Hi everyone, sorry for the length of this post. I've just recently put all of this together and would really appreciate some feedback and advice. I've had a few terrible nights lately.

I have had three cycles of what I now think are cluster headaches. During the last two cycles I was still working my way through the onset and diagnosis of fructose malabsorption and fibromyalgia and didn't yet see a pattern in my headaches. The first headache I got woke me up in the middle of the night (like they always do) and I thought I was having a brain aneurysm. I had a roommate at the time, but I was in so much pain that I couldn't even think or fathom waking her up for help. I crawled out of bed and laid on the floor for probably half an hour until it finally eased up. It was around the same time of the onset of my fibromyalgia (I was 19), which presented itself initially as INTENSE full body pain 24/7, so I thought it was just part of fibro and my mom who has migraines told me it was probably a migraine. It happened several more times, once with the same severity, and then eventually stopped. I saw a neurologist, but he was a horrible doctor that wrote me off without any tests or even a thorough exam. The headaches came back a couple years later while I was living alone. At that point I was determined to find the triggers myself and treat them independently. I am extremely disillusioned with doctors. I have seen many for my different pain and neurological symptoms and have only ever met a couple that actually cared and wanted to help - and even they didn't provide any answers in the end. So I thought maybe the headaches were just a fibro quirk triggered by something that I had to figure out myself. I took supplements, changed my diet, and I eventually convinced myself that staying super hydrated was the answer because the headaches went away again.

But I've maintained my careful, healthy, hydrated lifestyle and the headaches are back again! The first two cycles lasted a few months each and I think I may have had another cycle within the last year that didn't last as long. Maybe they're getting closer together? :/

Anyways, I'll talk to my doctor at my yearly check-up either way, but I have a few questions for everyone here. Do you think my headaches sound like cluster headaches from your experience? I know you're not doctors, but honestly I trust the experience of others more than someone in a lab coat telling me I 'probably' have migraines. I haven't noticed any eye swelling or nose running, but I also haven't been looking for it or thinking about it until now. I will pay closer attention the next time I have a headache (probably tonight). It has woken me up around 3 am the last two nights. I was spending the night with my fiance and had alcohol the first night, which I think triggered it. I also had them 3 times in the last three weeks. It is the same old thing - I wake up in the middle of the night in excruciating pain. The only thing that helps (I use that term loosely) is sitting up and staying awake. I have to let it run it's full course because if I feel only slightly better and go back to sleep I wake up in MUCH worse shape. This morning I was crying, holding my head as hard as I could in my hands, stretching my neck various ways. My poor fiance felt terrible and had no idea what to do. He kept offering help, but I could barely talk. The pain initially started in the right side of my forehead (which doesn't quite fit the norm?), but got so bad it engulfed my forehead and was referred to the back of my head. All together it lasted almost 3 hours and then went away on its own. Light or sound doesn't bother me, but I prefer to be left alone in my misery until I recover. I can't talk, can't see a way out. I'm scared to go to sleep and the lack of sleep makes my fibro flare up.

Second question, in your opinion is it worth getting a diagnosis? I know with fibro my diagnosis was very stressful and a long process, but really doesn't benefit me in any tangible ways. Do you have any medications that help? I read that oxygen is one option. I usually have terrible side effects from prescription medications, so the more natural the better, although the pain is so severe with these headaches a few side effects would be a fare trade off.

There are a decent range of meds which help with Cluster BUT the primary reason for getting a diagnosis from a doc with skill/experience:

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"