Tuesday, June 11, 2013
Thursday, January 01, 2009 speckrig asks

Q: Is there an average age when hemiplegic migraines stop?

My headaches started at 12 years of age. I can remember it to this day.I thought I was dying. My left hand pinky finger began to tingle, and the tingle began to travel from the bottom of my finger to the tip and then progressed through my other fingers to my thumb,slowly traveling around my wrist and then up the bottom of my arm to my shoulder, leaving a dense numbness behind in every area that had tingled. This sensation traveled up my neck into my face, becoming most prominent in my left cheek as it slowly crawled into my lips. The sensation went into the interior of my mouth on the insides of my cheeks, including my tongue! Uncontollable salivation quickly became drooling as my face numbed and I would drool down my face without realizing it because my face had become numb. The tingle wound around my head through my temples into my scalp and then down the right side of my face, basically duplicating the sensations on the left side of my face and head. The tingle seemed to spin and twirl in my right cheek before quickly moving down into my neck and then past my right shoulder into my right arm. As it began to wind around my right arm to my hand, the muscles in my right arm began to pulse and twist visably, almost as if I were repeatedly using a grip strengthener over and over again at lightning speed until my arm muscles began to cramp and burn and then bind to the point of being as hard as a rock. My fingers would begin to bend and contort, resembling the digits of someone suffering from severe arthritis. At this point my peripheral vision began to go haywire as a spiraling,shimmering,spinning dead spot began to develop in both of my eyes. This visual phenomena caused dead spots in my vision from the center of my line of sight to the outer edges of my normal eyesight. I could hold either of my hands up and while looking straight ahead was unable to see them until they were directly in front of my nose! Then suddenly, the right side of my body from head to toe went numb. The right side of my face began to sag and the right side of my body began to feel as if enclosed in concrete. A slow steady pounding began in my right temple. I started sweating profusely and shaking uncontollably on the left side of my body. The tingling in my right arm quickly climbed into the right side of my face and seemed to lodge in the right side of my head where the pounding was beginning to turn into a sharp,intense overwhelmimg pain the likes of which I had never experienced before, but would come to know very well in the following years. Sudden violent contractions in my stomach began causing projectile vomiting of Olympic shot-put distances, causing the pain in my head to explode,bring me to my knees. My vision slowly collapsed to where only two small pin-sized holes directly in the center of my vision wre the only clear things I couls see, the surrounding areas of my normal eyesight having become swirling seas of nothing,dead spots being the only way I can describe them. My nose started running,the drooling became foaming at the mouth,my ears began ringing and the pain became unbearable. I felt parched and dehydrated. In a desperate attempt to assuage the gnawing thirst I drank a glass of cold water only to have it fly from my stomach almost immediately and the pain would burst in the side of my head. I had grabbed the index and middle finger of my right hand with my left hand and positioned them on my templar artery and then using every ounce of strength I posessed pushed on them as hard as I could with my left hand, desperately trying to stem the pulsing,agonizing torturous pain in my head. Having curled up into a fetal position ball on the ground the people and family around me did not know what to do. They carried me inside and left me lying on the sofa with a damp washcloth for my forehead and a large bowl for me to vomit in. My thirst became uncontrollable, and the more I drank water the more I vomitted and the more my head exploded. I was crying ,sometimes whimpering,sometimes screaming, sometimes writhing so violently that they would lay on top of me in a vain attempt to calm me. This went on for hours until at some point I became completely incoherrent. At one point I remember coming to and someone gave me a pill of some sort and a short time later I passed out. This was the first episode.

 

This was the beginning of the dark times. The headaches quickly progressed in frequency of occurences and severity of pain. The warning signs of an impending attack became gradually more well defined. The variety of symptoms I would experience, both mentally and physically, became a sort of sick recipe from the cook book of my migraine headaches.

 

If the first sign I had was a severe numbness in my right arm, the headache would come on with lightning speed and intensity, usually within minutes of the initial onslaught, but would last only a four of five hours.

 

If the warning signs started as I have stated with first headache, then I had twelve to fifteen hours of sheer bliss to look forward to. Crawling into a dark closet became my refuge of choice, with frequent visits to the bathroom to chug water and vomit. Not being able to hold anything down, taking medication was useless until after hours of vomiting my body had no strength left to throw up what I took or swallowed. Even so, nothing worked unless it was extremely powerful and knocked me out soon after taking. Liquid codeine being one of the few that I was able to keep down.

