9 years almost 10 with clusters and a lifetime of migraines handed down to me by my mother, thanks Ma.
The past few months, the pain does not go away at all and I am sick all day & night.
The super attacks are worse than ever and I am now broke not able to afford my injections anymore because they went from $154.00 to $400.00 for 5 bottles.
I am scared to death of not having a shot when I need it but, it is coming and coming quick.
Before I got signed on here, I did a little reading and see there are people that have it much worse than me, I can't imagine that because I am on the verge of giving up.
The tears don't stop flowing anymore, I feel like a scared little kid and I am 48 years old.
Now that I am in the site, I will go read around and see what I find.
Thanks for being here.

Buy some O2 it's way cheaper than imitrex shots and you won't get rebounds, if you use it right.

Welcome to the board...when you get a chance, give us a rundown of how you are dealing with your attacks, what you use for a prevent and abortive. Maybe we can make some suggestions to help with this cycle.

Joe

Guiseppi wrote on Sep 14^th, 2010 at 12:20pm:

Welcome to the board...when you get a chance, give us a rundown of how you are dealing with your attacks, what you use for a prevent and abortive. Maybe we can make some suggestions to help with this cycle. Joe

I use 100mg sumatriptan pills and 3-6mg shots of Sumatriptan.
I can't do oxegyn because I can't breathe through my nose and it does not work anyway.
Pills have gotten downright cheap but, the shots are out of line expensive forcing me to sell my brand new motorcycle to support my injections.
I need to know if online suppliers can be trusted to deliver?

If you were breathing oxygen thru your nose you were probably using nasal canulas which are worthless for CH. For oxygen to abort an attack, your lungs must get 100% pure oxygen, no outside air, no exhaled air, so nasal canulas, re breather masks, low flow rates, all are recipes for failure. The vast majority of people who try oxygen correctly, get relief in minutes. Please, even if it has not helped you in the past, read the oxygen info link on the left and give it a shot.

You haven't mentioned a prevent, a med you take daily while in cycle to reduce how many hits you get. I use lithium at 1200 mg a day it blocks 60-70% of my attacks. Verapamil is a common first line prevent and Topomax also has a loyal following.

Have you tried energy drinks, Rock Star, Red Bull, any containing the combo of caffeine and taurine, chugged at the first sign of an attack many can abort or really reduce an attack.

Lastly.........look at   clusterbusters.com    treatments outside of the medical mainstream that have proven effective for many of our members.

Hang in there.....all of us are on your side and will help you any way we can.

Joe

Fitzpatrick wrote on Sep 14^th, 2010 at 12:30pm:

I use 100mg sumatriptan pills and 3-6mg shots of Sumatriptan. I can't do oxegyn because I can't breathe through my nose and it does not work anyway.

Usually it is better to breathe through your mouth using O2 any way.  And what do you mean by " It does not work anyway."?  What flow rate did you try it at?  And where you using a non-rebreather mask. 

My nose has nothing to do with the way I breathe O2.
I use a mouthpiece.  Most people I find who says it doesn't work, probably gave up on it too quick due to low flow rates, incorrect breathing techniques and impatience. 

Fitz, try the O2 again.  Chances are, it does work for you.  We are here to help with any questions or advice on using it.  I STRONGLY encourage it because the sumatriptan is only going to cause "rebound" headaches which is something you don't want.

All the best!
Chad

I tried the O2 for 5 months and wasted my time and money, it does not work at any level. I just watched my bottles empty with no relief at all. I got worse headaches at the frustration of it not working.
Another thing is, I cannot afford it aymore.
I am in the process of selling my brand new motorcycle with less than 2500 miles on it so I can afford my meds.

Rebound headaches, that's what they are called huh?
I guess that is what I have all the time and my attacks are the real killers that make me want to die.
Right now the pain is managable and I can take care of some business but, an attack will be here around 12:30pm and I will be in tears ripping my scalp off.
I am going to see my doctor again tomorrow to have him right a new script for my injections so I can take it to the Mexican pharmacy in Panorama City where they charge poverty rates on meds, I just found out about this place yesterday. I hope it works.

What flow rates have you tried? Do you use a non-rebreather mask? Since you can't breathe through your nose, have you tried the mouthpiece adapter on a non-rebreather apparatus? Have you tried hyperventilating with demand valve?

There are many specific questions you have not answered - other than that you gave up on O2.

One more question: You don't really blame your mother for something that is purely a genetic twist of fate, do you?

