March Headache and Migraine Disease Blog Carnival

Life Hacks: Tweaking Work and Life to Deal with Migraines

Great entries this month on how we live and cope with headache disorders.  Diana Lee has helped me gather the entries this month, and had a great suggestion for an addition.  Nancy Bonk has asked for a call to action from migraineurs concerning the problems we have getting taken seriously by healthcare professionals.  Please read her post Migraines, Stigma, Suicide - Stop! and give this subject serious thought.

Nancy has another great post This is How Migraines Have Tweaked My Life with some hints on how she makes it through each day with debilitating headaches.

A taste of South America spices up Betsy's migraine journey, described in La Migrana! at MigraineJourney.  Glad there are those of us who are able to have adventures in different countries!  A beautiful photo makes it look warm and sunshiney.  Sigh.

Teri Roberts at Putting Our Heads Together has some great info in Migraine Life Hacks: Dealing With Migraines. Terri has some great tips on managing migraine disease and triggers with some extra tips on using technology to leverage your day and some links to extra resources. 

While Tweaking Life for Migraines Migrainista has learned to be more flexible and innovative in dealing with migraines and their effect on her life.  Kelly at Fly with Hope has a great post about how chronic illness and migraines have changed relationships in her life.  I think we can all relate to Friendships Within and Outside of the Chronic Illness Community.

Kathy from Australia gives some great tips on how she is able to get around town using her trusty backpack!  I'm thinking I may have to invest in a sturdy backpack and a barometer myself after reading her post Sydney by Backpack and Barometer.  Gretchen at There Be Migraines Here has some great analogies in her Life Hacks post.  I will never be able to shake up a Coke again without thinking of this post and my head!

Diana Lee at Somebody Heal Me lets us know some easy tricks about looking good in her post Simplify Life with Migraines & Chronic Illness: Beauty.  Some very practical ideas and some recommended products that she has found helpful. 

More Than a Little Tweaking Required is the entry from Sue at InnerDorothy.  Sue lets us know how she manages her pain on a daily basis while still maintaining an active work life.  I love her comment "I relegate pain to a low place on my day to day priorities of living"  That's putting pain in its place!!!

I write a little about tweaking life and work environments in my post Taming Headaches.  Hope you find something useful in my entry!

This has been a great bunch of posts, and a great response to Diana Lee's blog carnival.  I found something new to me that I could use in every post.  Join Diana Lee in April for the next carnival!

March Headache and Migraine Disease Blog Carnival

Helping Diana Lee Out

I am hosting the March Headache Blog Carnival, giving Diana Lee a rest from Carnival hosting duties.   After realizing the amount of spam sent to the blog carnival address, I can see how she needs a rest.  Whew!  Below a description of March's theme that I hijacked off Diana Lee's website!

The theme of the March 2011 Headache & Migraine Disease Blog Carnival will be "Life Hacks: Tweaking Work & Life to Deal with Migraines." As always, feel free to interpret this topic however you like.

Feel free to post comments or contact me directly to ask any questions you might have. Please spread the word to any migraine or headache, pain or chronic illness bloggers you know and consider posting an announcement on your own blog if you have one.

For more information about the carnival please visit the main carnival page: Headache & Migraine Disease Blog Carnival.

Entries are due by midnight (the end of the day) on Friday, March 11, 2011. The carnival will be published here at No Extended Warranty on Monday, March 14, 2011.


Thank you for your continued support of the Headache and Migraine Disease Blog Carnival!

I want to do Diana Lee justice and hopefully pay it forward for her dedication to educating the public about all aspects of migraine disease.  Looking forward to reading some real entries, however I now know of a great number of sites that will educate me to be a nurse over the internet OR get me a job as a judge OR increase my sex drive OR maybe all of the above.  WooHoo! Win win!

One Lovely Blog Award

Thank You Diana Lee

Diana Lee at Somebody Heal Me has surprised me by nominating this blog for the One Lovely Blog Award.  I am sure it is all the beautiful renderings of my all time suffering big old head that is the Lovely part!  Thank you so much DL, I needed the uplift tonight!

