Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> cluster cure? you decide.
        
(Message started by: psychoal on Jan 11^th, 2004, 5:35pm)

Title: cluster cure? you decide.
Post by psychoal on Jan 11^th, 2004, 5:35pm

PLEASE READ: I have had severe, crippling Cluster Headaches for 20 years plus now. Always behind the left eye. I've been to countless doctors and have tried countless remedies and drugs, with only temporary relief, or in most cases, no relief at all. I have had ALL tests imaginable, and I'm perfectly normal according to doctors. I've spent alot of money on a handful of witch-doctor-type remedies because I was so desperate, that I would try anything. I have even written a song entitled "Cluster" with help from the band that I'm in, which I will post as soon as it's mastered. If I have any words of advice that could only help and not hurt a thing to try, PLEASE READ THIS WEBSITE PAGE!!!! The link is: http://neuro-www.mgh.harvard.edu/neurowebforum/HeadacheArticles/1.11.9712.54AMClusterHeadacheC (or search for "cluster cure"). It refers to hypoglycemia and clusters. I tried cutting most sugars from my diet, and in approx 2-3 weeks, I am now totally free of my cycle!!! I am also no longer in need of my medication (Relpax) whatsoever!! I had no idea that I consumed that much sugar! I thought I was normal by having a few sodas each day and a dessert after each meal, etc. However, after researching the symptoms of hypoglycemia, I was shocked to find that I had 90% of the symptoms of a hypoglycemic. I really think that they are onto something, and like I said, other than a little discomfort from missing a dessert or 2, or the unpleasant taste of a few diet sodas, what's it gonna hurt to try it for a couple of weeks. My belief is that my body took a couple of weeks to get adjusted to the new sugar levels, and now they have leveled off and returned to normal. I believe that all I have to do is try to continue to keep my sugar intake as low as possible (without going crazy cuz it's hard when you love sweets as much as I do!) and I will be cluster-free. This is after 20 years of suffering intense daily pain, with only a couple of breaks in between cycles. It impressed me so much, I had to post it. peace and good luck. al kumick.

Title: Re: cluster cure? you decide.
Post by AlienSpaceGuy on Jan 11^th, 2004, 6:43pm

HUH ?!?

Title: Re: cluster cure? you decide.
Post by forgetfulnot on Jan 11^th, 2004, 6:48pm

I am truly glad that this regimen helped this fellow, however for this to be a cure for cluster headache one would have to assume that all clusterheads are hypoglycemic. Something tells me that is just not the case. I have had my blood sugar tested at least 40 times over the last 10 years ( because diabetes runs in my family) and it was normal every time. Clusterhead for twenty years, not hypoglycemic.

Lee

PS. How many refined carbs in a budwiser? I can't read the can anymore.

Title: Re: cluster cure? you decide.
Post by pubgirl on Jan 11^th, 2004, 6:50pm

Gosh, the second time in two days I have to be sarcastic.

All these millions of £'s and $'s wasted on pointless research.

More oxygen and less sugar and we're cured.

That's good then. I can stop worrying now.

Wendy

P.S. I AM open minded to new ideas but PURLEEEZE!

Modified :
Psychoal, I'm sure you mean to help, but from your posts it appears your last bad cycle was Feb 2003.

Could I respectfully suggest that as an epsiodic, you just haven't had another cycle yet.

I would think for it to be a genuine cure, most of us would want to hear that you had been pain free for more than 11 months

Wendy

Title: Re: cluster cure? you decide.
Post by psychoal on Jan 11^th, 2004, 9:09pm

Hey, I've spent thousands upon thousands of dollars, just to find out absolutely fricking nothing from ALL of the doctors and specialists that I've seen. All they have is an educated guess because cluster's are such a mystery. I know it seems too easy to be true, but maybe that's a good thing. I have been mostly chronic, but have had a couple of breaks in the last 5 years or so, which means they turned episodic. Yes, I'm just trying to help. I'll let ya know if I'm cluster-free in 7 years or whatever, I just thought that it couldn't frickin' hurt to try. Yes, I've posted other remedies that have helped me, such as Relpax and some neck injections that I had received, but these were just temporary remedies. So sorry for trying. I have NO idea why this has helped, or why it's related to the nerves in my left eye, I'm just telling you what happened and why. Sugars are in everything. Try it first, and if it doesn't help, then blast me for being an dumbass or whatever your negative self wants to call me. I believe in ufo's and aliens too, if you want some more material to make fun of. peace, al k.

