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Fabalicious

Update on the new lifestyle

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Hey everyone! Many apologies for my lack of posts this past week, but my beast is calmed down a little (only getting hit 2-3 times a day now, and has not been above a 6, WOOHOOO!!) But in a previous thread I stated that I was going to start a healthier lifestyle to reduce stress and report back the results, so here goes.  First off, I really kinda balked at the idea that I had stress, I have had problems and events of stress in  my life sure, but I got through all that, and now since it is in my past it does not affect me right? well that was my thinking anyway.  Then my little brother, who is a psychologist working at a large college that does a lot of research, wanted to try some of his research on me. First he interviewed me and asked me a LOT of questions, the gist of this was to find out where I thought my own stress level was at.  The results were that my stress level was very low, almost non existent. (keep in mind that this was MY thinking) Then he gave me a little questionnaire that is designed to measure actual stress levels, including repressed emotions, buried feelings etc.  Anyways after I took his little "stress test" , he took my results back to his lab and ......lets just say my score was high enough to get the attention of the doctor who was running the whole research study.  In his words it was "off the charts".  Seems like I internalize everything, and though my mind thinks I deal fine, my body is telling a different story.  Neither of these gentlemen believe that the hidden stress is the total cause of the clusters, but the think it might be a factor in the frequency and the intensity. So theres that.  Then I started a regimen of yoga, healthy eating (organic and raw foods at least for 2 meals), I am also taking the time to meditate every day. This was VERY hard for me, I had a tough time even sitting still, much less getting my mind to quiet down and clear out.  I started with just 15 minutes, and for the past week I think I can actually get to the "zone" for about 5-7 of those minutes.  I keep on plugging away at it, eventually I will get there.  The yoga is REALLY helping.  Not really with the CH but it help my body feel more relaxed and stretches out all those muscles that get all tensed up during the attacks ( even some muscles I didnt know I had..lol) Sooooo, is it a coincidence that my CH slows down the same week I try all this ? For the record I was also using seeds, but took my last dose of them and am now off of everything in anticipation of my crop maturing ;D. Will keep you all posted. So far so good. HUGS and PFW!!!   

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You seriously should consider reading Dr. Mate's book: "When the Body Says No". Your post is basically a summary of the book! Or at least suggest it to your brother. It's fascinating stuff, and I believe it holds a key to understanding where CH comes from.

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This is so great to read, Fab! 

I'm curious -- Do you think that being "discovered" by your husband during an attack (which you wrote about in an earlier post) has somehow made it easier for you to make these lifestyle changes?  One thing I was surprised by in the personal stories in that booklet "Living with Cluster Headaches" was how much effort some people with CH go to to hide their pain from others, and I wondered as I read that whether hiding the pain from others might be a deterrent to trying "unusual" things to address the pain.

From a research perspective, it's just too darn bad that you've also been having such good results from the RC.  As you say, it screws up the assessment of the variables.  :o;):o

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You're rockin' it Fabac. Regarding past events, stress and that sorta krap, you're upcoming crop is being shown in studies (and personal accounts here such as mine) to potentially be a heckuva PTSD killer.  :)

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Fabac,

If Yoga is helping how you feel, you might want to try Kundalini Yoga.  It's a blend of mindfulness, mediation, physical stress / exercise, stretching and setting positive intentions.

There aren't very many studios that teach it, because it's a lot more than just physical exercise. 

I practice once a week (Some day I plan to get to a point of 3X a week!) :)

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It is surprising how little we tend to look at stress, and it looks like pretty much every CH'er who gets tested is off the charts. I guess this is because we all think we are fine... until we have a melt-down from PTSD. I do not see stress as a cause, more of a symptom... or something integral to CH. In any case, something to deal with or pay the price!

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Thanks y'all! I really appreciate all the encouragement! CHFather, I think you are probably right about my coming clean to my hubby and my family as a whole, exactly what we have to deal with when we are in the throws of an attack.  Knowing that they know, I guess just takes a little bit of the pressure off.  I don't know why I hid it from them for so long, embarrassment, knowing how bad it looks to others and not wanting them to freak out, or worry, I don't know. But its nice now, they know they can't help me, but I also know that they are there, and just knowing that brings happy tears to my eyes. I am so grateful to them(more than they will ever know) for being there.  LT, I am downloading that book to my kindle as we speak.  Beej, Thank you...for everything, your support has been such an uplift. You are awesome! THMH and Razor, Yes, you are right, its helping a lot! I was wondering if yall have any tips on clearing the mind, or is it just something I gotta learn to do on my own? Cause I need a construction dumpster to clear out all the crap from my mind...lol and Diamond, I agree with you that stress is a symptom, but I think that buried stress might also be a cause. At least a catalyst. I am taking all my buried stuff out, one situation at a time and dealing with it and throwing it to the proverbial curb. I have enough on my plate now, without adding all the terrible things that have happened to me over my life still messing with me.  HUGS to y'all, and PFYs (pain free years)!

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I was wondering if yall have any tips on clearing the mind, or is it just something I gotta learn to do on my own?

