a potential new option

[Not4Hire]

No firemen have o2.

No[highlight],[/highlight](add comma) firemen [highlight]DO SO[/highlight]  have o2.

...fixed it for ya  8-)

modify to add:

Their tanks, Scott packs and such contain air mixtures like scuba tanks do and not highly combustion reactive oxygen.

Oxygen is not an accelerant to fire, like gasoline, but is one corner of the fire triangle, i.e. oxygen-fuel-heat.

That said, firemen don't take pure o2 into a fire. They do have o2 available as part of the EMT gear.

[Potter]

No firemen have o2.

No[highlight],[/highlight](add comma) firemen [highlight]DO SO[/highlight]  have o2.

...fixed it for ya  8-)

modify to add:

Their tanks, Scott packs and such contain air mixtures like scuba tanks do and not highly combustion reactive oxygen.

Oxygen is not an accelerant to fire, like gasoline, but is one corner of the fire triangle, i.e. oxygen-fuel-heat.

That said, firemen don't take pure o2 into a fire. They do have o2 available as part of the EMT gear.

   Thank you.  I had have a case of fat fingers.

          Potter

[les genser]

Well if we are done playing whats the Fireman got in his pockets, I think I understand somewhat the non reliance on O2. I too worked in a similar environment, not in an office, where you could find yourself anywhere. I would not have wanted to rely on anything I couldn't carry in my pockets. These awful energy drinks did not exist back in the day, but I would have had a bandolier of them, a bottle of horse aspirins, and likely an assortment of cafergot m&ms. I would have done isometric things to raise O2 levels and divert blood flow from my head. Sometimes adrenaline would have served as an instant abortive. Most of the time I would just tough it out. It sucked, but even if I knew Oxygen would work there was no way I could have carried it around. I actually spent lots of energy trying to hide the fact that anything was wrong with me at all. Stupid.

[les genser]

For Yury: Buono sera. I'm sure he's a wonderful person but Dr. Leone sounds like the Michael Bay of pharmaceuticals. (For our non American friends, the pop cultural reference refers to film director Michael Bay's penchant for huge, unnecessary explosions as a substitute for story development or substantive content. Brought to you as a public service). The I need a bigger hammer approach will never work in the long run.

I have an acquaintance with Parkinsons who had electrodes and a pacemaker installed at Hopkins, and so far it has made a huge difference for him, so I have an appreciation for the value of that sort of technique, but it is not what you would call a solution. It does nothing to remove the problem, it just builds a bridge around it, if you get what I mean.

There is new research out which the establishment is not at all happy with which demonstrates that many of the most commonly used and prescribed antidepressants, etc. are absolutely useless; no better than placebos (and the placebo effect explains why they seem to work at all). If you take into account a placebo effect, which can run as high as slightly over 50%, and then factor in the pharm industries own estimates of the percentage of people their meds (for cluster) are effective for, and then additionally factor in the percentage of time that they (admittedly) just don't work for various unknown reasons, then you arrive at the unmistakeable conclusion that hitting yourself in the head with a rock might be an equally effective approach.

I'm not mad at big pharm because their stuff doesn't work.

I'm mad at them because they are the modern equivalent of 19th century patent medicine hucksters selling bottles of snakeheads in tobacco juice as cure alls. I'm mad at them precisely because they do know that their stuff doesn't work and they do not care.

The fast food industry produces lethal garbage which makes people fat and sick and they don't care.

Even the entertainment industry produces crap, which they know to be crap, which they market anyway cause we buy it and they don't care.

I don't want to go all Network here but for F's-sake we deserve better, and we will get it only when we call the bastards out.

Step one: Stop taking ineffective and systemically damaging medications that are not helping and probably aggravating your condition. Use methods and materials provided by the Earth herself to obtain real relief and show the medical establishment and their other victims that their perceived hegemony is an illusion. Stop allowing your doctor to treat you like he's hitting himself with that little rubber hammer..reflexively. Rote prescription of ineffective drugs with all the information out there is inexcusable from people who get paid a good chunk of change for their 'wisdom' and whose first tenet is 'do no harm'.

