On a 3AM, beast-induced web search this week, I managed to stumble into this group of future friends.  Where have you been all my life?!  What a treasure trove of info I've found!  I've suffered CH for nearly 20 years, the first 5 of which I “rode out” while seeing a menagerie of Ophthalmologists, GPs, and ENTs.  It wasn't until 1995 that an ENT suggested I see a Neuro.  Two office visits and an MRI later...bam!  There it was.  “CH”.  Now my beast had a name.

Now for the guilty part:  I could slay my beast from day-one.  Doc put me on Imitrex tabs + Lithium and voila....problem solved.  In the many hours I have spent reading this site this week, I have learned one key thing:  I've got NOTHING to complain about.  As I learn about folks who are chronic, or folks who get 5-6 visits a day with no possible relief, or folks with young kids who are afflicted, I am overwhelmed with sadness...and a bit of guilt.  Sure, I've been to Kip9 many times and always asked "Why me", but after reading this week, I find myself asking different questions, like, "How did I get so lucky?!" and "What will I do if my meds ever stop working?"  I look at the exhaustive efforts that people go to in order to isolate their triggers and find the perfect cocktail, and I feel guilty for not really ever looking for triggers because I already had a cocktail that worked.  I even stopped taking the Lithium when I moved to a new city and was too lazy to find a new Neuro.

So please tolerate my presence among you as I troll through the volumes of answers and ideas looking for alternate ways to keep the beast away.  I’ve already picked up a couple of ideas like ice packs, heating pads and blowing your nose.  Maybe it’s wishful thinking, but some may actually have helped these last couple of days.  

Thank you all for being here and sharing your knowledge; hopefully someday I can add something meaningful that will make a difference for the next newbie to come along.

Scott...quasi PF

Hi Scott. Sorry you had to find us but glad that you had to as well. Does that make sense?  Anyway I am glad that the lithium and inmitrex cocktail works for you so well. Continue to read and learn.

Welcome home.

Hi Scott & Welcome to Clusterville

 So very glad you found us.  Nowhere else will you find a group of people who understand like we do.

 You didn't mention oxygen.  Make that the next weapon in your arsenal . . . and save the Imitrex (most here use the injectable Imitrex if the 02 fails to abort).  I can't use Imitrex at all due to some artery blockage and high cholesterol, so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack.  I also use ice packs (used to like heat).

 Melatonin (OTC) if you're troubled with night hits . . . . can make you a little groggy if you have a breakthrough hit in the middle of the night and wake up wondering, "what woke  me up . . . oh, HIM again . . . and reach for the 02.

 I was having multiple day/night hits when my wife found this site for me 2/02 . . . and this place gave me my life back.

 Keep reading, keep posting . . . you've just found your second home.

   Be Safe,   PFDANs

      Richard

I'm with Richard, make sure you check out oxygen. I've been very succesful using lithium as my prevent for many years now, using oxygen for the break thrus and the occasional imitrex jab. I MUCH prefer the oxygen as there is no side effect afterwards...what I call "the imitrex hangover!"

Damn glad you found us, welcome to the family.

Guiseppi

Welcome Scott,

    Don't feel guilty for kickin the beasts ass early on.  Pain is pain, whether its one attack or many.  Good to hear you can beat it with your meds.

  definitely read up on the oxygen.  Its a good thing to have around.

                                                PFD's
                                                 JPC

Right on Scott, kick some beast ASS!!!! Im putting you on Coach Bill's clusterhead roster. Welcome to the team. Pick up a orr and start rowing, Start telling us some more of your beast asskickin tips. Coach Bill

Thanks to all for your words of wisdom and support...very reassuring.  I'll be sure to follow up on your suggestions.

I'm a little late getting here to welcome you to Clusterville, but welcome anyhow.

I'll second (or third - whatever) the O2. Check it out. About 70% of us swear by it. Right now it's my ONLY abort. Haven't taken anything else since August. But you'll need a high flow rate regulator (at least 15 liters per minute - 25 liters is better) and a non-rebreather mask.

Chuck has a post on the medications board that gives the proper use of O2.

Melatonin is great to prevent night time hits and let you get some sleep (at least for me). I take about 12-15mg before bedtime. Red Bull if you're out and feel a hit coming on is good if you get to the CH on the very "front" (doesn't work on a full blown hit).

And don't EVER feel guilty around here! We LOVE a success story. And we love to hear when someone finds something that works for them.

Hugs BD

Welcome Gator Scott,

I'm much like you and seem to have a program of management for my CH that largely works for me. A CH cycle still sucks to the degree that my lifestyle is screwed with, and for those hits that break through, well, you know what I'm saying.

And yes, I know i have it "good" compared to many here. But, don't forget that what you have learned to accept, many don't ever have to deal with at all. You've adjusted, but that doesn't make it right. That is why I'm still here looking for answers and support. One thing we all pretty much agree on is that these things change over time - what works this cycle may not the next one.

So read up. Build bonds. Pitch in with support, even it is only a kind word to someone at their wits end.

Again, welcome.

Scott (Spartan Scott, MSU, that is)

Fantastic advice, thanks Spartan Scott.  (BTW, born in E. Lansing myself, with dad an MSU grad).

PFDAN for several days now, so history would say my CH has moved to its cave for the winter (knock on wood).  I do plan to re-engage with a neuro this year, and will definitely come armed with what I'm learning from all of you.  I'll continue to lurk and give my own brand of support...thrilled to be in the company of so many bretheren.

Thanks to all.

Scott.

Welcome to the site Scott. Sorry, can't bring myself to say the first part of your name.  ;)

I feel like you do when it comes to not feeling like you can complain. My attacks are once a day, and seem to be on the way out. As today was a PFD...minus a shadow or two. First PFD in 2 weeks. But my attacks are instantly aborted with Imitrex. I can't imagine more than one a day.

I'm both new to CH's and the site, and these guys are great.

Again, welcome from Hurricane Country,
David.