Hello,

I just recently found this site the other night when I was online waiting for a mild cluster headache to subside.

I am a 28 year old married white male from San Diego Ca. I am in great shape and exercise and eat right my only negative was that a smoked marlboro menthol ultra lights. I quit about a month ago for good and 36 hours later I was in Cluster Headache town.

I woke up with a massive pain behind my right eye. I have had 2 episodes before. I had a 1 week stint in late '04 and a 10 day episode in late '05. I was seriously out of shape then and was drinking heavily and was dealing with my sons cancer treatment's. He was diagnosed with stage 4 neuro blastoma in '01 when he was about to turn 4.
I was seriously stressed out and was depressed as you can imagine and I thought it contributed to my bad headaches. I did not seek medical attention at those times because I would look at my son and see what he would go through and I would tell myself I needed to suck it up and worry about him and deal with my pain like a man should.

Well that was then and this is now.

My son has passed away (Jan 03 2008) and I have been dealing with that for the past 10 months and this time around I figured I better see a doctor because I was in way more pain and have had the headaches for over 3 weeks now. I have had days of multiple headaches and only 2 nights without headaches. I am tired and fed up. I will see a neurologist soon but I feel my episode will leave me before that even happens.

I take sumatriptan and hydrocodone and now a low blood pressure pill (forget the name). The triptan is awesome to say the least.

The last two nights I have awoken with a mild pain so I am able to cut it off fast by taking my triptan pill. I do not eat a lot of food before bed so I can absorb the pill fast. I also go outside and walk at a fast pace. I have learned to clam the pain enough even when it is bad and I want to die so I can go out and get my blood flow going to work the oxygen and the pill into my body.

I also prefer this method so I do not wake my wife who is 4 months pregnant and my son who is 3. I hate scaring my wife with this and one night I had to fight with her because she was ready to take me to the ER and I said I could not handle being in a hospital because it would bring back to many bad memories of my son Eythan. I hate hospitals and I despise certain doctors. When my headaches are bad I am borderline suicidal and easily could turn homicidal on someone I dislike. So hospitals are a big no no for me when I am peaking with pain.

I feel very bad for those who live in a chronic state like this and I have the utmost sympathy and empathy for those who have taken their lives due to the pain and low quality of life it produces and for their loved ones who have suffered through it all as well.

I wanted to share my story and introduce myself just in case my story provides some sort of comfort or something positive and lets them know they are not alone. I am not a big forum guy and I usually like to keep to myself but I have a heavy heart for all of you and I wish you pain free nights and days and hopefully a full recovery of this god awful infliction.


Thank you for reading,

Matt

P.S. The attachment is a picture and is a tribute I made for my son following his death. Even in my most pain bouts it sometimes helps sooth and clears my mind of bad thoughts, though it doesn't take the pain away it does help my mind stay at peace. Maybe it might help one of you.

Cant post the pic sorry!!

Welcome Matt,


I am so sorry about your son.  Most of us have learned the hard way that going to the ER is pretty much a waste.  By the time you get there and are seen the HA has gone.  

Narcotics are NOT the way to go with this pain.  They can cause rebhounds, addiction and all it does is make you drowsy so you can't deal with what you have to during an attack.  In other words you're doped up and ther pain is still there anyway.  

Have you used Oxygen to abort an attack?  It works for about 70% of us and it's cheap, safe and has no side-effects unlike the other drugs we take.   You will need a prescription from your Dr. for it and a regulator that goes to at least 15 LPM with a non-rebreather mask.

Linda

Hi there, Matt.  I'm your local!

Truly sorry to hear about the loss of your precious boy.  No words can express my sympathy.  I'm certain that your grief and depression brought back the beast; my current cycle came back after many years of remission during the heavy grieving period I was going through.....although mine isn't near the tragedy you've had to endure.

I appreciate your concern for your pregnant wife, but I feel it's important that she understands CH doesn't kill us.  We may behave oddly during the attack, but knowledge is our power........she needs to understand there's no need to fear for your life.  It sucks big time for us, and loved ones feel helpless around us.  Maybe sit down and have a chat with her about how to handle your CH bouts as you both need each other's support?

Are you using oxygen?  Triptans do work like a magic.  Unfortunately many of us find them to cause a whole set of different problems, such as prolonging the attack, rebound CH, increased dose, etc.  When we need to use it, we really need to use it.  By no means I'm against the use of triptans; we all just need to be careful as it is a powerful drug.

