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Hi All After a lovely 2018 remission from cluster headaches due to pregnancy, I think I’m starting a new cycle. Shortly before my pregnancy -with great difficulty-I managed to get oxygen which was sitting in my garage ready. I have about a 95% success rate with the headache either going away straight away and not returning after 15 minutes; going away but coming back after the 15mins or going away after about 10 mins. I’m still in the early stages of the cycle but I’ve experienced 4 hits a night using oxygen alone and if I use a sumitriptan injection no other hit during the night (but sometimes in the morning) So far the hits are fairly low on the pain scale compared to what I’ve had before (perhaps because I’m breastfeeding ??) The lowering in pain to what I’m used to is really making me question if these are really cluster headaches or something else. If I list my symptoms below can you guys give your opinion? I also have neck pain on the same side due to position when nursing and I’m wondering if it is that causing the headaches instead. -attacks happen either during the night just before or during sleep or first thing in the morning (especially if the heating comes on as the stuffiness has been a trigger in the past) - Pain on one side comes on quickly -mainly located in temple moving down the side of the head into neck. Intense in sinus and in teeth. -pain sometimes starts in the neck (this is what is making me question myself) -blocked nose on pain side but not always. -eye watering rarely because it doesn’t quite reach that stage of intensity. -oxygen/sumitriptan works regular painkillers don’t. -Neck hurts during the day but no headache comes. - pain is about 3 on the pain scale (the worst I’ve had in a cycle have been if someone had told me my arm was causing the pain I’d ask them to cut it off; worse than natural childbirth 8s-they’re usually a 6/7) what do you think? Although they are not as bad as usual it’s hard having a new baby and being woken up by headaches/being nervous to fall asleep and then being woken up by baby. I’m nervous that this is just the start of the cycle and that they are going to get worse. The last cycle Verapamil -which had been working for years-stopped being effective and due to nursing I don’t feel like experimenting with things that may/may not work. I just want to be certain I guess. Since I was diagnosed about 8 years ago I’ve had them under control with verapamil so it’s been a long time since I’ve really experienced the full intensity of a cycle. I usually start taking the verapamil before the cycle kicks in the the full extent. When they stopped working last time I fought for the oxygen but I was using sumitriptan exclusively to keep them at bay because it was hard work getting oxygen sorted. I have a doctors appointment booked to get some more sumitriptan so I don’t run out. I’d like to discuss my symptoms and re-evaluate my diagnosis but I know GPS don’t know much about Cluster Headache and I might end up going back over and coming away without the sumitriptan. If you have read read all of this thank you and I’m sorry for waffling!

Hi guys, I was diagnosed with Cluster Headaches about a week ago and have been on Verapamil and Sumatriptane ever since. I started having these headaches about a month ago and my diagnosis was only just confirmed last week. The headaches occurred once every 5 to 6 days at the start but ever since I started taking these pills, I've been having one every day. The pain is on the right side of my head, my right eye starts to tear up and becomes visibly red, and sometimes my right nostril get's runny too. I've heard people say that the pain is unbearable but the first headache I had would be an 8 (on a pain scale) and the subsequent ones ave gradually declined in intensity but they've also gotten longer. My last headache lasted two hours while the very first one I had lasted only 20 minutes. Right now the pain would be at a 5. I'm not sure if I have a high pain tolerance or I'm just one of the lucky ones (some luck huh). I would appreciate any advice I can get.

Hi guys, I was diagnosed with Cluster Headaches about a week ago and have been on Verapamil and Sumatriptane ever since. I started having these headaches about a month ago and my diagnosis was only just confirmed last week. The headaches occurred once every 5 to 6 days at the start but ever since I started taking these pills, I've been having one every day. I've heard people say that the pain is unbearable but the first headache I had would be an 8 (on a pain scale) and the subsequent ones ave gradually declined in intensity but they've also gotten longer. My last headache lasted two hours while the very first one I had lasted only 20 minutes. Right now the pain would be at a 5. I'm not sure if I have a high pain tolerance or I'm just one of the lucky ones (some luck huh). I would appreciate any advice I can get.

After multiple trips to the doctor and ER for headaches and a clean CT scan, my neurologist diagnosed CH. She said that my eye swelling and pain were indicative of CH (actually, she said Horton's Syndrome). My eyes hurt 100% of the time, and the headaches come and go (2-3 times per weeks) but always leave their shadow. I haven't seen any posts where someone refers to this eye pain. I have large swellings under both eyes that are bruised, red and raw, and my eyelids are extremely swollen, but not red and raw. So, I guess I have two questions. Is this eye condition related to CH? And, if so, has anyone found something to relieve the pain? Thank you in advance. It is so nice to have a place to go to ask my questions. Angie