Saturday, June 23, 2012

Migraine Awareness Month Blogging Challenge #23: "I drank the Kool-Aid"

AwarenessMonth2012BC2Today's prompt is:
Migraine Awareness Month Blogging Challenge #23: "I Drank the Kool-Aid" We all try things out of desperation, even when our common sense is telling us they're not going to do anything. Share your experience with this.
I guess I've been lucky.  I haven't ever really tried anything bogus.... yet.  I have been tempted, but I make it a point to always inform myself of things before trying them.

I did once try something I shouldn't have because I didn't do the smart thing and look up every tiny side effect.  What was it?  Topamax.

This was several years ago, when Topamax was still fairly new.  Kidney stones were considered a rare side effect.

My neurologist prescribed it for me.  I asked about side effects, but kidney problems were never mentioned.  I looked at the paper that came with my first dose, but it was listed as rare and when I talked to my doctor about it, he didn't feel that there was any risk for me since I hadn't had a stone get stuck in some time.  He really felt this would solve my problems.

A few months later, I was at a meeting, standing and talking to a friend, when I felt the familiar stabbing sensation in my side.  I actually was able to hide it.  Not a person there suspected a thing.  I went to the bathroom.  It didn't change, so I drove home - about 1 hr.

When I got home I was sweating and doubled over.  I knew it was a stone, but also knew from experience what they would do for me in the hospital.  First they try to flush it with fluids.  That I could do at home.

I felt the stone on Tuesday, and tried until Friday to pass it on my own.  By then I was exhausted and dehydrated because I had vomited much of what I was drinking back up.

I was given a choice, I could have surgery the next day and have it removed, or wait until the following week to have lithotripsy.  The pain of a kidney stone is 10, and by that time I also had an untreated Migraine to deal with as well.  They moved me to a private room because my roommate (and all her visitors) was disturbed to hear me moaning and puking all day long.

The problem was a staghorn kidney stone.  And yes, it is as bad as it sounds.  Parts had been breaking off and I had been passing them, until one broke off that was too large.

I had surgery, but there was some damage they didn't suspect, so I needed a stent and was catheterized with a foley catheter for quite a while as my kidney and ureters healed.  All this happened as my parents were making a trip from Oregon out to visit us.  It also happened when I had a golden retriever that was ready to whelp (have puppies).  We had a working farm at the time, and our daughter who was barely a teenager ended up running everything while I was hospitalized. 

Daughter held down the fort, but her grades slipped badly.  She was an emotional wreck and teachers did not understand.  I barely saw my folks.  They were upset that I wasn't still in the hospital.  And the dog?  She had 16 pups while daughter was at school.  She came home to find puppies everywhere.  Unfortunately, some of them didn't make it despite her best efforts.

The fun didn't stop there.  My catheter kept clogging, in the hospital and once I got out, meaning several emergency visits to have it replaced.  This was agony - the worst pain I've ever felt bar none, and I'm a tough girl who's been through a lot.  One night it was so bad, Hubs called the urologist at home at about 11pm.  Poor brave Hubs got step by step instructions over the phone how to remove the cath, which he did bedside in our bedroom.   Then I had to make the long trip back to the ER for another one.  I felt every tiny stone on the road.  

(Can I just say, right here, that being able to pee all by yourself is highly underrated!)

I should have followed my gut instinct when I saw the *rare* mention of stones.  I am a stone former.  A gravel pit of the things.  I've had kidney trouble due to my autoimmune diseases too.  I trusted my doctor.  But doctors are human too.  They make mistakes.  I guess I had forgotten that part.

After surgery when I was still hospitalized, Hubs was getting me a drink in the hallway when he saw my neurologist getting on the elevator.  He told him what happened.  The neuro came in and asked how I was doing.  He said he was sorry I had this happen to me. 

I never saw that neuro again.  Suddenly phone calls weren't going through and I couldn't get an appointment.  Coincidence?  I really don't know.  I gave up and tried to find another doctor.

Unfortunately, my kidney has never been right after that.  I recuperated over about 4 months.  It was probably 6 before I was functioning very well again.  There is still constant pain.  I still form stones, but am much more careful now when someone tries to give me meds that might cause a problem.

Topiramate can be a godsend to some Migraineurs.  I don't want folks to read this and think this will be their experience should they decide to try it.   Although we now know that stones are NOT rare, good management (the kind I didn't know I needed) can help prevent the kind of experience I had.    

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by
To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

No comments: