20 years now. I'd accept it if somebody said the pain had spread across the forehead during a bad attack, but for an attack to start in the centre of the forehead is certainly unusual. Hemicranial continua is also meant to be a unilateral pain, but hey, I'm no doctor as they say! I've also suspected this in my case but I've actually had pain free periods during all of the
  7. I think the confusion arises from two things - firstly, I had definite bouts of ECH for at least a decade. Secondly, I have pain-free periods, albeit fairly short and infrequent. The other problem is that I have acid reflux so they will need to do an injection for an indomethicin trial and I have quite a long journey to my neuro. We were waiting for a bad day, then the pain improved for a few weeks, then Xmas happened, then verapamil was chosen as the first drug to try. I agree that we might need to go back to square one. Whatever I've got doesn't fit the HC description perfectly, but at
  8. Some days you'd say yes. For much of the past 6 weeks you'd say yes. But yesterday, for example, I found myself virtually pain free for a large part of the day. Last night I was completely pain free for at least half the night. My neuro says it can't be HC if I get any pain-free periods. I think they should try indomethicin anyway, just to rule it out.
  9. This is an interesting description of CH. My CH always started in the same ways as described above. I'd get struck during the night. My first thoughts would be "No - no way! "This can't be happening out of the blue like this... again". And then I'd have to come out of denial and deal with the attack. My attacks always began with an uncomfortable feeling behind my right eye that I just felt I needed to get rid of. But I could do nothing to stop and and it would rapidly get worse. Normally, within ten minutes the attack would be excruciating. Back before I knew what my headaches were, I'
  10. Hi, many thanks for this, CHF. I wonder if you can get anything like this in the UK? I'll read the threads. I also had an ONB injection back in 2006 but it didn't seem to do anything. The problem is that, like now, I wasn't having attacks then. Just horrible incessant shadows. There's no doubt that my CH has changed in its nature over the past 15-or-so years. The question is, has it changed into something else and what will work for it now? Currently having no joy with verapamil.
  11. Please, whhat is a Jesus Shot?
  12. ...while we're on the subject of strange symptoms... I'm in a bout of shadows that, after nearly 7 months, still hasn't resulted in a CH attack serious enough to try and abort. (I've always felt that you shouldn't poke a sleeping dog, if you get what I mean, so I won't use sumatriptan unless I'm desperate.) Yesterday I experienced aura for about 30 mins in the morning. This was followed by a piercing headache on the non-CH side of my head that lasted a couple of hours. Bad, but not debilitating (and similar to migraine-type headaches that I get but that have almost vanished since
  13. Shadows can mean several things to me. Yes - it's the feeling that an attack is coming on, but often it doesn't. These can last for a few minutes or simply just be sudden bursts of CH pain. It can also be the feeling that you've been hit with a low level attack - one that isn't bad enough to treat. I get these a lot at the moment. It feels like an attack is starting but then it levels off and never really gets going. The feeling can linger for hours - sometimes even the whole day. After an attack, I'll get constant "reminders" of the attack, as if my body is suppressing the at
  14. Now there's a name from the past. I'm sure I met Ben at a CH meeting in either Birmingham or London, but years ago. I hope he's well.
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