Greetings All,

I have been asked by several people to start a new thread on the topic of the herbal/supplement mix that I and several others have found so very effective at treating cluster headache.  I am not using the dreaded 'C' word, but the mix has effectively eliminated CH from my life.  I get a shadow or two as a cycle tries to start, I start on the mix, no more HA's.  I stay on it for a week or so, and it's all over for another six months. YMMV.

The current discussion of the 'mix' started this past July, when I posted the following in response to a frustrated plea on a thread on this board:


Quote:

I posted a note about this a year or so ago, but thought I should share it with you.  I have had GREAT success with the following regimen:   Kudzu - 1000 mg, 2x per day (morning & night)   Magnesium - 250 mg, 2x per day (morning & night)   St. John's Wort - 300 mg, 2x per day (morning & night)   Skullcap - 425 mg at bedtime   Melatonin - 10 mg at bedtime   A little background:  I'm a 51 y/o male, 215 lbs, episodic CH since 1992.  I was in complete remission for about six years until about this time last year, when the Beast came back.  I decided to try 'alternative' treatment, since I've never had very good luck with doctors for much of anything.  I also would rather avoid the potentially severe and/or permanent side effects that most of the pharmaceutical treatments seem to offer!  I would have tried clusterbusters in a heartbeat, but I have a very real concern about potential legal issues here in Louisiana.  This is not the most progressive state in the U.S.! All of my 'ingredients' are pretty benign, available OTC, and cheap.  Total cost is well under a buck a day.  Most importantly, they work - at least for me.  I have stopped the Beast in its tracks!  Here's what happened: I came up with the regimen after reading a whole lot about what different people seemed to think worked well for them, as well as a good bit of the medical literature.  I went out and bought all of the supplements from either Wal-Mart, GNC, or the local health food store.  I started taking them, in the dosages described above, about a week into that cycle last fall.  From Day One, my attacks almost stopped.  I had a couple of K3's after a few days, and then it was over.  No more attacks at all.  I kept taking the supplements for a week or so, just out of caution (fear?), then stopped altogether.  About six months later, a cycle tried to start again - I had a single HA, around a K6 or so.  I restarted my regimen that day, continued it for a week or so, and never had another hit.  After 16 years of CH, I cried when I finally felt sure enough to tell my wife, "I beat them!  It works!  I've beat the f***ing headaches!!!" As desperate as we are to find something to help with CH, I think most sufferers have become a little jaded, and are unwilling to try something new, just out of fear that it will not work.  No guarantees that it'll work for everybody, of course, but just as a side note, no one has EVER told me that they tried this routine and had it fail.  It' simple, legal, safe, and cheap.  Try it.  YMMV, but it's damn sure worth a try!  The only caveat of which I'm aware is that I've heard that Kudzu may interfere with some of the pharmaceutical meds, so check with your doc if you're still on anything. I would REALLY appreciate any feedback, pro or con, from anyone who tries this.  Good luck and PFDAN to all! Regards, Jim

The original thread is here (if I did this right):

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After reading my post, Cyndi went out and bought the ingredients for her husband, Lorne, who was really having a hard time.  The mix knocked his cycle out in a few days, once he got all the components.  Cyndi proceeded to start another thread, which you can read here:

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After seeing Lorne's success story, Josh ("Hayduke") started on the mix in early September, and had almost immediate success.  You can read about it here:

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Since then, there have been several more success stories with the mix, including some pretty dramatic results.  A couple of others have had less encouraging results, but in each of the cases it seems that either the individual was sensitive to a component of the mix, or was taking a lot of other meds that might have interfered with it.  Again, I'm not claiming it will work for everybody, but it's got a very high success rate!

One of the main reasons I'm starting this new thread is that the old ones seemed to wander quite a bit.  We ended up with a lot of discussion that really did not involve the mix at all.  I, and several others, would like to try and construct a thread specifically about the recipe as described above.  I urge anyone who has tried the mix to contribute with their experiences.

I will make several more posts as time permits, and try to explain some of the 'theory of operation' of the mix.  I believe that there is a lot of synergy between the components of this recipe, and that a lot of the success has to do with the combined effectiveness of the ingredients.  Please do not think that because you have tried one or two of the ingredients in the past without success, it automatically means that this will not work for you! Try it before you knock it!

Thanks to everyone who has contributed to the discussions so far, and let's keep those success stories coming!

OK, enough for now!

Very best regards,
Jim

Great move, Jim, and I'll be following it with great interest.

Our friends who've chosen another alternative route started a thread along similar lines recently, we were able to keep it in line, the result being that it was openly discussed between adults and a helluva lot of good information came out of it.

Here's cheers to Synergy.

AussieBrian wrote on Jan 2^nd, 2009 at 9:09pm:

Great move, Jim, and I'll be following it with great interest. Our friends who've chosen another alternative route started a thread along similar lines recently, we were able to keep it in line, the result being that it was openly discussed between adults and a helluva lot of good information came out of it...

G'Day Brian, and thanks for the post!  What thread is it that you're referring to?