AAAAHHH. I need to go find some kittens.

[HealTheAccursed]

Just bought some licorice root extract from Whole Foods but it says 1:2 potency and it was also alcohol free.... would the dosage need to be adjusted? My other question is whether this is meant to be preventative or abortive, because based on what you have reported it seems like this could be both.

[Lieutenant2]

Just wondering why a fireman wouldn't have Oxygen at work?

Potter 

Well Potter, glad you asked (not really, but I'll humor you). My particular station runs engine and heavy rescue, no medical. So, we don't have oxygen or anything else you might find on an ambulance, short of maybe a first aid kit. Now, does that mean I don't have access to oxygen? Certainly not. I could have a tank and regulator pretty quickly, but my issues are the same, regardless of who owns the O2 (me or the city). It's just not my chosen path for dealing with CH, I prefer to search for the cause of the pain and stop it there. The licorice has provided part of the answer, I'll continue to search for the rest.

[les genser]

For Heal the Accursed (really?? how...biblical):

A 1:2 extract is just a really concentrated tincture. I am not all all sure of the effectiveness of the herb with the alcohol removed. You need alcohol as a solvent to extract the herb, but removing it is usually done by heating which I am theorizing damages the active chemicals. I have noted this before as some folks have not had a good experience with DGL or alcohol removed products. Try it; you'll know right away if its working or not.

Licorice root functions as a cycle breaker. Taken remedially 3X daily at the very onset of a cycle, there are a range of possible outcomes, all of which have been reported by people: 1. It will break up and abort the cycle completely 2. It will sharply reduce the number and severity of headaches and eliminate some types (i.e. 'night hits') but not others 3. It will reduce headaches but not remove 'shadows' (CH associated TG and other neuralgias.)

Taken as an abortive, it will interrupt a headache cycle at the hypothalamus, preventing a full blower. However, those shadow neuralgias can be a bitch to get rid of and need to be mechanically aborted.

We are not just chemical factories, though, and CH has many dimensions as do most disorders. The true value of a therapy such as licorice root or busting is that it provides breathing room. It is vitally necessary to pay attention to yourself, your physical person, your emotional self. It is a lot easier to pay attention to your body when it is not trying to kill you.

[les genser]

One more thing I should have mentioned, two really as this has come up again recently:

1. Licorice root will work best for people who do not have a heavy recent history of pharmaceutical use, particularly SSRIs.

2. DO NOT under any circumstances use licorice root concurrently (or even close to, ever) with triptans such as imitrex or with verapamil. You may find out exactly what is meant by 'cluster headache'.

I need to say this now and again, but when you take a dose of this tincture, it absorbs very quickly. Within 20 minutes you will feel it affecting your blood pressure. You will feel it affecting your mood. It is a powerful substance which reacts with several classes of prescription drugs, so ask your Doctor if you're not sure, and then ask me anyway cause I don't trust them where herbs are involved.

[yury66]

Hoi les i'm really amazed that they do not prescribe meds like anty epilepsy which vary in name and potency there it being here one of the meds they prescribe the most in specialized neuro hospitals for CH the doctor said it would calm me down and decrease the electrical activity in my system ,i just stopped taking it yesterday and had a rough night ,it seems when it's very humid out i get worse i don't know how much interaction with weather but i do get hit worse :-/ well no more meds since yesterday :-X hoping and riding out pain ....hope this time i can make it!

[les genser]

The drug you were given is a triptan which is not marketed in the US at all which scares me since the FDA allows the sale of pretty much anything.

Here in the US, triptans are a bad and expensive joke the drug A holes have been perpetrating for years. They were never intended or designed to treat cluster. They rarely work as advertised. They are ridiculously expensive. And here's the funny part: For your money, you get a drug which may or may not relieve some of your pain, but what it invariably does is nudge the pendulum harder so your next attack is worse due to rebound, making you take more of the useless expensive crap, starting the whole ride up again. All it really does is put your money in people's pockets whose heads do not hurt. You want to ride that train, be my guest. Most people do, mostly out of ignorance.

