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les genser

a potential new option

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a fever would naturally disrupt the thermostat in the hypothalamus, maybe enough distraction to interrupt the usual pattern.

In fact, that must've been the case.  CH's came back after about 36 hrs of PF time.  Nice while it lasted.  Getting ready to give the tincture a try. 

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a fever would naturally disrupt the thermostat in the hypothalamus, maybe enough distraction to interrupt the usual pattern.

In fact, that must've been the case.  CH's came back after about 36 hrs of PF time.  Nice while it lasted.  Getting ready to give the tincture a try.  

I've always been pain free everytime I get the flu (and fever) - i used to actually welcome the flu because at least I'd be able to lie down for a couple days and just rest.

Count me in on the licorice root experiment - after getting nailed today for 2 and a half hour attack - I was off to the health store and grabbed Botanica's licorice tincture... it doesn't have a ratio or anything on it but it advises 10-20 drops twice a day.. a friend might have mushies for me tonight so i'm sort of torn which one to go with. I've tried mushies in the past without luck. For 4-8 hours after dosing i'd feel like the clusters couldn't touch me...but the next day they would unfortunately always return. 

Also just wanted to say thank you for bringing this to my attention les and also thank you to bonkers for posting your results.. i'm also 26 and have an atypical case of clusters to say the least...i wonder how much your son and I have in common.  Either way thank you again.  I'll report any results I have.

(Edited because I didn't want to turn the discussion here to one being about how flu makes ch's bugger off for awhile)

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For prolosam:

If you try the tincture & it doesn't work for you, it will clear your system in eight hours or less if you want to bust with the shrooms. I had similar results with mushrooms, although I confess it was accidental (and recreational). After taking a psychotropic (not full psychedelic) dose, I just knew I wouldn't trigger and enjoyed the hell out of myself; but the free pass ended with the effect of the dose. I repeated that particular experiment four times or so, with similar results. It was coincidental for me; that was before I got back on the grid, started doing research & found this place. All part of the circle I guess.

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By the way, on a personal note I should report that I am still PF... I have had a few close calls, as previously noted, and I have taken single doses of the tincture as preventative.

I am feeling that the triggering has been mostly environmental ( I am frequently exposed to dust, smoke & other annoyances) and because of the cell memory of those things, they are going to take a while to figure out how to fix. I have still not had anything even resembling an attack.

I have not heard back yet from my herbalist contact, but they are still on semester break. I will go looking for her the old fashioned way if I don't get a reply to the email soon.

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les - i hate to post this but as I do i'll just keep knocking on wood like crazy.

I took the licorice tincture yesterday.. divided it up into 3 doses each time 10 drops which is equivalent to 130mg (according to the bottle) I waited about an hour and a half between each dose and took it when I started to feel the cognitive problems that I associate with the shadows.

I know it can just be psychological, trust me I know, but the entire night I felt pretty damn good and this morning I arose with more energy than I ever have in recent years.

Of course i'm anxious and tramautized from yesterday (and all the years of this beast) but time will tell this morning how it goes.

This morning I took 10 drops when I woke up at 6am and I just took another 10 drops when I got into work at 730am.

No cluster feeling but i'm anxious as hell. 

I bought the skullcap but wanted to know more about it before trying it.

I currently take a beta blocker and anti-anxiety meds (oxazepam) which btw IMHO is a much better way to control anxiety associated with clusters than a long term SSRI like paxil or effexor.  It's unfortunate that in Canada less than 5% of docs have the guts to dispense high dose benzos, thankfully mine ain't one of them. I'd have probably become a complete recluse if it weren't for them getting me through the hardest of times.

Also, as an aside, I got my first treatment of mesotherapy in my neck and back yesterday.

I've also been getting prolotherapy treatments since September which have undoubtedly changed my life.

I also see an accupuncturist weekly for about 6 months now to help with the trigger points in my neck and before the clusters returned on dec 31 - i believe that the accupuncturist work was instrumental in keeping my cycle from returning. 

I know I'm one of the lucky ones - trust me I know - and my heart goes out to all of you that have to struggle just to afford triptans.  The system is unacceptable - even in Canada - unless you have means - you're SOL- but at least being a chronic sufferer since I was 20 years old makes me all the more resolute that when I'm older and if I have means - you all should be damn sure that I will commit my life to changing the way clusterheads are treated.  We deserve so much more and I just pray God gives me my health and the chance.

Keep you all posted.

Thank you again Les and of course alleyoop.

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prolosam: I think you are being smart to parse out the tincture until you are sure how it will react with your meds, which I am not familiar with. The skullcap is a very effective nervine, it is somewhat sedating (non drowsy, not like valerian) and it is anti-anxiety and considered effective in treating addictions. You barely notice it until you realize you are not all that chuffy. Again, I don't know how that would react with the stuff you are taking.

