Vestibular Migraine and Me: Part 2

brown teddy bear resting in bed

I can write this with more clarity than the first post because, thankfully, things have subsided. The complete episode is not done, but the disorientation has calmed down. Another plus is that I have been able to get back to work after four and half months. I owe that to Vestibular Therapy.

This migraine was like nothing that I have ever experienced before. I think I mentioned that I am not a stranger to the old migraine. I have been on multiple classes of medications for them, but nothing has really been effective, except Ubrelvy. To its credit, it worked for my normal migraines. HOWEVER, I will never take more than one pill per episode because the second one will have me feeling like the undead. I can't sleep but getting up and walking around is not advised. Everything is in slow motion and my ability to process information is next to impossible. Lately, the headaches have been different. The last one at the end of 2024 turned out to be increased cerebral spinal fluid and it caused increased intercranial hypertension. This time, it turned out to be a Vestibular Migraine. The issue with VM is that it doesn't really come with pain. It's more vertigo, nausea and balance issues. If I had to list all my symptoms, I would say, "...and oh yeah...a mild headache...sometimes".

This experience was the first time since this all started in 2009, that I have felt so helpless. I try very hard to avoid unnecessary medication usage because of possible interactions as the list continues to grow. However, in this case, I begged for something to give me relief! The typical recovery tactics that I learned with POTS did not apply. My blood pressure never changed, my heart rate stayed the same and laying down only enhanced the vertigo. Nothing helped. Once I started to use my eyes for anything at all, the vertigo was triggered and the nausea followed and cue the internal tremors! They are exactly as it sounds. On the outside I look like I am just still. There is no indication, whatsoever, that I am experiencing any form of discomfort, besides the clenched fists and the eyes forced shut. On the inside, everything is vibrating as if my whole body is on a roller coaster. Just like I feel the entire room spinning during a vertigo episode, but it's not. There is nothing that could stop it. I just needed it to subside with my eyes shut and my body still, but it could take 2-3 hours to taper off. I was often find myself in tears until I would drift off into sleep. Once I would wake up again and I started looking around, the tremors would reappear. This went on for weeks. The POTS Nurse Practitioner directed me to the Rheumatologist who told me that I am already on Ivabradine and that there was nothing else to take. I was devastated. I was also told by my regular Neurologist and Vestibular Therapist that there wasn't anything that I could take to help with the VM because the medications would just prolong the episode. That was discouraging the hear. I felt abandoned and I started to spiral a bit. There was no option to truly give up but with something so oppressive and no kill switch available, I was out of options.

With all of my medication options dashed, I armed myself with the two things that I still had access to: prayer and information. I still had the capacity to pray even with the noise that occupied my daily waking existence. I could temporarily subdue the ruckus and find a calm in midst of it all. It allowed me to gain strength to just go on another day. I know that it can sound a bit dramatic, but I was facing something that came on so abrupt, was invasive and overwhelming. I did not know which way to turn. In the back of my head, I remembered what my Vestibular Therapist told me. She said that none of this was going to get better unless I put in the work. Stubborn old me went ahead and did some research and I found that she and the Neurologist were both correct. The only way to rid myself of this plague (yes drama) was to put in the work.

But one of my major flaws is follow through. I can start something but seeing it to the end can be a challenge. Having this crippling fatigue makes it worse but it means that I have to show up for myself even more. Without option of being rescued by medication, I had to dig in. Cue the Eye of Tiger🥊🐯. No raw eggs, running the stairs or crunches required. My way through this vestibular episode was to plainly live my life. This is not an oversimplification of what I did. I literally needed to get up every day and perform activities of daily living (ADL) which was the exact opposite of what I wanted to do. I would have preferred to have buried myself under the sheets until this whole wretched thing was over. But in order to actually heal I needed to use my eyes, move around as much as I could and go about my day, as usual, before the migraine started. It was explained that there was a disconnect between my brain and the rest of my body and performing these basic tasks would get them back in line with each other. This coupled with the balance and gaze exercises, would repair the relationship between my brain, eyes and feet to get me back on track.

At the time, I didn't really have much hope. My abilities were no longer stellar since POTS came along but the VM made things so much worse. What other option did I have? So, each day I got up with the purpose of looking after myself until the vertigo took over. I would wash face, brush my teeth, get dressed then go try to make something to eat. Or just eat what my mom made if I couldn't stand lng enough to cook. I tried to hold conversation and to assimilate back into my own life until the vertigo forced me back my bed, under the covers with the curtains drawn. When the internal tremors subsided, I would fall into a deep sleep from pure exhaustion for maybe 3 hours. Then act 2 would begin. I would get up and go downstairs again, engage the family, talk and eat. I would be a bit refreshed due to the nap, but the vertigo wasn't far behind. This time when I went to bed, it was for the night and I would rest, or try to, until it began again. The only break in the routine was my weekly visit for the Vestibular Therapist. She would reinforce what I was doing at home, reassess when needed and gave me more challenges to help me progress back to my old normal. Let me not forget the encouragement. She helped me celebrate the small victories and let me know that I was doing a great job. I felt lousy. I was trapped in a body that didn't listen to me anymore. I couldn't trust my steps or my eyes.

It took me three months to get in to see the specialized specialist, which was the Vestibular Neurologist. Yes, I have a regular Neurologist, who is a specialist and then an even specialized Neurologist, that treated Vestibular Migraines. Lucky me. One of the best things about this appointment was that I didn't have to start from scratch because this was the same doctor that saw me in the hospital with this first started. He was the one that suggested Vestibular Migraine initially, so it took away the weight of having to give him the whole lore of this episode. He was very thorough in explaining everything to me and I was fortunate to have had an awesome Therapist who provided not only care, but education so I wasn't completely unaware of what to expect. A week before the appointment, I had a Vestibular Test and it revealed the same info that I had already learned from my VT. I did learn that the Vestibular System trips the Autonomic System and that is what causes the vertigo and the nausea! That happens to everyone who experiences VM. Unfortunately, for me, I have a dysfunctional Autonomic System so when it agitated by the Vestibular System, it just keeps going. That explained the internal tremors and why this episode was lasting so long! I explained, in detail, why this is troublesome for someone with POTS and the familiar look of empathy came over the doctor's face. Though he didn't specialize in autonomic systems, he was well aware of the connection and issues that I face versus someone with a functioning ANS. Difficult but not impossible. This should surely be my motto. The doctor put me on Nurtec and encouraged me to continue VT. I did until I fell down the stairs at home and broke my toe... No, I am not making a post about it, but things happen...right...right.

I don't like the nurtec but I have to take for another month before I can try a different medication. The doctor mentioned a shot, I think...No more pesky vertigo but more headaches in general. I have my balance back and feel like my usual POTS-ridden self. If anything interesting occurs in this Vestibular Saga, I'll update you.

Until we meet again 🩵