Hi All,
I've been 'lurking' for awhile trying to get some information to help deal with the CH's.  I have tried many suggestions on the boards and today I have finally hit that frustration point where I am at a loss and very desparate. 

OK, my run down....
35 year old male.  Healthy.  Only medical 'problem' prior to headache problem was anxiety for which I take 200mg Zoloft and 2-3mg Xanax daily (for ~13 years).

So about 2 months ago I had a bad headache one afternoon.  The next morning I woke at 6:15am from a sound sleep with the stabbing left eye pain.  Went to doctor, he gave me Maxalt and Fioricet.  Next day...6:15am same thing.  Went to ER.  They gave me shot of imitrex (didn't help), shot of morphine (didn't help) then shot of Toridol 30mg (helped). CT scan fine.  Discharged with script for Percocet 5mg. Next day woke up 6:15am again, same story... Took 2 percocet which let me sleep for another hour...then back to the ER.  Another shot of Toridol.  Worked again. 

I followed up with GP and he gave me some Toridol pills to have around.  Can't take them for more than 5 days in a row. 

Next 5-6 weeks were ok.  Had a slight headache and took a couple of advil every day which worked fine.  Worried about a rebound but have a high pressure job and a wonderful 2 year old that I want to be pain free for. 

SOOO (sorry for rambling) about 2 weeks ago the stabbing headaches came back.  They were not as regular as they were before.  When they came back my neuro was out of office so I went to ER again for oxygen and Toridol 60mg.  Helped but not as much as last time.

Went to neuro...gave me Prednisone 50mg for 5 days.  Precocet 10mg.  Took the Percocets for 1.5 days.   Never again!! Worst pain ever.  Like I made the beast angry.  After 2 days of Prednisone I had my first truly PFD in months.  I was whistling and happy as a pig in slop! The next day the headaches were back.  :'(  I have controlled them a little with the toridol pills. 

Saw neuro on Friday after my brain MRI this week which was clean.  He gave me O2 script per ch.com's instructions, a script for sumavel dosepro (basically imitrex) and topomax for long-term.  Took my first shot yesterday afternoon.  Seemed to help a little.   By night time it was worse again though.  Woke up at 2am (~ hours after falling asleep) and pain was horrific.  Took a shot of imitrex and tried the O2. Provided very little relief but enough to fall back asleep for 1 hour.  Then back up again and did some O2. 

Now I've been up for the day since around 6am and I don't know what to do.  I've maxed out on the imitrex. The O2 doesnt seem to be working (fyi - M2 tank, 15 lpm with NRB mask) although I'll keep trying.

The back of my head and neck on the 'bad' side hurt a lot too.  Does this happen with anyone else? I dont know what to do today. It always seems worse on the weekends for some reason too (more sleep seems to be worse).

OK so for the kicker here....just found out the wife is preggos.  So happy but want to get pain free for her and the little guy ASAP.  I am desparate and truly sitting here not knowing what to do.  I could take a toridol pill but that's about it.

Thanks all! Your advice to others has carried me for the last 6-8 weeks.

Your doc seems somewhat knoweldgeable, you got really lucky there, that being said, it takes a lot of trial and error...and the error hurts....to find a routine that works for you. I'm not suprised the pred gave you relief, at doses as low as 30 mg a day it provides 100% relief. Sadly, you can't take it long term as it's way too harsh on your body! I use it as a transition drug, a 2 week taper while my lithium builds up.

I've never tried Topomax as a prevent, it's not one of the more popular prevents, partly because of its side effect of making you loopy, many have nick named it Dopey-Max!

Go to the section "Getting to know you"...the posting "Another newbie to your site" and read the posting by Bob Johnson on the use of Verapamil as a prevent for CH. It's an effective prevent for many.

I use Lithium as my prevent. I'm 50, episodic for about 32 years. At 1200 mg a day, Lithium will block 60-70% of my attacks. At that dose no one knows I'm on it, so don't stress the hollywood stereotypes of a mouth breahting zombie on Lithium!

Some tough cases have combined the verapamil and the lithium to get relief, often referred to as "The Chronic Cocktail." Also, check out   clusterbusters.com   for alternative treatments.

