Since Monday, I noticed that my vision was strange. I wrote it off as a headache, fatigue, or my imagination. Until this morning. I was in the kitchen trimming some chicken for homemade chicken noodle soup for lunch for the guys, and I realized that the chicken was blurry. Now, since an issue with a scopolamine patch (you can google the side effects regarding vision) post-surgery in 2006, I've worn reading glasses; however, I don't normally wear glasses to do anything else. This was weird. Then I realized that everything else around me was blurry. This evening, I asked Billy to Google the two medications I'm on for my migraines and cluster headaches (lithium and Topamax). BINGO!



Did you catch the part about 23 out of 825,000, and that was back in 2001? I'm playing the freaking lottery. I'm tired of being in the minority. Heck, just being a woman and getting cluster headaches, I'm beating the odds. I'm sure it must be a sign that I should play the lottery, right?    I've got to smile. I've already had the half hour of pure bawling from just being so over all this. I'm just so emotionally tired at this point. Tired of these headaches.  Tired of feeling like crap.  Tired of feeling like I'm totally useless to my family.  I sure didn't need this.

From what I read, it seems like this should reverse itself once the medication is stopped. I sure hope so. If you read this and wanted to throw a prayer two my way, it wouldn't hurt my feelings.  

I have a call in to the neurologist this morning.  Of course, my incredibly wonderful neurologist is out of the office until Monday (and FWIW, my incredibly knowledgeable g.p. who prescribed oxygen for me prior to seeing the neurologist is off on Thursdays!), but his associate is in, and I left a message with the nurse, so hopefully, I'll hear something soon.  I read you're not supposed to stop Topamax cold turkey.  What they heck is THAT going to be like this weekend?  LOL  Oh, the joy of all this craziness.  Thank you for letting me vent, my new friends.   I'll let you know if we find out anything new.

Or if I win the lottery. 

Neurologist just called back and said to see an opthalmologist.  TODAY.

Compr Ophthalmol Update. 2007 Sep-Oct;8(5):271-6.
Review of sulfonamide-induced acute myopia and acute bilateral angle-closure glaucoma.

Panday VA, Rhee DJ.

Wilford Hall Medical Center, San Antonio, TX, USA.

Sulfonamide medications can cause an idiosyncratic reaction, resulting in acute transient myopia and acute angle-closure glaucoma. The risk of an adverse reaction to a sulfonamide is approximately 3%, and the exact mechanism of the myopia and angle-closure glaucoma remains controversial. Typical clinical presentation includes bilateral involvement with blurring of vision that generally occurs over minutes to hours, nausea or vomiting, red eye, and headache. Examination may show conjunctival injection, corneal edema, anterior chamber inflammation, and flat or shallow anterior chamber. Diagnosis is based on clinical suspicion, although an ultrasound biomicroscopy may be helpful in diagnosing swelling of the ciliary body.

TOPIRAMATE, A SULFA DERIVATIVE, IS USED FOR THE TREATMENT OF MIGRAINES OR SEIZURES. THE SIDE EFFECTS INCLUDE ACUTE MYOPIA AND ANGLE-CLOSURE GLAUCOMA. TREATMENT OF THIS CONDITION IS PRIMARILY SUPPORTIVE ALONG WITH DISCONTINUATION OF THE MEDICATION; TOPICAL MIOTICS AND PERIPHERAL IRIDECTOMY ARE NOT HELPFUL. IF INTRAOCULAR PRESSURE REMAINS UNCONTROLLED, ADDITIONAL THERAPIES, SUCH AS TOPICAL INTRAOCULAR PRESSURE-LOWERING MEDICATIONS, HIGH-DOSE STEROIDS, AND TRABECULECTOMY, MAY NEED TO BE CONSIDERED.

Publication Types:
Review

PMID: 18201514 [PubMed

Yes, cold turkey.  Not sure what it's going to be like.  It's a very scary thought, and it's causing a bit of a panic attack really.  O2 is standing by along with narcotics like LorTab and Stadol (Butorphanol) and Percocet, but I'd rather not go there (the meds) if I don't have to.  I've been free of them for three weeks, and it would be like taking a huge step backwards.