The more you learn about the pharmaceutical industry and its hundred or so year ride to the top of the pops, the more frightened and disgusted you will get.

48 Hours should do for most of the rebound hits to clear your system; I would be very surprised if you don't start feeling better.

[yury66]

Thanks Les but that med is not a triptan the pharmacist told me that it's clonazepam ,do you know what it is and why they proclaim it's efficiency for CH in  this part of the world??

[Pixie-elf]

Thanks Les but that med is not a triptan the pharmacist told me that it's clonazepam ,do you know what it is and why they proclaim it's efficiency for CH in  this part of the world??

You may want to taper off of that instead of quitting it cold turkey. What's your dosage?

Stopping it without tapering it down can trigger seizures. withdrawals, a lot of other nasty things...

Mystina

http://en.wikipedia.org/wiki/Clonazepam

[CHfather]

yury, my daughter was once prescribed clonazepam for her CH, so i did some looking into it.  i don't claim to be an expert, but here's what i found.

in a couple of very small, quite old studies, clonazepam was considered an effective treatment for cluster headaches (in one case, combined with lithium).

http://www.ncbi.nlm.nih.gov/pubmed/1104361

http://www.ncbi.nlm.nih.gov/pubmed/10498239

but today, from what i have read, it's only an "exceptional" treatment in limited circumstances, for example: http://www.ncbi.nlm.nih.gov/pubmed/18563291

it's more effective for trigeminal neuralgia.  it's an anticonvulsant/sedative,anti-anxiety drug, so, yes, it might "calm you down."  some people with CH have taken it for sleeping problems, but i've never seen anyone say it helped their CH. 

it's not listed at all in the european standards for treatment/"prevention" of CH, at least as i read those standards: http://www.guidelines.gov/content.aspx?id=10471

as mystina said, and as is reinforced in the wikipedia page she linked to, abruptly quitting clonazepam can lead to nasty withdrawal symptoms.

[yury66]

THANK YOU CHFATHER that clears my mind on this drug  > that i have already cut down to 4 drops at night even though i never took more than 10 or 12 in the hospital they were giving me 20 dr twice a day , now I'm only thinking about detoxing , I think i dropped the verap too quickly as i went from 350mg a day to 40 in less than a week maybe that's whats hitting me hard ,but i can't go back now i must move forward towards detoxing to really give the option a chance to work..thanks again

[les genser]

Yury, the medication you named in your earlier post was Rilamig (Frovatriptan). Clonazepam is no better.

[1961mom]

Yuri, there are (anti-seizure meds) such as gabapentin (generic name is Neurotin) commonly prescribed here in the US for CH pain, notably for the nerve or shadow pains.  Verapamil, to my knowledge is a calcium channel blocker....it's borrowed from angina/high blood pressure patients.

http://www.drugs.com/search.php?searchterm=verapamil

Verapamil is in a group of drugs called calcium channel blockers. It works by relaxing the muscles of your heart and blood vessels.

[yury66]

good morning,Rough night guys REALLY ROUGH  I'm not taking the root decreased verap to 40mg and 4 dr of rilamig and man!! had 7 attacks and the O2 would NOT work :-X had to take the imitrex  :'( dosed the vile took two micro shots just to get out of the terrible tunnel i was in , but i don't know what to do at this point :-/ the 02 can't save me and i can't take the hits the pain is waaaay too much for me ,and i have to get rid of the drug before taking the root again....this morning a CH friend from Torin called me and said they had prescribed him a drug called NIMOTAP  supposedly it's an antagonist of some kind ,do you guys know anything about it? :-?

[les genser]

Nimotop is a calcium channel blocker that they are essentially looking for applications for; basically an unsuccessful drug like most everything else they push on us. It is, like Verapamil, a stupid drug to give cluster patients. Prescribing it for cluster is totally off label. Again you mention Rilamig; are you taking that and clonazepam? they are completely different substances.

You are an unhappy textbook example of a body desperately trying to regain equilibrium in the wake of extended chemical assault.

