Optical Migraine?
I've been having some crazy visual symptoms for the past couple of months. It started with some slight flickering around the edges of my vision in one eye or the other. At first I thought I was getting auras again after decades without them. But I have daily migraines, so it's hard to tell really.
Then I began to wonder if it could be a side effect of the Topamax I'm taking. In the back of my mind, though, I'm worried about retinal detachment, as I'm extremely myopic. I decided to wait until my appointment with my neurologist on 7/28 to discuss this.
Suddenly over this past weekend, the symptoms got way worse. Instead of a slight flickering, I began seeing crazy jagged lines whipping all throughout my visual field. The lines didn't block my vision, just whipped around through it. This phenomenon always occurred when I went from a dark place to a light place.
So now I started to get really worried, even though I figured it was a long shot that both of my retinas would detach at once. I went to see my optometrist. First he ruled out the Topomax, because he said that usually it tended to change a person's far-sighted vision, and mine was still the same. Then he dilated my pupils and checked my retinas thoroughly.
The optometrist said my retinas were just fine, and said what I was having was optical migraine. When I looked up optical migraines, I read that these usually last for several minutes or even half an hour or more. Mine only last several seconds or a minute at most. Can they still be categorized as optical migraine? The only time I've had anything similar to this it was a side effect of the fertility drug Clomid, and my doctor took me off of it immediately.
Hi Jules2dl,
May I ask how long you've been taking Topamax? The potential visual side effects of Topamax can be quite serious and lead to blindness. This typically occurs within the first month or so of starting Topamax, but always a good idea to discuss it with your doctor and you are on 7/28.
According to the International Headache Society's International Classification of Headache Disorders -III, beta or ICHD-III beta 'optical', 'ocular' and/or 'ophthalmic' migraine are not recognized as diagnosis, rather they are used as descriptive terms. To read more about migraine with aura (often confused with the above terms) take a look at this article; https://migraine.com/blog/those-ocular-optical-and-ophthalmic-migraines/.
Our migraine patterns can change over time, but any time we experience these changes it's important to discuss them with our doctor as you are going to do. Aura symptoms can last anywhere from a few minutes to 60 minutes. There are actually four phases of a migraine; prodrome, aura, headache and postdrome - but not everyone experiences each phase. Let me share that information with you; https://migraine.com/migraine-basics/migraine-phases/.
I hope this helps, let me know how you make out at the doctor!
Nancy
Thank you Nancy, for your most thorough reply!
I most certainly do intend to discuss my visual symptoms with my neurologist on the 28th. The Dr who diagnosed the optical migraines was only an optometrist, and I went to him just to be certain my retinas were okay. But he also told me that Topamax usually affects far vision, so I'm not aware of how it could cause blindness. Do you know how? I'm very curious about the mechanism at this point.
I've been taking it since this past November, I believe. I've been on it before, but not at this dosage (200mg/2x daily).
I've read the articles you've referred to me, and I again thank you for your most informative reply! I'll let you know what the doc says.
Blessings,
JulieSo I just googled "how does Topomax cause blindness?", and was referred to migraine.com for the answer! Apparently, it can cause open angle glaucoma, which the optometrist also checked me out for.
But it served as a great reminder to me of how fortunate we all are to have this website as a resource. Not only can we keep up to date on the newest treatments and learn how people are responding to them, but we are perhaps for the first time in our lives a part of a community of people living with migraine just as we are. People who understand. What a tremendous blessing!
God bless all the folks who make migraine.com the great resource and community that it isSara, I can see how that would be very frustrating for you. If you knew the visual symptoms were an aura, you could take abortive meds immediately and perhaps stave off the headache. If the symptoms were not prodromal aura, but just isolated incidents, you certainly wouldn't want to "waste" your abortive meds on them. I haven't run into that problem (yet.). But then again, I have a migraine every day, so it's difficult to really say. I see big black spots or orbs occasionally during a really bad migraine, and these block out portions of my vision.
When I saw the neurologist on the eighth, his conclusion was ocular migraine. He kept the dose of Topamax the same and raised my dose of Elavil from 100mg to 150 mg. because I was on the 3rd week of a killer #10 headache. He gave me an occipital nerve block on the left side of my head, which I'm not quite sure ever kicked in .
I was still at #10 about 6 hours later, so I took 3mg of dexamethasone. The headache broke later that night on the left side. Tuesday morning, the 9th, a #10 headache on the right side woke me up. I took 3 more mg of the steroid,
2 vicodin left over from my septoplasty, and 20 mg of toradol. I'd had enough pain, I didn't care if I wasn't supposed to take vicodin, I didn't care if I wasn't supposed to take the steroid more than once a month. All I cared about was ending the pain.
Wednesday the 10th was a miraculous day...I didn't have a headache! Not even a little background headache. Not even a take-2-aspirin-and-you'll-be-fine-headache. I mean NO HEADACHE WHAT SO EVER!!!
It has been decades since I have been able to say that. I couldn't even remember how it felt to not have a headache,
because I've always had chronic daily headaches along with migraines.
So I posted it on Facebook, and I got all of these bummer comments about how sad it was that I was so overwhelmed with joy about 1 headache free day. Hey, I'll take any miracle I can get!!
