I am SO please that I have found this website. You people 'Get Me'!!!!!  ;D

My name is Amy and I live in So. California. I'm 40 (almost 41) and had my first episode in August 2010. It lasted about 2 weeks and by the end I really did wish someone would have just shot me and put me out of my misery. I only had one attack every night (about 2am) with the intensity of about an 8 on the Kip Scale, with many (20 plus) shadows the rest of the hours every day. I went to the doctor and she gave me a prescription for a migraine (and for some reason it didn't do jack for my headaches... wonder why). But before I could get another appointment, they just stopped happening, so I promptly forgot about them.

At least until my next episode began last March 2011 and the bad ones came 2-3 times each night, with plenty of shadows the rest of the time. I found another doctor, who (after looking at my chart) gave me another migraine medication (which surprisingly didn't work either). So I got online and went to WebMD and learned about a little know headache called the Cluster Headache. I swear someone had been in my bedroom at night watching me! How else could they document my symptoms so perfectly? I called my doctor the next day and told him what I found out, he said ok and prescribed me another medicine. After taking a few that didn't work I looked up the name and uses and found out it was a third migraine medication. Back to square one...

My next episode was in late August 2010, and I just decided not to waste my time (or money) on doctor visits when they just refuse to believe me, so I suffered through them, after all, they only last a couple of weeks....

Flash forward to this year, late March they begin AGAIN! And this time I'm having 4-6 attacks (8 or 9 on the Kip scale) per night, and several (5-6 on the Kip scale) during the day with lots of shadows in between, and it's been over a month. My co-workers keep trying to get me to try using their migraine remedies. Then I found “Simon’s Letter”, and NOW they finally have an understanding. I haven't heard the word migraine out of their mouths all day! I am planning on trying to find another doctor in hopes that I can get a proper diagnosis and maybe some relief from this HELL I'm living in.

Wish me luck!  ::)

YES!!! Another RIGHT coaster! There are so few of us normal types on this board.  ;D

Where abouts are you? I have a good neuro in the east san diego, La Mesa area. There is so much available to you so you don't have to suffer through the attacks untreated anymore. Start with this link:

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

Breathing pure oxygen will abort an attack for me in about 6-8 minutes. Beats the heck outta the old 90 minute attacks. It should be your first line abortive.

Let me know whereabouts you are and lets get you referred to a neuro who knows CH. :)

Joe

Thanks Joe!

I'm up in Orange County (near the border of LA County). Because my episodes weren't 'that bad' before I didn't do much research until now. This time around I'm REALLY feeling it and have the desire to do something about it. I also feel I'm pretty lucky, in that the worst part of my attacks only last about 20-30 minutes. Which is never long enough to get to an ER! And I think I'd drop dead if one actually happened while I was in my doctors office.

I'm doing tons of research and hopefully this time around I can find a doctor who will listen.

Here's a listing of docs near you that other CH'ers have used and recommended:

Los Angeles:
Dr. Antonio A. De Salles
UCLA Medical System

Dr. Stephen Graff-Radford (DDS)
Cedars-Sinai

Dr. Paul B. Kazimiroff
Dr. Alan M. Rapoport
David Geffen School of Medicine at UCLA
Mountain View :

Dr. Kenneth S. Peters
Northern California Headache Clinic
Newport Beach:
Dr. Phillip O'Carroll
Newport Beach Neurologists
San Ramon:
Dr. Eric Collins
Dr. Kulveen Sachdeva
Santa Ana:
Dr. David E. Sosin
Santa Monica:
Dr. David B. Kudrow
Dr. Alan M. Rapoport
Stanford:
Stanford Headache Clinic

It's a start. Here's a quick read on the basics of how I treat my CH:

You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hi Amy

Yes, you're home. You've found the most amazing place for anyone with CH to find.

What Joe wrote is spot on, plus he will have all the local info too.

Whilst at the moment your CHs are reasonably manageable without any treatment, it is quite possible that this will not continue, so it's vital for you to get on board with a good neuro who specializes in headaches to get everything ready in case you need things.

Keep reading and you'll soon be an expert compared to most doctors on anything CH related.

