It's been a while since I was last here and posted. Probably almost 6 years.

I'm an episodice suffer and 5 1/2 weeks into my current full-blown cycle, though I started getting my shadows - or what I call "F-you" headaches about 2 weeks prior.

It usually takes me about a week or so to realize that it's a cluster cycle coming on - deny, deny, deny.

At any rate, I've been aborting with Relpax since mid-late September with a lot of success. Just a lot of pain (tenderness and "cluster-bruising") and exhaustion after.

I'm typically a daytime sufferer, but this cycle has been completely different. Late night, wake me out of a sleep, or first thing - as soon as I open my eyes, attacks. Only a handful have been my normal - 2 hrs after waking up - and they've been the worst.

Food seems to bring them on in the am unless I wait to eat until after an attack. And it aggravates the shadows in the evening.

I haven't had a drop to drink in 2 1/2 weeks. Got fed up a few weeks ago and mixed vicodin and Relpax with a margarita chaser only to remind myself how stupid that is.

I've pretty much given up on the vicodin to help with the shadows also. It's not helping so I haven't taken but two 1/2 tabs in the last week.

I've been to countless doctors in the course of the 15+ years that these have been as bad as they are including neurologists, pain management clinics etc. No more imitrex for me. Doesn't work any more and the Dr. doesn't want to prescribe the injections. I'm cool with that as long as the Relpax keeps working. I can abort an attack within 10-30 minutes. I just wonder if all that I am taking is just making this cycle last that much longer. 5 1/2 weeks is longer than typical. Most last 3-4 weeks, but I did go 8 weeks once... the year that they tried Prednisone, Depakote, Vicodin, you name it...

Anyway, I have yet to try O2, not for lack of wanting, but because I never have the opportunity to try to see if it will work for me. I am not getting hit during office hours and by the time I get to an ER, it'd either be almost over or so bad that I'd take something just to ease the pain. Any suggestions with that one?

Well, that's enough ranting for now. Sorry that I'm back here and that you're all here to read this. I know we're all going through this together which is somehow comforting, but I really wish that this site did not need to exist.

I'm just frustrated, angry and want my life back and I know you will all understand.

Thanks for reading...

~ Katie

:'(

I have noticed that triptans tend to prolong cycles for me and also lead to more hits during a cycle.  I would definately get some O2 if I were you. 

Still not sure if I can get an Rx from the Dr. if I don't know if it will work. Does anyone know anything about trying welder's O2? I should be able to pick that up, I would think. I just don't know what I need to do as far as obtaining a regulator and using...

E-bay usually has high flow regulators, and I think you can get a good mask form this site.  Just don't tell them you are going to inhale the O2, tell them you are a metal artist or something like that and need an 02 tank for your torch.  I have two tanks at home a large one and a small one, I bought both of them and take them in for an exchange when they are empty.  Airgas or Linde or some one like that should have a shop in your town.

Katie C. wrote on Oct 26^th, 2010 at 12:26pm:

It's been a while since I was last here and posted. Probably almost 6 years. I'm an episodice suffer and 5 1/2 weeks into my current full-blown cycle, though I started getting my shadows - or what I call "F-you" headaches about 2 weeks prior. It usually takes me about a week or so to realize that it's a cluster cycle coming on - deny, deny, deny. At any rate, I've been aborting with Relpax since mid-late September with a lot of success. Just a lot of pain (tenderness and "cluster-bruising") and exhaustion after. I'm typically a daytime sufferer, but this cycle has been completely different. Late night, wake me out of a sleep, or first thing - as soon as I open my eyes, attacks. Only a handful have been my normal - 2 hrs after waking up - and they've been the worst. Food seems to bring them on in the am unless I wait to eat until after an attack. And it aggravates the shadows in the evening. I haven't had a drop to drink in 2 1/2 weeks. Got fed up a few weeks ago and mixed vicodin and Relpax with a margarita chaser only to remind myself how stupid that is. I've pretty much given up on the vicodin to help with the shadows also. It's not helping so I haven't taken but two 1/2 tabs in the last week. I've been to countless doctors in the course of the 15+ years that these have been as bad as they are including neurologists, pain management clinics etc. No more imitrex for me. Doesn't work any more and the Dr. doesn't want to prescribe the injections. I'm cool with that as long as the Relpax keeps working. I can abort an attack within 10-30 minutes. I just wonder if all that I am taking is just making this cycle last that much longer. 5 1/2 weeks is longer than typical. Most last 3-4 weeks, but I did go 8 weeks once... the year that they tried Prednisone, Depakote, Vicodin, you name it... Anyway, I have yet to try O2, not for lack of wanting, but because I never have the opportunity to try to see if it will work for me. I am not getting hit during office hours and by the time I get to an ER, it'd either be almost over or so bad that I'd take something just to ease the pain. Any suggestions with that one? Well, that's enough ranting for now. Sorry that I'm back here and that you're all here to read this. I know we're all going through this together which is somehow comforting, but I really wish that this site did not need to exist. I'm just frustrated, angry and want my life back and I know you will all understand. Thanks for reading... ~ Katie :'(