Got back from the ophthalmologist.  Aside from the fact that the guy was a pinhead -- he was trying to figure out my eyesight prescription and attempting to convince me that I probably needed glasses for distance since I'm now past the tender age of 40.  I just kept thinking... did this dude not read that I'm here because the neurologist sent me?  My eyesight is NOT normal today and this just started THREE days ago?  I kept repeating this to him, and it was like talking to a brick wall.  Nevertheless... my hard parts -- optic nerve, retina, and cornea -- are all just fine, which is wonderful news.  The blurriness is probably attributed to the Topamax (gee, ya think?), and he couldn't tell me if it was going to be permanent or not.  We'll just have to wait and see.  Since these are MY eyes, I'm going to err on the side of caution and listening to the neurologist who prescribed the medication in the first place.  Since he says not to take it, I'm not taking it.  I just couldn't exactly figure this guy out.  Was he trying to sell me glasses or something?  Did he not hear that my eyes were fine up until Monday and it's not that I have a fear of wearing glasses or something -- in fact, I DO wear glasses to read.  I don't know.  I'm just glad I don't need to go see him again.   

Many many thanks for the prayers and good wishes!

Well, my eyesight seems to be going back to normal, which is absolutely amazing.  I'm still not liking that I'm in this teeny tiny percentage of people who's eyes get messed with on Topamax.  It seems to have been muscular instead of damage to the hard parts of the eye, so I am eternally grateful.

72 hours after going off Topamax cold turkey, and this is really not good.  I asked my husband to Google withdrawal symptoms and what I might expect (to kind of do the mental checklist of what I was already experiencing), and based on what patients have posted, Topamax is not something I would have gone on had I been aware of the bigger picture.

Now, I'm not saying that Topamax doesn't help with the headaches because it definitely helped with my daily migraines; however, when I weigh the side effects vs. having few migraines... that's a really tough call.

What I'm experiencing now:  first, let me say that I'm not checking out on you.  I promise.  It's not even in my realm of possible life choices.  That being said, I sat there yesterday, bawling, and telling my husband that I could certainly see how that was a feasible possibility to some people (no, I didn't use those words... it's a wonder I can put two thoughts together lately!) because for the first time in my life, I didn't want to be in my body.  And yes, I know it's the drugs making me have suicidal thoughts, as they're not a normal part of everyday life for me.

I am nauseated and have zero appetite.  (Found out that very low O2 with the mask alleviates nausea!)   I'm dizzy and just about passed out in the shower today for no apparent reason.  I'm itchy beyond belief.  I can't sleep; however, when I do, I have crazy dreams verging on horrific nightmares.  I'm back to stuttering from pain of the headaches.  I am acting like a psycho-lunatic and crying -- I mean absolute bawling -- for no reason. I have cluster headache-like stabbing pain in the left front quarter of my head and face that comes and goes randomly.   Even worse... the migraines are back with a vengeance, and the cluster headaches, which had lessened in intensity are just as bad as when they first started.

Thankfully, two M O2 tanks arrived Friday, and I'm taking full advantage of them for the cluster headaches.

My neurologist was not in last week, and it was his associate who told me to stop taking the Topamax and see an ophthalmologist.  However, I'm left here hanging until I can get through to him next week and get on something new.

Another thing that annoys me about all this is that I had stopped all the narcotics (Percocet, LorTab, and Stadol (Butorphanol)) cold turkey three weeks ago after meeting with the neurologist.  He explained that even though I was only taking the prescribed dosages, I'd been taking them so long that my body was dependent on them and that we had to get them out of my system to get my pain receptors back on track for meds that WEREN'T narcotics (like the Topamax and Lithium).  Well, damn if I'm going to sit here for six days and suffer through the migraine pain on top of the withdrawal!  I called my g.p. and explained what was going on, and I'm taking LorTab to get me through... only taking the bare minimum so that I don't smash my head through a wall to change up the pain a bit (oh, how funny to say that to people who actually understand what I'm talking about!).

Again, thanks for the prayers, My Friends.  Please keep them coming.  I have a feeling this is going to be a rough week.