Fab, the real meditators will probably have better advice.  I can tell you two things.

First, the "relaxation response" popularized by Dr. Herbert Benson is a pretty simple form of mind-clearing meditation: >>>Benson can be largely credited for demystifying meditation and helping to bring it into the mainstream, by renaming meditation the “Relaxation Response.”<<<<   At the bottom of this page -- http://www.psychologytoday.com/blog/heart-and-soul-healing/201303/dr-herbert-benson-s-relaxation-response  -- are the recommended steps.  I have to say that instead of the word "one," I liked using "Om." (I found that "one" did have suggestive meanings for me that were distracting.)  Some people find that relaxing background sounds (water, gentle chimes, etc.) can also help.  Tons of these on youtube and in stores.

Here's something I've done for many years, which I suppose might be considered quite a bit stranger.  There are some lovely mantras in the Hindu tradition.  I picked a short, simple one related to the "elephant god" Ganesha, "the obstacle breaker."  Found a youtube video that I could just play in a comfortable seated position, usually with headphones on. I would "watch" it (just letting the images be there, without paying much attention to them, or closing my eyes) and say the words along with it.  After a while, I could easily do it without the video, just on my own.

Here are a couple:

https://www.youtube.com/watch?v=rsNpEyu9TfE

'>https://www.youtube.com/watch?v=_h2rFVPCSPE

In Hinduism, these mantras are a form of prayer, invoking the help of the deity.  It is believed that they must be said in multiples of 9, with 108 repetitions being optimal.  (That's why the second video tells you that they could only fit 98 repetitions on the video.)  That raises two things. First, some Christian sects would see reciting this mantra as a sin, since it is "praying" to another "god"; second, if you want to respect the tradition and you're doing it on your own (without a video), you have to count each time you say it.  Eventually, I could confidently count it on my fingers, but one can also buy a "mala," which is a string of 108 beads for counting. 

I found that this mantra was just about the right length (10-20 minutes) and very refreshing.  One thing it has taught me is that the reaction I often have -- too busy, don't have time for that -- is related to how much stress I have let into my life.  I have plenty of 10-20 minute periods for other things, but when I find that I don't think have 10-20 minutes for just being with me and relaxing, something's wrong.

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I find sitting in silence to be useless... my mind is too loud. In line with what CHF has said, I recommend Hindu Mantras. If you can get your hands on this CD I would, it has calmed and healed me in the worst times.

"Love Is Space" by Deva Premal

Our busting materials tend to help clear the mind and sort through stuff (play music and meditate while busting). I also find playing an instrument to be a good meditation exercise. Don't worry about playing a "song", just use it as a tool to express the energy you are feeling.

Wishing you some good unwinding...  8-)

Edit: I enjoy the longer instrumental ragas at times for relaxing or drifting off to sleep... my highly recommended CD/Artist for that... "Healing Ragas" by Mandala (or any of their three CDs really, "Healing Ragas II" and "Moonlight Ragas").

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Anything Snatam Kaur or Krishna Das!   :)

I've found that since I started my regular doses of M, my busy mind isn't so busy anymore.  I can relax, and focus on nothing if I want to.  Actually thinking about nothing would have been impossible years ago.  One would ask, how do you think about nothing?  I do, by listening to Kundalini mantra chants, close my eyes, and just think about the darkness I'm in, how I'm part of the nothing that connects everything.  After a little while my mind drifts to a dreamy state, but I'm still very much awake.  I'll almost start dreaming while I'm awake.  Hard to describe, but very fulfilling. 

The more often I meditate, the quicker I can slip into a meditative state.  If I can meditate in the morning I always feel energized after.  If I mediate at night, I fall asleep.  ;D

;)

J

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Fab, random thoughts all over the place is how I started out. Just the ol sub conscious working through my life, thoughts and reality of CH. I'd go for 5 minutes and think I'm not getting anywhere. But I did and you will too and be stronger when you get hit from CH. hey, just wanted to thank you for talking about letting loved ones know more about what we are  going through.

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Wow, the music really helps a lot.  Maybe, like Diamond says, my mind is too loud.  I don't have any of the Hindu mantras or  chants on CD, so I ordered some of the recommended ones above. In the meantime, my daughter gave me one of her CDs of cello music.  It works much better giving my mind something to focus on, while allowing me to relax at the same time.  I cant wait till my new CDs come in.  Also, I like the idea of the counting beads while you chant.  I am not really worried about what any religious  leaders say (I believe in God and the universal flow, but believe that most religions are nothing more than a system of control wrought by greedy (insert bad word here) to get tax free money, much like our battle with CH, we have to figure out our relationship with God ourselves)  Sorry went on a rant.  And just from reading above, it seems I might benifet from meditating twice a day.  Hmmm gonna try it. The yoga is going great as well.  I can already turn my head almost all the way to the side with out pain.  Why did I not try this sooner?  HUGS to you all, hugs and PFDs!

