Amazingly, the last 6 months have been easier than the last 6 years!  I still get the attacks, but not as much as I was.  This is normal.  They will increase again, but I am enjoying this relief while it lasts.  I get about 2 to 12 lightning attacks a day.  Two weeks ago, I went 3 whole days without anything at all.  Those were amazing days!!!  Last week, I had a constant attack that lasted 8 hours, followed by a dreadful “wiped out” feeling.  It is exhausting dealing with this disease.  You never know when its going to attack.  Having fewer attacks has allowed me to recognize the uniqueness of this disease.   I am normally, a very animated, and alert person.  I have no problems carrying on a conversation, and I am quick with my thinking and am very articulate. When these headaches strike, I become quiet, and have a hard time finding the right words to say in a conversation.  In my mind, I know exactly what I am trying to say, but it is as if  there is something blocking those words.  Like something wont let them process from my mind to my mouth.  Its confusing when it happens, because I know what I want to say, but part of my mind has been locked up, and I cannot say what I want to say.  People look at me like I am strange.  If I try to explain my head problem, they get uncomfortable and ease their way out of the conversation, leaving me alone, and embarrassed. 

However annoying these headaches become, at least I know that I am not the only one who suffers from them.

The last really bad headache that I had was in November 2008.  They have slowed down a lot.  I get 2 maybe 3 small attacks a day but that is it.  I am so happy!  I am able to get a lot more done every day because I don’t have to stop and wait for my head to calm down.    I don’t know how long this will last, but I am sure going to enjoy it! 

gina<><

Yes, I actually went TWO WHOLE DAYS without any attacks!  Amazing but true!  There is definitely a seasonal change in me.  They decreased this time last year too, so, if it goes the same way as last year, then, they will stay at a minimum until about October.  Lovely!!!  I have over the last year, been able to function better during an attack than I was able to before.   This is good, because every year they are a bit worse than the year before, so if they are more intense every year, and I am able to endure a little more ever year than the year before, then thats all the longer before I will end up having to take medicine and thats a really good thing. 

This last week was the first time that these attacks were felt in my nose.  have you ever went swimming and got water up your nose?  It felt like that.  It was as if the ‘lighting attack’ ended in my nostril, and it hurt.  For 3 days it was on my right side, and then it switched to my left side and stayed there for about 2 days.  One after the other.  It began in my head and radiated down and out through my nose.  The intensity had increased too.  They are more painful now.  My eyes water more from it, and so does my nose.  I get them every day (about 2-10 a day) but then I go through an episode of twenty to thirty a day, and they are of greater intensity and pain.  It is as if I have both Episodic Paroxsysmal Hemecrania, and Chronic Paroxysmal Hemecrania.  Hmmm, I wish there was more information.  Come on Doctors, we need you to figure this out so we can  remedy it, and maybe even prevent it all together.   Were counting on you!!

I wonder if I might have discovered the “cause” of my CPH.  When I was 3 years old, I climbed a 6 ft. slide, and was too scared to go down it.  So while I was contemplating, these 2 big boys started yelling at me and they pushed me off.  I fell 6 ft down, landed on my right side, sprained my arm, and got a cucusion.  A few years later, I  started getting strange headaches, and my parents thought my eyes were going bad, so they took me to am Optomologist.  He gave me reading glasses.  They did not help.  My headaches went away on their own a few years later.  But then they came back when I was in my 20’s.  And now I finally know what kind of headache they are.   I read about other CPH sufferers having a previous head injury, so it makes me wonder if this might really be something.  I wish there was more info out there so we would not have to wonder. 

Icannot sleep.  My head is once again my enemy.  My right eye is blurry and droopy and watery, and I keep getting one attack after another.  Not sleeping only makes it worse, but I can’t get comfortable enough to fall asleep.  Whats worse is that I get a lot of cold sores.  These cold sores –AKA Herpes Simplex — make me sick too.  Herpes Simplex resides deap within the nervous system, and when it decides to be active, it affects me in many different ways.  Depending on which side of my face the cold sore is growing, that side will be tender to the touch.  My nerves become overly sensitive on that side of my face and head.  Even my hair brushing against my cheek is painful.  So, right now, I am getting cold sores on the right corner of my mouth, and coincidentaly, that is the same side that my CPH is active on.  So not only is my head hurting because of the CPH, but the CPH is magnified by my over active nervous system because of cold sores.  FRUSTRATING!!!  I am irritated, because I want to sleep, but my body wont let me.            

This will pass.  It always does.  I just thought that if I write about it while it is fresh, then, maybe I might be able to help somebody else who is going through the same thing.  Somwhere out there, there is somebody else going through the exact same thing as me.  I am not alone.  I am very thankful that this is all that I have to endure. These burdens will pass from me, but some people are fighting a losing battle with cancer.  How scared they must be…and yet how brave.  I admire your bravery whomever you may be.  I pray you find peace in the night when you lie awake scare of all you are facing.  I pray that my Lord above will bring you comfort, and fill all of your days with joy. 

