I am a former CH sufferer. My son has them now and we have run the gamut of fast abortives with mostly failing success, until this.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

My son indicates that within 5 minutes of smoking 1/4th of a pot cigarette, it completely aborts the CH headache.

My son is not a recreational drug user at ALL. He hates the way any drug legal or illegal make him feel, but it beats having the pain he says.

He has been testing this now for over a week and at every single onset, the CH is completely and totally aborted within 5 minutes of inhalation of a tiny amount of pot and every single time his headache starts to come on. Every single time.

I have never condoned use of illegal drugs and this is not reversal of my position. However, desperate times often mandate desperate measures. We all know how horrific these hurt and the helpless feeling when we're in one.

As an alternate delivery method to smoking, marijuana glycerin tinctures show some promise in our early trials. A few drops of tincture under the tongue and it's absorbed into the blood stream within 5 minutes. You can Google these glycerin tinctures and find the ways to make them should you consider this method. The glycerin base is the key to rapid absorption.

I just thought I would pass this on. I know first hand what CH are all about and while I out grew mine and now I'm almost 60 years old, the remembrance of the pain, the agony and those thoughts of desperation still linger. Watching your son go through them is even worse and particularly when you're helpless to stop his pain.

Of course I can't say this will work for everyone, but what I can say and without any question whatsoever, is that this works miracles for my son, and when all the other abortives have had mixed results and absolutely NONE have not stopped the pain as fast as pot.

I hope this post does not get deleted as it may actually help some. I am not an advocate for illegal drug use, simply an advocate for CH relief and the scientific research done so far seems to substantiate my sons claim.

Should you live in a state where Medical marijuana is obtainable, consider speaking with your doctor. There are also doctors listed on the NORML site by state who support it's use for medical purposes ONLY.

My hope in posting this is that it actually helps someone, so I took my time to post this. This is just an alternative to consider should you deem necessary or appropriate to take more drastic measures.

MartinL,

Hello and welcome.  If you do a search of this site, there have been threads brought up about the use of weed and CH.  For a majority of cluster sufferers, pot makes the cluster headaches worse, not better.  I also have not heard of pot aborting a CH either.

Please know that your post might be a source of contention for some of the members here.  I am glad to hear that your son found something that works for him, but I cannot help but be a bit skeptical.  I hope you understand.

Take care,
Melissa

As far as an abortive goes, if pot works for him, he would be a one in 10 million case. Vaso constrictors have the best track record of aborting CH. If Marijuana, a vaso dialator, aborts his attacks....it would truly make him an unusual case.

Joe

I was skeptical as well and had all sorts of personal issues but for whatever reason it works for him. This is not an endorsement, simply an observation.

As most of us have tried everything under the sun, this might be a consideration. He is completely and utterly opposed to LSD/LSA/Shrooms and as a matter of fact I spoke to him this morning in which he indicated a headache earlier. I asked him if he took the tincture and he said no, that he used his other abortive. Clearly he's opposed to taking drugs of any kind, except in the most dire of cases.

As stated, it may  not work  for all, but clearly shows signs of eliminating it for some. As all treatments conventional and not, YMMV.

My abortive was Sansert. It worked for me but is not currently available in the USA.

I wont defend, endorse or argue about the merits of this as there is nothing in this thread that will be a benefit to my son. All I did is report what his finding were in hopes of helping others. I see now my good intentions were scoffed at. Sorry, I wasted my time and your bandwidth.

Good luck to you.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

       Kinder gentler Potter

Martin its' true you can no longer get Sansert in the US however, you can get methysergide which is the same drug without the brand name made up by a compounding chemist. Many clusterheads do so and I just wanted to bring that to your attention

This is not meant as a rude comment so please understand how I'm making it!!

When was your son diagnosed with CH? Did he have an MRI? The reason I ask is it's truly difficult to understand how using a vaso dilator on a vaso dilating condition where every other treatment requires vaso constriction for efficacy is pretty incomprehensible.

I'm very pleased it is aborting his pain, I'm just kind of not sure it IS CH.

This is not meant to be confrontational at all, merely concerned. I'm more concerned he could have another headache condition or something more insidious going on.

There are some pretty grim HA types and the fact is that with over 600 HA types some symptoms may overlap. It may also be that he has a secondary headache condition in addition to CH.

My personal opinion would be that he needs to see a headache specialist neuro asap and determine what is going on.

Regards to you both and I hope pain free time continues

Helen

Has he tried O2?  It's less expensive and legal...

I read the link you posted.

It seemed strange that they would post benefits of "Hannabis' from only doing research on that ONE 19 yr old kid. That just doesn't sound right.

On the other hand, if they had done it on 20-30 CH males and females and reported their findings, I may have taken a bit more interest.

But only doing the study on one individual instantly loses my interest.

Kimmie

I would say that 99.9% (that 0.1% would be your son) of us would say that ganja triggers clusters.  End of story!

I also never heard of a "former" cluster sufferer.
You're just in a LONG remission my friend.

Chad

Kimmie,
I believe this is a single case study they are reporting on to show something out of the norm.  This could lead to more extensive research in the future.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I get the impression that Martin's son read the article, and this link from the article, and tried it with positive results.  Rare indeed, and absolutely note worthy...Thank you Martin.

Thomas

This thread should be re-titled: An abortive that actually worked for my son.

Brew wrote on Mar 18^th, 2009 at 1:42pm:

This thread should be re-titled: An abortive that actually worked for my son.

   And one other feller.

       Kinder gentler Potter

i dont get it.
How can you be so sure in only a week's time that it works?
How do u know if its not a low cycle or just heavy shadows?
Your son isn't curious about getting in this site himself???
how come you dont ask anyone if they have ever tried this???
aren't you curious yourself???
if this works as you claim in a only a week's time how come you
weren't here previous week when nothing worked??  
what kind of medicine is sansert??is there any similar under other brand name?care to discuss?
and finally what are your intentions??not implying anything
just direct question.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Robbins MS, Tarshish S, Solomon S, Grosberg BM.
From The Montefiore Headache Center, Saul R. Korey Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, USA.

Pharmacological preparations of cannabinoid compounds have a variety of therapeutic uses in medicine, including different pain syndromes, but have not been previously reported as beneficial for cluster headache. We present a patient with cluster headache who was refractory to multiple acute and preventive medications but successfully aborted his attacks with recreational marijuana use; subsequent use of dronabinol provided equally effective pain relief. The beneficial effect may be related to the high concentration of cannabinoid receptors in the hypothalamus, which has been implicated as a site of dysfunction in neuroimaging studies of patients with cluster headache.

PMID: 19220500 [PubMed - as supplied by publisher]

Don't try to be overly cynical sounding Black.

We truely want these people to stick around and try not to scare em away.

MartinL wrote on Mar 18^th, 2009 at 9:11am:

I am a former CH sufferer.

How can YOU be a "former CH sufferer"????

I know nobody here that has been cured.

..............Yet


(Just my positive spin of the day)

Chad wrote on Mar 18^th, 2009 at 3:45pm:

MartinL wrote on Mar 18th, 2009 at 9:11am: I am a former CH sufferer.   How can YOU be a "former CH sufferer"???? I know nobody here that has been cured.

I haven't had a CH since about 11:45AM, so as far as I'm concerned - I'm a former CH sufferer for now.

black wrote on Mar 18^th, 2009 at 3:03pm:

i dont get it. How can you be so sure in only a week's time that it works? How do u know if its not a low cycle or just heavy shadows? Your son isn't curious about getting in this site himself??? how come you dont ask anyone if they have ever tried this??? aren't you curious yourself??? if this works as you claim in a only a week's time how come you weren't here previous week when nothing worked??   what kind of medicine is sansert??is there any similar under other brand name?care to discuss? and finally what are your intentions??not implying anything just direct question.

