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Vlad
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Some ideas from CH suffer
« on: Feb 6th, 2007, 6:28pm » |
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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???
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Guiseppi
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Re: Some ideas from CH suffer
« Reply #1 on: Feb 6th, 2007, 6:55pm » |
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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
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Vlad
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Re: Some ideas from CH suffer
« Reply #2 on: Feb 6th, 2007, 7:57pm » |
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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…
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Redd
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Re: Some ideas from CH suffer
« Reply #3 on: Feb 6th, 2007, 8:22pm » |
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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.
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Vlad
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Re: Some ideas from CH suffer
« Reply #4 on: Feb 6th, 2007, 8:41pm » |
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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...  but lets be open to anything new!!
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BB
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Re: Some ideas from CH suffer
« Reply #5 on: Feb 6th, 2007, 8:47pm » |
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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
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BB
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Re: Some ideas from CH suffer
« Reply #6 on: Feb 6th, 2007, 8:54pm » |
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on Feb 6th, 2007, 8:41pm, Vlad wrote:| 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.!! |
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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
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Vlad
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Re: Some ideas from CH suffer
« Reply #7 on: Feb 6th, 2007, 10:17pm » |
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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.
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Vlad
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Re: Some ideas from CH suffer
« Reply #8 on: Feb 6th, 2007, 10:32pm » |
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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.
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starlight
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Re: Some ideas from CH suffer
« Reply #9 on: Feb 7th, 2007, 1:01pm » |
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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
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starlight
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Re: Some ideas from CH suffer
« Reply #10 on: Feb 7th, 2007, 1:07pm » |
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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).
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starlight
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Re: Some ideas from CH suffer
« Reply #11 on: Feb 7th, 2007, 1:15pm » |
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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.
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LeeS
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Re: Some ideas from CH suffer
« Reply #12 on: Feb 7th, 2007, 1:22pm » |
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Have you been on those entheogens star?
(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? 
-Lee
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George_J
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Re: Some ideas from CH suffer
« Reply #13 on: Feb 7th, 2007, 1:38pm » |
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on Feb 7th, 2007, 1:22pm, LeeS wrote:
Are you any good at foot massage?
-Lee |
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Star, you truly don't want to answer that question.
George
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starlight
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Re: Some ideas from CH suffer
« Reply #14 on: Feb 7th, 2007, 3:07pm » |
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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
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starlight
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Re: Some ideas from CH suffer
« Reply #15 on: Feb 7th, 2007, 3:13pm » |
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All foot humor aside, massage is very good for CH people. So Lee I hope you can get a foot massage very soon. Star
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JeffB
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Re: Some ideas from CH suffer
« Reply #16 on: Feb 7th, 2007, 4:07pm » |
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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.
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Vlad
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Re: Some ideas from CH suffer
« Reply #17 on: Feb 7th, 2007, 6:18pm » |
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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.
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kcopelin
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Re: Some ideas from CH suffer
« Reply #18 on: Feb 7th, 2007, 6:28pm » |
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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
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JeffB
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Re: Some ideas from CH suffer
« Reply #19 on: Feb 7th, 2007, 7:15pm » |
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on Feb 7th, 2007, 6:18pm, Vlad wrote: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. |
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I wish I had my bullshit meter working.
Sorry friend, I think your theory sucks.
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Vlad
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Re: Some ideas from CH suffer
« Reply #20 on: Feb 7th, 2007, 7:28pm » |
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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.
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JeffB
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Re: Some ideas from CH suffer
« Reply #21 on: Feb 7th, 2007, 7:35pm » |
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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.
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starlight
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Re: Some ideas from CH suffer
« Reply #22 on: Feb 7th, 2007, 10:02pm » |
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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.
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Vlad
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Re: Some ideas from CH suffer
« Reply #23 on: Feb 7th, 2007, 10:14pm » |
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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!
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starlight
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Re: Some ideas from CH suffer
« Reply #24 on: Feb 7th, 2007, 10:17pm » |
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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
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