My Withdrawal

 

I debated telling you about this.  It’s not my usual sort of thing at all.

 

But then I remembered that time I got the disastrous Botox injections that melted my face and made my migraines worse; specifically, I thought about all the people who commented on that post, or contacted me about it, and all the people whose heartbreaking search terms lead them to it every week.  I thought about that and I thought, “I wish someone had told me five years ago what I know now!”

 

The decision sort of made itself after that.

 

 

I’ve been having some troubles with my eyes recently and—while I was fairly confident these were a perfectly normal escalation of my existing condition (or, less likely, aging—yikes!) I decided to get it checked out just in case.

 

Just in case, in this case, saved my vision and possibly my actual eyeballs.

 

Let’s travel back in time for a moment, shall we?

a finger presses the rewind button and the world rewinds: a clock runs backward, cream pours up into pitcher, coffee drips back into pot from cup; a woman wakes up

 

When I first began actually treating my migraines[1] we dialed in a lot of my issues and types of migraine and tailored my treatment plan accordingly.  One of the things we addressed was a weird thing that happened with my eyes, wherein I’d be going along, living my life, and suddenly my vision would go blurry.

blurred face at night

 

These episodes had originally been misdiagnosed as auras but I noticed they were occurring totally independent of actual migraines, which caused my neurologist to boot the problem directly out of his office.  Or, as he put it, “If we don’t think it’s related to your migraines then it’s an eye thing.  I don’t do eyes, I do brain stuff.”

 

I miss him.

 

So I went to an eye doctor who did a really cool test that allowed him to look at the back of my eyeball

Human retina (it looks like an orange ball with weird veins and a blobby light bit

 

… and he determined that my eyeballs were perfect.  Ergo, I was suffering from “atypical optic migraines” and was punted back to neuro.

 

My neurologist—whom, again, I loved dearly because he gave me the good drugs and made the pain stop and was in all ways lovely—nodded along with this and prescribed my one and only preventative medication: Topamax.

 

Remember that name; it’s important.

two small, round, off-white pills; one side reads TOPAMAX, the other is imprinted with the number 50

Topamax is an interesting drug; it was prescribed as a migraine preventative,[2] but it did fuck-all to prevent my regular migraines.  It did seem to do something about the weird blurry episodes—which will make sense in a bit—but the side effects… I was warned the most common complaint reported by patients was a “tingling, pins-and-needles sensation” in their fingers—I was not informed[3] that the sensation was less oops, my hand’s asleep and more why oh why are there bugs crawling under my skin?  Make it stop MAKEITSTOP!!! or that the “sensation” would not be confined to my fingers but would encompass my hands, arms, feet, legs, head and face.

 

If you’ve never tried to hold your shit together during a social outing while bugs are crawling around under your skin, you don’t know my struggle in those first few months while we ramped up my dosage.[4]

 

Why the ramp-up period?  Well, that brings us to the other fun thing about Topamax: the side-effects basically disappear (as long as you’re properly hydrated and rested and not under unusual stress) once you’re used to your dosage.  But any change in how much you take—including missing a dose—triggers the full-force return of those side-effects; basically, even withdrawal from this medication has the same side-effects.

 

I also wasn’t warned about the small muscle cramps.  Ever get a cramp in the arch of your foot?

(meme) massaging a cramping foot; text reads, "That moment your foot cramps and you think, 'This is it. This is how it ends. I must amputate.'"

 

Now imagine getting them on the top of your foot.  The back of your hand.  In your ears.

 

But I got my dosage stabilized and figured out a good routine and my side-effects were under control.

 

Until this year, when I started noticing my eyes going blurry again.  My regular physician sent me straight-away to an ophthalmologist because my symptoms sounded—and these were his actual words—so incredibly weird.

 

 

EYEBALL ASSISTANT:  Okay, ready?  One, two… (drips eyedrop)
ME:  (jumps 18 inches to the left)
EA:  (forces smile)  Okay, we can try again.  Try to hold still this time.
ME:  (dripping wet from many attempts)  Can I have a tissue?
EA:  (passes me tissue)
ME:  Are you sure you wouldn’t rather let me do that?  (points at drops)
EA:  No… it’s better if I do it.
ME:  (sighs)
EA:  Now hold still.  One… (drips)
ME:  (blinks)
EA:  (grinds teeth)
ME:  One more.  We can do it.  I believe in us!
EA:  Okay.  Open wide.  (squeezes stream of solution at my face)
ME:  (sputtering)  Yup!  You got it that time!

