Diagnosis: My Brain Hates Me

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Not My Real Brain (Or Is It?)

I would like to start by thanking everyone who sent well-wishes.  I am truly humbled by your kind messages of concern and hopes for healing.  

Dear Friends,

So, let us get down to business.  What looks like a stroke, but is not a stroke?  If you guessed migraine, you have just won all the cookies in my cookie jar.  (Full disclosure, I don’t have a cookie jar, but it is the thought that counts.)  Now, to be fair, the type of migraine I suffered was not your typical type of migraine.  “I will take ‘Rare Conditions’ for $1,000, Alex.”  Hemiplegic migraines are one of the rarest types of migraines and they are absolutely debilitating.

According to the Migraine Trust

“A person with hemiplegic migraine will experience a temporary weakness on one side of their body as part of their migraine attack. This can involve the face, arm or leg and be accompanied by numbness, or pins and needles. The person may experience speech difficulties, vision problems or confusion.”

As you can tell from the symptoms, this is an exact description of my symptoms.  It is also a nearly exact description of a stroke, so it is unsurprising that I received treatment for a stroke upon first arriving in the hospital.

Pro-Tips:

If someone has stroke-like symptoms, even if they have a strong history of migraines, call 911/emergency services immediately.  Whether it is a stroke or a hemiplegic migraine, the best place to be is at a hospital!   

If you suffer from certain types of migraines, this may increase your overall risk of stroke, even if you are young.  Talk to your doctor about your individual risk at your next appointment.

Migraines have a genetic component and hemiplegic migraines are no exception.    This rare variety of migraine falls into two categories, familial (genetic component) or sporadic.  While I have a personal and familial history of migraines, there is not a history of hemiplegic migraines.  Therefore, I have the sporadic variety.  Lucky me!

In most cases, the symptoms of this particular type of migraine are short-lived, lasting only an hour or two.  However, in less than 10% of the population of hemiplegic migraine sufferers, the attack can last beyond a day.  Since I am special (in the entirely wrong way), I fall squarely in the smallest percentage of sufferers.  Mercifully, my brain does not hate me entirely.  My memories of the event (beyond my initial description) strongly resemble what comes out when you put a pie in a blender.  All the pieces are there, but you cannot really tell what is crust and what is the strawberry rhubarb filling.  This is a typical response following a hemiplegic migraine and most sufferers will recover fully after their incident.  In rare cases, a severe migraine may lead to permanent neurological changes.

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The Sacrificial Pie

There are several ways to treat migraines once they occur, but especially in the case of severe, frequent, and/or lengthy migraines, it is best to prevent them.  Three of the most common prophylactic medications for migraines are verapamil (calcium channel blocker), acetazolamide (diuretic), lamotrigine (anticonvulsant).  There is some variability in patient response to these, whereas some get insufficient relief.  However, in the best case, the proper medication will significantly reduce the frequency and severity of the migraines.  I am currently taking oral verapamil, and while I have not been using it for long enough to have the full effect (usually around the 3-month mark), I am noticing some improvement in my overall migraines.  Last week I had a migraine that lasted 2 ½ days and it was just a common migraine.  This is a significant improvement over previous migraine experiences (No, you don’t even want to know how bad they were before.)

So, you may wonder, what is next for your intrepid blogger.  Unfortunately, the answer is more testing.  I am having some ongoing symptoms that are unrelated to my migraine experience.  While they appeared at the same time I had my migraine, the operating theory is that it is an entirely different issue.  It is possible that the severity of my migraine triggered an underlying, and still unidentified, condition.  In the last few weeks, I have ‘donated’ nine vials of blood, had a cervical spine MRI (on top of the two MRIs during my admission) and an echocardiogram.  This Thursday, which is coincidentally my husband’s birthday, I will go to the neurologist for an EMG (you can learn more about that here).  Let’s just say that it involves needles and electricity.  I am not looking forward to it.  At all.

The follow-up to discuss my testing results is on June 13.  If you have a free moment on that day, please send some prayers, virtual hugs, or warm-fuzzies my way.

If you have migraines or love someone who does, take a look at some of the in-text links.  Also, here is a great video on key findings from the Migraine World Summit https://www.migraineworldsummit.com/highlights/.  A good friend and fellow migraine sufferer, Kim, sent me the link.  It is approximately 33 minutes, but it is definitely worth a watch!

Until next week, I remain your hopeful and so done with this craziness,

Rie

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3 thoughts on “Diagnosis: My Brain Hates Me

  1. I’m so glad that you’re finally getting to the bottom of all this, but it sounds as though there is still more to know. I’ll be waiting for your next post.

    Liked by 1 person

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