I have had clusters for 22 years. Not continually thank goodness or I probably wouldn't be here to type this.  When my CH started it was shortly after my daughter was born. I thought maybe it had something do with the epidural. WRONG! I went misdiagnosed by several doctors including neurologist until 2010, when I had CH for 10 straight days and landed in the hospital. I was using injections, pills, nothing, NOTHING was helping it. Before, 2010 I was baffled why NO one could tell me what was wrong with me. Why was getting this beyond describable pain in my right eye and ear, why was nose closing off on the same side and how could they come so fast, last sometimes 10 min to 30 min and just be gone? I had MRI's, X-rays, CT's, not a single clue. Finally I knew what they were, now I had to learn about them, how to treat them and how to live with them. The learning about was easy. READ, READ, READ!! Treating them and living with them not so easy!
Now, I was in the hospital for four days, being pumped full of IV pain meds, because I live in a small town with pardon me, CRAP doctors!! My doctor didn't know what to do, so he did that. It was while I was in the hospital I had an intern that came in and talked to me for a very long time, listened, and he's the one that said "I believe you suffer from cluster migraines" The sky's opened up, I had answer. He suggested I start verapamil, so I did. I went 8, yes 8 years without an episode. Thought I was in the clear, that I was not going to have another after suffering so many years of not knowing. Well, it seems I am in a cycle and yes they have returned after an 8 year remission.  I am currently on a mission with a new doctor to try and find something that will help.  I am considering O2 therapy. I recently tried and went of topamax, there aren't enough characters remaining for me to describe HOW awful that medicine was for me. I'm having on average 2 a day, most always around the 9pm hour, some do show up between 2-3am. Pain level can be a 5 or 5000, I have been using nasal spray (Imatrex) it seems to work in bringing the pain down to a tolerable level, but I am sure it is not what is making them go away. After I have one my body is so sore and I am exhausted, especially after the early morning hour ones. They seem to be the most intense in pain. I am depressed that I went 8 years thinking I was going to be in remission for the rest of my life and here they are in all their glory!
I am interested in natural remedies. I am going to talk to my doctor about the D3, Omega Fish Oil regimen. I was wondering, has anyone tried medical marijuana? I've read studies but none of them seem to have a clear yes or no. I'm curious if anyone here has tried it?

Thanks for info Brian.  I am definitely looking in to the D3 and Omega Fish Oil.

Aside from trying to get these damn things under control, I wish I could get the people around me to READ and educate themselves on CH's so I would stop hearing "maybe if you tried...." or "I know when I have a headache I do this" IT IS NOT A HEADACHE, IT'S MUCH MUCH MORE!!! I'm going to start handing out flyers I swear!

Thanks again. I'm going to stay around on the forum, I found a lot of useful info here just the short time I was on it!

We've all had many suggestions from people who have zero understanding of CH as to what we can do, with a lot of them posted here - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Oxygen can be amazingly good at killing off CHs. We've an O2 page - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

so far everyone here has been AMAZING!! I am so glad I didn't stop searching when I was looking for a website for help! I was really looking for information what I found was soooo much more!!! I will keep you all posted. I go back to the PCP next week for a follow up, we are going to have a chat about the D3 regimen and O2. Thankfully I have a really great PCP and he listens to me and researches with me. I am sure he will be willing to try it since I drive him crazy about how these prescriptions are slowing killing me!! (a tad exaggerated)
Thanks again all! I can't wait to share the information about CH with these people in my life so they can be somewhat up to par and stop throwing out suggestions!

Hey All!!!
I wanted to jump on this morning (I'm in Ohio) and tell you what I experienced last night. I think for the first time EVER I kept a CH at bay, and yes it was by doing something someone on here suggested. I can't remember who, I will search them out later and give them a BIG THANK YOU! Any way, as soon as it fit, I mean my first eye piercing, knife pain, I told my husband (who is wonderful I might add, he takes excellent care or me during these damn monsters) he got me the biggest, coldest glass of water, I downed it, no stopping, got another, I downed it no stopping, IT WORKED! Within about 5 minutes the pain had subsided enough I could breath normal and sit down (no sitting when one hits, mostly rocking like I'm holding a baby) I was pain free in about 20 minutes and remained pain free the rest of the night, I slept clear through, well except for having to pee because I drank so much water.  This is the first morning I have felt like doing my hair and wearing make up in WEEKS!! I feel like I have won the lotto all because I found this forum! SOOO THANKFUL!!!!!!

THANK YOU 22YS...we LOVE hearing news like this...it's why we are here!!!!!!!!!!!!!

Best

Jon

AussieBrian wrote on Mar 8^th, 2018 at 10:33pm:


That 'bout sums up the WHOLE " raison d'être" of this site....thank you Sir!

22,

Some of us wolf down an energy drink ( Red Bull, monster etc) at the first indication, with some success.

Let us know how it goes with the Doctor.

Peter.