The “H” word. Hope is sort of a double edged sword for me, like it is for so many others, I’m sure. In the last decade of being sick, we estimate I’ve seen about 35 Doctors and Specialists, received countless diagnoses, tried too many medications to count, all with the initial promise that they were confident they could get to the bottom of it and fix it. Or at least, if not fix it, improve it. The stark alternative reality to those promises has been anything but: incorrect diagnoses, horrendous(and sometimes terrifying) medication side effects, being passed off when my case became too complicated or the provider had reached the end of their helpful rope. And so, hope is no longer a word I hold with much reverence in my heart. Instead, it’s been one failed promise of help or relief, after another, with a big fat dose of disappointment, instead.
So in 2020, I gave myself permission to stop looking, stop hoping and instead focus on living in the confines of this constant illness life. I was going through whether or not a tumor was cancerous, a repeatedly canceled wedding, the devastating work injuries of my Eldest Son and all of the other bliss we have all experienced with the year 2020.
Except, after the August wedding, I never was able to get back up again. For the most part, I have been couchbound every day since. Battling not only the pain, fatigue and brain fog of Fibromyalgia and Chronic Fatigue Syndrome, but also, never ending migraines, bouts of nausea, dizziness and light headedness. For good measure, add in some horrendous motion sickness, which makes leaving the house, on those infrequent good days, a daunting and unwanted task.
With the help of my Primary Care, we tried an extended Prednisone blast, to no avail, until it finally came time to face the dreaded reality that I needed to find a new Neurologist, after breaking up with my old one. Once again, an exhausting consideration, especially given I have yet to find one I’ve truly liked or thought effective. Amongst the consideration for the new Neuro, came the forced realization that I cannot continuously use rescue meds and then merely survive the five other days of the week I can’t use them. Which means, more drugs. Again.
And as much as I desperately didn’t want to do the new Doc interviews again, I more desperately didn’t want to start yet another migraine drug and experience all the glory of their subhuman side effects. Except, in the midst of all this stubborness and refusal to face the reality of what I needed to do, one thing had been becoming increasingly clear:
I was getting depressed and the near constant time spent on the couch; day after day, week after week, was beginning to extinguish my inner resolve. And while I may not have hope for a cure, I always carry hope in life; at least I always used to.
As things usually go, as I was looking for Neurologists and considering whether or not trekking to Boston might finally be in order, I stumbled across a term I’d never heard before: Vestibular Migraine. Now, in the decade I’ve been suffering, I have been diagnosed with Chronic Migraines, Basilar Migraines, Migraines with Aura and Migraines without Aura. But never once, not even amongst four different Neurologists, across four different hospitals, had the term Vestibular Migraines been mentioned. So you can probably imagine my surprise.
So what, exactly, is a Vestibular Migraine and why does it matter if I already knew I had Migraines? Because Vestibular Migraines are a type of migraine that predominantly manifest with vertigo and dizziness, while headaches may or may not occur. They can also be accompanied by nausea. It was like hitting all the topics on my list that have been leaving me couch ridden for months. And for the icing on the cake, I posted on Twitter asking if anyone confirmed to have Vestibular Migraine suffered with ferocious motion sickness, what do you know? YES.
It was like when Clarence’s Angel bell rings in It’s a Wonderful Life. All of a sudden, my search for a new Neurologist had importance. If, in fact, my non clinical expertise was right, could it be possible that some of my most disabling symptoms had nothing to do with Gastro issues at all? Could it be that somehow, someone may finally be able to help with the constant and severely disabling dizzy/nausea spells? Even on days that I am up, leaving the house had become such a miserably arduous task due to the motion sickness. It’s a miracle to get anywhere and back without getting ferociously ill, but even if I manage that, I’m down the rest of the day. For once, pain and fatigue have not been my biggest nemesis. Instead, it’s the world constantly spinning and the need to constantly hang my head in the toilet, that has been ruining life (for now).
As I started to dig a little more, I found out the expert I actually needed was called a NeuroOtologist and/or a NeuroOpthamologist. Not a standard Neurologist anymore. And while I wouldn’t actually call myself lucky, I was lucky enough, this time, to find one, thanks to our CPP Twitter Community!
Trying to adequately prepare (in my mind) for this appointment was a huge undertaking. I had seen Cardiologists, ENTs, Neurologists and Opthamologists and had countless tests and visits to coordinate. In order for me to get a diagnosis, if VB is actually what this is, it would require him having all the necessary info for my appointment. And as much as I had thought I didn’t have enough on hand, I actually did, without having to go too crazy with chasing down records.
