Migraines, a Personal Tour of Hell

 

 For those of you who think that migraines are just a bad headache, read this article.  For those of you who suffer from as I do, know that you are not alone!  

Migraines are not just a bad headache, they are a whole body and brain event that can be quite debilitating, scary, and anxiety inducing events!  

Often times, people who suffer from migraines are ignored or considered to be just suffering from a headache.  I can assure that they are NOT just a headache.

My Experience:

From the time I was in my early 20's I used to have something that occurred in my visual field.  It started out as a small shimmer dot in my vision and would expand to cover a third of my visual field to the point that I couldnt see to drive or read.  I would get dizzy and usually end up with one hell of a headache which can only be described as taking your brain and rubbing it over a cheese grater.  I went to the eye doctor and he said that it was just floaters that everyone gets.  My friend Helen, in Baltimore had one once while we were working togeather.  I knew that something was wrong because she seemed panicked.  When I asked her what was wrong she said she had a "tin foil ball" in her vision and that I would think that she was crazy.  She didnt know what it was either.

In my mid 20's I totally lost my vision in my left eye during a movie.  My visual field filled with swirling colors and stayed that way for about 20 minutes scaring the hell out of me.  

It wasn't until about five years ago, when I suffered from a sixth month long vertigo attack that I was diagnosed with severe migraines.   

If you want to see what a migraine aura is like watch the video below:

 

 

Migraines can have a whole host of symptoms in addition to just the severe head pain.  Some of the more fun ones are depression, vertigo, a whole host of visual disturbances like seeing things out of proportion (ie smaller than they are or bigger than they are), anxiety, intestinal issues, memory loss, slurred speech, difficulty concentrating, experiencing deja vu, white matter lesions on the brain, extreme head pain, auditory hallucinations,  vomiting and nausea, light sensitivity, and the list goes on. 

The pain is often times severe.  Imagine driving an icepick through your eye and not being able to do anything to stop the pain.  I had a series of cluster migraines two years ago that ended up putting me in the emergency room.  The doctor informed me that these types of headaches dont respond to normal pain killers because they dont work using the normal pain route in the body.  As he put it, I could shoot you up with morphine and it wouldn't do a thing.  I had to just wait it out.   I had them every night for three weeks. 

What is the treatment?  As of now, there is no cure.  Most neurologists start you on a wild goose chase involving a lot of high powered drugs that can have nasty side effects.  You run the gamut until you hopefully find something that controls them. Many people suffer from them multiple times per week. 

 

So, the next time someone tells you they have a migraine or they have to miss work because of one.....think twice before you just dismiss it as something trivial! 

 

From an article found on the National Migraine Association's web site:

Negative emotional and cognitive reactions

Especially to the uninitiated sufferer, the migraine aura may represent a hellish experience arousing fears of going blind, having a brain tumour or stroke, becoming insane or even dying. Other negative emotional and cognitive reactions may be induced by the migraineur's awareness of disability (e.g. during work or whilst car driving) and social stigmatization resulting from the migraine aura. Some may wish to die at the height of the migraine attack. Gaining knowledge about the migraine aura may help the sufferer to develop a coping strategy, accepting the aura as a part of everyday life that loses many if not all aspects of its threatening character.

Experience of disability resulting from migraine auras

"Sometimes the auras can be more disabling than the headaches and they get less sympathy from doctors, and nothing seems to stop them."

(Fiona Bremner, Newsgroups: alt.support.headaches.migraine, Subject: auras, January 26, 1999)

"My migraines with aura are my most severe, and sometimes I get 2 sessions of aura with them. It toally sucks, and I hate the aura more than I hate the head pain."

(Martha, Newsgroups: alt.support.headaches.migraine, Subject: Anyone here get aura?, September 4, 2005)

Fear of becoming insane

"Wow! I never knew there were names for those sensations. I thought I was just nuts (heh heh - the jury's still out on that one). I've never said anything to the dr's because I thought it was my imagination.... Hmmmm.... I only get the micropsia [actually the experience referred to is a sensation of the body feeling larger rather than a visual experience of the environment being smaller, i.e. macrosomatognosia rather than micropsia] ... It's weird.... wow it's real! I'm not that crazy (note: 'that'). Wohoooo!!!"

(sillybear, Newsgroups: alt.support.headaches.migraine, Subject: cool aura page, February 3, 2000; additions in square brackets by Klaus Podoll)

"I don't always get the pain first, sometimes during, sometimes after - and varying in type (sometimes icepick through the head, sometimes more like my head is going to explode). When I get the patterns first they usually start as shadow type patterns with neon dots at intersecting lines. Sometimes that's as far as they go, sometimes the neon takes over the geos. It's hard to do sight things, but if you can relax and 'enjoy the show' as much as possible, it passes quicker for me than when I used to panic thinking I'd gotten hold of moldy rye, was communing with 'the other side', or just going insane. My thinking often becomes altered as well and I experience other things like loss of motor function in various parts of body, to loss of sight if it gets worse. I've had these patterns play before me ever since I can remember. I wasn't diagnosed with migraine until 30's and so didn't share this with anyone as I learned early not everyone saw them."

(kryen, Newsgroups: alt.support.headaches.migraine, Subject: Brief pain followed by geometric patterns, January 6, 2001)

Fear of being considered insane

"I can remember 2 different kinds [of migraine auras experienced as child], and often they happened together, the first was little 'sparkly dots' drifting to and fro in my field of vision, the others were black shapes that sometimes looked like a silhouette of something I could almost recognize, so I guess that I was having both scintillating and [positive ] scotomas ... I also remember that I never told anyone about them because 'people who see things that aren't there must be crazy' and I had enough grief as a kid just from being overweight without adding crazy on top of it."

(Bear, Newsgroups: alt.support.headache.migraine, Subject: Migraine auras experienced as child, January 15, 2006; additions in square brackets by Klaus Podoll)

"But yeah, 'crazy', stigma concern seems to go hand in hand with migraine just as much when you have them as a child. At least when you know what you've got you can rationalize that you are sane."

(Lynsey, Newsgroups: alt.support.headache.migraine, Subject: Migraine auras experienced as child, January 16, 2006)

"I just gave up caring if people thought I was crazy or not, and found it to be the most liberating thing ever, if people think you are a bit nutz you can get away with saying damn near anything."

(Bear, Newsgroups: alt.support.headache.migraine, Subject: Migraine auras experienced as child, January 16, 2006)

Fear of dying

"anyone out there get auras but me? Just started having the freaking things followed by headache and am over 50 years old... hope I am not dying."

(Mike Rabon, Newsgroups: alt.support.headaches.migraine, Subject: auras, January 26, 1999)

"If you're dying, then this must be the closest thing to heaven."

(Suzie Eisfelder, Newsgroups: alt.support.headaches.migraine, Subject: auras, January 27, 1999)

"Scary is an understatement for the aura part of things. The first time I had it, I thought for sure that I was having a stroke and I was going to die. And I can say that freaking out and being stressed certainly does NOT help HA's!!"

(Lisa Kuitert, Newsgroups: alt.support.headaches.migraine, Subject: auras, June 6, 2005)

Fear of going blind

"The first one I had scared me half to death, I thought I was going blind; it's... almost impossible to describe, a curving figure of shimmering lines of color moving slowly across the field of vision. You can't see what's 'behind' it, and even in the rest of the visual field things are... strange.... Pretty, yes... but if I never see another in my life, I'll be just as well pleased."

(John Vinson, Newsgroups: alt.callahans, Subject: Migraine Aura, February 16, 2000)

"I had a really scary about a week and a half ago. I was sitting on my couch, watching a movie with my friend and I noticed my vision changed. All of a sudden, the bottom half of my right eye was completely gray? or something. I could only see out of half of my eye and my other eye was doing the normal blinky-flashy aura thing. I was so freaked out and scared that I was going blind that I called my mom and cried hysterically until she convinced me that it was just another aura. Anyways, that was super scary and pretty weird. My vision came back after less than 10 minutes and then the migraine started a little later, but I have never been that terrified in my life."

