wrote on Mar 30^th, 2009 at 11:30am:

I was sick all day with the aftermath. Had the shakes and still had some of the aurora lingering.

Maybe that one was not a cluster headache!  Those symptoms that you list above, are NOT cluster headache symptoms.

ALSO, you said that episode happened the other day, and your title says that you have stopped your cycle.  Well, a day or two does NOT signify that a cycle has stopped.  You need a MUCH longer period!  Sometimes, in cluster headaches, you get one "rogue" hit, that is not in any cycle.  Sometimes, when a cycle is starting up, you will get sporadic hits, sometimes days apart.

Whatever the cause, I am glad that you have gotten relief from what you have.  It is an interesting set of ingredients.  I will have to try it, and see what happens.  It can't hurt me!  Thanks for the suggestion!

Good luck!

Chuck

Migraines maybe ?

Kinder gentler Potter

You know where we might purchase this remedy?

            Kinder gentler Potter

Oxygen made the ch worse?  What method of delivery do you use?

        Kinder gentler Potter

wrote on Mar 30^th, 2009 at 12:39pm:

Oxygen did not help me at all. IMITREX made my clusters more active came more often faster and longer. I refused to take the verapimil that the neuro wanted to prescribe. Ended up using the cayenne pepper taking it in doses of 1 teaspoon at the onset of a cluster chasing that with high dose of caffiene. Until I used the remedy above.

But how did you administer the oxygen?

       Kinder gentler potter

wrote on Mar 30^th, 2009 at 1:44pm:

I cannot remember what the level of oxygen was back then that was in my early 20's. All I remember is that I had the perscription for the Oxygen at my home to use at the onset of the cluster and it did nothing for me. It was a short duration of trying that treatment. You should study the effects of Krill oil or fish oil as they are similar and the effects of the brain. Here is one of the studies they did on Seritonin and depressed individuals and what the EPA in fish oil does in the brain. This is one of the reports that lead me to trying the Krill Oil. Even though I do not seem to be depressed, CH sufferers seem to have a probelm with having low seritonin levels too. Inflamation is regulated by the fats we eat, Krill oil causes a reduction in AA (Arachidonic Acid Omega 6 fatty acid that causes inflamation)levels. EPA helps us make seritonin maybe this is why it helped stop my cylce. Mine are not chronic everyday like some others mine come at certain times and are triggered by something and then something has to trigger them to stop. I know they are not migraines. I cannot sit still and bang my head pace and run until the cluster ends. You know it is worth a try to see if it will help you none of those things I listed are going to hurt you they are all good for you. I forgot to mention I took the Spirulina during the day in larger doses for the GLA fat. This is the good Omega 6 fat that we used to get in animal fat when the animals were fed the right ration of fat like grain. If you want the GLA then look into Prim rose oil, borage oil, or black current seed oil. Or get it in the Spirulina

You forgot how the oxygen was administered?  before I pushed a bunch of supplements I think I would give the oxygen a whack in the correct manner.  Read.

                Kinder gentler Potter

So why did she delete all of her posts?

:-/

Mrs Deej wrote on Mar 30^th, 2009 at 1:58pm:

So why did she delete all of her posts? :-/

Cuz five were reposts of the same umm stuff.  my guess would bethat it's possible she was a poser

       Kinder gentler potter

Mrs Deej wrote on Mar 30^th, 2009 at 1:58pm:

So why did she delete all of her posts? :-/

If I had to guess, I think she was feeling as if though she and her ideas were being attacked, so, she left and took her ideas with her.  It seems to happen like this every now and again to people who come here thinking outside of the box.  I kind of admire her for taking what was received as unwanted with.  Too bad she felt run off though...

wrote on Mar 31^st, 2009 at 2:29pm:

Mrs Deej wrote on Mar 30th, 2009 at 1:58pm: So why did she delete all of her posts? :-/ If I had to guess, I think she was feeling as if though she and her ideas were being attacked, so, she left and took her ideas with her.  It seems to happen like this every now and again to people who come here thinking outside of the box.  I kind of admire her for taking what was received as unwanted with.  Too bad she felt run off though...

Yeah real bummer.

     Kinder gentler Potter

Actually, I was very sorry to see her delete her posts.  Although I felt she was describing something that did not sound like cluster headaches, I thought her set of ingredients were very interesting, and I wanted to try them.  

I am pissed at myself for not writing them down.

Now, I guess I will never know what they were.  DAMN!

