Wow, it’s amazing to find all of you here I can’t believe that there are so many out there with CH.  
My name is Christi, I'm 30 years old, married with 2 kids (girl 9, boy 3) and I was just diagnosed last week, so yes I am very new to all of this, so please bear with me.  My doctor put me on a prednisone pack and Topamax 25mg and I go back on Monday to up the dose of the Topamax.  I have the “shadows” as I am seeing them referred to here, but I have not been hit with anything higher than a 7-8 since starting the new Rx.   I need to get an abortive at my next appointment, as I am reading many of your stories.   (Does anyone else get the spacey feeling while on the Topamax?  It’s crazy, and getting old really fast, especially when I quit talking in mid sentence and the other person looks at me like I’ve totally lost it.  Thankfully that’s only been my husband so far.)
I have had "migraines" off and on since I was 16 but they come few and far between most of the time, and I would get hit 2-3 times a month and then nothing but I’ve always been one to just have a headache that lingers for a few days, vanish, return as a migraine a week or so later, linger a few days and then vanish again.  I have been reading over the site for the past couple of days and I can relate to so many of you.  
I feel so alone in all of this, no one truly understands, not even my husband and he has seen me raging thru an 8-9 in the middle of the night a time or two over the past year or so, just thinking it was a bad migraine.   The past few years have not been very bad for me CH wise, I was more focused on my female issues and any “headaches” I had I just dealt with while taking painkillers for other things going on with my system… in 07 I had a partial hysterectomy, as a result of that I got a staph infection nice long stay at the hospital and almost died.  After all of that was over I focused on work, family, more work, then in August of 08 I went in again to finish my hysterectomy, (at least that’s all over).  I finally got my HRT leveled out and feel normal on that aspect of life.  
I started this CH phase mid March in what I thought was a sinus headache, and was treated for sinus infection, but yet it never went away, so I finally went back to the doctor because it is driving me insane….. I pray every day that it will go away.  I have a constant shadow that stays around a 2 or 3 then goes up to a 5 then and then back down throughout the course of the days… and about twice a week or so I wake up to the Hot Poker straight thru the eye into the brain and its game on for an hour or two… I’m always tire, worn completely out, depressed and all round miserable… and so lately to top it off I’ve even heard it at work, there is always something wrong you, or you always have a headache, you’re such a hypochondriac…  I really thought I was until I found you all… I already Love You Guys!!!!!

Christi

Thanks so much Val.  I have noticed the tingles in my face more than anywhere else as of yet.  I do know that my Diet Dr. Pepper tastes flat all of the time and I now have the reason... I am naturally blonde and have never been the "dingy" type... so this new me and it is cracking my husband up.  

I am doing as much research as possible and Yes, I am going to ask about the O2, seem as if everyone here is using it with pretty good results.  
Christi

Blondie wrote on Apr 29^th, 2009 at 11:45am:


Hi Christie,

This night time attack is one of the hardest for everyone on the site it can be a real head F*@k at times.Excuse the language but its the only way to describe it. Please do read the OXYGEN section to your left and this will give you all the information you need to bring to your doctor. This has been a very powerful abortive for many people on this site. Hang in there girl and welcome to the site...


Lefty...!

Thank You!!!!

Its nice to finally be found! 


Christi

IN DEFENSE OF TOPAMAX -- I've been on it since 99 and it's been my MIRACLE prevent.... Don't think I'd be here without it. BUT here's the secret (forget what the directions say or the doc for that matter). TAKE THE WHOLE DOSE AT NIGHT BEFORE YOU GO TO BED!!!! You'll sleep most of the side effects off during the night

I've been on a dose of up to 400mg at times. Went for years at 300 and thank goodness now I'm down to 100mg, but I don't have all the side effects (or dopey feeling) that a lot of you complain about.

Food doesn't taste real great, but who doesn't need to drop a few pounds? I don't drink a lot of carbonated drinks, but they're not good for you anyhow (drink water or tea or coffee - they taste ok). Ice cream still tastes great.

Topamax has worked for SOME of us. Back a few years ago I quit it completely (don't even ask - I thought I was superwoman or something). did fine for a few months, then WHAM-- I had the mother of all high cycles... My doctor now has a signed statement that if I ever do that again he has permission to hit me over the head with a baseball bat!

If you get a little forgetful (heck, I'm OLD - I'm supposed to be forgetful) write post-it notes. But before you write it off - give it a chance.

Hugs BD

ive tried redbull but drinking that much made me feel sick so i binned that one although others say that it works for them. Mostly strong coffee, keep my self busy physically in work and when i get that strange feeling of some one playing a tune on my optic nerve i sing along with it (den den deen smoke on the water). cold bottles or towels on the side of my head and laugh my self silly at the stupidity of this crap but then again i never was normal lol

mark (shadowing like a palm tree in the desert but no hits since sunday)

I also take all of my Topamax at night.  I still get the cognitive side effect.  This doesn't mean in any way that I think the side effects outweigh the usefulness of the drug.  I love the fact that my migraines are much less frequent due to it!!     I simply wanted to put it out there that these side effects are what I (and many others have) felt in the first months of taking Topamax.  I could truly care less that I couldn't taste carbonation (ok - a flat beer was a bit annoying at first haha this was before CH and my migraines weren't triggered by alcohol)... Little annoyances were most of what I explained - Christi was asking for side effect info and I thought I'd give her some.  I love the fact that Topamax helps me!!  And I know it helps several here!

As I said, I truly hope it works for your CH!!! I wish it worked for mine.     Give it an honest try/ a chance if it was prescribed, as with most of these drugs, it takes time and dosage changes to determine usefulness.   

Val