Regards,
Jim

Kilowatt3 wrote on Jan 3^rd, 2009 at 11:03am:

What thread is it that you're referring to?

A thread like this one. A new and novel treatment away from the standard regime.

Only good can come from honest discussion and the spreading of information.

Do you think it is safe to take this mix after taking RC seeds?
thanks!

I'm sure others will chime in here, but given that it's recommended to detox off of the Kudzu prior to dosing with LSD, LSA (seeds) or Psilocybin (shrooms) (the kudzu works directly on serotonin receptors), it's probably best to give the seeds a few days to do their work - if they're going to work.

Just an FYI, there are potential interactions between St. John's Wort, Kudzu and a lot of things, including lithium and the triptans.  

One of the problems with combining St. John's Wort and/or Kudzu with the triptans (including imitrex) is potentially Serotonin Syndrome, which can be fatal.

Laurie

catalyst777 wrote on Jan 7^th, 2009 at 4:40pm:

Do you think it is safe to take this mix after taking RC seeds? thanks!

Thanks for joining the discussion!

I don't have a lot of info regarding that combination, but Rocky started on the regimen soon after an unsuccessful attempt with RC seeds.  He had great results:

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If you decide to try it, please post to let us know how it works for you!

Regards,
Jim

Remember what works for one, may not for another.

For me, St. John's Wort is a bad trigger, as with some other antidepressants.

Melatonin worked great for me but I couldn't stand the side effects.

Right now I use 400mg Magnesium oxide twice a day and 240mg Verapamil twice a day.

Starting that many meds at once will make it impossible to tell which is the problem if one of them is a trigger. Another problem is when this treatment stops working you will have nothing to fall back on. Magnesium did nothing for me in the past but now I live on it. The beast is always changing.

Just my  [smiley=twocents.gif]

Paul

Opus wrote on Jan 7^th, 2009 at 5:35pm:

Remember what works for one, may not for another. For me, St. John's Wort is a bad trigger, as with some other antidepressants. Melatonin worked great for me but I couldn't stand the side effects. Right now I use 400mg Magnesium oxide twice a day and 240mg Verapamil twice a day. Starting that many meds at once will make it impossible to tell which is the problem if one of them is a trigger. Another problem is when this treatment stops working you will have nothing to fall back on. Magnesium did nothing for me in the past but now I live on it. The beast is always changing. Just my  [smiley=twocents.gif] Paul

I, myself started out one ingredient at a time. I cannot take St.John's Wort. It needs to be noted, that herb interferes with a LOT of medications! Be careful if you're taking anything for Epilepsy, as this herb causes severe problems with those drugs. There's also a chance it may lower the efficiency of birth control.

I started out with the Melatonin, added the Skullcap, and found the Skullcap helped a LOT. The Melatonin changed nothing for me, really. Magnesium changed nothing for me.

Just added the Kudzu, so, I have a while to wait to see how it does me. In a week I'll know if I'm allergic to it or not.

If you do have severe allergies like I do, and want to slowly introduce the different meds, I reccomend you start in this order.

Melatonin (Known to help CH night hits. If you're not on it, start it right now. We have low blood plasma levels of this in cycle!)
Skullcap (I saw results immidiately in my shadows diminishing.)
Kudzu (Also an herb used for CH.)
Magnesium (Blood levels of Magnesium are shown to be low in those with CH...)
St. John's Wort (Unless you have epilepsy or are on birth control, antidepressants etc. In that case, talk with your doc first.)

Good luck to all whom try it, I'll post my results once I have something more substantial.

Thanks to everyone who replied! My brother is actually the one who suffers with CH.  I'm trying to find him something that will help.  He tried Oxygen for the first time tonight, thanks to the kindness of a new friend. :)

Hello. My question is when you go with Kudzu 1000mg 2 per day are you looking for a daily total of 2000mg?? same with the Mag 250mg 2 per for a total of 500mg daily ????Let me know. Coach Bill

coach_bill wrote on Jan 8^th, 2009 at 9:49am:

Hello. My question is when you go with Kudzu 1000mg 2 per day are you looking for a daily total of 2000mg?? same with the Mag 250mg 2 per for a total of 500mg daily ????Let me know. Coach Bill

Hello Coach Bill,

Thanks for the post.

You've got it right - I use two 1000 mg capsules of Kudzu per day; one in the morning, one at bedtime for a total of 2000 mg per day.  Similarly, two 250 mg magnesium tablets per day; one in the morning and one at bedtime for a total of 500 mg per day.  Same idea with the St. John's wort.  I only take the melatonin and skullcap in the evening out of concern that they might cause drowsiness.  No guarantee that this is the absolute optimum dosing, but it works for me, 100%.  Same for quite a few other folks.

Hope you'll give it a try & post your results!

GL & Best regards,
Jim

Just a quick thought - for those with sensitive GI systems, this is a pretty tough regime.  But including calcium at half the mg of the magnesium will help a little.