I don’t normally get emotional in the lead up to see a new Doctor, but this time, I was a mess. I was super stressed and overwhelmed with emotion. What if it IS Vestibular Migraine and we finally know that alot of what I live with is connected AND moreover, that someone can actually help. Conversely, I was equally overwhelmed with being sent away again with a glum, “I don’t see anything”, “you need more testing” or “there’s nothing I can do”.
Instead, what I actually got was a lengthy appointment with a Doctor who immediately impressed both my Husband and I (not an easy feat), in which he actually led me and the entire line of questioning. I think it was actually one of the easiest Doctor appointments I’ve ever had. And as we sat there talking and answering all the questions, SO many things were being organically answered as we went.
Like that Vertigo doesn’t only mean the room is spinning……did you guys know that? We were astonished to learn that Vertigo is actually the illusion of motion. And it doesn’t necessarily mean spinning. It can actually be a variety of symptoms like rocking, swaying, swimming or floating…..A couple of good examples of this are when I’m watching tv and the characters are moving too fast or when I accidentally scroll through emails too fast.
We touched upon a symptom I thought I could never properly articulate: when I get to the bottom of the stairs in my house, I can’t see the last two stairs sometimes. I’m pretty sure there’s two or perhaps three stairs left to step down, but I can’t actually see them to determine if that’s true. To my utter shock, he actually called it “Alice in Wonderland Syndrome”. And having a name to assign to something that I thought may instead garner eye rolls, brought me to tears.
It wasn’t only that, either. It was my issues with falling over when standing…..my Husband always makes sure to say that I don’t actually fall, but instead, misstep and have to catch myself. Even when I’m standing perfectly still. Or trying to walk through a walk-through in our house…..I see it, I know I’m in the center of it when I begin to walk through it. Instead, half of my body walks in to the wall. It’s not being able to drive anymore because my depth perception and spatial awareness are totally off. I can look at the white lines of a parking space, think I’m pulling into them perfectly and wind up nowhere near within them. It was the beyond terrifying and sudden complete loss of vision, to total blurriness, that lasted for hours.
And he attributed ALL these things to Vestibular Migraines.
Funny enough, we even talked about how sick I get when I shower, which I previously wrote a post on, here: https://fightingwithfibro.com/2019/09/27/sick-from-showering-with-fibro-this-might-be-why/ He actually explained that dizziness and vertigo can be brought on simply from moving the hair follicles too quickly.
And as hard as I had tried and was determined not to, I broke down in tears. It was the first time in a LONG time that I have had my symptoms validated and what’s more, he said that he has tremendous success with treating his patients and many restore to full health. With my other illnesses, this obviously isn’t possible for me, but I will happily take just a 20% improvement and the elimination of these super crippling nausea/lightheaded/dizzy/vertigo spells.
So just like that, after four years (with the dizzy spells, nausea and vertigo), I had a confirmed diagnosis: Vestibular Migraine and more importantly, he designed a roadmap for how to start on a path he feels might actually make a difference.
So now, as I share his advice, please remember I am NOT a health care professional and I am not equipped to provide any medical advice. I would always advise anyone to seek professional care and to talk to their Doctors about anything pertaining to one’s personal health.
Dr. Beh started out with something simple, like asking my Doctor to check my B12 levels-which incidentally, are always normal. And then advised seeing a NeuroMusculur Specialist for what is suspected Neuropathy. We were kind of in awe, that after living with Fibro and CFS, for nearly a decade, no Doctor had ever even suggested such a Specialist existed. Funny enough, he said that the “electricity like pain” that I described to him, five of his VB patients also describe, but that it could also just be the Fibro or small fiber Neuropathy. Which Neuro-Musculur Specialists are really well qualified to diagnose.
Then, what he suggested totally shocked me. He wants to try a three month regimen of using supplements and trying to eliminate any triggers before we consider pharmaceuticals, which I always struggle with. WOW!! A Doctor actually saying let’s try other things before drugs? I could have hugged him, if I could. So here’s what we’re doing:
- Upping the Clonazepam dose I already take by double. The purpose of this is to try to lower the sensitivity of my nervous system so that the supplements might work, never mind, that my nervous system is tuned WAY too tight.
- Adding L-Tryptophan at bedtime, you know the stuff that’s in turkey, that makes everyone sleepy on Thanksgiving? Adding that, once again, to knock me out and allow me to sleep. But more importantly to shut off my nervous system while doing so.
