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saintpeter

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My apologies for the‚ ahem‚ nature of this post‚ but my curiosity has been raised by a chance encounter. I've just been on holiday in South Africa‚ staying in a tiny village of 5 thousand people.
I was questioned as to why I didn't drink‚ and told my friends of CH. One older guy in the group was‚ to my astonishment‚ a past sufferer and we chatted for a bit.
I mentioned that when I had an attack‚ i usually sit on the toilet‚ and frequently have a dump at the same time. (Sorry- gotta give the background)
My friend then said that he had had to have collonic irrigation as part of therapy for a colon problem and bam- no more CH. Never had one since. Has anyone ever heard of such a thing happening? I am not averse to trying collonic irrigation‚ but would like to know if anyone has tried it‚ and what results they had.
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Kate In Oz

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From: Ballarat
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Ok‚ to start with I've not had it done... yet icon

What amazed me with your post is your ability to sit (still?) on the toilet during a hit! Wow‚ I have a hard enough time sitting still and sucking back the 02. I'm thinking it could get kinda messy icon


Nevertheless‚ no reason not to give it a go! Imagine that‚ no CH ever again!!!

Let us know how you get on icon

Kate
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saintpeter

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Hi Kate‚
not exactly sitting still‚ and I have managed to break one dunny‚ but it's the coolest room in the apartment. I still can't get O2 so I'm spared the indignity of making a mess of it.

Apart from one slight attack on the plane coming back from S.A‚ I've been almost attack free for the past month-- (frantically touches all wood in the area...)
My Neuro in OZ tried me on ADHD drugs a year ago and they worked brilliantly‚ so in South Africa I picked up some diet pills which had almost the same ingredients just to see. Well‚ they work. It might be unconventional but I don't really care‚ attack free for a chronic is like hitting the lottery.
Now I just need to get my system flushed...
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Roger

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From: Latrobe
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Hi‚

this is a very interesting thread.. please keep it updated.
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countryboy

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From: Rockhampton
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Hmm...I often end up in the bathroom in the same situation as saintpeter described. Any further word?
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Barry T Coles

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From: Karratha
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I have heard of this before on the US CH site‚ it came from someone in Europe but he didnt hang around for long.

Hell I'd stand on me head in a fresh cow pat sipping sarsbarella through a straw by nose if it cured my CH.

Keep us informed Peter.

Cheers
Barry
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saintpeter

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To be honest I haven't gone any further with the irrigation bit. My spoken Russian is embarrassing enough already‚ without having to stumble through asking for a kit at the chemists.
What I did do though was look for‚ and start on‚ a colon flushing diet. So I now drink lots of fresh fruit and veggie juices‚ eat less meat and pasta‚ hardly touch bread. When I eat muesli it's with drinking yoghurt instead of milk‚ which agrees with me more (I don't know why‚ just because).
Anyway the end result (sorry) is virtually no attacks‚ although I can't say if it's diet or not‚ but I'm not complaining.

I still shadow fairly regularly‚ and had a real attack just last week when in a too hot kitchen with too little air and my mate set fire to a t-towel while cooking fish; but really as I was severely chronic‚ this is a cakewalk (whatever that means). I might bite the bullet and get a flushing kit‚ I'll keep you informed...
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Leesy

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From: Perth
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You know - if you do some research regarding 'the gut' and illness most of the alternate therapists will say that if the gut is full of bacteria (and / or whatever else) it can cause soo many problems.
Toxins and heavy metals harbour an otherwise healthy body and cause headaches (and a struggling liver which in turn effects the spine at the base of the scull.)
The only thing I know about Colonic Irrigation is to make sure you ask them if they use filtered or distilled water - its important.
I often think to myself that it would be a good idea.
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fletch