Title: Re: cluster cure? you decide.
Post by t_h_b on Jan 11^th, 2004, 9:28pm

The Atkins diet is almost completely sugar-free: you eat protein and fat and almost zero carbohydrates. (It's a very unhealthy and unpleasant diet.) I did it for two months, and although I temporarily lost weight, it had no zero zip nada affect on my CH. I'm chronic and my sugars test normally as well. Low blood sugar can certainly cause headaches but I sincerely doubt that it's the cause of most peoples' CH.

Title: Re: cluster cure? you decide.
Post by forgetfulnot on Jan 11^th, 2004, 10:29pm

Quote:

Sugars are in everything

Most of what we eat is already a sugar (sucrose) or converted into glucose in the stomach, intestines, or liver or excreted. Therefore it is impossible to eliminate sugars as this is the only source of energy to the body. Can you reduce sugar intake ? Yes, don't eat. Can you eliminate sugar from your bloodstream ? No, you would die.

Lee

Title: Re: cluster cure? you decide.
Post by AlienSpaceGuy on Jan 12^th, 2004, 1:06am

on 01/11/04 at 21:09:58, psychoal wrote:

...I just thought that it couldn't frickin' hurt to try.

IMHO, it would. I won't give up the last bits of live quality on a recommendation that stands on such shoddy feed on a completely insecure ground.

This Nathan Wright from the link you gave must have jetted through the biochemistry lessons in half an hour!

Quote:

You may be HYPOGLYCEMIC! ... I recommend removing ALL sugars, refined foods, and highly refined carbohydrates from your diet.

Hypoglycaemia is an abnormally diminished concentration of glucose in the blood, a condition that usually only affects diabetes patients. How low blood sugar concentration can be helped by reducing sugar intake is beyond my grasp [smiley=confused.gif]

The stressing of the really bad refined carbohydrates shows that the author is an ardent reader of food supplement and wellness sites. IMNSHO, there is no difference at all whether consumed sugar is "good" or "bad", if it is "highly refined" or, as in brown sugar, still mixed with the dirt from the feet of those that stomped the pulp. Maybe the contaminations of brown sugar have some positive side effects, but it certainly has no effect on the amount of glucose absorbed, nor on the speed of its uptake.

Quote:

The idea is to stabilize and regulate your blood sugar.

In a healthy person this is done autonomously, a diabetic has a messed up blood sugar anyway.

Quote:

Your blood sugar drops to extreme levels. This starves the body for oxygen, and is detrimental to the nervous system. The optic nerves and capillaries near the optic nerves, are the weakest links; they are affected first.

Oxygen is transported by the hemoglobin of the red blood cells. Is there somewhere any trustworthy paper that shows a connection with blood sugar level ? And where can I read something about this "weakest link" ? And what has it to do with CH ?

This linked article was posted 1/11/97. If it is the long looked for "Cluster Headache Cure" why has it not gained more acceptance in over 6 years ?

Maybe because it contains such blatant nonsense as

Quote:

Alcohol - a highly refined carbohydrate - often sets off a cluster headache. This was another clue.

True, alcohol is an instant trigger for most clusterheads. Butt how can we trust a guy that calls every chemical compound of carbon, hydrogen an oxygen a "carbohydrate" ? In organic chemistry a carbohydrate is string of linked basic sugars, such a fructose; and each link of the chain contains a ring structure. Ethanol (the only consumable alcohol) has a linear structure, and it's properties (vasodilation for a clusterhead) are caused by the linear -COOH tail.

Sorry, but before I degrade my life style by a weird diet, I need some sound reasoning.

(BTW, have you read the follow up's to the post you quoted?)

