Down the Rabbit Hole… And Back Again
“It’s no use going back to yesterday, because I was a different person then…..” Lewis Carroll, Alice in Wonderland
The constant reverberation in my head was “what am I doing here?”
It’s funny, and not “haha” funny, more like “what the heck?” funny……what life throws at you. But everyone has their respective battles, some worse than others. And these struggles change you, morph you, mold you, challenge you, make you into a different person, skew your perception of good and bad. Others perceptions of you change, you lose and gain relationships along the way, and most importantly you learn.
I think what I’ve learned through the journey through vestibular disorders so far is that anger is my worst enemy, yet it’s the easiest emotion to feel; it and frustration. Anger, because you feel so darned helpless, and confused, because you don’t know what’s going on. You can’t help, and there are so few outward symptoms to see how it’s affecting your afflicted loved one so therefore not only do people around you not believe your loved one but they don’t believe YOU! Frustration because of all the rest. And the rest is a giant mound of ARGH!!!!!
There is so much frustration surrounding vestibular disorders and just taking into consideration the variety and the number of them is frustrating in and of itself. They are so misunderstood, misdiagnosed, alike in their symptoms. My two greatest frustrations for me, based solely on my experiences so far, are the drugs doctors throw at you and the inability to fix anything.
I heard someone say one time “doctors are practitioners, they PRACTICE on us as patients.” I know we can all relate to this. That dreaded round robin of misdiagnosis.
And another repeated mantra amongst all of us in this vestibular journey is:
BE YOUR OWN ADVOCATE.
I can’t stress how important those 4 words are.
My poor husband has spent years as the proverbial “guinea pig” of trial and error where doctors and pharmaceuticals were concerned. Lexapro, Effexor, Valium, Nortriptyline, and a drug used for epilepsy patients that made him see people that were BLUE! Then the side effects…..good grief, the listed side effects were page after page and none of it was good.
Let me say, too, that I am completely aware that sometimes drugs are a welcome reprieve, but I wanted to share what we have been doing in the hopes it will help others possibly limit or erase the number of drugs used. I know it won’t work for everyone, but I also have realized through this process that food, supplements, slight exercise, and other methods can greatly improve quality of life. And most importantly for us has been patience, which is the most difficult of all to practice.
The best conversation I can recall this year was diagnosis day, February 2016, when Dr. Carey told James and I “let’s try this holistically” first. I wanted to cry. We had just flown 3,000 miles to hear this. I waited 8 years, and James had been waiting nearly his entire life. The relief…it was like someone had just told me I had won the lottery. No brain surgery! Yes, that was a prior recommended treatment, too. Let’s drill a hole in your skull, lift your brain up, and plug a hole. Can’t imagine having that done unnecessarily. However, for those afflicted with SSCD, that’s the required surgery for them to get relief, so it’s a real thing. That’s a whole other post and for those afflicted with full-blown SSCD, YOU HAVE MY UTMOST RESPECT!
James’s symptoms, and in no particular order, have been: tinnitus, brain fog, PTSD-like anxiety, depression, problems with getting to and staying asleep, unrelenting vertigo, nausea which leads to weight loss, neck pain, dizziness, migraines, vision distortion like halos and rainbows, balance issues, sleep disturbances like weird dreams, waking up dizzy, incredibly amplified hearing, ghosting vision, and emotional volatility.
So, here is what we have been doing.
Intially, after coming back from Johns-Hopkins, we got the book from Dr. Bucholz. Let me just say it’s not easy, not in any way, shape, or form. At all!! But if you were like us, it was almost a last resort so come hell or high water, we were going to do it.
In James’ case, because he is dual diagnosed, we could tackle one holistically but not the other. No matter how you spin it, vestibular disorders affect brain function. The SSCD we couldn’t really do much about, because his dehiscence has only progressed so far, may not go any further, and the only solution for it is brain surgery; however, his migraine associated vertigo, aka MAV or vestibular migraine, we could try and treat.
Two things I’ve learned in the past 8 months have been how much diet/supplements and stress affect him. Diet has an enormous effect on migraines. Huge!!!! How I’ve been able to explain it to others for it to make sense is that it’s like an autoimmune condition of the brain. Autoimmune in essence is your body attacking itself. Similar concept with diet in that what you put into your body, your brain sort of attacks itself in that it goes haywire. And again, here is being your on advocate. You begin at baseline, ground zero, and begin building your diet from scratch.
Initially James lost weight, and weight he couldn’t really afford to lose. I always tell him he is one of those weird people who has to fight to keep weight ON! I know, we think this is a blessing. He’s been teased his entire life to “eat a hamburger or four.” He has a metabolism that is always at Mach 1. He began with fresh proteins: organic, grass fed (not grain! I’ll explain later) beef, lamb, chicken, wild caught fish, non-farmed tuna, fresh veggies such as kale, chard, okra, asparagus, corn, leaks, cucumbers, carrots, lots and lots of dark berries, apples, mangos, nectarines, peaches, yams, broccoli, cauliflower. And grass fed because what the animal eats, YOU eat. Grains can be migraine triggers, so if the animal is pasture/grass fed, you aren’t taking in the unwanted grains they feed to the animal.
It slowly began to work. And again, here is where patience comes in. You must stick with it. It’s not an immediate relief, it takes weeks to months to get the crap out of your system. He began to feel the fog lift, began sleeping better, little less vertigo, and a bit less anxiety.
Next, I insisted he begin seeing a chiropractor. And we have THE BEST chiropractor!! I can’t thank Dr. Adam Spindler enough. I know a lot of vestibular patients experience neck problems. They are always tensed up because of the feelings of anxiety, and the constant vertigo affecting your balance, you are always tensing up because you feel like you will fall over at any second. There have been times in the past when James was on hands and knees crawling up our stairs to go to bed because he couldn’t stand up.
Initially, he was seen twice a week with manual adjustments, laser therapy, ultra sound therapy, electric stimulation, massage and muscle manipulation, at home thera-band exercises. Now he’s at once a week, doing easy adjustments, and he experiences very little neck tension anymore.
About 3 months into the new diet, we introduced two supplements: magnesium and riboflavin. The American diet typically does not provide enough magnesium on a daily basis through food that healthy people need. And for those with vestibular and/or brain conditions, this deficiency has a magnified affect. James takes magnesium twice daily, its twice the usual dose and he has noticed significant relief from his headaches, his vertigo has lessened as has the tinnitus, less brain fog and his overall mood has improved. He also noticed that when he doesn’t take the magnesium, he feels off and his sleep is affected. So that tells him that he is seeing benefit from it. And based on what I’ve been able to research about magnesium and brain function, we are on the right track.
Two months ago, we got him a gym membership. He began very slowly to build up his body. He had atrophied greatly. At 6’6″ he was around 160 lbs — very, very thin at the start. He is now going almost daily, has put almost ten pounds back on, and is much happier than I’ve seen him in years. He still has his bouts with his condition, especially if he doesn’t get proper rest or some stress gets to him. Stress with folks that have his condition is the worst! It’s the one thing that will ruin his day so we are constantly working on that….how best to mitigate stress and how he can effectively manage it when it does happen.
So that’s our story and we’re sticking to it…. 🙂
We are without a doubt a work in progress! And we aren’t at the bottom of the rabbit hole anymore.
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