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hi all im new to this site but have suffered ch for about ten years went to all sorts of doctors and ended up, at the advice of a neurologist, at a gastroligist at the peter maccallum institute at box hill. After an exhausting round of tests he found that i have scar tisue where my lower intestine meets my bowel. His theory on this was that i was ingesting something , being either toxen or food that was causing it to close and that diet could well prevent this, and interestingly envolved in those tests was a bowel cancer test that envolved the dreaded apparatus and the headaches stoped i thaught this was a coincidence until reading this thread, any way i have watched my diet and was ch free for about 3 years untill recently where my diet has suffered over christmas and they are back but have no dought that for me any way they are diet related. I would like to ask , hestitantly, while suffering a bout of attacks has anyone else noticed a bit of blood after going to the toilet as i have been in the same situation as saintpeter and i know that when i see that blood for next few months i will be in aggony
great to hear from people who understand the pain and good to see people supporting each other
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Dusker

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Hi Fletch and welcome
I would have to answer your question with a simple NO with regard to noticing blood, what I would be concerned about would be noticing blood at all! Surely this would require a follow up with a Doctor for a check.
Heather
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Dusker

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Hi Fletch and welcome
I would have to answer your question with a simple NO with regard to noticing blood, what I would be concerned about would be noticing blood at all! Surely this would require a follow up with a Doctor for a check.
Heather
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fletch

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hi heather
yes you are right and that is one of the things that the specialist at the maccullum institute was looking for when he found the scar tissue, no cancer thank heavens. but after being there i am starting to learn how to manage my condition and focus on not getting the attacks rather than pain mangement after they come. The biggest thing that i have found for me is breakfast , a high fibre breakfast , there has been times in the past with a busy work schedule i have skipped it and after a week or so i notice that my neck and shoulders are starting to get tight with a very mild attack of about a half an hour and i will make sure i put the time aside for breaky and and start eating properly and they will go, this time however i have ignored those warning signs and it has been at my peril. now they are here 2-3 times a day and quite savage i guess the damage has been done and untill it heals i will get the headaches.
thanks for welcome to heather
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Ben

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Currently suffering :(
Hi to all,
Some gastrointestinal insight from a long-time CH sufferer.

Nearly every drug datasheet or consumer information sheet will list some form of gastrointestinal side effect.. Some common, some not.

Any regular long term user of opiods will be familiar with constipation.
I recommend eating a bowl of Bran or high fibre grain every morning religiously.
There is new evidence to support the theory that bowel cancer rates and other gastrointestinal problems are dramatically reduced by the consumption and absorbtion of bran whilst in transit through the gastrointestinal tract.
Sultana bran, all-bran, bran flakes etc.

Check out the C.S.I.R.O's new supergrains too. There might be some merit in what they are currently researching.

For High concentration users of opiods (Codeine) etc. I recommend keeping a bottle of Prune Juice handy in the cupboard. If you are getting constipated to the point of straining, bleeding and either have Hemorrhoids or are at risk of developing them.
One good 250ml glass of prune juice per day should get the system working again.
Forget Metamucil or laxatives, they affect other drug mechanisims and uptake, have contraindications and can worsen existing bleeding problems.

Any users of Diclofenac (soduim or potassium ) (Voltaren), Indomethacin (Indocid), Ibuprofen, Aspirin or other NSAIDs will probably experience some gastrointestinal side effect or other throughout the course of their treatment. More likely stomach burning, indigestion, reflux, heartburn, ulcers or problems associated with the top end of the gastrointestinal tract. I have tried many unpleasant reflux drugs. They are all essentially based around the idea of drinking or otherwise ingesting chalk. When you are on something as strong is Indocid, this can be counterproductive. Especially if the Indocid does not work...

Every one's body is different, every drug is different and every individual responds differently to any given drug.

The first and most often overlooked problem is lack of water consumption.
Dehydration can be a major cause of primary headache (including CH) in MOST people.

