Let me tell you a little about myself! My name is Nancy and I first starting getting Cluster headaches when I was just 17 years old. I went to the hospital and I was told I had Migraines. At first my clusters would last for about 3 months at a time and I would have anywhere for 3 to 6 clusters a day, lasting 30 minutes to 5 hours each time.  I am not able to take any pills once the cluster has hit me…I get so sick to my stomach and can’t hold anything down. I turn white as a ghost start sweating, my nose starts running and I get a very sharp burning stabbing pain behind my left eye and my heart races as if I were running a marathon. For some reason the clusters love to hit me when I am sleeping when they first come out of remission, and then after a week or so after being out of remission I get them all day every day.
The headaches would go in remission for about 2 months and then start their pattern again. I never realized there was a pattern to them; I would just try to survive the pain.
I lived like this for the next 20 years, although my remissions started lasting a little longer as I got older.  It wasn’t until I was 38 that I finally got diagnosed with clusters!! I had come out of remission and called the doctors to get more Imitrex injections, the nurse told me she could get me in next week!!! I told her I needed the meds today, but I had not see the doctor for over a year and I needed to see the doctor first!! I told her I could not wait until next week; the nurse would not give me an earlier appointment. So I told her never mind….I said that the headaches would either kill me or I would kill myself and I hung up. It was about 30 minutes later the phone rang and it was my doctor who told me to come in right away. The doctor sat down with me and asks me to describe the headaches again; it had been over 20 years since she really asked me to describe them. She said OMG, I am so so sorry…you don’t have migraines you have cluster headaches.
I went home and started looking up clusters on the Internet and found this support group!! I cried like a baby when I first started reading my stories that someone else wrote. I was happy to read I was not crazy and what I did during a headache was common for us cluster people.
I have not been active on this site because I am a Episodic sufferer not a
Chronic sufferer. Its just nice being able to read stories like mine and to know I am not alone. I am going to try to go to bed now; I had less then 3 hours of sleep last night because I was hit with two clusters. I pray everyone has a pf night. Peace out. 
:-*

Hi Nancy,

Welcome back, but I sure wish the heck you weren't here!  One of these days we'll find something so this place isn't needed any more, but in the meantime, welcome home.

You mentioned Imitrex, but didn't say anything about anything else you are doing.  What prevents?  Oxygen?  I strongly suggest you look on the Meds and Treatments board and look for a long thread called 123 Days Pain Free and I Think I Know Why, or something like that.  Find 123 Days and you will be there.   :D  It talks about a Vitamin D therapy that is working very well for quite a number of people.  I also strongly suggest you look at the Oxygen Info button on the left side of the page (In yellow) for proper use of Oxygen to kill hits.  The only real thing I would change on that is to increase the flow rate from 15 lpm to at least 25 lpm.  You may have trouble getting an oxygen supplier to provide you with a regulator that will go that high, so ask your Dr for a prescription for 15 lpm and go on Ebay and buy a regulator that goes higher, or else go to Harbor Freight and buy a welding regulator for about $38.  That will go as high as you can handle.  If you have any questions on any of this just ask.  If you have trouble finding an oxygen supplier let me know.  I just went to work for one, but we don't go quite as far east as Lansing.  I can help you find one in your area that will take care of you.  I'm out in Aurora.

I hope this makes sense.  I'm running on real low sleep rations as well.   ;)

Jerry

PM me if I can be of help.

Hi Jerry!

So much for a pf night!! I got hit 3 times since I went to be at 9:30 last night, its not only 3:30. I have not given up on trying to sleep anymore for tonight.
I didn't have the strength to write a whole book last night, but yes I have tried Oxygen before and I found it really not to help that much for all the trouble and money I had to go through to get it. Maybe it was because I couldn't get the regulator as high as you talked about. But having to lug that tank around is a pain.
I am one of the lucky one's as far as these clusters go...if there is such thing as a lucky cluster sufferer. I go in remission with the help of the 15 day Prednisone treatment. As I get older my remissions are getting longer; I can be in remission anywhere from 18 months to 3 years is my new average, but this last remission was 5 years 9 months.  I think through the years I have tried just about every preventative but can't say any of them really helped! So unfortunately the only thing I can do is treat these monsters    once they show their ugly face. The Prednisone treatment and Imitrex injections works well for me. I just know to avoid the 100% triggers once I am out of remissions..three big triggers are alcohol and what I call "Church perfume" and stress. Stress is the hardest to avoid...these so called headaches cause so much stress in themselves.
Its nice to hear from someone local being how rare these headaches are, but I feel they are just rarely diagnosed properly and that is why they just seem rare.
Well.....time to get ready for another long 10 hour work day with little to no sleep. I work from 5:30 am to 4 pm 5 to 6 days a week :D, its so much fun with no sleep!! Thanks for replying to me...hope you have a better day then I am going to have.  ;D