Brew wrote on Sep 14^th, 2010 at 2:19pm:

What flow rates have you tried? Do you use a non-rebreather mask? Since you can't breathe through your nose, have you tried the mouthpiece adapter on a non-rebreather apparatus? Have you tried hyperventilating with demand valve? There are many specific questions you have not answered - other than that you gave up on O2. One more question: You don't really blame your mother for something that is purely a genetic twist of fate, do you?

I don't blame mom, I thank her for giving me migraines but, she was very generous with them and gave them to all four if us. I am the only one with clusters though, she had nothing to do with that except give birth to me.
I am a genetic defect.
Yes, I tried hyper ventilating with the silly little nose piece they gave me with the O2 bottles.
I never tried a mouth piece, I did not know about them.
I am a quick learner and will take what you people are saying with all of my heart.
I will ask my doctor to hook me up with some more O2 and ask the O2 supplier to hook me up with a mouth piece because I cannot breathe enough through my nose.
I have to close this out now and eat because my stomach is bleeding and then deal with the attack that is coming on.
Thank you for the welcome and I apologize for my inexperience with your site.

You have much to read and learn about using O2 to abort a clusterheadache attack. Start here:

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

The idea is to super-saturate your blood with O2. This takes a few minutes breathing nothing but pure O2 (using a nasal cannula mixes a lot of room air with the O2). Hyperventilating is a must, therefore you need to be at a flow rate at or above 25 liters per minute.

It's all there at that link. It appears as though it hasn't worked for you because you weren't doing it right. Not your fault - nobody taught you. Now you need to read and learn and git 'er dun.

Fitzpatrick wrote on Sep 14^th, 2010 at 2:57pm:

I am a quick learner and will take what you people are saying with all of my heart. I will ask my doctor ...

Guiseppi wrote on Sep 14^th, 2010 at 12:38pm:

You haven't mentioned a prevent, a med you take daily while in cycle to reduce how many hits you get.

Another something to ask.

Fitzpatrick wrote on Sep 14^th, 2010 at 2:57pm:

Yes, I tried hyper ventilating with the silly little nose piece they gave me with the O2 bottles.

I don't have a silly little nose piece, I have a mouthpiece with a bag called a "non-rebreather" mask.  I just use the mouthpiece rather than the mask.  You still haven't answered anybodies question regarding flow rate.  That's huge if you want results.  Take Brew's advice and read the O2 info to your left column.  I suspect you are using the wrong kind of mask set up and a low flow rate.  I never even tried O2 until I got instructions here.  A lot of doctors don't realize you need high flow rates and a non-rebreather mask for O2 to be effective.

Give it another shot, I swear it will probably work.

Chad

I am still reading, there is a shitload of information that is all new to me.
Thanks is all I can say.
I have a dr appointment for 9:15 tomorrow morning for a new O2 script.
Learning, still learning.
Head hurts from all the reading.

No question it can seem a little  over whelming! The good news is you won't find a more comprehensive collection of info on CH anywhere. Keep reading, knowledge is power with the beast.

Joe

Guiseppi wrote on Sep 14^th, 2010 at 12:20pm:

Maybe we can make some suggestions to help with this cycle.

Maybe, shmaybe, I think we can see now that you're definitely going to find out some new and effective ways here to beat back the beast.  :)

The amount of info here has got to be overwhelming at first, so I'm going to offer an opinion on 2 things to focus in on - they are the most likely to turn this around for you:

1) High flow / non re-breather O2 for an abortive

2) The "clusterbuster" approach for a preventative

We're seeing some impressive results with both of these. Here's an introductory video talk by one of our fellow CH'ers about the clusterbuster approach: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Apria delivered the O2 today with 2 different size bottles, one big bottle about 4' tall and 4 portable bottles but, they did not get me the non rebreather mask like it said to do on the damned prescription.
So I am waiting impatiently for them to bring it here now.
I have not taken any Imitrex pills today but, I did do two 3mg shots and my head is still killing me in waves.
I have to detox myself from the pills, it is not easy to do but, I kicked a gram and a half a day heroin habit and stopped drinking alcohol 10 years ago so I can get off of these pills too.

Cool that you got the O2 so quickly!

My local Apria didn't have any good non rebreather masks last tine I tried them - I hope yours does.

And I'm hoping you've found some quick way to get a high LPM regulator, or if not, that you realize you'll probably have to order one.

Quote:

I use 100mg sumatriptan pills and 3-6mg shots of Sumatriptan.

Please tell me you did NOT use all of these at once or all in one day????  Please tell us that.

