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NEW TREATMENT FOR CLUSTER HEADACHES

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maybe there is someone in the United States that is doing this procedure ??   I found this post on clusterheadaches.com

Cluster cured

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  Cluster Headache CURE

Nov 17th, 2012 at 7:23am   Yes there is now a permanent a cure it is simple, painless, and absolutely risk free!

My15 year old son was sent to detention at school for sleeping in class, this was because he would wake up with me 3 to 4 times a night and help me load my injection, fill my hot water bottle, microwave my heat pack, crush ice for inside my mouth, pour me a glass of ice water, I'll never forget that frightened panic stricken look on his face as he watched me been attacked.... ThatÂ’s when I knew I had to do something about this headache it was impinge on my loved ones and that was not going to happen anymore.

I had tried acupuncture, physiotherapy, homeopathy, anti-epileptic pills that make your fingers tingle, impotent, and walking up a flight of stairs feels you've just run a marathon, I used to inject the maximum daily dose of Imagran, I sucked 25 litres of pure oxygen per minute I used hot water bottles, ice packs I even used to stand in a bucket of ice if nothing else but to distract my mind away from focusing on the pain, crying pacing swearing shouting grunting rubbing running nothing kept this headache at bay. I learnt that breathing slowly and trying to relax as a mind over matter effort helped.

I had them on both sides of my face for 7yrs the cause is an dilating artery in your upper jaw that runs alongside the trigeminal nerve (under your gum in your jaw) and when that artery dilates it exerts pressure on the trigeminal nerve. An arterial ligation is all that is needed and I'm now permanently cured thanks to Dr. Shevel, at the  headache clinic  who performed the arterial ligation. it was  safe, painless (much like going to the dentist but without a drill) and risk-free as the ligation is done nowhere near the nerve and it is done outside the scull and away from your brain. (I would never trust deep brain stimulation.) All the ligation does is restrict the blood flow in that artery preventing the artery from expanding out of peroration and irritating the trigeminal nerve. It was quick and simple. Dr shevel has been performing this procedure since 1995 and he has been published in 30 medical journals.

FYI: Dr.Shevel can also cure Migraines as well by also conducting an arterial ligation to another artery that is situated in the temple.

The relief i feel post the operation is indescribably good, I feel fantastic and i can now live my life again, even drink beer hahaha, i can eat a full slab of chocolate and engulf my popcorn with MSG at the movies without having that demon headache hovering over me, this headache is evil  because it comes in the dead of night, and at any time, you never know for how long it will last or how painful the attack will get.

The attacks occur when this artery dilate this happens during rapid eye movement or when the brain goes into delta brain wave, and or when we over indulge in sugar, yeast, carbonated drinks, MSG, Preservatives, smoking. even high and low altitude can trigger it.

When this artery in our upper jaw dilates a pressure is exerted on the trigeminal nerve, this should not usually be a problem but, eventually the myelin sheath is damaged or irritated so it short circuits the nerve and sends a signal back to the brain telling the brain that your face is been slowly crushed and peeled off. Its at that stage that you'll do/say/try anything at to stop the pain. So put crushed ice in your mouth and cool your upper jaw, I also used the oxygen to cool my upper gum as well, you can try putting your finger in your mouth and applying pressure to the gum at the upper jaw right at the back (above and behind your back teeth) this, if you can locate the artery under your gum may give you relief. this is a lot easier said than done as it is very difficult to keep still long enough to get it right when you been attacked.

I also think that the link to smokers plays a big part as nicotine causes inflammation on the gums, inflammation breaks down bone and in turn altering the bone formation under the gums, in combination with the vacuum that is created when pulling the smoke into ones mouth causes the artery to over elongate work and squeeze the trigeminal nerve...

Good luck get cured and take your life back

Ryan

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anybody try the tight band around the head above the ear and eye ?

How do we diagnose who will benefit from arterial surgery? [edit]There are a number of methods used to diagnose whether arterial surgery will be of benefit.

