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I've been having some really unusual symptoms for about the last year, and, even after seeing numerous doctors (primary care doctor, ENT, neurologist, neurootologist, etc.) and having multiple tests done (blood testing, VNG, MRI, neuropsychological testing, etc.), I don't know if I know what's causing them. I also haven't had any success in noticeably alleviating them so far. I'm now starting to suspect my symptoms may actually be due to a very unusual form of chronic migraines (because it's the only thing I've found that seems to potentially explain all my symptoms, even the weird ones). Therefore, I wanted to get input from people who have experienced migraines themselves and know more about them.
First off, I posted a discussion in the Vertigo and Dizziness board about the same symptoms a few weeks ago with a lot of detail, so I'm going to post a link and give a shorter version rather than repeating it all in detail. That discussion is here:
Anyway, my most persistent symptoms are a constant dizziness or lightheadedness (with mild, but noticeable, balance issues) that fluctuates but never goes away. I don't feel like anything is spinning or I'm going to throw up, but I do feel faint sometimes, so at least part of it is probably presyncope. My other symptoms come and go from day to day and moment to moment. The most disruptive of these are things like difficulty concentrating, "zoning out" a lot, lack of energy, and feeling weak (but not in pain), especially around my joints.
However, I do also get headaches, although they are often barely noticeable, and, even when they are worse than usual, they are highly uncomfortable, but not really painful. It does definitely feel like a pulsating or throbbing even it's not severe, though. I have a hard time identifying the location of these headaches on my head, but the pulsating does seem to be asymmetrical and at least sometimes occurs around my left temple just past my hair line (I don't think that's the only location, but it's the easiest to identify).
Then, finally, there are the weird symptoms that mostly seem to be brought on by even relatively mild physical activities I used to have no problems with (going up and down stairs with laundry, picking up dog poop in back yard, etc.). The most noteworthy thing is feeling "winded" way too easily as though I just ran laps around the block. My heart rate goes up and I find myself having to stop and catch my breath just from doing things I had been doing without problems right up until my symptoms started. Sometimes I also get mild tremors in my hands, excessive sweating, or a burning feeling in my throat (probably dryness/hoarseness). That's not an exhaustive list of symptoms I've experienced, but it's most of them.
As an explanation, chronic migraine-associated vertigo or just chronic migraines in general seems to fit my symptoms very well at the very least. Although I am a man and migraines are more common in women, I have a family history of them with both my mom and sister experiencing them (without the headache in my mom's case). I also have a low-frequency hearing loss in my right ear only that has remained about the same for around two decades. I read that this is associated with migraine-associated vertigo, whereas progressive hearing loss is associated with Meniere's Disease. As for the nature of my symptoms, it would make sense that they all fluctuate or come and go if migraines are coming and going, too. Migraines also do tend to worsen with the types of activities I described (i.e. stairs). In addition, I noticed early on that my symptoms sometimes seemed to worsen on days when the weather changed a good deal from the previous day, although it wasn't a sure thing and I kept wondering if I was just imagining the pattern. Chronic migraines are also the only explanation I've found that could potentially explain every single symptom I've been experiencing. Even symptoms I had noticed but hadn't paid much attention to, such as yawning a lot or body parts seeming to "fall asleep" more easily than before, turn out to be migraine symptoms. I find it highly unlikely that the pieces would fit together as well as they do by coincidence.
The problem is that, although migraine explains my symptoms very well, I don't fit the typical description of the diagnosis anywhere near as well. For one, my headaches range from barely noticeable to very uncomfortable but not painful. That might be similar to my mom not having headaches with her migraines, but it's not what's expected for migraines. The bigger problem is that I have very little sound sensitivity and even less light sensitivity. It's so mild that I still am unsure if I have any light sensitivity at all or if I was just imagining things. Considering these are some of the first symptoms associated with migraines, this may make it very hard to convince a doctor that it's really migraines. Finally, migraines are supposed to occur in distinct phases, usually with the person having some sort of indicator when a migraine is coming. However, I notice fluctuations, but I can't even tell whether I'm in prodrome, attack, or postdrome at any given moment, much less when an attack is coming.
Those details could make it very difficult to get diagnosed with migraines because they're just so different from the typical profile of a migraine sufferer. I meet with the neurologist on the 20th to try to "argue my case" on this, but I still have no diagnosis for these symptoms. Without a diagnosis, there's only so much I can do on my own, so I hope that I'm somehow able to persuade my neurologist about migraines as an explanation.
So what do the rest of you think? Do my symptoms sound like they could be an unusual form of chronic migraines to you? If so, do you have any advice for convincing the neurologist? If not, do they sound more like some other condition?
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