Chuck

Ok so I am still here under a different name, Potter already new that because he tracked my IP address to make sure he new it was me. I did not liked being badgered through the private message. I chose to delete my entries because I believed that no one was open to a new possible idea. I have lived with the CH for over 20 years. Mine are not chronic as some. They usually occur once a year in a cluster of so many weeks, they come at a certain time a day in timed intervals. Mine occur when I am sleeping usually close to the time I enter REM. I have never joined any groups I have been able to manage with Cayenne pepper and high doses of caffiene up until last year when I ended up trying prednizone to stop the cycle. That only me made me real mean and sick. When the cycle started up this year I tried based on some facts to stop the cycle by greatly increasing the seritonin levels before sleep. So far it is working. I was just way to excited to share in posting this info to others. I apologise for thinking out side of the box. Oxygen never helped me and honestly I do not want to live the rest of my life running to an oxygen tank to make it through. I have six children and I would prefer living my life. If anybody is interested in what I have done I will be glad to share it with you. It may not help all but it could really help some. That was my point of posting in this forum. Just as Oxygen does not work for all!
Now I come in Peace, so I hope that I can stay with the forum and not be badgered, I promise to keep the peace.

Cassandra

Cassie/Phoebe

I re-read what everyone said and I don't see anyone badgering you...just asking legitimate questions.  "How are you using the 02?"  that sort of thing.   We do that all the time here in an effort to help.  When you said you were sick all day in the after-math, had an aura, etc....Migraines were the first thing I thought also.  Clusters don't have an aura...Migraines do.  

Over the years we have had people come in here with all SORTS of cures...a lot of them are snake-oil salesmen trying to insist that this vitamin or that tincture has made them PF.  Since there is no cure for CH at this time,  we are skeptical and ask questions, that's all.  A lot of us are adament about trying 02 the proper way because it has worked so well in aborting.

Stick around, o.k.?   ;)

He sent them through the Private Message I as I stated earlier
I am not selling snake oil. Just simply a remedy that helped.

cassie wrote on Mar 31^st, 2009 at 3:42pm:

Ok so I am still here under a different name, Potter already new that because he tracked my IP address to make sure he new it was me. I did not liked being badgered through the private message. I chose to delete my entries because I believed that no one was open to a new possible idea. I have lived with the CH for over 20 years. Mine are not chronic as some. They usually occur once a year in a cluster of so many weeks, they come at a certain time a day in timed intervals. Mine occur when I am sleeping usually close to the time I enter REM. I have never joined any groups I have been able to manage with Cayenne pepper and high doses of caffiene up until last year when I ended up trying prednizone to stop the cycle. That only me made me real mean and sick. When the cycle started up this year I tried based on some facts to stop the cycle by greatly increasing the seritonin levels before sleep. So far it is working. I was just way to excited to share in posting this info to others. I apologise for thinking out side of the box. Oxygen never helped me and honestly I do not want to live the rest of my life running to an oxygen tank to make it through. I have six children and I would prefer living my life. If anybody is interested in what I have done I will be glad to share it with you. It may not help all but it could really help some. That was my point of posting in this forum. Just as Oxygen does not work for all! Now I come in Peace, so I hope that I can stay with the forum and not be badgered, I promise to keep the peace. Cassandra

You weren't badgered at all,  you were advised to read all you could and use oxygen as an abortive.  No bullshit.

      Kinder gentler Potter

Ok Whatever. You made your point. I will say it again when I used the oxygen back then it did not work for me. Your moderator did send me a message stating that it has changed since I tried it 20 years ago. So that was new info for me and I am open to that. I'm going to ask you again now in public to leave me be. You are the one contacting me through private messaging tracking my IP. I am not interested in your grouchy opinion.

ClusterChuck wrote on Mar 31^st, 2009 at 2:50pm:

Actually, I was very sorry to see her delete her posts.  Although I felt she was describing something that did not sound like cluster headaches, I thought her set of ingredients were very interesting, and I wanted to try them.   I am pissed at myself for not writing them down. Now, I guess I will never know what they were.  DAMN! Chuck

Here you go Big Boy...! :-*

Tell us how you get on...! I to found them a very interesting mix...!

I took right before bed:

2 capsuls of Krill Oil(500mg a piece)
about 8 ounces of kefir
1 teaspoon of manesium
and 1 handful of cashews

The Krill Oil right away started working on the inflammation and that evenging I did not wake up with and have not had a ch since.

I repeated the next morning with Kefir and took the krill oil then I took Sprirulina for the GLA.

Krill Oil raises seritonin and lowers insulin, kefir contains a lot of tryptophan used to make seritonin.

People who have ch are low on magnesium, so I added the magnesium

the Cashews were for added protien to help stabalize sugar during the evening.

It may sound silly but it did work I think there is a matabolic imbalance you have to figure it out.


Lefty...!

Got to admit with the increasing number of preventative drugs that I seem to react to or do absolutely nothing for the headaches I am seriously getting to the point of *shudders* looking at brain food.

Does anyone know what is in krill oil that helps so I can try and figure out what might be the veggie alternative.