Laurie

Garys_Girl wrote on Jan 8^th, 2009 at 11:06am:

Just a quick thought - for those with sensitive GI systems, this is a pretty tough regime.  But including calcium at half the mg of the magnesium will help a little. Laurie

Laurie,

This is not a "tough regime" at all.  The magnesium might cause some diarrhea in some people, but I will gladly trade my (historical) three-month cluster cycle twice a year for a week's worth of the runs any day, and I think most any other CH would, too!  ::)

I agree with you on the calcium, and it's been discussed on the other thread.  I now use a magnesium/calcium/zinc supplement instead of plain Mg, just in the interest of balancing out these nutrients.

Regards,
Jim

I'm the supporter, not the one suffering - but was simply relating Gary's experience with the Kudzu.  If he'd gotten more relief from it than he did, I'm sure he'd go with the intense gut pain and constant liquid diarrhea (he's chronic, not episodic).  Perhaps if he'd included the other ingredients of the "Synergy" mix he'd have seen more relief than he did in his cluster activity - but the kudzu was extremely difficult for him.

I was just responding to your idea to impart info in this thread, and the calcium hadn't been mentioned yet.

Laurie  :)

Garys_Girl wrote on Jan 8^th, 2009 at 11:38am:

I'm the supporter, not the one suffering - but was simply relating Gary's experience with the Kudzu.  If he'd gotten more relief from it than he did, I'm sure he'd go with the intense gut pain and constant liquid diarrhea (he's chronic, not episodic).  Perhaps if he'd included the other ingredients of the "Synergy" mix he'd have seen more relief than he did in his cluster activity - but the kudzu was extremely difficult for him. I was just responding to your idea to impart info in this thread, and the calcium hadn't been mentioned yet. Laurie  :)

Laurie,

Thank you for your response!

Is Gary sure that the symptoms he experienced were due to kudzu???  I'm a little puzzled by the "intense gut pain and constant liquid diarrhea".  One of the traditional (Chinese) uses for kudzu is in the treatment of diarrhea and dysentery.  Personally, I have a bit of chronic digestive trouble, and find the kudzu helps rather than hurts.  Of course, it's possible for someone to be sensitive (or allergic) to just about anything.

Is it possible that Gary was suffering from a bug or something, or taking something else that caused his problem, and mistakenly attributed it to kudzu?  It would be a shame if he's avoiding the kudzu if he really doesn't need to!

Anyway, thanks again for contributing, and please keep checking in with any updates on Gary's experiences.

Regards,
Jim

There was a lot of "talk" re: Kudzu in 2005 and 2006 - when I joined the board there was an active thread on it.  A lot of people tried it, and it worked or helped quite a number!  But it did make a lot of people gassy - and worse.  The thread I found discussing side effects isn't long, but it makes the point that Gary wasn't alone in his experience.  I'm sure it hit him worse because his GI system is shot (he's got "IBS" - meaning, they don't know what the problem is).  But he was on nothing else other than Protonix, and it was the first med he tried for CH - hadn't even seen a neuro yet. Diagnosed him through the board.  :)

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Laurie

hi, this is all alien to me, is the synergy mix a mixture of melontin , magnesium and other natural substances ?sorry

What is being used is in the quote portion of the first post.  It is several different over-the-counter herbals, the magnesium, and melatonin.  It based on the current understanding (so far) of the science and biology/chemistry of clusters and headaches.

Laurie

Hi again, All,

Here's a 'reprint' from a post back in August giving a little more background on the regimen:


Quote:

