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rodgjf

Precursor to episode

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Fairly new to the site and this is my first post.

I've been an episodic sufferer for 15 years and seem to get my CH attacks in the spring or fall, sometimes every year or every other year. No real pattern.  I have noticed with the past few episodes that they seem to begin with very mild 2/10 type clusters for about a week or so before my full blown 10/10 attacks. 

I was wondering if anyone has these types of symptoms prior to an episode and if they have been successful with aborting the full blown clusters when these mild headaches begin.  

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Yes and yes are the answers to your questions.  I would say that most people actually get signs that a cluster period is coming even before the low-level attacks begin.

More importantly, please tell us how you are now treating your CH and we can give you some suggestions.

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I've just started taking melatonin to see if that helps per neurologist advice.  To be honest nothing has worked I the past.  Tried all sorts of things.  Series of steroids, triptins, nasal sprays, 100% Oxygen, opiates, verapamil.  I just grin and bear it for the most part as I know there is an end to the episode.

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How much melatonin? Standard dose producing results in studies is 9-10mg; there are people here who take as much as 30mg.

How was the oxygen delivered -- from a tank (not a concentrator), with a flow rate of at least 15 liters per minute, using a non-rebreather mask (not nasal cannula)?  If no to any of those, the oxygen was not being used correctly. And even if yes to all of them, many people get relief at higher flow rates with a better mask.

The triptans were injected? PIlls and sprays don't work for many people.

What was the verapamil dosage?  Some people have to go pretty high (even above 900mg/day) before they get relief.

Just me here, but after 6 years of reading literally thousands of posts here, my reaction to the idea that not one of those things helped is that either they weren't prescribed right (as I have suggested) or maybe you have a CH "lookalike" condition that will respond to Indomethacin but not those things you were given. The seasonal nature of your attacks certainly supports the idea that it is CH.

 

You might really want to start on the D3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/

And, assuming you do have CH (which I'm not questioning; just wondering whether there's another avenue to be looked at), you are in a great position to try busting, which you can read about in the numbered files in the ClusterBuster Files section of this board.

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I am taking 9 mg of melatonin.  After my episode last year my neurologist suggested I take the melatonin in this fall to help with prevention.

I was using an O2 tank with a non rebreather at a minimum of 15 liters. I seemed to get a little relief, nothing great and it also seemed inconsistent.  I would use it prior to and during a CH.

In terms of the D3 regimen, was it used for a deficiency?  I recently had bloodwork for a different reason and all levels were normal.  I'll definitely look into the regimen.

Thanks

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The low level of the "normal" range of vitamin D [25(OH)D] is 30 ng/mL in the US.  "Batch" (who has developed, improved, and closely tracked the D3 regimen) says this in the document I referred you to:  >>CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. min = 34.0 ng/mL, max = 149.0 ng/mL.<<  So you might be in the normal range but still have a "deficiency" regarding treating CH.

 

Because so many people with CH get relief from O2, and because it is very very rare for anyone who tries high flow rates (25 lpm or more) with a good mask (such as this one: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit)to not have success, and because O2 makes such a huge difference, I would urge you to give O2 another shot.  You'd have to buy the higher-flow regulator and the mask, but it might be worth it.

 

And please don't completely dismiss busting.

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I've been suffering with CH since I was 21, now 53. Doctors always said it was tension ha's. Moved to Texas in 1990's and met a Dr from Belgium who I was seeing for a cold. She asked if there was any other problems I was having. Told her I had just gotten over a series of ha's that lasted several weeks. She asked several questions and told me "you have what's called Cluster Ha's". Gave me a book to check symptoms and had all of them. Started me on Ergostat which was a dream come true--- company quit making them. Back to square 1. Moved back to Louisiana and had a neurologist start me on a variety of drugs which many are seen on this site----none worked and some very expensive. the only drug that worked was Imitrex injections till 7 yrs ago when I had a reaction---extreme shortness of breath and chest pains. Next was MM. the first time was CH free for the rest of the yr. The next yr they were back (always May-August) busted again and to my amazement went 2 yrs w/o a CH. Now I try to bust at least once a yr. Had been shadowing for a few months and thought I'd be ok, but tried 1 Cialis and wham bam Living in HELL again. No MM now due to weather conditions and in the last 3 days -2 nights no sleep and 1 night 3 hrs sleep. My co workers think I'm full of it. "It can't be that bad" I would like them to have only 1 and let me know how you feel in the morning. One thing  I have tried is chugging a Coke and applying a ziplock bag with a lot of ice and a little water to affected side of neck . Subsides to a much tolerable level. Hoping to find some relief (MM) soon to kill these for this period.

I've been on here since 2014, get on only after ha's begin. Now will be here on a regular basis to stay updated and an involved member.

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As CHFather said, yes and yes (sort of) here too. Really sorry to hear that the oxygen didn't work so well for you--I usually have quite good results. The pattern you describe is similar to mine. The yes-sort-of is that I haven't had success in aborting a cluster in the beginning, before the harsh 10/10 daily attacks start, but I have broken the 10/10 period of a cluster once with aggressive acupuncture and once with prednisone. However, I've also had times that they didn't break the cluster, but they helped. For me, acupuncture is a must during an active cycle--definitely helps the frequency/severity, and oxygen for attacks. I also take high doses of magnesium, which I think helps. By the way, for the slower 2/10 (or a bit stronger) attacks, I find that nasal spray with capsaicin is surprisingly effective--the brand I use is called Sinol. I really hope you find something (or a combo) that works.

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There are two weird precursors that I always get, beside the "shadows"/mild CHs. I haven't ever seen anyone else mention them and I've been curious if others have experienced this. The first is that I get irritable and mildly depressed (before the cycle starts and I have to deal with pain and bad sleep). The second is that I start to very slightly swallow my words. I've asked other people and they've never noticed but my wife says that she can tell.

 

As for dealing with them, I'll point people to my low-histamine diet post (sorry I don't know how to actually link to it). It's absolutely worked for me.

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