Hi,

I am curious if any of you episodic clusterheads take any vitamins or melatonin when not in a cycle?

I should be getting my next cycle within the next 6 months and am trying to be as proactive as possible. I am on 175mg of topamax for a secondary headache condition, but I still get clusters while on the topamax. At least I did last cycle while at 100mg....

Thank you in advance for any advice/experience!

Tate  :) :) :)

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.

Go to the medications section, and read the posting, "123 pain free days and I think I know why" I'm on this regimen year round. I should start a cycle any day now.......Thanksgiving was the marker day last time....seeing if this regimen.....what we refer to as the Batch Regimen....might keep the beasty at bay this go round.  :)

Joe

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

Lithium doesn't abort my cycle, it just reduces both the intensity and the number of my hits, by as much as 60-70%. At the doses we use, I am currently at 1200 mg a day while on cycle, even my wife can't tell I'm taking it. I've had very little in the way of side effects. As far as prednisone, I do a 10-14 day pred taper at the very start of a cycle to give my lithium time to take effect.

I haven't heard of anyone using melatonin to prevent a cycle from starting, although once on cycle, many swear by its ability to stop the night time terrors.

Hoping the oxygen proves the magic bullet for you that it's been for me. It's totally changed how we view the beast in this house. He's lost a lot of his "fear factor.!"

Do start the Batch Regimen. Too many people are having way too much success for it to be just a fluke. And enjoy the hell outta those three year old twins. My little girls are 27 and 25 now, they grow up quick! ;)

Joe

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!

Joe,

I am enjoying every "energetic" moment of our two boys. ;)
They are definitely keeping us busy these days.

I know what you mean about the "fear factor." That can be as bad as the headache itself!

Mark,

I am VERY interested in your diet! I recently changed my diet and am still in the process of changing...have cut out soda, coffee, milk, cheese, red meat and am sort of moving towards fish only...

What is your diet like?

I typically get between 18-24 months between cycles as well. Never longer. My last cycle was the longest in length at 6 months...so, if my usual start date is the same that would be around June...if calculating from the end of cycle then I guess it would be a little further out, but who knows?

I am healthier than I have ever been. Only took me until I was 39. :)  Not sure that matters to the cluster headaches...

What do you take during cycle?

Thanks for your time and responses...all information is so helpful!

Tate :) :)

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

So what  was the life expectancy of a caveman ? ;)

I am glad that works for you.  What?  No barely?   I gotta have my barely. 

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 :) :) :)

Yes, the CHs were the same.  I don't think they were quite as intense for the most part.  I remember being very confused by them.  And nobody knew anything at that time.  Same thing in high school and college, but I remember them being much more intense in college (probably because I didn't know to stop drinking during a cycle- actually thinking if I drank enough the pain would go away not make the CH worse!).  I graduated college in 1992. 

Once out of college I had a few cycles.  That was starting when I was in my mid 20s.  They were really bad then.  Again, nobody knew anything.  Scared my then wife.  Heck, scared me, too!  That was the first time I remember thinking that if I had a gun there was a good possibility I'd end it all. 

Sometime in my early 30s my doctor said I had "cluster migraines" and gave me imitrex pills.  I got relief about 25% of the time if I took them within seconds of the shadow starting.  I thought that was good.  Then I got them during my first year finals in law school (2000).  That sucked.  Still, relying on imitrex pills and suffering a lot. Had them again in my third year of law school (2003) and by that time was married again.  My poor wife felt so helpless (and me too, for that matter).

I graduated law school in 2003, and I think in 2004 I started a cycle that was absolutely horrible.  During that cycle I found this website and also got imitrex injections for the first time.  I didn't realize insurance didn't cover all the injections so I'd try to use pills (didn't work) so still suffering through a lot of hits. In 2004 I decided to stock up on imitrex while I was PF, refilling the prescription every month.  2005 I got a cycle and used the imitrex injections as much as I wanted, not really knowing (or caring) about long term side effects.

Doctors still didn't know anything.  Next cycle in 2006 or 2007 is when I went to see a neuro, where I tried prednisone for first time.  Also had a stockpile of imitrex, but not enough and all the extra, more intense hits that I previously described I had to suffer through.  Then in 2008 I did the prednisone/imitrex again with same experience.  I read about O2 then but I don't recall there being a lot of good info at that time.  I thought I was doing well with the trex and prednisone. 