I don't claim a rigorous scientific process for deriving the ingredients, or the dosages, of this treatment, but here are a few of the factors that influenced it: For starters, the "high doses" of Kudzu are down right miniscule - many Chinese routinely consume kudzu root about like we eat potatoes.  A serving of a couple or three ounces (84,000 mg) would not be an unusual side dish to a meal.  I can' get too concerned about 1000 mg vs. 150 mg.  The real reason I chose 1000 mg for my formula is that when I first found kudzu in the store, it was 1000 mg capsules that I found.  I says to myself, "Self, that sounds about right..." The "additional stuff" was not tacked on, it was part of my holistic (using the term loosely) approach to fighting CH.  I did a pretty good bit of research on anecdotal evidence about sucesses that people had reported.  A couple of the ingredients, I already had some experience with - I have learned that my body, for whatever reason, has some difficulty assimilating calcium properly.  There's considerable evidence that a lack of magnesium will interfere with calcium absorption so, when I saw that some folks had reported that magnesium helped prevent or abort CH, I says to myself, "Self, put some magnesium in the formula..." You might recall a few years ago melatonin hit the news as a sort of miracle dietary supplement.  All kinds of claims were made for it, including that it would prevent cancer and heart disease, lower blood pressure, reverse aging, etc., etc., etc.  It was also touted as a very effective sleep aid.  I tried it back then and sure enough, it really is a very effective sleep aid!  When I saw that there seemed to be a connection between sleep disturbances and CH, I says to myself, "Self, you oughtta put some melatonin in the formula."  Several people had reported sucess with about 10 mg or so at bedtime, so even though that is many times more than I had ever tried before, I figured it was a good number to go with.  That was reinforced by the fact that I found 5 mg tablets in the store, making a 10 mg dose pretty simple!   Some interesting trivia about melatonin - Believe it or not, a tiny dose (say, 1/2 mg or so) will actually help you sleep better than a large dose, like the 10 mg in my formula.  I dunno why - I just know it's so. As for the other ingredients, the St. John's Wort and the Skullcap - These are both recognized as anti-anxiety or antidepressent herbs.  It became obvious to me while reading up on CH that stress plays a part in CH.  Some report that stress triggers a cycle.  Others report that the removal, or sudden reduction in stress triggers a cycle.  We all know that a CH, a shadow, an impending cycle, or fear of CH can sure contribute to stress.  These two ingredients (according to the prevailing 'wisdom') seem to "level out" the body/mind stress mechanism, and help people deal better with stress.  So, I says to myself, "Self, you oughtta put some of this stuff in there, too."  The dosages I arrived at were based more on what was commercially available in capsules or tablets than anything else. After I pulled all this info together, and bought all the stuff at the store(s), I took my first dose one night just before bed, a couple of weeks into a cycle, and continued the morning / night doses as Cyndi described.  I had about three more HA's over the next week, then was pf for six months.  The next time I had a CH, I went back on the regimen for a week, and had NO more headaches. One detail I probably should reiterate - I am a pretty big guy, at about 215 pounds.  Someone of average or smaller size might do just fine with smaller amounts of the ingredients.  Ask me why I don't try smaller dosages, or see if I can eliminate some of the ingredients from the treatment, and I'm just going to say, "WTF - I beat the !#@#% HA's, why should I change anything??? After 16 years, I'm pf and loving it!!!  Don't just take my word for it - ask Cyndi and Lorne Just as an aside, the "Super Snooze" has three of my ingredients in it - the melatonin, skullcap, and magnesium, although all of these are in considerably smaller doses that I'm using.  A "Super Snooze" along with a little St. John's Wort and some kudzu just might do the trick for some people - who knows? Anyway, there's a little insight into my thought processes, and how I came up with the formula - FWIW!!!

This post was in response to a poster who believed that the mix was "high doses of Kudzu with some other stuff tacked on".  I took issue with that description (and still do), as I believe that the effectiveness of this treatment lies in the synergistic effects of the different ingredients working together.  I think that anyone who tries to figure out "which ingredient" is the key is asking the wrong question.

I have edited the old post slightly for clarity and brevity.

I will elaborate a little more when I get a chance.  In the mean time, if you haven't tried this therapy, I strongly urge you to check it out.

Best regards,
Jim

I started this mix this week, and wanted to share the results so far.  Because of the other stuff I'm taking and what not, I wanted to give it some context.  Also, it's interesting to note that I'm the LAST person to try supplements like this for anything.  Just one of those "bah humbug, if the FDA hasn't tried it out, I'm not going to try it" types.  But, as we all know the Beast can make believers out of the most devout skeptics ;-)

So, my clusters usually come on for four weeks, on an average of two years apart.  This one started january 3.  I got on verapamil and a prednisone series straight away, as those have helped mitigate them in the past.  I also stocked up on the Imitrex nasal sprays and injections.

That worked fine for the first couple weeks.  This last week, into week three of the cluster, I started a HA Monday night and it would not leave.  It'd spike up to a K7/K8 overnight once I fell asleep, and maybe mellow down to a K3 in the day, but would not go away entirely.  Got some Imitrex injections which helped a little more (even though I have to overdose on them up to three shots' worth to feel an effect), but still had the constant shadowing in the background.  In desperation, I had my doctor Rx me cafergot, which used to work for me before I tried the Imitrex, and he also suggested me taking clonasepam - a muscle relaxant to help me sleep and reduce the heavy knotted muscles around my neck and shoulders which could be sparking new HAs - as well as a high dose of vicodin to see if that would take any edge off the pain (which I know can be a trigger and cause more issues, but has never had such an effect on me).

So, in a brief window of near-wellness while going to pick up the vicodin and the clonazepam (they were out of the cafergot, so I have yet to pick that up), I ran out and gathered up these pills (took three different stores to find the Kudzu and Scullcap -finally found them at New Seasons market).  I took a daytime dose that afternoon, and the nighttime dose that evening, along with the clonazepam.  That night was the first time I slept through the night in days.  I did wake up at 5 or so with a K4,  but one shot of the Imitrex nasal spray took it away enough within a half hour, enough to go back to sleep.  I woke around 9 or 930 feeling pretty doped up, but no HA.  After a little bit, around 11, I got hit with a K4, just peaking to a K5, but another nasal spray and just listening quietly to the radio for an hour, and it was gone.

That was Thursday, and that was the last HA I've had.  Not even a shadow since.  And sleeping sound through the night and for someone who gets hit in his sleep more often than not, that's huge..

Now, it's not the best scientific study or anything, especially as at the same time i started this mix, I also started the clonzepam and the vicodin, but I can't imagine either could really help my HA *that* much, expecially for the nighttime hits.