 

Eleven Minutes Later

 

ME:  (twitching and flinching)  I’m sorry.
EYEBALL ASSISTANT:  It’s fine, let’s just… try again.  Really try to hold still.  (attempts to push giant machine into my eyeball)
ME:  (holds very very still)
MY FACE:  (nopes the fuck out)
EA:  (sighs)
ME:  I’m so sorry.
EA:  Okay, I’m going to… go get the doctor now.
ME:  (smiles apologetically)  That’s a very polite way of saying “I’m going to go let someone else deal with your weird-ass toddler behavior.
EA:  No, it’s fine… We get a lot of kids, actually.
HIM:  (laughs)
EA:  (embarrassed)  I mean, lots of kids are actually very good for their exams!
ME:  … So I’m worse than a toddler.
EA:  I… I’m gonna go get the doctor now.  (flees)
ME:  … I broke her.
HIM:  (still laughing)
EYEBALL DR: (entering quietly)  So we can’t get a glaucoma test because you’re not tolerating it very well.
ME:  Again, such nice ways of saying I’m basically a child about other people touching my eye.
ED:  (waves me off)  Talk to me about these symptoms; you’ve noticed some changes in your vision?
ME:  Yeah, it’s weird.  So I had what I was told were atypical optic migraines, which… I mean, if they are optic migraines they are the weirdest ones ever—but hey, if there’s a typical there must be an atypical, right?
ED:  (nods)
ME:  But… they do happen in both eyes, simultaneously.  And they last for a whole day.
ED:  Seeing spots, or rainbows, or…
ME:  No—holy fuck, what do I do to see those?
HIM:  Right?
ED:  So what is it like?
ME:  It’s just… blurry.  Like when you come up from underwater and you’ve still got water in your eyes?  But I can’t blink or shake it out, because there’s nothing there.
ED:  (nods)
ME:  But now…
ED:  It’s changed?
ME:  Well, this year I’ve noticed that when I’m on my phone, or reading, or at my computer for even a few minutes, I then can’t focus on anything at a greater distance for at least 20-30 minutes after.  And sometimes it just stays blurry.  So if I’m going to be driving, I should probably stay away from any reading or screens or anything up-close for a good hour before… which isn’t always practical.
ED:  Right.  Well, let’s take a look at your eyes.  I’m not going to do anything to touch them, and we’ll only do what you’ll tolerate—
ME:  (smiles)
ED:  … And I will try to keep the light down because I know you mentioned light sensitivity as a migraine trigger.  Let’s see what we can see without making you terribly uncomfortable.
ME:  (relieved)  Yay!
ED:  (examines)
ME:  (behaves)
HIM:  (sits quietly)
ED:  (sitting back)  Okay, I don’t see anything structurally wrong.  (rolls to computer)  Now, it’s always good to check but I don’t think you’re taking anything that could—
ME:  …?
ED:  Did you know you’re on Topamax?
ME:  Um… yeah.
ED:  Wow.
ME:  (terrified)
ED:  Okay, so Topamax is one of a very few medications that could actually cause what we’re talking about.  Why are you on it.
ME:  (laughs desperately)  I was put on it to prevent the “optic migraines”
ED:  … Did it work?
ME:  I mean…
ED:  (shakes off)  Okay, so Topamax is sort of known for causing all sorts of vision problems.  Now, I’m not your neurologist, so I can’t take you off this—
ME:  !
ED:  … but I’m going to call her and recommend that you be taken off this medication.
ME:  (begins hyperventilating)  Okay, you can’t just go off Topamax—
ED:  (nodding)  Right, she’ll have a plan for whatever the procedure is to wean you off.
ME:  (wide-eyed)
ED:  And she may decide that for you the benefits outweigh the risks.  I don’t know.  We want to treat you—the whole person—not just your eyes.  But what I do know is that you’ve presented with some pretty serious eye symptoms and your eyes are structurally fine but you’re on a medication that causes serious eye problems.
ME:  … How serious?
ED:  (to Husband)  You’ll want to watch for any redness of the white area, swelling or bulging along with worsening of that blurriness.  That would be something we’d consider an eye emergency.
ME:  What—
ED:  Basically (loads of scary gross stuff) and we would have to remove the eye.
ME:  …
ED:  Or you might just go blind.
ME:  (to Husband)  I’m going off Topamax.
HIM:  (nods)

 

 

A few days later I got a call from my neurologist, informing me that she’d already sent off a new prescription with instructions for how to wean myself off the Topamax.  I was not to deviate from this month-long schedule, no matter how bad the withdrawal got.[5]

 

And let me tell you, sitting through drinks with friends while bugs crawl under your skin is nothing compared to haunting while that’s going on.

 

(hand with ants crawling on it) Formication is the feeling of ants crawling on your skin

You learned a new word today!

 

 

[1] At a ridiculously advanced age, because I’d gotten some bad information from my birth-giver, who is an idiot of the first order but who also can’t stand to see anyone else get attention for anything, even legitimate medical issues

[2] It’s main purpose in life is to prevent seizures, apparently.  But someone figured out it also did a bang-up job of preventing migraines and they started passing it out for that too.

