I am ashamed to admit it, but I used to be a registered user of this site who posted fairly regularly, but once I found preventative meds that I thought would work for a while, I kind of drifted away from clusterheadaches.com.  Since then, I have moved, changed e-mail addresses a time or two... I couldn't even remember my old login information because it had been so long.  

Anyway... for my last couple of cycles Depakote at 2000 MG per night with 180 MG of Verapamil was great.  Any hint of a CH cycle coming through and I would begin my preventative meds.  In the last couple of cycles I had a random headache break through here and there but they would be very mild.  My last cycle was three years ago, and I was beginning to think I might have them whipped.  I should have known better, though.

On Thanksgiving they came back with a vengeance.  (I had been having a few before then, mostly shadows.)  The night before Thanksgiving I had stayed up kind of late, disrupting my normal sleep pattern, and I think that really set them off.  

I had a fairly large stockpile of Imitrex saved up, but these headaches have really beaten me down.  At one time in my life I would have 1-2 headaches in a day, then nothing the next, then maybe 1-2 more the next... you could set your watch by them.  This cycle has been very, very unpredictable even though my sleep patterns are fairly normal.  Plus I am getting 3-5 headaches a day.  Most of them are when I sleep... when I first lie down, and then I will get 1-2 more throughout the night.  I am getting a few throughout the day and then sometimes even some in the evenings, which used to never happen.  

The worst part to the story is that I am very close to being out of Imitrex injections.  My insurance won't pay for more than one prescription a month of the injections.  I'm going to have my doctor call my insurance company tomorrow and beg for more if I can get in to see him.

I have tried oxygen in the past.  It's something I'm considering asking my doctor about again.  It didn't work before, but this was many years ago (at the time I was diagnosed, which was somewhere around 15 years ago.)  I don't think the flow rate was very high.  

What I am looking for is some advice.  I don't know what to try next.  I don't know anything about oxygen, really.  I also need to look into some new preventative meds.  Has anyone ever been on a higher dosage of Depakote than 2000 MG?  Any advice I can get would be greatly appreciated.  

I do plan on becoming an active member of these boards again.  

Brandon

Hi Brandon. We have not met, my name is Barry. o2 is all I use to abort:
100% o2 at least at 15 LPM with a non-rebreather mask or better. No outside air what-so-ever, and get on it at the very fist sign of an on-coming hit.

These folks here are so awesome, in just two years I have learned so much about CH's, and how to help deal with them. The result is that I am having, SO FAR, the easiest cycle ever, but time will tell as I usually go a full year per cycle, with a break of last time of eight months.

Nice to meet you.

  Barry :)

Houdy B
glad your back
the bb

The more I read on here the more I realize that I am so fortunate.  If I had a cycle that lasted a year... gosh, I don't know how strong I could be.  I don't know how I could face it.  Then there are the chronic sufferers.  My heart goes out to all of them.  I just can't imagine...

I'm going to my doctor tomorrow to talk to him about O2 therapy.  I'm hoping this time around it works.  

B. Simpson wrote on Dec 14^th, 2008 at 10:06pm:

If I had a cycle that lasted a year... gosh, I don't know how strong I could be.  I don't know how I could face it.  Then there are the chronic sufferers.

Welcome back!

As a chronic sufferer, that gets quite a few hits, daily, I can tell you how you would face it, by just doing it!  There isn't any other choice.  Just as you are dealing with the hits you have now, and you have had in the past, you would deal with the chronicness, and if you ended up with more hits, you would deal with that too.

Us clusterheads are a stubborn, strong bunch of people.  We would just deal with it, just like you would.

I agree with the others, GET OXYGEN!  There are two different threads, in the medical section, at the top, that should answer most of your questions about oxygen.  If you have others, feel free to ask them.  If you want, I can PM my phone number, and I would be happy to talk to you, on the phone, about any questions that you have.

As far as the Imitrex goes, read the information, under the tab, on the left side of your screen, imitrex tip.  That will stretch your supply up to three times longer, for each vial.  Try it, it WORKS!

Good luck, and ask away!

Chuck

Welcome back....

O2 O2 O2 --- Listen to Chuck and if you have any questions call him. He's a little weird, but will 'splain it to you...

Red Bull (or another energy drink with at least 1000mg or taurine in it) at the first sign of a hit - chug it down. It will sometimes abort a headache.

Melatonin at night (I use 12-15mg) will help you get thru the REM sleep and get some rest. It OTC and you can get it at the grocery store or at the pharmacy.

The Imitrex tip is a good one -  for some reason it doesn't take a whole dose for CH like it does for migraines - thus you can get three shots instead of one. More bang for the bucks.

And you'll find that us old chronics around here are the most optimistic folks around here... we LIVE between hits and take the hits as a fact and get on with things when they're over. Then we spread cheer and joy to all who will listen to us. :-* :-* :-* Ok, so we get a little bitchy ever once in a while (even Chuckles), but most of the time we're cheerful... After all - it's just a headaches ::)

Hugs BD

Brandon, Welcome back! You have heard from 2 of the best........and 02 is definitely the way to go. Get to your dr, get a scrip for 02 and begin to abort yuor hits!
Plenty here who can help you....and it's nice to have you back!
Wishing you PF!

aS FAR AS cHUCK....wellllllllllll...yeah, he's a card- carrying member of the Looney Tunes society :Dbut SOME around here respect him....bleaugh!! :DLOL! :P

CATHI

Brandon,

welcome back! I'm Sanna - nice to meet you. :)

I'm currently episodic and trust in energy drinks as my treatment with ch. I've been a chronic in the past, and I can tell you that it's nothing to be scared of - it that happends again, I can deal with it. We all have strength we don't even know about until we'll need it.