Trigger point acupuncture is f-ing marvelous. It totally defeated my clusters (when they were on the other side of my head) eight years ago. Then they came back worse on the other side, and I am now three states and 400 miles from the acupuncturist, who is a true wizard.

I'm gratified you're having good results. Don't worry about it being 'psychological'. The highest reality is in your head.

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That is fantastic news prolosam! I hope it continues to work for you and others.

Since I had already busted 4 times with RC before I saw Les' initial post it is hard for me to say exactly the role licorice root played in my much diminished recent cycle. But even though I believe RC kept the hard core HA's at bay I was still getting painful shadows. (I hope I am using this term correctly by meaning all the other pains that come with the cluster cycle.) The O2 would help minimize them but the licorice root would completely wipe them out within minutes of taking it. Really amazing stuff.

I am with prolosam in feeling extremely lucky this time around. I was in the middle of a bad cycle one year ago before I found this site and started using the seeds. I believed then that they eventually busted that cycle and have kept other ones from returning since then. And I have this board and all of you to thank for that!

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Hello

I live in England and have found a site called organic-herbal-remedies.co.uk  Would it be all right to get their ORGANIC LIQUORICE GLYCYRRHIZA GLABRA TINCTURE. Is this the same as you are talking about Les. I'm new on here so not sure if I have it right but would love to get it for my son who I wrote about on here. If this is all right I will send for some for him. Thank you very much for your time.

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For Geordie Lass: Thats the stuff. Glycyrrhza Glabra is the 'scientific' name.   Please refer to the earlier posts on this thread for contraindications, proper dosage levels, etc.

For anyone really worried about the alcohol, the tincture also comes as a "glycerate"; the alcohol has been cooked off ( you're right P.) and replaced with glycerin. Should work the same. They are available from the same places that sell the alcohol tinctures.

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Thanks very much Les. I will order some for him.

At the moment he is taking Verapamil and Sumitripton which he was told he could only take for 10 years as they would affect his heart and he's been taking them for about 9,

Many many thanks for this Les.

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Hello everyone

Interesting. After several years of getting by with only O2, and largely at the insistence of my great and gobby friend Carl, I am back in the game for trying something. I'm in the UK and ordered the tincture from the site mentioned by Geordie Lass. I'll let you know how I get on.

Phil

http://www.organic-herbal-remedies.co.uk/liquorice-tincture-100ml-56-p.asp

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For Geordie Lass: Please be cautious re: the Verapamil. Licorice root tends to raise blood pressure, and after nine years on it the interaction could be scary. Did your son have hypertension issues originally, or was the prescription specifically for the CH? I would STRONGLY suggest you check with the doctor prior to considering using the tincture. Additionally, I would also humbly suggest getting him the hell off the Verapamil. It does nothing, capital N nothing to alleviate cluster headaches. It is an off label use of a drug only marginally good at what it's SUPPOSED to be used for.

I would also venture a guess that nine years of oral sumatriptan has not really made a dent in the headaches either, but it could be causing a lot of collateral issues.

I am just surmising, of course, but I assume if either of these chemicals was working for him you wouldn't be here. You probably want to call the doctor on the carpet for this, too. Nine years of ineffective drug therapy is just burdening the body for no good reason I can see.

I apologize for semi-ranting and I in am in no way being critical of your son for taking these meds, just the doctors for continuing to prescribe them.

Anyway, to repeat cause its important: please check with your doctor regarding the drug interactions before thinking of using the tincture. Licorice root has a potent and immediate effect on blood pressure.

Best to you both. Les G

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Thanks again Les,

You're right about the damage these are doing to him. He has shortage of breath. His legs are all swollen, He has difficulty walking long distances, although he can walk short distances. Just lately he has found he can't lift heavy things without gasping for breath. I went to see him a few days ago and he had a CH then. It grieves me watching him slowly deteriate. He has an appointment at the doctors on 20th jan although he says he hasn't any faith in them any more and I think he's worried he will have to give up his job.He had to give up his job as heavy goods driver. He has another job at the moment but knows if he gets worse with not being able to lift heavy things he will lose it. I have ordered some Liquorice root tincture for him. I will tell him what you said about the blood pressure. I will let you know how he is when he has taken some of the tincture.

Gosh I have gone on a bit haven't I. Sorry but this lincture does seem like a light at the end of a very dark tunnel.