I'll be seeing a new doctor next week and plan to bring print outs of as much of this website as I can. I have an HMO so getting a referral approved for one of the above doctors may be difficult, but I'm becoming a bulldog with this. I want some kind of relief. Or maybe I'll educate a new doctor enough that we'll be able to add a doctor to your list!

I'm educating as many people about CH as I can. I honestly believe there may be more of us than we think, they just don't have the proper diagnosis.

Thanks again for all your help so far! I'll keep you posted on what the new doc says  ;)

Quote:

YES!!! Another RIGHT coaster! There are so few of us normal types on this board.

Uh, Joe?  Unless you're looking down at the U.S. from Canada, you're on the left coast.    ;)

Hello everyone,

Can someone give me a list of things that they track daily/weekly.

Also, I'm on page 7 of the '123 Days PF..." and I've already stopped long enough to go to the store and purchase the cocktail ingredients! I'm going to start with 1/2 a dose and work up from there. After doing a lot of reading on here (since I was up anyway last night  :( ) I'm hoping to avoid needing prescription medications at all. So far to date I've been able to 'suffer through' my bi-annual episodes without anything, but if I have to start somewhere I think I'll start with the Batch Remedy.

I do still plan on going to the doctor for an official diagnosis, and hopefully educate him on CH. I'll keep you posted...

Thanks Batch for the cocktail suggestion.
Thank you Joe and Mike for your help and tips.
& Thank you Linda for correcting Joe on which cost we live on... the correct coast  :P
Amy

Linda_Howell wrote on Apr 28^th, 2012 at 11:55am:

Quote: YES!!! Another RIGHT coaster! There are so few of us normal types on this board.  Uh, Joe?  Unless you're looking down at the U.S. from Canada, you're on the left coast.    ;)

I agree with Joe, it's the right coast of the Pacific Ocean and I'm down on the left coast here in NZ.

Mike NZ wrote on Apr 28^th, 2012 at 7:51pm:

Linda_Howell wrote on Apr 28th, 2012 at 11:55am: Quote: YES!!! Another RIGHT coaster! There are so few of us normal types on this board.  Uh, Joe?  Unless you're looking down at the U.S. from Canada, you're on the left coast.    ;) I agree with Joe, it's the right coast of the Pacific Ocean and I'm down on the left coast here in NZ.

You got me there Mike!  [smiley=clap2.gif]

It might be nothing, but thought I’d mention it… when I was little (between the ages of 8 and 11) I use to get really bad nose bleeds in the middle of the night. I had to have a plastic cover over my mattress because my mom could not afford to purchase another one. My mom came in to check on me every night because she was scared that one day she would find I’d bled to death in my sleep, because I didn’t wake up unless she woke me up. Anyway, it was always from the same side… my left, and always around the same time of year… March/April. My mother finally took me to the doctor, when I was 12, and he cauterized the left nostril. The nose bleeds stopped.

Then when I was about 17 I was driving along a tree lined street. The sun was shining through them from my right side, but the flash of sun between each tree did something to me. It felt like someone had stabbed me in the left eye. I had to pull the car over it hurt so bad. Within about 20 minutes it was gone and I continued on my way, never thinking about it again until just this morning. I had assumed it was a migraine because it was brought on by light and hurt like a mother f’er (or at least I thought that was the worst pain... yeah, now I know what real pain is) and it went away and that’s never happened again. When I was in the Army they sat us in a room with a flashing light and nothing happened then. Just the one time. But why did it hurt the left side and not the right??

So, did cauterizing my nose have anything to do with my cluster headaches now? Or was I doomed to dance with the beast anyway? Anyone have any thought on this one?
Side note: Started taking the Vitamin/Mineral cocktail yesterday and only woke up twice last night with minor (Kip 3-4) headaches. That was nice! Can’t wait to see if it’s going to get even better. I’m in uncharted water right now, because my prior episodes only lasted about 2 weeks and I just started week six this time. Still going to the doctor this Friday too. I want an official diagnosis and a prescription for O2 if I can get it. I’m trying to stay away from any prescription drugs, don’t want to become dependent on them, but if I must go there eventually I want to know all about them before I start.

Thanks for any input!