Just to be sure... to repeat, do not take licorice root at all until you are clear of poisons; the interaction is horrible. For the clonazepam if you are indeed taking it thats basically two weeks.

[joey303]

Hey guys.  I, too, am very interested in this licorice method, but I've been taking verapamil for many years and am scared to stop, so I'm looking for pointers.  It's the one drug to which I've been most sensitive as my doc spins me through the Rx choices. 

On the one hand, I know that verapamil has played a role in keeping my headaches "in check" because when I miss a couple of doses -- or taper off completely like I did recently for a week -- then the headaches are relentless all day long.  On the verapamil regimen, I'm headache-free through the day until early evening.  On the other hand, I easily believe the notion that the verapamil is crappity smacking with my body's natural feedback loop and may have even played a role in converting me from episodic to chronic. 

Les says no verapamil while taking the licorice.  So, how do I best stop the verapamil?  The last time, I dropped my dose by 25% each day for four days and ended-up bedridden for the next four, until I couldn't stand it any longer and started a rare prednisone cycle.  Any ideas????  Should I just stay on it while I try the licorice?

BASICS:  CH for 7 years, chronic for 3, Verapamil 240mg/day, Zonegran 200 mg/day.  O2, diet coke and sometimes axert @ each attack.  1-2 attacks per night.

[les genser]

I am really going to need kittens. Another F-ing idiot prescribing an antiseizure med that "has been studied" (drug co. phraseology) for MIGRAINE.

Let me tell you a story. Your car isn't working right so you take it to a professional who tells you that the problem is in this little black box that the car won't work without. So you say fine, what exactly is wrong with it. The professional says I don't know. You say well, how exactly does it work. The professional says I don't know. So you say if you don't know how it works and you don't know what is wrong how do you propose to fix it. And the professional says no problem. We're gonna pour some stuff in this end and then send you out to drive around for awhile and see what happens. If it doesn't work, well, we've got lots more stuff lying around.

Would you let them? It amazes me; no make that it positively stupefies me that people who would never let someone treat their car in such a fashion allow doctors to do it to their f-ing BODIES (you only get one) every goddamn day.

I am not in the least surprised you went from episodic to chronic. Heres just one of many tidbits for you: You know your hypothalamus, that little indispensable electrical incandescent jewel of tissue that we have some problems with? Well, one of its many functions is to regulate body temperature. When it can't do it properly, or is faultily triggered, guess what? Cluster headache for 500, Alex. But the zonegran can seriously impede your ability to eliminate excess body heat, reducing your ability to sweat. Put that in your feedback loops, trace it back and.. oops. Oh, and the drug company says you might also think about killing yourself.

And there is a special place in my heart for verapamil. It works by turning blood vessels limp like overcooked spaghetti, losing tone and allowing blood volume to pool. Your blood vessels recognize this limp state; its called approaching death and they try desperately to regain the tonic state and naturally they overdo it, until you take your next dose. Verapamil also is a tolerance drug, meaning you need heavier doses to achieve the same effect over time. 'Tolerance drug' is synonymous for crap your body doesn't want in it as its working overtime to negate the effects. You cannot name a drug which exhibits this effect that is a beneficial long-term partner in a human body. In fact, this particular quality is a giant red flag. Think heroin, opiates, barbiturates, alcohol. All tolerance drugs.

It would be merely comical if it were not for the fact that it cures cluster headache like bloodletting cures strep throat. It doesn't work and is prescribed based on a faulty understanding of the etiology of the condition. I am sick of going on about this shit. It is counterproductive poison that has no business in the body of a cluster patient.

Your doctor seems like a member of the bigger hammer club.

And a triptan as well? holy shit. He's a regular Doctor Robert.

I presume you are not happy with the direction your illness is heading. You should be more afraid of the consequences of remaining on verapamil than the prospect of stopping it.

You are a walking chemical cocktail and you need to get clean before you even think about licorice root which will interact unpredictably but unpleasantly with all of your meds. I assume you've seen Scanners?