Thank you again Les

Marina

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Hi GL,

Welcome. While you're trying the licorice tincture you should be exploring other options here that others have found to be helpful. The licorice sounds like it could be a magic bullet. But it isn't going to work for everyone. If it doesn't work for your son, you should be ready to try something else. He should already be on high volume oxygen and energy drinks that contain caffeine/taurine. You can read about them and other helpful remedies in the ClusterBuster Files which you can access via the Forum Jump at the bottom of the page. The Oxygen Page in the Menu at your upper left will tell you all about using oxygen to abort CHs. It's very, very effective. If your son is going to be managed by a doctor, he should be seeing a Headache Specialist. Most GPs, Neurologists and Pain Specialists know virtually nothing about CH. Good luck.

Ron

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Ron is absolutely right. The more EFFECTIVE weapons you employ, the better your odds.

That certainly includes a neurologist with experience treating CH or better yet a headache specialist , diet and exercise, guidance in trigger avoidance, and certainly getting off those meds that sound like they are causing chronic edema and vasal thrombosis.

And please remember what was said above, and now I'm even more convinced: Taking licorice root on top of those meds could be downright dangerous.

Oxygen as an abortive would probably be a better option in the short term.

But Ron's suggestion to get a GOOD doctor is absolutely vital.

Les

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It seems I pressed a wrong button here before I finished  my message sorry not used to this.

My son came on to the internet years ago for help and was told to try a london clinic. I'm not sure but think the person he saw was a Mr Goadsby. Anyway he put him on to the injections but his doctor said he would not give him them as they would eventually kill him. The man in London then wrote to his doctor telling him to give him them.

Over the years he seems to have tried everything he could. The trouble now is his health is really deteriating.

The liquorice root tincture is something he hasn't yet tried so I was hoping he could come off the Verapamil and Sumatripton and avoid these side affects.

I really appreciate everyones help but believe me he has tried everything he can. The injections seem to be the only thing that is helping at the moment but as his health is deteriating they can't be good for him either as he has to take so many.

For years I have watched as Christmas's are ruined by CH as holidays are ruined by CH. As his life is ruined by CH.

My heart goes out to you all who suffer this terrible thing.

I pray that a cure will be found for all of you.

Thank you all

GL

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Marina, you wrote >>>Oxygen didn't work for him.<<<   I know you came here for help, not argument, but six months ago I was telling people that oxygen didn't work for my daughter.  Then it turned out that her doctor-prescribed oxygen set-up was all wrong. The prescription her doctor wrote would not have helped anyone with CH.  Once she got a proper set-up, it worked like the miracle that it is for so many people.  So I'm just asking you to be sure that your son gave oxygen a proper trial: high flow and a non-rebreather mask or tube (not cannula).  I have read here that sometimes it might take two 15-minute periods, with 10 minutes in between, to effectively abort some cluster attacks for some people. As others have said, the oxygen information pages here will tell you all you need to know.

Again, my heart goes out to you--it's a terrible, heartbreaking thing for a parent to endure--and I don't mean to be argumentative. I just want to be sure you're not missing out on a potential life-saver. 

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[highlight]..he has already tried everthing els. Oxygen didn't work for him. [/highlight]

I believe ya. Well I believe he's at least tried everything the doctors have to offer.

Here's the thing about that though: The most effective treatments aren't prescribed by doctors. Really.

Mushrooms and the like are easily the most effective preventative I've seen. I've experienced CH for 30+ years now, and have been on all the drugs too.

Doctors prescribe low flow re-breather oxygen. That is pathetic. they are unequivocal idiots for doing this and believe me your son has a lot of good company amongst CH'ers who have lost faith in doctors.

Here are 2 very important, critical actually, questions:

1) Has your son tried high liter flow (25 LPM or above) oxygen with a special regulator and a non rebreather mask, both of which medical supply places don't carry?

2) Has he tried psilocybin or RC seeds?

If the answer is 'no' to either of these then not only has he not tried everything, he hasn't tried the most effective preventative nor the best overall abortive, both of which happen to be non toxic. [Disclaimer: there are very rare cases of CH that don't respond to hi flow,100% O2. I can think of 2 - Michael and MJ]

I'm skipping over licorice root for now, because this is a brand new idea that as far as I know, just one person firmly believes he has broken a cycle with (no offense Les), while the therapies I mentioned above have been used successfully by countless CH'ers over the course of several years now.

Or have I missed newer reports of others convinced they've broken a cycle with licorice root? I'm certainly anxious to hear all developments.....

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I have been trying to send these pages by email to him but it won't accept them as an attachment. Is there some way I can get them to him. They are too long for me to type all out so I have asked him if he will go on this site and hear what you kind people have to say.

CHfather No I don't think you are argumentative just very kind and helpful. Thank you for your comments.

Thanks to all of you

Marina

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