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This Is My Story (Read 2150 times)
KevinE
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This Is My Story
Oct 19th, 2009 at 12:11pm
 
     Hello, everyone! My name is Kevin Entzminger Jr. I'm 23 years old, originally from Columbia, South Carolina, but I live outside of Atlanta, Georgia. I've been dealing with these headaches for about 10 years now. I remember the first time I felt one when I was 13 years old. I literally leaped up from out of my bed and started running around the house like a banshee. My family thought I was possessed, but I knew that the right side of my head was on fire.

     I generally have my cluster headaches on the right side in the early fall season. Not exactly sure why, but typically between August - October is when mine occur. Last year, I had a severely stressful period of my life, and now, I assume it's the trigger of my cluster period then. It lasted for about 3 weeks, four to eight times a day and night, 15 - 30 minutes. Without warning, the pain intensified, my right nostril started oozing, my right eye would turn bloodshot, and of course, the pain of right head is far greater than anything I've ever experienced. My lover witnessed this phenomenon in me and was terrified! As he watched me slam my head against the wall and carpet, I think he was more scared that I was going to either kill myself, or because he was powerless to stop it. You try to tell people about these cluster headaches, but they believe it's just a migraine. I also suffer from those, too, and trust, this pain and FAR greater than any migraine. At least with a migraine, I can get some type of sleep, but when these things occur, I CAN NOT sit still. It's like laying down makes it feel worse. Having your nose run or feeling like a hot golf cleat is being continuously stomped in your head is not a great feeling at all. Even once the pain is gone, I still have a nagging headache. Not as intense as the cluster, it's just this nagging headache so it's almost as though I get no relief.


If stress is my trigger, financial issue would be my culprit for the period I'm going through now. I noticed a pattern though. Last year, I had headaches for an extended period of time, then suddenly BOOM! My period began. This year, same situation. I dealt with normal headaches/migraines for a month, saw doctor after doctor - no help. A few days ago, my period started. I went to the emergency room and they gave me some medication that didn't do anything but laugh at me and the headaches pressed on. Naturally, my lover who flew home from a business trip early in Ohio knew exactly what it was and consoled me to the best that he could.

I've finally gotten the opportunity to see a neurologist this week and I couldn't be more grateful. These headaches have affected my life, my job, my friendships, and I sit and panic worrying about when the next one is going to occur. When the headache is over, all I want to do is just rest because my energy is totally wiped away... not to mention having a snotty nose can get quite nasty - lol. Just trying to make light of the terrible situation.

I'm sure my story is no different than anyone else's. I'm only blessed that someone... some people know exactly what I'm feeling. My Mom and Dad back home worry, my lover is scared, my great job thinks I'm crazy, and friends think it's a migraine. Fact of the matter is, I'm suffering... but surviving. All I can ask for is your prayers through my period, and I pray for those who are also dealing with these. I know it's no joke. I'd appreciate the support.
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Martin
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Re: This Is My Story
Reply #1 - Oct 19th, 2009 at 1:20pm
 
Kevin, sorry to hear that cluster headaches are interfering with your life.

Ask questions on this board, you'll never get more passionate and and well thought answers than you will on this site.

Some advice I'd propose, as another 23 year-old sufferer:
1. Headache log.  Keep track of when the headaches come, how long they last, what you ate, what medicine you devour to stop the pain, etc etc. 
You mention triggers such as stress in your life; for me, I cannot find any trigger.  My headache log has just shown to me that 2am at 10am are my common hit times, usually between july-october.  Nothing else (stress, food, sleep) has affected them.
2. Get a good doctor.  Check the links to find proper, knowledgeable doctors in your area.  OUCH is a good resource.
3. Oxygen, verpamil, sumatriptan are very commonly used treatments for the pain by people on this site.  Oxygen is very safe, very cheap, and very effective at stopping the pain.  You need to seriously consider working on getting medical 02 for your home.
4. HANG IN THERE. The pain is bad; I'm sure.  But you've made it 10 years already, so I know you can do it. 

