Ok, I have been a CH sufferer for 18 years but I did not get an accurate diagnosis until 2 years ago. I have always been episodic and the cycles have always lasted about 3 weeks. About 15 years ago, quite by accident, it was discovered that steroids would end a cycle.

Well, all was good until this cycle. This cycle started over 3 months ago and has not let up AT ALL. I just went 5 days without getting hit (the longest so far) until Fri morning. Since then I have had 4. I have never, ever had this many hits in this short of a period.

I have been on verapamil since the last cycle 2 years ago when I finally got diagnosed. I stay on it because it does double duty controlling a heart arrhythmia. I have been ramping up the dose so that I have been on 600mg for the last several weeks. My blood pressure got quite low this past week so I had to skip several doses (maybe that is why I have had so many in the last 36 hours- don't know).

I saw the NP at my GP's office a couple of weeks ago but she wouldn't write for O2, she wasn't convinced it worked. I have an appointment with my neurologist on the 9/2. In the meantime Imitrex works GREAT as an abortive for me. But I honestly can't take these hits coming this frequently. I CAN'T.  I really don't know how you guys who are chronic do it. I don't, I truly admire you, that you can still have positive outlooks on life.

Anyway, after all of that ranting, what I really want to know is, are there any things that work to end a cycle?  I have tried melatonin, St John's Wort and Valerian root this cycle. I have been on 4 Medrol Dose paks and have had 2 separate steroid shots. NOTHING is breaking it!! Any ideas?? I'm willing to try anything at this point.

Hang in there!  Things will get better! 

Just keep trying new combination's till you find the right one for you!  You will find it!

Boski

Print out and give to the doc:

The National Headache Foundation:

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The Mayo Clinic:

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Dr. Todd Rozen:
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Dr. Lee Kudrow:

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On 02-15-05, the American Family Physician published the article "Management of Cluster Headache" by Dr. Ellen Beck, Dr William Sieber and Dr. Raul Trejo. In the Acute or Abortive Treatments section, it states that oxygen and sumatriptan are the "treatments of choice for acute cluster headache."

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{Thanks to Gator for these links.]
=================

Headache. 2005 Jan;45(1):98.   


CLUSTER.

[No authors listed]

Rozen TD. High oxygen-flow rates for cluster headache. Neurology. 2004;63:593 The two most effective cluster abortive agents are injectable sumatriptan and inhaled oxygen. Because most cluster headache sufferers are cigarette smokers and at high risk of coronary artery disease, many develop contraindications to triptans. Oxygen, the safest of all cluster therapies, is not effective for every patient. In Kudrow's landmark study, 75% of patients responded to 100% oxygen at 7 L/min, although only 57% of older chronic cluster headache patients had relief. A recent study documented a gender difference in response to oxygen because only 59% of female cluster patients responded to oxygen, whereas 87% of men did. In most textbooks and articles on cluster headache treatment, patients are instructed to use 100% oxygen via a nonrebreather face mask at 7 to 10 L/min. The rationale behind this prescribed oxygen-flow rate is unknown but has become doctrine since the Kudrow study. Prescribing higher flow rates of oxygen up to 12 L/min has recently been suggested, but there is no documentation that this may improve efficacy. Higher oxygen-flow rates (up to 15 L/min) are not known to benefit cluster headache patients refractory to standard oxygen therapy. Three cluster headache patients who demonstrated no response to standard oxygen therapy were exposed to higher flow rates of oxygen (14 to 15 L/min) to assess response. Comments: Once again, Dr. Todd Rozen's observations will change my clinical practice!-Stewart J. Tepper, MD I have questions: Were these empirical observations or do Drs. Kudrow and Rozen know how rate of flow affects oxygen delivery? Is oxygen uptake higher with higher flows? After all, 100% oxygen is 100% oxygen unless under hyperbaric pressure! Perhaps higher flow rates dry the nasopharyx to a greater extent. If patients perceive a higher flow rate, might this be an enhanced placebo effect? It seems like an interesting study to be conducted, and it would be useful to test if using nasal cannulae is just as good. Pulse oximetry and arterialized capillary blood gases could be used to monitor oxygen saturation and CO(2) retention/carboxyhaemoglobin levels in smokers.-David S. Millson, MD.

PMID: 15663630 [PubMed]

Thanks for the info. I plan on going back to see my GP tomorrow and discussing the O2 with him. He is more open to things then the NP is. I plan on discussing the Lithium with my neuro when I see her on the 2nd. But after this weekend I don't know if I will make it. I can feel the 6th one starting now. I just took 2 of my imitrex pills hoping to ward it off since I only have 1 shot left. I really am at my wits end. It has never been this bad. I started back on my verapamil last night despite my BP issues and increased my Topamax.

