2018 – Year of the Vestibular Migraine #ChronicLife

Vertigo has been a mainstay in my catalogue of symptoms for about 6 years now. Up until last November, I could only ever describe it to my neurologist as something that happens when I look down too long, and it was always coupled with neck pain. It would get worse in the summertime, and I would have to wear a soft neck brace to get relief, and also as a reminder to not look down. I really hated wearing that thing, especially when the weather was hot. While it relieved some of the vertigo, prolonged use would tend to give me a tension headache, so I’d have to make sure I was wearing it for short periods. Car rides, especially stop-and-go traffic could aggravate the neck pain and vertigo, which seemingly go together. Apart from some limited range of motion, my neck x-rays have not shown anything abnormal.

It was quite debilitating at times, and I kept bringing it up to doctors, only to have it blown off. I had some testing in 2014 called an electronystagmogram for inner ear problems which came back “normal”. They spun me around, poured water in my ears, made me watch red laser dots that spin around. They did their best to make me sick, and it didn’t. Not at that point in my vertigo adventures, anyway.

The pattern of my vertigo flares became fairly consistent. It seemed like I would get a bit of a break from it when the weather got cooler. I didn’t seem to need the neck brace as much, sometimes not at all. Usually between December-March it would lay low for a while. Then the weather would start heating up, and by June it would become a daily problem again. The neck pain never subsided though, so there would still be days where I needed the neck brace.

Not being able to look down without getting vertigo and neck pain has been a huge problem for me. I’m an artist, and I have to look down at my work. I can’t read books. I can’t get comfortable, there is no suitable reading position for me. If you think of all the activities that require looking down at something, even slightly down, you might realize what a hassle this can be.

Things like Drammamine and similar drugs never helped me. They just made me tired. So I just did what I could with the neck brace, and figuring out different ways to do art or read or work on music.

This was the extent of the vertigo up until November of 2017. Then something happened to me one night and I haven’t been the same since.

In the middle of October 2017, I got the flu shot. The rheumatologist gave me the extra-strength formula that they give to the elderly and the immunocompromised. I’ve received the flu shot in previous years, but I don’t believe I’ve ever had that strength before. I can’t be sure how relevant the flu shot is to the story, but I just wanted to make sure I mentioned it. I do remember having a day not too long after receiving the shot where I randomly vomited once.

I had a night in November of last year that was very strange. I can’t really recall how I was feeling before it happened. Sometime after eating dinner, I suddenly had the worst heart palpitations. I was terribly uncomfortable. I was sitting in my usual rocking chair (at the time, that was all that my body would tolerate as far as furniture goes) and I suddenly felt weak all over. I couldn’t stand up. I had this really bad pain in the back of my head, unlike anything I’ve felt before. It became really hard for me to explain what was happening. The vertigo hit me really hard. Everything in my right eye went dull and grey. I was really lightheaded and shaky. The “motion” feeling of the vertigo was really intense. My mom checked me for stroke signs, which I had none. It started to subside after about 2 hours.

I don’t really remember how I felt the next day. I guess it’s all blurred together now. But I do remember starting to notice certain things would set this type of episode in motion again. Salty food, caffeine, and the most difficult thing, being upright.

Being upright, like sitting in a chair or standing for any length of time would cause the pain in the back of my head to start. Then the other symptoms would follow. Shaking, chills, vertigo, lightheadedness, and the sudden need to vomit if I didn’t immediately change my position.

“Oh god I can’t sit here” became a frequently-used phrase.

This new “syndrome” brought me to my knees. I was stuck on the couch, on my side, because that was the only thing that seemingly didn’t bring on these episodes. I still attempted to continue doing regular activities. But they made me sick almost immediately. Showering was really hard, sitting or standing.

Because I was so limited in the positions I was able to be in, and the activities I was able to do, this put my stomach and GI tract in flares. I have gastroparesis, so my stomach does not empty at a normal rate, it is very slow. And I also have a hiatal hernia which causes my lower esophageal sphincter to be partially open all the time. Basically, food can go backwards, and without the help of gravity and activity, it gets much worse. So I was feeling like I had partially digested food in my esophagus every time I ate. Liquids also caused me to have the same problem. Sometimes liquids even made it worse.

After the first episode, I went in to my neurologist with my mom to explain it, and it got blown off as a migraine. He is a stubborn asshole sometimes, but I stick with him because he knows more than any doctor I’ve ever met, and he was the one that got to the bottom of my brain vasculitis. For all I know, he saved me from having a stroke.