Take care, good luck, and hope the headaches don't run your life!
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Potter
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Re: This Is My Story
Reply #2 - Oct 19th, 2009 at 2:52pm
 
  Oxygen is gonna rock your world.

               Potter
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Marc
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Re: This Is My Story
Reply #3 - Oct 19th, 2009 at 3:26pm
 
Potter wrote on Oct 19th, 2009 at 2:52pm:
  Oxygen is gonna rock your world.

               Potter


Yep.

Marc
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Tweeg
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Re: This Is My Story
Reply #4 - Oct 19th, 2009 at 4:05pm
 
Hey there and welcome buddy Smiley Another 23 yr old Smiley
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bejeeber
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Re: This Is My Story
Reply #5 - Oct 19th, 2009 at 11:26pm
 
Hey Kevin you can ask for a lot more than our prayers here, we have some probable RELIEF for ya!

O2 is just one of the things you'll find out about here that can help you out tremendously.

We can't only rely on doctors (even most neurologists), we have to educate ourselves with the info available on this site, and then realize how much the doctors don't know.  Shocked

Here's to a new chapter for you where you very well may be suffering a lot less, and hopefully never have to visit the stoopid ER again.

And yes people sure do want to think it's just a measly migraine, don't they? They're dumb.  Tongue Grin
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« Last Edit: Oct 19th, 2009 at 11:27pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
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ClusterChuck
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Re: This Is My Story
Reply #6 - Oct 19th, 2009 at 11:50pm
 
Add my name to the list for OXYGEN!

It has saved what little sanity I have left!  Go to the tab, on the left side of your screen: oxygen info and it should answer most of your questions about oxygen, its proper use, and the equipment needed.

If you can't get your doctor to write a prescription for oxygen (you need that in order to get it from a medical supply house) then you might look into using welding oxygen.  It is completely pure, and many on this site use it, safely.

But, most of all, ASK any and all questions that you may have.  With all the meatheads clusterheads here, and our YEARS of experience, we should be able to get you the right answer, or at least direct you to where to get it!

Also, remember, just because your doctor has phd after his name does not mean that he knows all!  Sometimes it  stands  for Piled Higher and Deeper!  YOU are your best advocate!  The more YOU learn, the better your doctor (if he/she is a good one) will be able to help you.

Also, have your lover join here too!  There is a special place for special people like him, the supporters' section.  A good supporter is worth their weight in gold!  Let him know how much he helps you.

ALSO let him know, when you are NOT writhing on the floor, what he CAN do to help you.  Many of us just want to be left alone.  Others like to be held, or at least hand held.  Let him know what YOU want and need.  If ice or heat helps to take the edge off, let him know, and he can get it for you.  Keep him informed, and part of the process.

So, welcome to the nut house family, and ask away!

Chuck
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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
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lorac
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Re: This Is My Story
Reply #7 - Oct 20th, 2009 at 7:57am
 
Welcome Kevin  Smiley
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Potter
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Re: This Is My Story
Reply #8 - Oct 20th, 2009 at 12:35pm
 
Where are ya?
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Linda_Howell
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Re: This Is My Story
Reply #9 - Oct 20th, 2009 at 12:45pm
 
Hi Kevin,

02 should be the first thing you ask for when you see this new neuro.  Hopefully he can also get you started on a preventative also.  There is a lot of info. in the links to the left.  Educate yourself so you will be enpowered when you see him.

You've had CH for 10 years now...what have you been given in the past as a preventative or abortive?

I've been chronic since you were only a year old.

Linda 
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Mephistopheles
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Re: This Is My Story
Reply #10 - Oct 21st, 2009 at 11:29pm
 
I've only been dealing with this for three years about so I can't say I know how it feels - but in a sense I do.

The problem with getting CHs is that you never get used to them. Each one feels just as bad as the previous one. There's no built-up tolerance. There's no slowly gained immunity. There's no way to make it hurt even a fraction less. No relief, no prevention, no hope, it seems.

Luckily, I too have recently been diagnosed and I seek a cure - perhaps together we'll find solace.

In either case, welcome.
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