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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Some ideas from CH suffer
        
(Message started by: Vlad on Feb 6^th, 2007, 6:28pm)

Title: Some ideas from CH suffer
Post by Vlad on Feb 6^th, 2007, 6:28pm

I am new to this board, but have some things that I noticed that may help others. I have CH for 5 years with basically no breaks. It is what called chronic headache, which started like this, form and continue in the most severe form anyone can imagine. However, I noticed some things that allow me to manage this beast.
I am agree on all triggers mentioned, so no news will be in this area. Most effective drugs for me were verapamil and oxygen, but they do not go to the roots of the problem.
Recently I came up with idea that needs to be proven yet, but anyone can try and tell results here. I feel if it helps single person it worth it. I know too well what we all experience during these events. I was at the point to end these sufferings once at for all several times during these years… Anyways, here it is.
My idea is that actual problem is in sleep disorder, not in other areas. What triggers sleepiness or not deep sleep could be anything. Person condition, carving for food or nicotine, worries about family or job or career - you name it. What is considered most common is that only certain type of personality suffers from CH. Mostly responsible people with a lot of stress. But then during the night or in the middle of the day you get hit. What helps – is relaxation, exercise, valeriana. Valeriana if anione doesn’t know is plant and sold in the form of tablets or liquid that sold widely especially in Europe. I have Swedish made, but saw different types What is bad is that most light sleep medications stops working after certain time (at least in my case). Basically my assumption is what we need is deep sleep and change in attitude. Everyone can select how to achieve that in his/her case. Change life stile or exercise anything that will bring deep good sleep. It always worked for me, but short lived – natural sleep medications stop working and I get all my worries again and CH comes right away. No much time to exercise either. What I try to prove or disprove is that this is basically psychology problem, not a neurological one. Anyone tried or noticed anything like this?? Any ideas???

Title: Re: Some ideas from CH suffer
Post by Guiseppi on Feb 6^th, 2007, 6:55pm

I think the majority opinion to this point says it's a problem with the hypothalamus. What you are trying is very similar to the people who use the melatonin..(sp?) to avoid the hits that happen right after you fall asleep. While a useful tool in avoiding night hits, I certainly don't recommend it as an all inclusive treatment for the beast.

For many of us relaxation is strictly taboo. As soon as you start to relax you get hit. You'll notice many peoples' tag lines say "Never Relax!"

Welcome to the board. We certainly welcome input and even the wildest suggestions are sometimes worth a try. I'd strongly advise you to do a lot of reading on the left hand side and see if we have any treatment suggestions you haven't tried yet. Many of us have found near miraculous relief with oxygen and there are many preventatives you might want to look at. Again welcome to the board and I do hope you find something here to help you!

Guiseppi

Title: Re: Some ideas from CH suffer
Post by Vlad on Feb 6^th, 2007, 7:57pm

I got a lot of info on this board and sure I will read more. I suspect I wasn't clear. My point was, not to take something to get better sleep and avoid nighttime event. My point was to change attitude and/or lifestyle or occupation or how we accepting life so that it doesn't affect sleep. What I noticed if I physically (not mentally) tired like after riding bike for several hours or digging long trenches I do not get night CH event and do not get it next couple of days. I have to admit I am very severe suffer and normally I get several night/day events. Also, if I really occupied with small project or something like short-term goal and do not think or worry about big life picture much I get 1) no daytime CH event and 2) no nighttime CH event. I also sleep what seems to be 3) deeper and better feel 4) much better in the morning and during the day. Therefore, I started to suspect CH relates my general nervous system condition and sleep disorder based on this condition. Anyone can test how really physical job (the one that helps to sleep better) affects CH and give some feedback on that. At least it shouldn’t hurt anyone, but the chances it might help like in my case. I just can’t figure out how to make it work for me long time as I have to change occupation, lifestyle and the way I see the life around me…

Title: Re: Some ideas from CH suffer
Post by Redd715 on Feb 6^th, 2007, 8:22pm

Vlad,

For some sufferers there is the ability to abort a hit with excersize, and for others( such as myself) over exhersion can and usually does trigger an attack.

The theory that CH is a psychological issue has been pretty well put to rest as bogus by Dr. Goadsby who has found that the hypothalamus of a CH sufferer is formed different from birth.

The full mechanism as to exactly how this creates the full blown CH attacks is still unknown, but knowing that the hypothalamus is also the body's internal clock and this is why so many of the CH attacks can be predicted because they come at the same times, is logical. But to still suggest this a psychological disorder would be akin to treating dientary with leaches.

Title: Re: Some ideas from CH suffer
Post by Vlad on Feb 6^th, 2007, 8:41pm

OK, it makes sense. However, knowing hypothalamus is to blame doesn't help to find cure and can't explain why some people get rid of CH if person was born with it. CH is not very common, but I personally know the guy who suffered for 25 years. Then he got rid of this problem. He usually explains that this happened because he started using verapamil, and slowly decreased the dose and stopped taking it. But that is what all of us tried! My personal opinion is this. Carefully looking at what makes him different is that exactly at that time he moved from one country to another, got married and changed his life stile completely including different occupation, got rid of many problems he had and got completely financially independent. So I do not know about the role hypothalamus plays in all of that... [smiley=laugh.gif] but lets be open to anything new!!

Title: Re: Some ideas from CH suffer
Post by BB on Feb 6^th, 2007, 8:47pm

Its more likely that CH with all its side effects such as severe recurrent pain that ruins life, lack of sleep, fear of the next hit, loss of job, broken relationships because people cant cope with it , etc is more likely to be causing the psychological problems seen in people with CH.

That said! Changing lifestyle, becoming physically fit, stop smoking, eat and sleep well, develop a good mental attitude .... will do anyone good, CHers included. But to say that as long as you can do that you will be cured from CH will set you up for disappointment.

CH is caused by a malfunctioned hypothalamus which then produces abnormal amount/level of neurotransmitters such as serotonin and noradrenaline. This chemical/neurological event occurs automatically in your brain without you being aware and no amount of psychological preparation will be able to stop it.

One can be psychologically prepared to cope better though.

Best of luck and painfree wishes to you.

Annette

Title: Re: Some ideas from CH suffer
Post by BB on Feb 6^th, 2007, 8:54pm

on 02/06/07 at 20:41:33, Vlad wrote:

How do you know that he has gotten rid of the problem? He may just be in a long remission, good luck to him.

There are people here whose CH just suddenly stopped, but then after a certain amount of time, it suddenly started again too.

So far, there is no documentation worldwide that anyone has been "cured" from CH, by any mean as yet, apart from maybe old age. ( Actually our dear DJ maybe the only person, but that is after very risky brain surgery for another rare condition ).

What you need to do is to keep in touch with your friend and follow him up long term, and see how many years he would still remain CH free. If he doesnt get CH again until the day he dies then you can safely say that whatever he did cured his CH.

Still, I am all for healthy lifestyle and healthy mental attitude though :)

Annette

Title: Re: Some ideas from CH suffer
Post by Vlad on Feb 6^th, 2007, 10:17pm

Annette,
The reason I tried to connect what my friend had and what he has now and what led to it is that it was in fact long time ago.
He had CH for 25 years several times a week. Then, like I said, he got financially well, moved to US from another country, got married second time, had kids. He also did not have to work or care about job much after that move. At the same time they started finally treat him with verapamil. He got to the dose (I think 240 twice a day) and CH was gone. After several months he started to lowering dose until fully stop taking it. No return of CH. This was about 15 years ago. Now he is still OK, no return. Coincident? Maybe. I do not know for sure. I just try to see pattern here. I also noticed in his and mine case CH started under huge stress and family problems that sure totally occupied his and mine mind. I also try to see (like I am sure everybody else) what affect my case, triggers, releive etc. It seems being many things in common, there are also some individual things in symptoms and reaction to treatment/triggers. In his case it seems like CH had gone completely or at least for 15 year… I would still consider it completely gone after that time. I wish I had several years remission. Currently I have no any breaks with exception of days that I mentioned when I get physically tired working outside or occupied with something I consider unimportant, but what takes all my attention. Everybody tries to find something that works for her/him and willing to try what everybody else did that help at least a bit.