1) There are certain scalp arteries that most commonly cause the pain of migraine. These are compressed with the fingertip during an attack. If blocking the artery by pressure relieves the pain temporarily, and the pain returns when the finger pressure is removed, then arterial surgery is indicated.[49]

2) Some migraine sufferers get relief from tying a tight band round the head just above the eyes and ears. This closes off the arteries that are causing the pain. If a tight band provides relief, then the surgery is indicated.[33]

3) Certain medications provide relief from migraine pain by constricting or narrowing the scalp arteries. If these medications give relief, then the arterial surgery is indicated.[43] These medications include the:

a) Triptans, namely sumatriptan (Imitrex, Imigran, Cinie, Illument, Migriptan), zolmitriptan (Zomig), eletriptan (Relpax), rizatriptan (Maxalt), frovatriptan (Frova, Migard, Frovamig), naratriptan (Amerge, Naramig), avitriptan (BMS-180,048), and almotriptan (Axert, Almogran).

B) Ergots. Any medications that contain ergotamine or dihydroergotamine.

4) Caffeine is a vasoconstrictor. If the migraine is relieved by caffeine, then the surgery is indicated.[34]

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How do we diagnose who will benefit from arterial surgery? [edit]There are a number of methods used to diagnose whether arterial surgery will be of benefit.

1) There are certain scalp arteries that most commonly cause the pain of migraine. These are compressed with the fingertip during an attack. If blocking the artery by pressure relieves the pain temporarily, and the pain returns when the finger pressure is removed, then arterial surgery is indicated.[49]

2) Some migraine sufferers get relief from tying a tight band round the head just above the eyes and ears. This closes off the arteries that are causing the pain. If a tight band provides relief, then the surgery is indicated.[33]

3) Certain medications provide relief from migraine pain by constricting or narrowing the scalp arteries. If these medications give relief, then the arterial surgery is indicated.[43] These medications include the:

a) Triptans, namely sumatriptan (Imitrex, Imigran, Cinie, Illument, Migriptan), zolmitriptan (Zomig), eletriptan (Relpax), rizatriptan (Maxalt), frovatriptan (Frova, Migard, Frovamig), naratriptan (Amerge, Naramig), avitriptan (BMS-180,048), and almotriptan (Axert, Almogran).

B) Ergots. Any medications that contain ergotamine or dihydroergotamine.

4) Caffeine is a vasoconstrictor. If the migraine is relieved by caffeine, then the surgery is indicated.

Not quite, the whole idea that vasoconstriction has been triggering clusters and migraines is an idea that has been debated for a long time and in my opinion proven wrong at this point.

http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=10878082

And this strikes to me the biggest reason that I will never let anyone slice into my head and start altering nerves and blood vessels.  Over and over I have heard these surgeons tell us they know what's wrong and how to fix it, and ending up with marginal results and sky high risk rates. 

We do not know how or why clusters happen, why would we assume at this point that we can hack into someone's brain and fix what we really don't know is wrong?

At times I also think that some of these doctors are taking advantage of us in the name of guinea piggage.  We suffer from not only the most painful condition known to man but also very high rates of serious depression.  So the question I pose is this----Can a very depressed person who is in constant pain give a answer that is not affected by this depression and pain when some guy says, "Hey, I could hack into your brain and maybe make you kinda better..."?

We have had amazing results for cluster headache with psychedelics and non psychedelic medicine (Bol-148) and it seems like there is a large portion of the medical community who want to ignore it because they are either scared of legal repercussions or got a little brain washed by the anti drug agenda of the 80's.

Our clusterbusting routine is in no way perfected.  We know this because it seemed like Bol-148 got a little closer to perfection--a drug that worked on clusters for months at a time and hardly any side effects.  From all I have read, it seems like we did not have to look hard or far to find this drug, we just had to look.  I find it very hard to believe that there are not other drugs out there, or current psychedelics that can be tweaked out that will have the ability to do what we want even more effectively. 

More drugs, less scalpels....I think that might be a new saying of mine :)

My apologies if I have hurt anyone's feelings with this post, we are all doing what we can to live with this beast.