     You joined in September of 09.

               potter

Thanks for the advice. There is an Airgas down the road. Can you get this at a Home Depot, too? Or just from one of the gas houses? And I'll start looking at regulators. I'd like to be able to get something relatively small since I will have to carry it with me for daytime attacks. Luckly, I only get hit once a day - the rest of the day is just filled with shadows that never go full-blown.

@ Potter - I didn't realize that I has posted last year. I joined the old site back in '04

Welcome back, take a second and read the oxygen info tab on the left. It details the different tanks and regulators available from the welding and the medical side.

For oxygen to work, you must get pure 02 to your lungs, no exhaled air, no outside air, and you must get on the oxygen as soon as you feel the tingle starting. That's why it's so important to have the set up at home, as by the time you get to the ER the headache is fully established and the oxygen won't help you.

Have you tried the energy drink route yet?? Rock Star, Red Bull, any containing the combo of caffeine and taurine, chugged at the first sign of a hit it will reduce or even abort an attack for many.

Good luck with getting the 02 set up. 32 years of the beast and NOTHING measures up to the speed and ease with which 02 will kill an attack, as quickly as 6-8 minutes for me!

Joe

I'm afraid of the caffeine. I really try to limit my caffeine regularly so that I don't get those HA's too. Too much, I get a HA, too little, I get a HA. I suppose it's worth a try though, what the heck.

Hey, also, while I'm thinking about it, does anyone have a recommendation for what to do to get rid of the persistent ache and pain after a CH has passed? My scalp hurts, my forehead hurts, my whole right side generally feels like I smacked my head, the pain goes down my neck and into my upper shoulder. Advil, excedrin, vicodin, nothing takes the edge off and I know I'm just feeding the beast by taking this stuff. Any advice is appreciated. I've never found anything that really works, just lived with it for years until it finally subsides and I'm back to normal for another year.  :-[

I'm so sick of this and I feel like I'm just complaining. You guys understand but I feel like that's all I ever talk about with friends and family. I know that they're concerned, but their first question to me lately is "how are you feeling?" Even when I try to lie, it's no use, they can see it in my face that it hurts.

The headache hangover. I never have figured out a way to get rid of those. Fortunately, since getting 02 and imitrex, the slammer followed by a hangover is a rare occurence indeed!

Joe

Good to know. I've spent the last hour reading about the O2. If an E tank only lasts like 44 minutes, do you keep additional tanks on hand? How do refills of O2 work? I'm really interested and am seriously considering the welding O2 but my husband has reservations since we've never used it before. I wouldn't even know what kind of regulator to get with one. Ugh.

I keep 8 E-Tanks in my garage. I'm lucky and thus far insurance is paying for it. When I get down to 3-4 full ones I call APRIA, the next day they show up and swap my empties for fulls. In the past, when I paid out of pocket, it was $4 a month per tank to rent and $12 to refill. I only kept 2 tanks in those days! Then I had to drive to PMS and swap the tanks myself...a bit of a pain!

Joe

Joe,

Thanks again for the info. We have pretty decent insurance so I'm hoping that it works to get some extra tanks. Do you keep a portable, too? They look pretty small and I don't see how they would last long enough to abort an attack.

You'd think that after this many years, I would have figured this out already. I guess I just wasn't ready and was young and too vain to walk around with O2. Now, I could care less. If they have to see me at work with oxygen, it's a lot less scary than having to see me with the beast.

~ Katie

Those soccer chairs that all the soccer mom's carry to games....are just the right size for an E-Tank.  ;)

Joe

If you can, you should get medical O2, it will make it easier for you. But be sure your Dr. writes the Rx correctly. Print out the link below from one of the top Neurologists in the US, and take it to your Doctor.
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If you end up wanting to use the welders O2 then do a search on this site to get the info you need. Use one of the search engines near the top of this page.