My Prednisone series ends in four more days.  My cluster is "due" to be over in seven days.  I'll keep this herb mix going along with the verapail for three more weeks to see what happens.  It certainly seems to me to have helped.  If this keeps up, and I've had the last >K3 of this cluster, then not only am I tattooing this recipe to my arm to never forget it, but I'm also researching how to nominate Kilowatt3 for a Nobel Prize, a Genius Grant, Kennedy Center Honor, and will organize a committee to name a local high school after him.  :D

I Will chime in very early to my experiment.  So far, its working.  I have slept throught the night 2 nights in a row.  I am at a day and a half with o hits but some shadows.  One shadow was fairly heavy.  Seems to be improving steadily.  I will update my conditiion

Kev, how far into this cluster are you and how bad has it been so far (up to when you started in on this mix)?

I was about 7-10 days into the cycle.  It hasn't been as bad.  The intensity of my attacks were down significantly.  Possibly due to quitting smoking.  But the frequency of my  attacks were speeding up faster than normal.  Usually my first week is fairly quiet.  But I had a few night of 2 plus attacks waking me up


It took about 3 days before I felt any effect from this.  I should be keeping a diary but its already too late for me to remember everything

Hi Jim,

This post is really interesting me. I have read about most of the remedies over a few years and it seems that there are mixed results.

I want to try the formula. I am a bit worried about conflict with allopathic medicines. I am currently on verapamil 360mg a day, Predisilione 40 mg per day finishing in 2 days, Sumatriptan nasal spray as needed - 20ml shot once a day over the last 3 days and of course O2. My pain levels are 2 to 3 all of the time and if I miss time the sumatriptan i.e. outside 6 or 7 then 8,9 and somtimes 10.

I am not sure how far I am into my cycle. I'm down from 8 hits a day to one. My cycle usually lasts 6 weeks once yearly This year (summer 08 to now) it's come twice.

Sorry if I have rambled on, I am trying be informative. The point though is the conflict and what to be careful about.

Thanks,

Ellick

Unfortunately, St. John's Wort and Kudzu should NOT be combined with any of the triptans (or antidepressants) because it can cause serotonin syndrome, which is potentially fatal.  I don't know about Kudzu and verapamil - if I remember correctly, Kudzu is also a calcium channel blocker, so should not be combined with verapamil, but I'm not going to swear to that one.

Laurie

I came off meds once before and that is before I used O2. I did it to avoid conflict of mixing another treatment. It's 5 days I am not going to forget and to be honest I am scared sh--less of doing that again, even though I spent many years undiagnosed and going through whole episodes without any effective treatment.
I think once you know you can try a range of stuff that can help you just don't want to go back to being without it. Sounds a bit junkie even though it's not.
Seems to me the best bet is to get through this cycle first and be supplied for the onset of the next one and try it first. At least I now use O2.
Thankyou for the advice. It seems to me that whatever we do there is always a trade off: - but whatever, I remain optimistic.

Ellick

i guess a set back.  got hhit at 6am this morning followed by a heavy shadow at 8am.  I knew I would jinx myself

Garys_Girl wrote on Jan 25^th, 2009 at 3:02pm:

Unfortunately, St. John's Wort and Kudzu should NOT be combined with any of the triptans (or antidepressants) because it can cause serotonin syndrome, which is potentially fatal.  I don't know about Kudzu and verapamil - if I remember correctly, Kudzu is also a calcium channel blocker, so should not be combined with verapamil, but I'm not going to swear to that one. Laurie

Here's a list of what all St.John's Wort is known to have problems with.
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I don't know if it's true anymore, but I was told not to take it if you had epilepsy and were on anti-convulsants. This was about 8-10 years ago though...

Am trying Kudzu treatment.  Trying it on its own first, and 3 days in have had several unusually strong non-HA shadows last 5-10 minutes but no true CH.  Will keep y'all updated on the progress.

One question for anyone who may have insight into the matter...

I read that the dosage in kilowatt's "synergy" mix is 1000 mg 2x per day.  The recommended dosage on my bottle is 3 pills per day, which each contain 100 mg certified potency extract and 450 mg raw root.  In your opinion is this combined dosage of 550 mg 3x per day (total of 1650 mg per day) comparable to kilowatt's 2000 mg per day?

Or perhaps a better question is, for those who have tried that mix, was your 2000mg certified potency extract, raw root weight, or a combination?

Thanks for any input!

brian wrote on Jan 26^th, 2009 at 2:53am:

One question for anyone who may have insight into the matter... I read that the dosage in kilowatt's "synergy" mix is 1000 mg 2x per day.  The recommended dosage on my bottle is 3 pills per day, which each contain 100 mg certified potency extract and 450 mg raw root.  In your opinion is this combined dosage of 550 mg 3x per day (total of 1650 mg per day) comparable to kilowatt's 2000 mg per day? Or perhaps a better question is, for those who have tried that mix, was your 2000mg certified potency extract, raw root weight, or a combination?...