Title: Re: Some ideas from CH suffer
Post by Vlad on Feb 6^th, 2007, 10:32pm

P.S. Forgot to add. I have a trigger that I didn't see in other posts (may be didn't look all through yet). Along with common triggers such as alcohol etc I have another one. If I go to bed late (after 11PM and later) I will get night CH event for sure. If I go before 11, then night most likely will be OK, but next day still in question. Also timing of meal is important. Basically in my case if I go and do everything by the clocks, I decrease chances dramatically.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 7^th, 2007, 1:01pm

It is a problem with the hypothalamus, and I believe it is also a sleep disorder. There is no other way to account for the HA's striking people at onset of REM sleep. Something is not working right with the sleep mechanism.
I have recommended exercise on here--recently beginning of December I had cycle coming on forced myself to walk 4 miles a day even though I was exhausted from no sleep, cycle never progressed past shadows and shadows ceased. I have never shadowed outside of cycle--it was a cycle coming on, normally they hit me with no warning though and then it is too late. It is most certainly a sleep disorder, and anything which can deepen sleep is extremely helpful. I get hit during REM sometimes 6 times per night--the key is too deepen sleep in some natural way--I take 6 mg melatonin per night. Star

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 7^th, 2007, 1:07pm

Also, some people fear relaxing--and I understand that--I get hit when I "relax" during cycle and sometimes that actually brings cycle on--relaxing after great stress, but the thing is is that the mind is not calm even when relaxing, it is like thoughts are going too fast all the time and when relaxing it is just that I think the mind can't relax itself effectively--it is like a "busy, busy" mind just "shuts down" and brings on CH. Exercise calms the mind--I walk a lot and after about three miles you feel something "click" and your mind stops thinking mostly and just feels very slowed down and very calm. I think yes I agree stress is definitely a factor. The key is to calm the mind, don't fear relaxing but do it through exercise, meditation, massage (foot massage--sometimes this works).

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 7^th, 2007, 1:15pm

Here's an analogy: Think of sleep as being something that has gotten tightly wound slowly and soothingly unravelling, like a spool of thread. With CH, the thread has gotten tangled too tight during the day, when the CHer goes to sleep the thread does not unravel soothing and slowly, rather since the thread is wound too tightly and tangled when it tries to unwind it snaps bringing on the headache. I have had these for 20 years (although episodic)--I believe this is what is happening is a breakdown in the sleep structure. It may be that those of us with Cluster headache think too much--exercise slows the mind. Sorry if the analogy sounds strange, but I feel that is what is happening.

Title: Re: Some ideas from CH suffer
Post by LeeS on Feb 7^th, 2007, 1:22pm

Have you been on those entheogens star? [smiley=laugh.gif]

(That's a joke btw)

I agree that sleep plays a fundamental role in the pathophysiology of CH, but I think it's much more complex than that.

Are you any good at foot massage? :D

-Lee

Title: Re: Some ideas from CH suffer
Post by georgej on Feb 7^th, 2007, 1:38pm

on 02/07/07 at 13:22:47, LeeS wrote:

Are you any good at foot massage? :D

-Lee

Star, you truly don't want to answer that question.
:-X

George

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 7^th, 2007, 3:07pm

Hey Lee,

I think I'm on something. Well, with the foot massage thing, I'm very selfish with foot massages--I'm always like...me...me...me...here massage my damn foot. So you're out of luck babe!!!! Take care, Star

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 7^th, 2007, 3:13pm

All foot humor aside, massage is very good for CH people. So Lee I hope you can get a foot massage very soon. Star

Title: Re: Some ideas from CH suffer
Post by JeffB on Feb 7^th, 2007, 4:07pm

So I guess I have to quit my job, make more money, change my life style, and get a foot massage and I will never suffer another ch again?

Wow, you smart guy.

Title: Re: Some ideas from CH suffer
Post by Vlad on Feb 7^th, 2007, 6:18pm

starlight,
You said exactly what I meant. I couldn't say it better. What I said relaxing, what I actually meant is to free your mind. It is no secret CH occur only with people with certain mind set, certain temperament certain view of life and sharp feel of responsibility. Or at the time they try and can’t change something important in their life or just at important moments of their life. I am not trying to find how to ease CH itself when it hits. It is individual and well known. I am trying to get to fundamentals, to see what it all came from. This theory of hypothalamus is what we have to blame sounds like it was given and kind of manufacturing defect. Therefore it makes most of us to try to find how to treat rather then what is the cause. I am not ready to accept this way and think this way. Lets look at the picture. Several people bought different models cars. They all experienced similar looking problem but slightly different at the diagnostic stand. One breaks after 13 yeas of use. One broke at 40. One broke at 25 and fixed back to normal at 45. One goes broken and then fixes itself in a cycle. And the last one never broke at all. Now mechanics say it was manufacturing defect. Something was not made right at the factory. What I think is after 13, 25 and 40 years of use it is more like user or usage problem than manufacturing defect. Sure something maybe could be assembled better, but some usage problem contributed to the defect to came out. Basically something did trigger the chain of reaction. I am on the mission to find out what is that trigger or several triggers that together produced that result. Just for the note. With me it started at 40 and I do not have cycles. I also can put it this way - I am always in cycle. And now somebody says to me that what I got at 40 was manufacturing defect? How then some people got it fixed back by itself? Something has to contribute to breakage and something should contribute to healing back. Sure it could be the thinnest element that broke, not very well made, during 40 years of usage it served me right somehow. Therefore I am hesitant to say it was not made to the right specs… Would anybody complain on the device that served that many years? Thus, I am more interested is to find what led to breakage and how to fix back. Collecting the statistic what helps and what triggers and what affect this thing is I believe the only way to get it fixed. I carefully notice what affect my condition time, day, my occupation at that time, my thoughts, my nervous condition and that’s how I came up with sleep disorder version. Mind is actually what to blame. It is not free even when we think it is relaxing. Changing state of mind is the key. This is just my version, which needs to be proved or disproved. If it is true, it may make great number of people happy. Also, even CH may look similar, it may have different case with different people and different version of this beast may have different nature. It may not be reason for every CH sufferer.

Title: Re: Some ideas from CH suffer
Post by kcopelin on Feb 7^th, 2007, 6:28pm

Ahhhh, I see. So, we are born with dicey hypothalymus (or is the plural hypothalumice?) but they malfunction at various times in our lives based on user error.
Well, lets see, hmmm, this is one of those times when I really miss Floridian. I'm sure he coulda found an obscure study on this.
At any rate,
PFDAN y'all
kathy

Title: Re: Some ideas from CH suffer
Post by JeffB on Feb 7^th, 2007, 7:15pm

on 02/07/07 at 18:18:23, Vlad wrote:

I wish I had my bullshit meter working.
Sorry friend, I think your theory sucks.

Title: Re: Some ideas from CH suffer
Post by Vlad on Feb 7^th, 2007, 7:28pm

What would be other versions? How to explain real life statistics based on hypothalamus theory and so that explanation would not look fishy? Something else should be adding to wrong hypothalamus to get what we all have. It seems to be more complex than just one wrong part. Otherwise we get this: We all born with out of spec hypothalamus and pre-programmed to break at certain edge and some of us are even pre-programmed to be fixed at certain time. For some reasons it doesn’t sound right to me. Also, what is much worth that it automatically brings this conclusion: Nothing can be really done, everything pre-programmed and all we can do is looking to the ways to ease suffering during the event.

