Clusterheadaches.com Message Board


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

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Sunlight seems to have helped (title edited)
        
(Message started by: thislemis on May 17^th, 2008, 3:25pm)

Title: Sunlight seems to have helped (title edited)
Post by thislemis on May 17^th, 2008, 3:25pm

After reading about the hypothalamus, mostly likely due to it's regulation of circadian rhythms, may be the root cause of cluster headaches, I made a breakthrough that seems to have solved my problems.

I've always been a night owl. Left to my own devices, I'll sleep from 6am to 1pm every day. After many years of sleeping during the day, I developed the habit of sleeping with my eyes covered. My usual eye cover was a blanket, which takes some practice to get used to and keep in place. The point is that my adoption of sleeping with my eyes covered was a gradual process that I hardly even noticed happen.

About the same time as I became a master of keeping my eyes covered while sleeping, I experienced my first cycle. This was about 16 years ago. I never connected the two until I stumbled across the connections between CHs and the hypothalamus.

Once it occurred to me that blocking sunlight while I sleep might be impairing my brain's ability to regulate my circadian rhythms, I immediately stopped sleeping with my eyes covered. In fact, I opened up the blinds in my bedroom to let in as much light as possible. I haven't had a CH since. It's been about a year since my last, which I know isn't conclusive proof, but I have been able to abuse my sleep schedule without so much as a shadow.

Before you ask, I was always careful to only cover my eyes without interfering with my breathing. I would always have my nose and mouth uncovered.

While this story may not apply to your sleep habits, it may still apply if you rarely are aware of dawn and dusk. Perhaps you sleep with a mask on, perhaps you are at work in a place where there are no windows in sight, I don't know. If there is any way to increase your body's awareness of sunrise and sunset, this may help you.

I'd love to hear some feedback! Good luck to you all and hang in there.

Title: Re: Sunlight seems to have cured me
Post by Brew on May 17^th, 2008, 3:31pm

Welcome.

But be awfully damned careful when you throw around the "C" word (cure).

Title: Re: Sunlight seems to have helped
Post by thislemis on May 17^th, 2008, 4:09pm

Well, it's been working for me is all that I can say. Also, please note the "seems to have" qualifier in front of the word "cured." I have edited the title of my post. I am sorry if it offended anyone.

I wanted to share my experience. I'm sure there's someone out there that could benefit. If it doesn't help you, I am truly sorry.

Since I've made this simple change, I have been completely symptom free. If you can think of any way that this might be applied to your situation, then it's so easy that it has to be worth a try. I'm not suggesting sitting in the sun, just making sure your brain is always aware of the day/night cycle so that it has what it needs to properly regulate its circadian rhythms I don't understand why you think that is a stupid idea? From what I've read, there seem to be many things that could cause CHs. Clearly there are others out there that are going to have the same triggers as I do. I felt I had a responsibility to report my experience to this community. If even one other person is helped by this, then it's worth posting here every day.

Title: Re: Sunlight seems to have helped
Post by tonyonly on May 17^th, 2008, 4:24pm

on 05/17/08 at 16:09:16, thislemis wrote:

I'm not suggesting sitting in the sun, just making sure your brain is always aware of the day/night cycle so that it has what it needs to properly regulate its circadian rhythms I don't understand why you think that is a stupid idea? From what I've read, there seem to be many things that could cause CHs.

I have understood something similar from what I've read about CH and hypothalamus. But then again, for modern people it is very, very little that seems to be enough to make hypothalamus act "unnaturally". Count in ALL artificial lighting, plus smaller light sources, tvs, monitors etc etc. I think you have found something that works just for you - but for others to benefit for the same source would mean living like cave men or something...this also has something to do with melatonin and why people with CH produce less of it.

Anyway, I hope there's a cure for you - a year for CH is nothing if it's just remission that suits luckily with this.

Title: Re: Sunlight seems to have helped (title edited)
Post by sandie99 on May 17^th, 2008, 4:28pm

Well, I'm glad that you've found something which helped you. :)

But, I know that the same doesn't help me. I know that because I´ve had enough of time sitting in the sun and sleeping at rooms with bright curtains. But the beast is still here...

