Hello all, to start, I'm a 36 year old male from Grand Rapids, MI and here's my story.  Almost two years ago (will be 2 years in October) I suddenly started having very bad headaches, like nothing I'd experienced before.  The only thing I could do was try to fall asleep and wake up on the other side of them.  I went to my doctor rather quickly and was diagnosed with a sinus infection.  After two weeks of anti-biotics I went back to the doctor with the same headaches, her answer was a stronger anti-biotic, and to help with the pain of the headaches while waiting for the infection to go away, some Vicadin.  The Vicadin did nothing, well, actually if I doubled the dose to 2 at once, and capped it off with a beer or two, it would make me sleepy enough to fall asleep and wake up on the other side of my headache.  Meanwhile during this second run of anti-biotics I got online and self diagnosed Migraines, though very rare to start getting Migraines at my age.  I returned to my Doctor with this information, (she herself is a Migraine sufferer, someone who would understand hooray), and was finally introduced to sweet sweet Imitrex.  I was put on Elavil and Topamax as prevantitives, went through 3 CAT scans and an MRI to rule out everything else. and by the end of January was doing great, the preventatives were working!  I had a couple headaches in the spring last year, specifically when a storm front rolled in, but nothing an Imitrex wouldn't fix, and went on with my life.  I did get in to see a Headache Specialist Neurologist that May was basically told, "well, they are under control now so what do you want me to do about it?"  To which I responded that I'd made the appointment 4 months before and thought I'd best keep it and at least become a "current" patient instead of a "new" patient.

  At the beginning of last October, a cold and wet fall started in West Michigan, and so did my headaches, preventatives be damned.  My doctor started refusing to re-fill my Imitrex afraid of "rebound headaches" (I've had these, they aren't "fun" but NOTHING compared to my now "normal" headaches) and told me I needed to control my "migraines" with over the counter meds such as excedrin migraine, and also started to wean me off the Topamax so I could start on another possible preventative commonly used for high blood-pressure.  While the bottle of OTC migraine meds says not to take more than 2 pills in any 24 hour period, I survived for 6 weeks by taking 6 pills....  every 6 hours.  My Caffeine riddled body would get exhausted enough to finally "sleep" once every 24-36 hours, for about 4-5 hours, or as long as that dose would last until a new Migraine would wake me up.  Due to poor attendance I lost my job during this period.  As I was finally weaned off the Topamax, I was about to start the new preventative med then suddenly, the Sunday before Thanksgiving, it snowed, and my headaches were gone.  I slept 14 hours a day for the next 5 days.  Horribly upset with my Doctor and her refusal to prescribe Imitrex, and also believing my "migraines" were seasonally affected, and no longer having health Insurance, I did not start the new preventative and in fact stopped the Elavil.

  I'm working again, and this spring I had a few "migraines" when bad weather would come but a couple OTC pills and I was fine.  Then about 6 weeks ago they started getting bad again.  We are having a cold and wet summer in West Michigan this year sadly, and I finally decided to go back to a different doctor in the same practice and try to get back on Imitrex as once again my attendance is suffering at work.  Two weeks ago I saw a Physicians Assistant at the office, and when I explained my symptoms she asked if anyone had ever talked to me about Cluster Headaches as many of my symptoms sounded to her like they fit.  When I got home I googled them and found the Mayo Clinic piece on CH's and was floored.  They fit me very well.  Not sure about the droopy eye as during an attack the last thing I ever think about is going to a mirror LOL.  I could never understand how other people could go to work through their migraines and I couldn't.  Was I a weakling?  I'd always through out my life thought I had a rather high pain tolerance.  Now I knew why I was so confused.  A week ago today I started on Oxygen, and while I seem to burn through it quite quickly, it helps oh so much.  Before starting the Oxygen I was having to use the OTC meds again because it's still like pulling teeth to get the Imitrex refilled, and Insurance only pays for it every so often (I'll be stockpiling them in my remission period when it comes, now I know) so I spent most of my free time the past week catching up on sleep. 

  Today I discovered this website, and have already ordered the CH Oxygen mask and look forward to it's delivery.  I seem to be a bit different than many of the other posts I've read here.  I don't tend to pace or bang my head during the beast, I sit up in bed and rock, sometimes crying out, always with a finger or two pressed the the vein and artery running through my left temple as it throbs away horribly.  Also, they don't seem to last the short periods I've seen many people post here (being able to sleep through them stopped being an option long long ago) mine will last many many hours if left untreated.  Lastly, during my Cluster Period, I have no time of day or night when I can expect them to start.  They seem to be there all day, all night, and come back immediately when my meds wear off.  Though now with the oxygen I'm able to forgo the meds and am keeping a log.  In my one week of testing, the Oxygen has been effective for me anywhere from 45 minutes at the shortest, to 6 hours at the longest, though usually they come back somewhere in the 2-4 hour range.  Tomorrow, I'm calling my headache specialist to set up another appointment now that I finally know what they truly are.

Looking forward to chatting with you all in the future now that I've found you.

Thank you for listening to my story,

Dahrken

Hi Darkhen and welcome

Reading through your detailed story it is very obvious that you need to work with a headache specialist and not rely on a GP or a physician's assistant as they just do not have the skills or experience to deal with complex headaches.

I wouldn't be too surprised if you have two different headache types in play here which is complicating things.

The first headaches you describe really do sound just like my migraines which I started just a few years later than you, with one of the key things being that going to sleep is what helps the most. This is one of the classic migraine indicators, although it does not diagnose migraine (that needs the doctor with the appropriate skills). With CH one thing you just cannot do is to go to sleep to make them go away, the pain will wake you from sleep.

But then some of the later headaches you describe sound like they could be something else.

Migraines can get pretty painful and I'm saying that knowing how CH can be excruciatingly painful. Some of my worst migraines are not fun at all in the pain stakes.

I understand why your doctors were reluctant to give you more imitrex. You seem to be bouncing around from medication to medication, over using some significantly and this will almost certainly have resulted in rebound headaches from the medication. This is a trap that is so easy to fall into as I know myself. I thought I knew how headaches worked from dealing with CH but my migraines too a whole lot more work to understand, working with my headache specialist. It is also possible that caffeine in the execdrin migraine is a migraine trigger for you, so resulting in more headaches.

To get out of this vicious cycle I had to really cut back on what medication I was taking, totally cut out my identified triggers and get to an effective dose on my preventive. Then start to make use of abortives when really needed but not too many to avoid rebounds. This wasn't easy, but it took me from having 10+ migraines a week to one every month or so.

Work with the headache specialist to get this working right for you.

Have you got a headache diary? This will help the headache specialist.

Do read up all you can about headaches as knowledge really does make a lot of difference.

Ask all the questions you can think of too.

While it's a long time off, stick with the headache specialist appt. IF you have Cluster, you will likely be with it for another 30-years (often tapers off from 50-70s).

Being treated for migraine meds won't help much, of at all. Print the PDF file, below, for Cluster specific meds.

IF you have Cluster, O2 by itself is not sufficient. It will abort quickly but as a short effective life. See the PDF.
Topamax is rather low on our favorite list because it's not alll that effective and the side effects of mental confusion is hard to bear, dring folks to stop it, especially in view of its low effectiveness.

See also:
These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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