Title: Re: Some ideas from CH suffer
Post by JeffB on Feb 7^th, 2007, 7:35pm

I can tell you really want your theory to be accurate but I can't understand why. Not all of us are in bad situations or have money issues. The one thing that most of us have in common is command of the english language which is some thing I question regarding your post.
BB, made a valid point in saying your friend may be in remission and has stayed that way, I myself went 5 years pain free before they returned. But I am not buying into thinking it's all in my mind or I am some how making myself have these things.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 7^th, 2007, 10:02pm

Vlad,

I am pretty much in 100% agreement with you. And I have said it on these boards before. I have asked the very same question you are asking--but I like how you stated it. I started getting these at age 14 years. How come the hypothalamus worked just fine till then? How come for others as you stated till 35 or 40 or even 60? I know the theory--born with crap hypothalamus and then hormones kick in--I don't buy it, not totally. How come if hormones kick in why for some does it take till they are 27, 32, 35, 46, 62? Exacty as you stated, no intelligent person can just BRUSH over that question--are we preprogrammed for it to break at a certain age? And then, even more mysteriously, for most (the episodics) fix itself between cycles? And even some chronics get "fixed" in that they go episodic? Sure the problem lies with the hypothalamus but I am first to admit I have a heightened sense of responsibility, I THINK a lot (probably too much), I have other bad habits of mind. I have had these for 20 years, they hit me at night, I have started paying attention over the years, in cycle it is like I am still "thinking" while I am sleeping, and no I don't mean just dreaming, I will be dreaming and thinking--that's not normal (no pot shots please). That's a very overstimulated mind and nervous system. I think the key is to somehow relax the mind. That statement in and of itself should not provoke tons of angry responses. I am not denying we are vulnerable to CH, that there may very well be inherent defects in the hypothalamus, but the painfree years preceding onset of CH BEG the question WHAT BROUGHT THEM ON IN THE FIRST PLACE? I am not claiming to know the answer. My only claim is that yes we need to try to take our own power back and not accept the CH sentence--my advice is if someone gets CH they need to try to relax the mind.
People are entitled to their opinions, but I do promise you that foot massage has
given me some painfree nights, exercise helps, and I do not totally believe I was born with a messed up hypothalamus. It has occurred to me the question if they have seen this additional grey matter around the hypothalmus on the scans of CH person, who is to say that CH itself did not cause this additional grey matter? That seems perfectly plausible to me. EVeryone is entitiled to their opinion but I have learned to change my mindset in some ways to try to fend off these headaches.

Title: Re: Some ideas from CH suffer
Post by Vlad on Feb 7^th, 2007, 10:14pm

Thanks anyways for replies. Everybody can have opinions. Ironically I am proud to have few posts of the same type of argument (BS etc) Einstein had when first published his theory. Also if you are native speaker nothing to be proud of if you speak that only language well. There is no hard work involved in that case and it is not a personal achievement. It is just shows ignorance and also shows person knows only one language and never tried to learn any other. So one can’t appreciate other people hard work learning at least to the point being understood. People who know several foreign languages always know what it takes. From my experience they are more forgiving to others achievements in that area. There is no need to label this theory as wrong, BS etc. Anyone just can apply it to himself or herself and see it works and find ways to fix problem. It definitely can’t hurt. I will be trying checking my theory on myself with some hope. My only idea was to share these thoughts about my case in hope it might help some other suffers with similar cases. It is just reason to look back, analyze and to think. It is also great if you can prove I am wrong or provide reasonable counterarguments or disagree and say why. If you have nothing meaningful to say or add, no need to push yourself. Just close this topic then. That’s all. Like I already said I currently believe it all comes from state of mind. Clear mind (which is the most difficult thing) and see what happens. Good luck and PF to everyone!

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 7^th, 2007, 10:17pm

Jeff,

I read what you wrote to Vlad--I just wanted to say I would NEVER say that a person is making themselves have these things. What I think is that a very overstimulated nervous system does plays a role, and that is absolutely not something a person consciously "does" to his or herself. Just wanted to clarify my feelings on that. Star

Title: Re: Some ideas from CH suffer
Post by Vlad on Feb 7^th, 2007, 11:02pm

Star, that's what I also meant. Nervous system plays a role. I would say major role. If I was understood differently I was not clear. I never meant to say things are done to the people by those people. Circumstances or our life was treating us or whatever it was triggered chain of reaction. If we assume we make our life or at least responsible to how our life goes and how we react to it, then yes, we kind of make this to themselves. But not directly. Not everything depends on us, it is how we are wired. This is our reaction to the life events and we can't control it. Or can we? Can we learn to react differently and look differently on the things happening around us. I had meditation/sociology session today. I am learning... After talking to me the guy said it is constant work to change my state of mind and I have a long way to learn and long way to change. His idea was even when I know how to do it and condition is gone, I should keep doing it on a regular basis (on my own) otherwise my condition (overstimulating nervous system like star called it) may return with all CH associated with it.

Title: Re: Some ideas from CH suffer
Post by alienspacebabe on Feb 7^th, 2007, 11:20pm

on 02/07/07 at 18:18:23, Vlad wrote:

It is no secret CH occur only with people with certain mind set, certain temperament certain view of life and sharp feel of responsibility.

Mind is actually what to blame. It is not free even when we think it is relaxing. Changing state of mind is the key.

So, if I understand this correctly:
my CH is my fault because of
1. my mindset,
2. my temperament,
3. my view of life,
4. and a sharp sense of responsibility?

So I must:
1. become self-centered, viewing the world as revolving around me?
2. change from fiery to cool?
3. become a pessimist?
4. become irresponsible?

If I have to become a pessimist to cure my CH, what does someone who's already a pessimist have to do to cure his/her CH?

And what about a CHer who has multiple personalities? :)

So, Vlad, my mind is at fault - if I can just change my state of mind, I can cure my CH. ::)

Title: Re: Some ideas from CH suffer
Post by Wilbur on Feb 7^th, 2007, 11:34pm

Vlad - fsshhhht!

I just dog whispered you.

Title: Re: Some ideas from CH suffer
Post by BB on Feb 8^th, 2007, 2:39am

Hi Vlad,

I am interested to learn HOW you are going to apply/test your own theory on yourself.

Please explain the exact steps you are taking to change your mindset and lifestyle. Maybe then we can all learn something ?

Theories always sound great but most dont work in real life. Look at the Karl Marx 's theory. It sounded wonderful, but in reality it completely destroyed several countries and sacrificed the lives of several generations, when the leaders stubbornly pushed for it.

I understand your theory, now I would like to hear your practical step by step proposed solutions, if you would care to share.

Thanks and painfree wishes to you.

BB

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 9:34am

Alienspacebabe,

I don't think Vlad was saying that cluster headaches are anyone's fault. Or that you should turn into a self-centered horrible person.
When I said I felt heightened sense of responsibility, I can only speak for myself, I think I tend to overtake responsibility in that I feel TOTALLY responsible for everything and everyone around me, maybe not totally but I have had to tell myself very very directly sometimes "it's not your problem". No, no, it is just not your problem. Recently in late December when I felt another cycle coming on, combined with exercise, melatonin, I also kept saying that to myself b/c I was having a lot of family problems and when stress arises I internalize it taking all the responsibility on myself. Guess what--the cycle backed off thank God. I have to consciously say "It's not my f*cking problem" b/c I will take the "weight" of a problem on when the other person doesn't give a flying f*ck about taking any responsibility. That is something I no longer do, at least I seriously work at it. And after all the years of headaches that is exactly what I say "it is not my f*cking problem"--if somebody doesn't want to take ANY responsibility then I am absolutely not responsible--in the past I would have felt totally responsible. I mean maybe there is something to these things being called the "executive" headache--the executive is the one that stays up late worrying about everything for the other people--that was me kind of. This is someting I have noticed about ME personally, and after all of these years of the headaches, I am in
self-preservation mode, I am definitely not taking on problems for other people. Help them out, sure, take on their problems, feel responsibile for them while they take no responsibilty--no way. Well, anyway, everybody has to find out what works for them. But I think it is worth taking a look at how we handle problems and stressors--I mean it has been said on here many times before that stress is a big factor in these headaches. Isn't that all Vlad is really talking about is just reducing stress? I don't know that's what I make of it anyway. Take care, Star

