My wife was trying everything she could to elevate her headaches (not diagnosed by neurologist yet.)

One of the only things that has had an effect is a little known (in Western Medicine) drug called Mulungu. It's more common in South America and particularly Brazil.

We are currently attempting to understand the (herbal) medication and how it is causing its effect. The result is to lessen the attack, which still happens but it removes roughly 75% of the pain during the attack, which my wife says is amazing because nothing else has even put a dent in this. She has some pretty major pain killers, so this is curious. It must be taken at the "shadows" stage to be effective for her, not during an attack.

So... anyone know what this stuff is, what it's doing in the brain, and why it might be causing a beneficial effect. We are now trying to secure a reliable supply and as with all herbal medicines we can't be 100% sure of the purity. Might trying looking for a Brazilian supplier but being in Costa Rica means importing medications is probably not going to work.

Any information you have on how this stuff works, if others have tried it (a google search on this board gave no results but an anecdotal account of another sufferer said it helped him,) and why this stuff isn't available through normal channels... any information and/or links would be wonderful.

Thanks,
John

John,

Did a little looking and it seems Mulungu Bark is used in South America as a relaxant and sleep assist. It is known to reduce blood pressure, so it isn't to be taken lightly.

Here's a link to look at:

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Peter.

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Hoppy

Hey John,

If you're in Costa Rica, which coast is closest and what's the nearest town of any size?

Regarding being in the jungle, I've worked up and down the Amazon from Manaus up river to the tri-border area Leticia-Tabatinga-Santa Rosa then up river to Caballo Cocha and on to Iquitos Peru working with the counter drug forces in Brazil, Colombia and Peru.  A mile out of town and you're in deep jungle... no roads... no nothing but jungle and water.

If your wife is suffering from cluster headache, at that latitude, 15 to 20 minutes in the mid day sun clad in a bathing suit without sunblock laying flat will generate up to 15,000 IU of cutaneous vitamin D3.  If she does this daily for at least a week she should start responding with a reduction in the frequency and severity of her headaches.  If she does start responding, she'll need at least five days a week of sun like this to maintain a pain free response.

If you can find some magnesium oxide, magnesium chloride or magnesium citrate, 400 mg/day wouldn't hurt either.  Drinking at least 2 liters of water a day can also help.

Again the main reason we worry about people with headaches that are not properly diagnosed as a CHer is the pain could be secondary to a far more serious condition, in which case, masking the pain delays a proper diagnosis compounding the problem.

Regarding Mulungu...  I went out with some Quechua Indians while in Iquitos, Peru and drank some of their fermented bark brew... It tasted great after a few Inca Colas, but I nearly went blind...

You got my PM so you have some additional suggestions to consider. 

Take care and please keep us posted.

V/R, Batch

Peter510 wrote on Mar 23^rd, 2017 at 2:48pm:

John, Did a little looking and it seems Mulungu Bark is used in South America as a relaxant and sleep assist. It is known to reduce blood pressure, so it isn't to be taken lightly. Here's a link to look at: Peter.

Peter and Batch,

We certainly aren't taking this lightly. I had previously taken mulungu as a supplement for anxiety, but when my wife was suffering she tried it because, as you are likely aware, you'll do just about anything to get rid of an attack.

After we did some testing, eliminating other medications she was taking, we narrowed it down to the mulungu as the major factor in avoiding the most severe part of the attacks. As was mentioned in my introductory thread elsewhere, my wife is no stranger to pain as she has EDS. She said this pain was on a completely different level. "Like the pain of childbirth in my brain, only worse." or something close to that. It was 4am when she quoted that and I was just barely awake. She was in tears.

What I'm trying to find is anything that explains what mulungu is actually doing and particularly what it is doing to stop the pain. I know it does something to help with the sleep, she's always had trouble sleeping and the mulungu is helping with that. It's a powerful drug, but it's not researched in western medicine as far as I can find.

Like so many other uncharted territories, we continue cautiously. I wouldn't advise anyone to start taking mulungu without supervision nor am I advocating it. I'm curious if anyone is currently taking it or if anyone knows more about it.

Peter510 wrote on Mar 23^rd, 2017 at 2:48pm:

John, Did a little looking and it seems Mulungu Bark is used in South America as a relaxant and sleep assist. It is known to reduce blood pressure, so it isn't to be taken lightly. Here's a link to look at: Peter.

The link was extremely helpful. The most information I've been able to get so far on mulungu. It seems like people on that board are looking for unregulated drug reactions, but obviously that's not what we are looking for.

So strange to see people experimenting with things like this, but when we are stuck on the fringes because the illness is not part of a large enough population, we find ourselves looking in corners no one else has looked for solutions. I thought the EDS had already put us in that category but CH seems to be even more of a mystery and a much smaller sample size.

Thanks again.

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;)