Here are the rules from Diana Lee:

1. Accept the award and post it on your blog with the name of the person who has granted the award and his or her blog link.
2. Pass the award to 15 other blogs that you’ve newly discovered. (if possible)
3. Remember to contact the bloggers to let them know they have been chosen for this award.
   
    I am kinda worn out - I'm hoping to link to 15, not sure if I will make it that far, but I will try!!!  I hope I don't renominate anyone Diana has already nominated - my mind is a bit disorganized on day 3 of no sleep.

1)   Bits and Odd Pieces of the Kingdom by the Princess of Everything (and then some)
2)   Bury My Blackberry in Africa by the Partners for Care
3)   Chronic Migraine Warrior by Jamie Valendy
4)   Confessions of a Gypsy Princess by Gypsy Princessa
5)   Donna's New Day by dmlsexton
6)   Drivel and Whatnot by Heather The Driveler
7)   Elizabeth's Migraine Blog by Elizabeth Wakefield
8)   How I Visit Mickey Every Day by Kristen
9)   Living with Mastocytosis by Bridget
10) Mama Bears Thoughts by Debbie Jean
11) The Masto Mama Chronicles by Masto Mama
12) Migraine and Other Headache Disorders by Nancy
13) Through the Words of Chronic Pain by A Fighter
14) Walking on Water by tmkimberly
15) Sally's Adventures at MD Anderson by Sally

Check these out - some may be new to you, some may not but they are all "good reading"!!!  It's 3:30 AM and no sleep yet - I guess I'll see dawn without sleep one more day.

Pancreatitis Continua

Fed Up With Belly Problems

A disappointing week for me.  The pancreatitis continues to plague me with stomach pain and a particular kind of headache you get with pancreatitis plus my struggle with dehydration continues.  My leg problems persist and Dr. SassyPants who was so optimistic a month ago is now not optomistic at all.  I am going to delay my appointment with Cleveland Clinic because I am just not well enough to travel by myself, and my driving assistant who was going along is not able to drive this next week either. 

I was feeling very ill Monday, stayed home Tuesday with some severe pain and nausea went to the ER Tuesday night - found to be dehydrated, finally got fluids and got home around 1 am Wednesday (arrived at the ER at 3:30 PM Tuesday).  My lipase levels were normal which was good but I needed liquids.  Doctor orders were to go home, rest, TAKE my pain meds, take more nausea medication for at least one more day, and if it still persists go to my regular doctor. Already feeling dehydrated again this evening, even trying to take in more fluids.  Took the oxycontin and my other meds, just feel sick in an odd way.  I've had pancreatitis make me feel this way before.  Sigh. Last time it was this bad it took eight months to resolve.

The Headache has been on the edge of taking off  maybe because of the headache I get when I have pancreatitis.  It is sticking with me well past the hospitalization - not sure why - and it is over the whole head, just worse on the left side.  The fluids last night helped some of the pain, so it might partly be a dehydration headache also.  The inability to eat is sticking with me well past last week also, not feeling too whoopy without any real food either.  Very tired yet can't sleep, except when I try to do something that needs my complete attention (like driving) then I can't stay awake.  I think my mind is in Reverso land, everything the opposite of what it should be.

Dr. SassyPants plans for my treatment disappeared Monday.  I was rather stunned, but again he has probably read the eval by the physical therapists by now, and I reported that the epidural actually seemed to make my legs worse (weaker - having problems getting up from squatting or sitting on the floor) and my urinary incontinence much worse.  He suggested yoga or aqua therapy to keep me limber, and when I said my concern was I was to be at a hospital site in August and wanted to be able to stand and do the work even with the travel he said not to count on being able to do that.  In fact he said I may not be able to do much of anything soon with The Legs, since problems have seemed to accelerate this year. 

He encouraged me to see the pain management doc and get evaluated for a spinal stimulator to see if it can help the pain. He said no more epidurals, and did not mention the botox in the piriformis muscle again. I am upset and at a loss, because it seems I am back to square one again - except it is three years later from the first time I tried to get help and the disability is much worse.  No return appointment - just a referral to a book on pain and how it effects your body - not sure if I need a book on that - think I already know too much about it already!  Guess it means you are not going to get any better by any means of modern medicine.