Sansert is a brand name for methysergide maleate, and it is NOT used as an abortive, as was implied by MartinL. It is used as a preventative.

I'm on it right now - 2mg 3x/day. And it can be gotten in the US - it's just not manufactured by a big drug company anymore. One has to obtain it either through Canada (I got a one-month supply several years ago for about $120), or through a compounding pharmacy.

I believe it was developed about 50 years ago by chemists to have the same type of headache preventing effect on neuro-receptors as LSD did without the psychadelic side-effects. It has some side-effects of its own (increased risk of fibrosis of the kidneys and heart valves), therefore you need to take a one-month holiday every 6 months you take it.

I wasn't even going to post back on this site. There's nothing in this method for me one way or another. But I will clear up some confusion.

My son is 26 years old. I am near 60. My clusters stopped near the age of 35. Both my sons and mine were episodic.

He cycles 3 times a year on average, sometimes more.

How, why this works for him, I have no clue but it's a near instant abort. While I hate the idea of the drug, I am grateful for the instant relief this gives him. I'm not scientist, I'm just a Dad.

Quoting from that article: In 2007, investigators at Italy’s University of Perugia, Department of Public Health, reported that patients with chronic migraines possessed "significantly lower" levels of the endogenous cannabinoids anandamide and 2-arachidonylglycerol (2-AG) in their platelets compared to age-matched controls.

"These data support the potential involvement of a dysfunctioning of the endocannabinoid and serotonergic systems in the pathology of chronic migraine and medication-overuse headaches," they concluded.

I could not find the other/article study on this, if you look on Google, you may find something. The article mentioned something about the canniboids attaching themselves to the hypothalamus. They linked a dysfunctional hypothalamus with CH.

I do not pretend to know what's going on. What I can say is this, it appears to completely reverse the onset. My guess is that it is not blocking the pain only because my son reports no symptoms at all, not even that after phase dull throb we know so well.

As a matter of fact, while I was typing this, my son called. He said a CH was coming on, 1/2 eyedropper of the tincture did it again and he believed it was two minutes. He reported he felt perfectly fine and no symptoms of a headache at ALL.

Is a week long enough? Well, one try is enough to tell, it either does or does not. As he's is a full cycle now, with two or more headaches a day, this is an easy one to test. It works for you yes or no. It does for him and yes he's has been member of this site at one time.

Try it or don't it's up to you. I just thought I would pass on some potentially good news. If it helps even one person out there, my job is done.

I hope everyone cooler heads and shorter cycles.

My only concern reading this topic is the ADDICTIVENESS of any pain relief medication, especially cannaboids or opiods.

Here we are discussing the use of an illegal and HIGHLY ADDICTIVE chemical as an abortive. Its not a preventive, its an abortive, meaning that it needs to be used again and again, at each and every headache attack for it to work for the length of the cycle.

We all know that during a high cycle, one can get as many as 6-8 attacks a day, with most having around 4. The cycle often lasts several weeks, or even several months. For a person to not use any preventive, but only cannabis as abortive, will need to use it 5-6 ... 8 times a day every day for several weeks ... that person will develop a very strong addiction to cannabis.

We also know that like nicotine, once the brain is addicted to cannabis, it will change structure with new neural pathways and extra receptors developed. If it is found that the hypothalamus of a CHer has a higher number of cannaboid receptors, guess what the development of more of those receptors will do to his CH ? Yes, it will make his CH worse.

Martin, I strongly suggest that you follow up on your son's headaches very closely. Ask him, or you yourself, keep a diary of the headaches and of how much cannabis he is using, noting down any changes in the characteristic of his attacks. My bet is that you will find after the first couple of weeks, he will get more attacks ( some would be rebound headaches ), the attacks will be more severe and he will need more and more cannabis to control the situation. In the later date, once the addiction has started, he will get phantom headaches just so he can use more cannabis.

This is what happens to people who use opiod pain killers to control the pain of CH.

I know that cannabis is used widely as pain control in terminal conditions, but here the major difference is that these people are TERMINAL. They dont have much more than a few months to live, so it does not matter if they develop an addiction to anything, they are dying anyway. An episodic 28 years old should not be treated as terminal.

Now if we compare it to the other also illegal substances used for CH like seeds or shrooms .... They are different because they are used as PREVENTER not as ABORTIVE. From what I understand, you use seeds or shrooms to break the whole cycle and/or to block all attacks, you dont use it each and every time you get a headache. I am sure if one uses shrooms or seeds purely as a abortive, ie several times a day for days on end, one will end up with a much worse problem than CH to start with.

I would rather recommend your son try oxygen as abortive, its safe, its effective, cheaper, not illegal and most definitely non addictive. Oxygen does not alter the structure of the brain, cannabis does.

Painfree wishes to your son.

wrote on Mar 18^th, 2009 at 5:18pm:

My only concern reading this topic is the ADDICTIVENESS of any pain relief medication, especially cannaboids or opiods. Here we are discussing the use of an illegal and HIGHLY ADDICTIVE chemical as an abortive. Its not a preventive, its an abortive, meaning that it needs to be used again and again, at each and every headache attack for it to work for the length of the cycle. We all know that during a high cycle, one can get as many as 6-8 attacks a day, with most having around 4. The cycle often lasts several weeks, or even several months. For a person to not use any preventive, but only cannabis as abortive, will need to use it 5-6 ... 8 times a day every day for several weeks ... that person will develop a very strong addiction to cannabis. We also know that like nicotine, once the brain is addicted to cannabis, it will change structure with new neural pathways and extra receptors developed. If it is found that the hypothalamus of a CHer has a higher number of cannaboid receptors, guess what the development of more of those receptors will do to his CH ? Yes, it will make his CH worse. Martin, I strongly suggest that you follow up on your son's headaches very closely. Ask him, or you yourself, keep a diary of the headaches and of how much cannabis he is using, noting down any changes in the characteristic of his attacks. My bet is that you will find after the first couple of weeks, he will get more attacks ( some would be rebound headaches ), the attacks will be more severe and he will need more and more cannabis to control the situation. In the later date, once the addiction has started, he will get phantom headaches just so he can use more cannabis. This is what happens to people who use opiod pain killers to control the pain of CH. I know that cannabis is used widely as pain control in terminal conditions, but here the major difference is that these people are TERMINAL. They dont have much more than a few months to live, so it does not matter if they develop an addiction to anything, they are dying anyway. An episodic 28 years old should not be treated as terminal. Now if we compare it to the other also illegal substances used for CH like seeds or shrooms .... They are different because they are used as PREVENTER not as ABORTIVE. From what I understand, you use seeds or shrooms to break the whole cycle and/or to block all attacks, you dont use it each and every time you get a headache. I am sure if one uses shrooms or seeds purely as a abortive, ie several times a day for days on end, one will end up with a much worse problem than CH to start with. I would rather recommend your son try oxygen as abortive, its safe, its effective, cheaper, not illegal and most definitely non addictive. Oxygen does not alter the structure of the brain, cannabis does. Painfree wishes to your son.

 You as a highly respected physician should know that cannabis is not addictive.  

             Kinder gentler Potter

Potter, I appreciate your kind commend and personally I have never used cannabis so I dont know how addictive it would be to me.