Oh Nancy.. the O2 didn't work for a lot of us until we got the RIGHT mask and the high flow rate going. Might want to try it again.. I use a demand valve and it works to kill a hit in about 3-5 minutes and is wonderful. The Ch.com store has opti2 masks that are great, but at the least you need a NONrebreather mask to work at all.

And a can of Red Bull (or energy drink with at least 1000mg of Taurine in it) works pretty good for me if I'm away from my O2. Do this at the first sign of a hit.

It's funny that you said stress is one of your triggers.. it's just the opposite with me.. I get hit when I relax as do a lot of others around here. Just shows how different we all are.

Welcome to Clusterville and I do wish you a lot of PF days to come.  :-*

Wow, BarbaraD!! Another woman!! I thought I was the only female on this site! lol
Sorry I just read your post...its been a crazy/bad 3 weeks for me. I can't hold anything down during a ch...so I don't think a redbull would help!! I do give myself shots!! And yes.....both stress and being relaxed is a trigger!! I get most of my ch at night as I try to sleep, but I also get them if I feel stressed. I can feel my temple tense up on the left side of my forhead and then the next thing I know.....here comes the beast!!
Sorry again for the delay in my reply!! If you read my other posts, you will see why!!  :-[

[quote author=37233E22252865636260510 link=1352251900/4#4 date=1353948007]Wow, BarbaraD!! Another woman!! I thought I was the only femail on this site! lol
Sorry I just read you post...its been a crazy/bad 3 weeks for me. I can't hold anything down during a ch...so I don't think a redbull would help!! I do give myself shots!! And yes.....both stress and being relaxed is a trigger!! I get most of my ch at night as I try to sleep, but I also get them if I feel stressed. I can feel my temple tense up on the left side of my forhead and then the next thing I know.....here comes the beast!!
Sorry again for the delay in my reply!! If you read my other posts, you will see why!!  :-[/quote]
There are more here than you think, lol.

Sorry you're back Nancy, but fortunately there are many alternatives to try.  Read as much as you can and hopefully something will work for you!  I also have to echo what Barb said about the O2.  Definitely try it again!

Take care,
:)mel

Nancy, you might try melatonin before you go to bed at night. I do this and it stopped the night hits (most of the time) for me. Don't quit it if it doesn't work the FIRST time you try it. Took me a while to figure that one out.

But the melatonin gets you thru the REM sleep where the CH hits. Try it.. I take about 20mg a few mintues before I hit the sack.  :-*

I think there are a lot more woman who have ch but have been misdiagnosed with migraines like I was for 20 years before telling my doctors nurse If she couldn't get me in right away to update my med's I would be dead, so I don't need that appointment a week from then. My doctor called me back and got me right in....then she asked about my headaches again and felt horrible when she realized I had clusters.
I will check into melatonin to see what it is and where to buy it. I am willing to try anything/everything.

Thanks again Barb and Melissa.

You can get the melatonin at the drug store OTC or at the grocery store (usually) in the vitamin isle. Walmart is usually the cheapest place.

But give it a try. It really works good for me. Like I said, I very seldom get a night hit since I've been on it and that's been several years now. BUT the THIRD time I tried it - it took about a week or more for it to start working good, so don't be like me and give up if it doesn't work the first time you take it. Wish someone had told me that... saved a lot of painful nights..  :-?

Here's hoping that your remission will come soon and you'll stick around and help someone else .. our support is what keeps us going..  :-*

I promise!! "When" I go back in remission, I will stick around and be happy to help and support others like us! This month has been a real eye opener for me.  ::)

Hang in there Nancy, your cycle WILL end! ;)

-Gregg in Las Vegas