Never Read the Comments!


At the ripe age of 8, I was diagnosed with “hormone headaches.”  This diagnosis was incorrect and in my early 20’s, I was diagnosed with three types of migraines: migraines with auras, cluster migraines, and migraines with pain.  Once I hit my thirties, we added chronic migraines.

Having 4 types of migraines is… well, painful.  I have migraines 25 out of 30 days of each month.  And I have to determine, using the symptoms, exactly what type of migraine it is to correctly treat it.  I have checklists for them to help.

To complicate matters, I suffer from Migraine Tolerance.  My body has gotten used to life with migraines, so I no longer have some symptoms that would help narrow down the exact type.  It also means that when I say my migraine is a 5, most people would categorize it as a 10.  This makes treatment even more difficult.

In the last 12 months, I have visited my doctor or the ER 17 times to treat migraines that did not respond to medications (these are normally cluster migraines).  Preventive meds have never proven useful for me and in an twist of universal irony, some of the meds to prevent certain types of migraines can create other types of migraines.  As I get older, they get worse, but I think about them less.

However, tonight, I got linked to a website talking about migraines and types.  I made the mistake of reading the comments.  By the time I finished, I had a headache, because I have no doubt that my blood pressure had gotten a little high.

The comments section appeared to be a pissing contest between users on who had it worse.  This is a lot like breaking out rulers to compare penis sizes.  I understand my pain and my pain only.  I can sympathize with others, but I can’t experience their exact pain, so I can’t tell you if my cluster migraine is better or worse than your retinal migraine.

Here’s the basis behind that:

  1.  My migraines with auras are treatable, sometimes really easily, as long as I catch it during the aura.  My aura includes a burning sensation in my head, a personality change (I hate everyone and everything and would prefer to kill people than talk to them), and vertigo.  These migraines are bad, but they aren’t debilitating anymore. Once upon a time, I would find myself puking my guts up and passing out on bathroom floors.  I was photophobic and audiophobic.  However, as I’ve developed tolerance, I rarely throw up and while I am still photophobic, I’m not audiophobic.
  2. Migraines without pain are also treatable, but harder to diagnosis.  I know something’s wrong, but I don’t always realize I’m experiencing the aura (no burning sensation with these) of a migraine and therefore, don’t always realize that I have a painless migraine.  Vertigo is also not a guarantee.  I still suffer from personality changes and with these, I get diarrhea, which I don’t get with any other migraine.
  3. Cluster Migraines are hard to treat in me.  My first migraine was a cluster migraine.  It hit every day for three months at the same time.  As I said before, I was 8.  I didn’t understand why my head was trying to explode.  I just knew that it was.  I have no aura, often finding it is there when I wake up (that pesky tolerance again), and I have nightmares when a cluster migraine hits.  Afterwards, regardless of how I’ve gotten rid of it (via meds or on its own), I’m exhausted.  Not tired, but literally exhausted.  Getting up to pee takes an act of congress signed by God and passed down the chain of command to my body.  Also, I can’t sleep with one.  Insomnia is the most evil part of a cluster migraine.  Sleep helps migraines, not being able to sleep when you have one is sort of like removing your fingernails with pliers because you jammed your knuckle.  And while most of them hit when I’m sleeping, that isn’t a hard and fast rule.  I may get one every afternoon for five hours (after which it disappears), but I will get the pain back at the same time the next day and then the next and then the next and it can last for weeks.
  4. Chronic Migraines are awful, but I prefer them to clusters (most people prefer clusters).  Chronic migraines are why I have migraines 25 days out of 30.  Before the chronic migraines kicked in, I had migraines 15 days or so a month of different types.  I’m not sure why I got diagnosed with chronic migraines, except the frequency and duration of my migraines increased.  My chronic migraines are similar to cluster migraines, but last a little longer.

On top of the “migraines,” I get tension headaches and hormone headaches, because I need a few more days of head pain.  However, it’s a different type of pain.  When I have a migraine, my head feels like it is trying to implode.  My own pulse is my worst enemy and I try to meditate to slow my heart rate and therefore, slow the pounding in my skull.

