Hi All,

I think it's been about 2 1/2 years since I joined and posted on here. I wish I could say I have been pain free all this time. But unfortunately that's not the case. Feeling exhausted, defeated and alone right now being in the middle of a cluster series. So I thought now would be a good time to get back in the group and the site.

My clusters changed and got weird a couple of years ago too. Instead of the 8-12 weeks of pain and clusters, then about the same pain free, that I had experienced for the four years since they started, I developed these random hits with no type of schedule. I think the most pain free during the last couple of years was 2 weeks at random times. And at times I would experience a bad series for about 2 weeks. The rest of the time it just seemed to be random.

Has anyone else experienced this?

Also what started a couple of years ago was getting woke up in the night with a hit. Most often accompanied at a time of dreaming. I have to immediately stand up and walk it off.

But, I finally had a couple of months pain free! Yay! Until about 5-6 weeks ago. :(  They started out typical in that they were milder and now have ramped up full speed!

One thing that is going on now is, like last night, I had a 10 and tried to abort with Sumatriptan nasal. It did not work. Most time it does. I was basically awake all night! It seemed like it had subsided and as soon as I laid back down it was back.

Is this common? Am I getting new continuous hits all night?

That is one of the hardest things is the sleepless nights! Beside the excruciating pain of course.

Also, I did go to taking the verapamil full time instead of discontinuing when a series of clusters was over. I take 80mg 4x a day. At first it seemed to keep the clusters at bay with less intensity when they came. But now I feel like it's not doing that. I'm thinking I might need to up the dose?

And I still use the Sumatriptan to abort. I try and wait it out if I can just due to the cost and the way it makes me feel the next day. But sometimes it just needs to be.

I am to the point of checking into oxygen tho and will do so soon.

Well, my fear was getting back on here that I would write a book in a post.  lol  I hope to get some sleep tonight with the aide of a Benadryl.

Would still like to meet some fellow sufferers as I really don't have much support.

Thanks for listening!

Peace, Nora

Hey Nora,

Welcome back...

This might sound off the wall...  but I suspect you're vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your cluster headaches.

Try to see you PCP for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.

The normal reference rage for 25(OH)D is 30 to 100 ng/mL... That said nearly all CH'ers who experience a favorable response to the anti-inflammatory regimen with 10,000 IU/day vitamin D3 test in a range of 60 to 100 ng/mL.  The target concentration is 85 ng/mL.

You can find the complete list of supplements used in the anti-inflammatory regimen, dosing, vitamin D3 dosing strategies, drug interactions & contraindications at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You can also read what other CH'ers are saying about their experience with this regimen at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This link will take you to the most recent posts.  Click on the previous page numbers at the top or bottom of the page to work your way back in time...

Take care and please keep us posted.

V/R, Batch

Hi Batch,

Thanks for the info. I will check out the links tomorrow.

Hoping for sleep tonight.

N

1. Are you seeing a qualified doc, one who has experience in treating complex headache disorders? If not, relying on our guesses is not the route to relief.

2. It's possible that an increase in Verap would help but, again a decision to be made my a competent doc.

3. The nasal spray version is the least reliable form and, if you delay using it until the attack has fully developed and/or gone on for some time before using it, will assure failure.

4. Until you are using your present treatments effectively, changing treatments may only be walking away from meds which have been partly effective. Reconsidering your dosing and technique would be a wiser firs step.

For the last couple of years I've been pretty on point when I get them.  Usually July 4th for the last 4 years but last year they didn't stop in the end of September like they used to.  Instead they died out and I was getting hit with mini ones at very random times I couldn't predict it or anything and I wasn't getting any shadows either.  They've persisted and about a week ago I got my first intense can't sit still one.  It was very wierd to me it wasn't following usual cycle standards by any means.  Hopefully they'll end early this year and I'll be able to enjoy some summertime things for awhile. 

Sorry go on hope you start feeling better and everything works out