Hello everyone, I'm 33 yrs old, live in Bronx NY and have been episodic since I was 16. Severe stabbing pain behind right eye/above right eyebrow and right temple sometimes accompanied with vomiting due to pain level. I would get them every three hours during waking and sleeping. My cycles have always lasted 2-4 months, my neurologist would give me a steroid taper/imitrex sprays as abortives and Nortriptyline 10-15mg before bed and within 2 weeks the cycle would be over. For some reason he was against prescribing oxygen. I apologize for the lengthy post but I am only at the beginning of my story.

      So I went all of 2010 pain free and my cycle started up in February of 2011. I did not follow the anti inflammatory regime as I should have and only dosed with high amounts of d3 which did work in ending the cycle. I went a little over 2 years pain free to april of 2013 when a new cycle started and the d3 did not work (prob because I didn't follow the proper regime). I went back on the usual medications as indicated above and the cycle took 3 weeks to end. September of that year I developed some kind of digestive issue that no doctors had answers for. While looking for answers doctors saw that I had gallstones and calcifications forming in my coronary arteries. I attribute that to improperly supplementing with high vitamin d3 and not following the anti inflammatory regime. My cholesterol lvls were always and still are phenomenal. Anyway, I found a homeopathic doctor that fixed my digestion and got me healthy by March of 2014. I had lost 44 pounds and felt amazing. I have also smoked cannabis on and off from 2003 to 2013 and then chronically from jan 2015 till 3 weeks ago when my cycle started again.

  I went almost 3 years pain free and the beast has returned. I noticed that I wasn't sleeping for more than 4 hours straight back in September of 2015 so I started drinking chamomile, valerian and skullcap while also smoking cannabis. That helped for about 2 months and then my sleep began to deteriorate more until about 3 weeks ago when my clusters officially returned.  I am getting hit almost every hour while trying to sleep and my homeopathic doctor cannot figure this out. I tried the anti inflammatory regime but I am confused about the b50. Is that a b50 complex? I'm terrified that I caused some kind of serotonin overload and I broke my brain. Melatonin and St. John's wort did nothing for my sleep attacks and after trying the anti inflammatory regime on Friday I still got hit every hour and the following morning I puked 4 times. I don't know where to begin as far as what tests to ask doctors to perform. Also my attacks through out the day are very minor, kip 1s and 2s every 3-4 hours. The second I close my eyes for bed the beast attacks with kip7s -9s every hour. Sorry for asking for help, I've always read these forums while in severe pain and I know I've missed something important. I welcome any and all questions or comments. Thank you everyone and good luck to us all in fighting this devil.

Get back on the D3 regiment and never leave it again.

Mark

All headaches are horrible, Godhand, so you're in the right place to talk about it.

Top left of your screen is a button for Cluster Quiz. Have a little look and tell us how you feel about it.

We're on your side and will help however we can.

Took the quiz, 1-8 no, 9-16 yes. Although sometimes for #8 it's a yes but that's extremely rare. It's if I hit a kip 10 for over 30 min usually I'll puke. Thanks for the quick replies. I'm scared of the D3 regime because 1) I have calcium in my coronary arteries.  2) every time I show it to a doctor they dismiss it and tell me it's anecdotal and say it may damage my heart further... I don't know, maybe I'm going to quacks. It's like pulling teeth trying to get answers. All they wanna do is shove prescriptions into my hand and not answer questions. What blood tests should I ask for? Three years ago and every time before I just assumed this neurologist knew what he was doing, but he never even did a blood test now that I think about it. I know we aren't doctors but could it be too much serotonin?

Hey Godhand,

Having read through your posts it seems to me that you are 65/70% convinced that the D3 regime is the way to go. If I'm right, then take the time to read up on it and gain an understanding of how it works (you don't have to get down to the biochemistry level).

You will find it discussed in great detail in the Medications and Treatments Section under the three "123 days pain free....".

Ask questions as you need.

BUT......once you decide to start, do it exactly as Batch has set out and make it a permanant part of your daily routine, forever.

One other thing. Why are you concerned about your Serotonin levels? Maybe I missed something in your posts but I understand that Serotonin is a chemical that is produced in the brain and works as an anti-depressant, amongst other things. I don't think I have heard any concerns raised in the past about it, in connection with CH or the D3 Regime.

Mind yourself,

Peter.

Thanks for the reply Peter, I started the regime today. I started with 15000iu of d3 and all the rest as per the regime. Hopefully I'll get a few hours sleep tonight. I know these things take time. Well my neuro explained to me years ago that ssri's help with slowing down the bodies serotonin absorption and allowing the hypothalamus to readjust and reset the circadian rhythm. I was worried that since my sleep was becoming erratic in September and October all the cannabis and chamomile skullcap valerian teas along with melatonin and St. John's wort may have caused a serotonin over production in my brain thus causing this cycle. I know nothing about any of this, I was just curious because it seems like now if I nod off for an hour I get a kip7+. I have only gotten 6 hours sleep since Friday night, give or take :'(

OK. Firstly I'm no doctor, but I have never heard of Melatonin, St John's Wort or Cannabis causing an over production of Serotonin. Nor have I ever heard of Serotonin production causing a Cluster Cycle, so I don't think you have to worry too much there.

If anyone wants to correct me on that, please do.

With regard to sleep, we've all gone through successive nights and days without sleep and know how debilitating it is. My sleep pattern is still messed up after years of suffering.

However, it's getting better gradually with the D3 reducing the CH attacks and 10mg of Metotonin every night.

I don't know if you drink, but I know that alcohol is a definite trigger while in cycle, so not a good idea.

I haven't used Cannabis since I was a teenager (a few years back now) and then very seldom, so I can't comment in connection with CH. There is some evidence that high levels of prolonged Cannabis usage can cause paranoia but, again, I've never heard of Seratonin production being affected.

Stick with the D3 and try the Melotonin and be patient. With luck you will feel considerable benefits in a short time.

Mind yourself,

Peter.

Godhand wrote on Jan 26^th, 2016 at 4:10am:

... I would get them every three hours during waking and sleeping...  I am getting hit almost every hour while trying to sleep and my homeopathic doctor cannot figure this out... on Friday I still got hit every hour and the following morning I puked 4 times. I don't know where to begin as far as what tests to ask doctors to perform... Also my attacks through out the day are very minor, kip 1s and 2s every 3-4 hours... The second I close my eyes for bed the beast attacks with kip7s -9s every hour...

Perhaps you could ask your doctor to consider that you have more than just the one headache syndrome.

Certainly I've cherry-picked individual comments from your first post but it might be worth looking at a headache condition called Paroxysmal Hemicrania to see if any pieces of the puzzle fall into place. It's a first cousin to CH, and easily confused if you get to enjoy both, but once you can pick them apart things ain't so bad.

The good news is that it's quite easily managed, allowing you to get on with your CH hits in your own way.

Purely a suggestion, meant well.