Katie wrote on Apr 1^st, 2009 at 3:26pm:

Got to admit with the increasing number of preventative drugs that I seem to react to or do absolutely nothing for the headaches I am seriously getting to the point of *shudders* looking at brain food. Does anyone know what is in krill oil that helps so I can try and figure out what might be the veggie alternative.

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

Best doing your own research because this could be a site just trying to sell Its own product but it should tell you what krill oil is all about.

Lefty....

I've never heard of krill oil but it looks like it may have some benefit, especially because it crosses the blood brain barrier.  However, these are the cautions I found from: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Possible Drug Interactions
People taking blood thinners (anticoagulant or anti-platelet medication), such as aspirin, warfarin (Coumadin), heparin, clopidogrel (Plavix), non-steroidal anti-inflammatory medications (NSAIDS) such as ibuprofen (Motrin, Advil), naproxen (Naprosyn, Aleve) should only use krill oil under a physician's supervision.

Krill oil should also be used with caution by people taking herbs and supplements that are thought to increase the risk of bleeding, such as ginkgo biloba and garlic.

I agree with the others.  If you have an aura, it can't be a CH.  Have you had MRI or CAT scan?  Did you take the cluster quiz on the main page?  O2 usually works for CH.

Krill must be something terribly healthy.

The START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE reaches, on a diet of krill, a length of 33 meters and a mass of 170 tons, what makes it the largest living animal.

But for my liking krill tastes a bit too fishy.


                 [smiley=smokin.gif]

Katie wrote on Apr 1^st, 2009 at 3:26pm:

Got to admit with the increasing number of preventative drugs that I seem to react to or do absolutely nothing for the headaches I am seriously getting to the point of *shudders* looking at brain food. Does anyone know what is in krill oil that helps so I can try and figure out what might be the veggie alternative.

Brain Fatty acids are more bioavailable by using Phospholipids compared to triglycerides as the delivery. Fish oil is delivered by triglycerides.

Flax Oil is and Omega 3 but the delivery form is triglycerides I do not believe it would have the same effect.

I will look for either the flax oil or flax seeds when I next brave the shops and try combeining with assorted nuts.
I will have a look at micro-algea/yeasts but I think I may just use more seaweed in cooking tofu with marmite.

Just an FYI about flax seed, if you want to add it to food while you cook, when buying flax seed, get the milled kind, looks like a powder almost.  That is the only way our bodies absorb it (not in pill form) and give us the Omega-3.  It obsorbs better and faster.  

...just my two cents

Flax seed oil may or may not be equivalent to fish oils (and probably isn't) - conversion of alpha-linolenic oil in flax into DHA, EPA, and other omega-3 fats that the body needs is low overall, and very low in some individuals.


Quote:

The intake of total omega-3 fatty acids in the United States is {approx}1.6 g/d ({approx}0.7% of energy intake). Of this, {alpha}-linolenic acid accounts for {approx}1.4 g/d, and only 0.1 to 0.2 g/d comes from EPA and DHA. The major food sources of {alpha}-linolenic acid are vegetable oils, principally canola and soybean oils. Other food sources that are rich in {alpha}-linolenic acid include flaxseed (23 g/100 g) and English walnuts (7 g/100 g). Although some {alpha}-linolenic acid is converted to the longer-chain omega-3 fatty acids, the extent of this conversion is modest and controversial. For example, Emken et al reported a 15% conversion, whereas Pawlosky et al found 0.2%; both reported that the conversion to DHA was much less than that to EPA. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Also, there is no reason to believe that ordinary seaweed is a good source of DHA or EPA - the total fat content is typically low (1-5%) and of that, only about 25% is omega-3 (red algae seems to be best). You would have to eat a very large amount to get a gram or two of the good omega-3s ... at that level, the amount of iodine would cause problems in many people.

Lissa wrote on Apr 1^st, 2009 at 7:27pm:

I agree with the others.  If you have an aura, it can't be a CH.  Have you had MRI or CAT scan?  Did you take the cluster quiz on the main page?  O2 usually works for CH.

Before coming to this site I referred to a "shadow" as an aura.  I could sense a HA coming but it wasn't the same as a real hit.  For lack of a better name, that's what I called it.

Jeannie

Mrs Deej wrote on Apr 2^nd, 2009 at 10:56am:

Just an FYI about flax seed, if you want to add it to food while you cook, when buying flax seed, get the milled kind, looks like a powder almost.  That is the only way our bodies absorb it (not in pill form) and give us the Omega-3.  It obsorbs better and faster.   ...just my two cents

Where did you find this information?  Seems silly that they would sell flax seed in an oil and oil in a pill form if this were not going to absorb into the body.  Can you post a link please?

