Hello everyone!  My name is Bryan, and I just found this site today.  I've been suffering from cluster headaches for about 16 years, although I wasn't fully aware of what my condition was until recently.  I'm 31 years old, married to the most wonderful, supportive wife in the world, and have an amazing 6 month old son as well. 

First, I can't tell you how excited I've been since finding this site today.  For so long, everyone sympothizes with me, but no one has been able to really understand.  It means a lot knowing there are so many of you out there who actually experience the same thing I do (and consiquently, I hate it for all of you at the same time).  I have an extremely supporting family, but having other people who can relate with real experiences mean the world.

I would greatly appreciate any help or advise from anyone here.  PLEASE help!!

My brief cluster background:  I began getting headaches early in high school and was originally diagnosed with migraine headaches after seeing several specialists.  I took muscle relaxers for meds to begin, but that didn't seem to solve my problem.  I switched to pain relievers after that, but that didn't do the trick either.  I tried oral immatrex years ago, but that did as much damage on my stomach as "the beast" did to me.  Over the past several years, I've taken Maxalt as my only medication.

Just the other day I found out about oxygen treatments on the internet.  I had never seen or heard of that before, but am curious to try anything new that might work.  I told my doctor, who knew nothing about it either, but did give me a prescription for a max of 7 liters/minute.  Reading this site now, I see how small that level is.  Unfortunately, the docs are gone for the holidays before I can get it changed.  I just had my tank delivered tonight.

My clusters usually last 4 - 8 weeks, and I usually get one per year.  I typically feel the shadows throughout every day, with a full blown headache at least once or twice a day during the cluster.  I would say I have level 0 - 2 fairly consistent all day long, with my "real" headaches going from a level 3 to level 9 fairly rapidly.  My normal episodes last an hour a piece on average, mostly between level 7 and level 8.  I take Maxalt only at the onset of a "real headache" as I've been terming it.

So a couple of questions:

1.  Do other people here see/like/recomend Maxalt?  Is there another drug, outside of Immitrex (I had a bad experience), that you would recommend instead?

2.  Oxygen seems to be the way to go.  I am learning about it based on other posts at this site.  Should I take Maxalt and use oxygen?

3.  The doctor also prescribed verapamil (3 times daily at 80 mg per).  I also suffer from anxiety, and have read this is a side effect.  Should I take this medication as well?

Sorry for such a LONG post, I'm just new to all of this and am looking for some answers.  My doctors obviously don't know enough about this to help me either.  Any advise or suggestions you could provide would be extremely appreciated.

Thank you all - I look forward to learning and growing with each of you.

Bryan

Hey Bryan!

It may not matter so much what your doctor writes for liters on the prescription - your O2 supply place likely doesn't have a regulator that goes up high enough anyway, so you may need to order one.

Thats if you want to roll the way so many of do - ignore the prescription and just use the LPM that works for you.

Constant hordes of CH sufferers come on here reporting that oral imitrex is ineffective. This should be common knowledge among doctors but NOoooo.........

Guissepi's got right. Injectible imitrex is the most effective (practically a guaranteed CH killer for many of us), nasal works for some people too.

Thank you all so much already.  I told my wife I wouldn't hear anything back for a few days with it being after midnight (Eastern time) and it being the holidays.  I never expected to hear back from some of you so soon!  Thank you VERY much!  I have read what a family environment this is, and that is proof in the pudding so to say.  I really, genuinally appreciate that!

I'm trying to digest everything and consider several factors. I feel like the consensus is to go with the oxygen treatment, I just need to get a higher release rate after the holidays.  Because of my anxiety, I am still worried about taking the verapamil, but the low dosage is somewhat encouraging based on the last poster.  The last thing I want is an anxiety attack along with a CH. 

I believe I did hear that my current supplier of the oxygen tank say tonight that they only had regulators that went to 15 liters/minute, so that's good advice.  It looks like I can buy fairly cheap even through this website for something a little more advanced. 

Seriously, thank you all so much already.  I can't tell you how much it means to me and how much I appreciate any and all feedback.  You guys are great and I just hope I can return the favor someday!!!  THANK YOU!  I'll take anything I can get at this point!  Keep them coming if you can.

I'm so happy I found this place, what a relief just to know there are others out there!  And to be able to communicate and share experiences or meds or best practices.  Thank you all again, I'm very much abliged!!!

Bryan

I have tried Maxalt but haven't had any success with it myself, but if it works for you then I suggest continuing to take it!
I have been on Verapamil for about 5 years and never had any anxiety issues from it, and I do have some anxiety. You are on a slightly lower dose than I am, so I think you should be fine, but if you take it and start experiencing more anxiety call your doctor and they can adjust your dose! Don't stop taking it without talking to them first though!
I think the best thing is at the first sign of an attack take the maxalt and then if that doesn't do the trick try the oxygen. It seems like Maxalt works for you, I may have interpreted wrong but I hope it does for you!
Good luck and Happy Holidays!

Bryan K. wrote on Dec 24^th, 2009 at 1:26am:
How high does your regulator go?  If it goes higher than 7 LPM, crank it up then.
You'll find tons of folks on here who are masters of O2 therapy.  It's the only way.

Bryan,

The first line of defence for CH are triptans and O2. Those are abortive therapies.

The best aspect of oxygen therapy is that you cannot overdose on it. I already posted it elsewhere but
I'll repeat it here: The fuss about the flow rate that physicians and oxygen supply companies make is because of the pulmonary patients as they use it for hours during the day. It does NOT apply to us clusterheads who use it for a very short period of time to abort the attack. It is NOT toxic and high flow rate does not cause any side effects. In other words, don't worry about the flow rate, just crank it up. This site has a lot of good info about the proper use of oxygen. The key is: inhale PURE O2 avoiding leaking of outside air and/or exhaled air and do it rapidly (high flow). You can try to straighten your prescription after the holidays but at best you will be given a regulator that goes up to 15 lpm. Getting a regulator over eBay might be faster and with less hustle. Also, order a mask advertised on this site.

The only triptan officially approved for CH is injectable Imitrex now also available as Sumatriptan Succinate generic (still expansive as hell). The good news about these guys is that they work and they work fast. Even if you are smack in the middle oh Kip 10 and getting ready to blow your brains out, one injection is sufficient to make the pain go away in 10 minutes. Many of CH sufferers here are using "Imitrex tip" and are able to abort the episode with half the dose. Most of us agree that the oral form (pills) is useless. Other triptans are: Maxalt (which is obviously somewhat effective for you but slow), Frova (long lasting but allegedly slow), Zomig nasal spray and fast dissolving pills (I swear by it, slower than Imitrex but long lasting) and couple of more but I have no experience with them. Beware, if you switch between triptans you MUST wait for the previous one to wear off before trying another one. DO NOT combine them.

I will not discuss the preventives (prednisone, verapamil etc.) as my experiences are not typical. The primary reason for this post is to encourage you with the oxygen. First tries can sometimes be unsuccessful and therefore disappointing. It takes awhile to establish what works best. But once you learn what works best for you that green tank will be heaven sent.