Posted 3/25/2016 10:58 AM (GMT -7)
Reading everyone's testimony is heartbreaking and I really have great empathy for each and every one of you. My husband suffers from vestibular migraines and has been trying to manage it for 4 years now. It started about a year after he finished dental school. He had bought a practice and about 6 months after, he symptoms began. Here he is, fully equipped and ready to work, ready to make his mark on society and he can't work. He spent 8 years in school to do what he was most passionate about and now that the time is here, he's bound to the couch.
He typically runs through patterns of good and bad, thankfully it's never constant. However, when he isn't doing well, he'll be down for 2-4 months. When he's functionally normally, he's up for 2-4 months. He says his vision becomes distorted and blurry and describes it as though he's wearing someone else's glasses. He also sees what he calls "squiggles" in his vision. The best comparison he says is when you are looking out on a road on a hot summer day you see hot "waves" coming up off of the pavement - that's what he sees when he is symptomatic. He sometimes feels sharp pain in his head and/or ears. His eyes will burn and incessantly twitch. My heart breaks for him and although he's frustrated, he is a man of faith and through Him, he keeps a relatively positive attitude.
I remember the first morning he noticed something strange. He woke up for work and had mentioned that he felt nauseous and eventually threw up. He had quite a bit of wax build up and we thought that maybe all of the wax that was sitting on his eardrum was causing him to feel off balance. Unfortunately, he didn't feel any change once it was removed by a doctor.
We've seen optometrists, ophthalmologists, neuro-ophthalmologist (yes! there really is such a specialists!), neurologists, we've been to Mayo before he symptoms where recognizable as VM, had an unmeasurable amount of chiropractic visits thinking that it was his back that wasn't sitting right, visited 2 ENT's, had a few MRI's, CAT scans, blood work, spinal tap, acupuncturist, taken a food intolerance test, purchased migraine glasses, sphenocath treatments, massage therapists.... the list goes on from here.
Out of all of these, I want to emphasize his sphenocath treatment because I have yet to hear anyone talk about this in the forums. Although I'm not entirely sure, I think it's so rare to hear about it because it truly is a new treatment. I will say, out of everything we have done, this is one that really does give him immediate relief. It doesn't cut it completely but it give his body a fighting chance. Science has shown that this treatment has helped a lot of people. It's only takes 45 minutes and is incredible simple. In this procedure, you have catheters placed up your nostrils one at a time and the doctor pours anesthetic up your nose to numb the group of nerves at the base of your brain. The idea is that when it wakes up, hopefully the nerves will naturally reset themselves and resume a natural firing pattern. Yes, this treatment typically is for people with the tradition painful migraines but we have found this helpful for my husband's VM.
Long story short, it seems like we have tried everything. Treatments that seemed most logical and those that may have seemed a little off kilter. As you all know, when you are so miserable and desperate, you will try anything. On a semi-comical side note, my husband decided that maybe he'd try wearing an eye patch to rest his eyes one at a time. He even tried ear plugs to rest his ears. In the end neither of those worked but it's a testament that you really will try anything. You have to be an advocate for your own health. Who knows, maybe your crazy idea might be the cure!
Even after all this, I think we are still learning new ideas on how to manage it. This gives me hope that maybe someday we'll have him running like a normal human being. Here is what we learned that help him thus far:
-Gluten, alcohol and caffeine are all strong triggers. There may be more but we are unaware of them at this point.
-Stress (good and bad) is a trigger. Realistically, it's unavoidable but he has learned how to manage it better.
-Regular sleep patterns are so important. Staying up late and little sleep can set him off.
-Exercise - I've noticed people mentioning how important this is even DURING an episode so we are excited to try
this. He exercises when he's feeling good but stops when he's symptomatic. We noticed that when he's
exercising regularly, he has longer periods of feeling "good".
-The bible and lots of prayer - truly the most important. Without God, I really doubt my husband would be with me
right now. Those who endure the hardship of this understand what a mental struggle this is.