[3] And believe me, Neurologist got a solid shouting-at over the issue.

[4] If you have… holy shit, forget about me let’s talk about what’s going on with you.

[5] Spoiler: it got bad.  Like, an 11-day migraine on top of all the other withdrawal symptoms. Plus those four days I was convinced I had mono before I remembered I was being mean to my body and of course there will be consequences.

 

 

 

 

17 comments on “My Withdrawal

  1. Victor K says:

    I do hate the “bugs under the skin” sensation. It’s almost worse that I know scratching or scrubbing won’t help, if only for the always fun in-brain argument of to scratch anyways and do potential skin damage or ignore it as much as I can but want to pull my skin off for a few hours.

    Also, bad medication side effects suck. So sorry you had to go through that. Here’s hoping all gets sorted out!

    Liked by 2 people

  2. Jack Herlocker says:

    {{{***hugs***}}} + 💚💚💚 dear lady!

    Like

  3. Arionis says:

    Well this is not exactly what I wanted to read before my eye doctor appointment today. I’ve had my fair share of eye issues this year. See how I’m making this all about me? Seriously though, I hope you get back on an equilibrium soon. Maybe you could use it in your haunting by running around screaming that ants are under your skin. Maybe not. I’ll send you some Raid scented skin lotion.

    Liked by 1 person

  4. Rivergirl says:

    That’s positively horrifying. The symptoms….and the fact that doctors over prescribe harmful medications. So sorry you’ve been dealing with it for this long.

    Liked by 1 person

  5. hethrgood says:

    And how are you doing now? Improved at all?

    Liked by 1 person

  6. Holy fuckweazels, lady! So… I presume your haunting routine now includes waving around the so very lovely neurologist’s head on the sharp end of a stick, right? Also, while I get the need to specialize in medicine – there’s just too much information to be a generalist – I really hate when people have to pingpong between specialists who – and this is the key issue – DON’T TALK TO EACH OTHER. It’s so STUPID.

    Anyway, hope you feel better soon.

    Liked by 1 person

    • Two big things sort of conspired against me here: I moved, so there was a gap in treatment and also my new team is totally unfamiliar with my old team and was therefore reluctant to start changing things that seemed to be working; during that gap, a whole lot changed in the world of migraine treatment (new meds approved, old ones falling out of favor as new studies were done, etc) so now that we ARE re-evaluating, there’s a lot to cover.

      Like

  7. I have a friend who has been on Topamax for years for migraines, and she’s been verrrrryyyyy gradually weaning off of it. I get migraines, but not often enough to consider a preventative medication for them. I’ve also had the visual auras, sometimes without migraines, which just feels so bizarre.

    Liked by 1 person

    • One of the most difficult concepts for me to wrap my brain around (but the most liberating when I finally did) was that some migraines come on without any pain at all. I get migraines that are JUST hyperacute hearing plus eye pressure, for example. My head doesn’t hurt, but taking a migrane pill helps the symptoms.

      It’s really weird to try and explain to people that I’m having a migraine but no, my head doesn’t hurt (and maybe they don’t need to whisper although honestly my hearing is so sensitive regardless that it’s nice and I don’t usually correct them) and I can still do things, I’m just going to be pissy and achy.

      Like

      • I used to get pain-free migraines, and yeah, it’s hard to explain. In my case there’s a sort of tightness around my skull, and then my vision tunnels down until, if I’m trying to read, I can see less than one word at a time and everything else is a sort of shimmering hyperspace Nothing – just horrible. And then I black out for anything up to half an hour, and when I come to, all I can do is cry.

        I know the full cycle because these started back when I was at university, and they’d come on when I was cramming for exams, so OF COURSE I’d try to tough it out. Doesn’t work. Nothing really works except to lie down for a couple hours, although OTC meds usually loosen up the band around my skull. I’m always pretty useless and floppy afterwards. I haven’t had one of those for a couple years, so I guess there are benefits to getting old!

        Like

  8. Bugs crawling under skin… so I had my knee replaced, I have a HUGE (ok fine it’s not that huge) numb spot, that… itches… which is all well and good but I. Can’t. Scratch. It. Like nothing makes it go away, which was bad enough but no, now it itches AND feels like there are bugs crawling around under there. Spent a half hour trying to see if touching some other part of my leg will make it go away, but no. So now I just have to act like I’m not a crackhead at work and not scratch things that can’t be scratched.

    Like

  9. emmaclaire says:

    Glad you didn’t go blind and that you only have to wear an eye patch by choice 🙂 I have ocular migraines usually only once or twice a year, thankfully, but I do have an eye appointment scheduled for this afternoon. I’m grateful I read this before I went so I can feel reassured that everything will be just fine, right? Right?!?

    Like

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