Anyone on opiods, Topamax or any other CH treatment should be drinking an absolute MINIMUM 2 litres of water per day. Whilst on some particular CH drugs, during summer I have been known to knock back 4-6 litres of spring water per day.
Frequency of urination is ridiculous, but better this than develop Kidney stones from Topamax. Adelaide tap water is crap - up to 600-700 ppm of Total dissolved salts (TDS), not to mention the other impurities - such as flourides and chlorine concentrations. I have recently changed over to spring water - at $20 per fortnight for 44 Litres, delivered - less than 10 PPM impurities. I believe it is worth it in the long run.
At the very least get yourself a Reverse Osmosis (RO) water filter or Puratap.
It's your Kidneys that do all the work if the water filtration is not present.

Bright red bleeding from the rear end or spotting on toilet paper can be a sign of Hemorrhoids, overuse of Aspirin, NSAIDs, benzodiazipines, or some other CH drugs. Even Imigran has made this worse for some people. Small amounts of bright red blood appearing are not usually of major concern, once checked out by the right clinic.
Check with your Doctor.

If you experience darkening of the stool, or outright black stools. There may be a more serious problem that is allowing internal bleeding to take place further up the gastrointestinal tract. This will need quick medical examination to rule out more severe conditions.
Speak to your Doctor immediately if this happens to you.

I have found some evidence based around ideas that when a CH begins, the gut begins to shut down first. Most CH sufferers do not sit down to a 3 course meal during an attack - for obvious reasons. But hunger is usually not of the highest priority when in the middle of an attack.

There may be some merit in the "Full of it?" idea that has been propositioned on this thread.

Ben.
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fletch

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hi ben
sounds like you know your meds and your right i have been given that many different ones from the neurrologist to try and find out which ones work the best but they didnt work and side effects were making things worse if anything especialy anything whith codeine in it and when i went to peter mac and he found out the blood was internal he told me throw them all out. you can understand my hesitation at first but he suggested a diet and gave me an understanding of what was happening in my digestive tract so i thought id give it a go , i had tried everything else , and i got more relief from that than anything else is tried. just lately though i overendulged at chrismas and diverted from the diet and started to get the headaches again , but if i eat a big meal ounce im in a cycle i will with out dought get 10's the ones you think that its just not worth it so i eat smaller more proportioned meals with a high fibre breky and i will still get them untill the cycle finishes but they will only be mild. Ounce they are gone i will start eating properly again and stop getting up late and pigging out on bacon and fried stuff and that is how i kept them away for so long last time. Before that i was getting them twice a year for 2-3 months and nothing would stop them
maybe as you say its not the same for everyone and each persons body is different but with me from what i have experieced there seems to be a drect coralation between what i eat and ch. great reading your coments ben
Ian
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Ben

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From:
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Currently suffering :(
Ian,
Sounds to me like you could do some research into nitrates in food products and how they affect if you haven't already done so.
Ham, bacon and some preserved or cured meats can contain high levels of Nitrates and have been known to cause some types of primary headaches in some patients.
I can eat a half a pig if I want to, regardless - I will get a CH attack when my head is good and ready. However, I have noticed that preservative laden, processed food products dripping with (220 preservative) can be a problem. Any pre-packaged deli meats (Hams, salami. mettwurst etc.) that have long use by dates are usually loaded and dripping with preservatives and nitrates.
Another one I have had to personally watch out for and avoid (Mid CH phase) is flavour enhancers, especially the E365 ones in Arnott's Chicken Crimpy biscuits. http://www.mbm.net.au/health/620-640.htm

List of E numbers at wiki:
E365: http://en.wikipedia.org/wiki/E_number

Something to chew on...

I find Cashews much more helpful.