 

Repeated emergency room visits always had the same results. X-rays,cat scans,spinal taps were the normal routine. I remember one E.R. doctor giving me Heperin(sp?) in a vain attempt to quell the pain. I think it was to thin my blood. He was spellbound(the nurse told me about this later) as he watched the vein in my right temple visibly expand and contract seemingly in time with my heartbeat. This is the sensation that using my fingers to push into my head attempted to stop or at least lessen, as every beat of my heart sent an agonizing,overwhelming throbbing pain to my head.

 

Finally, after ruling out meningitis and clots and strokes and allergic reactions, an i.v. would be administered(following repeated almost vain attempts to find a vein) to combat the dehydration resulting from the sweating and the inability to retain anything in my stomach. Finally someone would bring in a shot of Demerol or whatever, place it in the i.v. and as the burn from said medication would start in my arm, I would mercifully pass into oblivion. Frequently I would wake a few hours later, usually as a nurse or doctor would be taking my vitals and scare the living crap out of them as they would tell me that I should be knocked out for hours from whatever it was they had admnistered to me. That said, the pain never went away. My body simply collapsed, exhausted from everything I had been experiencing. The pain became somewhat easier to deal without the rest of my body freaking out. Sometimes the headaches would come on rather oddly, with a hodge-podge of the onset symptoms, none of them being severe, and the sensations jumping all over my body. The pain would then start in my left temple, becoming sharp and acute but nowhere near the intensity of a right side occurence. My vision would become erratic, but would never progress t the tunnel vision I usually experienced.

 

Here is the odd part. As I would try to talk, the words coming out of my mouth would be almost gibberish. Every word would be in English, but words would be missing or completely out of place in the sentences I would attempt to utter, completely scaring the hell out of the people to whom I would be attempting to convey a message to. These headaches would not last long, but the speech side affects would take a while to lessen. I would then in a few days, or at the most a week, experience a full blown migraine of epic proportions.

 

Thus, these left side headaches became precursors for severely debilitating episodes. As the time between occurences gardually became shorter and infinitely more severe in intensity I began to try to keep a constant vigil on what I could be doing that might be causing them. I read that aged cheeses, chocolate and even red wine might be triggers for migraines, so I completely removed these from my diet, to no avail. There seemed to be no rhyme or reason, and after repeated visits to numerous physicians, ranging from neurologists/neurosurgeons to orthopedes.

 

I finally found help, not a cure, in chiropractic adjustments. This came from a recommendation from a neurologist whose wife suffered from what he called cluster migraines. She went to a chiropractor and had her neck adjusted and experienced instant albeit very diminished relief. I found that if I was able to quickly visit my chiropractor for a neck adjustment at the first sign of symptoms, I would get a lesser headache but by no means no headache at all. Luckily for me my chiro suffered from migraines and could relate, quickly placing me in a dark room and carefully adjusting me.

 

After years of suffering, I have learned to keep liquid ibuprofen caplets at hand at all times as these seem to work best when taken within minutes of feeling an onset. I fear that I have done irrepairable damage to my heart from the constant projectile vommiting but there is nothing I can do. Immotrex doesn't work and I think that I may even be somewhat allergic to this drug as severe skin rashes and heat flashes occur when I am given this medication.

 

As such, even if I die from heart failure from the damage vommiting has done, I will finally be at peace. I can only imagine how many unexplained and sudden suicides have been the result of migraine sufferers. If anyone can help, I would greatly appreciate it.    Thanks.   Chuck

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Answers (9)
1/ 3/09 10:42pm

Hi Chuck,

 

I'm sorry you are having such a rough time. A Migraine attack itself can be scary, add those symptoms, and that brings it to a whole new level.

