Migraine cycles

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Migraine cycles

Post  Cassiej on Sun Dec 22, 2013 8:28 am

As my mig are on a schedule of every 10 days and have been for over 6 years now, I keep trying to find a 10 day body rhythmn. Check this out

http://www.the-scientist.com/?articles.view/articleNo/33886/title/The-Sodium-Cycle/

Hope the link works, not well versed on computers. Anyway, sodium cycles in the body have a cycle of approximately 6 to 9 days. And, my particular body does not regulate sodium so I take florinef to help my body retain sodium, to raise my non existent cortisol levels and raise my chronically low blood pressure. About 6 years ago I began taking florinef on a regular basis as without it I was passing out. It had been prescribed for years but I took it sometimes and skipped a lot as I was very athletic and saw no reason to take pills to help me retain body fluid. With aging, it became obvious I couldn't skip.

Now, though fluctuating sodium levels may be the cause of my 10 day cycle, don't know what to do about it. My diet, via prepared food is low sodium as I follow a type of paleo, low fat diet. Basically try to eat food with minimal processing, no packaged, no food prepared outside the home, no gravies, sauces, mixes etc. And with florinef my sodium capture and use is so effective I need to watch my sodium intake.


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Re: Migraine cycles

Post  Reama on Sun Dec 22, 2013 5:27 pm

Hi Cassiej,

I guess I should have read this post before I posted my question to you on the ketogenic diet thread. Anyway, interesting article, and the link worked fine. I wonder if varying the amount of free water you drink might have a controlling impact on your migraine frequency? I can often abort a migraine if, at the very beginning, I chug-a-lug a minimum of two cups of water. Also, dehydration is a trigger for me.

I'm curious, if you don't mind posting, how you make a paleo diet low fat...I've tried paleo in the past but was uncomfortable with all the fat I was eating (especially animal fat).

Anyway, thanks for the article,
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Post  Cassiej on Sun Dec 22, 2013 8:30 pm

I buy meat from local butchers, well trimmed. Eat very small 3 oz portions. Last night tried turkey breast for supper and it tasted awful. But, at breakfast I was very hungry and it was pretty good! I am losing weight. Boiled chicken breast for supper tonight and couldn't finish it but again, it will probably be breakfast.

I am physically unable to drink large quantities of water. It truly just sits in my gut and isn't absorbed for hours. It's very uncomfortable. With enough Florinef, drug, I can drink a whole bottle of water and it is quickly absorbed. But, Florinef isn't Vit c and I manage it carefully. Florinef helps my kidneys work better processing all that liquid.

The other way all this works, I'm retired, children raised and low stress. When I was working and raising children could not do all these changes.

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Re: Migraine cycles

Post  Reama on Mon Dec 23, 2013 5:16 am

Gee, I'm sorry that the water intake has to be managed carefully; didn't realize that was part of the interaction with your medicine. I can see why 2 cups of water at a sitting wouldn't work! Still, I agree that there's some kind of connection with salt in many with migraine. I've read of others that have to very carefully manage their salt intake, though probably not to the degree that you do.

Thanks for the input on the low-fat way of doing a kind of paleo. I have been off all grains for 10 days now and am wondering where my migraine went this week, that I was fully expecting to show up, so maybe going grain free is helping. I'm finding it very difficult to stick to, though. My fat intake has gone up a lot as I cut the grains; maybe I can find a happy balance.

Yes, it's certainly easier to make the adjustments and dietary tests when there's not a family including kids to accommodate. I hope you can get some relief, soon. If you find a way of managing your migraine, please do continue to post!

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Post  Cassiej on Mon Dec 23, 2013 6:49 am

Once before in my younger life of work and children in my late 40s I think, I had a bad breakup with a lover at a time when I was working way too much and I had a psychological break. My stress load was very high. I just stopped eating as had no appetite, food was distasteful. Anyway, I normally weighed 130 to 135 at 5' 6 and went down to below 120. I stayed like that for maybe 6 months. Did you know they make a size zero? And, along with not eating I stopped sleeping. Could not sleep more than a few hours a night. Anyway, I later realized I had been migraine free for maybe the whole time. Then I thought I probably just didn't remember as was so upset etc. Was it no sleep or no food that saw the improvement?