Hi Brian,

The Kudzu I started with is "Good'N Natural" brand.
Contents are listed as :
"Kudzu Blend 1000 mg.
Kudzu Extract (Pueraria lobata) (root)
Kudzu (Pueraria lobata) (root)
(Standardized to contain 1% Daidzein)"

Not a super-detailed description.
The recommended dosage per the bottle is "Two tablets daily, preferably with a meal."

My best wild-assed guess would be that your dose of three pills is fairly comparable to my two.  :-?

Good luck with the mix, and please post to let us know how it goes.

Best regards,
Jim

kevmd wrote on Jan 25^th, 2009 at 4:48pm:

i guess a set back.  got hhit at 6am this morning followed by a heavy shadow at 8am.  I knew I would jinx myself

Kev,

Don't be discouraged!  A few folks have had instantaneous complete relief, but for most, it takes about a week to fully kick in.  Stay on it, and I betcha you'll be pf in another couple of days.

Best regards,
Jim

P.S.  Stay off the smokes, too!!!  ;)

keeping my fingers crossed.   Was hit again last night at 3am and 6am.  TOmorrow evening will be 1 week  since starting this regimen.  Overall this cycle is still early but not so bad.  I am getting almost 0 hits during the day.  Everything comes when I am sleeping.  At least it doesn't interfere with day to day activities.  Still looking for complete  relief

Ellick, I'm on Verapamil 120mg a day, finishing a cycle on Prednisone so at 10mg a day for another few days (started at 60mg a day like 15 days ago), use the 20mg Imitrex nasal sprays as well as the 6mg injections when i can afford them (my insurance is a little stingy).  Oh, and also taking clonezapam at night to help relax, and on a pretty steady dose of Vicodin for ancillary pain and to help relax as well.  And I've been on Kilowatt's regime since last Wednesday.

Yes, I know, I'm in the red med-wise.  Since on Kilowatt's course (which I started along with the clonezapam at night and vicodin throughout), I had one K4-5 Thursday morning which one nasal spray was able to abort within an hour, and last night, about two hours after falling asleep, had another 4.5 which again a nasal spray took care of withing a half hour.  For me, one nasal spray working is pretty much unheard of - I usually have to go into the unrecommended 3 dose range.

Anyway, Ellick, we're on much the same medication, and I'm still here to type about it.  I am aware of that serotonin syndrome, and am keeping an eye out for it.  We'll see.  Also, historically, my clusters last four weeks, and this Friday is the end of four weeks.  Fingers crossed.

aj wrote on Jan 26^th, 2009 at 10:16pm:

Ellick, I'm on Verapamil 120mg a day, finishing a cycle on Prednisone so at 10mg a day for another few days (started at 60mg a day like 15 days ago), use the 20mg Imitrex nasal sprays as well as the 6mg injections when i can afford them (my insurance is a little stingy).  Oh, and also taking clonezapam at night to help relax, and on a pretty steady dose of Vicodin for ancillary pain and to help relax as well.  And I've been on Kilowatt's regime since last Wednesday. Thanks for your post, I hope you are coming to the end of your cycle. I am on 400mg of verapamil. I am not tapering of Prednisilone because It is a 5 day course. You spell it differently so I am not sure if is exactly the same although it looks like it. Like you I have overused sumatriptan but I am not going to post it on here. Somone else might then think it is ok when it is not. Trouble is, what is ok for one person is not ok for someone else. Serotonin Syndrom can be on you in a matter of minutes. I think you are taking a risk which is what I would call 'sailing a fine line' and I genuinely hope that you are ok with it all. In my view you need someone else to check you regularly for signs of SS because if confusion sets in first you will not what is going  on and then you will not act. Mixing medication can take away what control you have. I hope you have a long remission and by the time it comes back there is a cure or safe effective treatment fop us all. Take care, Ellick. Yes, I know, I'm in the red med-wise.  Since on Kilowatt's course (which I started along with the clonezapam at night and vicodin throughout), I had one K4-5 Thursday morning which one nasal spray was able to abort within an hour, and last night, about two hours after falling asleep, had another 4.5 which again a nasal spray took care of withing a half hour.  For me, one nasal spray working is pretty much unheard of - I usually have to go into the unrecommended 3 dose range. Anyway, Ellick, we're on much the same medication, and I'm still here to type about it.  I am aware of that serotonin syndrome, and am keeping an eye out for it.  We'll see.  Also, historically, my clusters last four weeks, and this Friday is the end of four weeks.  Fingers crossed.

Jim or anyone else reading this post,
I'm currently trying the "synergy" mix and have had some success. The amount of attacks and severity of them have reduced, but I still get a KIP 7-9 every couple days or so. I have a question for anyone who can answer it: Is it safe to take tetracyclin with this mix? I've read all about tetracyclin and no where does it say not to mix it with any of the items in the "synergy". I think I'm safe, but if anyone knows anything different, please let me know.

ClosetCHer

There is some sound medical research to back some of the ingredients in this mix, and there is a ton of anecdotal information to back the ingredients in this mix as well, not just from this thread, but from the years that they have been discussed on the site.  A very intensive study was undertaken by Nani here on ch.com with regards to the kudzu and how it worked on CH.