 

Hemiplegic Migraine (HM) is a rare form of Migraine disease made a bit more complicated because there are two variations: Familial Hemiplegic Migraine(FHM) and Sporadic Hemiplegic Migraine(SHM.) HM is difficult to diagnose its symtpoms are similar to various vascular conditions and often thought to be stroke or epilepsy. It typically begins in childhood and may end with adulthood. But no, there is no average age when HM stop, I'm sorry to say. For more information on HM read this article: Hemiplegic Migraine - The Basics

 

What is really important is that people who have HM be treated by an expert, a Migraine specialist. Since it is a rare condition, a Migraine specialist who devotes his entire practice treating people with Migraines and headaches, this expert would know best how to treat, diagnose and manage someone with HM. Current treatment options some doctors use for HM include calcium channel blockers and antiseizure medications. We have a list of patient recommended Migraine specialists you can see by clicking HERE.

 

Good luck

Nancy

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1/ 1/09 8:10pm

Well speckrig, I can't tell you how horrible I feel for you right now. I thought I had suffered over the years but you really have had it rough. You don't say how old you are now but I am 59 as of this past week and I do not get the demiplegic headaches that bad anymore. My migraines started in college. The only things I think that have helped me is quiting work and getting out from under the tremendous stress I was always going through. I worked for 29 yrs. The last 10 owning my own businesss. I suffered dibilitating migraines about 2 times a week or more. I also know what foods or additives to stay away from. Most of the ones you named. But one thing you didn't mention was MSG. If I eat anything with MSG I get sick within 30 minutes with aura, nausea and severe migraine. Diet drinks also cause migraines. I don't know if you get depression with the headache but I always have. Years ago when I worked and had the frequent migraines I would get so depressed and anxious I really wanted a way out. I take antidepressant meds, anti-anxiety and something to help me sleep. A lot of people totally disagree with this but I don't care. It has helped a lot. I also take something for high blood pressure. But, the one migraine med I finally found that has been a life saver is Maxalt. I have to have Maxalt. Either the one that melts on your tongue or the pill. If I take that as soon as I feel anything it almost always stops it. I'm not saying it will work for you but please ask about it. Hormones have always played a big part too. I think as I get older that has not been a big issue. It seems to be stress, bright light and food or food additives I have to watch. Also smells such as chlorox, strong candles or perfumes. YUK!  When you talked about pressing on your temple it just made me sick. I used to tie a long sock around my head as tight as possible because my arms would be too weak to press on my head. I had one bad spell of slurring my speech and feeling like I was in another world and couldn't communicate. That was about 5 yrs. ago. I was so scared. Like I said I don't know how old you are but I do think your hemiplegic migraines will slow way down. Imitrex used to make my heart pound and felt irregular. Forget that. You should go to a heart doctor just to make sure your heart is ok. That may make you feel better mentally. Try staying away from all the things I've mentioned and if you can get away from anything that is causing you stress please do. Besides chiropractor try getting massages. I pray you get better soon and the headaches stop. It can happen. Please write again with an update. Blessings and good health for you in 2009:)

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9/16/09 1:27pm

Dear Chuck ,l can,t believe we have the same migraine,l've suffered since l was 11,most people when they talk about migraines,mean bad headaches,but the numbness that starts in the hand,twisting your fingers then moving to your mouth,even your legs and feet,unable to move them ,not be able to see,and speak properly,then nausea and the vomiting starts,too sick to go to the toilet,plastic basin ,who,s husband cleans out,must keep drinking (my husband makes me drink after l vomit)also my bowel starts so l need help to go to the toilet,often l feel to faint.Then your not sure lf your sleeping or awake,you fell as if your going to die and the extreme pain in your head.

On Sunday l suffered another attack,but unlike the other times (FIRST TIME MY HUSBAND INJECTED ME WITH A COCKTAIL-on advice from the Doc-3 different things)It helped my vomiting,the pain was still severe,but l only had numbness on my head,cheek ,chin,and it now wed and l still have a numb head and cheek.After this migraine l wasn,t the ususal extremely tired ,l was still very sore ,but l had energy, today l,m feeling unwell,and strange .l also have an intolerance to medicine so maybe it the cocktail.For all the years l,ve had migraines(THE CURSE)its interfered with my life.l also have 3 children and with everyone l had 17-18 migraines with each .just wish they would get milder and once a yr,l'm having an attack every mth.Antonina.

