How to prevent CH cycle, all advices welcome

[Sanni]

Hiya all. I have been keeping my eye on this site for some time through my friend. I also follow CH updates at facebook. I have been living with Cluster Headache for 22 years, 18 years episodic and the rest as a chronic. There is no medicine on the planet I have not been prescribed. Each year my cycle got longer and my attacks worse. Pretty much all the time I have been on verapamil, imitrex and cortisone. Been surgically operated. Tried all the possible injections and stuff. Twice near death at the end of my chronic phase. Finally, I did vice versa what the doctors told me and quit all the medications I could and I started to get better and been pain free for a while. Reason I am writing now is that I have pretty bad shadows every day and I really feel the beast coming back.

I am determined not to go on cortisone ever again and to avoid triptans. I have not managed to get rid of verapamil, seems that my body (=heart) has gotten too used to it. Currently daily dosage is 120mg+120mg+120mg=360mg. Been way over 1000mg in the past though, I would like to get rid of it altogether, it just does not seem to happen.

I have had O2 for the last 15 years and I currently have that. But now I would like all advices you could give on how to prevent my cycle for beginning. D3 and omega helped me in the past but for some reason my body can't take big amounts too well.

But I'd love any ideas on other stuff, busting (if cycle begins) and can seeds for an example be used as preventative? Liquorice root, all these things I have heard of from this board.

I will so appreciate any tips anyone could give me and please ask some questions since I am not too good to write about all this in a short space 

ADD 1: As a chronic a big, big role in my attacks was always my back, neck, shoulders, you know. Those lumps I had in my muscles and the muscle pains were almost science fiction. Many health care professionals still to this day don't believe their eyes when I show pictures of my back for an example when the cycle was at it worst. So any help with muscle tightness would be great; this thing just seems to have a life of it's own, no matter what I do, how relaxed I am. Pain in my back and shoulders was the first sign for me that maybe this hell is coming back...

[Bejeeber]

Hi Sanni,

I have pretty bad shadows every day and I really feel the beast coming back..

I think right now is definitely the time to bust for prevention. Busting works best when done before a cycle goes full blown, and for most of us busting is the most effective preventative out there.

If you could get psilocybin or seeds or tabs right away, well I would get to it at the soonest opportunity.

If not, you could order RC seeds online and have them overnighted to you. For RC, I would personally go with a reasonably substantial dose of 50 seeds before bed. The most likely side effect will be a deep restful sleep.

Some folks are really conservative with their first dose and will only take maybe 20 seeds. The way I see it is you have a very critical situation threatening to explode on you any moment and this is no time for being timid in dealing with it.

Meantime you could be working on procuring or growing some mushrooms as a backup, because for some of us RC doesn't work, but mushrooms do (and for others the opposite is true).

It may be possible the verapamil could interfere with the busting some - that hasn't been definitively established yet. It's more than likely that you'll still get plenty of benefits from the bust.

Looking forward to the day when you report a successful busting.  8-)

[Sanni]

A big, big thank you already. I don't think I can manage to get any psilocybin mushrooms in my hands, and my best way probably would be to grow my own. I live in Scandinavia, been @ the doctors in three countries here and in all of them they strongly have adviced me to stay away from any "magic mushrooms", seeds or liquorice root for an example. It just seems a big task to begin, growing mushrooms, although I know the reward if I can be pain free because of them.

But at this moment, I have ordered RC seeds online, now I am looking for liquorice root and skull cap. I got some liquorice tincture (factory-made but it should be the right kind) from my friend, chronic ch sufferer and I have taken it 3 times per day in a very small dosage. But it seems to be helping. I have still not had a full-blown attack but shadows. Will report my progress here and more advices are welcome.

Spoke to my doc too on the phone, his advice was cortisone, verpamil, imitrex and something called dehydroergotamin. I could not disagree more. From the medical field I will take O2 but that's that.

[CHfather]

Sanni, below is some information from Les Genser about what to look for in a licorice root tincture.  Since there are some concerns (which you seem to be aware of) regarding taking too much licorice root tincture for too long, or in combination with some other meds, you might want to look at this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

Note that down below there's a website in Europe from which Genser suggests ordering the correct tincture: www.organic-herbal-remedies.co.uk/

Here's what Genser says (as summarized by me) about the tincture:

>>>Genser wrote: “Use ONLY a whole plant extract (tincture) of licorice root (Glycyrrhiza glabra). Good high-quality tincture is available at any health food store and many pharmacies—Whole Foods, Mom’s, etc. Get the best one you can find; it should be about $20 for 2 oz.  Label should say 1:5 (that’s the potency) and 30%-40% alcohol by volume. Do NOT use teas, candy (which isn’t real licorice anyway, its anise) or anything other than a whole plant extract. This is very important.”