Katie wrote on Apr 2^nd, 2009 at 9:10am:

I will look for either the flax oil or flax seeds when I next brave the shops and try combeining with assorted nuts. I will have a look at micro-algea/yeasts but I think I may just use more seaweed in cooking tofu with marmite.

The downside about Flaxseed Oil and why it may have not worked for me is that Flax doesn’t have the essential fatty acids necessary to produce the results.

Two of the major omega 3 fatty acids are DHA (docosahexaenoic acid) and EPA (eicosapentaenoic acid). These essential fatty acids and the important balance between the fatty acids in omega 3 fish are what the beneficial results are attributed to. Fish oil has been scientifically proven time and time again to greatly increase seritonin levels. I had no luck with fish oil. The delivery system of krill oil is different and that is why I tried it, seems to be working so far.

You’re body can manufacturer DHA and EPA from the ALA (alpha-linolenic acid) that’s found in flax.” Technically this is true. But, in actuality, only a miniscule 1/2 of 1% of the ALA consumed in flax oil can convert into DHA and EPA.

And even this tiny amount requires a good digestive system, ideal conditions and a complex conversion process.

But even then, to get the DHA and EPA found naturally in a 3 oz. serving of omega 3 rich salmon (the richest source), a person would have to drink gallons of flax seed oil.

I am not sure that would be such a good idea. Be careful.

wrote on Apr 2^nd, 2009 at 1:11pm:

Where did you find this information?  Seems silly that they would sell flax seed in an oil and oil in a pill form if this were not going to absorb into the body.  Can you post a link please?

I was told this by my doctor, read it in books, did a few google searches, read it in a cookbook....and I said "If you cook with it..." not taking it as a supplement.  Flax seed in a pill form is fine, but if you don't like to take pills or such, the option to cook with it and still get the benefits is available.  I didn't say that the body doesn't absorb the oil, I said when cooking with it, I have been informed by professionals to use milled Flax seed.

My experience with Flax seed is strickly for dietary needs and cholesterol lowering tactics.  


   

Thanks for the clarification, Steph.

JUST LIKE CLOCKWORK my spring (rightie) CH has popped. I have carried rhodiola in my bag for just this surprise. And got  my rosa canina (a so-called flower remedy) out... And ate some raw stuff... kept my clean water supply up...
Now I AM looking into some L-Tryptophan for emotional health. I hope to raise serotonin levels for peace of mind but there are so many claims and products out there...
WHATEVER, compared to my first (at 62) experience with CH using medical stuff, this one (at 65) is a walk in the park. My last hit lasted for only a few seconds and I craddled my head and said, "I love you, You are safe. Don't worry." THAT is different than the enemy image, the Beast, something outside of oneself, stalking...
However odd this sounds, this is my story. I am sticking with it. And I am willing to post it.
YOURS,

danielpeterson wrote on Apr 5^th, 2009 at 4:43pm:

I have carried rhodiola in my bag for just this surprise.

If I recollect rightly, you had a good series of posts about a year ago, describing your experiences using rhodiola during a cycle.  Anything further to report in that line?  

Best,

George

Cassie, I don't know if you tried Kudzu yet, but you might want to look up a thread called Synergy. It has a combination of multiple herbs that have helped some sufferers.

No krill oil for me, Iodine allergy here...

Thank you pixie for that info I will read up on it!

Cassie

Jeannie wrote on Apr 2^nd, 2009 at 11:03am:

Lissa wrote on Apr 1st, 2009 at 7:27pm: I agree with the others.  If you have an aura, it can't be a CH.  Have you had MRI or CAT scan?  Did you take the cluster quiz on the main page?  O2 usually works for CH. Before coming to this site I referred to a "shadow" as an aura.  I could sense a HA coming but it wasn't the same as a real hit.  For lack of a better name, that's what I called it. Jeannie

i hear you, jeannie.

i have never been able to describe a shadow.

(sometime's they are there all day, sometime's they are real heavy, sometime's they are mild)

or sometime's it's just jaw ache...or sometime's , it feels like
someone as it me in the kneck....with a pick axe handle.

but we should not flame someone, that cannot describe a shadow......because    i can't

pftuall

SORRY I couldn"t get a repy to George quickly. (Here in Montana I sometimes have to travel a distance to get to a library computer.) (AND, at 65, I was not brought up to be all that literate around the dang things... and sorry Mr. Computer, I didn't mean to put you down.) ANYWAY, I saved a hard copy of "Rhodiola Update" from 2008. Trooper starts it off and Superdave says he has a "friend who is well educated in homeopathics." Has anyone else any anecdotal evidence on rhodiola use? I can only say it seems to work for me. (Along with keeping away from caffeine and getting more sleep.)
Here's another one: when I get CH in my right brain, my right nostril seems to be clogged up. When I AM PF my right nostril seems to breathe clearly. Does anyone else see any breathing differences when they have an episode?