(petitanana, Livejournal for Support Group for Migraine Sufferers, Subject: Weirdest migraine aura, November 23, 2005)

Fear of having a brain tumor

"Got that [i.e. blindness] once! Scared the hell out of me. It was like a 'wave' of greyish darkness in my eyes, and went away about 30 minutes later. The big hypocondiac that I am then search through the net for a whole day trying to rule out a cancer of some sort..... Pretty pathetic huh.... ~Sorta~"

(~Sorta Ann, Newsgroups: alt.support.depression, Subject: Blindness, May 9, 1998; additions in square brackets by Klaus Podoll)

"It is real scary when you first start getting auras. It started for me about 10 years ago. I had just come from the dentist and had this wiggly strange scintillating light in my vision. I did think maybe I had a brain tumor or something... I guess it's just something in the brain. I haven't died yet, though sometimes I wish I had because of the pain."

(Jackie Sprat, Newsgroups: alt.support.headaches.migraine, Subject: auras, January 27, 1999)

"I'm not a regular migraine sufferer but I've had the occasional attack and I know how debilatating they can be. I find the visual effects somewhat interesting. Once I saw a pulsating electric checkerboard in my peripheral vision w/o knowing what it was. For a little while I thought I was having a stroke or developing a brain tumor. Still it was an amazing effect, like being trapped in one of those Cinematic POV shots where the hero has been drugged."

(elag, Newsgroups: alt.surrealism, Subject: H0llyw00d Flatlands, May 14, 2003)

Fear of having a stroke

"Hi, I need some information from anyone familiar with 'migraine aura'. One night, I experienced the weirdest thing... I felt dizzy and was seeing zig-zags all over the place... I thought I was going to have a stroke or something. I drove to the hospital in the thick fog (I could barely see anything) and waited an hour to be told that I had a migraine aura. The doctor told me to expect a nasty migraine, which usually follows the aura; it never came. I've never had a migraine in my life but this incident sure scared the hell out of me."

(frousse, Newsgroups: alt.support.headaches.migraine, Subject: Migraine aura??, May 6, 1998)

"Your post reminded me of the first aura I had. It was a yellow blotchy one that was doing the slow zoom and it was in the middle of the junior high volleyball lineperson test. I had no idea what was going on, I thought it was some kind of stroke."

(Elaine M. Brown, Newsgroups: alt.callahans, Subject: Migraine Aura, February 17, 2000)

"Hello Gentlemen, I just wanted to say a big thank you for the website www.migraine-aura.org which I discovered only today. I am 38 years old and have experienced migraines from the age of 8. I never had a visual aura until August 2004, but knew what it was when it happened. Then in January 2005 I was speaking to my daughter and suddenly could not speak or think of words. I had numbness in fingers and in my jaw and lip which travelled. For months now I thought I was having mini-strokes or MS or something equally terrifying. Today I saw a neurologist who told me he thinks it's migraines, and tonight I discover the concept of sensory auras - something I never knew. The stories and examples you have included in the website, people's auras in their own words, has almost reduced me to tears. I feel incredibly relieved. It explains so much to me. I see myself in their words."

(Irene Schymitzek, Email to Markus Dahlem and Klaus Podoll, May 6, 2005)

Hypochondriac fears

"Two questions for you all -

First off, when I get a 'bad' migraine (once or twice a year), it usually starts with visual distortions, blind spots and lightning bolts. Sometime into this, I get a tingly/ numb/ electric feeling that moves up my arm or leg, sometimes in my mouth. And in the middle of it all, there's a few minutes where I have trouble talking. Just curious how many of you have this succession of symptoms.

Secondly, how many of you are hypochondriacs, or at least paranoid about it happening? After several tests, I've ascertained that it's all just migraines at work and nothing more sinister. However, the aura symptoms terrify me for no real reason other than that it feels like I'm a prisoner in a malfunctioning body. After the migraine passes (nowhere near as painful as some of you describe), I often have trouble with my vision for the next week or so - not because my vision is damaged or anything, but because I'm CONSTANTLY paying attention to everything in my field of sight. It's exhausting and tiring on my eyes, especially to constantly focus on my peripheral vision. Just curious if any of you look for the visual cue as the first symptom to the point of paranoia."