Hi everyone I thank God and all of you for this website. And as much as i hate that anyone has this pain it makes me feel better to know that someone finally understands.
   I am 30yrs old and have had ch since 2007. My cycles start in the summer and last about 4 months. Start with one a day goes to 2 a day. Used to last bout 1 1/2 to 2 hrs. Now norm is about 3hrs. Docs put me on bp med can't remember which one and topamax for preventative imitrex pills for abort. Nothing worked. Was a horrable year. 2008 no cycle pf. 2009 their back bad get put on verampimil 240mg a day and depakot, imitrex injections. Didn't work. Bad year. 2010 upped veramp to 360mg and depakot to 1000mg, with frova for abort. Somewhat successfull, still got headaches 2x a day but usually no worse than a 7. And frova worked after about 45 min. 2011 frova does nothing. Nothing is working its worse than ever have shadows all day, ch 2x day 3hrs. Each is 9 or 10+. Hate everyday. Lost job with insurance wife is suporting us going to reg doc but he doesn't kno anything and won't listen. Won't change my meds did give me 02 but only wrote for 2 lpmand nose thing does nothing. I begged and begged him to up the 02 but as much as he would do is 15 lpm and even with the mask is doing nothing except emptying my bottle.And he gave me sprix nasal spray for pain. It cost $200 for 5 and u have to throw it away 24hrs after opening it.And is not for use longer than 5 days. Wich he didn't explain. When I found this out I asked him for something else. He won't change till I try it. So I got it today.Sprix is {ketorolac tromethamine} and in the same class of drug as aspirin and ibproferen. Which I think I read somewhere can make things much worse. That scares me cause I can't take any worse. But at same time am willing to do almost anything. Had to have my mother go get 2day because first attack made me useless. If 2nd one hits 2night I'm going to use it. But if anyone knows about this please let me kno                                                          

Welcome to the board. You need to locate a headache specialist neurologist. If there is any way you can get to one, it's well worth the effort.

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Read this link, print out the info for your doc. He is causing you a tremendous amount of unnecessary pain by not giving you high flow oxygen. Pay attention to the welding oxygen route, you may have to go that route. Or, pick up a 25 LPM regulator off the net, E-Bay always has lots...and rig it yourself. People who say oxygen didn't work are finding 6 minute aborts using the high flow route. You owe it to yourself to try it.

Go down to the medications section, read the post, "123 pain free days and I think I know why" It's a daily vitamin/mineral supplement, all OTC, providing a lot of relief for people.

Pick up a couple of energy drinks, Rock star, Red Bull, any containing the combo of caffiene and taurine. Many can abort or really reduce an attack by chugging one at the first hint of an attack.

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Then check out our sister site for alternatives to mainstream medicine.

Glad you found us, hope we can help you.

Joe

Hi Chuck123 & Welcome to Clusterville

  Sorry you're having such a bad time right now, but you've come to the right place.  Everyone here truly knows your pain.

  You need to be using the 02 with a non-rebreather mask (the one with the bag).  If you have one, it probably has a 1 litre bag, which is what we all used til the O2ptimask (3 litre bag . . . and designed for clusterheads) came out.  Links on this site ($27.50).  For best abort times, you need to hyperventilate with the 02.  I am slim and am able to do so with the 15 lpm regulator  . . . but you may need to acquire a 25 lpm reg (go to ebay . . . medical oxygen regulators).

  Not familiar with the Sprix, but others will be along soon with more info.

  You've found the motherlode of CH info/caring/sharing and the info/advice you will receive comes from folks who DO understand the pain this beast of ours can dish out . . .. you're not alone.  One of my favorite motto's on this board is, "Nothing works for everyone, but SOMETHING works for everyone", and here you have a good chance of finding the "something" that works for you.

  Read, read . . . ask any questions you may have.

    Be Safe,   PFDANs

       Richard
 

Strange the trex injections did not help. You really do need to see a headache specialist since your gp seems to be shooting in the dark. The verapamil is a good prevent but your dosage is kinda low...some may go as high as 960mg/day under a dr's guidance. Melatonin, prednisone tapers, zomig and migranal have been useful as well. Read this site and take extensive notes. You will have become your own best advocate and you will need to educate your gp. Gently. Blessings. lance

Without insurance many doors are closed to you.