Title: Re: Some ideas from CH suffer
Post by seasonalboomer on Feb 8^th, 2007, 9:57am

Looks like a timely reminder of my: "A sufferer manifesto"

- I will remember that LIFE is lived in-between the “hits”
- I will focus the anger I feel from having this condition on the headaches themselves, not on my family members, friends, or work associates.
- When I say to myself, or others, “I would do anything to not have to suffer from these things,” I will look seriously at myself to see if I have reasonably tried everything (or anything at all) to alleviate my own suffering.
- I accept responsibility for taking my own prescriptive medicine, if that is the path I have chosen. If I miss doses which result in my own suffering, I own it.
- If alcohol is my trigger, I will either a.) not drink when in cycle, or b.) accept total responsibility for the results if I CHOOSE to drink. I will also accept responsibility for a possible ruined evening if I choose to drink and my supporter and I have to leave an event early due to getting hit with a CH.
- I will not blame my parents, my family or my god for Cluster Headache. It simply “is” a part of my truth.
- I will remember that each one of us has the ability to change another Cluster sufferer’s life by being a contributing citizen to Clusterheadaches.com. (Think about what all DJ has done, or Pink and Flash with Clusterbusters, or Nani with Kudzu and seeds, or Ben with Clustermasx)
- I will reach out to others who suffer from CH either by offering to new arrivals on CH.com or through OUCH, or through random acts of empathy.
- I will remember that everyone’s pain is their own, it is not my job to define it for them. But I can reach out.
- I will remember all the things I have found (and later discarded), that I thought “worked” for me, when I read about what other sufferers have “found”.
- I will take care, when I communicate with others, not to impose my opinions on different treatments or medications, outside of my own knowledge, experiences and/or side effects.
- I will not allow my Cluster Headache condition to define me. I am not (your name here), Cluster Headache sufferer, I am instead, (your name here), someone who happens to suffer from Cluster Headaches.
- When I’m not in cycle or not getting hit, and well rested I will prepare for my next cycle by building my ammo (both physical and emotional).
- After a cycle I will take a few moments to thank those around me who have supported me. And I will do a thorough review of what worked for me, what were my triggers, what isn’t working and write down suggestions to myself on how I might handle my next cycle better.

Best regards,

Scott

Title: Re: Some ideas from CH suffer
Post by Redd715 on Feb 8^th, 2007, 10:14am

My problem with this "theory" is that it doesn't explain how children as young as 4 or 5 years old can be sufferers.

Clusterhead's lifestyles are very diverse. Age of onset, cycle frequency, cycle length, attack frequency, average attack duration, triggers too are very diverse.

People have tried meditaion, and bio-feedback, accupuncture, yoga.

Does this stop CH? No. Does it help with the coping process? I'm sure it does. Just understanding that I had CH and not some deadly brain tumor or cancer helped me cope better. I'm sure taking steps to reduse anxiety can help one cope better.

Let us think this through with logic.

We know from the study's of Dr. Goadsby, that hypothalamus of a CH is structurally different that that of a non- sufferer. If... as Vlad supposed, CH is the cause of the cellular abnormality, then it would logically follow that the longer a person has CH, there would be an ever increasing number of cells that would become effected, or the same cells would continue to see increased abnormal structural damage. This would eventially show up on everyones MRI's or CAT scans.

The hypothalamus and it's structure from birth pre-qualifies us to develope CH. When it's going to manifest is something that cannot be predicted.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 11:33am

Not complaining about this site at all, because it is awesome in many, many, many ways, but it just seems weird to me that for a condition with so many question marks, so many unknowns, a condition for all intensive purposes (other than Goadsby's remarkable theory) unexplained, certainly not understood, that there seems to be such a rigid insistence that it is fully understood. This can be seen when people with any different ideas are attacked and their ideas are called BS.
I for one am open to any theories, for the one reason that it is a condition which is not understood or explained and for the reason that I do not accept CH as a necessarily lifelong condition.
Why do people attack any theories or ideas that do not just fit the "status quo" explanation when at the same time people complain (very justifiably) how cluster headaches is a mysterious, unexplained, not understood, presently "incurable" condition? It seems very strange to me. Just my 2 cents.

Title: Re: Some ideas from CH suffer
Post by georgej on Feb 8^th, 2007, 1:43pm

on 02/08/07 at 11:33:36, starlight wrote:

I for one am open to any theories, for the one reason that it is a condition which is not understood or explained and for the reason that I do not accept CH as a necessarily lifelong condition.

Thing about CH is--it's a physical phenomenon. It's like the tide, or gravity. It doesn't care whether we accept it or not. It just is.

Altering our outlook (which I presume this murky, impenetrable thread comes down to) can certainly help us deal with the condition, but it isn't going to make it go away. That's BS. Anyone who's had CH for longer than a few days ought to know this.

Extraordinary claims (a person can make CH go away by thinking in different ways) ought to be supported by extraordinary evidence. Have you seen any in this thread? I have not.

No, I'm not open to "any theories". But I'm open to any ideas that make some sort of demonstrable sense, and for which supporting evidence can be presented. Don't see any here. No substance in this thread. It's all just fluffy like pillows.

George

Title: Re: Some ideas from CH suffer
Post by Wilbur on Feb 8^th, 2007, 2:36pm

on 02/08/07 at 11:33:36, starlight wrote:

Why do people attack any theories or ideas that do not just fit the "status quo" explanation when at the same time people complain (very justifiably) how cluster headaches is a mysterious, unexplained, not understood, presently "incurable" condition?

I think it's called "having been there, having done that, having outgrown the t-shirt." Many folks on this site know a GREAT deal more about this condition than most doctors and some neurologists, let alone newbies who come along and postulate some "new" theory.

When a "new" theory is shown to be just one of the old theories wrapped in new clothing (i.e., lipstick on a pig), it tends to be dismissed pretty quickly around here. Some are more tactful than others, but most don't like their time to be wasted.

All the more reason for newbies to read more than they write. The ones who do the opposite are usually here for more egocentric reasons.

Just my 2 cents. That makes 4 cents. Anybody care to up the ante?

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 2:42pm

George, thing is, I've had cluster headaches for 20 years and well, yeah, I know they keep on coming but I will never accept until it is proven that the malformed hypothalamus I was born with worked great for 14 years and then "broke". But for person X it works great till they are 27 or 40 or 50 and yet noone asks what broke the darn thing in the first place. Oh I forgot we were all born with it broken only it WORKED!!!!! It was a broken thing that WORKED!!!And then it craps out. Why?
George, you are obviously a bright guy. You have to at least see the point that is being made, murky or not.
If we were born with it broken, it should not work at all (for many years running smoothly).
It should not crap out on people at vastly differing ages.
It should not "fix" itself between cycles.
Otherwise it is not really broken not like any broken thing I have ever seen.

The whole picture of cluster headaches just BEGS for another explanation. In my opinion.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 2:45pm

Wilbur,

I see whatchasaying. I just believe there are so many missing pieces of the puzzle. No point in shutting the door on ideas.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 2:47pm

I understand what you two are saying though, it is an elusive condition, and it will do what it does, a force of gravity so to speak.

Title: Re: Some ideas from CH suffer
Post by thebbz on Feb 8^th, 2007, 2:54pm

One mans theory is another mans BS.
I'm with Goadsby until something more conclusive comes along. That would be proven scientific fact, and not much is proven.
I would love to be able to explain this to all ....then send the bill. ;;D
all the best
jb

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 2:56pm

But................even my neuro asks me.... before the cycle started did you notice ANYTHING strange, he will say, anything, anything physical, emotional I don't care how stupid or strange it sounds, it can sound bizarre, think, think and tell me. He's one of the best neuros in the Northeast. You know, he WANTS to figure it out. Because it is still a mystery. He tells me it is a brain disorder. But it is, as we know, not an understood brain disorder.