Title: Re: cluster cure? you decide.
Post by ave on Jan 12^th, 2004, 4:29am

And, to round it off, there was a supporter posting on this medication board, some weeks ago, who stated that hubby got hos attacks as soon as his blood sugar went too far down.

As soon as he ate something the attacks stopped coming....

Right the opoosite.

I am glad something worked for you, psychoal, but don't you ever forget, the cluster is a wiley, wiley beast. Not easy to catch and always learning from his mistakes.

It is even money, even if this helped you this time, it won't the next time around.

Title: Re: cluster cure? you decide.
Post by MAugust on Jan 12^th, 2004, 8:47am

I am a hypoglycemic episodic cluster headache sufferer and while low blood sugar may trigger an attack during a cycle, it does not bother me at all during the 20-24 months I am out of cycle. I generally keep my processed sugar intake way low, but the occaisional sweet has never seemed to bother me.

Just sharing some data.

Title: Re: cluster cure? you decide.
Post by 5-string on Jan 12^th, 2004, 9:27am

Hey psychoal,
I understand what you're trying to get across. You found a "possible" connection between your clusters and your hypoglycemia and want to share this. Thank's.
I'm not hypoglycemic.I have no issues with sugars. I don't have a sweet tooth and don't drink soda.not even diet.
I thought at one point that the fact that I have a hypothyroid might be the cause of this terrible beast. I "posted" a question and found alot of people had the same thing.
We don't know what causes this yet.. It's not hypothyroid and it's not hypoglycemia by itself.
We don't have a cure yet..It's not synthroid and it's not cutting out the chocolate.
Sorry we sound like a bunch of synics, but alot of people have "THE ANSWER" and want to share.
Stick around. Post some questions. Maybe if you had posted a question about this issue back when you got the idea before gracing us with a cure,maybe people here would be more interested in what you have to say...
Take it easy,
...Mark..

Title: Re: cluster cure? you decide.
Post by floridian on Jan 12^th, 2004, 10:28am

Glad you found something that helps you. I believe that fluctuating blood sugar can be a trigger in some. I wouldn't call this "the cause" - but if it helps you, you might be tempted to call it a "cure" ... maybe "treatment" or "strategy" would be more medically correct. There have been other discussions on this topic recently, I won't repeat it all. I haven't tried a low carb diet before or during a cluster cycle, but since Thanksgiving, a low carb diet has controlled my hypoglycemia and panic disorder and upped my energy.

Quote:

Hypoglycaemia is an abnormally diminished concentration of glucose in the blood, a condition that usually only affects diabetes patients. How low blood sugar concentration can be helped by reducing sugar intake is beyond my grasp

Here's a link to a study from the Mayo clinic showing that a high fat, no starch diet is beneficial for people with hypoglycemia.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14601690&dopt=Abstract

It's not true that hypoglycemia is limited to diabetes sufferers. The most common form of hypoglycemia is caused by overproduction of insulin. Someone eats sugar or starches (which are converted to sugars) and the pancreas squirts out too much insulin. The excess of insulin keeps stimulating cells to take in sugars, and the blood sugar drops too low.

In mild hypoglycemia, switching from refined carbs (sugars) to starches may be enough to keep the pancreas from over responding. Starches are like time-released sugars, and may prevent the roller-coaster fluctuations some people get from sugars.

In more advanced cases of hypoglycemia, eliminating most carbohydrates and consuming fats and proteins may be needed. The old joke that Chinese food (mostly rice) can fill you up but makes you hungry in an hour demonstrates the carb/insulin fluctuation. Most Asians consume rice with tea, which partially blocks amylase (the enzyme converting starch to sugar). By slowing the conversion of rice to sugar, tea can prevent the over production of insulin and stabilize the blood sugar.

Quote:

Therefore it is impossible to eliminate sugars as this is the only source of energy to the body.

Not true. Fats can be converted to ketone bodies, which are an energy source. Sugar is good, but for some people, it should not be the primary energy source. A ketogenic diet has been shown to be useful in controlling obesity, metabolic syndrome, insulin resistance, some types of diabetes, epilepsy, and may help with cancer (http://www.nature.com/cgi-taf/DynaPage.taf?file=/bjc/journal/v89/n7/abs/6601269a.html)

Insulin is a hormone with many effects. In addition to the obvious role of regulating blood sugar, it stimulates cells to store fat, and it stimulates the liver to produce cholesterol. Insulin is also linked to some of the bad actors in CH - this could explain a link between diet and CH.