I looked at the clusterbuster site and I almost bought the seeds. Honestly, I am afraid to do that. I am an RN and I don't know if that stuff will affect a urine test if I were to get tested or if it is legal to have imported. I can't risk my license. Any info on that would be greatly appreciated since it does seem to work so well.

After 3 months of this and ESPECIALLY this weekend I am wore out fighting this. I am tired of living in fear of the next one happening.

Glad you mentioned being an R.N. -- means you can use this article more effectively.

PDF, below.

Bob Johnson wrote on Aug 22^nd, 2010 at 2:44pm:



Good article. Interesting stuff. Especially since I work shift work and that was mentioned. I am going to start back on the melatonin and stick with it this time.

The stimulator stuff was interesting as well but I am not quite ready to go that route. Although I do know a really good neurosurgeon who does them for parkinson's. I used to work with her when I worked in the OR.

Luckily the oral imitrex has aborted what was my 6th attack this weekend. Now I just wait for the next one.

Dharma, you mentioned you took Imitrex pills.  Injections are much more affective at aborting an attack.  And using the Imitrex tip over on the left, three attacks in one 6MG vial.  Works wonders for me.  I'll throw my two cents in on the O2 - get it!!  It usually works on most of mine.  The Imitrex never fails on the ones the O2 didn't abort in time.

As for ending a cycle, other than clusterbusters and occasionally prednisone, I don't know there are any.

Hang in there it'll get better...

Do you get the boxes on the left of your screen 3 yellow, the rest green??? The 7th from the top sez Imitrex Tip, click on that it'll show you how to get 3 out of one shot. Many can abort using just 2 mg of the trex. That's what you've seen others posting about when they talk about 3 for 1.

Joe

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Thank you Racer sir!

Joe

Thanks so much for all of the tips! Using the imitrex that way will be easy since I don't use the injector and haven't for weeks. Mine broke ages ago and the pharmacy never gave me another so I use the plunger from a tuburculin syringe that I got from work and just manually inject myself. I will just have to pay attention so I only use 1/3 of it.

@shaggy- I know the urine test my employers use will pick up on LSD so I don't know if the seeds would show. I'm wary. Also, I have to watch my caffeine intake due to my heart arrhythmia. Years ago, I was drinking Jager bombs with Red Bull and ended up having serious chest pain as a result. Although I am on so much verapamil now that may not be an issue any more. 

Thanks guys for all the kind words. It is actually nice having people who understand how rough this is. The only person in my life who understands what these are like is my dad (he was episodic for years and then his just stopped suddenly) and I don't want to upset me by telling him how bad they have gotten. No one else in my life can really understand. They try and they sympathize god knows but they really can't understand. And they really can't understand why the doctor can't just "fix" me. Especially my best friend who is also a nurse. When I broke down on the phone with her today she really wanted me to call the neuro on call or go to the ER. It was hard to make her understand that there was no point in that.

Really sorry to hear of your pain ... I'm battling a very similar situation.

I don't understand why Dr's are so reluctant to order the O2. I was blessed with an Internal Med doc who knew little about CH, but trusted me and my research and ordered me one the first time I mentioned it. Sadly, I've moved and he retired. However, when I was on it, it worked virtually everytime. I did notice that they O2 abortive didn't last as long as other treatments (headache returned within 3-5 hours) but it was fast, no needles, no drugs and I was out of pain.

Since having no other options of late, I'm left with the standard of waking up with the beast ... head to the bathroom, go get a Mt. Dew, Red Bull or coffee (I prefer the former because I can slam them immediately and the cold can feels good on my head!), get an ice pack (I use a "Bed Buddy" type pack ... they can stay in the freezer or go straight to the M/W for heating if needed and they are soft enough that if I lay back down with one under my head I can fall asleep on it and it's comfortable and doesn't get my pillow soaking wet!) and I walk ... a lot! I've recently set my Gazelle back up because I can really get the blood flowing and it's quiet so I don't wake everyone in the house!

Beyond that, I'm like most ... the Imitrex injections are my last resort. I know some say take them sooner than later, but I'm limited on my stock pile, have no insurance at present and just don't like putting poison in my body until absolutely necessary.

Hope this helps. This site is wonderful as are the people who have helped me with some of their great advice and experience.

Hang in there!

Red