After getting blown off, I dealt with the episodes for a while, while my mom and I tried to figure out what helped, and what triggered the episodes. I stayed away from doctors and hospitals for a bit because a flu was going around that was killing otherwise healthy people. I wore a vog mask everywhere I went. I was terrified of everything at that point. The vertigo, the flu, and whatever my body was doing.

I remember watching the winter olympics and just being totally consumed by head pain and the other symptoms. It always became worse later in the day, and by bedtime it was intolerable, which is why it was bedtime.

At this point, these “episodes” caused a variety of weird symptoms. They don’t sound like symptoms that go together, but I knew they did, they would all happen at the same time and I could just feel it.

  • searing pain in the back of the head
  • nausea (vomiting if I didn’t move my ass)
  • weakness – overall body weakness and my knees buckling
  • shivering, even if I wasn’t cold (enough to make my muscles sore)
  • chills
  • confusion
  • memory loss
  • sensitivity to lights and sounds
  • vision problems – things getting ‘greyed out’ and spotty

All of this was brought on by my body being upright, or having salt or caffeine, which I would imagine is related to blood pressure and posture.

One of the things I began to realize is that the xanax I took occasionally for anxiety helped my symptoms, and not just a little. It helped a lot.

My next trip to the neurologist was finally fruitful, in fucking APRIL. It took that dinosaur til April to come up with a diagnosis of Vestibular Migraine. (Side note: we have the kind of doctor/patient relationship where I could call him a dinosaur) It was actually a great appointment, too. He asked me outright, without me having to hint, if the xanax helped my symptoms. When I said it did, he recommended Klonopin, which has a longer half-life. I started on 0.5mg. He also mentioned a doctor somewhere in the bowels of Los Angeles that uses Effexor to treat vestibular migraines, but after hearing about having to open capsules and count pellets, my mom and I decided to just ask my GP about it.

Klonopin has anti-vertigo properties and is often used as an off-label treatment for vestibular syndromes, including vestibular migraines. When I started taking it I definitely noticed a difference right away. It wasn’t an “I’ve got my life back” difference, but I felt like there was finally a light at the end of the tunnel. I was able to do some things again, in moderation. I could sit a little, stand a little, eat a little salt. I didn’t feel like I was suddenly going to projectile vomit if I stood or turned my head a certain way. I felt so hopeful. But I still needed more relief in order to get back to where I was before all this came about.

I started the Effexor in May, per my GP. I think. Somewhere around there. I started at the typical dose, 37.5mg. Over the next few months, I worked my way up to 150mg, but it wasn’t easy to do. It was terrible on my stomach. There were a few days after I titrated up where all I could eat were Jell-o and some other geriatric nonsense. Also, oddly enough, it seemed to be giving me more headaches. There was no improvement in the other symptoms. It made me a zombie. I couldn’t work on art or music all summer, which was also in part due to flaring from the heat. But the Effexor made me feel like I couldn’t stay awake during the day. I also experienced more depression at night, much worse than what I typically deal with. I felt like it also affected my judgement, I hung on to a toxic friendship for a lot longer than I think I would have had I not been on Effexor. It’s hard to know for sure, but I really felt like this was the case.

My mom, my GP and I decided it was a good idea to wean off, since the three of us couldn’t see any benefit at all from it. For a few weeks I kept cutting the dose by 37.5mg, until I was completely off. I should mention that I didn’t spend much time on the full 150mg dose. The headaches from it were too much. By the middle of October I was completely off Effexor. I did experience the withdrawal effects. I had mood swings and depression in the evening, and crying spells. I am oddly thankful for the crying spells though, it’s been a nice release, and I can’t give Effexor 100% credit for them. I think I needed to let some shit out, too. Sometimes I feel like I can’t cry even though I want to. I guess I am a bit guarded with crying considering it gives me migraines. But crying needs to happen and I’m thankful when it does. Weird, I know.

While weaning off the Effexor, another visit to the neurologist prompted an increase in the dosage of the klonopin. I now take 0.5mg twice a day. It has definitely made me feel more functional. I am not without vestibular migraine flares. In fact, I am in one right now and I am not sure why, but there could be a lot of factors, from lupus flares, to stress, to the environment. But the important thing is I no longer feel afraid of them. I know what they are, why they happen, and a few things I can do when they happen. I am not without frustration when I flare, but I am able to handle it now, physically and mentally. I went through a lot of emotions before these “episodes” had a diagnosis, but the biggest one was fear. I was so afraid of them. I felt like I lost total control of my body. I no longer feel that way. I feel at least partially in control, which has been a beacon of hope. It’s been a long recovery, and I don’t know if vestibular migraines are a “forever” disease. Maybe someday it will burn itself out. I’ll be crossing my fingers, but in the mean time I will just keep pushing forward.