From what I have read, learnt, observed, talked to people from all walks of life who use cannabis, however, is that yes it is definitely addictive. It is not as bad as say cocaine or crack or ice, but it is addictive.

Cannabis is considered the softer drug, the less harmful drug. Many people starting out with cannabis tend to move from it to harder core drugs. Once they have tried the likes of cocaine or meth, they look back at cannabis and see it as nothing. Those who stay with cannabis though, do experience withdrawal and craving, which are symptoms of addiction.

I am sure the degree of addictiveness varies in different individual and from what you have posted through the years here I believe that personally you have found it not as addictive as other substances, ie you could stop it more easily than others but that would be your personal experience only.

The concensus out there would be that yes cannabis is addictive.

wrote on Mar 18^th, 2009 at 5:57pm:

Potter, I appreciate your kind commend and personally I have never used cannabis so I dont know how addictive it would be to me. From what I have read, learnt, observed, talked to people from all walks of life who use cannabis, however, is that yes it is definitely addictive. It is not as bad as say cocaine or crack or ice, but it is addictive. Cannabis is considered the softer drug, the less harmful drug. Many people starting out with cannabis tend to move from it to harder core drugs. Once they have tried the likes of cocaine or meth, they look back at cannabis and see it as nothing. Those who stay with cannabis though, do experience withdrawal and craving, which are symptoms of addiction. I am sure the degree of addictiveness varies in different individual and from what you have posted through the years here I believe that personally you have found it not as addictive as other substances, ie you could stop it more easily than others but that would be your personal experience only. The concensus out there would be that yes cannabis is addictive.

You should be quiet now.

     Potter

Potter wrote on Mar 18^th, 2009 at 5:59pm:

You should be quiet now.      Potter

Indeed, I have said what I wanted to say in this thread, I will be quiet now  :)

We see this as an interim solution for immediate relief and nothing else while we seek less evasive and potentially less threatening solutions. He has begun Magnesium and Melatonin treatments as well. He did not respond to O2.

One thing to consider is the amount we are talking about here. 1/4th a cigarette aka a few puffs not ever a full cigarette has been needed.  Add to that, the absorbing rate of smoking pot is 15% through a cigarette. You can do the math but we're not talking about a great deal into the blood stream.

I really don't believe it's killing the pain as such. That small amount of weed is not enough to kill the intense pain of these things. I know when I had these, it took something like Demerol at the hospital to kill just the pain and even then it did not relieve the pressure for me. Something else must be happening. What exactly that is we do not know.

One advantage of the tinctures are the flash (vaporizing) points of certain cannibinods. You can literally cook out most of the THC and still have the benefits of the other cannibnoids. In this case you can take it in small doses and never feel stoned as such. That's exactly what I did, I cooked out the part that get's you high. The effects at most is a relaxed sensation, similar to 1/2 of a 5mg Valium depending on how many drops you take.

It must be attaching to some receptors or nerve agents or perhaps the part of the brain that controls dilation or contraction. One thing seems clear, it has worked repeatedly for him as a near instant abort.

What we are testing now is the longevity. He usually has a headache before 7:00 am. Usually it is before 3:00 but the added Melatonin seems to have adjusted his clock so the headaches are coming later. That's interesting enough on it's own.

He had a CH coming on earlier today and took a few drops of the tincture, which aborted the headache. His report in the morning may shed some light on the longevity of this treatment.

I'll report back if there is any interest. Otherwise, all I can say is YMMV.

Martin,

I think that you have found, and will continue to see some resistance simply because it's been tried by so many people so many time for so many years, that we become skeptical. I'm not saying that it doesn't work for your son, it's just so far from the norm for Clusterheads.

Imagine for a moment if I logged in here and said that I discovered that drinking lots and lots of Scotch was my abortive. I realize it's not the same thing, but the analogy is for illustrative purposes.

As a 12 chronic sufferer, I most certainly understand the dire need to abort the pain.

Respectfully,

Marc

Hey Marc,

I'm not trying to sell anything to anyone, just reporting.

I did find something new just now.
The way it works on pain is there is specific nerves that deal with pain. They are called vanilloid-Receptors. Anandamide(sanscript word for "Blissful Amide"), the bodies internally produced marijuana binds with the nerve endings, reducing pain. Anandamides are produced internally by our bodies in response to a whole variety of conditions. As an example, Aspirin prevents the breakdown of Anandamide, the internally produced marijuana to activate & start working at easing pain.

This was pulled from an article I found here. It was part of #12.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I repeat, I don't know why it works.

Martin, I appreciate your sharing your son's experience with MJ and CH.

May I make a suggestion that can lead to the common good of all please : Would your son start and keep a detailed diary of his headaches and his experience using this formula of MJ as abortive, send it to the neurologists from the Albert Einstein College of Medicine in New York, who reported the first single case of similar finding ?

I am sure they would be more than interested in following up your son's case and maybe able to work out how and if this method really works.  

Just some references to cannabis known also as marijuana:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Dronabinol, is the main psychoactive substance found in the Cannabis:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

info about Medical Cannabis:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I could not find (for now) any reference to a study or documentation about CH and Cannabis, other then the observation made in The Montefiore Headache Center, Saul R. Korey Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, USA.
"Cluster attacks responsive to recreational cannabis and dronabinol," Headache journal, Feb. 2009.

I am looking via my neurologist and the pain clinic in St. Gallen Switzerland if they are aware of any publication or study, explicitly in relation to CH

I will be grateful if Bob Wald will add some info, if he has any, I think he is the most competent person (that I know) that could shade some light into this subject

Michael

I'm now speaking directly through email with a doctor in CO who is an advocate for MMJ therapy. He is giving me a direct referral to speak with Dr Robert Melamede. More details about Dr. Melamede findings can be read here.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Look at #30. This may be a partial key to what is happening.
"Cannabinoids modulate pain peripherally. In our bodies there are special kinds of pain receptors, known as Vanaloid receptors & they are sensitive to things like heat & excessive pressure & they are responsible for pain. It turns out that a natural regulator of that that down-regulates pain. The endocannabinoid known as Anandamide, the blissful amide, when you combine Sanskrit for ananda & amide for the chemical type. It's clearly known that cannabis can regulate pain, that's been done in numerous studies, but recently , as we learn more about the molecular mechanisms of pain & cannabinoid action what we have now learned is that there is a lot of crosstalk between the cannabinoid system & the morphine, the opioid system. The name of an article that just came out is called Chronic morphine modulates the contents of the endocannabinoid tuorachidonalglycerol in the rat brain."

I found something on the referenced article here.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

One thing I keep reading over and over is that there is one particular Cannabinoid that is responsible for pain relief. I will ask the doctor which one. I seem to recall the highest amount of this one Cannabinoid is produced in Hemp, not Pot, but will try and clarify.

Having been a pot-head 10+ years ago and having had chronic clusters at the time, I can say that FOR ME pot smoking was a trigger not a cure.  I denied it for a while, but soon I couldn't even deny it any longer.  Get high, an hour later, have a CH 90% of the time.  About the same as having a drink.

Good luck to you and your sons,

Ray

Here are the vaporizing points: If the theory holds true, heating the pot to over 314* should eliminate the THC while leaving the others.  This would mean you get the good "noids" without the THC high.