Title: Re: Some ideas from CH suffer
Post by Jonny on Feb 8^th, 2007, 5:19pm

on 02/08/07 at 14:36:18, Wilbur wrote:

(i.e., lipstick on a pig)

LMMFAO!!!! ;;D ;;D ;;D

Thats the best line in the whole fucking thread.....LMAO [smiley=laugh.gif]

Title: Re: Some ideas from CH suffer
Post by Kevin_M on Feb 8^th, 2007, 8:47pm

on 02/08/07 at 11:33:36, starlight wrote:

Why do people attack any theories or ideas that do not just fit the "status quo" explanation when at the same time people complain (very justifiably) how cluster headaches is a mysterious, unexplained, not understood, presently "incurable" condition? It seems very strange to me. Just my 2 cents.

Perhaps Star, I am just confused as to which of the ideas proposed should have been embraced. On this one thread alone, within minutes, two more differing views.

on 02/07/07 at 13:01:46, starlight wrote:

It is most certainly a sleep disorder, and anything which can deepen sleep is extremely helpful.

on 02/07/07 at 13:07:06, starlight wrote:

I think yes I agree stress is definitely a factor. The key is to calm the mind, don't fear relaxing but do it through exercise, meditation, massage (foot massage--sometimes this works).

Other past ideas also proposed but seemed to have slipped by are the connection with having mononucleosis and CH and with chicken pox and CH.
Then birthdays born near the solstices, eating beets, eating salmon, an interest in blood types having a relation. Also your agreement with energy flows:

on 01/12/07 at 09:11:45, starlight wrote:

I just found that to be a very interesting statement by the cranio-sacral practitioner--something about it seems very true to me (intuitively) I guess.

Which of these should have been embraced, or should all of them have been?

With the uncountable number of stars in the sky, why isn't our night lit up like day, asks Olbers paradox. The more farther out or distant they are, the more their light is diluted and the weaker they shine, not providing much light.
To be sceptical of what seems to be known is fine, but unscientific scepticism is rarely concerned with evidence.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 10:43pm

Kevin,

Some of that isn't totally fair.
Yes, I asked questions, probing to see if maybe there were any connections out of genuine curiosity. Wondering if salmon and beets may help--OK a little flaky but not a crime. Thinking the cranio-sacral person might have an interesting theory--no harm there. Thinking CH is a sleep disorder, I'm not the only person who thinks that--research my friend. Thinking it is stress related (related, not entirely explained by but related to stress)--that's from personal experience--and it's been said on here a hundred times before people saying that stress has brought on cycles, headaches, etc. Also there is nothing contradictory in thinking that stress could contribute to a sleep disorder. Think of your most basic sleep disorder--insomnia--stress related most definitely. Stress is also a contributing factor to more serious sleep disorders.
I'm only trying to ask questions in an attempt to fill in some of the missing pieces.
I'm sure I will not succeed as most of these ideas I've had I'm sure sucked.
There are just so many unknowns, the questions have to be asked.
Vlad made a good analogy about the car which runs well for 20 years and then suddenly breaks, was it broken at the start or did it break somewhere along the way? People are just dismissing it, making sarcastic remarks, insulting his English, and I guess I just don't get it. Is it just because he's not coughing up the same old stuff?
I think I understand it though that most of us have gotten so much grief from doctors along the way that we want something concrete to hold onto and we do not want any more misunderstanding of the disorder. But unfortunately that gets carried to an extreme and closes the doors to trying to get rid of the lingering lack of understanding and unknowns that remain.

Title: Re: Some ideas from CH suffer
Post by alienspacebabe on Feb 8^th, 2007, 10:49pm

star, this is my problem with this thread:

on 02/07/07 at 18:18:23, Vlad wrote:

The implication that changing our state of mind will cure our CH - that, therefore, it is our fault we're getting hit. It is a huge insult to everyone here.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 10:59pm

Alienspacebabe,

I just don't think Vlad meant to insult anyone. I think he was just talking about stress reduction. It has been said on these boards hundreds of times people saying that stress contributes to their headaches/cycles. I think Vlad was just trying to ask questions trying to explore what is causing these headches, what causes them to flare up??? Maybe for some stress contributes. Please don't feel insulted. Couldn't the headaches be caused by a screwed up hypothalamus and still be exacerbated by stress? Or even by a certain mindset--by mindset meaning like something as simple as feeling too responsible for things you are not responsible for (that is only one random example)? Where I am coming from, I do not think I have the perfect mindset--if someone, anyone says, listen you have cluster headache it is a brain disorder but by changing your mindset or easing stress you can maybe fend off a cycle, I am game. I am game. I am not insulted. But I respect that you do feel insulted, and I am very sorry for that. I have felt insulted many times before by doctors in regards to CH and so I can understand there are wrong buttons that people push.

Title: Re: Some ideas from CH suffer
Post by thebbz on Feb 8^th, 2007, 11:03pm

starlight, you and vlad need to do some simple research.
CH is much more complex than a simple sleep disorder.
Please do some study on neurology,vascular system,psychology,hormones and endocrine system.
Let Vlad back up the statements with some real fact or study. Otherwise it will be only uneducated speculation.
This helps no one.
We do love to joke however.
all the best

Title: Re: Some ideas from CH suffer
Post by Shari on Feb 8^th, 2007, 11:07pm

"A sufferer manifesto"
posted by: seasonalboomer
This is one of the most meaningful messages I've seen posted on this board. We are just starting the 4th bout of CH. My husband is 72 years old and was retired when he had his first CH. His cycles are approx. 2 years apart. This web site is like a port in the storm.

Shari (supporter)

Title: Re: Some ideas from CH suffer
Post by alienspacebabe on Feb 8^th, 2007, 11:25pm

on 02/08/07 at 23:07:54, Shari wrote:

Welcome home, Shari and husband!

Lizzie

Title: Re: Some ideas from CH suffer
Post by Kevin_M on Feb 8^th, 2007, 11:25pm

on 02/08/07 at 22:43:05, starlight wrote:

Some of that isn't totally fair.

I'm not sure what is unfair about recapping your ideas or one's you've been in agreement with, unless I neglected to mention others you've had.

I only asked which of these should be the idea to run with or should all of them be embraced, I hadn't mentioned them being a harm yet, or crime.

Quote:

Thinking it is stress related (related, not entirely explained by but related to stress)--that's from personal experience--and it's been said on here a hundred times before people saying that stress has brought on cycles, headaches, etc.

Stress can be implicated as a fuel in many diverse afflictions.

I notice you seem to avoid doctors, but pinning grief on doctors doesn't differentiate yourself from ideas or treatments that might not help either.

Quote:

I think I understand it though that most of us have gotten so much grief from doctors...

Quote:

I have felt insulted many times before by doctors in regards to CH and so I can understand there are wrong buttons that people push.

Title: Re: Some ideas from CH suffer
Post by Wilbur on Feb 8^th, 2007, 11:26pm

on 02/08/07 at 22:59:23, starlight wrote:

I think he was just talking about stress reduction. It has been said on these boards hundreds of times people saying that stress contributes to their headaches/cycles.

And it's been said even more often that being and staying stressed keeps them at bay. Just ask around here a little - you'll see.

