Hi All!   Im Ted L. from Texas. Ive had CH for 15 years. Skipped a few years altogether, but lately they seem to be totally random and more severe. Weight gain seems to make them worse(I also have sleep apnea, but just could not ever get used to that damn CPAP!) Oxygen seems to work the best for me, also hot showers. I cant believe I never found this site before now. I was literally in tears to find people who actually understand. Nobody I know has a clue, and as Im sure yall know, people can be really rude and condesending. Im stoked to find out about the convention, esp. since its gonna beonly about 45 minutes from home! Gonna try to be there. I do have a couple of questions. 1. The Red Bulls. Do they really work? 2. Smoking. Am I gonna have to give em up to help? Been smoking for years and never tryed to quit, even during episodes. (Its bad enough that I have to take a break from my martinis during episodes) Anyway, like yall say, Sorry I had to, But damn glad I found yall! God bless and never give up! Ted L.                                                                        

Hello, Ted.  Welcome aboard.

As for red bull, yes, they work for me.  It took me 3 tries to be able to drink it fast enough, now I can slam one straight down at the beginning of a hit and it helps.  I take verapamil and my neurologist knows I am using red bull and ok'd it.

I don't smoke, but the people on the board who do or who have quit generally have said it doesn't change anything.  I don't see why you should add the stress of quitting cigarettes to fighting ch.

Charlotte

Hey Ted
Are you using any preventatives?  Verapamil, lithium, and topamax seem to be the best.  Glad your using o2, its a life saver. The energy drinks do work, try to drink it down as soon as you feel it coming.  I use Rock Star....taste better to me.  Its the Taurine in the drink that helps us.  It must have 1000mg of taurine people say for it to work.  Glad you found us.  This place rocks.  Get to that convention.  Your lucky to live so close.  Maybe it will be in Philly one year and I'll be as fortunate.  I haven;t met anyone else with CH and you have a golden opportunity to do so

No, I havent ever tried any of the meds ive been reading about on here. My gp is real old school and really doesnt like to perscribe anything! However, Ive already made a list of meds fom this site, and Verapamil and Maxalt are on top of list. Next time I go to gp Im going to tell her about this site and those meds, and if shes not willing, Ill just go somewhere else. Thanks for the reply. Im still buzzin from finding yall. Its such a huge relief to find people who understand!

Ted, welcome!!!! i suffered for over 20 years before i found this site and people who  understand.  it has become my tether to sanity. i also use O2, and verapamil. just recently tryed melatonin at bedtime and its worked wonders for me!! good luck and GLAD you found us!!!!  Tuck

Damned glad you found us brudder, welcome home. Start educating yourself and you'll quickly find you know more then most doctors. Then it's up to you to be your own advocate and assist your doc with your treatment plan. And good call, if the doc aint open minded, change docs, it's your noggin! ;)

Welcome to your new second home.

Guiseppi

Hi Ted & welcome,

I think we all know what you mean when you say people don't understand. You have to have CH, or live with a loved one who has it,
to really understand what it means.

I use Melatonin and it works for me try the following link for good info:

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

Best of luck and PF days,

regards,

Melvyn :)

Ted,

on the smoking and drinking - I have smoked since the age of 8 and enjoy various types an quantities of alchohol - but never drink in cycle as it hits at kip9 before I can down a pint of beer. But just a warning from my Father.

He put a one new nail into a glass of water and another into a glass of rum.

He took me back a few days later and showed me that the nail in water had rusted up but the one in  :rum was still sparkling. 'Lay of the water son and stick to the rum' He said 'if it can do that to a nail think what it can do to your insides!'

regards ,

Melvyn :)

Hi Ted,  and welcome to the house that pain built.

  I can't tell you how many people here have typed  'cluster Headaches" into a search engine, found this site and cryed like a baby.  

 Go to the ouch wesite (link to the left of here) and join.  It's free and it has so much information your head will spin.  It's a good place to send your Dr. and a place where you can register for the convention in Dallas too.  We all want to meet you.  Dr. Peter Goadsby will be speaking there and he is the guru and pre-eminent researcher in our condition.  You just can't miss that.     Or meeting us either.  The information, the humor, the family attitude we all have for one another is addictive.  

I want to see your name on the "who's going" part of the convention page.  

Linda

P.S.  Yes, the energy drinks really do help.  Charlotte said she had a hard time chugging something with so much carbonation and I did also.  What I do is open a can and put it back in the refrigerator.  By the time I need one most of the bubbles have dissipated and I have no problem drinking it fast.

Just got in from work. I drive a big truck in DFW metroplex. (When I get a daytime hit I have to pull over). Thanks again for the welcomes,yall. Melvyn, love the nail story. This cycle started out with random hits at anytime day or nite, but for last week has just been the classic R.E.M. sleep pattern. Bought a red bull last nite and put it on my nitestand. As soon as the beast woke me up, I slammed it down. Well, about 15 minutes later I was PF. No repeat later. Of course I am kind of sceptical, but Im gonna do same again tonite. If it works again, Ill be jumpin up and down! I have a feeling yall gonna help me improve my quality of life, and Im still stoked about finding yall. God bless, Ted L.