Eventually started eating and sleeping again and migraines were back to normal. All that time I was under a neurologists care and not doing my own research. So, 20 years later, after retirement, I started doing research, and came upon a university study linking fat to migraines. I think it was Pepperdine U in California. I noticed all studies were over a 3 month period so that became my trial time. I cut out fat and saw an improvement. I was very happy with every 10 days.

A host of studies on various supplements caused me to maintain a $100 a month supplement habit. That caused a major decline in the severity of the attacks but I still could not live without pain control. Can't remember the drug of choice back then, probably Midrin. So softer migraines on schedule but still bad enough.

So that's the history of treatments. I still google university migraine research and if a trial shows 40% of patients showed improvement! I add the supplement. But, supplements soften the migrain, they do not stop the migraine.

Good luck with your process. We are so different that our journey is lonely at times. These sites help a lot. There is always someone out there suffering and only a fellow sufferer knows what we are talking about.

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Re: Migraine cycles

Post  Kem10 on Mon Dec 23, 2013 7:03 am

Wow Reama, that is really kind of similar to something that happened to me about 25 years ago. I ate very little though I did sleep as I recall and just as you did went down to about 125 at 5'6". I don't think I had headaches for a good length of time either. Hmmmm...I don't like being hungry but it is better than a migraine and losing a big chunk of life.
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Post  Cassiej on Mon Dec 23, 2013 12:10 pm

I've started using hypnosis to control the hunger. I use the app from Mindiff. All sorts of topics are available for hypnosis but going into this period of super control I'm using an app on weight loss and an app for sleeping. The weightloss app is good because the basic diet in the hypnosis is a high protein Atkins type with low carb. The sleeping hypnosis app is for falling back asleep after waking. I fall asleep each night with ear buds and weight control hypnosis playing on my ipad. If I wake in the night I select the falling back to sleep app.

I've also tracking my carbs using My Fitness Pal app. So if the goal is 25 g of carb I'm having trouble getting below 100 g a day. And I measure and weigh food until it's automatic. However, it's a long, learning process.

Coconut oil I'm using 1/4 teaspoon a day in my morning coffee for a week, then 1/2 teas for a week etc. Changes very slowly and the the 3 month test period begins once I am comfortable with low carb, sleeping ok, coconut oil causing no gastric or head issues etc.

I retired from work and started a full time job of tracking migraines and reading studies.

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Re: Migraine cycles

Post  Reama on Mon Dec 23, 2013 2:24 pm

Yeah, it's really a full time job, with all the record keeping if you log daily food intake, exercise, sleep, menstrual cycle for younger women, job variations, weather/barometric pressure, computer hours logged, stress level in general, etc. Explains why this is so very very difficult to get a handle on. I'm glad you have the time to do this, and please do continue to post anything interesting you find! I'm 51, with two kids 8 and 10 that keep me busy (and stressed), but still try to keep a written record every day at least of what I eat, as I still think that's a very big trigger for me.

Interesting about the prolonged calorie reduction you both posted...hate to try that, but if I get desperate enough, I will...

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Re: Migraine cycles

Post  Seaine on Mon Dec 23, 2013 2:27 pm

I just wanted to add that I also have had random days of no migraines when I didn't eat. I normally get a migraine daily, but every once in awhile I eat very little for whatever reason then notice that I didn't have a migraine that day. Unfortunately the trend doesn't continue into the next day for me.
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Re: Migraine cycles

Post  Kem10 on Tue Dec 24, 2013 5:06 am

I do wonder if it's the very low calorie count or if it simply is a further indication of some food trigger that we don't recognize. It might be interesting to keep food at a very limited variety ..for a few days and build from there. Don't know, just a thought. Likely pretty difficult till after the holidays anyway.
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Post  Cassiej on Tue Dec 24, 2013 6:57 am

Food has almost always been a limited variety. Eating without sauces, gravies, no mixed food. My goal is food in its basic form or as close as possible when traveling. But I was still getting every 10 days. Food in its pure form came about because eating would almost always make my head hurt. Migraine didn't develop till day 10 but always living with some head sensation. Every day something nibbling and poking at my brain after eating. I decided it was related to a rush of food induced something on my brain.