Title: Re: Some ideas from CH suffer
Post by Jimi on Feb 8^th, 2007, 11:35pm

and why are you calling alienspacebabe....alienspacebabble? Seems kinda smartass to me. You and Vlad need to call each other on the phone. It sounds like you two have a lot in common. Maybe you two can put your heads together and find a cure.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 11:37pm

Kevin,

I have seen many doctors in the past, and grew to dislike visiting doctors, and now mainly avoid them (other than my neuro).
I am not advocating any theory be embraced, just want answers.
With the stress thing, yes it exacerbates many conditions, but if someone says it exacerbates CH and then goes into detail about it in some way like Vlad and I say yes I kinda get what you're saying and I also like some of the questions you're asking, what is wrong with that?
I shouldn't have said "cluster headache is a sleep disorder"--it is just that recently I have wondered if it was, that did not give me the right to say that it was. And I apologize I guess I just assume that it IS when my sleep has been so disturbed by cluster headche, but awake I am mainly fine. Couldn't that be called a sleep disorder of sorts? I wish they would call it a sleep disorder. Cause it sure feels like one. Ya know what I mean?

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 11:40pm

Jimi and Alienspacebabe....I am totally sorry, I totally misread the name. Jimi, when I read your post, I was like what what is he talking about? I totally misread the name. SWEAR to God. Very sorry.

Title: Re: Some ideas from CH suffer
Post by Jimi on Feb 8^th, 2007, 11:44pm

ok, I believe you. Your forgiven.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 11:47pm

I don't know how I did that? I think because the name is in the corner--if you're reading REALLY fast and and you look at it out of the corner of your eye, it looks like that is what it is says. Alienspacebabe is a very cool name--I think I my eyes get whacked out reading on the computer. Sorry.

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 8^th, 2007, 11:53pm

I went back and fixed the names. Sorry--my bad.

Title: Re: Some ideas from CH suffer
Post by georgej on Feb 8^th, 2007, 11:57pm

So....what happened to Vlad the E-mailer? [smiley=huh.gif]

Must be daytime there.

George

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 9^th, 2007, 12:09am

Here's an interesting article

http://www.neurologyreviews.com/jun06/headache.html

Title: Re: Some ideas from CH suffer
Post by thebbz on Feb 9^th, 2007, 2:49pm

:D Thanks for the link starlight. This is a good example of relevant information submitted for due consideration and education.
all the best
jb

Title: Re: Some ideas from CH suffer
Post by georgej on Feb 9^th, 2007, 7:05pm

on 02/09/07 at 14:49:09, thebbz wrote:

:D Thanks for the link starlight. This is a good example of relevant information submitted for due consideration and education.
all the best
jb

Yes, thank you.

Best,

George

Title: Re: Some ideas from CH suffer
Post by starlight on Feb 9^th, 2007, 9:31pm

Glad you guys liked the article. I thought it was interesting--put CH into kind of a new perspective for me. Take care, Star

Title: Re: Some ideas from CH suffer
Post by ClusterChuck on Mar 13^th, 2007, 12:28pm

Maybe I should not revitalize this collection of crap, but I can't resist. It just infuriated me the more and more I read.

These two VERY delusional individuals are comfortable with their hypothesis, fine. But don't get upset when it is pointed out how full of bullshit it is.

And a basis for your whole argument is how can something work for 5, 10, 20 (or whatever number) years and then fail? It appears that neither one of you have any mechanical aptitude or understanding.

To use your favorite example, a mechanical devise: a part, that is defective from the factory, can work amazingly well, until the stress on that part finally causes it to break or fail. Why does one last for 5 minutes, another 5 years, and still another 30 years? Because of the severity of the defect. You see it all the time in recall notices. Some of the defects show up, and in other units, it never shows up. But the potential is there.

Using the same theory on the human body, in a family with extensive heart failures, why does one have a heart attack and die at the age of 30, when that person's brother lasts until he is 75 before his fatal heart attack? They both had defective hearts.

What a load of crap this thread's theory is.

File it under "Another crackpot cure"

Chuck

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 21^st, 2007, 8:14pm

Clusterchuck,

I do agree with your explanation of how "faulty parts" will work for a period of time (sometimes).
But I think there is a lingering enigma with cluster headache--why the "faulty part" breaks down, say, in episodics, for 3 months and then rights itself for a period of time--sometimes years. There is so much unknown about this headache type. I think that the mystery of when cluster headaches first set in is a valid question--I don't think anyone fully understands why some get them at age 11, some at age 50, some at age 70--and, if you will pardon me, I don't think that heart disease is really an accurate analogy. Heart disease is progressive and normally sets in over the course of a person's life for various reasons (unless the person is born with a serious heart defect, in which case, usually they will not live into their 70's as you had said).
The real question to me is why, at least is episodics, but sometimes in chronics also, the HA's will go away--sure the hypothalamus is probably busted from the start--but would you not agree it is busted in a very odd way? I have never read any article on CH where the writer said ah, yes, this is the explanation for the rhyme and reason of cluster headache. So far, there is no rhyme or reason, and for that reason sure we can all disagree but I don't think anyone is delusional here only searching for answers, and I think that is OK.
Cluster headache is still poorly understood, and I am not sure that I understand why the tone of this board is so antagonistic towards questioning cluster headache, how it works, etc.
I posted an article on this thread in which a neurologist says he "proposes that cluster headache and narcolepsy are reciprocal disorders", I think that that is interesting and informative to those suffering and I would not have found the article if all of us here had not been having this disagreement.
No one needs to jump down anyone's throat just because their ideas meander from the norm.

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 21^st, 2007, 8:22pm

One more additional thought, I notice a lot of antagonism in general towards people with their "crackpot cures". If someone is going to cure this, they are going to need to look at why the hypothalamus worked just fine for a period of time, and why and how, at least in episodics, it rights itself again and certainly functions in a far more normal way than during episodes of cluster headache.
If I have an illness, say a bacterial infection, and my body fights it off and I get well, what is my body doing to fight it off? Anyone trying to assist me in fighting off a future bacterial infection will need to ask this question, not merely say, you have a bacterial infection...you have a bacterial infection...you have a bacterial infection.
Once and for all...yes, we are probably all born with a bum hypothalamus. But lets start asking the other questions, questions that might reveal something about how to better treat this condition, or dare I say, cure it. Because if the body knows how to right the hypothalamus for sometimes long periods of time, then let's look at that. Can we agree that that is not a delusional premise?

Title: Re: Some ideas from CH suffer
Post by georgej on Mar 21^st, 2007, 8:48pm

http://usera.imagecave.com/georgboise/mouthtomouth.jpg

Guess this thread wasn't quite dead yet.

;)

Best,

George

Title: Re: Some ideas from CH suffer
Post by ClusterChuck on Mar 21^st, 2007, 9:47pm

ROFLMFAO, George!!!

[smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

Chuck

Title: Re: Some ideas from CH suffer
Post by BB on Mar 21^st, 2007, 9:58pm

Looks like the monkey is performing resuscitation? .. 8)

Annette

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 22^nd, 2007, 1:47pm

Alright, I get it. I'll be sure not to share any give opinions/agree with opinions or share medical articles expressing ideas that haven't already been puked up on these threads.
Honestly, does anyone have anything new to say?
I posted an article that had new information that hadn't been on the boards before--little did I know how "offensive" that would be to those who have CH who might want to read what a NEUROLOGIST is saying in the article.
Take it or leave it--I really could care less, I'll be sure if I comment again it's the same old regurgitation.

Title: Re: Some ideas from CH suffer
Post by seasonalboomer on Mar 22^nd, 2007, 1:59pm

starry,

At one time or another any of us can read one of these threads and say, "what a crock!". Sometimes we ignore it and move on and maybe take the garbage out, other times we respond and say, "look, if it was as simple as that you think we wouldn't have thought of that", or, "do you know how many times someone has meandered down that lane to arrive at the same point of 'fuk, i dunno"."

I've read many of your posts and you go all kinds of directions with CH. It's your right. It's also someone else's right to say, "starry, you're a freak!". Some folks are in the middle of a cycle and they read something that would be an affront, maybe someone's oversimplistic view of CH, or claims that some old, and long ago defamed cure is the new cluster-messiah, sometimes you go off.