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9/16/09 1:28pm

Dear Chuck ,l can,t believe we have the same migraine,l've suffered since l was 11,most people when they talk about migraines,mean bad headaches,but the numbness that starts in the hand,twisting your fingers then moving to your mouth,even your legs and feet,unable to move them ,not be able to see,and speak properly,then nausea and the vomiting starts,too sick to go to the toilet,plastic basin ,who,s husband cleans out,must keep drinking (my husband makes me drink after l vomit)also my bowel starts so l need help to go to the toilet,often l feel to faint.Then your not sure lf your sleeping or awake,you fell as if your going to die and the extreme pain in your head.

On Sunday l suffered another attack,but unlike the other times (FIRST TIME MY HUSBAND INJECTED ME WITH A COCKTAIL-on advice from the Doc-3 different things)It helped my vomiting,the pain was still severe,but l only had numbness on my head,cheek ,chin,and it now wed and l still have a numb head and cheek.After this migraine l wasn,t the ususal extremely tired ,l was still very sore ,but l had energy, today l,m feeling unwell,and strange .l also have an intolerance to medicine so maybe it the cocktail.For all the years l,ve had migraines(THE CURSE)its interfered with my life.l also have 3 children and with everyone l had 17-18 migraines with each .just wish they would get milder and once a yr,l'm having an attack every mth.Antonina.

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6/13/11 2:57pm

Chuck,

 

I can empathise as I have some very similar symptoms  -it's extremely frustrating  (consider yourself lucky that you're not a female as it gets worse during certain times of the month).

 

Over 4 & 1/2 years, I had along journey of going through evaluation, tests & diagnoses.  It was really important because treatment will be different depending on triggers & potential causes of your Migraine Disorder.  

 

Finally, it was discovered that I have had a perinatal insult which caused a mild form of PVL (periventricular leukomalacia) as well as injury to my right parietal & temperal lobe.  Between my in utero brain injury & genetics, I ended up with a complex mix of neurological disorders & developmental disorder. 

 

Have you had a MRI, F-MRI & CAT Scan? Have you had EEGS (sleep-deprived, sleep EEG, & Sleep Test for sleep disorders?   

Often, neurologists don't order these test because many people with Migraines have normal results.  However, with your complexity & mine, there might be something going on.

 

Just to warn you, the results can be confusing & may be read differently by different doctors & you may receive differen (and conflicting results)  -- which may either be due to having a brain that gets Hemiplegic Migraines or the cause for Hemi Migraines may end up w/results that are vague.  In my case, I had an abnormal EEG  (seizue doctor said no seizures or  Epilepsy but possibly Narcolepsy, sleep doc said no Narcolepsy but possible nocturnal seizures & other neuro stuff, one G.P. said partial seizures & Orhtopaedist said nocturnal frontal seizures)...

 

End result:  Obstructive Sleep Apnea (w/some Complex Apnea (occasional Central Apnea episodes) characteristics), REM Behavior Disorder, Hemiplegic Migraines & Migraines w/Aura, Partial Seizures (complex & simple  -due to my brain injury, I'm suspecting they are Parietal Seizures, which can mimic Temperal Lobe Epilepsy, Frontal Seizures, & Occipatal Seizures... but primarily sensory seizures-- & with my sensory issues & other body issues, it makes sense).

 

Also:  I needed to get my other medical issues under control:

Asthma (esp. when I get nocturnal asthma attacks),

Ehlers Danlos Syndrome  (genetic connective tissue disorder)

Depression (due to medical conditions)

GERD (which makes apnea & asthma worse)

Sensory Processing Disorder (hyperreactivity to stimuli & environment, from smells, sound, sound frequencies, vibrations, lights, activity, multiple bombardment, additives, food allergies, weather changes)

 

What I found helpful:  (combination)

Effexor (low dose anti-depressant/anti-anxiety)

Lamictal (anti-seizure)

Depakote (anti-seizure)

Prevacid (acid inhibitor)

Nuvigel (stimulant that is not an aphetamine - many stims lower seizure thresholds)

Asthma meds

CPAP (which is a constant struggle)

 

What I would like:

Ongoing Physical Therapy/ Occupational Therapy

Aquatic Therapy (saltwater pool -cannot tolerate chlorine)

Message Therapy

Accupuncture

Reiki

 





I had a severe reaction to Immitrex as well.

