Hi all.  This site has been invaluable over the past few weeks.   I have been getting CHAs for over 10 years.  it wasn't until 4 years ago that I really started having specific cycles.  Now the cycles are getting worse in terms of amounts of HAs per day, HA intensity and cycle length.   

I have always used Imitrex Injections but with the past two cycles, I am getting so many HAs a day, that I am concerned I am taking to much.   I have been trying the Qtip method which seems to work however, using only 2-3MGs instead of 6MGs seems to take much longer to kick in.   Last night, I was having 30-40 minutes of what I consider KIP 8-9 pain before the trex halted the headache. 

I started Verapamil last year and I though it had worked well as it seemed to cease the cycle soon after starting it.  This cycle however, it has been unhelpful.  I am on 240 MGs at onset and have gone up to 360 without change.

I started o2 this week at 7-8 L (the highest the regulator will go).  o2 works for light HAs and shadowing but does nothing for the baddies.  I have kicked the tank in 4 days and of course, the o2 place doesn't do refills on weekends.  LAME!!

The Neuro put me on Gabapentin this week would IMHO made my headaches much worse. 

Ok, that is my history... here is my vent... I am getting to the point of dispair.  I have a 1 year old (my and my wifes only child).   She is great but at the stage of whining as she doesn't have the words to speak what she wants.   I have been shadowing all day and my face still hurts from last nights greatness.  ever time she whines, it is like sticking a fork in my eye.   My wife has been taking all the parenting responsibilities and for that, she is my angel however, she is sad that she can't do anything for me and is really angry at the Beast.   I try to hide the beast from her as I don't want to burden her.  The pain has been so excruciating the past week though that I can't hide it any longer.  I am running out of trex, am out of o2, and the preventatives aren't doing anything.   I even tried ritalin today with no effect. (i have ADD and used to take it so had some leftover).   

I am fearing the KIP 10 which I keep telling myself, I haven't had yet.  I am scared to go to sleep.  I am in pain from last night.  I took off work thursday and Friday (the first time I have ever taken off work for headaches in a very long time).  I can not see how I can return to work next week if things are like this.  I am almost 2 months into this cycle and it just gets worse.  Usually it only lasts 4-6 weeks.  I am afraid that with the cycles getting worse, they are going chronic.  I am afraid that out of desperation of pain, I will take to much meds accidentally.   The rational side of me says this is going to end soon and I will find a better preventative.  The worried, anxious side of me is really freaked out.   I am worried that these HAs are going to ruin all that I have worked so hard to build.   

vent ended...   Thanks for listening.  Thanks for being an outlet to turn to in my darkest of days. 

Hi Clusterheadken,

I'm glad you found this site. You'll find a lot of good, accurate information here and a lot of big-hearted, knowledgeable folks more than willing to answer questions and provide whatever support they can in your fight against this monster.

You might also familiarize yourself with the companion site to this one, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and it's new Message Board. There you'll find the discussion centered more around alternative CH remedies rather than the more mainstream ones discussed here.

It's good to have you aboard.

Ron and Bonkers

I hear you and understand your desperation.  Your first child is difficult to adjust to as it is, though they are so precious.  They keep going and going regardless of how you feel.  Maybe you could try spending a few structured minutes each day with your child, say 10 good minutes twice a day and then disappear to another room during your cycle.

Have your tried drinking Red Bull?  People here like it for shadows.  They also seem to have luck with Melatonin at night.  You aren't drinking any alcohol, are you?  I'm just trying to figure out why your cycle is hanging on, however, I have heard many people say that recently.  Mine wasn't any longer this time (my usual 8 weeks), but it was intense!  I also use Verapamil as a prevetative and I use 2.5mg Zyprexa as an abortive (this was my first time for that).  I really worked for me!  The cautions are scary, but that is for people that use it in higher doses for a prolonged amount of time for a different reason, so don't let it turn you off.  It also made my feel rather pleasant.  For me, when I took one at the onset of a HA, I would be pain free for about 30 hours.