-Ricardo

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OK well ,, they dont slice into your brain and in fact the surgery is quite superficial.   I came to this board about 2 years ago because my son had a headache that woke him out of a dead sleep and was excrutiating. That was October of 2 years ago .. he had 3 of these headaches in 3 weeks and many here told me "Oh that cant be a cluster headache, because he only had a few" well ,,, move on to spring .. guess what ,, same thing he had 2 or 3 more of these headaches. Neurologist said .. take this nasal imiterx ,, didnt help him at all.. Ok next October same thing 3 more headaches .. followed by 3 or 4 more in the spring.. I continued doing my research and comming to this board. and reading reading reading.  Now guess what .. the lovely equinox rolled around what 10 days ago ?? and he has had 7 yep .. 7 of these in less than 10 days .. not something we can just suffer through anymore .. he was in agony last tuesday. After reading the post someone put up here i started doing my research on Dr. Shevel,, I found mention of a trigger point in the mouth ,, so i tell my son about this .. so 2 days ago he feels what i think you people call an aoura ? or one comming on ?? so i tell him .. put pressure back here in your mouth .. he tells me it cut the pain by 50% ,, all im going to say to you is if you want to keep suffering ok .. but you really should do your research on this procedure (which again i say is minor outpatient surgery that has nothing to do with your brain) before you walk away.  Dr. Shevel in South Africa is the only one doing this. 

http://www.frequency.com/video/classification-of-migraines-enews-dr/54227671/-/5-9598892

I would like to add ,, he has actually been communicating with me via email.

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didgens, I hope this method will work for your son and for anyone with CH, or even for the 4 out of 5 that Dr. Shevel is reporting.

In the meantime . . . It is a little disconcerting that nasal imitrex didn't help him at all.  I've read back through your posts, and I'm perplexed  . . . Does he have oxygen?  Is he trying energy drinks and/or melatonin?  Is he doing the D3 regimen, or licorice root?  You talk about planting RC, and you ask about busting advice, but I don't see it indicated that he has actually tried busting.  For that matter, why not step up to injectable imitrex, which seems to work for practically everyone and seems less objectionable in your son's case because he has so few attacks to abort?  Or another medical pharmaceutical treatment -- verap, pred, etc?

I'm not proposing any of these things instead of the surgery.  That's up to him and you.  Like I say, just talking about things you/he might consider while he's suffering right now.

I can see why, with so few attacks per cycle, he might not have acquired oxygen (though it seems like a good idea now, as the frequency of his attacks has increased) or tried busting.  Energy drinks are a quick and easy go-to for aborting (if they work for him), and supplementing with melatonin is easy enough to try.  Licorice root (which you mentioned in a post or two) could perhaps be an effective short-term abortive/preventive, and the D3 regimen could be an ongoing thing for him and perhaps prevent or reduce the severity of future attacks (as preventive busting might also do).

(It's rare for people with just CH to experience auras -- very few do; it's mostly a characteristic of migraine.  But that might not be what your son was describing . . . or, he might be one of the few.)   

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I don't blame you for trying everything under the sun to get help for your son and I'm sorry for some of the generalizations I made. 

You are right, this is not brain surgery and the immediate (and I would suspect long term) risks are nowhere near the same.  In my mind I still get hung up on that "minimally invasive" thing.  To me, "minimally invasive" is still invasive.

This guys criteria for who will get relief from his procedure is what throws me off the most in this case

There are a number of methods used to diagnose whether arterial surgery will be of benefit.

3) Certain medications provide relief from migraine pain by constricting or narrowing the scalp arteries. If these medications give relief, then the arterial surgery is indicated.[43] These medications include the:

a) Triptans, namely sumatriptan (Imitrex, Imigran, Cinie, Illument, Migriptan), zolmitriptan (Zomig), eletriptan (Relpax), rizatriptan (Maxalt), frovatriptan (Frova, Migard, Frovamig), naratriptan (Amerge, Naramig), avitriptan (BMS-180,048), and almotriptan (Axert, Almogran).