On the oxygen, try it at as high a flow rate as your regulator will handle, then back it down each time to find the best flow rate for you, some find relief only at flow rates of over 25 LPM. I drink an energy drink as I do the 02, it seems to delay the come back attacks.

Consider adding the following regimen, Calcium Citrate with Vit D, Magnesium and Zinc, washed down with lemonade up to 4X a day. Alters your arterial PH maiing you less succeptible to attacks. Got me through a rough high point in my last cycle.

Welcome to the board, hope we can help you, congrats on the upcoming new arrival. Ours are 26 and 24 now, still the lights of our lives! :)

Joe

Guyute, First of all, welcome. I've used toradol injections in the past. They only worked a little to abort, did not prevent. They are also limited to 2x/week. Not a good solution for me. My first neuro also started me on Topomax and lots of Vicadin/Percocet. The Topomax made me very loopy, dizzy, and didn't do much to slow down the CH hits. The Vicadin is a bad path, addictive and can cause what are called "rebound" headaches, actually perpetuating the cycle. Verapamil is definitely a much better path for CH (for most), as are Imitrex injections or inhaler. Other factors come into play, though, such as heart condition, etc. I'm one of the chronics on Verapamil and Lithium with Imitrex and O2 as abortives.

Pain in the back of the head, same side as ch, is fairly common. I get neck pain as well, but it's caused by the stress of the headaches. Worth getting checked out, though.

I'm curious if you've been properly diagnosed. Topomax is not the preferred preventative for CH. It's a good idea to see a headache specialist. Many neuros just aren't that familiar with CH since it's pretty rare.

Oh, one other thing... cluster hits are known to occur more when you relax than when your intensely focused or stressed. Go figure. Not great for vacations, weekends, sleeping, etc.

-Chris

Deep six the Percocet!  Might be good for a toothache, but addictive (been there) and won't do anything for the CH.  I was put on it when first diagnosed years ago (long before this board.  In fact, long before PC's :P)  I was driving to work in a textile mill so stoned I couldn't read my time card, running machinery, but still hurting so badly I was crying with one eye shut.  That stuff is hard to get off of once you get on it for long. 

If O2 isn't doing the job for you I would suggest you look on EBay for a higher flow regulator.  YOu already have the script, so you have the O2 available.  Also, click on the CH.com store (on the left in yellow) and order the O2ptimask.  It was designed for clusterheads, has a three liter bag and is much better than the cheap NRB masks you get from the oxygen suppliers.  25 lpm will usually allow me to abort in about 5-8 mins, where 15 lpm took 15-20.  You can find a regulator for under $50, and the mask is $27.50.  Well worth the expense!

Jerry

Thanks again, all.  It was interesting to read about what Chris said about them coming on during relaxation as opposed to stress.  My wife and I have been trying like hell to figure out why I am so much worse on the weekend.  I suppose this is at least one theory.  She has promised to try and stress me out more.  :D

I haven't gotten the script for Topamax filled yet precisely bc I wanted to see what CH.com had to say first.  I am moderately happy with my neuro so far but I do believe others are correct when they say I need to find a CH or headache specialist.  I looked on the OUCH links for recommended doctors and there is one practice about 1.5 hours from my house.  Problem is they're not a self-referral practice so I'd have to ask my neuro to write a referral and then they call you if they 'take your case'.  The same situation applied to a prestigious teaching hospital nearby. Akward.

Re: the Lithium, any thoughts on the interaction for someone like me who is maxed out on Zoloft for 12+ years?

I am pushing on with the O2 and will be buying the suggested mask and possibly a regulator that goes higher than mine. 

Again, thanks to all.  I'm almost through my pity party/why me phase!

Don't feel bad about partying. :D  We all do at one point or another.  When I'm feeling really down I head for this place first.  It never fails to make me realize I don't have it all that bad.  Then I yank myself up by the seat of my britches and get on with life. 

It is also good sometimes just to use this place to vent a little bit.  Venting is good.  Whining is bad.  If you start whining we'll tell you. ;D

Jerry