PF days your way,
Sanna

Brandon, your story is almost IDENTICAL to mine.  I went to a great Neurologist 2 days ago and he started me on Verapamil 240 BID (480 total per day), Dapakote 100 mg per day, and a Prednisone taper for 10 days.  Since begininng this cocktail of meds I have flet better than than at any point over the past 30 days.

Also, get yourself some OXYGEN prescribed!  This si the first time I have tried it in 14 years and it worst outstanding as an abortative.  I only need 8 lpm for 10 minutes (I guess I'm lucky).

Thirdly, try taking a Relpax or Amerge (Relpax works best!) just before bed.  I will help if not entirely eliminate the headaches at night.  Relpax statys in the system for 6-8 hours.  I find that taking the Relpax before bed gives me a few solid hours of sleep.

Good luck!  Hang in there.  "This too shall pass!"

Another strong vote for oxygen here. For 02 to work, your lungs must get only pure 02, no outside air, no exhaled air. This is best accomplished by using a high flow regulator, at least 15 LPM, and a non re breather mask. The re breathers, the nasal canulas and the low flow regulators tend to be a recipe for failure..

I'm no doctor so take everything I say to your doc...but lithium has been working great for me for many years as a prevent. 1200 mg a day while on cycle blocks 80% or so of my hits, oxygen and the occasional imitrex jab kill the rest. If the depakot won't do it, it might be worth a shot. Takes a lot of blood work the first few weeks but then it's a cake walk.

Glad you're back, sorry it was the beast that chased you here!

Joe

I don't know if I mentioned it before, but I have been in your situation before, twice, and nothing was working so I had the doc prescribe a prednisone taper for 10 days.  I am trying this for the second time in 15 years right now and I am on day 2 (along with Depakote 1000 mg and Verapamil 240 BID).  Today and yesterday are the best 2 days I have had in the last 30 days!  I think it's the prednisone working more than anything.  

My advice, stay with your Depakote and Verapamil and if they don't work get the prednisone - it's worth a try!  Prednisone does a great job of helping to jump start the system for MANY different disorders but you don't want to take it for very long.

B. Simpson wrote on Dec 14^th, 2008 at 3:54pm:

I am ashamed to admit it, but I used to be a registered user of this site who posted fairly regularly, but once I found preventative meds that I thought would work for a while, I kind of drifted away from clusterheadaches.com.  Since then, I have moved, changed e-mail addresses a time or two... I couldn't even remember my old login information because it had been so long.   I do plan on becoming an active member of these boards again.   Brandon

nothing to be ashamed of. when you've gone through this kind of extreme pain i think it's natural to want to forget that it ever happened.

welcome back

i've been pf for almost a year now. i've come to terms with the fact that i will endure another horrible cycle in the future.

best advice i can give you is don't get caught with your pants down. keep some o2 handy even if you think you will never ever need it. even though i'm pf i still get on the board and try to feed my brain.

o2 doesn't work for everybody but it doesn't work for anybody if the flow rate is too low.

as far as your meds go, give things time to work before you decide that it doesn't work.

try not to over do things in desperation.

if your getting your butt kicked or you have questions just post it. no question is too stupid.

Hi Brandon. I'm right there with you!
I haven't been around since my CH's 'went away' 2.5 years ago. I have been using Depakote ER 500mg, 400mg magnesium, 6mg melatonin the entire time without any CH's until a few weeks ago.
This board has been my salvation in the past, and continues to be. I learned here 5 years ago how to properly use O2 as an abortive. This works on almost all of my CH's. Imitrex injections for the rest. I get to see my Neuro next week and plan out what to do next and to get a new script for the imitrex.
My personal favorite theory on what triggered this attack is it came right after a trip to Anchorage, Ak. I think going from normal winter daylight hours to almost no daylight (I was working indoors for the 4 hours the sun was up) really messed with my circadian rhythm. Between that and the 2 days in a row we worked 18 hours, plus 4 hour flights there and back. IDK, pick your trigger.  

Hey B. People come and go. Sometime there is a bitching out upon return and sometimes not, so it is not you, so don;t let it worry you as there is nothing to be "ashamed" of.

welcome back!

Brandon, welcome back to the boards!

You've gotten some really good advice here. One thing I'd like to mention, is that Relpax and Amerge are both triptans, like imitrex. You can't mix triptans, you have to wait 24 hours between taking one kind, to taking another kind. Melatonin works well for most people at night, most people take between 3 mg and 12 mg to sleep. It can take a few days to start working, so don't be discouraged. This will allow you to use trex in the daytime if needed.

Also, you can ask your doc to prescribe vials of imitrex, and syringes. One vial is one dose, and it's much easier to split the shots this way. Insulin syringes have tiny needles, and don't cause as much discomfort when taking a shot. 1/3 of a shot works well for some, and you are less likely to feel the side effects, and have fewer rebound headaches.

Get the O2 at 15 to 25 LPM, with a non-rebreather mask. Chances are it'll work, with the correct flow rate, and getting on it as soon as you start to get hit.

Give the energy drinks a shot. They do help. And ask any questions you may have!