If you're currently not using O2, in need of Rx but a long wait to see your neuro, etc., do let us know.  You have a few local fellow sufferers who can set you up in a hurry to get you by.

First of all it breaks my heart to hear of losing your son and then having to deal with thse as well.

We have 3-4 regulars on the board here from the San Diego area as Mrs T stated and they are great people who will help you if you ask. They have a wealth of knowledge and will all tell you to try 02 asap to see if it works. It would get rid of mine in 5-10 minutes.

High flow with a regulator that goes up to 15 lpm and a non rebreather mask. I hope you give it a try.

Welcome home.

Ouch..on several levels. If you get a pop up saying you have a new message it's not spam. If you don't get that pop up go to the top where it says "good afternoon you have 1 unread message". Click on it, please call.

Joe

Matt,

I'm so sorry for the loss of your little son.  My heart breaks for you.  I also am sorry for your pain.  You've come to the right place as far as that goes.  There is a ton of knowledge here.  Read all that you can and ask as many questions as you can think of.

At the onset of a HA many find it helpful to drink an energy drink as fast as you can.   The Taurine and caffeine in them are helpful for our condition.   Red Bull or Rock Star are two popular ones around here.   I just use a generic brand.... They all taste bad to me so why not save the money?
 
Even if your cycle does end before you see a Neuro, please still see him.  These things tend to always show back up.  If you have some weapons such as 02, you'll be much better off next time.

As said before.... Welcome home,

Jeannie

I am so sorry for the loss of your son.   [smiley=heart.gif]  My heart goes out to you and your family.

You've found the right place.  Many neuros are not properly educated - though I'm sure the San Diego members will help you get hooked up.

There is so much to learn, and you've found the right place.  We found this site to be very empowering, and I hope you find the same.

Please encourage your wife to sign up!  There's a forum for us supporters, and it IS really scary at first.  After that, it's just heart breaking.  But she can turn to us too.

Wishing you PFDAN,

Laurie

So sorry for your loss this year.  I can't even begin to imagine the heartache.

Glad you found the website.  I have found there is a lot to learn here and friends to be made.

With infinite sympathies,

Scott.

If you read the "getting to know you threads", you'll see I pop up like a bad ad and encourage your supporter to pop in here and let us help her, too.

There a plenty of young parents here that can relate to your circumstances with CH and small kids.

Plus there are plenty of spouses that support their sufferers and others around them.

We're kind of like your "one-stop-supporting" center . . . .  :-?

Glad you found us, but sorry for the cause.

Linda_Howell wrote on Dec 16^th, 2008 at 2:08pm:

Welcome Matt, I am so sorry about your son.  Most of us have learned the hard way that going to the ER is pretty much a waste.  By the time you get there and are seen the HA has gone.   Narcotics are NOT the way to go with this pain.  They can cause rebhounds, addiction and all it does is make you drowsy so you can't deal with what you have to during an attack.  In other words you're doped up and ther pain is still there anyway.   Have you used Oxygen to abort an attack?  It works for about 70% of us and it's cheap, safe and has no side-effects unlike the other drugs we take.   You will need a prescription from your Dr. for it and a regulator that goes to at least 15 LPM with a non-rebreather mask. Linda

I am going to see a neurologist soon and I think I will be doing oxygen after I meet with him. My doctor says I need to do a sleep apnea test first.

Jeannie wrote on Dec 16^th, 2008 at 3:13pm:

Matt, I'm so sorry for the loss of your little son.  My heart breaks for you.  I also am sorry for your pain.  You've come to the right place as far as that goes.  There is a ton of knowledge here.  Read all that you can and ask as many questions as you can think of. At the onset of a HA many find it helpful to drink an energy drink as fast as you can.   The Taurine and caffeine in them are helpful for our condition.   Red Bull or Rock Star are two popular ones around here.   I just use a generic brand.... They all taste bad to me so why not save the money?   Even if your cycle does end before you see a Neuro, please still see him.  These things tend to always show back up.  If you have some weapons such as 02, you'll be much better off next time. As said before.... Welcome home, Jeannie

Thanks for the tip I have been reading your guys' posts on here and I see the energy drink thing being mentioned a great deal by many different posters. I will try it for sure.

Thanks to everyone. I was trying to reply back to everyone but kind of tired right now. This place seems very kind and open, it is nice to see so many people caring for one another.