The pills are generally useless for us with CH.  They take far too long to work.  They are made specifically for Migrainers, not us.  Also...hyperventillating with the silly little nose cannulas is a waste of time and effort.  You will need a regualtor that goes to at least 25 LPM.  They can be bought on E-bay.

I understand that reading the links as well as all the posts here can seem daunting...do it.  Start with the links to the left of here.  Ask questions here and we will all try to help you.  Remember no question is stupid.!!!!   ;)   That is what this site exists for.

Linda

edit to add:  You local supplier should be able to give you the proper non-rebreather mask but if not send me your address in a PM (up above) and I will send you one.

Linda_Howell wrote on Sep 15^th, 2010 at 10:31pm:

Quote: I use 100mg sumatriptan pills and 3-6mg shots of Sumatriptan. Please tell me you did NOT use all of these at once or all in one day????  Please tell us that.

Nope, can't tell you that.

I was doing 400mg of Sumatriptan a day plus a 3 or 6mg shot too because I did not know any better.
I do get migraines too, how bad is that?
Yes, migraines and clusters at the same time and I have not killed myself yet.

My supplier will be here with a non-rebreather mask tomorrow before 12 noon or I will be at their door asking why at 1pm. {The driver told me the business's location in Burbank today}

I have been using the O2 with the nose piece in my mouth all afternoon but, will I sleep tonight with no Sumatriptan pills in my stomach? Probably not.
It sucks being a drug addict, I hate this shit with all my heart and I have ten years off of narcotics and alcohol but, the past few years I have been on Sumatriptan and I hate myself for it.
I am making a change, no one else can do it for me.
I don't smoke either, I quit that 8 years ago.

The regulator set on 15lpm seems to be a bit short, I cannot hyperventilate but, I can breathe somewhat normally with it and it is working.

Ray,  The non-rebreather will be in tomorrows mail. 

In the meantime PLEASE stop taking that much Imitrex.  We don't want you to have a heart attack before we even get to know you.   :-[ 

Linda_Howell wrote on Sep 16^th, 2010 at 8:47pm:

Ray,  The non-rebreather will be in tomorrows mail.  In the meantime PLEASE stop taking that much Imitrex.  We don't want you to have a heart attack before we even get to know you.   :-[

Thank you Linda, much appreciated.
I stopped taking but, 50mg of Imitrex to goto sleep with but, I still wake up with a headache. I am afraid to go cold turkey on this stuff.
Today it moved to behind my left eye where as it is normally on the top of my head.
The O2 is helping but, it also disappears fast. My 4' bottle is empty and so is one of my portables.

Guiseppi wrote on Sep 14^th, 2010 at 12:38pm:

You haven't mentioned a prevent, a med you take daily while in cycle to reduce how many hits you get. I use lithium at 1200 mg a day it blocks 60-70% of my attacks. Verapamil is a common first line prevent and Topomax also has a loyal following. Joe

I have tried a lot of preventive meds finding out that I am allergic to Predinzone breaking out all over my whole body head to toe and Lithium gives me tremors so bad I can't hold a drink.
I never heard of Verapamil and will take that to my doctor the next time I am going. Topomax did not work.
I can't drink energy drinks anymore, caffiene does not agree with my system. I only drink water, nothing else crosses my lips.
Everything is poison or toxic in one way or another, so I will stay with water.

Fitzpatrick wrote on Sep 17^th, 2010 at 12:58pm:

Guiseppi wrote on Sep 14th, 2010 at 12:38pm: You haven't mentioned a prevent, a med you take daily while in cycle to reduce how many hits you get. I use lithium at 1200 mg a day it blocks 60-70% of my attacks. Verapamil is a common first line prevent and Topomax also has a loyal following. Joe I have tried a lot of preventive meds finding out that I am allergic to Predinzone breaking out all over my whole body head to toe and Lithium gives me tremors so bad I can't hold a drink. I never heard of Verapamil and will take that to my doctor the next time I am going. Topomax did not work. I can't drink energy drinks anymore, caffiene does not agree with my system. I only drink water, nothing else crosses my lips. Everything is poison or toxic in one way or another, so I will stay with water.

Fish do nasty stuff in water.

         Potter

Potter wrote on Sep 17^th, 2010 at 1:05pm:

Fish do nasty stuff in water.          Potter

That's why I don't eat any kind of seafood, it is disgusting.
My water is highly filtered or pure spring water, I even shower in filtered water because the water in Los Angeles is a toxic yellow out of the tap and smells like Clorox, shit or both.

