After four years, the beast starting waking up in June, mostly shadows and nothing ever more than KIP1.  I told myself it wasn't happening trying to convice myself, knowing better.  It was nice thinking I may have finally seen the end of this crap.  I should have known better after 28 years.  It was the longest break I've ever had, hell I thought I was cronic once.  For about 7 years I was getting 8-10 a day without a break!  Thank god for 02 and Imitrex and finally finding the right doctor. (oh yea and insurance)

Then around the end of July I drank a bear with some friends.  That was the first time they, or my wife had seen a clusterheadache.  They know I had them. It was only a KIP3, but it scared the crap out of them.  Didn't do much good for my ego either.  Haven't had any full nights sleep since then.

Finally got my O2 even though they still don't have the prescription right.  They'll only give me one E tank at a time.  The supplier says the prescription they have for me won't let em give me more.  The doc will have to re-write.  Plus the only wanna give me an 8 liter reg.  I'll get em though, had an empty tank sitting around, so I'm going back.  Two 8 liter regs will give me 16, 10 used to work, not any more.  The bad thing about the night attacks is you already HAVE the headache.  8 liters ain't gonna break it.  Tried the Redbull while in a KIP10 and within minutes the pain started leaving. There went 1 1/2hrs of my night 3 hours after dosing off.  Second wakeup this morning, Redbull, O2 and only 45mins of KIP6.  Hopefully with 16lpm tonight it won't be too bad.  Won't matter now, got my Generic Imitrex - 6MG vial (syringe is loaded and ready for tonight).  That'll get me three and since I only had two last night I may get some rest.  Started the Melatonin last night so won't know for awhile yet how thats gonna work.

Not many daytime attacks.  One this morning on the way in, but O2 knocked it out at 8lpm. I was shocked.  Oh yea - REDBULL.  Chugged one of the 8oz cans.  Started the Verapamil -480mg, Prednisone taper is almost done, didn't seem to help that much anyway.  Started the Magnesium as well, figured what the hell, couldn't hurt.

Hard to believe that after all this time, still not much progress in the medical field on this, but we are a small number.  Nice to find new tricks like Redbull, I really think they helped.  It's been a rough time fighting with insurance company, doctors and O2 providers trying to get what I need to not suffer.  They really don't understand the pain we have to indure.

(Didn't mean to write a book)

Greta post, sucks he always seems to come back when you finally think he's done. My last remission was over 2 years, like you, I officially declared myself cured! ;D Yeah that really pisses the beast off. You've got your tools in order.....yeah don't you just love when a warehouse foreman tells you how to use your oxygen >:(

As to the magnesium. We have refined it a bit and are seeing better success with what Batch calls the arterial PH diet! It alters your arterial PH level to make you less succeptible to atacks.

Magnesium, Calcium Citrate, Vitamin D and Zinc. Washed down with fresh squeezed lemonade. Batch does it up to 4X a day, I was doing 2X a day occasionally 3X if i started hitting a high point in my cycle. Cheap, and really seemed to help my last cycle.

Welcome back....c'mon...deep down inside you missed us and couldn't wait to come back!....no??

Joe

Yea, that was the worst part about being pain free, being away from here, although I could have waited longer  ;D  Sucks to hear Kip died, did not know that.

Will give the Batch thing a shot as well.  Making a list of what to get at the store tomorrow in a minute.

Thanks Joe.. wish I could say it's good to be back... but it is nice to know we have a place to go ;)

I'd like to welcome you back also.  Sorry for the reason however.   

It's so weird to me..some Dr.s who are totally ignorant won't even precribe 02 at all and others like yours do it wrong.  For years I went with a 15lpm regulator and one day I got a 25.  The difference was amazing and I could abort so much faster. 

Go to the left of here and click on oxygen info.  Print out (No not the entire thing)  but the part where it has been proven that a higher reg. works.  Take that to your Dr.  and hopefully he will not be one that don't take kindly to a patient telling THEM what to do.  Ego should not play a part in a doctor treating you correctly.