Everyone who has migraines of any type have one thing in common, when they have one, they will take anything to get rid of it… Literally.  Recently, I learned LSD has shown some promise at assisting with cluster migraines.  My first thought, how do I get into that study?  Someone could hand me heroine and tell me it would help and I’d heat up the spoon and inject it.  Some of the meds I take have warnings that side effects include death, heart attacks, strokes, and brain damage.  I still take them.

Ok, so back to the comments.  There were a lot of comments about migraines being an overblown condition and that it was just a headache, the sufferer should pop some Advil and get back into the world.  It isn’t and Advil doesn’t help.  During my worst cluster ever, while I was hospitalized getting Demerol and DHE without my migraine going away, I honestly considered suicide, because death would end the pain (by the way, DHE is one of the drugs where death is a side effect).  It didn’t come to that.  My doctor, realizing that the DHE and Demerol were taking too long, upped the DHE dosage and switched me from Demerol to something else that gave me a little more relief.  I’ve talked to others with migraines and they have all said that “yeah, they have considered death as a viable alternative to a migraine.”  I’ve never heard of anyone with a headache thinking that death was a perfectly acceptable alternative form of treatment for their migraine pain.

The other ones that pissed me off were “Mine are worse than yours, so suck it.”  My neurologist once told me I was the most migraine tolerant patient he’d ever seen.  He also told me I had some of the worst migraines he treated.  So does that mean that my migraine is worse than yours?  Not really.  Mine’s a migraine.  Your’s is a migraine.  They both suck a whole lot.  If you have hemiplegic migraines, I would say yours are worse than mine, even if mine lasts for three very long months.  At least I don’t have paralysis with mine.  However, I’ve now had two people with hemiplegic migraines tell me that they feel sorry for me, because my migraines are worse than there’s, in their opinion.  I’ve had dozens of people give me sympathy because I’ve developed migraine tolerance, because when they get a migraine, everyone knows it, but when I get one that makes me think about ways to stop my heart beat, no one realizes I’m having a migraine.

And that’s why you should never read the comments on something like that.  It just makes you sick, mentally and physically.  Also, you can’t compare pains, because until you have experienced that exact pain, it’s hard to understand it.  My migraines are not like your migraines or Joe’s for BFE, so I cannot judge my migraine to be better or worse.  Just as you can’t judge that your migraine is better or worse than mine or Joe’s.  Migraines have symptoms, but they are generic symptoms.  I don’t get tunnel vision with my aura, I see explosions of colors.  I don’t know if that’s better or worse than tunnel vision.  However, “explosions of colors” (not spots in my vision, but actual explosions of colors), are not a “listed” symptom.  Meaning, it’s rare enough for it not to get mentioned in the “symptoms checklist” on WebMD.

And a migraine is not a headache.  They are MILES apart.  I’ve had headaches.  I’ve never wanted my heart to stop beating so that my head would stop pounding with a headache.  I do that with almost every migraine I experience.

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1 Comment

  1. Shannon Watz

     /  August 3, 2015

    First, I am sorry you suffer from migraines! And I totally agree with you! I can’t understand YOUR pain, but I understand PAIN. I too at times think death could be a quite plausible option. I have a nerve condition that effects both of my arms. People just do not understand! I too have read comments on a board for my condition. Everything from its all in your head to you’re faking. And also the I am worse off than you. That I do not understand at all. I have seen a specialist that told me I had the worse case he had ever seen and refused to treat me for fear of making me worse. Does that mean I am worse off than everybody else? I don’t think so! And why would I brag about how broken I am? To me that is crazy!! Kind of like who can pee the farthest.
    We are all different. Conditions are different. Symptoms are different. Pain tolerances are really different. How we deal with pain is different. And reactions to and relief from medications are all different. If people could understand that those of us that suffer from any pain condition wouldn’t be put down by others and maybe those I am worse people would learn some compassion for others.
    I loved this post! I agree never read the comments. You’ll only get ticked off!

    Liked by 1 person


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