Cheers, Ben.
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fletch

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Currently suffering :(
ben
i think you are missing my point im not suggesting that bacon is causing it or any other one type of food in particular just that , because there is something wrong with my digestive tract wether that be from birth or caused by some other means it is imperitive that i keep a good diet and doing so i was able to stop them for about three years without any drugs at all , the one time i didnt and i did not take notice of the warning signs i got them back this to me isnt a coincidence and what you are saying about preservatives and flavour enhances is true as well, and i have reseached, but with fresh fruit and vegebles and a good balanced diet they are at a minimum anyway. i also am aware that saying your stomach is causing ch sounds bizzare but it worked , for me any way , much like many people on this site i got them that bad , every few months i went into a cycle of them left eye red feeling like its about to explode out of my head nose run my left side of my jaw , neck and so on down to nothing with diet only no drugs that is all i was trying to say
Ian
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chrisjs

(Member)
From: Applecross
22 total posts
Currently suffering :(
I've had CH for 14 years and a bad stomach for all of my 31 years. I get the urgent need for the loo when one comes on- but also strangely my terrible irritable bowel general becomes less of an issue during a cluster period.

I've had colonic irrigation on 2 occasions, they certainly haven't stopped the attacks overall as shown by my current nasty bout. That said, I can't ever recall having a cluster period within 6 months of either time having colonic. Could just be coincidence though.

What isn't coincidence clearly is the number of us that have GI issues. Very much worth considering.
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Ben

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Currently suffering :(
Hi to all,
Firstly, it is important for all CH patients to be aware that Western medical science does not yet fully understand the mechanisms at work behind CH. Medical research consistently and repeatedly states that society's best medical practitioners and scientists have little to no knowledge about what actually triggers CH or how to specifically isolate and effectively target CH with any type of treatment.

Our current understanding of CH is very limited.

Most CH patients out there are acutely aware of this.

It is my unprofessional view that gastrointestinal problems are so common, that they will show up in the CH population, as they do in a large cross-section of the general population. At some point throughout their lives, a majority of people will suffer from, or present with some form of gastrointestinal complaint. As a CH patient of 30+ years with gastrointestinal complaints, I would be hesitant to leap to conclusions linking ANY co-existing health or medical condition with CH. Be it gastro-intestinal or otherwise.

Please consult with medical specialists to investigate your condition(s).

In my case, almost every possible medical "link" with CH has been clinically investigated and categorically ruled out. My exhaustive investigations into links between CH and co-exisiting medical conditions at one stage had me thoroughly convinced that several other things may be contributing factors to my CH condition. The avenues of investigation never end. It can do your head in, bordering on hypochondria.
After 30 years of investigation, 50+ drug trials, countless procedures and extensive trial and error - I now think otherwise.

I too have experienced the pathological need to move forward, to "take control" of the situation and "solve" my CH problems. My exhaustive attempts to link my co-exisiting medical conditions to CH have only complicated and prolonged my CH diagnosis and subsequent treatment for my Doctors, Specialists and myself.
Whilst also making my life a very unpleasant experience.
Speculation on my part about possible links between conditions was fraught with disaster. It led me through 10 years of painful and unnecessary medical investigation.
Medical science and I were both left stumped in the end...

I still have CH...


(The only solid links I personally have left to investigate are currently centred around Circadian Rhythm, Melatonin, GABA structures, the dark-light cycle and sleep patterns:
http://en.wikipedia.org/wiki/Circadian_rhythm
AND the impending arrival CGRP receptor antagonists.
I will go into more detail on a new thread for those that are interested...)

However, despite my personal misgivings - there are demonstrated complex anatomical links and interactions between the gut and the Central Nervous System - including the Brain. Although CH is not yet fully understood, science can neither rule in or out the possibility of a connection between CH and Gastrointestinal function or dysfunction.
Some CH patients out there with co-exisiting gastrointestinal conditions may just be onto something, in relation to their specific individual case.

I would like to take the opportunity to make CH patients aware of another CH treatment called "Vagus Nerve Stimulation" (VNS). Although this line of investigation may seem somewhat dubious to some, there are many CH patients who still feel that their CH and gastrointestinal conditions may be linked in one form or another.