Phytocannabinoids, their boiling points, and properties

Δ-9-tetrahydrocannabinol (THC)
Boiling point: 157*C / 314.6 degree Fahrenheit
Properties: Euphoriant, Analgesic, Antiinflammatory, Antioxidant, Antiemetic

cannabidiol (CBD)
Boiling point: 160-180*C / 320-356 degree Fahrenheit
Properties: Anxiolytic, Analgesic, Antipsychotic, Antiinflammatory, Antioxidant, Antispasmodic

Cannabinol (CBN)
Boiling point: 185*C / 365 degree Fahrenheit
Properties: Oxidation, breakdown, product, Sedative, Antibiotic

cannabichromene (CBC)
Boiling point: 220*C / 428 degree Fahrenheit
Properties: Antiinflammatory, Antibiotic, Antifungal

cannabigerol (CBG)
Boiling point: MP52
Properties: Antiinflammatory, Antibiotic, Antifungal

Δ-8-tetrahydrocannabinol (Δ-8-THC)
Boiling point: 175-178*C / 347-352.4 degree Fahrenheit
Properties: Resembles Δ-9-THC, Less psychoactive, More stable Antiemetic

tetrahydrocannabivarin (THCV)
Boiling point: < 220*C / <428 degree Fahrenheit
Properties: Analgesic, Euphoriant

I have also read that companies are producing new strains of marijuana for isolation and increased potency of the above listed Cannabinoids to treat specific types of afflictions.

Just got a report from my son. He took his tincture at 2:30 pm yesterday which aborted the attack. He reports he did not have a headache this morning. His pattern is one headache early AM and one mid afternoon. He will call me once he has another attack but this could indicate some residual relief.

Wouldn't be my first, second or tenth choice as a therapy, but many people need to try 11 or 12 things to find decent relief.  The conventional wisdom is that this treatment does nothing or makes things worse (and I think that is generally correct) but we are starting to see evidence that a small minority may indeed have clear benefits.

One research note that bears mentioning: another plant that hits the anandamide receptors is echinacea (coneflower). It hits a different subset (CB2 instead of CB1, as marijuana does).  It is the alkamide component of echinacea that does this - if you use a tincture, the alkamides will cause a prickly feeling in the mouth, so it is possible to gauge the activity of a preparation.  Whether it as an effective substitute for grass or not, I don't know.

In Ayurveda, echinacea is tamasic, which roughly means heavy, dulling - the same is obviously true of marijuana.  Another tamasic plant that a few have reported useful is hops. Hops is in the cannabis family. Hops has been shown to hit the melatonin receptors, no word on the cannabis receptors (I think it probably does - I don't drink beer much because it zombifies me in a way other alcohol does not, and I am sensitive to CB disruption).


MartinL wrote on Mar 18^th, 2009 at 9:47pm:

...  Anandamide(sanscript word for "Blissful Amide") ...

LOL - a minor typo that anyone could make, but very funny. "Sanscript" could mean "without letters" or unwritten.  The unwritten word for bliss is very powerful - it was featured prominently in Buddha's Flower Sermon. Back to our regularly scheduled programming.

Smoking and glycerin Tincture appear to have the exact same relief result.

I have an email now into Dr. Melamede asking him to speak directly to my CH results. I'll post back his comments.

What I can't qualify now is if the effects of this morning were due to the Magnesium/Melatonin treatments. It may be those offering the residual effects not the tincture. I have more questions than answers.
He is taking 400ng of magnesium and 5 mg of Melatonin once daily.

On a side note, I have somewhat of a biological clock disorder. This has been linked to CH. Melatonin is used to regulate the clock, so we started that therapy a few days ago. Low magnesium levels have also been witnessed in CH sufferers, so I have taken measures to increase those levels as well.

I also agree, smoking Pot was not my first choice of abortive either. But if it works for now, then it makes sense to look at it closer while other alternatives are sought.

The only thing I can say with any certainty is that he is pain free as of this morning.

It's interesting and worth a discussion. My son reports if he drinks 2 beers, he's guaranteed a CH. If he drinks 6 beers no headache. Just another mystery to add to all this.

MartinL wrote on Mar 19^th, 2009 at 9:56am:

Smoking and glycerin Tincture appear to have the exact same relief result. I have an email now into Dr. Melamede asking him to speak directly to my CH results. I'll post back his comments. What I can't qualify now is if the effects of this morning were due to the Magnesium/Melatonin treatments. It may be those offering the residual effects not the tincture. I have more questions than answers. He is taking 400ng of magnesium and 5 mg of Melatonin once daily. On a side note, I have somewhat of a biological clock disorder. This has been linked to CH. Melatonin is used to regulate the clock, so we started that therapy a few days ago. Low magnesium levels have also been witnessed in CH sufferers, so I have taken measures to increase those levels as well. I also agree, smoking Pot was not my first choice of abortive either. But if it works for now, then it makes sense to look at it closer while other alternatives are sought. The only thing I can say with any certainty is that he is pain free as of this morning. It's interesting and worth a discussion. My son reports if he drinks 2 beers, he's guaranteed a CH. If he drinks 6 beers no headache. Just another mystery to add to all this.

Be pretty dumb to just have two beers then.  How bout if he drinks a twelve pack?

      Kinder gentler Potter

I gotta say Martin, compared to most others who have come through here like a streaking comet, preaching "pot cures" then disappearing, you are a man who has clearly researched this.

As I say to anyone who has found something that works, you're an idiot if you stop because "someone else" tells you it doesn't work. Do keep us posted on the research.

Joe

Martin,

At the risk of being repetitive, your son does not sound like a typical Cluster Headache sufferer - two beers is bad, but a six pack is OK?

Seriously, I would have him reevaluated by a competent neurologist to rule out other potential problems which in fact could be dangerous.

Best of luck

Marc

I've heard others say that alcohol triggers, but staying drunk prevents. Not really practical advice unless one wants to be an alcoholic. But the effects of alcohol may change - depletion of nitric oxide or other effects may kick in with heavy doses or continual usage. Moderate alcohol increases nitric oxide and lowers blood pressure; chronic use of alcohol seems to deplete it and raise blood pressure (among other things).

I'll let you guys continue to hash out:

- Smoking pot to abort CH's
- Consuming large quantities of alcohol to avoid being hit

Not my approach......I'll stick with O2 thank you.

thanks for sharing your experience, sadly when I tried cannabis in desperation one evening it made things a whole lot worse, oddly though I have found that smoking a regular cigaratte has worked (although certainly not every time), I gave up smoking 6 months ago and have no intention of starting up again. I decided on balance its not worth it (strong coffee works better for the 'lesser' hits)

I'm not saying that drinking alcohol is a good treatment - merely that there have been others here have reported that continuous drinking can suppress hits. I rarely drink (never in cycle) and I don't use pot. I also made it clear that most people don't see improvement from THC, while many get worse.  

The fact that someone has an atypical pattern of clusters, or responds very differently from most of us is bound to raise suspicions of misdiagnosis etc.  We need to recognize that this is not the norm.  But I think we should listen.


Consider the comments of Ave, who had 650+ posts when she wrote this:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Yup, I actually remember the post. And Yup, I'm chronic and I've done the same thing as Ave.

My concern has more to do with the massive influx of new folks, many of whom are desperate and seize upon seemingly easy answers. I've seen the depth of your research for years, so I understand your analytical approach to this, but most folks won't expend the effort to realize that they are not atypical.

Marc

Sorry, but these two just don't jive in my head:


MartinL wrote on Mar 18^th, 2009 at 4:51pm:

I'm not scientist, I'm just a Dad.