I missed my appointment with the pain management person Monday because I was befuddled and forgot (Dr. SassyPants through me off my stride and the dehydration was starting to make itself known) I rescheduled for Wednesday and missed that because I have been very sick today.  Hope I can make a third appointment and keep it.

I am sick enough tonight I can't think very well, and am just doing this post so I can take up some time without thinking about hurting - but then what do I write about but how much I am hurting.  Doesn't make sense but I am feeling very confused.  A dark cloud is hanging over me the last few weeks.  I actually broke down and cried for a while yesterday when the pain was at it's worse.  I am not sure what to do, and as confused as I am not sure I should even be trying to make plans until I feel a little better.

On a side note, the Skunk eradicator device just turned out to be a Skunk Amusement device.  My sister watched two skunks stop and look at it - they seemed to bob back and forth looking at the little red motion detector light, then popped it a few times with their hanneypaws, milled around, stood on their back legs and swayed to the rythm of the red lights, then went right back into the hole under her porch.  She said it was like a little video game for skunks.

Diana Lee has posted her blog carnival for this month, and it is a great source of information about summertime and migraines.  Check it out at Enjoying Summer Despite the Heat at Somebody Heal Me.  Great advice in many of the posts about how to handle being out in the summer time heat while suffering from migraine disease.

Blog Carnival at Somebody Heal Me

Theme this Month : Food!!!

At last a theme dear to my heart, food!!  Diana Lee at Somebody Heal Me has done a marvelous job again editing her monthly Headache Blog Carnival.  This month's entries are about Food, Glorious Food!!  I recycled an older entry about brewer's yeast allergies, and there are some wonderful entries that cover the spectrum of food and its relation to headache.

I especially liked the link to Natural Pain Relievers: 20 Herbs that Work.  Found a few I didn't know about! 

If you are a Facebook fan, hook up to Diana Lee on Facebook - she posts some bonus articles that are great to share!

April Headache Blog Carnival Now Published

This month Diana Lee had assistance with her monthly Headache Blog Carnival, with Teri Robert hosting at Healthcentral.  The theme this month was Migraines in Literature, which was a pretty tough subject to write about.  A very interesting post about Harry Potter and headaches, and as always great miscellaneous posts dealing with headache disorders.

Also Healthcentral has published the results of the 2010 Putting Our Heads Together Poetry contest.  Some very thought provoking works! One of the Honorable Mentions was  Migraine Medication Change written by Migraine Puppet, whose writings have inspired me over the months!  Anyone who has changed meds to no avail will understand the longing expressed in this poem.

I even entered a poem of my own, the first I had written in probably thirty years.  It wasn't bad for someone as rusty as myself at writing anything but prose, and generally business writing at that!  Stretched my mind a little bit and expanded my horizons, but it was very difficult work for me.  I think I probably should practice more at poetry, but not sure if I have the right amount of connectivity to the right side (creative side) of my brain.  Maybe I could get rewired?? 

Here's my little poem below with references because for whatever odd reason I went all Greek pantheon with this....

Hemicrania Continues.... 

Spawn of Hephaestus
Burning ganglion eruption
Burrowing deep to forge another
Twisting turning barb wired spear for
Promethean sport.

The Algea dance maypole madness
Winding hypothalamic strands
Of cascading neuronal darkness
Straightjacket tight
Extinguishing all thought.

Achelois attends blessed by Lethe
Needle driven tonics flow
Down the Phlegethon torrent;
Saved once more from Tartarus
Deimos weeps.

The key to the terms:

Hephaestus: God of Fire and Metalworking
Prometheus: God of Forethought, Stole fire from Hephaestus and was tortured for it
Algea: Spirits of suffering, pain, tears, and distress
Achelois: Moon goddess of Pain Relief
Lethe:  The spirit of forgetfulness and oblivion
Phlegethon:  The underworld river of fire and pain
Tartarus: Hell, the place of ultimate punishment
Deimos: God of dread and fear

Did I get metaphysical or what??  Pretty bad when you need a scorecard to keep track of the deities.  Makes me laugh!! I had a good time doing it, and that's what counts!!! Thank you Migraine Puppet for inspiring me to try!