Quote:

Trends Immunol. 2004 Jan;25(1):4-7.
Inflammation: the link between insulin resistance, obesity and diabetes.

Recent data have revealed that the plasma concentration of inflammatory mediators, such as tumour necrosis factor-alpha (TNF-alpha) and interleukin-6 (IL-6), is increased in the insulin resistant states of obesity and type 2 diabetes ... inflammation. Firstly, glucose and macronutrient intake causes oxidative stress and inflammatory changes. Chronic overnutrition (obesity) might thus be a proinflammatory state with oxidative stress. Secondly, the increased concentrations of TNF-alpha and IL-6, associated with obesity and type 2 diabetes, might interfere with insulin action by suppressing insulin signal transduction... .

Quote:

The abnormal production of tumor necrosis factor alpha (TNF-alpha) in obesity is a paradigm for the metabolic significance of this inflammatory response. When TNF-alpha activity is blocked in obesity, either biochemically or genetically, the result is improved insulin sensitivity.

Inflammatory pathways and insulin action.
Int J Obes Relat Metab Disord. 2003 Dec;27 Suppl 3:S53-5.

It seems like insulin resistance and inflammation are consequences of obesity (and not the cause) but once the cycle starts, there may be feedback where everything aggravates everything.

Quote:

(It's a very unhealthy and unpleasant diet.) (Atkin's)

Low carb diets aren't for every one - some people just don't have the metabolism for it. Any diet that involves calorie reduction can cause a drop in energy levels and focus. And to lose weight, you have to have an energy deficit and burn your own fat. Atkins' has a brief "induction" period that may be too extreme for some people. Other low carb diets (the zone, south beach, protein power) may be better for some people. I actually felt better on a low carb diet from day one (hey, but I'm not normal to begin with). And most people don't need a 100% carb free diet to benefit from carb reduction.

This study from Washington University found that a low carb diet was superior for lowering weight, cholesterol and triglcerides compared to the traditional low fat/high carb diet, although after a year, none of the diets was effective (probably because people didn't stick with them). http://record.wustl.edu/web/page/normal/793.html

Title: Re: cluster cure? you decide.
Post by HannahFroukje on Jan 12^th, 2004, 10:36am

on 01/11/04 at 18:50:11, pubgirl wrote:

He didn't say "WE" , he said "I".

Title: Re: cluster cure? you decide.
Post by Mikey on Jan 12^th, 2004, 11:33am

I'm on the Atkins diet, and still chronic and hurtin like hell!!!! So it hasn't helped me none!!!!!!!!!!!

Mikey,

Title: Re: cluster cure? you decide.
Post by HypnoticFreddy on Jan 12^th, 2004, 12:02pm

Ethanol does not have a COOH tail. That would make ethanol a carboxylic acid, to which it is not. Alcohols all have the general formula ROH, where R=linear, branched or cyclic hydrocarbons (C-H bonds). Just though I'd clarify.

-Scott

Title: Re: cluster cure? you decide.
Post by floridian on Jan 12^th, 2004, 1:31pm

Alcohol works as a trigger by increasing nitric oxide production, which expands blood vessels, which pinch nerves. This is different from the metabolic effects of sugars and starches. Alcohol's effect is direct and dramatic; the role of other carbs (if any) would probably be less direct.

H H
H C C 0 H
H H

How's that for ethanol inspired ascii art? Haven't done that in a while.

Title: Re: cluster cure? you decide.
Post by pubgirl on Jan 12^th, 2004, 2:09pm

Hannah

If you want to argue semantics which isn't really the point of the site, I said "I" as well!

