A brick wall between me and life

[MoxieGirl]

I have a picture in my mind of me standing in front of a brick wall. The wall runs on for miles to my left and right, and is a mile high. This side of the wall, where I'm standing, is a baron waste land, on the other side is life.

The bricks of the wall are made from headaches, migraines and clusters.

Actually, my life isn't all that doom and gloom, calling it a baron waste land is a bit of an exaggeration. But sometimes it feels that way. If feels like no matter how hard you try to go forward, this wall is there, stopping you.

I shouldn't complain, I do have a successful IT company, am learning Sports massage, am a writer, ... life is generally pretty good.

But then there are the headaches that grind everything to a halt from time to time.

The one specific area that angers me the most is in physical exercise. I'm overweight. Although I've accepted my body the way it is, I would like to be slimmer. I would like to fit into clothes I used to wear. But physical activity is a major trigger for head pain of one sort or another for me.

Last year I went to a Yoga class with my best friend, and I spent an hour afterwards in bed, curled up in a ball crying my eyes out from the migraine/cluster attack I got from it. I mean, YOGA! You should see what happens when I do real exercise.

I haven't been back to the gym since.

As soon as the weather gets a little warmer I'm going to start walking. I want to get into the habit of taking long walks, maybe venture out for a few hours on the weekends. Walking often seems like the only activity I can do that doesn't trigger a headache, and swimming. I like swimming and will be starting that up again soon too. Guess my life isn't quite the baron waste land.

How about you?

Do clusters affect your body shape/size?

I know someone of you lose weight when you are getting attacked.

MG

[tangerinearmy]

we are all so very different which i suppose makes us humans interesting.

apart from drinking alcohol( and i dont mean a sip)i dont know any triggers

the only thing that i work harder on than stopping clusters is to make sure i carry on as pretty damn normal as i can,no way are they going to stop my life.there again thats easy for me as im episodic and i think about being chronic like i think about when i die a quick thought then shudder then stop thinking.

[spiny]

Moxie,

I lose weight every time. Sometimes I just can't eat. Other times, I am hungry, but the smell of cooking turns my stomach. Seems like I am always fighting to gain back the last ten pounds all year. You know, that ten pounds that makes you feel/look healthy and human again.

Currently trying to do some research on Serotonin in the gut and figure out the connection to see if I can find a reason and reasonable solution.  > Not much luck so far.

[ClusterHeadSurvivor]

MoxieGirl.

Wow, this thread hit home for me in more ways than one. I am not sure if you are aware but i write a blog about my life with Cluster Headaches.

The affects of CH has caused me to loose my closest of friends and while others tell me to "get over it", I can't help feel like that brick wall around me with no way out.

The weight gain (105lbs) not a typo. Has been devestating. whether i blame 30 days in a hospital bed,quitting smoking, eating crap, using a cane for almost 3 years and hopping on one foot for 5 months, whatever the reason. I am not whom i once was. inside ad out. When people I run into walk up to me and say "Holy f*ck, how did you let yourself go?" "Wow you look like crap", its does a number on me emotionally.

No matter how many times I wake up and deal with this brick wall , I look at my son and wife and think I have to climb this wall for them....for myself....and hearing about another CHr puts it all into perspective. A CHr who took their own life. Because of CH. I too been in that dark place where suicide was my only option. It sucks. I got lucky and got out.

In Feb 2 Chrs I know about committed suicide. In the same week a friend of mine died of cancer. So instead of complaining,I know someone took their lasts breaths. So I should use mine being positive,uplifting, and try to either help someone in my day or educate someone in my day. That gives me purpose.

I can totally relate to your post Moxie....just remember. Fall 7x. get up 8

Love ya, PFW

[Tony Only]

This brick wall analog is pretty perfect to me and I feel more or less exactly the same most of the times.

I've had this dream to do volunteer work for animals somewhere far, far away - this for me would (most probably) mean the lack of trusty old O2 plus the other preventative/abortive treatments (busting) would be unavailable. During last months I have tried how would I cope with my current CH completely "naturally" without O2 and busting. It has not been easy and have not been doing well. I know what I want but at the moment it seems impossible to get there.

Also had to reply on the Yoga subject. I can't give up on Yoga, no matter what. On my CH I have noticed it's not the increased body temperature that's the major issue (although it plays a role) but it's the increased temperature in my head that gets the ball rolling. I changed Yoga groups to a one where the space the lesson is has much lower average temp than others plus I wear such clothes that it's almost chilling when we start - yes, even Yoga can be very physical even when the movements performed are not very physical, it just gets the whole body going.

It's a new skill for me which I probably will always be learning, how not to panic and try to (literally) keep calm using breathing and limiting what one does (what's bad/good for me) during these sessions.

Still occasionally there's kind of a panic when that hypo starts to boil. I give up on that lesson, go to abort and participate the next one again. We should have clusterhead Yoga classes !

Thank you for this wonderful post.

[Pete M]

MG et al,

This demon that we refer to as CH tries its best to rob us of all the things we treasure in life: our family, our friends, our jobs, our health, our happiness and our sanity.

While this frustrates me to no end, I, like you, am determined not to let this demon rule my life. That is why I am so happy to have found all of you. Your empathy, knowledge and counsel gives me strength and hope!

As the saying goes "there is strength in numbers". I believe that together we are more powerful than the demon!

[NightCrawler]

I also lose weight every time.  I have lost 6lbs in the last 8 days.  Also makes my body temp higher too. My hunger always decreases.  Only able to eat one meal a day.  The hell we all go through.  IÂ’m thankful to found this site where people know the hell I go through.  I have learned so much from all of the info on this site. It has given me hope and I look forward to maintaining my pf the organic way! 