I've had CH neuro specialists prescribe magnesium, melatonin and Vitamin B2, 12 and B6 individually - not as a B complex.

As with any treatment that is undertaken for any medical condition you have, please be sure to keep your doctor informed of all the things you are taking including, especially, supplements and over the counter remedies.

Always ask your doctor before adding, changing or removing medications for your condition as there may be reasons the doctor has used specific medications and avoided others;

Just wanted to be sure that everyone remembered to be smart in their choices;  we aren't doctors and can't prescribe and it is not the intent of this site to give out medical advice;  remember too, that the only thing that has been constant with CH over the many many years now is that nothing works for everyone.

It's awesome when threads like this move forward and information is gathered and shared through specific doses and experiences.  Just always make sure that everyone can do so safely.  That is precisely how we will learn more and be able to better make research decisions into the causative factors of CH and why things work or don't work.

It might be helpful too, if everyone was able to list the specific ingredients from their particular bottles - not all bottles of supplements are made equal;  many of the kudzu supplements were found to be dramatically varied in their potency when Nani was conducting the kudzu studies here a few years back.  It will be helpful to others, as well as to the medical and research community, to know the specific details of the brand, dose and listed percentage/potency of each of the supplements and minerals.

Thanks!

Cat

Hello everybody

I can't agree with the original post and with the idea for some reasons. I think that you can't talk about Synergy until you have tryed each component individually. And the reason is that more of components go to increasing serotonine levels and this way you'll never know what of them did the work.

Kudzu - 1000 mg, 2x per day (morning & night)  
Magnesium - 250 mg, 2x per day (morning & night)  
St. John's Wort - 300 mg, 2x per day (morning & night)  
Skullcap - 425 mg at bedtime  
Melatonin - 10 mg at bedtime  

Kudzu. What does it exactly??. No idea
Magnesium. A co-factor needed to Tryptophan-Serotonin way.
St. John's Wort. Hypericine. A selective seretonine re-uptake inhibitor (plus cortisol reduction, the say).
Skullcap. No idea.
Melatonin. More melatonin taked, less serotonin wasted by the body creating melatonin.

The serotonin production depends on so many, many factors. You can, of course, do this way, and take all together or taste each component at a time. After this, you can take for couples and so on, because there is always one thing that limits the result.

You can really give for sure that if you eat together all the serotonin direct and no direct fabrication factors, that's would be good. And that includes at least: Tryptophan suplements, vitamin B2, B3. B6, C, magnesium, 5-HTP, Melatonin, fluoxetin (really stronger in its work than hypericin) and melatonin.

I am from those who think that suffering some crisis (attacks?) is a good price to know what exactly helps me, and no taking all together.

Regards.

Gonzalo wrote on Feb 9^th, 2009 at 9:00pm:

Kudzu. What does it exactly??. No idea

Among other things, it blocks the serotonin 2 receptors and it stimulates the serotonin 1 receptors. Both of which can be good for relieving CH pain.

monty wrote on Feb 10^th, 2009 at 12:36pm:

Gonzalo wrote on Feb 9th, 2009 at 9:00pm: Kudzu. What does it exactly??. No idea Among other things, it blocks the serotonin 2 receptors and it stimulates the serotonin 1 receptors. Both of which can be good for relieving CH pain.

Thank you, monty

So all the ways carry to Rome. This two actions, I agree, can be good for reileving pain, because first acts reducting the binding power of the tranporter, and second facilitating the serotonine vesels contraction work.

The big problem of all this is that there's no way to know exactly what each natural product does and, for instance, what is the way or mechanism by witch they help.

Regards.

doctors orders......i must stop taking everything for 1 week but my lithium and the magnesium.  i'll soon find out of this has been helping at all

kevmd wrote on Feb 11^th, 2009 at 8:03pm:

doctors orders......i must stop taking everything for 1 week but my lithium and the magnesium.  i'll soon find out of this has been helping at all

Hey! I'm talking about the home made mixes. Nothing to say (by now) about doctor orders. And there's so many things you can't stop just from one day to next. Care you your better.

I think there might be something to this.

I recently added in Kudzu and St. John's Wort to my regiment I was already taking.  Here is what I am using...

Multivitamin (once before bedtime)
Calcium (w/magnesium) (once before bedtime)
Super B Complex (once before bedtime)
B12 (once before bedtime)
B6 (once before bedtime)
Taurine (850mg, NSI brand) (once before bedtime)
Melatonin (6mg, once before bedtime)

Added in:

Kudzu Root Extract (1200mg, NSI brand, 3x daily)
St. John's Wort (700mg, Nature's Way brand, 2x daily)

I am now experiencing more pain free time with my vertigo and shadows being greatly reduced.  I had just added in the St. John's Wort because depression was starting to really get to me and I have used it in the past with some success.  I was leery though about it helping at all with my CH's, so I am surprised.  My depression is lifting.  (any meds/vitamins I take affect me quickly, so I tend to see results sooner)

I had just started adding back in the Kudzu a couple days ago also.  Even just adding that back in eliminated the bruised eyeball feeling for about 3 hours that same day.  Was wonderful!