I abort 98% of my CH hits with high flow O2 25lpm+ and a O2pti mask available on this site at the CH.com store.

Good luck,  Don

Thanks!

You said that you have been getting these for 32 years. Are you episodic? If so, when do you get them? How long do they last?

For the first 25 or so years it was like clock work, 3 month cycles, spring and fall, 2 hits a day, morning and early evening.

Then I hit my mid 40's and they went all over the map, I've had remissions as long as 2 years, and cycles that went 8 months.

The only consistency has been lithium as my prevent, and oxygen as my abortive.

joe

Tried the Red Bull this morning as an attack hit while driving to work. Between the drink and placing some tough pressure on a pressure point in my left hand, it was gone in 10 minutes. No drugs, no pain killers and I'm not left with the typical exhaustion that even a 10 minute attack leaves me with, nor the medicated/drowsy feeling from Relpax.

Thanks again for the tip. We'll see how the rest of the day goes.

@Joe - sorry to hear about they way your HA's are. I can't imagine having them come on whenever they feel like it. Mine have only ever changed from spring to fall, but I've never gotten more than one cycle per year. I feel, as I read others stories and posts, that I am "lucky" as I don't deal with multiple attacks on a regular basis and they usually don't last more than 3-4 weeks.

Well, I think that the Red Bull just postponed the inevitible. Got hit a little after 9 a.m. but nothing that 40mg of Relpax couldn't beat in 10 minutes. I hate putting more of this stuff into my system. I'm going to try to see if the Dr. will just prescribe the O2. Don't know where else to turn.

Hi Katie. You're doing a good job asking the right questions. And the fine folks here are doing a great job providing their insights gained through experience. I can't add much, except to say these things are really to tough to beat down once and for all. Pred tapers, migranol sprays, nose sprays, exercise, heat or cold...these are all things that work for some sometimes, but not for everyone all times. And the worst time is what you just went through: a wahooo when the Red Bull worked, and then the beast came roaring back. We get it. We been there, bought the t-shirt and everything. Keep reading beyond this thread. There's more to try and hope maintains with things that could work tho not tried yet. Hang in there, Katie. God bless. lance

For the "afterglow" headache, I usually use excedrin.

Got a last-minute appt. with a neurologist at the Cleveland Clinic Headache Center - so now I don't have to wait till Dec. Got an Rx for verapamil, going to start on melatonin, got an occipital nerve block, and an Rx for O2!!! They came out this evening to deliver an "M" tank, 4 "E" tanks, and 2 non-rebreather masks. The Rx was written up right, and I have a 10-15lpm regulator.

Hopefully, we are on the right track. I still have yet to see if the O2 will work as I have never tried it so I'm keeping my fingers crossed.

Red Bull was not a good idea after all. Figured I'd try it again today and it only holds them off for 2 1/2 hours at most. Tried it twice and ended up fighting off 3 attacks. Finally gave in to Relpax when the 3 one hit just 5 hours after the 1st. Oh well, it was worth a try.

Wish me luck!

Have a good night to all and PF days ahead.

~K

Katie C. wrote on Oct 28^th, 2010 at 7:53pm:

Got a last-minute appt. with a neurologist at the Cleveland Clinic Headache Center - so now I don't have to wait till Dec. Got an Rx for verapamil, going to start on melatonin, got an occipital nerve block, and an Rx for O2!!! They came out this evening to deliver an "M" tank, 4 "E" tanks, and 2 non-rebreather masks. The Rx was written up right, and I have a 10-15lpm regulator. Hopefully, we are on the right track. I still have yet to see if the O2 will work as I have never tried it so I'm keeping my fingers crossed. Red Bull was not a good idea after all. Figured I'd try it again today and it only holds them off for 2 1/2 hours at most. Tried it twice and ended up fighting off 3 attacks. Finally gave in to Relpax when the 3 one hit just 5 hours after the 1st. Oh well, it was worth a try. Wish me luck! Have a good night to all and PF days ahead. ~K

WOW.  That's the full monty.