Tired of Winter

Ready for Spring

I'm tired of dreary weather, and I'm ready for spring to be here.  I want green grass and warm breezes, shady trees and flowers blooming.  I'm also just plain tired, so spring come soon.  I'm waiting for the robins!

I'm at that tired point right now that I can't rest because of it.  The fatigue keeps building, and I just get more tired rather than more rested.  Wishing I was younger and had that stamina that wouldn't stop for anything.  Too tired for words and unable to fall asleep, a combination that is a no-win situation.

Diana Lee has published her newest Headache Blog Carnival about Opening Up to Family and Friends at her blog Somebody Heal Me.  As always there are some thought provoking entries.  I am so glad Diana Lee is able to coordinate this in spite of her own disabling headache condition.

Scientific Proof of Photophobia Link with Migraine

Not Surprising to Migraineurs

Read an article today that gives a scientific explanation for the pain that light creates for many migraine sufferers. Those of us who have photophobia know that the problem exists, we just don't know how to stay away from light on a permanent basis.

The article entitled "Why Bright Light Worsens Migraine Headache Pain" at http://www.sphere.com/ states that a study was done with blind migraine sufferers, some of whom could sense or see light, and some of whom could not. The migraine patients who could not see light had no difference in pain when exposed to light, while the patients who could sense light had increased pain on light exposure. The resulting theory is that the optic nerve itself and its functioning and connectivity is related to photophobia. The author states:

They tested out these ideas in a lab, by injecting dyes into the eyes of rats with migraine headaches. By following the dyes, the researchers traced the path of the melanopsin retinal cells through the optic nerve to the brain, where they found a group of brain cells that became electrically active during migraines.

"When small electrodes were inserted into these 'migraine neurons,' we discovered that light was triggering a flow of electrical signals that was converging on these very cells," Burstein said. "This increased their activity within seconds."

And even when the light was removed, Burstein said, these neurons remained activated. "This helps explain why patients say that their headache intensifies within seconds after exposure to light, and improves 20 to 30 minutes after being in the dark."

I hope physicians that are skeptical about the light dodging habits of frequent migraine and other primary headache sufferers read this. We aren't imagining that light can trigger headache pain, and that light can make headache pain worse. We are experiencing an electrical storm that is either ignited by light exposure or incited to greater levels by light exposure, and that this storm doesn't stop the instant that light levels are lowered. Hoping that this research can either lead to a way to stop light from triggering or worsening migraines, or a medication that can assist in gaining light tolerance.

Maybe designers of emergency rooms could take note also, and have an area with dim lighting for headache patients to wait in. Migraine patients are already in a lot of pain before they ever hit the emergency room, because no headache patient willingly goes into that environment of noise, light, and odor unless they have no other alternative for pain management. A quiet dark area where you could wait your turn would be a welcome change from the normal bright fluorscent light.

Diana Lee at Somebody Heal Me has coordinated and published the January Headache Blog Carnival. The subject this month was "Healthy Habits for the New Year." As always there are a variety of submissions, with my favorite being about how behavior can increase or decrease pain tolerance. Please drop by and check out this month's offerings!!!

December Blog Carnival

Dianna Lee has done it again!

The December Headache Blog Carnival has been posted. Terri Roberts is this months hostee (or is that hostess?), with help from the ever organized Dianna Lee.

The theme this month is Advice on and experiences with reducing holiday season stress. There is plenty of interesting reading and helpful hints, so click on the link and enjoy!

November Headache Blog Carnival Published

Thanks Again Diana Lee!

Diana Lee at Somebody Heal Me has done it again. Another edition of the Headache Blog Carnival is out, this time on Migraine Triggers. Diana takes the time to do this, even when she is busy battling her own headache demons.

Diana contributed a great article from her archives on headache hygene, and James Cottrill has some fantastic tips on how to read food labels. I did not realize there were so many different ways to label MSG. I knew it was often a hidden ingredient but never figured it could be labeled with all those descriptions. I managed to sneak my entry on triggers vs. symptoms in this month.