I read your posts, at this point, to see what crazy shit you're going to say next.
That isn't nice to say but that's what you're putting out there.

Scott

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 22^nd, 2007, 2:38pm

Scott,

You're entitled to your opinion. I'm not offended--I'm sure I have said some "crazy shit" before. I have never hawked or peddled cures though I must say.
I posted an article here that had some interesting stuff in it--I think that is worth something. Basically, the only bone I have to pick is that in general, I've seen it done over and over, there is a "mob mentality" of antagonism towards anyone straying from the "status quo" understanding of cluster headache. I could write a quick outline of this "understanding"--it would be a brief outline starting with

Cluster Headache
I. Whacked out hypothalamus you were born with (warning: do not question this for any reason even though it has not been proven)
A. Starts whacking out at whatever age it starts because of hormones (do not question why it hits different people at different ages or whether hormones are really what sets it off at a particular age--if it sets in at age 7 or age 70--it's cause of your damn hormones!!!!!!)

II. CH are from your whacky hypothalmus
A. Don't question what caused them to set in in the first place.
B. Don't question why they go away for a time (in some folk)
C. Don't anyone suggest they themselves have gone into remission.

This is a poorly understood condition. If I am to believe what I read on these boards by the "thought police" I would think it is a well-understood condition.
Maybe I shouldn't come up with crazy ideas, but I think it is just as questionable
why others get to dominate with their ideas (refer to my outline). If it were a well-understood condition, that would be fine, but it is not, it is very poorly understood.
As far as people reading who are in cycle and being affronted that a person is oversimplifying or offering an outdated cure--I understand why they would at times or in certain scenarios be affronted. I have had people say to me
mid-cycle--oh you just got these because you had to go back to school---grrrrr--
that made me mad. I have had doctors tell me duh I don't know what you have, maybe you are just crazy, sorry I have no medicine. BUT this board gets the info out--anyone reading knows that they have a hypothalamus problem and that they are not crazy. Ideas about mind/body, etc. I don't think they are harmful. Exercise has helped me--no it did not cure anything but it has helped me.
Vlad posted that in his opinion, "actual problem lies in sleep disorder". OK--I found an article and posted it in which a neurologist says that he proposes that "narcolepsy and cluster headache are reciprocal disorders". OK--there is no harm here--this is information--no one mid-cycle needs to be treated with such kid-gloves that they cannot hear that idea that cluster headche may bear some "similarities" with "narcolepsy".
Anyway, this is my two cents.

Title: Re: Some ideas from CH suffer
Post by seasonalboomer on Mar 22^nd, 2007, 2:54pm

Starry,

you may be right. it happens sometimes. but then sometimes a great discussion occurs and it makes it all worthwhile.........

Scott

Title: Re: Some ideas from CH suffer
Post by BB on Mar 22^nd, 2007, 6:19pm

Starlight , relax ! No one is making fun of you, we are laughing at the thread itself.

When we see someone trip and fall over, we laugh. Thats not because we want to be mean to the person, its just the act of tripping and falling is funny. Quite often the person who trips can see the funny side and laugh as well. No harm in that!

We are all entitled to our opinions here and we are also entitled to laugh at anything we may find amusing. Our sense of humour maybe very different and we may find different thing funny but I assure you no one here is picking on you. Relax and laugh along with us. Its fun to say silly things then to be able to laugh at oneself.

Life is too short to be grumpy and laughter is still the best medicine. :)

Hugs

Annette

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 22^nd, 2007, 7:57pm

Annette,

It's all good. I understand the jist of the laughter was at the thread itself. There were several people directly "picking" on what I had said though--"delusional" and "crazy shit" were 2 examples. I'm not offended or angry at anyone. There are some hard critics here at the cluster headache hangout--I am sure you have seen that at times--sometimes I am just not up for it.
I'll go sit in my grump corner till I snap out of it...Star

Title: Re: Some ideas from CH suffer
Post by thebbz on Mar 22^nd, 2007, 8:13pm

8)
Vlad is the one missing here. You did well.
jb
Having alligator skin around here helps. They are harmless really. Internet tough guys. [smiley=laugh.gif]

Title: Re: Some ideas from CH suffer
Post by Kevin_M on Mar 22^nd, 2007, 9:00pm

on 03/22/07 at 14:38:04, starlight wrote:

cluster headche may bear some "similarities" with "narcolepsy".

Star, I notice you took the liberty of saying there are similarities, because I didn't read that in the article.

Quote:

a neurologist says that he proposes that "narcolepsy and cluster headache are reciprocal disorders".

It is a proposal and the article said he listed several parallels (which confuses me when speaking of reciprocals ;) ), but before it can be said to be "reciprocal", the only mentioned basis in the article is this:

Quote:

orexinergic neurons and CSF orexin A are diminished in human narcolepsy while orexinergic neurons are located in brain regions of increased metabolic activity and tissue density in cluster headache patients.

It seems loose yet, I might think their is some way to go before a reciprocal relationship might be found, and, I'd wait before saying there are similarities.

This seems to be his suggestion through it all.

Quote:

there may be a potential for the therapeutic use of selective orexin-2 receptor antagonists in cluster headache, an approach that requires testing.

yet.

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 22^nd, 2007, 9:27pm

Kevin,

I am impressed with your thorough perusal of the article.
Actually if you look up the word "reciprocal" you will find the definition "corresponding, matching" which is the way I believe the word was meant in the article--I would assume that saying there are "similarities" IS in fact correct--if you would rather I say "corresponding, matching" then by all means, I guess there may be a subtle difference there and it was not intentional on my part....

But, In fact, I don't think that by breaking the article down the way you did that that minimizes the statement made by the neurologist--he said he "proposes they are reciprocal disorders"--I don't think he just pulled that statement out of the air--he is a neurologist and is researching this and knows about both of the disorders.

As I said, take it or leave it...for me it gives me another way to understand and conceptualize cluster headache rather than just the same old "you have cluster headache, your hypothalamus sucks". For me, that is not enough--I'd like to have more answers than that. Certainly I have always wanted to know why these things strike at night...yeah yeah I know oxgen gets lowered during REM...yeah, yeah, the same old stuff that tells me nothing. I think that CH could very possibly be a type of sleep disorder even for those who get hit during the day--if you do some research about narcolepsy, you will find that many of the symptoms of the disorder take place during waking hours. But as I said, people can take it or leave it, whatever works for them, I'm really not on a quest to convince anyone of anything...only looking for more detailed
answers/information than hypothalamus sucks. If it's useful to someone great, if not they can chuck it.

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 22^nd, 2007, 9:33pm

Kevin,

One more thought, as far as them being "reciprocal disorders"--this is only my interpretation--I really thought he was talking more about the two different phenomena--narcolepsy and cluster headache, not that he was saying according to chemical analysis, etc. I understand the article did not give much detail. I thought he was comparing the two phenomena as far as what is occurring within the sleep cycle? Anyway, I hope it was in some way useful to read.

Title: Re: Some ideas from CH suffer
Post by Kevin_M on Mar 22^nd, 2007, 9:56pm

on 03/22/07 at 21:27:43, starlight wrote:

Actually if you look up the word "reciprocal" you will find the definition "corresponding, matching" which is the way I believe the word was meant in the article--I would assume that saying there are "similarities" IS in fact correct--

Disagree.

He seems to be proposing a relationship to inverse observations with the words diminished and increased. You will have to point out to me the similarities stated.

reciprocal = inverse

inverse = containing terms of which an increase in one results in a decrease in another.

Quote:

Title: Re: Some ideas from CH suffer
Post by pieface_49 on Mar 25^th, 2007, 5:38pm

Thank you for the post Vlad,
As a newcomer, I am attempting to remain open minded. Like Klink on Hogan's Heroes, "I know nothing, absolutely nothing". I can see some terms being misunderstood and some language barriers. Since there is no known cure and the root cause is not known, every idea to me is a good idea until proven otherwise. There seems to be a common thread between all of us. We are above average intelligence and we are determined to find out what helps us. I hope I never become so intelligent I will lash out at someones thought no matter how outlandish their thought may seem. Hopefully if I do have something to refute what they say, I will have some facts to back it up and will come across in a kind manor.