Last night I was able to play Candyland with my son, help my 14 yr old with her homework, and keep my 11 month old occupied.  I haven't been able to do that in 6 weeks!

Now, I am not sure if I am near the end of my cycle (this is the longest I've been in cycle so far) or if it's due to the mix I've added in, but I wanted to post my results with some of the ingredients in Kilowatt's combo.

~mel

Hello Melissa!

Glad to hear you're having some success with your regimen.  You've got all my stuff in there now except the scullcap.  Add in a little of that and you ought to be all set!  ;)  You're actually taking more of the kudzu and SJW than I typically do.

It's interesting that you're taking the 'B' vitamins.  I've taken fairly high levels of B-complex supplements for years.  Never really considered them part of 'the mix', but maybe they are!  :-? I've usually avoided them late in the day, though, since they can sometimes cause insomnia.  Maybe the melatonin cancels that out (?).

Anyway, great to hear of your success!  Hope you've got this cycle whipped!

Best regards,
Jim

Jim, correction on the St. John's Wort, I only take 350mg 2x a day (serving size is actually 700mg, which is 2 pills, but I only take 1 pill.)  Also, I'm not taking the recommended dosage of Kudzu either, which is 2 pills 3x daily, I take only 1 3x daily.

BTW, thank you! :)

Hey Melissa!

How's it going?  Still seeing a reduction in pain & shadows?  Did you ever get some scullcap to go with your mix?  I don't know how closely you were following the old 'Kilowatt3' thread, but Lorne felt very strongly that the scullcap was an essential component of the mix.  One of the other guys said something similar, too.

Let us know how things are working for you!  ;)

Best regards,
Jim

Hi Jim,

I still had the reduction in pain and frequency, but that was it.  Nothing more.  2 nights ago I got hit really bad, and finally ended up taking a Benedryl at midnight.  I then slept through the night till 6am.  

Last night I added the Benedryl again to my mix and slept from 8pm-6am.  I was so happy!  Especially since we have a huge snowstorm headed our way.

Now, it could be the Benedryl, or the ending of my cycle, so I'm not sure what to attribute it to, but I've been having more and more PF time lately, so it might be the latter.

Just wanted to say thanks though for sharing in what has worked for you!  I will say it helped me on a couple different fronts, especially with the intensity and it elimated the vertigo I had.

Take care,
:)mel

Hi again Mel,

Thanks for the update!  Did you ever add the scullcap to your regimen?  Just curious...

Hope you're in the clear now!

Regards,
Jim

No Jim, I have not added it.  I keep thinking I'm near the end of my cycle, but for some reason it isn't leaving.  My cycle was about 5 weeks last time and now I'm almost at week 8.

I'm just not sure of spending the money right now...

Not only that, I am so sick of taking so many pills, I am ready to chuck all of them. :-[

Alrighty, I wanted to let y'all know some things my headache specialist reccomended.

We were discussing natural treatments with her, so, here are the herbs she mentioned.

Bilberry - This is good for any kind of eye ailment. It's supposed to strengthen the veins around the eyes and make them more flexible, it was used in WWII by british pilots before they would go on flights... Because it helps with night vision.

I had an allergic reaction to it, so I won't be taking it, but I HAVE saw it mentioned elsewhere as being used for cluster headaches. My Mom is going to be trying it out for her headaches.

Riboflavin - B2. I've seen this mentioned some on here. I'll be trying this next... I'm on b12 injections, but they don't seem to be helping my hits any.

Butterbur - They have forms of this with toxins removed from it, My Mom thinks I MAY have tried it when I was young for my migraines. It's used for asthma and allergies, too. You may want to be careful with this one if there's a chance your testosterone is low. It can inhibit it.

Feverfew - This one has been used for migraines for a good long time, hard on the stomach. I have not tried it for cluster headaches, and most likely won't be able to for a while... My stomach is screwed up right now. This herb is supposed to help with inflammation in blood vessels in the brain. It's also used for Asthma.

She did mention Magnesium as a good supplement, and that b vitamins in general can be helpful. I've let her know about the skullcap, and am going to be emailing her some information on it, Kudzu, etc.

I'm also trying some chinese skullcap in the form of Airborne for seaasonal allergies... I'm thinking of getting some by itself, because it works differently than american skullcap. Anyone have any idea what dosage I should go for, or what would be equivalent to the dosage that's in the mix?

PFDAN to you all.
Mystina

Hi Mystina,

Thanks for posting the info about the additional herbs you're trying.  I've never used any of those, except the B2.  Please keep us informed what sort of results you have.  It might give someone some additional 'ammo'!

I'm staying with my 'original' mix, for obvious reasons.  [smiley=grin2.gif]

I started having a few shadows here and there right on schedule in early April.  Started back on the mix a couple of weeks ago, and stayed on it for about a week.  No more shadows, no HA's, no mess, no fuss - cycle broken for (I believe) the fourth straight time.

Thanks again for posting, and stay in touch!

Regards,
Jim