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Diagnosed with Silent (Vestibular) Migraines.


This is my first post here. Until a couple of weeks ago I thought migraines were just bad headaches that some people had more often than others. I’ve learned a lot since then, still learning. I don’t suffer from headaches, but an ENT recently suggested I may be suffering from “silent” migraines. The physical therapist thinks they are “vestibular” migraines in particular.

Whatever I have, it started almost 10 years ago, rather suddenly. I was 48 at the time, I am now 57. It was Friday, and I had just finished riding home from work on my motorcycle. As I got off the bike it occurred to me that I had been having trouble just the clutch lever. I had to “think” about modulating it, something that is normally automatic. Then over the weekend I noticed having to “think” about using utensils to eat. Again, something that is normally automatic. I also noticed trembling of my fingers, one finger at a time, though different fingers on both hands would sometimes tremble. And not a rhythmic trembling, like Parkinson’s, but a very erratic trembling.

This continued over the weekend. On Monday morning I was at work and called my sister to wish her a happy birthday. As we were chatting, I had a sudden “event” occur. It felt like my brain had just been flushed down my spinal column. With a spinning sensation added in. It only lasted a second or two but was very disconcerting. I’ve since labeled these as “Vertigo Dumps”. I continued talking with my sister, but about 30 seconds later I realized I had completely lost interest in our conversation. I’m thinking to myself “What the heck, I was really enjoying our conversation, and now I could care less. What is that all about?”

The next few weeks are kind of a blur. The vertigo dumps continued, and I developed a constant vertigo as well, which got worse and worse. I distinctly recall walking to the restroom one time and running my hand against the wall to maintain my balance. And I started having instances where I was unable to speak. Usually in a group situation. I did some quick Googling and quickly convinced myself that I must have MS. Which was quite depressing.

I went to see my doctor. When the attendant checked my eyes, he quickly ran out of the room and came back with the doctor in tow. Apparently, my eyes were darting back and forth, and they thought I was having a stroke! But after some other simple checks the doctor confirmed it was not a stroke, but something else. I mentioned MS, which he thought was worth checking out, so he sent me off for a brain MRI. The MRI turned out negative, which he found to be a big relief. I was not so relieved though, as my symptoms were getting worse.

At this same time, I went to see a homeopathic doctor for his opinion. He thought it might be mercury poisoning from my old fillings. I had coincidentally just started chewing gum, which he said might have started releasing mercury vapor into my system. So, I went to a homeo-dentist and went about having all my mercury fillings replaced. No fun with all the vertigo symptoms and such, as it took multiple visits to get it all done.

Finally, my regular doctor ran out of tests to try. He said he was not sure there was anything wrong with me. I was incredulous. I told him I felt like I was dying. He said I must be low on serotonin and gave me a sample pack of Lexapro for depression. At this point I was desperate and would have taken anything. So, I took my first anti-depressant on that Monday afternoon. I immediately felt “different”. But the funny thing is that my vertigo disappeared about 30 minutes later (and would not come back for several years). I have now recently learned that anti-depressants are one medication used to treat migraines. Funny thing that.

I had quite an experience “acclimating” to the Lexapro. That was a hell in and of itself which I won’t bore you with here. But suffice to say that after a couple of weeks it did start working and I began to feel a lot better. Many thanks to forums like this during that time, as they convinced me I was not truly going insane.

Life went on mostly ok for about 2-3 years, then gradually I started to get Vertigo Dumps again, and always with the subsequent “hangover” period, which felt a lot like depression. Lack of interest in things mostly, low energy. Naps. At work after lunch I usually had to take a nap in my car. And it took an act of God to get me to go back into the office and get anything done. I’ve heard that antidepressants often “poop-out” after a while, so maybe this is what happened to me. After another year or so I finally decided to go and see a proper psychiatrist. After hearing my story, he recommended I go see a neurologist first. Which I did. Another brain MRI and some other scans all turned up negative. So back to the psychiatrist. After some time, he concluded I had PTSD, and we tried a bunch of different medications for that. None of them helped. I did switch antidepressants to Effexor and then Cymbalta, which I am still on now at a low dose.

After some months I found a different psychiatrist who seemed sympathetic. I went to weekly therapy sessions with her for about 5 months with no result. She did not think I had depression, at least not in the typical sense. As my mood can go from ok to bad, then back to ok just in the span of a few hours. This psychiatrist moved out of the country, so I was back on my own.

Now about two years later I have moved to a more rural place to reduce stress. The local doctor here thought I might have positional vertigo. I went to a physical therapist to have that checked out, but he concluded fairly certainly that this was not my problem. But he did suggest I go see an ear-nose-throat doctor in town. So I eventually got around to that. By this time I had found out about Meniere’s Disease, and thought this might be my problem, though I do not have any hearing problems. The ENT thought no, not Meniere’s, but it could be what he called “silent migraines”. I had never heard of this, but reading up on it, the symptoms do line up in many instances. The ENT sent me to another physical therapist, a very good one apparently. She agreed that it was probably silent migraines, with a vestibular cause. This makes sense since I often get the vertigo dumps when I move my head. Especially if I move it in an unexpected direction. But I think there are visual things that cause them too, as sometimes I will just be sitting still watching TV when I get one. Or just going for a walk.

If it is migraines I am suffering from, at least that gives me something to hang my hat on. Since for the last 9+ years I’ve had no idea what is wrong with me. I just figured I must be defective in some way. I can relate to what some people refer to as the “hangover”, since I have that pretty much non-stop. I have a PhD in Mechanical Engineering and used to supervise satellite builds and launch rockets for a living. I could never do that now. Even the most basic math is a challenge. I live in a constant state of “background” vertigo, knowing that at any instant I am subject to a “dump” and the following “wooden head” feeling. Another way to describe it is that it feels like all of my sensory inputs are being funneled through a straw. I have trouble listening to people or looking at things. I just have to go lie down with a pillow on my head and “reboot”. Usually a couple of hours later I am better.

I have now learned about “triggers”. Something I never would have thought about before knowing about migraines. Unfortunately, the triggers listed most often are my favorites, coffee and red wine! I am trying to wean off of coffee now, which will take a little while. I’ll see how that goes for a few weeks and then cut out the wine. Follow the scientific method so to speak, only one change at a time.

So that is my story. Sorry about the length, but maybe it will help someone else out there.

  1. Hi Gustave, thank you so much for taking the time to share your story with the community! You have certainly been through a lot on the journey to an accurate diagnosis. I hear how overwhelming and scary these symptoms have felt for you. It is so frustrating when doctors cannot easily pinpoint and explain what is happening with your body. I hope as you and your doctors work with this new diagnosis you are able to find treatments and techniques to help better manage the brain fog and vertigo symptoms you have been experiencing. Please keep us posted on how you are feeling and what you learn from eliminating different potential triggers. Wishing you a gentle day. ~Allyson ( team)

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