This last cycle it just seems the information on this site is so much better developed.  I tried O2 and it worked.  I figured out how to make it work better for next time.  And after all this time I am finally not 100% dreading the next cycle.

Of course, all that could change.  I could get my next cycle and nothing work......

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

So what  was the life expectancy of a caveman ? ;)

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?   :o

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!!! ;D

Hmmm...not fully dreading the next cycle...those are incredible words, Mark. I have never tried oxygen in the way people are using it today (tried it in 1997 with regular mask and low flow with no effect) and am hopeful that with proper mask, regulator, flow, what have you the oxygen will abort a headache for me and change my options...

I see Atlanta next to your name. I am from the South. I was attending Vanderbilt when I had my first headache in a bar across the street from my dorm. :) It was like nothing I had ever experienced. I kept getting them and finally went to the ER for the first of my scans and taps... My now husband and I had just started dating...must of been really attractive. ;)

Anyway, none of the abortives worked for me except the imitrex injectible. But, I get so many headaches day and night that if I use the imitrex for every headache the rebounds are off the charts. My headaches also average longer than an hour sometimes 3 hours in length. I attribute this to the imitrex...so, I am having headaches back to back, lasting a long time and never experiencing relief...which is why I just gave in and started masking the entire cycle with prednisone. I just couldnt take it. My step father is a surgeon and he would try to explain to me the horrors of prefixing use, but I would tell him it was either me in front of a bus today or me dealing with the effects of pred later...

My husband was in law school when I was finally diagnosed...he graduated 2000...

Glad to hear oxygen worked fo you. I am so hopeful. I admit it is going o take incredible strength not to down the pred at the first sign of my cycle. I have quite a few pills at home. But, I really am trying to be healthy and preserve my body and not end up in a wheel chair when my boys are 10...we shall see...

Nice to have a place where people understand the pain.

Happy Thanksgiving!

I am thankful for this place and so very very thankful to be pain free. May all of you be pain free as well!!!!

:) :) :) :)

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

... I just gave in and started masking the entire cycle with prednisone. I just couldnt take it. My step father is a surgeon and he would try to explain to me the horrors of prefixing use, but I would tell him it was either me in front of a bus today or me dealing with the effects of pred later...

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.

Tate,

One thing I neglected to tell you about this cycle.... There are some that have found abortive relief with high intensity exercise at the onset of a hit. I first read about this two cycles ago. I tried it.... Nothing.

This last cycle was different. At the first sign of a shadow I'd start doing burpees (google it). Knocked it out better than O2. Of course, tough to get up 4x/night and do burpees. But better than suffering a hit. Try it. Might work.

Yes, I'm from Atlanta. I was in Nashville last weekend. My brother in law lives there. We went to the Vandy v. Ky game. Fun. I'm a huge Bama fan, though.

Read the O2 section to the left. It'll make a huge difference.

When I first found this site I felt so lucky because someone finally understood the pain. I finally didn't feel like a weak sack of crap that couldn't cope with a little headache (as some thought). I feel luckier that I can benefit from the work others have shared here with different abortives. I went so long with no diagnosis, or bad diagnoses. I truly feel for those who are out there right now suffering the beast with no support. It's amazing how many people every day are just finding out that what they have is CH.

Arm yourself with knowledge from this site. Get an arsenal of abortives. Find what works for you, knowing it could change from cycle to cycle. We may never be "cured". But we can substantially decrease hits and intensity nowadays. It's a far cry from suffering through them all. God love the cronics. I'm fortunate I'm just episodic.

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 :) :) :)

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

Tate   

That's a winning attitude! ;)

Joe

Thanks Joe!! :)

Re. Zyprexa: A number of us have had excellent success with it. Using it for 2-4 attacks will give you a decent idea of whether it works for you.
=============
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

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 :) :)

Tate,

Regarding the burpees.....  There is nothing exciting or motivating about knowing a hit is coming and doing burpees (or any exercise, for that matter).  And two cycles ago I tried running, to no avail.  This time I decided to give it a try, figuring I can gut through a couple/few minutes before hitting the trex or O2.  I was absolutely amazed.  Total abort within a few minutes!  So that worked when I caught it early.  During the times the beast woke me up and I was already into the CH, I didn't try the burpees.  Just couldn't do it.  And it got more difficult later in the cycle simply because I was getting hit 3-4 times per night, and 1-2 times during the day.  I was just worn out.  Call me lazy....

Anyway, it worked this time and it's worth a try.

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 :)