Some CH patients have already made significant improvement to their condition through use of this Nerve stimulation therapy.

Some reference material for your perusal...

Wiki article explaining the Vagus Nerve.
http://en.wikipedia.org/wiki/Vagus_nerve

New York Times article on Cluster Headaches, featuring treatments including Vagus nerve stimulation:
http://health.nytimes.com/health/guides/disease/cluster-headaches/s
urgery.html


Article on clinical trial results for VNS in cluster headache patients:
http://www.ncbi.nlm.nih.gov/pubmed/15658944

I hope this offers some insight to some people,
on the age-old question: "Head or Gut?"

Cheers, Ben.This post was edited on 13/02/2011 at 10:12 am
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saintpeter

(Member)
From:
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Our bodies are generally pretty quick to alert us to an imbalance. Despite this, a lot of us ignore the warnings and carry on mistreating ourselves. Western medicine generally treats the symptoms and ignores the underlying cause i.e. the imbalance.

CH may or may not be the physical manifestation of such an imbalance, but that is not known. Until we find the root cause of CH, we need to freely share information.

Especially as i'm now suffering
icon
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stevek

(Member)
From: Middleton
33 total posts
Not currently suffering :D
saintpeter said: ... Despite this, a lot of us ignore the warnings and carry on mistreating ourselves.


Says the guy with an avatar holding a bottle of bubbly. icon

Sorry to read that you're back on again - all the best for the session. I'm still 'green'! Since Xmas when I decided to have a few glasses of champagne (bugger it) and another 'do' on Boxing Day. No headaches! Having been exceedingly careful of alcohol intake (thanks Dusker) I've found that causing my nasty liver numbers to head north my CH attack has stopped! Not talking bottles of Jack Daniels here by the way just a bottle of red a day.

There are a myriad of posts on the site about not drinking during a CH period, but for me it seems to stop them. Not for everyone obviously but it does, I think, just emphasise that no-one knows what causes them or what can alleviate them (for everyone).

I also thought that smoking dope for years could have been a cause. So stopped ten years ago. And have started again with absolutely no ill effects! Munchies and music - can't beat it.

All the best to you all. One day someone will find the commonality between us all.
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Stix Al

(Member)
From: Treasure Island
1 total posts
Not currently suffering :D
I just sent this info to SaintPeter:

I was just surfing cluster headache sites, as I seem to have beaten the "devil", and I need for someone to know about it. I have tried to post this info on other CH sites, but nobody will listen. The info originally came from a Harvard medical webpage, but it no longer exists, hence nobody believing or trusting me.

The original article was titled "Cluster Headache Cure". I was a sufferer for over 20 years. I was a "head-banger", and used to pound my head into the nearest wall, as that pain over-rode the CH pain for a second. I was chronic as well, so I was virtually handicapped. I went to countless doctors, and had countless treatment. And yes, of course I was a total guinea pig! I have taken ALL of the medications and treatments listed on this site. Nothing helped.

Back to the article. It read "you may be hypoglycemic". What I think it meant to say was "hyperglycemic". Anyways, it means a sugar imbalance and/or sensitivity.

I understand what you said about taking a dump when in an attack. I used to get bad gas when they happened, and it seemed as though having a good fart helped out a little. ;-) But as far as the sugar imbalance goes, it did apply to me apparently. So what I did was to take most of the sugars out of my diet, and I have been CH free for over 4 years now. I can tell if I consume too much trans-sugars, because I will get a "shadow" for a couple of minutes, but it never kicks into an attack. Since I like beer and pasta, which converts into sugar, I have to make sure that I don't eat any desserts on a drinking day. In other words, I removed soda and desserts almost completely, and it took about 2 weeks or less for the attacks to go away forever. It seems like a small sacrifice compared to the pain I used to be in. I still follow the diet, as I NEVER want a CH again. Hope this helps someone.

email = arkumick@aol.com
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Ben

(Member)
From:
324 total posts
Currently suffering :(
Hi Stix Al,

In the interests of publishing accurate information for the benefit of users, I have obtained some publicly available information to be freely shared amongst users. There seems to be a distinct difference between the two conditions you have listed, you may have misread, misquoted or otherwise misunderstood the specifics of the article you mentioned.