First off, I don't buy his idea on why migraine medication works.  This whole theory has never held water, the link I put up earlier explains why.  Second--the idea that if any triptan works you might get relief sounds so promising and so generalized I have serious trouble believing that he said that.  What I do believe is that by saying that he gets a whole lot of people excited about the prospect of it working.

That seems kinda ridiculous, but this has not been along for long enough to know.  Maybe he's right and maybe 4 out of 5 will get relief out of it.  We've already had one board member come out and say this  procedure did not work for them, maybe they are just one of the few...but my guess would be that once this procedure has been around long enough that 4 or out 5 number is going to change dramatically.  One thing that seems weird is that the only write up of the results of this procedure I can find is the one where they talk about the results of just 5 people.  Has anyone been able to find any info on others?

My main concerns (no offense to those who do not share these concerns) would be first off, that this Doc does not seem up to date with how Migraines or Clusters are happening.  Maybe he is right, maybe our whole problem is a screwed up artery and a screwed up nerve...But from everything I have read on Clusters and Migraines I find this very hard to believe.

Another major concern is that with this being started just 3 years ago, we really do not know what the major effects of screwing with this artery is going to do.  I would be concerned about how changing this blood flow is going to affect me over the span of my entire life.  Maybe you really can short circuit this artery and be completely fine, but I have my doubts.

For me, I feel like I would need to see what happens to people over the span of at least 10 years...(even then it would still concern me about the effect on my later years).  Maybe I am putting too much faith in the idea that 10 years from now psychedelic medicine will have a better option for us.  I could be wrong and maybe all the surgeries have a real place for our treatment.  The whole thing seems like just too much of a gamble for me. 

Sorry if I ruffled any feathers.

Last thought--Your sons experiences with relief when pushing on the top of his mouth was interesting from a different angle for me.  Just last week I had a craniosacral practitioner talking about the relief some people get by pushing on this spot.  Her explanation had something to do with craniosacral pressure points or something.  I will ask when I see her again.  I'm not saying that your sons experience is not related to stopping some sort of blood flow, but there may be other  things at work.

-Ricardo

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good points all

first.  The neurologist i took my son to would not prescribe oxygen ,, much to my dismay.  he offered either the injectible imitrex or the nasal spray ,, being the overly cautious mom i opted for the spray ,, keep in mind my son is 20 so he has a mind (and legal rights) of his own. he tried the nasal for 2 of his headaches ,, he said it just tasted bad and ran down this throat. ok,, so strike that one.  he uses red bulls and takes hot showers. he takes advil,etc., etc.,etc., but like you know they dont kick in fast enough to help.  i have tried having him take advil and an antihistimine before going to bed .. no good.  I am actually growing an RC plant and have the seeds but he is hesitant to try them being a hallucinagenic and all. I told him he would not take enough to trip,, at present now we have an appt to see Dr. Kudrow at the Headache Center in Santa Monica in california. Dr. Kudrow's father was also a neurosurgeron suffered from cluster headaches so will see what he can do before getting a passport and flying half way around the world. I know there are many avenues to try before that long trip and surgery, but i also know thats a great one to have in the arsenal.    The pressure point isnt actually on the roof of the mouth it is back behind the molars almost in the jaw,, and actually when i told my son this he told me that he had pushed back there with his tooth brush the last time the headache came on and it seemed to help. On friday as he felt one comming i gave him ice and told him to take a piece of it and push back on that nerve with the ice. he said it cut the pain by 50%.

The Licorice I bought i ended up eating  :-/ because he stopped having headaches at that time.

