"Modified" or shortened..today.8-25-2014.
It was the day I turned 18.I was over at a friends playing guitar like always.well,it was a sunday evening and I was taking a nap at my buddy's when i thought a tumor exploded.i didn't know what to do.the pain was unfreakin barable.i thought I was dying.well,every day since, I have had these.3 to 4 a day I am now 44.but,here's what happens.
i get a fuse type feeling in my head.right side.full blown in 5 min.i get flush,sweat like never before.just puddles of sweat.i cant breath,my whole right side goes numb,my lip droops,my eye swells shut,and pours water.bigtime.my heart flutters,and my nose clogs up completely,but yet pours out clear fluid,and indescribable pain.i have to get to a counter top and get into this certain stance and do what I call the spock hold on the right side of my face.
this just relieves the most minute pain possible.i have to stay that way for as long as it takes.you can feel it subside but I need to make sure or it will come back as quick as it came on.i scream,i run around like a nut,i have done crazy things in the past to alter the pain.i make crazy noises.and sqwirm around.holding my head.
when these things do go away.my jaw bone and face hurts to the touch,very sensitive,and im whipped.like I did a 12 hour shift of roofing..and by the time I get my stregnth back.another one hits.
this goes on all day every day for 26 years now.and then it's bedtime.im so scared to go to sleep but you have to.and then bam.another one.and it's always 2 hours into my sleep.im so fed up I just wanna die..im nuts because of it.26 years no remission.
thanks to my Father God Jesus Christ and The Holy Spirit.They are the ones that kept me going or I would have done something about this years ago.thanks all..
and God Bless..Barry

If you plan to stay around, please:

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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In your next message, please give up some history about how you've treated you headaches. What is helpful is:

=have you seen any doctors?; ever a headache specialist?

=how do you treat them? What meds, doses, how long have you used each drug & the benefit.
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The good news is that, if you have Cluster, there are several effective treatments. The large majortiy of us have learned how to treat them so that our lives are not controlled by them. Takes some time to find what is effective for you, but odds are in your favor.

Welcome!

Sounds like you need the D3us ex machina....

Hi Barry. If you have the time and do a little more reading on this site you'll find quite a few people who have struggled with this just as long as you have. That isn't to assume we fully understand your pain, as this condition is unique to each and every sufferer, but that we can all relate to some degree or other what it is like to battle this thing day after day, often with little or no relief.

I'm glad you have found a way to give yourself the strength to keep fighting. I would urge you to stick around, read up on the forums, and see if there isn't anything you haven't tried yet. You never know when you'll stumble across that paragraph or thread that just may change your life.

Hi Barry... welcome to Clusterville.. sorry you're here, but glad you found us.

Most of us on this site have been (or are) where you are now.. Me.. I've been chronic since 97 and it's been ruff!

Getting a good neuro is one of the first things you need. One that actually knows what CH is.. and sometimes you have to go thru several to find one that knows anything.

There are several things that DO help a lot of us. O2 for most.. but it has to be done right.. Read the info on the left. If it's not done right it will NOT work.

The D3 regimen is working for about 80% of us right now.. I've been PF since Oct 21, 2013 since getting on it. But again, it MUST be done properly or it won't work. If you have any questions about that contact Batch and he'll walk you thru it.

I take 10mg of Melatonin at night before bedtime and have been taking it for years and years and that seems to stop the night hits.. At times I have taken more, but 10mg seems to work. BUT it takes a little while to get in your system.. Don't give up .. took me about two weeks for it to start working.

We all have different "triggers" so it's best to keep a diary and figure out what yours is. Oh and that can change.. for years I couldn't even look at beer - but now it doesn't bother me.. go figure that one.

What I'm trying to say is that these things have NO rhyme or reason and can change from day to day. Since 98 we've been on this board trying to find a "commonality" between us and so far we haven't come up with anything.. we just all suffer and have about accepted that, but are determined that these things are NOT going to rule our lives.

The aloneness is the worst part.. But coming here you'll realize that you are NOT alone. There's nothing you can say that we haven't heard or said and we're here to help or just listen (or read).. and offer support.