Like I have said before - no-one yet fully understands CH or the mechanisms that trigger them, there may well be a link between CH and trans-sugars that is as yet undiscovered.

I am not dismissing the validity your claims, to the contrary - every CH sufferer has important insight and experience to offer. It is my personal belief that the more ideas and evidence put out there by CH patients, more avenues of investigation are made available to the medical profession. Then we might get some answers and treatments.
If it wasn't for people like yourself throwing new ideas around, we may never have made any of the major medical discoveries and advances of the last century.

So, please don't take this information personally. A copy or link to the original article would be of immense benefit to the discussion here. But as you mentioned - it is no longer available.

There is a significant difference between Hyper- and Hypo- in medical terminology. Knowing whether or not you are a Diabetic or have had pathology tests to rule out or confirm the presence of Diabetes would be helpful at this point.

Source wiki:

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

Hypoglycemia or hypoglycćmia (not to be confused with Hyperglycemia) is the medical term for a state produced by a lower than normal level of blood glucose. The term literally means "under-sweet blood" (Gr. υπογλυκαιμία, from hypo-, glykys, haima).

The most common forms of hypoglycemia occur as a complication of treatment of diabetes mellitus with insulin or oral medications. Hypoglycemia is less common in non-diabetic persons, but can occur at any age, from many causes. Among the causes are excessive insulin produced in the body (hyperinsulinemia), inborn errors of metabolism, medications and poisons, alcohol, hormone deficiencies, prolonged starvation, alterations of metabolism associated with infection, and organ failure.



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

Hyperglycemia, or high blood sugar, is a condition in which an excessive amount of glucose circulates in the blood plasma. The origin of the term is Greek: hyper-, meaning excessive; -glyc-, meaning sweet; and -emia, meaning "of the blood".

Diabetes mellitus

Chronic hyperglycemia that persists even in fasting states is most commonly caused by diabetes mellitus, and in fact chronic hyperglycemia is the defining characteristic of the disease. Intermittent hyperglycemia may be present in prediabetic states. Acute episodes of hyperglycemia without an obvious cause may indicate developing diabetes or a predisposition to the disorder.

END ARTICLE-------------------------------------------------------------------------------------------------



After extensive searches, I was unable to singularly locate any current article from Harvard that included both the terms "Cluster Headache" and "Hypoglycemia".

However, I did find a few mentions of this theory elsewhere. There is a growing body of anecdotal evidence to support your ideas. I apologise if you have already seen these links, or may have contributed to the original discussions contained therein.

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarc
hive2004
;action=display;num=1073166591

http://www.tudiabetes.org/forum/topics/crushing-headaches-due-to[/L
]


http://www.livestrong.com/article/92677-drugs-cluster-headaches/[/L
]


http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2001.01163.x
/full


It's a long read, but here is the International Headache Society's "International classification of Headache disorders". It may have a listing for a form of headache caused by abnormal sugar levels:

http://www.i-h-s.org/upload/ct_clas/ihc_II_main_no_print.pdf

I have never heard of any link between CH and blood sugar levels. But many Doctors and patients out there are far more qualified to speak on the subject than I. My blood sugar levels remain stable throughout CH phases and remissions. In my personal case, there is no established link. Had my blood sugar test results become erratic, I may have been able to pose the same questions that you have here.

I don't think it is a matter of anyone believing or trusting you. I know how this feels...I am more inclined to believe that people simply are not listening to you or taking what you have to say seriously. The medical profession and some people can be very quick to dismiss your ideas, to the detriment of all involved.

I hope this helps someone out there...

Cheers, Ben.
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