Sanna

Title: Re: Sunlight seems to have helped (title edited)
Post by mattscott on May 17^th, 2008, 4:36pm

[quote author=brewcrew
I value this place a great deal, and all of the souls that search for answers here. Nobody here should be discouraged when they find something that works - that's unforgiveable in my book. Those of you who are guilty of this know who you are and you ought to knock it off.

Title: Re: Sunlight seems to have helped (title edited)
Post by Brew on May 17^th, 2008, 5:00pm

on 05/17/08 at 16:36:29, mattscott wrote:

What's your point? Did I ever use the word "cure?"

I'm not discouraging anybody from laying in the sun, eating live lizards, or jumping up and down whilst barking like chicken. But you cannot and will not accuse me of using the word "cure," nor will you be successful in accusing me of being a hypocrite.

Now I ask again - what's your point?

Title: Re: Sunlight seems to have helped (title edited)
Post by mattscott on May 17^th, 2008, 5:36pm

Brew-I was not accusing you,it had nothing to do with what you said.
I quoted you because it was very well said, i did not mean to offend.

Title: Re: Sunlight seems to have helped (title edited)
Post by Brew on May 17^th, 2008, 5:42pm

You could have fooled me. In fact, you did. Seemed like you were trying to take my words from two years ago and stick them up my backside (which would have been unsuccessful).

Title: Re: Sunlight seems to have helped (title edited)
Post by mattscott on May 17^th, 2008, 6:07pm

I don't comunicate my thoughts so well on a message board truly no disrespect intended! Quite the opposite.

Title: Re: Sunlight seems to have helped
Post by Annette on May 17^th, 2008, 6:43pm

on 05/17/08 at 16:09:16, thislemis wrote:

Since I've made this simple change, I have been completely symptom free. If you can think of any way that this might be applied to your situation, then it's so easy that it has to be worth a try. I'm not suggesting sitting in the sun, just making sure your brain is always aware of the day/night cycle so that it has what it needs to properly regulate its circadian rhythms I don't understand why you think that is a stupid idea? From what I've read, there seem to be many things that could cause CHs. Clearly there are others out there that are going to have the same triggers as I do. I felt I had a responsibility to report my experience to this community. If even one other person is helped by this, then it's worth posting here every day.

Welcome and thanks for sharing your experience.

I totally agree with you. If you have had a very irregular sleep-wake cycle with sleeping very late in the evening and sleeping in late until the next afternoon for a while then yes correcting it will definitely help CH. I have posted similar suggestions here before.

Its well established that CH tends to happen in REM. Not sleeping properly through the night will make you deprived of REM and your circadian cycles will be out of whack and the biochemicals will eventually also go out balance.

However, this is not a cure, as you still have a dodgy hypothalamus to content with. People like me ( I am a supporter, I dont have CH ) can mess up my sleep cycle all I want, and in fact I do working weird shifts can do so all of my life and still not get CH.

This also wont help people who already have a normal sleep wake cycle but getting CH via other mechanisms.

I think its necessary to stress that this method may help only those who have very bad sleep cycles on a regular basis and that its by no mean a cure or even a comprehensive preventive method on its own.

I am very glad it helps you though and best of luck. Take care and painfree wishes to you.

Title: Re: Sunlight seems to have helped (title edited)
Post by mezza on May 17^th, 2008, 11:39pm

thislemis-

glad you have some relief. we all wish there was 'a breakthrough' and one simple thing that would completely solve the CH mystery. Many of us have had cycles in the past that seemed to be suddenly broken and in our attempts to analyze what could have done it that time come up with various hypotheses. For me personnally , I have hoped they will never come back and when i have had remissions of 4 and 5 years, i let myself believe that they are gone forever, and that maybe , just maybe that cycle was it for me. But i am always wrong! They do come back for me and I realize CH isn't simple to treat and that I can't rely on 1 method but rather I need to be open to whatever might work for that cycle- all my cycles have been different and have gotten worse over time. Methods that worked one cycle have proved ineffective the next! CH seems to predictably unpredictable

So when i read your post- unfortunately my first thought was " Poor guy.... HE's in remission and he'll be surprised and sad if he finds they come back". Am i pessimistic or trying to burst your bubble? No.... Just cautious.

