Hello everyone:

Loving this forum.  I am a brand new cluster sufferer.  First round of headaches Saturday and Sunday night.  The most horrible experience of my life.

Have an appointment to get started on meds this Thursday.  Begging for oxygen at home too...as this was my miracle savior at the ER.  Wondering if some of you can comment on what preventative and abortive meds you take?

Looking forward to getting to know you...

Sarah from Indiana 

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

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.

Welcome to the club! Take some time and read up on the medications board as there are more options then you can shake a stick at. One of the most frustrating aspects of CH is that what works for me may not work for you. There's a lot of trial and error in the early stages, although oxygen is getting rave reviews from the vast majority of us who use it.

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

Take some time to read this link and discuss it with your doctor. Used correctly 02 is damned near miraculous in its speed of abort.

Doctors. Are you working with a headache specialist neurologist? Most GP's are uneducated in CH, even most garden variety neuros know very little. I ask because there are hundreds of headache types, including overlapping diagnosis, CH and Migrain etc., and numerous maladies that mimic CH but can be something more serious. Not questioning your docs diagnosis or his credentials, we've just seen the best results from those who are able to hook up with that Headache neuro.

I'm so glad you found us. Keep firing away with the questions, we'll help you any way we can.

Joe

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:

...Wondering if some of you can comment on what preventative and abortive meds you take?...

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

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

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

Hi Sarah and Welcome

  You have much reading to do about this beast of ours.

  Was it ER doc who diagnosed CH?  Very glad they got you on 02 . . . may help when getting a script for same.

  Do take the "cluster quiz" (link on left) and read the "cluster traits" link and "the kip scale".

  Start a headache journal, listing time of attack, duration, pain level (use the Kip scale) and try to identify any possible triggers (for me, alcohol, exhaust fumes, certain chemicals) . . . and take your journal and a copy of the Kip scale to your doc/neuro on your next visit. 

  As stated before, proper diagnosis is essential.  Most of us have had CTs and MRI (which will come back "normal" if CH) . . . to rule out other potential (and more serious) problems.  CH won't kill you . . . even though the pain is such one has to consider that it might (before you get a proper diagnosis).

  If it is CH . . . you've found the motherlode of CH info/caring/sharing . . . open 24/7 . . . and the info/opinions you get here come from folks who truly know your pain.

   Be Safe,   PFDANs

       Richard

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.

I'm amazed that none of you is mentioning smoking...?

Are you all non-smokers?

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!!!      

Oh - I forgot to mention!  The killer on Sunday night (which went on for HOURS and finally sent me to the ER) - I had some alcohol that evening right before it started (it was my birthday party - timing sucks!), and oh boy, I think that was a HUGE mistake.  Needless to say - I will not be touching alcohol with a TEN FOOT POLE, and that's saying a lot - because I love an evening cocktail.  So YES - alcohol seems to be a huge no-no for me. 

Anyone have experience with Ultram (tramadol)?  I've only taken two pills (both yesterday), and I am still feeling the effects today.  And they aren't fun.  :(   

  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

SarahSmile wrote on May 24^th, 2011 at 4:05pm:

Anyone have experience with Ultram (tramadol)?  I've only taken two pills (both yesterday), and I am still feeling the effects today.  And they aren't fun.  :(

I've been given tramadol before for a slipped disc. They didn't do too much to touch the pain, which although it hurt quite a bit at the time I now know that it's nothing compared to a CH.

They are also pretty addictive, even when used exactly in accordance with the instructions from my doctor, resulting in a fun withdrawal including cold sweats, not sleeping for a few days and other stuff.

I'd not touch them with a barge pole for trying to treat CH.

It's much better to get a good preventive, something like verapamil, lithium or topomax. That will stop most of the CHs from happening once you get to an appropriate dose. Then once you get a CH, having oxygen (and / or imitrex) will let you kill off a CH in minutes.

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

Thank you again - to all - for your advice.  It is all MUCH appreciated.  I have been prescribed Treximet as an abortive.  Since I am now on day 3 without a headache, the NP caring for me now would prefer to hold off on a preventative and the 02 at home - although she is more than willing to do that if headache frequency increases.  I am starting to wonder if I am a little crazy - I had several horrible headaches, with one monster headache that lasted for HOURS, within a 48 period with almost all of the cluster symptoms.  Interestingly, I found info on prodromal signs and had many of them 1-2 weeks prior.  But now - going on 3rd day of no headache - does that really fit with a cluster episode?  Or maybe because I nipped it in the bud with my ER visit - does that ever shorten the cluster episode?  I still will see neuro as well. 

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.  :)

Yes!  Agree!  The 02 was like magic.  I started crying in relief.  A few people have mentioned on here that untreated clusters seem to just feed them.  I was kind of thinking that maybe if you stopped it in its tracks, it could have the opposite effect? Just supposing.  Since it's vascular and the trigeminal nerve is thought to be affected - once the cycle is triggered by "something", the mechanics of the headache probably just keep re-irritating the nerve - perpetuating the cluster of headaches.  So if you successfully stop it - and EARLY - maybe that is beneficial long term.  Hmmm.  Lol.  I guess there's probably not too much clinical info on that since clusters are so misdiagnosed.  Ok.  I'm done playing scientist.  At least for tonight.  :)
    

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