- Then taking the following supplements:
- Magnesium Gluconate, though I could only find Magnesium Glycinate, which he said is fine
- Magnesium L-Threonate, which is reported to help with brain fog and fatigue. Which, oh my gawd, I forgot to mention that brain fog, cognitive issues, word finding issues AND fatigue can all be associated with VB!!
- Vitamin B2
- And last, but VERY much not least, he told me to take Vitamin E starting 2 days before getting my period and for a total of 6 days to hopefully prevent me from being bedridden, as I normally am
He asked me to give it and him, three months to see if we could improve things. While also eliminating chocolate and coffee (big huge tears here). During that time, he gave me a list of medications to research, so that I could choose which migraine preventative drug to try first; if the sleep, dietary changes and supplements don’t work.
But of most importance and I may cry again……..he told me to have hope. He said that we are not in a sprint, but instead, running a marathon and that it might take time to get any better. But that if I am willing to work with him and willing to try some of the meds (again), if needed, that he thinks he can improve things.
I cannot tell you the last time I had any hope of getting better, but I will say, Dr. Beh instilled the confidence in me to totally try and to believe in his ability to help. And just that is a beautiful thing to hold on to.
I met with Dr. Beh two weeks ago and for whatever reason, I have been struggling to write this post ever since. But in that time frame, I immediately got all the supplements he recommended, increased my Clonazepam, had my B12 levels checked (normal) and gave up coffee. I also have been trying to behave myself with chocolate. Which incidentally, I lost my resolve last night and ate a protein bar with chocolate in it. What would you know, within five minutes of eating it, I was dizzy, nauseous and struggling with vertigo. I guess I now have to face that chocolate is a trigger.
Aside from watching what I eat for trigger identification and eliminating caffeine and chocolate, Dr. Beh did not recommend any crazy diet. Although, admittedly, I’ve tried all of them (for three months each), trying to find relief from my Fibro or other symptoms and never saw any improvement of any kind. So while we didn’t focus on establishing a new diet, we did focus on making sure I’m aware of any foods that trigger me: I already knew that wine and MSG were triggers. Now we know to add chocolate to that list.
He also suggested a Cefaly device, which is similar to a TENS unit, though specific for migraines and used on the head. While they’re certainly pricey, I would have tried one, except I found a TENS unit I purchased to be utter torture. So we eliminated that as an option.
Of my own accord, I bought and have been using a Koldtec Halo, which is basically a headband with velcro that you can slide reusable ice packs into. Since I can only use two doses of Fioricet (a migraine rescue drug) a week, this has been helpful to get me through the other five days a week I get migraines. I also continue to use an Essential Oil blend from Young Living, called MGrain, which I find tremendously helpful too.
As I was searching for my supplements, it popped up that my new favorite Doctor wrote a book on Vestibular Migraines, which he never even mentioned during our visit (how cool, he was THAT focused on me) . Of course, I immediately purchased it and found an even bigger wealth of information in that!! You can find his book on Amazon here: https://www.amazon.com/Victory-Over-Vestibular-Migraine-Healing/dp/B08C92JB3R/ref=sr_1_2?crid=1JJ410NMZXHGE&dchild=1&keywords=vestibular+migraine&qid=1605218151&rnid=2941120011&s=books&sprefix=vestibular%2Caps%2C186&sr=1-2
One of the things I already love about his book is how he mentions that Essential Oils can help with some symptoms, like motion sickness. You know me and my Essential Oils!!! I immediately made the blend recommended in his book, comprised of Rose, Eucalyptus, Ginger and Lavender. I’ll be giving that blend a good hearted try when we make the hour + trip to see my Parents this weekend. Which is normally a miserable excursion, besides getting to see my Parents and Aunt Helen. Of also equal importance, one of his other suggestions was to take Vitamin C and Ginger, one hour prior to leaving, to also hopefully ward off the motion sickness. I’ll let you know how, or if, it all works!
Overall, I can’t say I’m better or cured. I can’t even say that I’m not still getting near constant migraines. BUT, what I can say is that I have FINALLY had some “up” days, when I wasn’t relegated to the couch for the nausea/dizzy/vertigo spells. I’m tired as Hell from the increase in Clonazepam and taking the L-Triptophan and tea is NO replacement for coffee; which I desperately miss. I’m also extremely grateful that peanut butter is my “can’t live without thing”, which will now need to take the place of chocolate.
But most importantly, I have a gleam of hope in my life, that I had really been struggling without, in the last two months and I finally feel like I have a Neurologist who is actually invested in helping me get better.
And as we all know, here, sometimes, hope and a hand to hold on to are all it takes.
Much Love, Stace <3