So i understand your hope and I do wish that better sleep habits will help you. I am always looking for any information that may shorten my cycles or keep them at bay for longer. So thanks for the tip!!

Kelly

Title: Re: Sunlight seems to have helped (title edited)
Post by kcopelin on May 18^th, 2008, 12:10am

Makes sense to me-good sleep hygeine is important-our circadian cycles are already screwy enough. I'm relatively sure that, in the good old days when I was episodic-those three to five weeks of the absolute minimal sleep possible did nothing to help the CH. Probably made it worse. But I was terrified of sleep-at the time I had no abortive so to wake up near screaming to a Kip9 with nothing to help...

Thank God for melatonin and benadryl. Also for becoming chronic. Takes the guess work out of the "Is it over yet" issue.

If your method works, awesome for you!

PFDAN
kathy

Title: Re: Sunlight seems to have helped (title edited)
Post by chefjohn on May 18^th, 2008, 2:46am

I am 50 and just entered my first cycle a month ago. I blame it on George Bush for changing day light savings time. LOL

Title: Re: Sunlight seems to have helped (title edited)
Post by thislemis on May 18^th, 2008, 4:26am

I wasn't expecting this response, I must admit. I've read this forum for years. I've stumbled across something that I haven't really seen before and I felt that I should share it.

All that I was trying to say is that "sunlight hygiene" or "day/night cycle exposure" might be something to add to the regimen. We spend so much time indoors, under artificial lights, because that's just how our world works. At the same time we know that we have a problem directly related (or so they think, at least) to our hypothalamus and our circadian rhythms.

It seems obvious, but I've never come across this idea put in these terms before. Just to be clear, I'm not talking about keeping a regular sleep schedule, I'm talking about exposure to the daily light cycle going on outdoors every day.

I've had remissions in the past. They've always ended as soon as my sleep hygiene slipped and, of course, sometimes for no apparent reason whatsoever. I probably haven't seen the last of the beast, but if this at least allows me to not worry about my sleep schedule, it's a good discovery for me and hopefully for someone else out there.

Keeping the windows uncovered and staying close enough to them that my days are much brighter (sunlight + indoor lights) than my evenings (indoor lights only and those kept dimmer than normal) has made a big difference. I happen to work from home and have control over my environment all day long, so I've been able to really go nuts with this idea and it seems to have helped.

Next time you are at the very beginning of a cycle when the shadowing has just begun, try spending the weekend near the windows, keeping the lights dimmer after sunset, and see what happens. As someone that's snorted more than their share of hot sauce, even going so far as making my own from habanero peppers because nothing else was hot enough to help, this doesn't seem like an unreasonable thing to try adding to the routine...especially considering all of the crazy things we do during an episode that don't do any good whatsoever.

Title: Re: Sunlight seems to have helped (title edited)
Post by monty on May 19^th, 2008, 11:22am

My sleep routines used to be very poor. When I improved that, my CH activity went down several notches. When it is hard for me to fall asleep, I take melatonin.

Title: Re: Sunlight seems to have helped (title edited)
Post by starlight on May 22^nd, 2008, 12:22pm

thislemis--

I think the not covering the eyes thing helping was more a coincidence. But what I can say is that your sleep habits are probably not the best when dealing with CH.
Sleep hygiene is really important. Going to bed and getting up at the same time.
Sleeping while it is dark and being up when it is light. Important. I would suggest to you going to bed an hour earlier each night until you get to a point where you are going to bed no later than midnight. Also, your sleep schedule is not good if you have any kind of mood disorder. I'm just telling you all this from experience--for example, last night I had a horrible night's sleep--this morning had a shadow--it's all cause I got thrown off. But long story short--please start sleeping during the night if you can. Take care, Star