Stick around at least for a while here.  Things have changed since you were here last and a few more things that help have emerged.  Energy drinks helping so much, higher flow regulators, RC seeds, Kudzu, Melatonin for night-time attacks and of course clusterbusters.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Linda

Welcome back.

Coach Bill

hahaha!
I love Red Bull now!
Tastes like battery acid but maybe that's why it works!  BURNS the sucker right out of your head!
:D


Welcome back, Art, and print out some of the info that Bob Johnson has posted about treatment for CH (the AAFP one (I think that was it) is particularly nice) and take/send it to your doc - them have her write the prescription as it will do the most good! 

Many of us have gotten our own high flow regulators, most Dr's won't Rx higher than 15lpm and most O2 suppliers don't have higher ones. Below are 2 places I've got higher flow regs from.

For 25lpm that fits E and smaller tanks for about $35 go to.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

For a better quality reg you can get in any size up to 60lpm got to..
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, $140 & up.

A good NON-rebreather mask with a bag is very important, I strongly recommend the O2PTI mask available from this site on the CH.com store $27.50+ shp, made just for CH

Don

Lettucehead wrote on Aug 19^th, 2010 at 11:07pm:

hahaha! I love Red Bull now! Tastes like battery acid but maybe that's why it works!  BURNS the sucker right out of your head! :D

It's like coca cola, it tastes so acidic you develop an appreciation for it's sulphuric acid qualities!!


Joe

Guiseppi wrote on Aug 20^th, 2010 at 12:09am:

Lettucehead wrote on Aug 19th, 2010 at 11:07pm: hahaha! I love Red Bull now! Tastes like battery acid but maybe that's why it works!  BURNS the sucker right out of your head! :D   It's like coca cola, it tastes so acidic you develop an appreciation for it's sulphuric acid qualities!!

I'm not quite sure what it tastes like as whenever I drink it I'm trying to get it into my system as fast as possible and my mind is getting slightly distracted by the CH itself.

I must try drinking a can sometime when I'm not having a CH, hoping that there is no pavlovian response and I get a CH as I've so strongly associated the two.

Welcome Back Art S!

Thanks for the warm welcome back, Linda, Coach Bill, Lettucehead and Ginger.

You know I think I may need to invest in REDBULL  ;D  the word is getting out quick.  I was doubtful at first.

I got a little further with my O2 supplier today, she let me take two "E" tanks.  LMAO.  Looking for a new one now.  They don't even carry anything bigger.  They're my biggest problem.  Not that they haven't been trying to be helpful.  She told me it's just the way the Doc wrote the script.  She even tried to call him while I was there, but he's a doctor.  Guess I'm gonna make an appointment with him next week and give him this stuff I printed out.  It's really not his fault.  He has learned a lot from me.  I have learned a lot in here.  It's just working out the kinks.

Don, I plan on buying one of those.  I may even get the demand valve.  Been working some overtime lately maybe that'll help pay for it.  I have insurance, but very high deductable.  Really useless insurance for a clusterhead, but it's all my company has to offer.  If I had known these headaches were coming I could have planned better, but we never know.  For now two E tanks a day at 8lpm (16lpm) each is helping, but the way the prescription is written, my insurance won't count it towards the deductable.  I'll explain of this to my GP next week.  I really don't forsee any problems with him.  It's my supplier, she didn't even know what a "M" tank was.  LOL.

Joe, got my Calcium Citrate, Vitamin D, Zinc, Magnesium and squeezed some lemonade.  Gonna give that a shot.  Today was hell, daytime attacks have started but with 16lpm, they don't last long  [smiley=bigguns.gif]  I'm so exhausted from not sleeping, hope the melatonin kicks in soon at 12mg a night.  May go to fifteen.

PFDAN to all soon,
Art