CantBeWittyMyHeadHurts

Thanks Batch! That's what I was looking for. I'm trying to eliminate things since I can't pinpoint the issue. I do not wake up feeling rested and I toss and turn all night. When I wake up in the morning, I can clearly remember waking up and turning over a dozen times in the night accompanied with short periods of not being able to fall back asleep. I'm not stressed or worried or anxious about anything in particular. Our life right now is actually quite fulfilling and satisfying. I will continue my vitamin D3 regiment and look elsewhere for the culprit to my restless sleep. In the meantime, I always tell myself, at least you're not getting headaches! :-)

I was wondering if anyone experienced not being able to sleep well after starting the D3 regiment? I realize that tossing and turning all night is way preferable to having episodes. I've only had one CH since starting the D3 regiment 2 years ago. I'm so thankful for it. Sometimes I miss days of taking ny pills or even a week or two and start having shadows and it reminds me to starts again. I've noticed this time around that after taking the vitamins (I started taking it in the morning) that I toss and turn all night, but then I'll go a few days without taking my pills and I sleep *slightly* better. Also, melatonin doesn't really work with me. Anyone else notice a change in sleep patterns after starting/being on the Vitamin D3 regiment?

Sorry for posting 3 times! Not sure how that happened! Feel free to delete the other ones. :-/

I can't remember (and can't find) where it says how long to take the Vitamin D3 regiment after your cycle is over. I thought I remembered reading that it's best to stay on it forever but I just wanted to make sure. I'm not chronic and my cycle has been over for at least a month but this last cycle was vastly different from my last 14 years of cycles (which is how I found this site and read about the D3) so I feel like I should stay on it to be safe. I just wanted to make sure I didn't need to adjust my dose of any of the Vitamins when taking them between cycles and for long term. Thanks!

Hey Batch! I did not take the loading dose because I read that if you do that, being under a doctors care (and getting a blood test) were recommended to keep an eye on levels. I don't have a regular doctor and all the headache clinics in my area were full for months. So I just played it safe and took the regiment. It did seem to take two weeks but after that my attacks decreased in intensity slowly. I'm happy to say that I've been headache free for 11 days and counting! Pretty sure I am done with that cycle. I will continue with the Vitamin regiment and see what it does to my next cycle. I also stopped taking Melatonin and haven't had any flare-ups from that. I am still having slight shadows but I just chew a big piece of ginger (as recommended on here) and it leaves. I'm almost euphoric as I go through my day without an attack looming over me!

Thanks so much CHFather, MoxieGirl, and Spiny for your replies! Since I'm new to the CH diagnosis it's such a huge amount of info and tons of questions come up during my research. I appreciate the time you all have taken to answer my questions. Again, I can't stress enough how thankful I am for this website.

My CH always show up either right after I go to sleep at night ( 10-12pm) or early in the morning ( 6 or 7 am). It doesn't seem to be linked to how much sleep I get or when I go to bed. Do all clusterheads have triggers or do some just get attacks without any known triggers?

Okay, I just read the link. I have read it before when researching triggers. How does one go about figuring out if something is triggering attacks if it doesn't happen right away? I've been keeping a log of attacks but only duration, strength, what I used to helped during and shadows afterwards. Should I keep a food diary? What else would be helpful to log?

I have looked into O2. Right now I'm putting that in my back pocket because of space, not having a PCP, and because my attacks seem to be getting more mild. But I'm going to have the setup before my next cycle starts. At the moment, I take an Energy Shot at first sign, then an ice pack on my left eye until the intense pain is over, then try to get back to sleep. Since I've been on the Vitamin D3, most times the attacks only last an hour start to finish and hasn't reached more than an 8 on my pain scale. I'm trying to figure out if I'm doing anything that might be triggering attacks so I will definitely read your link on triggers. I've had CH for 14 years but my most recent cycle has been so different from the others. I'm staying on the Vitamin D3 forever now :-) I've been taking 20 mg of melatonin before bed. How long after my cycle ends should I stop doing that? Do people become dependent on it if they stay on it too long? Once again, I'm so thankful to have a place to go to ask my questions and you all are so fast with answering! It is such a peace of mind for me!

I am 3 weeks into the Vitamin D therapy and am please to say that my attacks have been getting less severe and less often. I have been having CH for 14 years but just recently was able to correctly diagnose them. I've been doing lots of researching and reading on this website. It's given me hope. This specific cycle has been hell is and has been vastly different from all of my other cycles. However, the Vitamin D has been amazing. The one side effect that I can't shake is the exhaustion during the day after attacks at night ( or in the morning). But at least it's not pain and I'm praying the cycle is close to being over and my life can go back to normal until the next cycle. Thanks so much for all the information on here!

I'm a little confused about triggers but here's what I think I understand. CH cycles don't have triggers, you get them and once you start getting CH you have them for the rest of your life. You can do things to make cycles shorter, less severe, and less frequent but not go away permanently. When you're in a cycle, you have things (ie, gluten, alcohol, stress, extreme temps) that can trigger an attack but these things don't start the cycles and by eliminating them, you can't become CH free. Is this right?

The Vitamin D3 has definitely been helping! I don't have O2 set up because I on have a PCP and it's a long wait into the nearest headache clinic. I read about welding oxygen but since the D3 is lessening the severity of my attacks I decided not to pursue O2 right now. We also live in an RV at the moment and I don't want to risk blowing us up :-D LOL! It is so annoying the suggestions I get and I try to keep them in perspective, my friends just want to help. But it does get a little maddening! No I don't need to cut gluten, red meat, dairy, blah blah blah!) You guys are an awesome support!

Someone told me they treated their cluster headaches with something called SAM-e. Has anyone tried this or heard or it working for CH? Granted, I take all advice with a huge grain of salt. I recently discovered that what I thought were migraines are actually cluster headaches. I'm sure you can imagine the huge relief I got from reading all my symptoms and struggles over the years and finally having a name for what I was experiencing! I've been on the Vitamin D3 therapy and taking Energy Shots at the first sign of my attacks (usually an hour after I fall asleep). They seem to be getting less severe, thank goodness! However, had anyone ever found that as they share their story that almost everyone has suffered from "cluster headaches" at some point in their life? I don't want to call these people out but I really want ro shake them and say, "I'm not sure we're talking about the same thing! Anyway! Just wanted to check on the SAM-e and maybe rant a little :-) I cannot express how grateful I am to have found this site once my CH broke out of their usual patterns and came after me really hard. I've poured over all the forums and links and advice and it's kept me sane! Thank you so much!