MartinL wrote on Mar 19^th, 2009 at 9:03am:

Here are the vaporizing points: If the theory holds true, heating the pot to over 314* should eliminate the THC while leaving the others.  This would mean you get the good "noids" without the THC high. Phytocannabinoids, their boiling points, and properties Δ-9-tetrahydrocannabinol (THC) Boiling point: 157*C / 314.6 degree Fahrenheit Properties: Euphoriant, Analgesic, Antiinflammatory, Antioxidant, Antiemetic cannabidiol (CBD) Boiling point: 160-180*C / 320-356 degree Fahrenheit Properties: Anxiolytic, Analgesic, Antipsychotic, Antiinflammatory, Antioxidant, Antispasmodic Cannabinol (CBN) Boiling point: 185*C / 365 degree Fahrenheit Properties: Oxidation, breakdown, product, Sedative, Antibiotic cannabichromene (CBC) Boiling point: 220*C / 428 degree Fahrenheit Properties: Antiinflammatory, Antibiotic, Antifungal cannabigerol (CBG) Boiling point: MP52 Properties: Antiinflammatory, Antibiotic, Antifungal Δ-8-tetrahydrocannabinol (Δ-8-THC) Boiling point: 175-178*C / 347-352.4 degree Fahrenheit Properties: Resembles Δ-9-THC, Less psychoactive, More stable Antiemetic tetrahydrocannabivarin (THCV) Boiling point: < 220*C / <428 degree Fahrenheit Properties: Analgesic, Euphoriant I have also read that companies are producing new strains of marijuana for isolation and increased potency of the above listed Cannabinoids to treat specific types of afflictions. Just got a report from my son. He took his tincture at 2:30 pm yesterday which aborted the attack. He reports he did not have a headache this morning. His pattern is one headache early AM and one mid afternoon. He will call me once he has another attack but this could indicate some residual relief.

They didn't jive in my head either. I need to understand what's actually going on as much as possible. What's safe, what's effective if any. If that means I have to learn something new, I'll do that.

My son has a problem I'm trying to fix it but if he is self dosing, I need to understand as much as I can, so I put in my time to try and source good material on the subject. I have not and won't ever claim to be anything other than just an average father.

If my son tells me it works, I don't even need to know why or how. What I do need to know is how safe this is and how can I make his discovery the most effective with the minimal side effects.

The chart you referred to are the vaporizing points of the "noids" inside pot. If I can heat it to temps that destroy the THC, he will have the others to benefit him without the side effects of feeling high. I didn't make those numbers but found from a reputable source. That's useful information in my mind.

My next question was how can he dose in a non-obtrusive manner. A few drops under the tongue was the answer, but then it was a matter of delivery and absorption rate. Smoking is said to be fastest, tinctures are second and glycerin tinctures provide a higher absorption rate than alcohol based tinctures. It doesn't take a scientist to point to the best solution. All it takes is someone to look hard with an open mind.

There was much more to all this than just that but I'll spare everyone.

I can report he did have another headache today after 11:00. So apparently there was little or no residual effect from yesterdays dosages. It is interesting that the headaches are coming later. He has not had an afternoon headache as of the time of this post.

One headache a day?

    Kinder gentler Potter

He averages 2 headaches a day.

I received an email back from Dr. Melamede. Here is his response to my question as to why my son is seeing some relief from tinctures and CH. I also asked about Hemp as a substitute.

Marijuana works because in mimics marijuana-chemical that we all produce that literally regulate everything in your body. I have met many people with migraines for whom cannabis is effective. THC is responsible for much of the pain relieving properties of marijuana through its actions on the CB1 and CB2 receptors. So hemp should not be directly effective for pain as modulated by these receptors. On the other hand, non psychoactive CBD is an anti inflammatory and additionally does interact with other pain-related glycine receptors. A lot of what is going on with cannabis and migraines may actually be do to cannabis addressing biochemical imbalances that are responsible for the pain. Your son may actually have an endocannabinoid deficiency. If it were me I would also supplement my diet with hemp or fish oil so that I am sure to get enough essential fatty acids to may endocannabinoids. I attached a relevant paper.

drbob
(The paper he sent to me is on the web here.)

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Martin,

One point I would like to clarify is that on one post you said MJ did not work as a pain killer, that it worked in some other presently unknown ways as an abortive, yet all the information you quoted including the email from Dr Melamede is about pain control mechanism of MJ.

So which is it ? Abortive or pain control ?

If indeed your son has an endocannabinoid deficiency leading to extra sensitive CB1/CB2 receptors, then taking Omega 3 would be just as effective and less dangerous than MJ.

I also notice that your son is taking Melatonin and Magnesium. Its going to be difficult to tell if the relief is not due to those two working.

Lastly, did your son keep a headache diary for the previous cycles? Could he be coming to the end of the cycle anyway?

I am not playing the devil advocate here, but since CH can be affected by so many different things, its important to rule out other factors to be able to get a clear picture. I understand the drive to find and believe in a magic bullet and often hope clouds our judgement.

Have you written to the neurologists at the Albert Einstein College ? They would be in a better position to share how they thought it would work and in what cases ?

One more thing your son may consider doing which would be really helpful is to videotape himself taking a hit, how he doses with this tincture and how the hit is aborted. Similar videos had been made demonstrating how high flow oxygen works and that was found to be hugely helpful to many people.

Thanks again for sharing.

Interesting paper.

Using fish oil as a precursor is also an interesting possibility.

The paper mentioned inhibiting an enzyme called fatty acid amide hydrolase (FAAH) - this enzyme breaks down anandamide in the body, and inhibiting it should elevate anandamide.

A quick search shows a few things that can inhibit FAAH:

Kaempferol
7-hydroxyflavone
3,7-dihydroxyflavone

Genistein and daidzein...  Kudzu contains these 2 molecules (as does soy), in addition to another compound of interest that may or may not work in this way (puerarin).  

In the body, anandamide is synthesized from phospatidylcholine.

Research has shown that clusterheads have a deficiency of choline (and I would presume phosphatidyl choline).  A rich dietary source of phosphatidylcholine? Soy.

Although I am tempted to classify cluster headaches as a form of tofu-deficiency, I will not. (Yet.)

Acetominophen is also a FAAH inhibitor.  Oh well.

I'm out for the weekend, so I'll let you all put these pieces together.  

I'm going to stop taking kudzu and melatonin, and after a night of pain to verify my in-cycleness, I'm going to dig up my bottle of choline and take a stiff dose for a few days.  I love science.



Quote:

Br Med J (Clin Res Ed). 1984 Jan 28;288(6413):268-70.    Erythrocyte choline concentrations and cluster headache.    Erythrocyte choline concentrations were measured in patients with cluster headache and age related control subjects. Concentrations were significantly reduced in the patients with headache both during a cluster period and between clusters, being 58% and 55% of the control value, respectively. After two weeks' treatment with lithium, choline concentrations in the patients with cluster headache increased to 78 times the control value (mean 369.2 mumol/l (3840 micrograms/100 ml) compared with 4.7 mumol/l (49 micrograms/100 ml]. The presence of depressed erythrocyte choline concentrations during and between cluster attacks indicates that this may be a predisposing condition which results in a cluster attack only when associated with a trigger factor.

The reason I didn't think it was just pain killer is because he reported no pressure behind the eye. His are identical to mine in location and symptoms, top right of the head. Another point, I believed I had vaporized the THC when I made the tincture however as Dr. Bob just stated the THC is the prime component in pain therapy.

Obviously, I'm not sure what's going on. When he knows the headache is a certainty, that's when he uses the tinctures and the hit goes away before it escalates. If he never had a headache, he would not ever use the tincture. He does not want pot in his system.

