It's simply not possible to predict individual response to any given med. Looking at the evaluations of both of these meds (large groups of individuals' responses), neither of them are in the highest effectiveness group when used with Cluster.

Thanks for your input...read the 123 Pain Free and am going to give it a try. Why not? I am so easy breezy right now as I am not it a cycle. It is so unbelievable that I really ever reach this point where I cannot fully remember the pain...but such a wonderful thing as the experience is such a horrific one.

I have heard of melatonin helping people reduce night hits, but that is something people start taking at onset of cycle not something they take all of the time?

I really don't want to take the prednisone my next cycle and lithium sounds so serious...does it really work to stop the cycle? Does anything really work or do you just have to battle it out? Nothing has ever worked for me. I just have so little faith in all of these drugs beyond the abortives anymore...or the ever magic yet destructive prednisone.

I went around 6 months this year without even a twinge in my eye...beautiful. Lately, I have quite a bit of activity...

My new mask arrived in the mail today and my appt with Dr. Newman here in NYC is on the 29th. Soon I will have the oxygen and I am so hoping that it will be effective as an abortive for me.

Pain free wishes for all! Off to make dinner for my two crazy three year olds! 

Tate

I take nothing when not in cycle.  But I go 18-24 months between cycles. 

I'm very interested in how folks fare under the "Batch Regimen."  About a year and a half ago I totally changed my nutrition.  It is very anti-inflammatory, as is the Batch Regimen.  I'm convinced it helped stave off my last cycle.  I just completed a cycle and it's been 3 years since the last one. 

Anyway, good luck and much PF days for you!

Tate,

I'll lay it out for you as I think history is important.  It may be more information than you want/need, but if it helps someone it's worth it.  Go to the last three paragraphs if you want to see just the diet part with out the history and progression.

I'm 43 and have been episodic since I was 11 or 12.  I had always been healthy and active.  I played soccer in college, played some semi-pro, lifted weights, ran marathons, did some sprint tri's, etc.  My daughter was born in 2005.  She was a difficult child (no sleeping, colic, etc.)  I slowly got out of shape.

Fast forward to 2010.  I finally drew the line in the sand and declared I had to get myself back in shape and healthy.  I started CrossFit.  Google it and look for an affiliate in your area.  Best exercise out there, in my opinion (although there are similar things out there that I'm sure are equally as effective).  CrossFit is very high-intensity training.

In addition to CrossFit I started eating "paleo."  Google paleo if you're not familiar.  Basically, the concept is that our genes haven't changed since the caveman days and we need to eat like cavemen ate.  So lean meats, fruits, veggies, nuts, seeds, and good fats.  No grains, sugars, or anything processed.  I had amazing results, both in body comp and performance. 

Turns out, grains are the devil.  Our bodies are not equipped to handle grains.  We are all gluten intolerant, or have a celiac response in some way or another.  Granted, it's worse for some than others.  And some bodies are able to process it better than others.  My blood type is O, which is the oldest blood type, which implies my body has less of an ability to process grains than others.  I found that my body simply does not like grains, or starches for that matter.  Our bodies have an inflammatory response to grains (which makes me think there is a tie-in with the Batch Regimen).

In May of last year I took the paleo thing one step farther and started zoning it.  I had absolutely amazing results.  Again, every individual is different, and there are tweaks you have to figure out for your body and situation, but I really found what made my body the healthiest it's ever been.  I'm 44 now and in the best shape of my life through the change in nutrition and CrossFit.

I passed the 18 month mark, then the 24 month mark with out going into a cycle.  I know that cycles change, but I'd never gone 24 months w/o a cycle.  At 30 months I started thinking what had changed.  CrossFit and nutrition were the only things. 

30 months was last spring.  I was doing paleo/zone until the summer, went to the beach, ate like crap and drank like a fish, and returned to an incredibly stressful period in my life.  I kept up with CrossFit, kinda zoned, and slipped from eating paleo a bit more.  At 36 months, another cycle started.  I'm just getting out of it now.

During the cycle I slipped a lot.  I was getting hit up to 5X/day, mostly at night.  I simply didn't have the energy to work out or do proper food prep.  So I fell off the paleo/zone wagon.  I'm just now climbing back on.

So to answer your original question, here is what I do:  My food choices are paleo.  I eat meats, and all sorts of veggies.  I try to do grass-fed and organic, but that can get expensive.  I eat fats, mostly from olive oil, coconut oil, and avocado.  I eat no grains.  No breads, nothing processed.  I eat virtually no dairy, but sometimes I'll have a little bit of greek yogurt.  I eat no potatoes, but I will allow a little bit of sweet potato or yam from time to time.  I supplement only with fish oil and a multi-vitamin.  I make choices based on what the glycemic index of the food is as my goal is to have a 0 insulin response.  So lots of berries, but not as many tropical fruits. 

I zone this, which means I get 40% Carbs, 30% protein, and 30% fat with each meal.  I eat 5 meals per day.  If you know what zoning is I aim for 18 blocks per day.  Let me tell you something.  When your carbs come from veggies, not grains and processed foods, you have to eat a TON! 

