Hi all, I was diagnosed last week finally after 23 years of cluster headaches (Im 31) my oxygen arrived today, and it feels like Christmas!!! I had a little go, its strange to think this will (hopefully) ease the pain.  I didn't ask my neurologist how oxygen helps, I was a little overwhelmed when I was finally diagnosed and didn't ask loads of stuff I wanted to!!! Can anyone fill me in to why oxygen works on cluster headaches? I think my family are only just realising how bad these things are, (my husband knows, as he lives with it) but how do you explain this condition to friends and colleges?? Does this condition effect future employment? I have nowhere else to turn apart from here for understanding!! oh and has anyone ever sued a Dr for not picking this up sooner??? xxx >:(

It scares the thing into submission.

             Potter

The basis by which oxygen turns off a cluster headache is unknown at this time. Oxygen's constrictive effect on cerebral blood vessels may play a significant role.

Miakate...This condition of ours is so rare that there are not many teching hospitals or scientists who would find it advantageous to do any research on CH.  As it is right now...Dr.s get exactly 5 hours of training in headaches in Medical school and that is ALL kinds of headaches.  It isn't any wonder that most haven't a clue what this condition is, let alone how to treat it.

Linda

And just a real quick tutorial on how to use it as it MUST be used right or it won't work. A Non Re Breather mask......probably the most important part, no nasal canulas and no re breather masks, your lungs must get only 100% oxygen.........a high flow regulator...at least 15 LPM....and get on it at the first sign of an attack. 32 year episodic here and NOTHING has come close to the consistency, the ease, and the effectiveness of oxygen.

Scares it outta you....yer killing me smalls yer killing me! ;D ;D

Hoping it works as well for you as it has for me...kinda takes a lot of the scared to death feeling outta the equation.

Joe

miakate wrote on Jul 14^th, 2010 at 2:57pm:

but how do you explain this condition to friends and colleges?? Does this condition effect future employment? I have nowhere else to turn apart from here for understanding!!

It's difficult to explain, but the most important thing you can do for those who really care, is to direct them here. Most won't take the time, but some will. The most unfortunate misnomer in history has to be calling these things "headaches." They aren't; they are more like seizures, but even at that, the level of pain requires our own pain scale. As to employment, it is important to let your employer know what is going on, and how (as with seizures) you can work in between hits, and you can handle attacks with good abortives. Remember, their only experience with bad headaches is a migraine, which can debilitate for days or even weeks. These things come and then go...and there is grace in between. Glad you found the O2 works! Blessings. lance

Hi Miakate.  Welcome and don't worry too much, just get ready to manage your pain for the rest of your life.  Once you get your routine down and know the possible other options for when your meds stop working it will just become a chess game of trying to figure out what works. 

So, yes it will affect your work and everything else, but you can minimize this by reading a lot and taking matters into your own hands.  Whatever route you choose, you/YOU! will have to be in control of your treatments as most doctors won't be as proficient as you are about to become in YOUR care.  Many people print stuff out here and take it to their doctor for their cluster education.

So with that ma'am, keep reading here AND go check out the START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE website to see additional treatments that people have been having excellent results with. 

Probably no silver bullet exists yet for our condition so it is a matter of figuring out your attack times and preventing them or minimizing them and dealing with the occasional one that sneaks through. >:(

Good luck!

--Shaggy :)

  Thank you for all your understanding, I feel a little lost at the moment, its like I'm just waiting for an attack to happen, don't know when or where, I'm a little scared after my last attack they seem to be lasting longer, I have two small children, I work and I go to college so to call them an inconvenience is an understatement!!!  I haven't got time for them, but I know I have no choice, I accepted long ago this was part of my life, thanks again for your support xxxxxx :)

I haven't got time for them,

And that for me is the most frustrating aspect of the condition. All the time the beast steals from me. Hoping the 02 slays em.

Joe

Hi Miakate

I wanted to reply as I was in a similar position when mine first started ( in school with young children). I was a newly single mom and had just started taking Nursing and they came every day, twice a day for 8 weeks.

It's hard, but don't lose heart, it can be done.

My best advice would be:

A) educate yourself as much as possible. This is the best resource I have found

B) Get oxygen

D) Talk to your MD about abortive meds like triptans

E) Speak to your teachers and explain your limitations. Hopefully they will support you

Anytime you need an ear, feel free to PM me

Take care

High levels of O2 in the blood cuase the vessels to constrict. I thik it takes the pressure off the nerves that are inflammed and causing the pain. Just make sure you are doing it right. The details are on this website. As for how I would describe the headaches to others, I would tell them to imagine someone was trying to stab you in the eye with a screwdriver and just missed and put a screwdriver three inches into your skull. Now leave it ther for 30 minutes to an 1 1/2 hours. And you know they are comming back later with another screwdriver. For me 4 times a day for 15 months. The O2 really helped. Do it right and get the O2 as soon as they start.

Welcome Miakate,

"but how do you explain this condition to friends and colleges?? Does this condition effect future employment? I have nowhere else to turn apart from here for understanding!!"

Check out the collegue's letter at:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
It's very helpful in explaining not just to fellow workmates but also friends!
                              Regards Shell :)

Welcome aboard.  Glad you found us, cause you are now a member of the family, and there is no getting out of it. 

There is a tremendous amount of information available to you.  Please take the time and read as much as you can.  When you find something you want to try print out the info and take it with you to your Dr.  You will have to take charge of your treatment.  IF you wait for the Dr to do it you will hurt very badly for a very long time. 

The first thing I would do is to read the oxygen info section in yellow to the left of your screen until I fully understood it, then I would go to the CH.com store section, also in yellow, and order an O2ptimask.  It makes all the difference in the world!  In fact, I would do that first, and read the material while awaiting delivery.  DJ and Steph are VERY prompt about getting it shipped out though, so read fast. ;)  If you can I would try to get a higher flow valve than 15 lpm.  That is the lowest I would go, but higher is MUCH faster.

Jerry

Since no one has mentioned this, please encourage your husband to come here for support.  We support supporters, too!

I'm a supporter of over 28+ years, only 18 of those diagnosed. We all know the walk and the talk and we keep each other above water when the beast returns to our spouses.  There is a GREAT network of supporters here. 

I know your children are young, but they don't have to be scared of this.  My son has never known my husband without CH (he was finally diagnosed while I was pregnant).  Consequently, my (now 18 year old) son is an amazing supporter.  He knows the drill of getting dad to a "safe" place away from people and what to do and say and how to help him.  We never shielded him from CH, but we didn't make it all gory and ugly, either.  We just gave him the truth and let him process as he could.  He knew there was always a chance we had to leave a movie or a sporting event or whatever.  Never a problem.  Dad didn't ask for this, so we accommodated.  We actually pulled over in the middle of Washington DC freeway traffic to do our version of the chinese fire drill.  Dad jumps in back with the O2, boy jumps in front to keep an eye on dad, and mom grabs the wheel in a death grip and starts driving . . .LOL!  That's just life with CH!

And even though it may not seem like it, there really are positives to CH.  Some of the sufferers and supporters here have become my very dearest friends.  I would never have had the privilege to know them had it not been for this disease.

Live between the hits and don't let the beast win.  We're here for you and your family when you need us.

heres an informative thread on o2

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

make sure to have multiple O2 solutions - I have my big tank at home and I carry one or two portable ones with me at all times. Apria (which supplies my O2) gave me a great carrying case so no one knows what I am carrying, making things simpler.