You're right about too many things at once. How will I know what works? I have a bottle of fish oil out now to give him and have been researching Kudzu today as well. I'm trying everything I know to try that's on the natural cure side of the equation.

I have written the Albert Einstein school but have not heard back.

He would never do a video, he's ashamed of doing any drugs. It's as simple as an eyedropper and a few drops under the tongue and hold for 2 minutes. Dosing amounts can be tricky though and someone has to test the dosage. That was me in this case and I diluted the tincture to only allow for a slight relaxed feeling. Once I knew it was only about the same effect of 2mg of Valium, I let my son try it with my tight supervision for two days, once he knew how much to take, I sent him with a very small bottle. One could argue tinctures are safer and less harmful than smoking it but then pot is not good in any amount.

None of this is safe and I only wish they would just go away. That's not happening, so I will continue to seek and fight on. He did have a shadow this morning, took some aspirin then the tincture, he said once again, the tincture did the trick before the aspirin even had time to dissolve. In my mind, using it this way is an abortive.

Quote:

I am sure if one uses shrooms or seeds purely as a abortive, ie several times a day for days on end, one will end up with a much worse problem than CH to start with.

I really can't think of anything in this world that is worse than CH. Maybe because I've always been in good health except for the CH condition. When in a cycle my life belongs to CH and I can't do anything about it.
Martini, I'm almost 60 also and have tried almost everything legal and illegal to abort or prevent CH. Nothing has worked. I even tried smoking PCP at one time. That is supposed to dull even the greatest of pain, but it didn't work. When I was younger I smoked pot and still got CH. I don't believe pot is as addictive as tobacco. If someone wanted to try it.
Your story is a nice thing to hear, that it's working for your son, but for most CH sufferers I really don't think pot is going to help us. If we had more research and tests I would think everybody would give it a try, sort of like Oxygen. Since it doesn't have the full support of the medical community, it's only another possible fastfix remedy.
I hope your son continues to have PF success.
Rod

MartinL wrote on Mar 20^th, 2009 at 6:58pm:

The reason I didn't think it was just pain killer is because he reported no pressure behind the eye. His are identical to mine in location and symptoms, top right of the head. .

Martin

Please correct me if I am wrong, are you saying that your son's headache is on the TOP of the head and NOT behind the eye? Does he get the Horner's syndrome like droopy eyelid, watery eye and constricting pupil ? If he doesnt, there is a good chance he does not have clusterheadaches.

The hallmarks of clusterheadaches as we discuss here is severe pain in the opthalmic branch of the trigeminal nerve, coupled with the autonomic nerve syndromes known as Horner's syndromes. Typical clusterheadaches do not cause pain on the top of the head.

There is a chance that your son may not have clusterheadaches at all, or he might have a very atypical form of it, which would explain why MJ works for him while it does not work for most CHers.

Has your son been diagnosed by a neurologist specialised in CH ?

Rod wrote on Mar 20^th, 2009 at 7:12pm:

I really can't think of anything in this world that is worse than CH. Maybe because I've always been in good health except for the CH condition. When in a cycle my life belongs to CH and I can't do anything about it.

Sadly and hard to believe, but there are a lot of things in this world worse than CH. My late husband had episodic CH and severe depression. It was the depression that killed him, not CH.

The pain of CH is extreme when its there but it does pass. My late husband found that the pain of severe depression never ended.

He like me, has these symptoms but I just called him to clarify. We have been to headache Neurologists.

Pain one side, stuffy nose one side, pressure behind the eye, pain on the left middle of head behind left eye, watery droopy red left eye one side. Blurred vision, sensitive to light and sound. Some sweating. He has cycles 2 times a year.

He had a shadow  this morning, took the tincture and has not had his second shadow yet today. He runs 2 headaches a day when he' s in cycle.

Dr. Bob sent me a new link. A lot of information there including the article from the Einstein school about clusters and MJ.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You know, we can sit here and talk about it not working, but the fact is, it does work for my son and apparently for at least one other person. I would bet this won't be the last time we hear this claim.

When you consider trying LSD, Shrooms, LSA or other more drastic measures you have no clue what effects those might have ultimately. As medical Marijuana is legal in some states and at least de-criminalized in many other, it might be worth a try.

It's not ideal, I agree, but if it means some relief...I'm sure most of us have considered MUCH worse to get out of the pain.

Where does this tincture come from?

              Kinder gentler Potter

MartinL wrote on Mar 20^th, 2009 at 9:30pm:

Pain one side, stuffy nose one side, pressure behind the eye, pain on the left middle of head behind left eye, watery droopy red left eye one side. Blurred vision, sensitive to light and sound. Some sweating. He has cycles 2 times a year.

Thank you very much Martin for clarifying.

So he does have pressure and pain behind the eye. What you described sounded like cluster headache, except for the blurry vision and the sensitivity to light and sound. Some people have reported these symptoms although they are more typical of migraines than clusterheadaches.

May I ask further please, what has your son used this cycle ? Did he start out trying other abortives which did not work? How and why did he decide to try this tincture ? Had he taken Magnesium and Melatonin before ?

It sounds like he is planning on using supplements like melatonin and magnesium and omega 3 as preventives rather than traditional meds ?

Since your son had the shadow and took the tincture he skipped the usual first hit of the day, as well as not getting the 2nd shadow/headache either? This makes it sounds like MJ is also working as a preventive, as well an abortive. That is incredible if it is true.

I hope you dont mind me asking all these questions, I am fascinated by this and am keen to learn as much as I can.

Thank you.

wrote on Mar 20^th, 2009 at 10:00pm:

[quote author=5B7764627F785A160 link=1237381860/53#53 date=1237599059] So This makes it sounds like MJ is working. That is incredible if it is true.

It"s been known to happen now and again.  Lets keep it quiet.

MJ   ;)

Thats all I got back to the regular program.

While there may not be fully scientific studies published about the effectiveness, or lack of effectiveness of canibus as an abortive, this site has given a pretty conclusive indication that it is not a very viable abortive technique.

While some may pooh pooh this as being inconclusive, there is not any other place on this earth where there are more "willing subjects" to experimentation, legal or not, in fighting the beast.  It sometimes amazes me the odd things that have been tried by fellow sufferers.

MANY of our fighting techniques, that we use today, have come directly from this site, and its members.  Maybe the members did not originate the idea, but we, for sure, have been instrumental in passing on the ones that work, and debunking the ones that charlatans try to foist on us.  I am thinking of things like:
- water X 3
- splitting Imitrex auto injections
- VERY high flow oxygen treatment (above 15LPM)
- kudzu
- seeds
- heat or cold applications
- energy drinks
- coffee
- hard exercising
- Dr Wright's circulatory treatment
- meletonin
- mineral supplementation
- and others that I can't think of right now

Not all of the above work for all sufferers, but each of them has shown to work for a significant number of clusterheads.  Each of the above have a FAR better track record than whacky tobacky.  While some of the above methods have been triggers, instead of abortives/preventatives, NONE of them have such a high rate of triggering as marijuana does.

Now, if in fact it does work for your son, it is EXTREMELY rare.



MartinL wrote on Mar 18^th, 2009 at 8:03pm:

We see this as an interim solution for immediate relief and nothing else while we seek less evasive and potentially less threatening solutions. He has begun Magnesium and Melatonin treatments as well. He did not respond to O2.

As far as your comment on oxygen not working for him, can you elaborate on how he used it, and what equipment he used?  Maybe he was not doing it correctly, or not using the right equipment.