[yury66]

hell yes Les I'm with ya on all that you state! but in  the middle of the night i get hit every hour and a half k7 k8 and O2 wont work "it just wont put out the flames" i can't take imitrex ...what do i do go out my fkn mind  :-X so yes i did take the root together with some residual verap and imit in my system so i guess that made  all hell brake loose worse than ever :'( so what i thought is maybe i decreased the amount of verap too quickly so made it worse ,ho and also the fkn antiepileptic crap was in there ....SO I MADE AA MESS OF MY SELFE how can i detox if i have nothing to hang on to not even 02?? :-/

[Bonkers]

Same with my son, Les. Nothing has worked to ease his pain save his F'in' methadone. I so wish O2 worked. I wish we could find something besides the psychedelics that helped. He used to get 1-2 weeks PF with every bust. Then a few days. Now, nothing. 4.0g of shrooms and he just went to bed. Same thing with 2 tabs of acid. We're gonna have to give it a break for a few weeks before we try again. In the meantime he's got methadone. And the Doc won't give him anywhere near enough to help. If he could get off the methadone his whole life would be better. But what the hell do you do? He has nothing else. Any ideas?

[les genser]

Guys, I am so sorry for your respective situations. It is so embedded in cell memory that I feel the fear of the pain in the depth of my gut.

I am going to consider this for a while, but a few observations:

1. Ron, the busting (or the licorice) has to work to disengage the hypothalamus; its like sticking a key in a lock. But that is only (maybe less than) half the picture. The associated neuralgias, for lack of a more accurately descriptive term, are if anything the bigger problem, and I believe the cause of the much greater proportion of cluster pain than anything else. A telltale clue is that oxygen will not affect these, as they are nerve induction.These are the things that when triggered (question #1: what triggers them?) can go off for hours and hours, fade, come back, never really leave, and set off other things. They are damn near impossible to get rid off, and they are, and this sucks, absolutely impermeable to drugs even past the point of unconsciousness. Most drugs prescribed for cluster, in addition to being ineffective, actually materially contribute to intensifying and continuing the syndrome.These unpleasant but undeniable facts leads to the inevitable conclusion that the only solution is to identify and remove the triggers. This is a very tangled problem as triggers may be purely physical (cigarette smoke, alcohol, etc. ), purely emotional (chronic stress) or most likely a combination of factors. Also, as I have said only half jokingly, it is easier to listen to your body when it isn't trying to kill you.

One thing which should be cause for some encouragement: It is extremely rare that any pathological condition underlies cluster. On most levels, there is literally nothing wrong. Interrupting the triggers leads to remission.

You know better than I how difficult methadone withdrawal is. The doctor will not prescribe more; a blessing in disguise since it will not work anyway and it would increase the difficulty of withdrawal.

I am truly sorry I cannot be of more help here. I am going to think about it today and get back later. Have to go to work.

Yury: Licorice root will not work as an emergency abortive. It will aggravate symptoms caused by removal of verapamil. I am completely confused as to whether you are taking (as well) rilamig (triptan), axert (triptan), clonazepam. None of these should be present. Abort using ice, isometrics, acupressure, caffeine, screaming if it helps. No cigarettes, no alcohol. It will not be pretty. It may help to remember that none of the things you have been taking have done your headaches any good. Stopping them now is the most positive step you can take.

OK really late now. Back later.

[Bonkers]

What you've said here has already been a great deal of help. Thanks. Clarifying our situation, while not providing much of a fix, narrows our options so our energy isn't so scattered. Sure glad you're here, Les.

[PHRF224]

I agree, Les is a gem.  While this episode was a bit longer than expected, 12 weeks, having nothing but the licorice for the last 4 weeks now, I feel good. Pretty sure I'm into remission now.  Today was my last day at work. Our jobs were outsourced and today I enter a new stage of life without a job, yet I feel not stress, but there is emotion.  Even the celebratory beer last night went unpunished, so I reckon the remission is here. 

Of course it could also be due to the kitten therapy Les mentioned.  Not sure what the dosage is supposed to be though, so I've started with 3 kittens per day.  That's my limit for juggling anything at one time.