My name is Laura.  I am a 32 year old female from Albuquerque, NM.  Seven years ago I was treated for my first "migraine".  My primary care physician put me on everything from atenolol, elavil, metoprolol, and topamax.  Regardless of what little pill I was popping on a daily basis, I found myself back in his office every six to nine months complaining that my "migraines" were back.  He would then prescribe zomig and prednisone and even narcotics to get me through the cycle which typically lasts anywhere from two to four weeks.  This past December, while suffering from my worst cycle-to date, my doctor finally referred me to a neurologist who said I was a textbook case for cluster headaches.  She revamped all of my medications.  I am now on verapamil 120mg x2 daily.  When my next cycle hits, I have been stocked up with indomethacin, prednisone, sumavel dosepro and zomig nasal spray.  She mentioned oxygen therapy but said she was hesitant to get me the set-up until we knew if it worked or not.  I explained that the majority of my headaches occurred at night and wasn't sure how to get myself to any source of oxygen fast enough (my headaches last 30-45minutes) in order to prove or disprove the oxygen theory.  She then gave me a handwritten note with my diagnosis and the oxygen recommendation and told me to keep it in my purse and when my next headache occurs to just walk into the nearest ER and hopefully I won't be forced to wait!

At this stage of the game, I guess my questions/concerns are in regards to the heavy medications I have been taking and the long term affect they may have on my system and also what other sufferers have done or where they have gone to determine that oxygen was, in fact, beneficial to their treatment and how they moved forward with getting the proper set-up at home.

Although the diagnosis isn't a pleasant one, I am so thankful to receive validation that I am not a medical freak show!!

-Laura  ::)

hey laura,
I am also a newbie to this site, and a sufferer for the last 10 years. the good thing is that your doctor diagnosed you correctly. I diagnosed this myself with trhe help of this site. Some gurus will be around to help you shortly. in the meantime let me just say the oxygen have been a blessing for aborting hits, the verapamil works as a preventative. these two medications wes able to get me through my latest cycle. To me it seems you are on a lot of medications, discuss side effects with your doctor.

Hi Laura and welcome to the board!

As Suresh says, O2 is THE main method of aborting the hit, if you catch it early enough!
I haven't the knowledge to ask this question but, will the ER O2 delivery setup be enough (ie min of 15lpm with 100% flow and NON re-breather mask!)
I am sure Batch or the others will be along soon to give you that info!

Once you get on the correct O2, you MAY be able to reduce the cocktail of meds you are currently taking!

Regards

Gary

Verapamil is a very common prevent medication for CH, common because it's effective for so many. Although most episodics go off the verapamil when they're off cycle. Then when the cycle starts back up, they do a 10-14 day taper on the prednisone, which holds the beast at bay, while they ramp back up on the verapamil. That way you're not on the verapamil year round.

On the oxygen.....let her know as much as I appreciate her "going outside of the box" with her ER note, IT WILL NOT WORK.  There are 2 critical components to making 02 effective, 100% oxygen to the lungs, at a rate to support hyperventilation, and just as important, getting on it at the first sign of a hit.

I'm 51, male, a 33 year episodic sufferer. I went from 90-120 minute attacks, to 6-8 minute aborts, just by huffing oxygen. A delay of 3-5 minutes in getting to the oxygen, will double that abort time. If I waited 15  minutes to get on the 02, the beast would be firmly established and oxygen will not abort. If I had to drive to the ER the beast would be so firmly established oxygen would be worthless, no matter how fast they rigged me up once I got there.

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Read this link, print out the supporting documents. We have hundreds of people on this board, hell by now it's probably in  the thousands, using 02 as their primary abort, keeping that expensive imitrex injector as a rare last resort. But I'm sad to say the system your doc has set up will convince you oxygen does NOT work because by the time you get to the ER, the headache is full blown and 02 won't help you much.

Welcome to the board, read EVERYTHING. Knowledge is your friend in the battle with the beast.

Joe

Hi Laura,

I too would encourage you to get o2.   It's truly life changing knowing that you can abort in 5 minutes. 

Welcome to CH.com.

Jeannie

Laura,
Joe is SO right about the time delay in getting to the O2 making a hugh difference in the amount of time it takes to abort 'the beast.'  For me, I noticed that 3 minutes lag time meant the O2 wouldn't work and I'd have to hit the Imitrex.