I have worked, and continue to work with MANY sufferers in the proper way to use oxygen.  Many were adamant that it did not work for them, and it was very difficult to get them to retry it, using the newer methods.  (I know, because I was one of those stubborn SOB's that was certain that oxygen was worthless for me. --- Now I call it my lifesaver, because I now know how to use it properly and see the great advantages that it provides.)  I, and several others on this site, feel that most of those that say it does not work for them, WOULD get results if they tried the newer methods.  The following seem to be the most common failures to people:
- Wrong/defective application device (mask)
- Improper flow rate
- Not getting on it soon enough, or staying on it long enough

You mentioned looking for a "less evasive and potentially less threatening solution" to aborting his hits.  Oxygen is the answer!  It is legal, safe, inexpensive, virtually no side effects, natural, and extremely effective.  I strongly encourage him to try it again, but using the newer methods.

I, and MANY others, would be more than happy to guide him in the proper methodology!

Good Luck!

Chuck

Yes, it's clusters alright. I had them and mine were very severe. When I reached about the age of 30-35, they just went away for me. I'm nearing 60 now but still remember them well. I don't think any of us, ever forget.

The tincture could be obtained from your doctor if medical MJ is legal in your state. Otherwise, you have to make your own.

The recipe is simple, you can make tinctures of Rosemary, Oregano or any other herb for that matter.

1/2 oz. of Rosemary
8 oz. Food based Glycerin
Crock Pot
Cheesecloth to strain.

Place herb in crock pot on WARM setting. If your crock pot only has low and high that may be too high. You really need the warm setting.

Add Glycerin, cover and cook on the warm setting for 24-36 hours, stirring occasionally, then strain. A french coffee press also works for straining. Discard plant material and bottle the liquid in a dark bottle and refrigerate. That's it.

This method btw, was given to me by an MD. He uses this exact same tincture method for treating his patients with Cannabis.

I'm sure we'll see more studies/claims for headache relief and Cannabis as well as other benefits. So much is still unknown.

I was watching TV last night and on the Science channel they reported that they have now discovered a 5th taste bud. Savory. If they are still discovering things in our own mouths, there is probably much to be learned about cannabis and how it relates to managing pain.

Early indications are and it seems to be a general consensus among science that there are indeed health benefits from Cannabis, and probably more important, this is not coming from x-hippies just looking for a reason to get high.

Once we loose all the Bronze age hangups, learn to control it and administer the doses, maybe someday people will receive some help.
The verdict is still out on clusters, but I do think it's more than coincidental that two people have reported the same findings.

I can't advocate it for everyone, but I can report what I'm seeing. There is clearly an indication that for some, this works, some of the time. I see this as another tool in our quest to stop the pain and nothing more until more research is done.

water X 3 i Tried it - No
- splitting Imitrex auto injections - Not injections buy Orally - N0
- VERY high flow oxygen treatment (above 15LPM)
- kudzu - Not yet
- seeds - Not yet - He's completely opposed to LSD/LSA,Shrooms.
- heat or cold applications - Yes,  hot showers one of his main abortives.
- energy drinks - Yes, he drinks red bulls anyway, does not help. We have also tried high caffeine pills like No-doze. No help on the caffeine.
- hard exercising - He can't even move when in pain. His work is lifting heavy objects. He get's a tremendous amount of exercise.
- Dr Wright's circulatory treatment - No
- meletonin - Yes, 5mg once a day for the last week. Shadows still coming.
- mineral supplementation- Other than magnesium which he has been on for a week no. Fish oil has just been added.


Please point me to some information on how to take O2 effectively for CH. I tried it back in my day with no result and he has tried it as well. Perhaps we were not doing it correctly.

I do monitor his health, his blood pressure is a little high at 198/98 but his O2 blood level always stays around 97-98%.

Oh, let me say this, what he does respond to and just like me is 120mg of pseudoephedrine. The downside is the length of time it takes to get in the blood stream to stop the pain when taken orally.

I discovered this by accident when I had my CH bouts. Once I was properly diagnosed, I was given Sansert. Sansert absolutely worked for me but not on the market anymore in the US.

We have been to a couple of neurologists and they all would not listen to me. I know and we know here exactly what my son has, but instead they would not listen and wanted to do a battery of tests just to determine what I already know. God like attitudes, some of these guys and their best solution was Imatrex if that. I kept telling them, this is NOT a migraine, but they scoffed at me, cause they know everything and I know NOTHING. I usually left shaking mad at their arrogance and an empty wallet along with no relief in sight.

MartinL wrote on Mar 21^st, 2009 at 8:28am:

- splitting Imitrex auto injections - Not injections buy Orally - N0

You are not telling us anything new.  The pills take too long to get into the system.  They don't work for us.  The nasal spray works, but the auto injectors work the quickest.  Have him ask his neuro to give him some of his samples that he should have on hand.

You asked about oxygen information.  There is a tab, on the left side of your screen, oxygen info (or if you don't see the tabs, go here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ) that should answer most of your questions about oxygen.  If you have more, feel free to ask them.

If you want to talk/chat direct, you should down load skype (it is free to download, and free to use) (no spyware attached to it) and get set up with that.  That is where many of us chat or talk directly to each other.

Or, if you want, I can PM you my phone number, and I would be happy to talk to you on the phone.  Or, you can PM me yours, and I can call you.  I have free long distance calling.

Chuck

Thank you Chuck, I will look at this closer now. My Mom has O2 in both portable bottle and a concentrator. She has a couple of different masks so I will look at her regulator on the bottle and see if it can push at least 15LPM. It's certainly worth a try.

MartinL wrote on Mar 21^st, 2009 at 8:28am:

............................ I do monitor his health, his blood pressure is a little high at 198/98

Martin, I read this - and the fact that you have gone to different doctors because they "wouldn't listen to you and wanted to run a bunch of tests."

A little high?!!!! This whole scenario is starting to look really scary to me.

This is crap,  I'm done.

         Kinder gentler Potter

A couple of things.....

Martin, does your son have no desire to get on this site? We would love to talk to him about this in person

You sure must have some pull somewhere to get Physicians from other states to email you back and forth. I never had any luck with that.

Sansert worked for me back in the day as well.

Where are you guys from?

Ok, fine forget I mentioned it. I won't waste anymore time reporting and trying to help others. Do whatever you want and believe whatever you want.

Just to clarify, they wanted to treat it as any other headache, not a cluster which the symptoms and genetics clearly indicate. That was my frustration. They wouldn't even consider what I knew were the facts based on my experience and research and much like this thread has turned out.

Ok, you win, my concept is ridiculous, I had nothing better to do than make up bald face lies and point to incompetent science.

Best of luck to everyone.

* Moderator: Please delete this thread. It has no basis for even the slightest of consideration as plausible in science or user experience as deemed by the "experts" in this forum.

Thanks
~m

Martin,

I am sorry you are feeling like this. We are only concerned for the health of your son.

Blood pressure at 198/98 is extremely high, thats near the stroke range. Your son is at risk of getting a stroke or a heart attack from that blood pressure alone. Is this blood pressure measured during/straight after a hit or is it his normal reading? Normal blood pressure should only be around 120/80, anything above 150/90 should be treated.

Blood oxygen level at 97% is not that good either. Normal level in an otherwise healthy individual should be 99 to 100% at all times. Is your son a cigarette smoker ?

Has your son had MRIs to rule out dangerous things like a brain tumour? Has he had all the necessary blood tests ?

I fully understand your frustration with the neurologists but your son needs to see one who are experienced with headaches, especially clusterheadaches. People on the Board here can help recommending one to you.

