Hi and welcome to the board. Not one of the more technically educated on the board so certainly not qualified to comment on the chemical interactions you discuss.

I will say that since I added the B-2 and magnesium supplements to my daily diet, on and off cycle, my cycles have been much milder. If you add amagnesium supplement remember to add calcium as magnesium leeches calcium outta your system.

Glad you found us.

Joe

Okay, could you give us a little insight into who you are?  Your medical background, qualifications, etc?  What your prescribing physician thinks of all of your theories?

I did ask.

Guiseppi wrote on Jan 27^th, 2009 at 10:02am:


Thanks for your welcome, Joe. Like I said, a B-complex (including not only B2 and magnesium, but B3 and B6 too), help me too in order to diminish the length and pain level of attacks. I can not take it, however, like a preventive every day 'cause 6/7 days after I start, it makes no more effect. So i take it only when pain it's arriving or yet arrived. I always carry one in my pocket.

Regards.

P.S. In other matter, I read a message taking about O2 like prevent way, when you say no knowing studies about this. I don't, too, but I read from the moderator of the french forum, Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or , Trinity, that she did it with succes during a cycle. She explains to do it every day at fixed hours and if possible, just before the estimated attack hour. Even she say the dose but I don't rememeber more. Sorry. Ciao.

Thanks for doing the intro Poli! I think the volume of info in a first post caught several people by suprise. Sounds like he is someone to be listened to. The language barrier did make it a little tough!

Joe

UnderTheRadar wrote on Jan 30^th, 2009 at 12:37pm:

Hello. I have no problem to give it. Spanish, 48 years old, Engineer and working like C++ programmer with own enterprise so many years ago. Enough maths, chemical, physical knowing to understand some technical pubs, CH from 1995. Mi wife and nearly all friends, Medichal Doctors, my sister Pharmecutican.

Studing CH from (of course) 1995 I can read and understand (nearly   ) texts, even some technical,  in Engilsh, French, Italian, Portugais and Spanish. And I've do it from 14 years. No just texts about CH, not at all; all text that contains vasodilatation, seroronine, melatonine, and such more. I've found incredible info at Psychiatrian Docs related with depression, Docs about Dawn Psyndrome, Phybormyalgia, animal migration, and so, and so more.

The personal question for my first negative answer is that I was just relating my personal experience, not giving medical advice, I never do so 'cause I'm not who to do it. Or at least this was i tried to do; if it seems otherwise, I ask everybody for excuses.

I realize I did something wrong, certainly. Not to do a minimal presentation of myself at first, and not to explain nothing. I did it so because you can see it's hard for me to explain things in english, so I'have been too short and direct. I don't intend to participate in the forum. Not because I dont wont. Sure I want. But I have no level to do it. Im sad for this. I would only, I felt the need to do it, to transmit the info of a new no-toxic way to fight against CH.

Sincerely, Gonzalo.

P.S. I've wrotten this message some times and I understand that seems a puzzle. SOorry.

"I felt the need to do it, to transmit the info of a new no-toxic way to fight against CH."  

Yet, in your first post, you instruct us to take a whole host of drugs- Fluxetine/Prozac, Anacervix, a mix of Vincamina and Piracetam, and my favorite- Flurazepam/Dormodor:  

"Flurazepam is a "classical" benzodiazepine, other classical benzodiazepines include; diazepam, clonazepam, oxazepam, lorazepam, nitrazepam, bromazepam and clorazepate.[2] Flurazepam generates an active metabolite with a very long elimination half life of 40-250 hours. Residual 'hangover' effects after nighttime administration of flurazepam, such as sleepiness, impaired psychomotor and cognitive functions, may persist into the next day, which may impair the ability of users to drive safely and increase risks of falls and hip fractures." (wikipedia)

How is this "non-toxic"?

"I was just relating my personal experience, not giving medical advice"

No, you flat-out TOLD us to "use this" and "take this" and "eat this".  That is most definitely in the category of "giving medical advice."

Sorry, Poli, but I do not find questioning the medical diatribes of a total stranger to be ANY EXCUSE for being told I am unkind, unfriendly, or inappropriate.   It's not about the initial post- it's about the responses to my valid questions and the runaround I got, not to mention the sarcastic tone you both take....don't pull the "poor English" card with me and then make petty little sarcastic jokes.

And if he IS a forum administrator, then he should know damn well not to just come on to a new board and start spouting medical advice and not expect a little skepticism!

Now just compare me or my friends on this board to a violent maniac on a TV show with underdeveloped testes one more time and SEE how "unfriendly" my responses get.

kiritz wrote on Feb 4^th, 2009 at 9:10am:



Hola Gonzalo! Thank you for sharing what works for you. And thanks for taking the time to translate for us. Welcome to the board. I hope you are able to post more, and tell us of your experiences.

UTR, I hope you don't take offense at what a fellow CH'er relates as his experience as to what works for him. I am sure he wasn't prescribing anything to anyone. Just as I'm sure you didn't mean to give out medical advice in this thread:

UnderTheRadar wrote on Jan 26^th, 2009 at 4:35pm:


Also, there is this:
Quote:


Let's give Gonzalo the benefit of the doubt. I'm sure he has a lot he can share with us.

ClusterChuck wrote on Feb 4^th, 2009 at 12:04pm:


I will second what Chuck said here.  I think maybe a step back is in order here UTR.  We are all here for the same reasons, let's remember that.  One person's "remedy" may work for some, but not others.  

Carry on....  

Welcome aboard Gonzalo.  I read your post with a great deal of interest.  As it happens, I was prescribed a very similar concoction from the doctors at the New England Center for Headache in Connecticut.  Dr. Tepper had me take magnesium, and Vitamin B  - specifically B2, B6 and B12.  He didn't want me taking a complex though, he suggested that I take each one as it's own pill and not use one that mixes the B vitamins.  