Please get with your Doc for a home set up or, if your Doc or insurance is unwilling, look into the links on this site that describe using welding O2 for home use.  The welding O2 is the same quality and source that is used for filling prescription medical use tanks. That bit came directly from the sales rep at Praxair, the O2 provider my wife uses (she's a glass bead maker).
Many of my attacks came at night and I slept on the couch next to my tank so as not to disturb my wife.
Glad you found us!
-Gary

Quote:

I am now on verapamil 120mg x2 daily

Quote:

I have been stocked up with indomethacin, prednisone, sumavel dosepro and zomig nasal spray.  She mentioned oxygen therapy but said she was hesitant to get me the set-up until we knew if it worked or not.

Your verapamil dose is still on the low side. If it's not effective at that level then you have considerable room to go up assuming your doc allows it given your reactions to your present level. Therapeutic levels for CHs seem to run as high as 960mgs/day. I'm currently finding a low threshhold of 400mgs/day as the beginning of effectiveness.

The other stuff is good stuff. Curious about stocking up on prednisone? A pred taper can help interrupt a cycle. Is it for use as an abortive? I haven't found such use very effective. Many have found Zomig to be helpful in aborting an attack. Others have found sumitriptan injections (like imitrex) more helpful. And there's a whole bunch of OTC stuff that helps.

But the best and most effective, when applied correctly, is O2 just as you've been told. It's the best. Good luck, and God bless. lance

Wow!  I am simply overwhelmed by the quick response by so many.  And with such AMAZING advise!  Thank you to each of you.

The neurologist seemed to imply that the verapamil will need to be taken daily for the rest of my life.  She did mention that she was starting me on a lower dosage and that there was room to increase that dosage as needed.  My concern, is that even at the lower dosage, I am not liking how I feel (light-headed and quite spacey all the time).  It seems like I should go back to her and inquire about only taking this medication when I am on a cycle??

Does it make sense to take ANY medication year-round for cluster headaches?  I guess I was under the hopes that a little pill would lessen or possibly prevent the cycle all-together.

The "stock" of Prednisone is 88 pills for a 14-day taper.  She gave them to me now so that I could start the taper at the very first sign of my next cycle rather than waiting to try to get into a doctor's office, etc. 

Similarly, the rest of the "cocktail of meds" I currently have on hand was given to me along with a flow chart of which ones I should try first and how I should proceed if/when those do not work, etc.  I guess I have to give the doctor credit for being proactive in that regard.

I guess my biggest frustration is that I tend to experience these cycles every 6-9 months and having just come off of one at the beginning of February, I feel like I am sitting in a limbo until the next attack.  What will work?  What won't?  The window of opportunity to experiment and find out is so small it is just so frustrating.  I think I am going to be proactive and fight for an oxygen set-up before that next cycle hits, though. 

Thanks again for all the wonderful advise... and more importantly, for letting me know I'm not alone.

Laura  ::)

Hi Laura

People who are episodic normally just take the preventive during their cycle, starting with a prednisione taper when the cycle starts to give some relief whilst the verapamil builds up to an effective dose over a few weeks. Once the cycle is over, often based on a couple of pain free weeks, the verapamil is reduced, hopefully to zero without any CHs returning, but if they do, the verapamil is just increased back to the effective dose. Do work with your doctor on this.

I've seen a few people who are episodic here report how they stay on the verapamil all year round when they have a lot of cycles with only short gaps between them, so there are exceptions.

For people who are chronic, they will be on the preventive long term.

Do get oxygen for aborting CHs. No preventive is 100% effective, so you will always get some CHs. With oxygen at a high flow rate via a non-rebreather mask you will be able to abort CHs pretty quickly and not have to ride out the CH.

And between hits and cycles don't spend the time worrying about the next hit. You need to enjoy life, whatever it throws at you, not sitting in limbo.

Great that the doc lets you keep the supply of pred on hand. I do the same and as soon as my cycle starts I start the 14 day taper whille I ramp back up on the lithium. But I agree, I do not know of any benefit of staying on verapamil off cycle. I can't wait to dump my med regimen when I'm off cycle. ;)

To your doc's credit, she has already shown to be more knowledgeable then the vast majority of stories we get here. Good on you for finding a gem like her. Continue to educate yourself so you can help her, help you.

joe

Hi Laura,

I'm in Abq, too, and found this site trying to support my husband - he's been fighting the CHs (this go-round) for the last 3 weeks. I sent you a PM to request more info about your doctor as I've been trying to find a headache specialist here for him.

Now I have a better appreciation for the importance of adding your location to your profile!

Wishing you more PF days and nights!