;D

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Wow, the music really helps a lot.  Maybe, like Diamond says, my mind is too loud.  I don't have any of the Hindu mantras or  chants on CD, so I ordered some of the recommended ones above. In the meantime, my daughter gave me one of her CDs of cello music.  It works much better giving my mind something to focus on, while allowing me to relax at the same time.  I cant wait till my new CDs come in.  Also, I like the idea of the counting beads while you chant.  I am not really worried about what any religious  leaders say (I believe in God and the universal flow, but believe that most religions are nothing more than a system of control wrought by greedy (insert bad word here) to get tax free money, much like our battle with CH, we have to figure out our relationship with God ourselves)  Sorry went on a rant.  And just from reading above, it seems I might benifet from meditating twice a day.  Hmmm gonna try it. The yoga is going great as well.  I can already turn my head almost all the way to the side with out pain.  Why did I not try this sooner?  HUGS to you all, hugs and PFDs!

;D

Like John Lennon said   "Imagine no Religion"

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Glad you found something to help with stress releif . My first choice is always a sketch pad, bag of pens and pencils, and "my" relaxing music. I quote my because most would not classify any of it as relaxing, but it is to me. My mind is ALWAYS busy with ideas, worries, or mockery of the general public.

I also beat the neighbors dog for stress relief. Just kidding, I would like to! Little bastard hasnt' stopped barking for at least 15 minutes all day.

Just a casual conversation with a good friend, or playing with the kids is also a great relaxation method for me. If I sit still for too long I am asleep just begging for a cluster hit to smack me in the back of the head. I require movement or some form of interaction I guess. I would be curious to see my actual stress level as well.

~ Eric

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Eric, Lol My neighbor has a great dane.  When she barks it actually vibrates my spinal cord I think.  I have a need to keep moving as well, I wonder if that might be a side of the beast?  Cause sleep brings it on, therefore most of us don't sleep(normally), so subconsciously maybe our brain is keeping us moving and refusing to shut down to keep us awake so we don't have an attack?  hmmm never thought of it that way before...like the brain is hurting the body by trying to protect it from the pain. :-?

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Wow.....thats all I can say.  The new lifestyle, the new treatments, the beating and stomping and rending of the beast until he is a little tamer (not gone yet but OMG the difference). I can actually do other things now besides sit home worrying about the next attack.  This is too incredible to believe.  I went back and read some of my first posts, which were not all that long ago in the grand scheme of things, I can not thank you all enough, and when i say all of you and this site saved my life, that is no exaggeration.  I would not be here right now if it weren't for you! And who knows...maybe one day I will win that big ole Powerball jackpot and make a VERY large anon donation to help us with research! I cant remember if I told yall that my doc sent me to a neurologist because I was "out of their league"..well...on a familiar note he looked over everything and said theres really nothing else to be done outside of surgery, I didnt share my busting with him(didnt think that was a good idea) but at least I have an actual headache doc now..and the upside of that is...he is REALLY easy on the eyes, and has a fabulous bedside manner...OH COME ON!!! Us old ladies need our meditation fodder too you know!  LOL...HUGS!! Love y'all! PFW!!!! ;D

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he is REALLY easy on the eyes, and has a fabulous bedside manner...OH COME ON!!! Us old ladies need our meditation fodder too you know!

I'm no expert, but I think there's a difference between meditating and fantasizing.

All wonderful to read!!!

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Oh Lord...I am really the last person who should give advice...I still am such a noob.  And I can't take any credit for any of it...all I did was follow the advice of ...everyone...lol. Seriously.  If I had to make a list...

1) Read EVERYTHING I could get my hands on.

2) Got OFF the trex and everything else. (Trex is harder to quit than smoking imo)

3) Got O2.

4) "Came out" to my family and close friends.  I was very nervous about this but their support is unexpectedly amazing.

5) Started my garden

6) Used the seeds to give me a little help until my crop was ready.

7) Someone who knows a lot more than me suggested trying yoga, and meditation.  I was skeptical of this, thinking that there was no way my gimped up behind was going to do yoga, or my OCD self be able to sit still for proper meditation.  But, WOW...just the difference doing the (VERY MUCH) Beginners routine made my body feel SO much better.  You don't realize after so long a time of being "clenched" how many aches and pains it causes. This led to meditation.  Its hard at first ( I know, "how hard can it be to SIT there?", its harder than you think.) Meditation helps to calm the mind.  it works.

(?)  Still in process...I don't know if its busting, or the yoga/meditation, but the pain is diminished to the point I dont even notice it sometimes.  Because I felt better I also made the decision that my family and I eat like crap, and we are all WAY too busy, and WAY too stressed.  So we all now eat raw foods for at LEAST one meal a day (its not THAT bad, just think of it as one of those veggie/fruit trays people serve at parties), We DO have days where we eat something we should'nt, but since we started eating right, we realize how yuck we felt all the time,, and what made us that way, and some stuff is a lot easier to say no to.  This combo worked for me....so far /does the happy dance ;D

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OH we also started a family outing schedule. Where we all do something together WITHOUT the cell phones. For at least a day/evening a week and one weekend a month.  Don't care if you think you are too busy...you are going..done...lol. its been awesome thus far.

Hello life! Remember me? It's ON now! 8-)

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