[MoxieGirl]

Wow! I didn't know, when I was writing this at 5am this morning, I was going to strike such a chord with everyone. I just wanted to let off some steam after being woken at 4 am with a pounding headache 4 days in a row.

Spiny, I have 10 pounds here you can have, and you too NightCrawler. I have more than enough to share. When I'm stressed or depressed, I turn to food, not away from it.

Tangerinearmy, ironically, alcohol isn't a trigger for me. In fact, I use to abort really stubborn migraines when the triptans don't work.

CHS - Yep, seen your blog. People are stupid, and don't waste your time on stupid people. Also, slightly ironically, I was several times more suicidal as a man that I have ever been with clusters. I had a tough year with clusters that had me thinking pretty dark thoughts, but compare that to 40 years in the wrong body. Clusters are a cake walk.

Tony Only - Dude, Yoga, ick. But not all of Yoga, it is really just the downward dog that does my head in, literally. The inverted position makes my head throb and gives me a headache, which turns into a migraine before exploding out into a cluster. Sham that about 70% of Yoga is downward dog. Pilates, now that's MUCH better. No damn downward dog. Better yet, Tai Chi.

Pete, this is a great sight only because it is full of great people. It's one of the criteria for joining. You gotta be awesome. You're here, so guess that means you are.

In 2007 I had a headache that lasted 7 months and was frequently punctuated with migraines and clusters. I call it my Year of Hell. 2010 comes in at a close second. I was getting 2-5 vicious attacks every 2-3 days for almost an entire year. The longest pain free period I had was about 6 days that year. I can safely say there was a time when headaches ruled my life. I backed out of visiting friends SO many times I stopped accepting invitations.

Then I started busting and I got my life back. Life is still what happens between headaches, but most of time Life is measured in weeks instead of hours.

I have a dream. I have committed this dream to a goal, and it is now my 8-10 year plan (still working out the minor details). Basically, I'm going to start learning to sail and eventually buy a sail boat. Most likely a 50' catamaran, and then I'm going to move onto the boat and out into the waters and go, as they say, off the grid. In between now and then I'm going to finish a couple books I'm working on and get published, in addition to a couple other money making projects I'm working on. My dream ends with me docked along the coast of a island surrounded by blue water and I spend my days writing.

That is what is waiting for me on the other side of this wall.

Anyone got a sledge hammer?

[Whooligun]

Headache sufferers are the toughest people on the planet. That's not a wall in front of you, it's a staircase. Life's a bit tougher, but you deal with it. Because there's no other option & because we are all tough mfers  >

[Bejeeber]

Wow you really did strike a wall chord there MG. 

Better yet, Tai Chi.

Yeah Tai Chi sounds like some good plan B thinkin' - the Tai Chi I'm familiar with doesn't involve any holding of the head upside down anyway. And how cool would it look (and feel) to be doing Tai Chi on the deck of your boat?  8-)

[spiny]

That's not a wall in front of you, it's a staircase.

  I like that one Wooli.    Some days you climb the stairs and some you don't.

Moxie - I would gladly take the weight from you!  But my husband has insisted that he is the number 1 donor.  ;D  He loses and I gain so it is a win -win in his book.

Most of my friendships are via the telephone. Otherwise, I make lunch dates. Midday is my best time to plan anything.

And, I love Tai Chi!!!! Unfortunately, the last class I took and the only one available up here has a poor teacher. I should look back into it and see if someone else is offering it now. Back in the day, I was into Kung Fu for several years. Now, my old bod needs the balance and grace of Tai Chi. Just need an instructor who faces the mirrors when he makes a correction so the whole class can get it!!!!!!

[Tony Only]

It's so much about the teacher; my 1st yoga teacher walked me inside. She showed me how yoga is more of a state of mind, anything you do in practice is secondary, peace of mind is essential. Now for me it's more meditation - a trip, really ! All the other teachers I have seen after her pale in comparison, for some it's just gymnastic exercises.

I often think nowadays if only I would've had this world when struggling with CH

[spiny]

Tony, you were lucky. For me, the teacher cannot teach the moves unless the whole class is included - even in the 'this way not that way' stuff. Not doing it facing the mirrors just confuses the other students as they cannot see the correction tied into the form. Nor how it fits.

I meditate sort of on my own, when I get hit. No training in that, but my other training has taught me to control my breathing and that is the first step. Proper breathing brings on peace of mind. Which I need when getting hit. Focus helps. For me, it is a 'stop the panic' routine now.

[Bejeeber]

Whoa Spiny - Kung Fu, AWESOME. Not having ever pursued any such training is a major regret for me.

I've learned my Tai Chi from an instructional DVD. Not the same as learning from a real live good teacher for sure. It could certainly even be considered an inherently LAME approach, but it has it's own advantages, such as being able to go at your own pace, unlimited rewinds for memorizing the moves, and consistent demonstration to practice along with daily.

[spiny]

Jeebs, I may just try that.  Course, I would have to push the men out of the house for an hour a day. ;D

I am glad that I practiced Kung Fu and competed for several years. I learned a lot more than just how to kick and punch. Mental control and breathing techniques are lessons I still use today.

[shya]

My Fiance was a bit cuddly when I met him but he soon switched to my Vegan diet due to my philosophy that Animals are are not products gor us to use.His weight in one year change from slightly over weight to slim and fit.He's still amazed.We dont really exercise other than a walk or gardening. Vegan food is the food thats under the cheese and the food beside the meat and no eggs.