Every one is different, but since you have Hemiplegic Migraines, please take any suggestions with a grain of salt & tread carefully.

Maxalt landed me in the hospital with a stroke-like episode, which ended up with long-lasting problems.  I had one-sided weakness which didn't get better until about 5 months later (several yrs later, while better, still struggle w/ stuff that resulted from this episode).

 

My doctors cautioned me against going to a chiropractor due to my conditions.

SOme people swear by it & others say they got worse by it & had severe neck pain afterwards... be careful.

 

Do you go to a migraine specialist?

Sleep Specialist?

Neurologist?

Neuropsychology exam?

 

I hope you are feeling better since you last posted.

 

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9/16/09 1:55pm

lts Antonina again l thought l,d tell you the cocktail the Doctor gave me,and l wasn,t sick at all for once,Voltaren 75mg,Primperan 10mg,dexamethasone-G.a.p 8mg,although the pain and numbness on my head and face,were extreme.l also put a really hot water bottle on the back of my head,always do,l think it makes me feel better (THINK)l,m going to go to the chiro,l went 8 years ago when l was pregnant with my 2nd child,when l was unable to lift up my arms for 2 mths after a bad,bad migraine,so l,m going to give it another try,good luck with the cocktail after you ask your Doc,and keep trying to get over this awlful curse,don,t give up,l get like you lots of times but l have to stay strong for my kids.Do you feel dreamy some days even though you don,t have a migraine?please tell me any thing else if you fell unwell at times,and if the light bothers you?Thankyou Antonina-to Chuck

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9/30/09 8:18pm

Yes! Cluster Migraines! I cannot believe it, I had the same experience about 4 years ago that lasted for about 6 months, 2 months were non-stop migraines, unable to eat, probably about 6-7 ER visits for whatever shot they gave me that made me sleep for 2 days. MRIs, CATscans, more tests, more drugs... the whole bit...

 

None of that was working for me and nobody had answers.. so I finally went to my chiro for adjustments (neck, back, and hips). I went a couple times a week at first then about once every other week .. about 3 months later.. no more migraines.

 

I never got an answer from the medical doctors, My chiro said that I was just REALLY out of wack. I still go to the chiro for regular visits and have not had a migraine like that since.

 

That was the worst experience I've ever had in my life, I cannot believe it has been years of yours! Keep going to the chiro but go regularly rather than just before you start feeling crappy. Also, the drug Axert worked for me. Good Luck!

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11/ 1/09 11:33pm

Hey Chuck...I cried when I read this. I have horrific migraines also. But your symptoms sounds just like mine. I was diagnoised with migraines, seizures and it's been crazy. I'm disabled, have already suffered a heart attack from the all this and I'm lost. My family threw me away and want nothing to do with me. They think it's all in my head or i'm taking too much meds. Well, blame it on the docs. I have glaucoma, hypertension, avascular necrosis (can barely walk),  I'm totally gone thanks to the migraines. I take 1500 mg of depakote a day along with 1400 mg of neurotin, along with other meds. Demerol is the best thing that helps!  I have fibromyalgia and cramping...sounds the same what you had the droops, drools, nausea, vomiting, thirst, everything. I'm glad you're better, really. You found the cure somewhat. I can't go to a chiro, my necrosis and/or bones are fragile. I can easily fracture.


Take care and God bless.

Gabby

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1/ 5/10 1:47pm

Hi there,

 After 15 years and many mis-diagnosis of other disorders, I was diagnoses with Hemipleagic Migraine at age 41. I had the fortune of having a very good Neuroligist, Dr. Slater, make the diagnosis after an MRI show the problem area in my brain.

 Of course I was given Imitrex to control Migraines when I was younger, and have later learned that our type of Migraine, Hemipleagic Migraine, only gets worse with Imitrex.

 After much discussion and symptom watching, I have found for my migraine only Beta Blockers, Tyelrnol #3 and Aspirin can control my Hemipleagic Migraine. I had to titrate all the way up the tier of Inderal. Today, I take 120 mg Inderal two times a day. Aspirin is also part of my regimen, to offset the high probability of stroke if it manifests to that. I take T3 only for breakthrough Migraine.