With limited calories and limited carbs I don't experience anything in my head after eating a minimalist meal. Meal? A 3 oz block of protein followed in a few hours by something else. I've read reports that people with gastric bypass surgery lose their migraines as well. Not a good comparison but they are on limited quantities after bypass.

And, with limited foods and odd diets we are on the same road as Chrones disease, epilepsy cures from ketogenic diets, etc

Keep experimenting

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Re: Migraine cycles

Post  Kem10 on Tue Dec 24, 2013 7:17 am

Thanks Cassie, you are likely on the right track. We'll be skinny and hungry but lots fewer migraines.  Smile 
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update on migraine cycles

Post  Cassiej on Tue Feb 18, 2014 8:11 am

A quick summary for new readers:  40+ year history of 18 days a month lost to migraines.  5 years ago started extreme low fat diet and fewer M.  Started handfuls of supplements and still fewer M.  Finally, for about 4 years a 10 day cycle of M treated by Zomig.  Every 10 days was great but I wanted more!  Acupuncture gave me 4 months without a M but the cost and having to live near an Acupuncturist made that treatment plan impossible.  

I changed diet to maintain low fat and eliminated grains except for oatmeal and corn and rice.  My cycle went to a Zomig M that lasted 3 days every 14 days!  Whoooho! An extra 4 days pain free!  And I did it without MD!  

Kept reading of treatments for chrones, epilepsy, gastric bypass, psorisis, etc.  All these, and more disorders, are affected by diet.

I went to a low carb diet.  It took about a month to finally get low carb but - my last migraine was January 31 so it's been 18 days without a M.   18 days is unbelievable.  I'm trying for a carb count below 50.  Now, in those 18 days I've many times thought - a M is coming because of auras, brain twinges, neck stiffness etc.  All the old signs of a M but a M did not develop.  On day 17 I thought for sure I would develop a M in the night as all my signs were in full force.  I skipped supper, went to sleep, and woke without a M.  I plan to keep my low carb diet for maybe a month? then start introducing foods and keeping count of carbs.  Is it carbs causing the M or is it a certain food?

I did the low carb because I believe I get M symptoms from anything that causes a rush to my brain.  So, a sugar high produces twinges.  Eating a full meal and having a full gut will always produce head twinges.  Fasting and then eating a normal meal will produce head twinges.    So far, low carb is great at M control.

The side effects of really low carb are not so great.  Talk about cognitive imparement!  Short term memory loss is pretty severe.  Fatigue is constant.  And, I fear some day I may go Postal and attack somebody's plate of pasta.  I have a big dip into depression every day about 10 am - low sugar probably.  

I'll keep you updated - but I'm going for a M free existence even if I look anorexic.   I keep my motivation high by remembering the cost of Zomig, the lost days of my life, the inability to ever plan an outing.  You know all the reasons.

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Re: Migraine cycles

Post  Kem10 on Fri Feb 21, 2014 1:20 pm

Oh boy do we ever know all the reasons. I have been struggling along in this rented condo with a poorly equipped kitchen but should be home in about a week. Hopefully can do lower carb at that point though I am close to being grain free but not quite. Still I think I have had fewer migraines than usual though I haven't kept track. Should do that I know.
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cassie

Post  dcook60 on Sat Feb 22, 2014 12:03 pm

you are surely a wealth of information and intelligence, to be able to figure out most of your food issues.

like you, i've been struggling with this godawful pain for 45 years, and yet still have to work at an advanced age.

i live on lots of triptans for my daily M's; they help me get out of bed and function but don't get rid of the pain, by any means.  no other drug helps one whit.

as one can imagine, i've tried multitudes of things, both sane and not, for all these years.  i've had 3 nose/sinus surgeries which failed to help.  

here are 3 questions for you, should you care to answer either here, or in a PM.  1.what sort of doctor was savvy enough to diagnose your low cortisol level?

2, do you still take florinef for sodium regulation?  also, do you eat added salt in your food?