So read read read and as one guy used to say, "Take what you need and leave the rest." But there are years of study on this board and a lot of suffering. Keep us informed.. Like I said, we're here to help.  :-*

Hi Barry here again..thanks for the help everyone.I have done everything known to try and stop these.but,never seen this regemen.vit.d3.i will let my doc.know about this.i have had a nero doctor before and didn't help me.he thought I wanted pain pills and I got so freakin mad about it that I didn't ever go back to him.a very pregidous person he was.anyways.i did my profile and live in N.E arozona in a small town called Snowflake.my wife and I live off the grid.way out in the middle of nowhere.and we love it.but anyways.i will update you all on the vitamin d 3 shots?.if I can get em..thanks and God Bless..Barry.
ps.i will also update you on all the doctors,meds,and other things I have done.but need my past records and that could be awhile.
I have had these for along time but didn't see anyone till 2007.i didn't have a doctor till then either but I will let everyone know what I took in the past.Barry.
Oxygen does work eventually if I get to it in time.it will take the cluster from an hour down to 25 minutes or so.

Barry .. the Vit D are not shots.. They're over the counter vitamins.. Go read the info on them.. It's a regimen of vitamins along with the Vit D3.

And there's nothing wrong with living out in the middle of nowhere.. That's where I live also (except in East Texas). It's 8 miles to town and I don't go often.  :)

And Barry, we've all tried about everything ... and the O2 and the D3 regimen are about the only things that have worked for a large number of us (nothing works for everyone).

Keep us up to date..  :-*

BarbaraD wrote on Aug 25^th, 2014 at 2:32pm:

And Barry, we've all tried about everything ... and the O2 and the D3 regimen are about the only things that have worked for a large number of us

Both of those have been working for my husband! Please look at the link in my signature line to find out more about the D3 regimen :) . I don't think that most doctors will know anything about it, but the good thing is that you can do this on your own. Some people have pain reduction within days! You can buy the supplements from Costco, or order them from amazon.com

Hi "Barbara".and hey "Feisty".I will do this ok..i will try it..vit.d3 reg..ok..but not to change the story..but,we live 8 miles from town too.actually it,s 8 to the main road and then 2 or 3 to town.we have 2 towns linked together.called Snowflake Taylor.but,anyways,we have a well,solar,septic,and tons of trees that I cant afford to water.ha,ha..but,hey we love it..and were right next to The Little Colorado River.i mean right on it..you don't get no better than that...you know it.?.anyways..what the heck was I thinkin.i thought someone on here said it was a shot..well,in that case on the 1st im gonna go get some..and hope it works..thanks for everything Feisty n Barbara....take care and God Bless..Bear R.- (Barry)

Bear R.- wrote on Aug 26^th, 2014 at 7:54am:

i thought someone on here said it was a shot..

Some people do get a Vitamin D shot if they are deficient, but ideally you take the whole regimen with supplements that you get over the counter.

Good luck :)

thanks feisty..ok here's the deal.i went to the pharmacy and they had vit.D3 400 iu,D3 1000 iu,and D3 2000 iu..Now,which one do I take and how many a day? thanks..but NONE of these said Regimen on the bottles.none.well thanks Feisty and God Bless ya..Barry

ps..How are you taking part of my sentence and making it a quote?.ha,ha..im serious,how are you doing that.i tried and couldn't get it right.

The goal is to get your D3 levels up to a certain therapeutic zone, so it's hard to say exactly how much you should take each day. Most people probably average around 5~10k IU a day, some taking much larger loading dosages once a week on top of that. I personally take 5000 iu, and noticed an almost immediate result during my last cycle. Depending on your weight, diet, etc it could take a few weeks for the effects to kick in.

Hi Bear
The best thing to do is send a PM to "Batch". He's the expert on the D3 regemen - he developed it. He's a great guy and will tell you all you need to know.

For future reference I get all the required suppliments from iherb.com. They do the larger doses that we require and it works out much cheaper than buying in the shops.

Good luck with it.
Maz.

What Maz said... I take a maintenance dose of 20K (4 5000K mg) a day along with 2 big fish oil caps, magnesium, calcium, and a multiple vitamin.

when I first went on it I took 50,000mg once a week for the first two weeks and then leveled off to the 20,000mg a day.

But PM Batch and he'll give you the right way to do it. He came to visit me and got me started out right and checked under my tongue to make sure I swallowed all of them and everything. He's really a total sweetheart and is there to help.. PM him and let him explain the whole thing to you. He's helped so MANY of us..

Keep us informed.  :-*