[bachissimo]

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.

[BurritoWarrier]

Bachissimo,

I have different symptoms and a different trigger, but I also ended up with a migraine diagnosis after many years of dealing with symptom exacerbation after triggering events. I also had an initial concussion that set off the migraine disorder. I have some visual symptoms and some somewhat severe facial pain where my sinuses are (which is my presentation of "headache"), but my primary issue has always been vestibular (I've been diagnosed with vestibular migraine, but one of my doctor's doesn't really like those sub-types...thinks it's all just migraine and each case is unique), and sudden movements seems to be what triggers new episodes. A new episode can set me back 6 months or so, which is frustrating.

Like you, I also have partial symptom control with migraine medication. I'm currently on 100mg of topiramate which has almost completely eliminated my facial pain and visual symptoms. I know this because I tried going off if it and it all came back. It hasn't helped my vestibular symptoms, but physical therapy has.

I do think it's worth while to spread stories like this one here because I wish I had seen this year's ago when I felt lost. Most concussion doctors don't know much about migraine and unless it presents in it's classic form (super bad headache for 48 hours then you're fine), it can be really confusing for them to identify. The neurologist I see now told me it's super common for migraine to begin to present after concussion or more significant head injury, so I do feel like there's a bit of a disconnect where some of these ongoing PCS cases can be perpetuated by migraine, but the connection isn't being made because the doctors treating the patients aren't trained in it.

[bachissimo]

Warrior,

Thanks so much for your response. I am amazed to have found someone with a similar situation that can experience a 6-months setback. You said it happens after a sudden movement. That is interesting.

Not feeling well today but I wanted to respond, and hoping to keep the conversation because it is not everyday that I see a similar case. 2 questions please:

- Vestibular symptoms: you mean dizziness/balance issues? I have that, after visual stimulus.

- You said you are on topiramate and it has helped. You still experience those 6-months setbacks while on it? I tried it for a week, and felt suicidal so I had to come off of it immediately.

Looking forward to hear from you.

[miss2000]

Hello there!!

I’m really sorry you’re going through this nightmare of the injury. I can also relate.
I got my original Concussion in August 2019. After an improvement and thinking I was ready to go back to work although we’re still not feeling 100% one morning I woke up feeling like I was back to square one. I could not explain what happened.
I had a similar episodes throughout the year where my setbacks would last anywhere from two weeks to two or three months.

I have tried a bunch of different migraine meds that did help to alleviate the symptoms but made me feel so much worse so I didn’t know what was easier to have a migraine or to take the medicine to knock the migraine down but still feel like garbage.

I recently I have been exploring my neck because I’ve been hearing that the neck symptoms could be similar to the symptoms of a post concussion syndrome. It appears that any time I would have a PT on my neck or Chiro manipulation , I would go through a setback and a Severe migraine.
So I am deep digging right now into my neck symptoms by a scheduling the proper imaging

I have been also having a lot of vision problems and waiting for a pair of prism glasses and vision therapy. Hope this helps.

[Mark in Idaho]

The neck issue is well worth pursuing. The only problem is standard imaging is useless. The instability of a subtle neck injury is not imageable.

PT and chiro often trigger symptoms. PTs work on range of motion when the unstable upper neck is not ready for range of motion therapy.

Chiros like to do the Twist the head and pop the neck adjustment. That is too aggressive for an unstable neck.

My PT did gentle traction with gentle limited range mobilization and trigger point release to relax the muscles and allow spasms to let go.

A chiro I used did similar gentle treatment after very careful massage.

I had to do my part by minimizing stressing my neck by being very disciplined with head and neck posture, especially when sleeping or even just napping.

It took 2 years of discipline and gentle therapy before my neck was stable enough to not need to be so careful.

Early in the process, I had CT Scans and MRIs with no abnormal conditions noted. A special X-Ray series did find I have cervical ribs/false ribs. This was helpful to my PT as she worked to help my neck stabilize.