If I'm in a situation where I don't have control over the balancing of carbs/protein/fats (restaurant, dinner parties, etc.) I default to paleo and do the best I can.  And yes, I do allow myself some cheats.  I honestly have no idea if this has anything to do with going an extra year without a cycle.  I saw the Batch Regimen as being very anti-inflammatory, and there is a correlation with my nutrition as it is very anti-inflammatory, with some of the same supplementation.  Regardless, I will continue to eat this way because I've never felt better, looked better, or performed at a higher level than I do right now.  And all my blood work and vitals are perfect.

Hope that helps!  Post or email me if you have more questions.  markca9688@yahoo.com

Mark

Mark,

I looked up Crossfit. Wow that is intense. I completely buy into the fact that a clean diet affects overall health...and am hoping that the changes that I am making postively contribute to my cluster headache experience.

I know what you mean about eating a ton. I walk for 1 1/2-2 hours in Central Park every morning and do some light weights at home and work out with a trainer twice a week. I am 5'3" and just under 110 pounds and if I dont eat ALOT I drop weight fast. The fact that I am also on topamax and have cut so many foods out of my diet, including alcohol, makes it even harder to keep weight on. I live around the corner from a health food store where I go for different juices and oils, etc. I am actually starting back to school in January for health counseling. A friend and I want to start a sort of wellness lifestyle and fitness business for women needing personal motivation and wanting to make positive health changes, so I would also like to get a personal training license...so many things...I should probably email you.

Anyway, awesome that you are in such great shape and so healthy!

When you had the headaches as a child were they the same as they are now? I had pattern headaches in second grade that I can recall...certainly not as intense as now, but I remember getting them at the same time each day. Made the rounds to the eye doctor, dentist, etc...

May you go another 3 years and beyond!

Tate

JHK07 wrote on Nov 23^rd, 2011 at 10:26am:


Funny you ask that.  There are groups out there that claim cavemen lived for a very, very long time.  I'm not sure if I believe that simply because they had so many other things to worry about.  Like, what happened when you broke your leg?  Did you just lay down and die?  What if a dinosaur started chasing you?   

There are some fringe groups that make outrageous claims about paleo eating.  I just know it works for me.  And in the end, can it be bad to cut out processed food?

And barley, in the form of malt that is later fermented with hops is definitely good!!!

Tate wrote on Nov 23^rd, 2011 at 6:22pm:


Fully understood why you would pull a sustained high dose prednisone stunt like that because in a state of desperation I've done it myself. At that time though there was no internet, no knowledge of high flow O2, no imitrex even.

I think it would be a huge mistake for you to consider that prednisone abuse route as any sort of option for the next cycle. Being in a wheelchair is just one of the disasters you'd encounter, and you could go ahead and just kiss the 'ol immune system goodbye.

The Clusterbusters  approach for instance tends to be an extremely effective preventative and IMO it's a zillion times less risky than the pred abuse. Glad to see you're planning on the high flow O2, and that you're researching the latest CH fighters. I think with the info you're gathering you'll build up a powerful CH fighting arsenal that won't come with the high risk of destroying your life, and desperation moves won't be necessary.

Mark,

I find it hysterical that I have a condition where I am planning to practice these extreme exercises called "burpees," where I jump into plank position and then into standing while suffering pain or while about to...at least I can laugh about it now. Whatever works I am up for.

I went back and reread a prednisone thread that I had commented on and now realize you had directed comments to me re pred over there. I do know the dangers of pred use, and am trying to find suitable alternatives. I have tried many things over the years, seen many drs, I am continuing to educate myself...I am seeing a new dr next week, will be getting an oxygen tank, have changed my diet since last cycle, quit alcohol permanently...I am trying...

Have you ever tried zyprexa??

A Vandy game? I don't know what to say about that one. Those are tough. They were tons of fun in college, but now I just try and avoid the pain. I grew up in Birmingham and my mom graduated Alabama and my dad did his MBA there. But, my heart lies with Georgia Tech. My brother lives in Atlanta, spent some time there this summer...

Yes, VERY thankful not to be chronic. I feel so grateful for these reprieves where we can forget...my problem for years is that is exactly what I would do. In between cycles I would not breathe the word headache...no research, no planning, nothing. I have never charted a single thing. I was so afraid thinking about it would somehow bring it on again. This, of course, did me a great disservice. I dont have much of the vital information I need for my doctors...I was not as prepared with the new advances as I could have been upon new cycles starting...But, that is why I am here now. I am changing so much about my life currently...controlling what I CAN. We all know that there is so much in life that we have little or no control over. But, the *new TATE* is taking control of whatever she can. I feel good.

Thanks Mark!

Happy Thanksgiving again! Saw the parade today with my boys and their smiles were priceless.

Tate

Thanks Joe!!

Thanks Bob. So, re the Zyprexa, how dies it compare to Imitrex? The injectible is all that works for me and if it is going to work takes around 7 minutes. But, the rebound affects are ridiculous! I usually have quite a few headaches per 24 hours. How many times can you take Zyprexa per day? Thanks again!

Mark,

My husband informed me that Vandy won the Kentucky game big time. Was for sure because I was not watching.


Tate

Hey Crossfit,

You sound anything but lazy.

Will certainly give the burpees a try, but hoping it won't be for a while.

I am in the waiting room of new dr... Looking forward to hearing what he has to say.

Tate