Hi Ted, Welcome to the Site!  I can see you're as stoked as I was when I found it.

I saw you were going to try Maxalt.  I think I was the one who brought that up on this board.  I just wanted to tell you that it doesn't get absorbed in the mouth like I first thought.  I was justly corrected on that in here and verified the fact with some googling.  But I still have to say it works for me.  I always get hit about 90 minutes after falling asleep.  The hit wakes me at a Kip level of about 4 with it climbing rapidly.

I get up, throw a Maxalt-MLT in my mouth, suck on it vigorously until it dissolves (about 30 seconds), then I swish and swallow with water a few times.  I've watched my watch the last few times and I've found the HA gone (at least enough to return to bed) in 7-9 minutes.  In those minutes the Kip level goes as high as an 8-9 sometimes.  (I know I said 5 minutes before but I wasn't counting then and time goes by strangely while in a hit)

Maxalt (Rizatriptan) comes in pills and the MLT form that melts in your mouth.  If you're still leaning towards Maxalt, be sure to ask for the MLT form.

I've not seen anywhere that Maxalt it good for CHs but from my experience it works.  I ended up on Maxalt because I think my gp just thought I had migraines.

The verap works for me too.

Just thought you should know about the Maxalt.  I think most others in here would first recommend the Imitrex injections.

As far as quitting smoking?  I smoked for about 30 years now.  Last October I quit with the help of Chantix.  After 3 months off cigs, I missed it too much and lapsed back.  Looking back tho, I was PF for most of that time off cigs.  But who's to say it was the smoking.  It might have been coincidence.

I quit again on 6/8.  Too soon to tell if it's helping.  My normal 6PM hit seems to be waning but I still get the "alarm clock" hit at night.  If I notice anything that lasts, I'll post it.

I remember someone saying a cig after a hit is as good as a cig after sex.  I can't say I disagree! ::)  In fact, before I had any meds, it seemed a couple cigs helped with a hit.

I guess that's a very long way of saying "I don't know about the smoking." LOL

Anyway, PF wishes for ya.  Take Care,

Brett

Unbelieveable! My gp caved! At first she said no way would she put me on 15 lpm O2. Well, Praxxair driver just left here. Got 3 bottles, 3 masks, and 15 lpm. Who said Fri. 13 was unlucky?

Hi Ted,
Welcome. I think we all felt the same way when we found this site - but it gets better. There are a lot of truly wonderful, helpful and caring people here.

I'm confused by your last post because I thought you already had O2. If it's the regulator that's new, you can buy those online and you can get higher than 15 lpm.

What about a preventative? They dramatically reduce the intensity of the hits. And yes, energy drinks work. They help with shadows too. When in cycle I drink several a day (I seem to be immune from their "energy" powers)

~Kris

Didnt mean to confuse ya Kris. Have been on O2 for a while, but only at 10 LPM. After reading here that 15 was the proper dosage, I called gp and relayed that info, and doc initially balked at that suggestion. I will talk to her more about preventatives, but Ive got to find time to actually do an office visit for that, and work is crazy right now. I get a week off around July 4, so Ill get in to see her then. Know what you mean about the "energy" in the drinks. Im pretty much immune to caffine.

My prescription for O2 is 8-10 lpm. I normally don't go against Dr. 's order, but in this case I feel ok about it.  ;)  The regulator that Apria brought me goes up to 15 lpm. That doesn't always work for me. I bought one on e-bay that goes to 25. Haven't had a chance to try it yet, because I'm not in cycle, but it's ready for the next one.

I've been using Treximet for my CH- problem is my GP allowed me 2 100mg per day - although I've had a hell of a time with my insurance (since it's a migraine med, they can't understand why anyone would have more than one headache a day and won't cover the quantity I need) - but now my neuro only wants me to take a max of 6 treximet per week - I was just recently diagnosed with CH - would y'all say O2 is my next best option? - I'm also on topamax and and starting the verpamil regime.  God I never thought anything could hurt so bad - and I never thought there was a group of people out there who had hurt the same way

welcome home, from one newbie to another. this site is awesome! Ive only been on here for a week but everyone seems like family. Cant tell you about the meds, Im trying to learn about them too, but I will be educating my doc with info Ive picked up here. I can tell you about O2. Get it ASAFP! (nonrebreather mask, 15 LPM regulator).

Hi Melvyn,

I really want to believe this:


Quote:

But just a warning from my Father. He put a one new nail into a glass of water and another into a glass of rum. He took me back a few days later and showed me that the nail in water had rusted up but the one in  :rum was still sparkling. 'Lay of the water son and stick to the rum' He said 'if it can do that to a nail think what it can do to your insides!'

Carlsberg don't do Dads, but if they did maybe all Dads would be like that.  ;D

PF wishes to all,

Ian