Later in the thread, he added: “DGL licorice tinctures, that is those with the glycyrrhizin removed will NOT work. The phytoestrogens which I believe to be the effective components here are compounds called flavonoids, and are derivatives of glycyrrhizin. For similar reasons, I suspect that glycerates, tinctures in which the alcohol has been replaced with glycerin, will also NOT work. My reasoning here is that the alcohol is heated off a regular tincture to make the glycerate, and I believe the heat is damaging or inactivating in some way those same flavonoids.”

He emphasized: “DO NOT use powdered prepackaged capsules, pills, or anything other than a tincture…. Powdered herbs lose their potency VERY quickly.”

To order by mail in the US if a store is not nearby, he suggested Mountain Rose Herbs (“all their stuff is organic and small batch and they make a 1:4 whole root tincture. It’s also priced decently, 9 bucks a fl. oz.”); Gaia Herbs; and Terrafirma.

In Europe, he suggested the website http://www.organic-herbal-remedies.co.uk/

He also provided instruction for making oneÂ’s own tincture, which can be found at the thread (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254).

A ClusterBusters member asked Genser about a different formulation—“It varies slightly from yours. Mine says: Herb strength ratio 1:3, alc 45-55% by volume. Dosage is 30-60 drops, 2-3 times daily. It costs about the same as yours. Whaddaya think?”  Genser replied, “That should work fine. The 1:3 means it slightly more concentrated than the one I made.<<<

[Sanni]

Thank you CHfather, Thank You.

Liquorice root tincture I got from my friend was the one from herbal.remedies.co.uk. I took it 5-10 drops 3 times per day for a week. Shadows are totally gone by now. Every little hint for ch cycle is gone now. The problem is, I read the thread about liquorice root just now and it clearly states NOT to use it while on verapamil.

Damn. I am not too optimistic that I can get rid of verapamil for good. I have never been able to get lower than 80mg+80mg+80mg without having heart problems.

I feel liquorice root is helping me way more than verapamil has done for years, but I am too cautious not to use it anymore.

Currently I have managed to cut down verapamil to 80mg+120mg+80mg= 280mg per day. But it's tough.

Still waiting for seeds to arrive. Anyone reading this who is not on verapamil, don't start this medication. Try liquorice root.

Will update my progress later, just wanted to thank you at this point 

[CHfather]

Sanni, why don't you contact Les and ask him about this?  It seems like you were taking rather small doses, since you were taking 5-10 drops 3x/day, and his recommendation for the initial dosage is about 30 drops 3x/day.  And while he doesn't like verapamil, it might not be completely ruled out if you are careful (for example, getting potassium and water and monitoring your blood pressure). I am just guessing here, but it seems possible to me that you could use some from time to time since since it helps you so much, and Les would be the person to ask.

You can contact Les by a Personal Message from here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=6960765A62606B766077050

If you don't get a response, PM me and I'll give you another way to reach Les.

[Sanni]

Great big Thank you and a *hug* [smiley=vrolijk_26.gif] 

[les genser]

Hi Sanni. I have made a rare foray onto the net today.

In reference to CH father's posts above, all I can add is : 'what he said'. Jerry should really be knighted (Order of the Icepack?).

I too suffered terribly with muscle complications, unattended they become triggers of themselves. If you have access to it, acupuncture- particularly the type referred to as 'trigger point' is amazingly effective (put me in remission for over a year). If you can't get acupuncture, at least look into stretching exercises for the neck, scalenes and upper back. I still do them when necessary, and they help a lot.

On the subject of verapamil, I have written (ranted? raged?) about it quite a bit. I have very deep concerns about using licorice root while on it; its playing ping pong with your circulatory mechanisms. Your system reacts to V. by attempting to regain its' 'normal' pressure; that's why tolerance develops.

Licorice root, via a potassium/sodium mediated process in the capillaries, causes a slight elevation of blood pressure by making them less 'leaky'; this is one of the ways it functions as an anti-inflammatory. I have concerns that the interaction and compounded effects of licorice and verapamil and the resulting systemic confusion could potentially lead to rebound of a most unpleasant kind. That being said, if what you are doing is helping you, be cautious and be aware.

I am distressed that doctors continue to prescribe verapamil for cluster despite recent (and some not-so-recent... 20 years old!) advances in the understanding of the mechanisms involved. No one believes clusters are vascular headaches anymore, except in a very secondary sense. The effort required to remove yourself from it would be well worth it.

Hope this is helpful; time to go back up the mountain.