L-Tryptophan, melatonin, kudzu, caffeine and taurine are also supplements that people here have used with varying degrees of success.  

Your suggestion to the connection of seratonin is pretty sound.  The triptan class of medications works on the 5HTP1b/1d (5-hydrotryptophan) receptors in the brain by activating the seratonin pathways.  I have tried 5HTP supplements as well with some success - not sure if you can get them where you are, but I bought mine at a drugstore here called Walgreens.

There is a new neuropeptide medication being explored as well.  CGRP receptor antagonists (calcitonin gene-related peptides) are being studied by several pharmaceutical researchers for use in migraines (and by proxy that's how we CHers get most of our meds).  It appears that in most CH sufferers (some companies like Merck are looking very specifically at CH for these) our CGRP levels, activated by the trigeminal ganglia, are at significantly increased levels.  The preliminary results in the studies that have been completed look very promising for the CGRP receptor antagonists.  

The beauty of the CGRP drugs is that they are able to treat the pain without the vasoconstrictive properties that triptan medications have.  It is one more avenue that we can look to, for help relieving our suffering.   Most of the things you mentioned also affect the CGRP receptors, the same way they affect the 5HTP receptors.  

Unfortunately, it leaves a problem - they don't use the seratonin pathways for their modality, yet they are showing equal and greater effectiveness to the triptans.  Because CH gets studied as a secondary to migraines in most of the studies, it's hard to know where to look for the specific answers to what really is the trigger to the pain.

Isolating the 5HTP and CGRP receptors has been a great advance, but all they know of it in regards to CH is that it's still a symptomatic result and not causative.  Both activate the trigeminal ganglia and cause the unilateral trigeminal autonomic symptoms that the IHS lists as criteria for CH.  

Additionally, Prof. Peter Goadsby and his colleagues have about 7 studies out now, that has caused the IHS to reclassify CH as both a primary (it was previously thought of as only a primary) AND a secondary headache disorder - secondary to pituitary disorders.  According to Prof. Goadsby back in July of 08, when you are a secondary CHer, the only effective treatment is to remedy the pituitary disorder.

When you analyze all the information and data that's available, it all has solid merit and I believe should be investigated fully - since they believe the origination of CH begins in the suprachiasmatic nucleus in the hypothalamus.  The neuropeptides and amino acids that come into play, all have an effect on the hypothalamus (some more than others) and/or the pituitary gland.

I am not sure if O2 has any effects with the above receptors or not - I don't think there's been anything studied to that extent when speaking about using O2 as treatment, whether you abort, transition or prevent with it.  It will be very interesting to watch and see if there are any correlations made.  I haven't done enough research with the O2 and the neurons, neuropeptides, amino acidds and other factors to be able to even hazard a guess at it's modality of treatment.

Keep us posted about your eternal spring!  The SCN in the hypothalamus governs the circadian rhythms and that is one reason they think that melatonin and other methods (like seasons) that effect the body clock and circadian rhythms seems to work.

Thank you for taking the time to share your experiences, you have some very sound reasons for your belief in the treatments that work for you.  The language barrier does seem to make things harder to interpret correctly, but I think you did a terrific job!

Cat

Disclaimer:  I am not a Doctor, researcher or scientist - all the information I posted is readily available to anyone who wishes to take the time to read the books that are available, the medical journals and abstracts, and the clinical studies (past and present) that are available - most of them on the internet for free.  I own several books on CH that I have accumulated over the years, including Dr. Kudrow's book on Cluster Headaches that is no longer in publication, and have spent many years researching the technical and medical research on the modality of treatments as well as the causative aspects of CH.

I just want to set the record straight here- I only got pissed off because first he was snotty about answering my genuine and honest questions concerning his theories and who he is and why we should listen to him, and then that other guy made a truly nasty comment referencing that *&@! TV show character.  THAT was why I got hot under the collar.

And when I gave advice on other threads, it was because someone ASKED for advice, and on a subject for which there IS no "official" advice out there, only anecdotal support.

I have shown a lot of support to my fellow sufferers here...yes, I'm relatively "new", but I don't think any of you could characterize me at this point as being an not a very nice person.  so to get flamed like this, by all of you, and called out like this, when I have seen other people completely THRASHED for simply using the word "cure" in a post, really brings me to tears.  This board was probably the only thing that has kept me above ground at this point.

catlind wrote on Feb 4^th, 2009 at 7:51pm:


I agree that CGRP blockers hold promise, but why wait years for Merck, when you know they will charge as much as they do for their newest triptans ($50 or more a dose)?

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One naturally occurring type of compound that has been shown to inhibit CGRP is the procyanidin oligomers, according to the first article. These are present in a number of whole foods, although the a person consuming a typical western diet might not consume much.  

That second one ties together CGRP and hot flashes, which might explain a few things discussed here recently.

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Smoking increased calcitonin.

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Traditional ethnomedicines rich in compounds that block CGRP, Bradykinin, and neurokinin.

There is also a large body of research that shows that one of the first signs of magnesium deficiency is an increase in CGRP levels; there is a separate body of research showing that clusterheads are deficient in magnesium:

This study spotted magnesium blood levels in cluster heads at 0.5 - 0.56 mmol:
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Most research puts the typical levels for normal people at 0.8 to 1.0 mmol, and many researchers consider anything under 0.75 or 0.7 to be a severe deficiency:
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So according to what is known, most of us may be suffering a deficiency of a simple mineral, and that deficiency can elevate CGRP.  And the answer is to wait for some company to develop a CGRP blocker???  I don't think so.