        Potter

No kidding. And he said that I can work with the neuro that I originally had the appt with in Dec since they all work as part of the same team, and that way I won't have to drive almost an hour to get to the one that I saw today.  :) ;D :)

Katie that is fantastic news!! Potter's right, damn, they gave you the full broadside salvo there!!! [smiley=sayyes.gif]

Joe

Good news, Katie. Many of us find its the Red Bull in combo with O2 that turns the trick. You might want to slam one down and hit the O2 at the same time-or nearly the same time, anyway. And...don't give up on the O2 when the pain stops or lessens. We've learned through experience it's much more effective to continue on the O2 for 5-10 minutes after the attack. This tends to help eliminate bounce backs. Hyperventilating can be tricky but it's what you want. So start on the highest flow rate first and moderate down as the attack lessens. If you have any problems doing this let us know. God bless! lance

Thanks for the O2 tip. I didn't use it today since I didn't want to do it at work the first time. I'll start it tonight or tomorrow, depending on my next attach, since I'll be at home.

I know that I read on another thread a couple of days ago that someone else had just gotten his and how to use it, but for the life of me, I can't find it.

I want to make sure that I'm doing it right since I've never used it before. Should I just take normal full breaths letting the bag empty and then fill back up as I exhale?

Your provider gives you the the instructions when they deliver the tanks.

               Potter

He showed me how to use the tanks, mask, regulator etc. But as he is not a CH sufferer, I just figured that someone here could better help me with a breathing technique. I have read the O2 info on the left, but just want to make sure that I have a full understanding in the event that I get an attack in the middle of the night. I don't want to have to be trying to figure out how to breathe when I'm half asleep.

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  Read every word it's all there.

        Potter

I have read it. Boy, I really hope people were more helpful to you when you needed it than you are being.  These things are hard enough to deal with alone and now I have to do this by myself too.

I'm sorry.  I'm tired. Tired of being on pain. Tired of having no control. Tired of being a prisoner to the beast in my head. I'm pretty smart. Pretty tough. Pretty good at figuring things out. And pretty good at taking care of myself.


I want my life back. I want the pain gone.

Katie C. wrote on Oct 29^th, 2010 at 9:49pm:

I have read it. Boy, I really hope people were more helpful to you when you needed it than you are being.  These things are hard enough to deal with alone and now I have to do this by myself too. I'm sorry.  I'm tired. Tired of being on pain. Tired of having no control. Tired of being a prisoner to the beast in my head. I'm pretty smart. Pretty tough. Pretty good at figuring things out. And pretty good at taking care of myself. I want my life back. I want the pain gone.

You've been a member for 400 plus days and all of a sudden we're not helpful.  You have to help yourself.

         potter

Katie....it's really just as simple as making sure the mask has a good seal and breathing as much pure O2 as you can. Hyperventilation is a good thing in this case.

Katie, for lack of a better way to put it, there are people on this board who deliver advice with kindness, and people whose advice always seems abrasive. I'd encourage you to take the good where you find it.

The keys to 02:

Get on it right away, a delay of even 2-4 minutes for me can substantially increase my abort time. Your lungs must get ONLY oxygen, no exhaled air, no outside air. That's why the tight seal on the face is critical, and make sure the flow is high enough that the bag does not completely deflate. If you are completely deflating the bag with each breath, concentrate on slowing your breathing a little.

Best of luck, we're pulling for ya!

Joe

Katie C. wrote on Oct 29^th, 2010 at 8:53pm:

I have read the O2 info on the left, but just want to make sure that I have a full understanding in the event that I get an attack in the middle of the night. I don't want to have to be trying to figure out how to breathe when I'm half asleep.

What works well for me is to start early, make sure I've a good seal and the regulator is set at 25lpm. Then I breath deep and fast for a few minutes. As soon as I notice that the pain is decreasing I drop the rate down to 15lmp, keep breathing at a rate that matches the air bag being filled. After a few more minutes I drop down to 10lpm and breath at a more normal rate.

Using this pattern I can normally kill a CH in 6-8 minutes, but I make sure I keep breathing the oxygen for about 5 minutes afterwards as otherwise I tend to get a rebound CH. If that happens I just go back to the higher rate for a few minutes.

I've not got an optimask with a 3 litre bag compared to my previous mask with a 1 litre bag, so I need to experiment to see how it works with the different bag size.

Thank you for your help. I tried it this morning. I think it could have gone better but at least it held the attack at bay.  Trying to breathe fast enough to deplete the bag is hard at 15lpm. It'll just take some practice. Thank you again.