Not included in the blog carnival, but still relevant, is the blog entry on the discovery of a new food trigger by Chrissy at Through The Words of Chronic Pain. This is what inspired me to write about triggers also!

I will be leaving in the wee hours of the morning to go to KC tomorrow. About an hour and half sleep last night, and already sleepless tonight. Can't medicate because of the drive. Big Sigh!!

Woo Hoo!! My 200th Post!

Who Woulda Thunk It??

This is my 200th post. I started this blog in January and I wasn't sure if I would keep it up. I thought it would be stressful to write and a chore to do. I found blogging to be exactly the opposite.

When I have been at my lowest points writing and illustrating another entry has kept me moving forward. When the pain is at the point that I am plumb wackydoodles being able to read different blogs about how others cope with unsurmountable obstacles helps me work through the pain and the panic. When yet another doctor appointment looms or more bad news comes I know I can toss my cares away into another posting and feel more optimistic. Comments by persons passing through my blog space keep me humbly grateful that there are so many kind interesting intelligent and funny people in this world, and that I get to interact with them. I am educated, entertained, saddened, and inspired by the many blogs I follow - impressed by the excellent quality, diversity and inventive nature of my fellow bloggers.

Despite the wondernment that I have had enough nonsense in me to write 200 entries, today has been a bad day. The Headache has been trying to come alive, he Belly feels like my pancreas is taking nips out of my innards, I had an incontinent episode at work (went home 45 min drive changed and drove back 45 mins) soooo embarrasing, I only slept two hours last night, and I feel like I don't even have enough energy to move because The Legs aren't cooperating. I feel exhausted. I have taken a cocktail of benedryl, phenergan, and trammadol and it is just barely decreasing the pain. I am going to change the settings on my stimulator one more time to see if it can put The Headache to sleep for the night.

On an upnote, Diana Lee at Somebody Heal Me has done it again and has put together another great Blog Carnival! I don't know how she gets these all organized and perfectly done each month, but I am so happy she does!! This month's theme is alternative therapies. I found some intriguing information, makes me wish that I lived in a more metropolitan area where some of these resources are available! A very interesting post was from MaxJerz at Rhymes with Migraine discussing the difference between alternative and complementary medicine or treatments. I definitely have been using these terms incorrectly as interchangeable! There were some other great links on other subjects too.

If this post is full of typos and misspelled words I am going to blame The Headache and The Meds. I've proof read it a couple of times, but when The Headache kicks in that is a gesture in futility!! I've got the jimmy legs so will be dancing with pain again tonight. Pain wouldn't be such a bad dance partner except he keeps stepping on my toes!!

Blog Carnival At Somebody Heal Me

I Participated in My First Blog Carnival

Diana Lee at Somebody Heal Me was kind enough to invite me to participate in a blog carnival. She sponsors one every month. I'm new to this stuff - so I'm very honored she was sweet enough to include my entry! Please read the entries - some great stuff there! The theme this month was "Misunderstanding Migraine"

Diana is going to get something called a "RadioFrequency Rhizotomy" to deaden some nerves in the back of her head/neck. I hope she finds complete relief from this procedure and keeps writing her blog to let us know about her new pain free life!!!

On another note - I am seriously starting to search for a good bicycle to start biking after I get the stimulator installed. Another blogger bikes in a city setting and makes it sound so inviting - I used to bike with a 10-speed long ago until an unfortunate accident in gear five with a dog. The dog was fine, the bike was fine, I had a fine case of road rash as I flew over the handlebars in full derailleur glory and kissed the pavement. Still have the scars!!!

I think I may look for a single speed old lady bike but will probably go to the local bike store to have one made to measure as I am under five feet tall. There are several great local bike trails I can use, maybe even bike to as I build my endurance. I think this old circus bike looks like my speed, and if I dressed like the clown I would maybe do better flips when the next dog attacks my bike like a buzz bomber! When I get the bike I will have to practice to circus theme music so I can get the full effect!

At home today, sleepy and medicated as The Headache is having a field day!