should I be looking for something better?  The spray has knocked down HA's 3 nights in a row now. Much better than being up half the night suffering. However, if I had rode it out I would have expected at least one HA free night. Also, I feel like I got no sleep after the spray. Every day has been more shadowy than before I started using the spray (like worst hangover evah.) Even some low grade hits that I have managed with red bull. Also, the back of my throat feels like I drank some concoction made with battery acid.

I can completely manage this way, largely because I don't tend to get more than 1 hit a night (usually 1 night off out of 3 even at peak of cycle) . But I'm wondering if I would feel less grogged after O2 or run less risk of extending cycle. Also, I still have not seen a neuro. Should I continue with GP/nasal spray. Or push him for neuro/O2. I'd maybe have to lie about the effectiveness of the spray to get script and referral. Time is also a consideration ,immediately, as work pressures have been huge and my ability to handle them has decreased with onset of cycle.

My father -in-law has unlimited script for O2, and has offered me tank to try but I would need regulator and mask. Acquiring these out of pocket would not be prohibitive, but I am unsure about availibility w/o script. Might be easiest way to try O2.

Also, has anyone on this board tried the busters method? I did out of desperation last time I had a cycle. Had 1 more intense hit then cycle ended abruptly. Possibly coincidence. Not an option this cycle due to lack of availiblity, but I am promising myself (and my wife) I will be more proactive between cycles.

Regarding the O2, it works well for many of us.  Although I got my equipment via a script, some have had success getting a regulator via ebay.  It should go at least to 15 liters per minute.  You can buy an excellent mask right here from the hosts of this message board, DJ and Stephanie.

I cannot personally comment about the clusterbusters method, but others will most likely chime in soon.

Wishing you well,

Ray

Trying to work out a treatment plan when you have so many important questions points to the risks of self-care. A good headache doc, not just any neurologist, would be a useful move.

You don't mention using a preventive med even though having daily attacks. That would help with your suffering.

Possible that a longer acting triptan would help. May be that the Imitrex active working time is too brief for the duration of your attacks and so  the residual symptoms.
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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.  Call 1-800-643-5552; 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.

The following is by no means intended as a recommendation for action on your part but rather simply my own experiences and opinions based on those experiences.

I too questioned potential consequences of the repeated use of triptans in relieving CH pain.  Although effective I "felt" that subsequent attacks were both more frequent and intense.  Further, I also seemed to experience more persistant shadowing as compared to the days before a dx when I just rode-out the pain doing the dance.

Upon getting a dx I was started on a preventative (topomax) and given Maxalt (triptan) as an abortative.  The topomax seemed to wrap me in cotton candy (dummy up) and caused considerable weight loss (also not needed for me).  Neither did it prevent my next cycle in which I used the Maxalt to fight the beast.  Finally I found this place (just last year) and based on what I read here, petitioned my nero for an O2 script.  After getting the O2 delivered I bought my own 25 LPM regulator (script was for only 8 LPM) and mask.  

I weaned off the topomax and found I didn't need the Maxalt, O2 worked better.  I keep the Maxalt with me for when I'm away from the O2.  Using only O2 and energy drinks this present cycle has been WAY easier to deal with than the last.  I haven't taken Maxalt or any other perscription for CH in over 9 months.  For me, it's melatonin (5 mg) 1/2 hour before bed when in cycle and a ready M-tank of O2 year round.

Regarding busting, without a doubt it works for some, and taking the seeds (LSA) approach can resolve the availability issue.  However, that's a personal decision everyone must make for themselves.

I am of the opinion that you would in fact feel less "grogged" after using O2 as an abortive and run less risk of extending your cycle.

Wishing you the best and hoping you find the most effective means of increasing your PF time.

Mark

I'll add my cents (in world where pennies are worthless)

After more than 12 years of being chronic, I have learned that for ME:

- O2 at 25 lpm or higher for 4-8 minutes kills 90% of my attacks IF I jump on them fast. Once in a great while I have to go 15-20 minutes, never more. At a lower flow, O2 either doesn't work or it takes 15-30 if it does work. These things hurt, so those few minutes are precious to me...... OK, I'm a wimp, but that's how it is!

- Imitrex always works to kill an attack, but it actually causes more attacks to occur for ME, even with occasional use. Being chronic it was very hard to let go of Imitrex at first.

My rationalization was that "I was going to have hits anyway", but I found that O2 coupled with OTHER Triptans removed me from sort of a vicious cycle that I didn't realize I was in.  I went from 6-10 hits per day, down to an average of 3-5 just by getting away from Imitrex.

- Zomig NS (nasal spray) is the only Triptan that works fast, reliably and doesn't cause more attacks for ME. It's my emergency answer for times away from O2 like airline travel, or when I'm getting 5-6 hits per night. One spray gives me a sold 4-6 hours.

- There are other Triptans like Amerge, Relpax and Axert that I can take before bed and have a pain free night when I really, really need it. For ME, these do not make me pay for it later with more hits like Imitrex does.

Keep in mind that the next person to come along may have exactly the opposite experience! About the only constant is that oxygen at very high flow rates tends to work for most of us.