Regardless of the treatment, I have found that anything that is great in preventing or aborting also has the potential to exacerbate the HA's when it is leaving my system. 

Good luck!!!

Hey Ken,

Well I figure this is likely just a longer episode, and you're not going chronic. Thats what has happened with me over the years, although besides experiencing longer episodes I've had longer remission between episodes.

Sucks that its taking so long for the injections to kick in. for some CH people an entire attack lasts less than 40 minutes! Not me or you though unfortunately.

Since you had some success with 7-8 LPM O2 for shadows I have to wonder if the high LPM non rebreather approach might work on the baddies. I found that it did on my daytime hits at least. What if you were to just really go for it, even get a demand valve for the O2, and just become the most full on power user possible, hyperventilating and everything? I would hope that would do something for you.

Neurontin has worked for me, but keep in mind it takes a while to really kick in. Longer than a week I think. For all I know it could making you worse as you suspect, but there's that possibility that it just hasn't kicked in yet and you're worsened because you're reaching peak cycle (?).

Hang in there! It's quite possible a month from now you'll just be done with this episode and ready to forget the terror and despair. I think there are a lot of people here who know that terror and desperation all too well.

Keep us regularly posted on how things are going, good or bad, you never know when the answer for you is going to come shining thru.

Ken,

Sounds like you need to up your flow of O2. E-bay has regulators that go higher than 8 liters. And they're not that high. 15-25 liters are the recommended flow rate around here with an optimask (ch.com store has them). 7-8 liters just don't work for MOST of us.

You might ask your doc for a pred taper while the neurotin starts working (sometimes that takes a while to kick in). If it keeps making them worse - call your doc and get something else (it made me nuts and I couldn't take it, but that was ME). Lithium, verapamil, topamax are others that some of us take for prevents. But they take a little while to get in your system.

Melatonin at night works for a lot of us to help get rest at night. Gets us thru the REM sleep and helps us get some rest to get us thru the day (6-15mg). It's OTC so it's not hard to get.

Red Bull (or an energy drink with caffeine and taurine) at the first sign of a CH sometimes will abort a hit.

Nuther thing (no one mentions it much) drink LOTS of water (see Water X 3 on left side). It works for some people. Worth a try.

Hope you find some releif soon...

Hugs BD :-*

Thanks so much to all that replied.   it was very nice to hear from other sufferers of this horrible affliction.  I definitely feel less alone and it lifted my spirits a bit.  Fortunately, last night wasn't as bad as it has been.   Perhaps the neurontin (gabapentin) is starting to kick-in.  Thanks for telling me that neurotin takes a little while to be helpful.  I will give it a little longer.  If not, I will try something else.  My medicine cabinet is starting to look like a pharmacy.

To answer your questions..
* Alcohol?  No Way.  It can cause a HA for me even when not in a cycle.
* Red Bull?  I buy it by the case now.   Keeps me up at night but does help with the shadows usually (this time not so much though)
* Pred taper.  Have been using that the past few cycles but didn't seem to help with this one. 
* Water.  I started sucking down that last night.  Does seems to help a bit.
* o2.  I think I may have figured out why it wasn't working well.  The mask the o2 people gave me was missing 1 of the 2 plugs that prevent outside air from coming in while inhaling.  I re-read the oxygen link and will test again when I pick up more o2 tomorrow.   I also plan to invest in a regulator and better mask.


Well, again, thanks you all.  May your headaches be less painful.

Ken

In the meantime, tape up the holes on that mask and simply move the mask away from your face a little to exhale. You want to take in nothing but 100% O₂.

hey ken heres some options for you

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

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

hope that helps ;)

Hey Ken
    Welcome   and hang in there, we are here for ya!

Here's a suggestion for your little girl.  Make a special box that has things in it that she doesn't normally get to play with (it can be anything).  When she starts getting on your nerves too badly, pull out the *box* and let her play with the things in it.

Helps you out and helps her too (of course, you might have a battle royale when you try to get her to put it up).