Follow the leads, below, about calling the hospital, and tell them about our insurance issue--they may be able to direct you to low/no cost clinics.
======
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Thank you all for responding. I started on the fish oil and d3 today. Have a red bull on stand by, refilled my o2 this morning as well as upped my water intake. I know it is probably not advised to do without a dr. but I am uping my verampamil from 360mg to 450 spread out over 3 doses a day. And checking my bp at home. Hoping to get to a neuro soon. 
  Great news is o2 worked this morning. Started as soon as I got the shadows. Had a hard time hyperventilating at 15 lpm but took off the mask and breathed straight off the bag. 15 just doesn't fill bag fast enough. By covering the plastic flap was barely able to hypervent but I guess it was enough. Shadows went away killer never kicked in.
    Still going to order higher flow regulator and the 3 litter mask. Only one hit missed. Don't want to get too excited but  life seems brighter since I found this web site. Wish I had gotten internet sooner. Still have to use it outside and texas heat makes that tough but now I have help. Thank you all and my heart goes out to y'all. Now I know I am one of the lucky ones.

Those 3 hour long attacks are BRUTAL, I know, but great to hear that O2 is working, that you have the higher flow regulator plus optimask on the way, and you've got the D3, Red Bull etc. goin' on!  Sounds like you're really motivated to beat this beast back down ASAP, and my money says your prospects are good. 8-)

I'm also a bit surprised the imitrex injections didn't work - were you injecting right at the onset of an attack? If I don't catch an attack at onset imitrex (and everything else) may fail for me too.

Guiseppi mentioned the clusterbusters approach. It may seem a bit out there at first glance (it sure did to me!), but even many middle aged and older church going straight laced CH'ers have adopted it just because it can be more effective than any prescription preventative. Here's a Newsweek article devoted to clusterbusters if you haven't seen it yet: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You might also try replacing the little bag on your non-rebreather with a huge garbage bag. Tape up the open end, poke a hole in the corner, and affix it around the nozzle on your mask where the little bag was.

You can pre-fill the big bag and hyperventilate for the first few minutes the next time you need it. I've found that the first few minutes are the most critical.

Good tip Brew

And congratulations on your success with the 02   [smiley=thumbsup.gif] [smiley=thumbup.gif] . . another satisfied customer "hooked" on oxygen.  You see why we consider it our miracle abortive.  I have some artery blockage and high cholesterol so can't use Imitrex . . . 02 is my only abortive.

So very glad you found us.

  Be Safe,   PFDANs

     Richard

Thanks to all. Y'all have given me some great advice.
  today has been good. The trash bag was a great idea. Things never got worse than persistant shadows and a few twings. 1st pf day in about a month. and only a few days ago I could barely hold on to my sanity. I will wait a few days before posting anymore, but you can believe I will be on here reading every chance I can. Thank you, thank you, thank you!

P.s. I have a trash bag ready for tonight just in case. And I. Never tried the sprix as the o2 is working. Still looking for info on wether or not this can make things worse.

Forgot to answer bejeeber about the imitrex injections. They did work when I first got them but was using two or three a day, made me puke horribly and really expensive. So maybe did wait too long to use later on. But my cycles last about 4 months and in the end I didn't care about the money or pukin but they weren't working. That was couple years ago and have only tried once since then and only made me sick no releif. Frova was next and worked. But not this time.

Chuck, be careful with the verapamil. The danger is not so mcuh low bp as it is bradycardia or a heart block. Can come suddenly but may be detected with ekg's. Just be careful because heart problems often clear up when the meds cease. Blessings. lance

Hi:  This is my first post.  I was diagnosed with CH earlier this month though have suffered from migraines and every other type of headache imaginable since age 16.  My new neurologist used the term CH recently, which I had never heard of.  An MRI a decade ago (undergone for other reasons) revealed to my then neurologist I suffered from severe and chronic headaches though she didn't use the term CH then.  Finally, I can put a name to what I have.  This cycle I am in currently has been going on since June.  And, finally, I understand exactly what I am dealing with and have been dealing with most of my life.  I look forward to being a member of this group.  I might add I also have Meniere's Disease.

Welcome to the board Paw! Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

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Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe