Hello Sarah from Indianna.   I'm Linda from kentucky. 

Are you saying that your very 1st. CH was only last Saturday???????????   (Today is Monday)

Please let us know when you get diagnosed O.K.? 

If you indeed do ahve CH most here get on Verapamil or Lithium as a prevent and 02 as an abortive with Imitrex shots as a back-up.

Hi Sarah,

Sorry that this beast has chosen you, but glad that you're hitting him back right away! That's a good thing that they knew to use O2 at the ER.

SarahSmile wrote on May 23^rd, 2011 at 10:12pm:


My CH started 30 + years ago. I've tried one or two honking ton loads of meds. Currently I'm partial to the clusterbusters approach for a preventative, and am also trying the CH high dose vitamin D3 regimen.

If the beast comes back to visit me despite these preventatives I'll be aborting with O2 again, with imitrex injections (partial dose) on hand for a back up.

Newsweek article on clusterbusters:Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The topic here on the vitamin D3 regimen:Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The partial dose imitrex tip:Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

And oh yeah - beware of alcohol!

Drinking some brings on an attack with a ferocious intensity never to be forgotten for most of us, when we're in cycle.

Yes - Saturday night was my first headache.  Friday my left eye (affected side) was watering all day.  I thought it was so strange, and very annoying.  Watered all day Saturday - and then bam - the headache hit about 11:00 PM.  Lasted 1.5 hours.  Then cleared quickly.  Sunday - continued with watery eye and a several short headaches.  Then 8:00 PM - the "killer" hit.  Went on for hours.  I finally went to the ER and asked for oxygen.  The ER physician was stubborn at first - saying she thought it might be "sinus" (REALLY??!!) - started a mild pain med and ordered a CT.  Then she left for about 15 minutes (presumably to look up cluster headaches) and started me on oxygen.  Headache cleared incredibly fast.  CT normal - diagnosis, probable cluster headaches.  Sent me home with a rx for Ultram (which is making me dizzy as we speak) - and THANKFULLY I had a night off.  No headache.  Seeing neuro that specializes in headaches, but not for a few weeks.  In the meantime, seeing NP at ENT group that specializes in headache management.  I have given in to a constant fear that it will happen again.  I suppose that is normal.  For the time being, I am holding on to the hope that since my eye isn't watering, then a headache isn't coming.  Lol.  We will see if that holds true.  Thank you for the well wishes.  I know I've only started the journey - so nice to know that this forum exists.  It's impossible to explain to someone who's never experienced it how AWFUL it is. 

I do have one more question for the time being - my 7 year old daughter unfortunately witnessed me completely breaking down during hour 2 of Sunday's killer headache.  I scared the bejeesus out of her - and she's literally been attached to my hip since - and very worried.  Now I am worried - I guess I'll do my pacing in the garage next time.  Any suggestions?

Thank you to all again!!!

  Someone will be along with their experience/knowledge of Tramadol . . . I haven't used.

  Regarding your query on how to deal with CH & your daughter.  YES! . . . they are scary for her . . . and for us . . . especially if you start having multiple hits daily (and nightly).  Here's how I dealt with it:

  I agreed to pick up my grandson (Alex . . then 8, now 14) from school and stop by the Dairy Queen on the way back to drop him off at his mom's office.  Well, of course you have to get there 20 min. early to wait in the (growing) two lanes of cars for the pick-up . . . I spent the time cleaning out the build-up of rubble/trash and assorted tools n such . . . had the windows and side door open on my van . . . was a cool day, so most of the other cars were running . . . exhaust fumes are one of my triggers.  By the time he got in the van, could feel him coming . . . less than a mile to the Dairy Queen, but two redlights and a high school (also letting out) in between.  By the time we got there (about 8 min) . . attack was at Kip 5 and ramping . . . had my mask (1 litre bag) on and huffing the 02 when ordering at the speaker and picking up our treats . . . then to a parking space where I rocked inside, danced outside, apologized for the cursing . . . . but most important, explained what was happening to me . . in detail  (hypothalmus, vessel dilation,tri-geminal nerve) . . . and that the 02 would make it stop in a few minutes.  From start to finish, was about a 45 minute Kip 8.  He stayed calm and took me at my word.   His only comment to my daughter after I dropped him off was, . . . "poor grandpa" . . . and just dealt with it as one of those things we sometimes have to suffer.

  I will note that we as a family have had lifelong shared, often crippling pain. I, my oldest daughter and grandson are afflicted with a very rare skin condition . . . EB (Epidermolysis-Bulosa, simplex) . . simply put, the layers of our skin aren't stuck together normally and a minimal amount of friction causes blisters, especially feet and hands . . . he is always crippled at the end of the school week . . hands/fingers blistered where he holds his pencil, a dozen or so blisters on each foot.  It's a limiting, frustrating condition.  We can do anything anyone can . .. just not for very long (when I was drafted in 66', told them I could fly a plane or a desk . . as long as I didn't have to walk too far to get to either . . 4F of course.  So we are used to "that's the way it is . . . deal with it" 

  She needs to know that you are seeking professional help that will aid in bringing these headaches under control . . . if CH . . .they won't kill you and there are many options to help prevent attacks and abort attacks so you don't have to endure such pain.  It's the "not knowing" that's the scary part for all of us, kids especially.

  Be Safe,   PFDANs

     Richard

Both alcohol and smoking are known triggers for many of us, if not most of us. It seems a disproportianate number of us (disproportianate to the broader population) do or have smoked, and perhaps find it harder to quit. Might have something to do with that hypothalmus thingie that kicks off our hits. Anyway, it is wise to stay away from them while in cycle. And for us chronics, as much as is possible given our preferred habits.

As to others witnessing our attacks, I went for 15 years without letting anyone see me. If I was hit in public I locked myself away in the car, or in a room, so I could suffer in private. I am one of those who do receive an aura prior to a hit...about a 20 second aura but still a warning...and then it comes.  Now, my wife and youngest daughter have witnessed a hit. Several, since at the time I was stuck in Germany without O2. It is embarrassing, but perhaps the only way for a nonCH to "know" what we go through.

Read and read some more. You have a lot of options to try, and the cumulative experience of this community who witness that there is help and hope. Blessings. lance

I haven't ever heard of O2 shortening a cluster episode.

It is sounding like a headache specialist will be especially valuable for confirming your diagnosis.

At least you know that O2 helps though. 

You asked if the cycle pattern you describe fits the normal cluster episode. Actually, I do not believe there is anything like a normal cluster episode. There are elements common to any episodic or chronic cycle, but the norm is there is no real norm. You may settle into a predictable pattern, but be vigilant, cuz the pattern can change so very quickly. Prayers that you stay pf. Blessings. lance