Dr. Shevel started doing these surgeries in 1992 not 3 years ago.  The 4 out of 5 number is just for the published paper. He has preformed this surgery many many times ,, you can find testimonials all over the web. I believe he has preformed over 500.   because a technique sounds generalized or overly promising shouldnt cause disbelief.

all I am saying is check it out. there is a doctor here in the states that is a plastic surgeron that found when he did plastic surgery on the forehead, migrane sufferers stopped having headaches.   Really its worth the research.

anyway.. I think all you people here are amazing.. and am so grateful for all the ideas you have helped me and my son with. Instead of it taking years, I knew right away to get the red bulls, to get the triptans etc. I will go pick up some melatonin at the local store today and we'll give that a try too.. and pick up some more licorice and not eat it ;)

(im going to skip over the shevel being a quack, he is published and peer reviewed and if you want to see videos of patients click here ,, also i would be happy to corrospond with my emails to/from him for your review, or better yet you can email him he will respond to you. There is a member on clusterheadaches.com named david g or david goldberg that talks about a procedure he underwent from a doctor here in the states you might want to research.

http://www.drkudrow.com/about/about.htm

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just to be clear, didg, what you want is licorice root.  it's a liquid, sold in natural food stores and places like that.  homeopathic.    http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

dr. kudrow is pretty well known here.  he seems like a good, caring, imaginative, knowledgeable guy.  if he has anything new to offer, i'm sure you'll let us know.  at least, i suppose, he will prescribe oxygen, which is a good thing, and maybe he'll convince your son to try some other things.

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thanks CHF ,,, the licorice i had was the kind from australia with the root extract candy. I'll look for the liquid ,, less likely to eat it that way. Have you tried the licorice and/or melatonin ? any success ? I definatly will let you know if he has anything i havnt seen here up his sleeve. Im thinking maybe the imitrex injections (which scare me to death) and definately the oxygen is what i will push for. thanks again all.

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I don't have CH myself, d.  Like you, I'm the parent of someone who has it.  All I know about melatonin and licorice root is what I've read here and heard first-hand from sufferers.  Plenty of reports of both licorice root and melatonin helping . . . but not always, of course.

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Really its worth the research

This I wholeheartedly agree with.

And for the record I don't think this guy is a quack.  I think he is like a lot of people that find a cluster headache sufferer that gets relief and start thinking "I've found it!  The cure for cluster headaches!" Maxilofacial surgeons get to this by doing what they do, dentists get to it by oral surgery.  And I think it's all true.  My real feeling is that "Cluster Headache" is being caused (or triggered) by a multitude of things, that's why sleep apnea can cause it in some people and not others.  And on and on we can go with individual triggers that fit small parts of our population but not all.  I am sure there is some sort of common denominator that we will figure out eventually but for now we reduce symptoms and try to control triggers.

But all the research is important, regardless of whether I want to partake in it :) In my haste to put this whole idea down I skipped over some really important info.

This guy says that in some cases Cluster Sufferers are suffering from a demyelinating condition where the Myelin sheath around nerves are wearing away.  This is what is essentially happening to MS sufferers but on a much larger scale.  Could cluster be an autoimmune disease like MS, but much more localized?  I have heard the question about autoimmune posed before.  But even if we can figure out that, I don't know how much help it would be, seeing as how MS is another condition that we don't really have many options for. 

Two experiences I will share, who knows if they have any bearing on our situation. 

I know a man that was completely bed ridden from MS.  Eventually he started "bee sting therapy" (honey bee stings all over his entire back, sounded like it was a lot of stings) This got him out of bed and able to function from a wheel chair and get back to work.  He stopped the therapy a few years back because the guy that was doing it for him died, but the help he got has lasted.

A good friend of mine was diagnosed with Tardive Dyskenesia, a condition that involves involuntary jerks and abnormal facial movements.  It is also a demyelinating condition, but this time caused by side effects of an antipsychotic drug. (warning to all that get the recommendation on our CH.com board to try out Zyprexa for your clusters--something not mentioned often is that it can give you this from one dose.  Not likely, but it can.) 

After a little research it looked to me like lecithin supplements might help rebuild the myelin sheath (or at least slow down it's destruction).  She took the supplements and her symptoms went away.  Definitely could have been a coincidence.

Lecithin is some seriously good stuff for you.  You can get it from runny egg yolks (not cooked), sunflowers and soy--but don't get me started on just how poisonous I consider soy to be :)

http://www.wisegeek.org/what-is-sunflower-lecithin.htm

-Ricardo

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