Wendy

Title: Re: cluster cure? you decide.
Post by psychoal on Jan 13^th, 2004, 10:06am

Sorry I had to step back for a day. I have a hard time with stress, and the 1st couple of responses (HUH? PURLEEZ, etc!) got to me. I know my body pretty well now, but until recently, didn't know anything about hypoglycemia. The doctors have tested me for practically everything but they missed tesing my blood sugar. Upon reading the hypoglycemic symptoms such as feeling weak, drowsy, confused, hungry, and dizzy, paleness, headache, irritability, trembling, sweating, rapid heart beat, and a cold, clammy feeling, not to mention blackouts, I realized I had ALL the symptoms. Over the past 20 years, I didn't know why I had blackout episodes, which happened to freak me out pretty good. Now I know why! But I didn't know that there was a correlation until reading Nathan's article. So I tried it. My headache cycle started to slowly disappear, but if I got desperate for sweets, I could trigger an attack shortly after finishing (within the hour). So I kept the sugar intake to minimum, and now my cycle disappeared totally. However, even if I have a sweet now, I can feel it coursing through my body, and it causes a mild shadowing effect, but doesn't push through to an attack. My dizziness and blackout scenario has totally stopped now, which was another cause for me to get so excited. I'm also a binge drinker, so I was pretty sure that my sugar levels were messed up from that, or at least it made perfect sense to me. I understand that my cycle may have dissipated on it's own, but it SURE didn't react that way, like a typical cycle ending. And in my only defense, I have SO much empathy for the other cluster sufferers on this planet, I got a little trigger happy by posting it so quickly, without testing my theory over a long period. The reason I did that is because out of all the doctors that I've seen etc, I had NEVER been presented with such a logical theory as this. So yes, I got REALLY excited. Thank you for your posts though. Just in case this theory stops working, I happen to be currently filing for disability. I figure if our government gets enough cluster sufferers on their "pay out" list, maybe they'll start taking it seriously and put more effort and monies into cluster research. Good luck ALL, peace, al.

Title: Re: cluster cure? you decide.
Post by HannahFroukje on Jan 13^th, 2004, 3:04pm

on 01/12/04 at 14:09:58, pubgirl wrote:

Hannah

If you want to argue semantics which isn't really the point of the site, I said "I" as well!

Wendy

It wasn't about semantics at all.
I find that if someone finds a solution for himself and wants to share that, perhaps hoping somebody else can try it too, you can be really discouraged by some reactions. That's what I mean.

Look at the aromatherapy thread. Exactly the same. You would get tired of sharing something that helped .... and perhaps it's just the thing you NEED!

Let's face it, and we DO face it: all clusterheads are different. One is helped by eating , others by avoiding exactly the same. But that doesn't mean we should stop SHARING what helped for us?!?!

Title: Re: cluster cure? you decide.
Post by HannahFroukje on Jan 13^th, 2004, 3:11pm

on 01/11/04 at 22:29:02, forgetfulnot wrote:

Glucoses as a substance is important for your brain, because the brain needs glucoses. Your other cells can do without, they can live on fat, or if they must live on amino acids (though that gives a lot of mess in your body). Lucky for us we are blessed with a highly developed machine that can build and rebuild these molecules into the stuff we need. You can live perfectly well on a diet with no sugars, you can just make your own!

And sucroses is absolutely not the same as glucoses and fructoses. Sucroses sends your bloodsugar in orbit! I know .... because I'm pretty sensitive to sucroses, so one sweet cuppa coffee will send me spinning around for some time. To me it's not very hard to imagine that sucroses can be a serious trigger; we tried it too , to avoid sugar, for that reason. Only to find out that for Jos obviously it was of no importance. But that doesn't mean it could help others to avoid sugar.

And why not, it's worth a try. If it doesn't help, it doesn't help.

Title: Re: cluster cure? you decide.
Post by floridian on Jan 13^th, 2004, 3:38pm

Quote:

Sugar is not required for human life. Some groups of people (Eskimo, Innuit) live entirely on meat and fish. One arctic explorer (Norsk or Icelandic) lived for a year without any plant food just to prove it could be done - he was healthy at the end of the year. Granted, there are lots of good things that come from plants, and I am not reccomending such extreme diets. But it is possible.

Protein and fat are metabolically required; carbohydrates are optional. The brain can metabolize ketones, which come from fat.