Fitzpatrick wrote on Sep 17^th, 2010 at 5:14pm:

Potter wrote on Sep 17th, 2010 at 1:05pm: Fish do nasty stuff in water.          Potter That's why I don't eat any kind of seafood, it is disgusting. My water is highly filtered or pure spring water, I even shower in filtered water because the water in Los Angeles is a toxic yellow out of the tap and smells like Clorox, shit or both.

Fitz!...it was a joke...and funny...and previously said a little more pithily by W.C. Fields :o

FWIW...and my ADMITTED bias.... as I've made my living in the seafood industry for the past 30 yrs...

Seafood is darn near the perfect protein. Low in saturated fat...high in polyunsaturates...high in flavor....high in omega-3 fatty acids....high in minerals....lower in calories than red meat....

I could tell you a HORROR story about ANY food you could name...but don't do it anymore with my family...or this family....

As Julia Childs said:  "All things in moderation....including moderation"

BTW...wouldn't touch that water either.

Best,

Jon

jon019 wrote on Sep 17^th, 2010 at 10:14pm:

Fitzpatrick wrote on Sep 17th, 2010 at 5:14pm: Potter wrote on Sep 17th, 2010 at 1:05pm: Fish do nasty stuff in water.          Potter That's why I don't eat any kind of seafood, it is disgusting. My water is highly filtered or pure spring water, I even shower in filtered water because the water in Los Angeles is a toxic yellow out of the tap and smells like Clorox, shit or both. Fitz!...it was a joke...and funny...and previously said a little more pithily by W.C. Fields :o FWIW...and my ADMITTED bias.... as I've made my living in the seafood industry for the past 30 yrs... Seafood is darn near the perfect protein. Low in saturated fat...high in polyunsaturates...high in flavor....high in omega-3 fatty acids....high in minerals....lower in calories than red meat.... I could tell you a HORROR story about ANY food you could name...but don't do it anymore with my family...or this family.... As Julia Childs said:  "All things in moderation....including moderation" BTW...wouldn't touch that water either. Best, Jon

I know it was a joke and a very funny one but, I am not joking, I won't eat fish because the smell alone makes me throw up never mind the fact the all seafood comes out of the dirty nasty sea that has been polluted for centuries.

On another note, today is the 1st day since I can remember that I woke up without a headache.
I have not taken any pills in 2 days now and only done one 3mg shot, the oxygen has been working overtime though.
I now have a 5' tall 12: wide oxygen bottle and 4 portable bottles and Apria finally showed up with a use-less non-rebreather mask that does not fit my face and I can't get a seal with. So I am breathing the O2 straight from the hose into my mouth when needed.

5 days and no Sumatriptan pills but, I have done a few injections and just picked up a new box of 5 bottles.
My big O2 bottle is almost empty and will be by tomorrow morning.
All of you that have replied to my thread with info and advice, thank you very much.

If it's a non-rebreather, at least the O2 can accumulate in the bag so you can "gulp" it in.

As to it not fitting, you're not using the little green elastic strap, are you? Cut that sucker off of there and hold it against your face with your hand to make a tight seal.

We clusterheads use O2 more like a winded running back than a heart transplant patient.

O2 is saving my life right now.

Been there...still there.....glad YOU'RE there!

Since the discovery of 02 I've damn near forgotten what a KIP 10 feels like! So glad it's working as well for you! ;)

Joe

I am sure it has been asked before but, do seasonal changes have anything to do with the frequency of headaches?
This is the 3rd fall in a row where the severity and frequency of my headaches is amazingly high.
I have been pretty lucky for the past week and only had short boughts that get inline quick with O2 but, I have a headache now that is on the verge of pissing me off and O2 is not helping.

I remember a recent thread where there were some observations that yes, due to circadian rhythms and their effect on the hypothalamus, CH attacks often go into high cycle at the changing of the seasons.

I wonder if either upping your flow rate, hyperventialting the O2, optimizing your arterial PH a la the Batch protocol, or all of the above could get the O2 working better for you here in high cycle?

Glad the 02 has been working, have you seen the Batch Arterial PH diet yet? 02 stuttered for me last cycle and scared the heck outta me, 30 hours on the "diet" and 02 was back online again, it's pretty simple, it changes your ph levels making you less succeptible to attacks.

Magnesium, zinc, Calcium Citrate with Vitamin D, washed down with lemonade, up to 4X daily.

Cheap, simple, sure worth a shot.

Joe