 Enough of the pharmacology! Lets talk about life. My life is very stressful, and the older I get, the less stress I want, so I am reducing this by altering my perceptions of "problems". I am reading spiritual books, starting yoga, and staing away from that second cup of coffee and afternoon caffeine pick me up.

 So far, so good!

Good luck to you!

MLissa

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9/25/10 3:36am

HI THERE,

 I wanted to submit some updated information to everyone. I found out in August I have what is called a P.F.O., a hole in my heart that has been there since birth, causing an inappropriate mixture of oxygen to go to my brain. Many people have this, and many do not know it, but they have misdiagnosd migraines. The insuranse companies are guarding this as a tightly veiled secret, they don't want all the migraine sufferers going out and getting cardiology consults due to the expense. Oh, and the echocardiogram is a bit pricey to diagnose the hole. The symptoms are horrible. Two TIA and the stroke on the horizon if you do not get it closed. Every person who suffers Migraine should be getting a heart check done as soon as the first Migraine hits.

Milissa Buckles RN

PS- I am headed for surgery next week to get this hole closed, you betcha

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9/27/10 2:59pm

Hi there,

 

Thanks for the update. PFO, patent foramen ovale, has been a top topic for some time now. The thing is that everyone in fact is born with PFO (per Dr. Dodick in Are Migraines Linked to a Heart Defect?) but the hole closes shortly after being born in most people.

 

See the thing is Migraine is a genetic neurological disease thought to be caused by overactive neurons in our brains and genetics. PFO may trigger a Migraine for some people, so if we get rid of one trigger we can possible reduce the number of Migraines. Continue reading; PFO and Migraine - July, 2010 Update.

Good luck

Nancy 

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2/ 2/11 12:30am

I have always been told I would grow out of my migraines. I was diagnosed at age 5 and spent time in a children's hospital.  When I was a child, I freaked out at the first sign of a migraine.  It meant 14+ hours of hell.  I didn't think I would ever get better and wouldn't be able to live a normal life. When nothing shoed up on the CT scans my parents thouhgt I was faking. Brothers teased me.   Probably suffered from depression in high school. Also have anxiety fearing permenant damage like stroke or long time memory problems. The best part about getting a migraine as a kid meant it would be 28+ days before the next attack.  My symptoms have changed as I've gotten older.  I've learned not to panic and just try to get somewhere safe and sleep it off.  I actually perfer meds that mask it and help me sleep.  None of the new rescue meds help.  Chiropractic adjustments help if I get to them some enough or may abort one if I feel out of wack.  The fear and anxiety problem escalated my headaches.  Average headache is 2-4hours now.  While episodes are less profound, they are more frequent and usually come out of the blue. I had 3 last week which is unusually.  (weekly is frequent, average monthly). Hard to manage triggers when they are so random most times. I've been seizure medications, bipolar meds, depression/anxiety meds, muscle relaxers, pain meds, and rescue meds like Imitrex. Excedrin Migraines works about the same.    This is my first time on a forum so it's so good to hear stories from other suffers.  Can be lonely out here.  Back to your original question...I asked my primary psychian this question and he said he did have any patients over 50 with migraines.  My former Neurologist said his stoped between 40 - 50. I'll be 36 in 2 weeks.  The hemiplegia, concentration, and auras are worse than the actual headache now.  I hope this is a sign things are starting to improve.

 

I started seeing a new neurologist today.  I've given up on a miracle cure.  I know mime come from stress, anxiety and not taking care of myself (no genetic history in my family  either).  I'm going to better managing these things until I grow out of it. good luck! -Kevin

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6/29/12 3:25am

I used to have these migraines when I was younger; they started when I was 16. It was terrible I woke up to the right side of my body going numb, then tingly, and finally a mixture of tingly cold and paralyzed. I remember trying to walk up the stairs took me forever to try and wake someone to help me! Anyhow I had them for a month straight. One time I was even in Taco Bell and I tried to order nacho cheese. I could not remember for the life of me, everyone was looking at me oddly while I tried to remember and just said, "the yellow stuff." After that terrible month was over though... I haven't had one since. Do they come back if they have gone away? I can imagine how frustrating this is for each of you, and for that I am so sorry. It was the worst feeling in the world when I had it, and I would not like it to come back. 

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By speckrig— Last Modified: 06/29/12, First Published: 01/01/09