Titan32

Thank you! No headaches today! What a great birthday! And I used facebooks fundraising to raise $65 for cluster headaches research so far!

Yes, the cycle is definitely coming to an end, this one just seems to be sticking around longer (which as I mentioned I think is a result of taking so many immitrex injections). But at least I'm down to one attack a day and generally they are becoming shorter and less severe. Although today I had a particularly bad one. I think I will ask my doctor for the 5-6 days of prednisone and as far as sleeping, I've been trying Benadryl and melatonin to see what works best for me, but still am struggling with getting more than a few hours at a time. I'm hopeful though that I'll one of these days I'll go to sleep and wake up 7-8 hours later. Maybe tomorrow for my birthday, fingers crossed!

Still haven’t been able to get more than 1.5 hours of sleep at a time but I’m loving the back and forth on this thread between everyone!

Just wanted to share an update that I am doing better, but also had some questions. I seem to be out of the peak of cluster headaches as far as pain level and frequency. Unfortunately I’m still getting on average one a day. Usually waking me up out of sleep but the pain is not too severe and 15 lpm of oxygen for 15 minutes handles it. I definitely think the immitrex injections I took extended the cycle as previously mentioned since I’ve never had the cycle last more than 3 weeks and now am getting towards my sixth week. I’m hoping the cycle ends soon. I know the most important thing is getting rest but between my 8 mo old daughter going through a sleep regression and odd work hours for my job I don’t think I’ve gotten more than 4 hours consecutive in several weeks. Hopefully things turn around. A few questions: My PCP gave me a Dexamethasone steroid shot to “break the cluster” but it didn’t seem to do make any changes except give me a dull headache for 2 days. Does anyone have any recommendations to break this cycle? I am going to the doctor today or tomorrow and would like to request something different to try and am looking for advice. I’m the past she’s tried prednisone but I don’t know how effective that was either. How long should I continue the d3 vitamin regimen once my CH cycle has ended? Are neurologists allowed to decline patients from paying out of pocket? I was willing to pay our local, highly-ranked neurologist organization out of pocket for my visits since they wouldn’t accept my insurance but they said they wouldn’t even allow me to self-pay and canceled the appointment. And it’s not like they’re not taking on new patients. Seemed odd and discriminatory to prevent care.

@BoscoPikoyeah, I had seen an article recommending 5 lpm before bed to help prevent a CH during the night but I think I will up it to 15 tonight plus melatonin and hope it works.

I think @BoscoPikoyou may have been right about immitrex injections extending a cycle because my current cycle is longer than ever before and this is the first time I've used injections. I've cut down on them (maybe 1 every 2.5 days) but still use them when oxygen & caffine don't work. My biggest problem right now though is sleeping issues. I still am waking up with a CH either an hour or an hour an a half after falling asleep. Most recently, for example, I woke up in pain, took oxygen and half of a 5-hour energy, and then was able to get back to sleep, but I was up again 1.5 hours later with an even worse CH that required an injection. Anyone have tips on how to get closer to a 7-8 hour stretch of sleep? I tried 5 lpm of oxygen for 15 minutes before sleeping, but didn't find that it helped. Should I be worried about caffine withdrawal? Should I bump up to 10 or more lpm before sleeping? Thank you.

@jon019 "...the replies above are absolutely priceless and practical...." Yes, I have been amazed at the support I've found here so far and the information has helped me. I'm so appreciative of your reply as well as the others. I'll be ordering that mask today.

@CHfather I am in the US. Last night during a CH (again 1 hour after going to sleep) I tried no immitrex, just oxygen & caffeine and it took the pain away enough to allow me to get back to sleep. Just a dull ache this morning, but am fine. I’ll try and use immitrex only in an emergency because I don’t want to prolong this cycle or get rebounds. Here is my oxygen set up. Does my mask need to have no holes in the side to be a nonrebreather mask? I want to make sure I’m getting the most out of my oxygen. I use 15 lpm for 15 minutes. thanks for the links, I’ll take a look. And thanks for the clarification on terminology. I’ve just always called them cluster migraines and no one has told me differently!

@BejeeberThanks for your reply. I read about busting earlier today but am confused as to what the D3 regimen is. Is there any articles you can provide regarding that or anywhere you can direct me to? Thank you!

@BoscoPiko Thank you for responding! I've been surfing the site today and its been very helpful to know of others struggling with these. I haven't been on any preventative medicine and I'm not sure why I get on average 3-4 years off before the cluster cycle starts again. I am "taking" Immitrex injections now (previously had been on immitrex pill). I didn't know that immitrex can prolong a cluster cycle. Should I only take one if absolutely needed? Sometimes it's frustrating not knowing when exactly to take it because I don't know if it's just a dull "hangover" headache from the previous migraine or the start of a new one. And I'm always scared of not taking it quick enough and having to deal with the pain. Thank you for the tip about caffeine helping with oxygen. I didn't know that either. I'll head to the store tonight and get some energy drinks.

First time post here, just looking for some support from fellow sufferers of cluster migraines since I feel so discouraged/alone. I'm in my fourth bout of cluster migraines (2009, 2012, 2015, and now 2022). It's strange I got them every 3 years during June/July and then haven't had them since 2015, but they're back. Each bout lasts 3-4 weeks of getting average 2-3 migraines a day. This is the first time I've kept a detailed schedule (posted below) and I've noticed that I seem to get them shortly after falling asleep, usually within 1 hour of falling asleep. I wonder if some of you who are more experienced with these notice any pattern or can provide any help/advice. I want to stop waking up from headaches after each nap/sleep. Are they connected to sleep cycles and REM? 6/21 -3:00 am woke up with the first cluster migraine 6/22 - 1:30 am migraine after a 1 hour nap. Painful, nose running, etc. 6/27 - 10:30 am after 1 hour nap - very very bad *missed writing one down? 7/2 - 10:30 am after 1 hour nap. Most severe yet. 7/3 - 4:30 pm out of nowhere. Longest lasting but not as severe as yesterday. 7/5 - 9:30 pm terrible, most severe, throwing up, taken by ambulance to hospital. Went to Neurologist 7/6 - 10:00 am - severe again, back to hospital - 10:30 pm - one hour after falling asleep. finally got immitrex and oxygen in which helped. 7/7 - 8:10 am - right after waking up - took immitrex and oxygen - 5 pm - took immitrex and oxygen - 10 pm - after 30 minute nap. Immitrex and oxygen 7/8 - 7:30 am - took immitrex and oxygen -10:30 am after wake up - took immitrex and oxygen - 4 pm - 9:20 pm - tried using just oxygen which didn't 7/9 - 12:45 am- after 20 minutes of sleep, - took immitrex and oxygen, then slept until 6 am - 10:30 am- 1.5 hours after nap started at 9:00 am - took immitrex and oxygen