Marc

Edit to Add: I bought my O2 mask, regulator, etc online without a script.

Have you read the "oxygen info" link on the left of this screen? Or on the "medications, treatment, therapies" page at the top 'oxygen terms explained' and ' help in getting oxygen prescribed'.

After educating yourself about O2 for CH, you can then educate your Dr. Many Doctors are not aware of the modern use of O2 for CH.

You can get the best O2 mask right here on CH.com. The O2PTImask. I have one and it's great. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE also has a good regulator, but it's not cheap one.

Best of Luck, Don

Bob Johnson wrote on Mar 14^th, 2009 at 12:30pm:

You don't mention using a preventive med even though having daily attacks. That would help with your suffering.

This has a good ring to it.

My hits were never daily until I started using triptans.  When my cycles started they were only about 2 weeks with 2 or 3 major hits that lasted 2 hours. Now the cycles are 6 weeks with 4 or 5 major hits per week that last 3-4 hours. The increased frequency has been evolving with my attempts to thwart them beginning 4 cycles (8 years) ago.  Despite having dealt with CH most of my life I am fairly new to the medication game. And kind of wish I could just go back to the early days of naively suffering, but not for long durations.

As a CH sufferer I still feel very lucky compared to many on this board especially in that the frequency of my cycles has not increased. In 26 years of being a clusterhead I've probably had only 16 -18 cycles total.

What prevents should I consider? Doc suggested pred taper, but am concerned about steroids as I have been using topical for atopic dermatitis and orals for long term tendonitis. Doc was already saying I'm pushing my limits w/ steroids.

Are prevents as critical w/ cycles still 2 years aparrt?

retrovertigo wrote on Mar 14^th, 2009 at 7:06pm:

My hits were never daily until I started using triptans.  When my cycles started they were only about 2 weeks with 2 or 3 major hits that lasted 2 hours. Now the cycles are 6 weeks with 4 or 5 major hits per week that last 3-4 hours. The increased frequency has been evolving with my attempts to thwart them beginning 4 cycles (8 years) ago.  Despite having dealt with CH most of my life I am fairly new to the medication game. And kind of wish I could just go back to the early days of naively suffering, but not for long durations. As a CH sufferer I still feel very lucky compared to many on this board especially in that the frequency of my cycles has not increased. In 26 years of being a clusterhead I've probably had only 16 -18 cycles total. What prevents should I consider? Doc suggested pred taper, but am concerned about steroids as I have been using topical for atopic dermatitis and orals for long term tendonitis. Doc was already saying I'm pushing my limits w/ steroids. Are prevents as critical w/ cycles still 2 years aparrt?

Let me put it like this... I've had allergic reactions to all but 3 prevents I was  tried on. Anaphylactic reactions. Some that had me scratching my skin off.... and I'm still willing to try them.

Even if your cycles are 2 years apart, think about it like this : During your cycle, you want less, not more hits. Every hit takes away valuable time that you can spend living.

After your cycle ends, you can go off of the preventatives, as most sufferers do. It's not a lifelong medication... There are a lot of prevents to consider, I know there's a link Bob has given to people that list all of the prevents, so I'd PM him to ask for said link if I were you.

I'd also check with your local home health care places, and have your GP write the script out as it's stated on the oxygen info page. I was able to rent 2 portable tanks, with a 15lpm regulator, NRB mask included for $45 per month, $11 per refill. It was pretty instant, so you could always do that until you can purchase a 25LPM regulator.

Good luck, and PFDAN
Mystina

I'm giving my regimen for comparison purposes, I go the 2 pronged approach Bob speaks of.

1: My preventative med, the one I take daily while in cycle, is lithium. At 1200 mg a day it blocks 70-80% of my hits. Other popular prevents are verapamil and topomax. All require careful work with your doc to establish safe effective dosing.

2: My abortives, number one is oxygen. 30 years and it's still my fastest, most consistent abortive. I occasionally go for the imitrex jab but i avoid them as much as I can.

The steroids I only use for the 10 days it takes my lithium to get to a therapeudic level or if I desperately need some time off from attacks, big vacation or just exhausted.

Joe

We are all very different and the important thing is to find a method that helps keep yon beastie leashed and [mostly] under control for you.
What helps one person may not help another, a triptain that suits one may not another and some cannot take them at all.
Some preventatives work well for some and others need to try others for a variety of reasons.

I take topimax- have a happy mix of episodic CH & chronic migraine.
For CH I use O2 first coffee/red bull and back it if need be with either Imigran nasal spray or if the pains awful the auto-injector version.

interested to hear that some have had steroids, Ive been wondering if steroids have triggered my current cycle as I had to have IV steroids in hospital 2 weeks ago and cycle began a couple days later, I've been on steroid pills for 5 years, but only get the IV every now and again

My current cycle began a week after ending a course of steroids which I took for severe job related body aches. I'm a restoration carpenter and was working 14 hour days in an attic that I had to squeeze into. By the time the project ended I felt like I had been in a car accident.

Possibly coincidental as I was due for my cycle anyway. Who knows? The hardest problems to diagnose are intermittent ones.