I am not rubbishing the concept that MJ may work for CH. I am more concerned about your son's health and the actual cause(s) of his headaches and his hypertension. Many people get misdiagnosed and in some that can be dangerous.

I admire your effort in helping your son and in advocating for him, but you need to let the doctors do their work too. You have personal experience with CH but your son may have other medical conditions that you do not know and can not manage on your own.

I may have made you feel even more angry but sometimes we all need to hear what we need to hear, not what we want to hear.

Painfree wishes and best of luck to you and your son.

I'll chime in here -- while in Jamica I DID abort with pot (the brand there) and it was almost instant, but nothing around here has touched a CH for me.

This was back years ago when nothing was helping me and it was wonderful - one puff and no pain.... but alas, I couldn't get the stuff thru customs, so .... but it did work - don't know why, but it did.

So, keeping an OPEN mind, I wouldn't rule out anything that works for anyone. Right now I'm in love with my O2 tank.

Hugs BD

@Jimi - My son used to be a member here, but when he discussed his abortive here which was Dristan, he was ridiculed. That works too and 100% of the time. He would not come back to this site because of the way people scoffed at him.

I used Dristan before my Sansert. When we got so frustrated with the doctors, he went back to Dristan and that is still his abortive today. People can scoff at that one too. Fine...

Dristan worked for me and and it works for him and 100% of the time. The problem with that is it take 4 tablets per dose and the best Dristan for CH has been taken off the market. It was removed because people were making Speed out of it I am told. There are still Dristan formulas that still work though, and we order them ahead if time to insure he has an ample supply. Pills take 20 minutes or more, pot takes less than 5 minutes. Which one would you choose?

I don't have any pull with doctors, I am just an impassioned parent. When my son discovered a few puffs aborted the CH attack, I contacted Doctors in a state where Medical marijuana was legal. They were receptive to my findings and as I didn't sound like some kid trying to get stoned they were happy to help. One physician sent me a referral to Dr. Bob, who is as I understand it, one of the leading authorities in cannabis pain research so that that I might try to understand the why behind the fact that is does work. I don't need to know IF it works, I know that...but why and more importantly how can I eliminate the other side effects like feeling high?

That journey lead me to thinking of a delivery a delivery method where he didn't smell like pot smoke That's where I learned about Cannabis tinctures and after a few consultation with medical Marijuana doctors I was given the tincture method which I has posted here.

That's how all this started and I continue a dialog with the doctors and Dr. Bob today. I am looking for a solution to alleviate the CH pain without him feeling stoned.

I told my son yesterday about my experience here, he asked me why I was even posting on this forum. His comment mirrors my own thoughts. "I don't care what they say or think,  pot works."

The sad part in all this, is that we all know that people have different experiences in dealing with these god awful headaches, their abortives/preventives etc. and in my mind. NOTHING should be ruled out. People are advocating LSD and other hallucinogenics and yet pot is dismissed as a more harmful solution? I don't get it.

There is NOTHING in it for me to post this here. Why in the world would I just post nonsense when I know first hand the debilitating pain and the life changes these things cause? The only motive I had was try share my experience in order to help others. I am greeted with the skepticism of a snake oil salesman in spite of pointing to scientific articles to facilitate further discussions here. Humm, ok, believe it or not.

I feel reluctant to post back any findings at all, even though I have some new information and developments. I feel sad for users of this forum who might gain some relief. I can't say it works for everyone, because he is not everyone and we all know that some things work and some don't for different sufferers. What I can say is that it works for my son and 100% of the time and continues to work 100% as late as yesterday.

My quest will continue for a safer, less obtrusive and less noxious solution. As I have stated here many times, this was not my first choice of abortive by any stretch of the imagination, but it does work for my son and I support his right to kill that demon inside his head.

People can say what they will, choose to try this or not. I don't sell pot, or sell papers to smoke it, or the glycerin to make tinctures nor am I an advocate for recreational marijuana use nor am I affiliated with any of the above. I'm just a Dad, trying to help my son and perhaps others along the way.

I wish everyone shorter cycles and the best of luck finding your own solutions. I say try it, if it works, great, if not keep trying something else that works for you until a real solution is found that works for EVERYONE 100% of time.

Martin

@Barb - Yep, works here too for my son and like you, we don't know why. A few puffs and wham, the CH is gone.

Your son is the exception, not the rule. That explains all the scoffing.

Martin,

I understand your frustration. Please note that my last comment was specifically aimed at your son's dangerously high blood pressure - NOT the pot issue. You need to find out what is causing the high BP at such a young age.

Good luck

Marc

Pseudoephedrine in Dristan is a vaso-constrictor

Sansert was also a vaso-constrictor

Pseudoephedrine raises blood pressure.

I suggest you do some research before you speak, else you won't sound very educated on the subject matter to those who have done so.

MartinL wrote on Mar 22^nd, 2009 at 10:56am:

Pseudoephedrine in Dristan is a vaso-constrictor Sansert was also a vaso-constrictor Pseudoephedrine raises blood pressure. I suggest you do some research before you speak, else you won't sound very educated on the subject matter to those who have done so.

Then your posts make you sound plum ignorant.Let this worthless thread die fer crissakes.


    Kinder gentler Potter
             

Martin,

You weren't clear in the information presented. I suspect that you are now indicating that his high BP is being caused by the Pseudoephedrine.  I was simply concerned.

In any case, I will bow out as I can offer nothing constructive to this thread.

Marc

Me too, Marc. Everything is perceived as a burr under the saddle.

Potter wrote on Mar 22^nd, 2009 at 11:14am:

MartinL wrote on Mar 22nd, 2009 at 10:56am: Pseudoephedrine in Dristan is a vaso-constrictor Sansert was also a vaso-constrictor Pseudoephedrine raises blood pressure. I suggest you do some research before you speak, else you won't sound very educated on the subject matter to those who have done so. Then your posts make you sound plum ignorant.Let this worthless thread die fer crissakes.     Kinder gentler Potter

Hey Jethro?

Clearly, user experiences, and data in this thread has offered no benefit to you and yet you feel compelled to read it and still post? Perhaps this link would be of some assistance for you.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Look, I don't give a %!@ what you think, what you take, you can believe in injecting draino into your jugular vein or the Tooth Fairy will deliver you from CH evil for all I care. Get it?

Explain to me Hillbilly, in your oh so eloquent way and only if you can string an intelligent thought together what gives you the &%#$ right to say what works for my son and does not?

Is this a magnification of your delusions of grandeur to be so Pios, or is it simply your innate desire to display so outwardly your malefaction? As an outside observer I can say, and of course strictly from a personal perspective, neither is very attractive or a value add to this thread.

Darn, I'm in a good mood today, I'm "plumm" filled with mercy and speak without malice today. What does plumm mean anyway?

If you really want to take me on, let's save it when I've had a full day of your stupidity. I have a fairly short fuse for the short sighted, and also the closed minded and particularly those that believe their reality is everyone elses. Add to that your inability to comprehend that the "other" persons reality could not possibly be any other reality than the way YOU perceives it adds a volatile combination within my proximity.

My best advise for you and in the most simplistic of terms should your brain stem me loosely attached and you suffer unconsciousness at the mere thought of intelligence, is not to read this thread.

"Plumb dunt reed dis no-mo".
--
God I'm in a great mood today! I think my son and I will take the dogs to the dog park and forget for a little while that the devil lurks within him. After that, go visit my Mom and check out her O2 bottle.
I've been reading  up and it may be yet another tool if done correctly.

I hope everyone has a great day.
~m

This thread is locked pending Administrators review.