So, 2 weeks ago, i decided to quit taking my medication. The side effects got worse, and I could not bare it anymore. I became constantly tired. So tired that i could not drive, or do anything for that matter. I was increasingly dizzy too. So I quit. It took about 5 days for the effects to wear off, and now I am back to normal. Suffering my headaches, but able to drive and function. Until there is something else to treat my pain, I will continue in this manner.

So, its been awhile now since I finally discovered whats wrong with my head. I have noticed that it seems to be seasonal. for me anyway. These headaches, which I call thunder and lightning headaches, seem to be worse in the Fall and Winter than in Summer and Spring. Since I won’t be taking any medicine for it, I figure I will chart the changes inside my head so that maybe I can better understand them. Its as if something has taken over my head and it RULES!!! It seems to attack without warning, and continue attacking as long as it chooses to. There is nothing I can do to stop it. I have to let it run its course. On occasion, I do get a slight warning before a big one hits. Kind of like aftershocks, only, its before the big attack. Beforeshocks I guess I will call it. I get the beforeshocks ( they may be very mild to moderate) which last between 5 seconds to 1 minute, and I may get between 2 to 30 a day. Then the BIG ONE! The big one lasts anywhere from several minutes to 5 hours! There were a couple of times that they lingered on for several days after the worst of it was over. June of this year, I had a bad CPH headache that lasted 3 days.!!!My eyes were draining and my nose was running, and I just couldn’t think! It was awful!

There are other times that the beforeshocks will turn into several really bad little attacks that will increase in pain and last between 30 seconds to 2 minutes. They vary in pain and duration, and as usual come without warning. Each person that I meet seems to have a slightly different story than mine, yet the basic details are the same.

I get the shooting pain (lightning) through my head, my eye, my jaw, my ear, my shoulder, and my nose. Sometimes it feels as if something in my head is shooting a spear right through my eye. Other times There is a a pain like rolling thunder going through my head. Sometimes there might be the rolling thunder and then the lightning. There is never a system. Its always sporadic, and its never the same each time.

I have noticed, that not only do these attacks increase in the Fall and Winter, but they also increase when I do not get enough sleep, and when I eat poorly. I usually eat very healthy, but every now and then, I eat junk or sugar, and they seem to increase during those times.

I may not be able to eliminate These horrible CPH attacks, but at least I am figuring them out!

In the spring of 1999,While caring for my boys, I had my first headache attack. It felt like lightening bolts shooting through my left eye. My eye was watery afterwards, and my nose was a little runny. Soon, the attacks became more frequent (both sides of my head, and on all areas), and I learned to live with them. After about a year, they went away and were forgotten. Then, in 2003, They came back with a vengeance. I suffered for a little over 2 years, and then saw a Neurologist. She thought I had Cluster Headaches. So, I took meds for it, but it did not help. So, In April of this year(2007), I got a second opinion. he sent me to have an MRI, Which enabled him to rule out all other causes of head pain. That left me with 2 options: Cluster Headaches and Paroxysmal Hemicrania. My symptoms matched Paroxysmal Hemicrania more than Cluster Headaches, so my Neurologist had me take the only known medicine that helps with the symptoms of Paroxysmal Hemicrania. It is called Endomethacin. Side affects are extreme exaustion and dizziness. So, now, I am not sure which I would rather deal with; the headaches, or the side affects from the meds. While taking the meds, I feel so normal inside my head, but I am tired all of the time. All I want to do is sleep. I am dizzy too. Sometimes its worse than others. when I am not on the meds, I have between 2 and 30 attacks every day. They last between 30 seconds, and 2 minutes. Ocasionally, they can last several hours. Sometimes the pain is so excruciating that I just want to pop my head so it will feel better.The pain is like thunder and lightening inside my head. It Rumbles and shoots and aches–even down my neck. It interupts my life. I homeschool my 4 sons, andwe are in Martial Arts 6 days a week. I need my head to feel normal. If I take my medicine, then I have a hard time teaching my sons, and when I do Martial Arts, I end up tripping all over the place because of the dizziness. Hmmmmm…..I would like to talk to somebody else in the world who is in my same situation so I can find out how they balance their life and meds.

There are 2 forms of this disease: chronic and seasonal. I have the chronic form, which means that I get them all year around. I take 50 milligrams of Endomethacin 3 times a day. I think I will cut out the afternoon dose, and that will give me a few hours of not feeling tired and dizzy. That way I will be able to get some stuff done with my boys, and we could still attend Martial Arts. If this works, then I will report it in a few days.