I've been suffering with mainly painless ocular auras and have gotten vestibular migraine (the worst!) and retinal (total blindness) since being in a very stressful situation two years ago.
I've been to an opthalmologist who sent me to a neurologist. Four MRI's of the head and neck were normal. My internist sent me to an ENT specialist who said, after two days of tests: "I'm sorry I can't help you, this is all migraine."
I was on Calan for months and that (calcium channel blocker) did not help;
I tried Topiramate and couldn't converge my eyes, it was dreadful;
It was recommended that I take Cymbalta: no different than Lexipro;
I think there were even a few more drugs that were worthless.
I had months of acupuncture and Traditional Chinese Herbs. No appreciable improvement; massage therapy weekly helped a bit and I found it interesting that the therapist keeps finding knots in the area of the occipital lobe as that is the eye area.
I bought Gunnars glasses which are supposed to help if you are a heavy computer user. Nothing consistent.
My head has been injected with Botox and I can't really say it works.
In September there were SIX days when I didn't have an event with head pain or some kind of ocular. Then things began to improve:
I bought the Cefaly apparatus and have been using it for three months, starting in July. I ordered it via paypal and sent a doctors Rx via a scan/email to the company in Belgium.
The directions are at Cefaly.com.
I was ready to try anything. (The next quest will be exploring food allergies which I believe play a big part in all this as the earth is riddled with chemicals and food is not what it used to be: see the movie Food, Inc.)
Anyway, I still get "episodes," but I am getting them less frequently and less consistently in length. Some are barely perceivable.
I feel the Cefaly apparatus is the reason!
I use it religiously, mostly in the evenings. Note: It has not intervened while I had a headache or ocular episode and I often feel like my forehead has the tickle feeling that the electrode is on. The machine stimulates the facical trigeminal nerve which has been said to be a migraine cause and builds a kind of resistance. I know there is another company coming out with a machine that stimulates another part of the head.
I personally feel that all these drugs people are taking are dangerous and can't do a body good but we get desperate from pain and discomfort.
From what I read there is a Canadian version of Cefaly that has 3 settings, one for intervention and another for massage along with the treatment. The Belgian version has one setting; there was no option to choose devices.
The feeling is not particularly comfortable at first but you build up a tolerance and get used to it.
It is about $300. with one electrode--I bought an extra 3 electrodes for about $25. and the electrodes must be replaced; they say every 20 days but mine have lasted for a month and a half by keeping it on the original plastic and in the envelope it comes in and then in a baggie.
I think it is worth a try; anything to get off all that medication!
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