Quote:

Brain cells are metabolically flexible because they can derive energy from both glucose and ketone bodies (acetoacetate and beta-hydroxybutyrate). ...

J Neurochem. ; 86(3): 529-37. Perspectives on the metabolic management of epilepsy through dietary reduction of glucose and elevation of ketone bodies.

You are right that the different sugars have very different effects on the body. Fructose is being pushed in the US, because it does not trigger insulin (and because it is less expensive). But many people (including me) are fructose intolerant - that sugar is not absorbed from the gut, and bacteria ferment it (causing gas and other more serious problems). Fructose intolerance also lowers tryptophan in the blood, which messes up serotonin and melatonin production. Others can handle fructose no problem, but have a bad time with lactose, sucrose, or sugars in general.

And when people get metabolic syndrome, they have started a slide towards diabetes; a high carb diet will only keep them sliding that way. I think metabolic syndrome may trigger or aggravate some people's clusters - though there is no evidence it is the root cause.

Metabolic syndrome: any 3 of these: (glucose intolerance; central obesity (apple shape for men); low HDL cholesterol; high total cholesterol; high triglycerides; high blood pressure). Metabolic syndrome is also associated with non-cardiac chest pain ... the pain is real, but no cause can be found with angiograms or other tests.

Title: Re: cluster cure? you decide.
Post by t_h_b on Jan 13^th, 2004, 6:32pm

psychoal,

Quote:

Upon reading the hypoglycemic symptoms such as feeling weak, drowsy, confused, hungry, and dizzy, paleness, headache, irritability, trembling, sweating, rapid heart beat, and a cold, clammy feeling, not to mention blackouts, I realized I had ALL the symptoms. Over the past 20 years, I didn't know why I had blackout episodes, which happened to freak me out pretty good. Now I know why!

I am shocked that your MDs missed those symptoms for 20 years. Any nurse would have recognized them instantly if they had observed them.

Whatever kind of headaches you have, and whatever it is that you have found that works to prevent them, congratulations on that success.

The important thing is to not suffer.

Title: Re: cluster cure? you decide.
Post by henzey on Jan 13^th, 2004, 10:52pm

Based on talking with at least 10 other CHeads over the years, I think that many (but not) all of us have different food sensitivities that make our headaches somewhat worse or better. A very few have found that diet alone will keep the clusters away....but may reduce the numbers or severity of them. The pity is that research has done very little on this. I sure hope that Psychoal finds that his headaches never come back, but they probably will. They just may not come back as often or as badly....we hope that he will stay in touch and let us know. I do know that sugar (refined or otherwise) has almost NO impact on my headaches as I don't consume much of this anyway for other reasons. Instead, I have to stay away from the typical list of candidates...alcohol, aged cheese in large quantities, lots of MSG...until the episode is over.

Title: Re: cluster cure? you decide.
Post by pubgirl on Jan 14^th, 2004, 8:53pm

Psychoal

Please accept my apologies. My sarcasm was unnecessary.
I don't personally believe you have lit upon the cure for all, but I am delighted it works for you.

I wish you continued PF times

Wendy

Title: Re: cluster cure? you decide.
Post by psychoal on Jan 15^th, 2004, 3:26am

I'd like to start over if possible....Hi my name is Psycho Al, and in my 20 yrs as a C-head, I've had some odd luck on a whim from a website I found recently.
I've had limited chat/post experience, and what I had experienced in the past was mad-negative, but now, I have a total grasp on where everyone's coming from. I promise to keep you posted on my progress.

Title: Re: cluster cure? you decide.
Post by psychoal on Jan 15^th, 2004, 3:43am

And yes, I've never been tested or diagnosed regarding blood sugars. I've had every other test under the sun, except. I've even mentioned to docs about thinking that it was odd, or a correlation between my clusters and my dizzy/blackout spells, but nuttin' ??shuuhhh. Anyways, I saw my neurologist today and after telling of my new experience, all I was told was to see a primary physician for testing, but nothing else. I would have loved an opinion, but jeeez, I shouldn't be so neeeedy!!! I'd much rather pay you all by far!!!! I'll keep ya posted!! peace, psycho al.