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Old 10-14-2020, 10:15 PM
bachissimo bachissimo is offline
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Join Date: Jul 2014
Posts: 153
8 yr Member
bachissimo bachissimo is offline
Member
 
Join Date: Jul 2014
Posts: 153
8 yr Member
Default 6 months symptoms free (A migraine hypothesis)

I first came to this forum in 2014. My condition, is just like anyone else here, peculiar.

Between April 2019 and June 2020, I had about 15 bad days in total. In fact, for a good 6 months stretch, I started a startup, and was working 12 hours a day. On the computer. My convergence insufficiency (eyes) did not change, I still had to wear prism and look at a distant screen (2 feet) but I handled the computer screen and sounds almost normal. Listened to music and podcasts. Played hours of chess online, improved tremendously. I play at the level of my experience years, so I do not see cognitive issues there either.

I was not able to do half of that the prior year. Isn't that a mystery? And then suddenly one week I overload my system with excess work/listening/music and I got a migraine that started in June 2020 and almost lasted till August. And now I am worse than I was a year ago. I am back to not being able to listen to music or do much computer work.

My story seems to be quite weird, but this is one of the aspects where I feel there is a migraine issue underlying this that causes most of my symptoms, even when a headache is not present. People who deal with vestibular migraine have similar stories. But I don't belong to the vestibular migraine group in hat my symptoms were triggered by a concussion, and my key deficit is related to vision and can be diagnosed objectively. Something very uncommon in the vestibular migraine patients.

I started taking newly approved migraine medications (Aimovig, Emgality, Ubrelvy). And I can tell you, they help me. But not sufficiently. Aimovig and Emgality are supposed to reduce the number of migraine days a month, but what they do in my case, is provide a temporary relief. Ubrelvy is newer, it is called abortive medication, in that it can stop a migraine within hours after its occurance. I am using that, and it helps. I am less dizzy and nauseated and my headaches go away. But none of that sticks for more than a day. I cannot use this every day (per my doctor).

But I think in my case I have established a connection with migraine. I went on years overlooking this but the picture is getting clearer. I have good reason to think that my injury that led to severe vision issues, leads to migraines whenever I overload my visual process. The same goes for the auditory process, although for that one there is nothing to diagnose unfortunately, nor there is any therapy to be had, unlike vision where I can work on exercises.

To me this is a mixed bag of news. The real problem is the length of these setbacks. Had it been a week, I can experiment more, or my life would be more manageable. But I have seen it over and over that one trigger can lead to miserable months.

I am going to see Dr. Zalinsky (for the vision) and will update. IF you have similar symptoms to mine, I suggest you speak with a neurologist and see if she suggests a course of migraine drugs. The new drugs I mentioned have very low side effects. Prior to them, migraine drugs were a nightmare of side effects.

Again this is just one story, and only a subgroup of PCS patients have similar symptoms to mine.

You can read more about my story if you are curious in my previous post. I am afraid someone would think that I am trying to advertise drugs. Please don't. These are different companies anyway. And I just said, I get a relief for a couple of days at most. But using them as abortive medication has helped me go through the darkest hours.
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