3. since this is a steroid, i'm wondering if you can stay on it long-term, and have you had any significant side effects?  

my head hurts too much right now to see if you have already discussed these q's. thanks a bunch, dianne
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Re: Migraine cycles

Post  Cassiej on Sat Feb 22, 2014 2:22 pm

no problem with questions. glad to share

I had 2 different cardiologists come up with the diagnosis. I have erratic heart beat which is not life threatening but acted up every time I went to a neurologists. They always thought I was about to have a heart attack when they listened to my heart and wouldn't work with me unless a cardiologist oked the meds etc. So cardiologists noted the excessive low blood pressure, gave me a tilt-table test which I failed and just assumed I had low cortisol due to my reaction. Florinef was prescribed and I took it a bit but didn't really buy into the cortisol problem as I was an athlete at the time. Running, long workouts, not an ounce of fat on my body etc. Anyway, the problem was as long as I was running I was fine. When I slowed down I'd just about collapse. But, I managed being off and on Florinef. Then mid 50s, still trying to conquer migraines, I went to a holistic clinic in Florida and through Life Extension (magazine & supplement sellers) they ran a full batter of tests - Cortisol levels showed practically non existent. So, next cardiologist said Florinef and I started taking them on a regular basis. I've been taking daily for maybe 6 years now. And, if I skip too many days I will pass out.

I still take Florinef but, during the winter, not sweating, not gardening, etc I will take 1/2 a tablet a day. If I start feeling dizzy I go back to a tablet. Summer and gardening and sweating I may take more or up my salt intake. I also watch my BP as Alieve taken for headache can cause my BP to shoot up due to the sodium.

I will probably be on Florinef for life as I have some malfunction that disrupts my use of sodium. In my younger days I would eat orange slices rolled in salt. I could never eat enough salt. With Florinef I can absorb salt.

All this being said, no-where have I found a correlation between my cortisol levels and migraines. And, Florinef did not help my migraines.

Good luck in your search. We are never to old to get rid of migraines.




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thank you, cassie!

Post  dcook60 on Sat Feb 22, 2014 4:43 pm

i much appreciate all your details.  supposedly (alternative clinic/questionable testing) i have low cortisol also.  whatever the m.d. there prescribed many years ago for that condition, didn't do a thing for my migraines. it wasn't a steroid.   as you said, probably little or no correlation.

you sound a bit like sailingmuffin, who passes out all the time.  she's tried a ton of things, also.  as for me, i had the til-table test (once only) and was just fine.  my b.p. is normally very low, though, and i have no heart issues.

life is a puzzle!  it's a puzzle i am mighty tired of trying to solve, but thank goodness for people like you who are willing to share new info and research.  dianne
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p.s.

Post  dcook60 on Sat Feb 22, 2014 4:53 pm

i'm using the USDA nutrient database for looking up the carbs of veggies.  it says that broccoli is more carb-y than cauliflower, but both are low.  how can this be??

i wonder if you are eating any of the cruciferous veggies yet.  this counting will likely blow whatever mind i have left, and i'm now trying only to cut down a lot, not shooting for 20 mg/day as you are.  you brave person, you........

actually i have been avoiding grains for quite a while, but not totally.  and it's so discouraging that everything has carbs, isn't it!  dianne
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Re: Migraine cycles

Post  Cassiej on Sat Feb 22, 2014 8:08 pm

Yes. Everything, everything has carbs. But I have no migraines! Headaches and twinges but no migraines. I don't even have icepick jabs. After no M for a month I'm going to pick one carb, sweet potatoes maybe, or black beans ? Anyway, then I'm going to overeat that one carb for 10 days and see what happens. Even now, with no M, still every 10 days I felt faint M signs that did not develop into a M. The no carb thing is only hard if you are in the kitchen.

I put the kitchen out of bounds and that helped a little. I listen to a dieting hypnosis tape every night. I fall asleep listening to the tape on my ipad. The diet stressed is close to the Atkins and that is low carb. That helped a lot. And, I actually emptied into the garbage 2 jars of homemade peach jam that I could not stay away from during my weak moments in the afternoon. During an especially difficult day I talked to the carbs and cussed them out. I had no shame.

Yes it's hard but this is war. And I'm cheap and don't want to spend my dollars on meds.

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Re: Migraine cycles

Post  Cassiej on Sat Feb 22, 2014 8:16 pm


I have Congenital adrenal hyperplasia. Florinef is the treatment of choice and Mayo clinic has a department specializing in this. I've met one other person with this condition. She didn't have migraines. Whenever I meet people with my symptoms I ask about M but no ones had M except me. So I eventually gave up on cortisol levels being a part of my M.

Hope this helps.

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Re: Migraine cycles

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