I just so happen to have one of those unusual continually thinking minds. There is no doubt to me that I am not normal in that aspect and to others. Is this a common thread amongst us? I have a sleeping disorder when I am not in the midst of an episode. It is just the opposite of when I am in an episode. Alarm clocks do not wake me up and a tornado could come through in the midst of a deep sleep and I would never know. On the other hand, when I am in the midst of an episode, my sleep is all messed up. Fear and the reality of another bout with the "beast" is enough to keep me awake. I usually pass out after the "beast" has left due to exhaustion. During an episode, I do not need as much as sleep as without the episode. My body adjusts.

There appears to be something else that is self evident. All of our symptoms though close to being identical, could be the result of another underlying root cause. This is self evident due to the fact that what works for one may not work for another. It is also self evident because surgeries do work for some and not for others.

Some folks are cautious concerning treatments, others are gunho and willing to try anything. I for one have an addictive personality. I can see myself trying shroom's and really enjoying them. Then, I may very well find myself in another prediction. That being addiction, whether it be psychological or physical. Something self evident from the above is we all have different psychological makeups.

Go ahead, lash out at me. Nothing is worse than a bout with the "beast". Sticks and stones may break my bones, but names will never hurt me. Perhaps someone can beat me with facts, I welcome it. Life is too short to suffer from "terminal seriousness". I am PF at the moment and any moment in time being PF, I am grateful for.

Title: Re: Some ideas from CH suffer
Post by BB on Mar 25^th, 2007, 5:47pm

on 03/25/07 at 17:38:49, pieface_49 wrote:

Thank you for the post Vlad,

Go ahead, lash out at me. Nothing is worse than a bout with the "beast". Sticks and stones may break my bones, but names will never hurt me. Perhaps someone can beat me with facts, I welcome it. Life is too short to suffer from "terminal seriousness". I am PF at the moment and any moment in time being PF, I am grateful for.

Hi Pieface,

Just 2 things

1- Vlad's thought would be welcomed if he could come back and clarify things. I invited him to come back to discuss how he would practically put his recommendation/suggestion to work and he had not come back. Its hard to respect those who randomly drop their ill thought out speculation and fail to follow it up without at least some intelligent debate.

2- Why would we bash you now that you are painfree? Here we celebrate any painfree time for anyone. Its such precious time, why waste it.

So, shall we dance the happy dance for you ? Hip hip hooray .... Hey folks, Pieface is painfree ... YAY !

:)

Annette

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 25^th, 2007, 9:16pm

Kevin,

That one example you are giving does imply an inverse--agreed. About that one chemical.
But he does give a "similarity" in saying that "both (disorders) are mediated by hypocretin". And he mentions "parallels"--that's his word not mine--the word "parallels" inspired me to "interpret" the usage of the word "reciprocal" to mean "corresponding".
Come on--if a person talks about "parallel situations" aren't they talking about
"corresponding" situations--situations with some similarities.
Overall, I think the use of the word "reciprocal" was confusing in the article especially when as you have brought up, he does speak of one "inverse" relationship.
If you want google, Cluster headache and sleep disorders--talks about how narcolepsy can influence cluster headache--a little bit of a separate issue there but interesting.
Also, what I find interesting and I can't find the damn article now is that I had read somewhere how they think that both disorders have to do with the body giving the wake signal at the wrong time of sleep or something like that damn I looked and I can't find that article.

Title: Re: Some ideas from CH suffer
Post by Kevin_M on Mar 25^th, 2007, 9:59pm

on 03/25/07 at 21:16:25, starlight wrote:

But he does give a "similarity" in saying that "both (disorders) are mediated by hypocretin".

He only mentions it is an orexin "precursor", not a "similarity" for narcolepsy and CH, a "potential" link, built on "speculation", untested.

Quote:

hypocretin, an orexin precursor, provides an important potential link

Quote:

...orexin A are diminished in human narcolepsy...

Dr. Shapiro speculates that orexin B may be increased in the brain during cluster headache attacks

Quote:

If this is the case, he suggests that this disorder may be a result of hyperactivity of orexinergic systems and that there may be a potential for the therapeutic use of selective orexin-2 receptor antagonists in cluster headache, an approach that requires testing.

It could be interesting.

Quote:

And he mentions "parallels"

They don't seem to be particularly mentioned though.

Quote:

Come on--if a person talks about "parallel situations" aren't they talking about
"corresponding" situations--situations with some similarities.

You will have to show me the similarities mentioned before interpreting "parallels" and taking the liberty of saying narcolepsy and CH are "similar" conditions.

Quote:

Overall, I think the use of the word "reciprocal" was confusing in the article

Yes, it could be.

:)

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 25^th, 2007, 10:01pm

And the thing is for me, personally, cause I get these HAs at night, is that I have totally noticed that I can oftentimes feel myself starting to wake up right before the onset of the headache, so why am I starting to wake up right before the headache strikes? Sleep disorder? Maybe. Maybe the whole thing is some kind of sleep disorder itself. Dunno. I kinda think it is. But maybe not.

Title: Re: Some ideas from CH suffer
Post by Kevin_M on Mar 25^th, 2007, 10:06pm

How about the 3 or 4 hits I can get during the day, untreated?

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 25^th, 2007, 10:09pm

Keivn,

Yes I understand what you are saying, and I think we could agree 100% that the word "reciprocal" and "parallel" were quite confusingly used in the article. People could just come out and say what they mean you know? Geez, are they similar or not--if they would just drop the million dollar words--well you know it might actually make sense--but that's the beauty of "scholarly" articles--you're really not sure what the hell they're talking about--What's that AA phrase--keep it simple stupid :)

Title: Re: Some ideas from CH suffer
Post by starlight on Mar 25^th, 2007, 10:14pm

Kevin, I get hit during the day too--but as far as what you're asking I really believe that the root of the disorder could be disordered sleep. I did some reading about narcolepsy (out of curiosity) and the disordered sleep extends throughout the daytime where the person is still confusing sleep stages during waking daytime hours. It's just another way to look at the whole thing. Hope you are painfree.

Title: Re: Some ideas from CH suffer
Post by Kevin_M on Mar 25^th, 2007, 10:18pm

It is good this board is Organized to help in Understanding Cluster Headaches. ;)

I don't have narcolepsy, just CH, my nephew does and my grandfather did but not CH. :)

Quote:

from article: Also, some mutations in the gene for the orexin-2 receptor increase the susceptibility to cluster headache

Who knows, maybe??? :)

Title: Re: Some ideas from CH suffer
Post by JeffB on Mar 27^th, 2007, 1:29pm

on 03/25/07 at 17:38:49, pieface_49 wrote:

Shulttz was the one who knew nothing. ;;D

Title: Re: Some ideas from CH suffer
Post by bejeeber on Apr 2^nd, 2007, 8:58pm

on 02/07/07 at 22:14:55, Vlad wrote:

if you are native speaker nothing to be proud of if you speak that only language well. There is no hard work involved in that case and it is not a personal achievement. It is just shows ignorance

In complete agreement on that one Vlad. I'm one of those ignorant sloths who only speaks one language, and not all that well! :P

Speaking of laziness (and in this case I'm actually also very pressed for time), I've only read the 1st and 4th pages of this thread, but I'd like to comment about meditation as cluster headache therapy, as was mentioned on the first page.

I've been meditating twice daily for about 25 years and have had episodic CH for about 26 I think.

If I'm in cycle I find that I have to STOP meditating because it's a surefire trigger! Like so many others, I find that the most relaxed times are the most fraught with CH peril.