So today I was at work and I felt a small ache in my head so I went to my car and grabbed my triptan, as I walked back inside my buddy showed up and he asked if I wanted to smoke and I told him I had quit a while back but I would hang with him and talk since i hadn't seen him for a while (He is a contractor at my work place now)

So as we were talking I started telling him about my clusters when I just out of the blue asked him for a smoke. OS he gave me one and I smoked it. The funny thing is my head felt better and didn't bother the rest of the day. I really do think that when I stopped smoking that caused me to relapsed.

Obviously it is not a controlled scientific experience but I could not deny that I felt better. I did not need to take any meds the rest of the day either. I believe you guys refer to the small kind of aching shadows?? Not sure I actually call them echos due to the fact I have them after the real deal the next day or hours later after a severe attack and they just resonate around in my head.

Anyways I wanted to add that into thread my intro since I just made it today about an hour before that happened.

Thanks again everyone for all your kind words!

Matt,

Number 1 - Call Joe - he's a really good guy and will help you out more than you can imagine.

#2 - Get O2!!! And use it properly -- go to the medications page and read the info on HOW to use it and what you NEED to use it properly. High flow rate with a Non-REbreather mask is important!

#3 - Melatonin (OTC) at night will sometimes get you the sleep you need. It helps you thru the REM sleep (where the headaches appear). Sometimes it takes a while to get in your system (I finally figured that out on my THIRD try with it).

#4 - Energy drinks (Red Bull or Rock Star are the favorites around here - but be sure the drink contains caffeine and at LEAST 1000mg of TAURINE). Chug a can at the first sign of a hit.

#5 - Naracotics only make you dopey and don't do a thing for the CH. Even Excedrin taken too often (and yes Excedrin helps more than hydrocodin) will cause rebounds. We have to be really careful WHAT we take in the way of Pain meds even for other things. (My doc laughs at me cause I'm so paranoid about taking anything for pain).

#6 - don't know about your theory about smoking. I never quit so I'm not a good example. Some here have quit and still have headaches - some never started and have them and some of still smoke and got them anyhow. Who knows.... My theory is they're caused by the barometer, but that's not scientific either... :)

Anyhow welcome to Clusterville and your new family (and yes, we're family and you've been adopted so get used to being ordered around). We have a board on here for supporters so get your wife on here and she'll get the support she needs to put up with you. They're a great bunch to put up with us.

Now go call Joe!!!

Hugs BD

I had a can of monster on hand  and I didnt notice any faster results when I took my triptan. I ended up staying up very late tonight. I just wasnt tired at all. I just go done having a attack it was the worst one in the past 3 days or so. It was tolerable (whatever that means) but I guess smoking didnt help because I broke down and bought a pack and forced myself to smoke a few while walking around out side before I fell asleep.

I def going to get the Oxygen, I always seem to have issues taking full breathes while having attacks. Do you notice the same thing??

I will also pick up some melatonin as well today and take some before sleeping tonight.

All i can say it thank god of triptan but screw blueshield my health care provider. I had to refill already and they wont cover my triptan
until every 23 days! I mean seriously I wish I was at the board meeting of suits who came up with 23 days!! I mean seriously 20 fing 3!!! That makes no sense. You get 9 pills for crying out loud. So I get 1 pill for every 2.5 headaches. Luckily I found I can survive by half'n the pills. SO now I get 18 doses or 1 pill per 1.2 headaches. lol I hate decimals. Man ok I am going batty from the lack of sleep lately.

So I ponied up and paid the 171.99 out of pocket and that was with the riteaide discount card of 10% off and a another discount the tech nicely added on to help me out.

ok my head is fully back to normal looks like I will try to grab a couple hours of sleep before work. Thanks again!

So sorry to hear about your loss. I too keep to myself about most things. however I also recently found this site and I am glad I spoke out. You will find nothing but support, knowledge, and understanding on this site. I wish you the best and bid you many pain free days to come. Welcome!!

Just wanted to add my welcome, Matt, and my sympathies for your heartbreaking loss.  I'm glad you've decided to join us.

To attach a pic, simply click "browse" at the bottom of your reply screen, pick the item from your desktop or file that you wish to attach, and click it.  It will be added to the attachment line.  The file types allowed are jpg, jpeg, gif, and png.  The maximum file size allowed is 500 KB.  Then hit "post".  Should work.

All the best,

George

God bless your heavy heart and broken noggin