I watched the vertigo and dizziness lecture on the Migraine Summit. (I believe you can still watch this particular one today but it will be closing soon as they only stay open a day after) And it was fascinating.
After listening to it I can be fairly certain this issue I have is vestibular migraine because it can move from intermittent to constant. Basically always having a migraine literally all the time but it varies in symptoms… since I also get migraine headaches. And it did go through some other typical vertigo conditions and how they make a distinction. Yes, I may also have an issue with my left ear but definitely, I have a serious constant vestibular migraine issue. And I sort of found it depressing because apparently it can get like this and there is no easy answer for treatment. And I had hoped it was just an ear virus that could be corrected with physical vestibular therapy. And the meds mentioned I have tried for the intermittent vestibular migraines I have had for years and they did nothing for me. So it does worry me that I will be stuck like this for the long haul. And it is debilitating functionality wise. So I do not want to be stuck in it forever.
He did also say with vestibular migraine we are extremely motion sensitive. And it is this sensitivity that makes the symptoms worse as the day goes on… any head movement and the fatigue all make it worse. Which explains why I get worse as I go through the day and why I need to rest after doing anything and why moving around instead of laying down really aggravates me.
But it also gave me ideas. And I am always one for a game plan. Hope for the best, prepare for the worst.
So what to do? Well, there are things I am going to try.
Game Plan 1
He referenced this study:
Vestibular migraine and CDUE (dizziness of undetermined etiology) were considered contributing factors to dizziness in 34 and 10, respectively, of 156 patients. Fourteen percent of patients reported improvement in symptoms upon caffeine cessation, whereas 46% of patients reported a reduction in dizziness after nortriptyline therapy (P = .007). Topiramate reduced symptoms in 25% of patients. In total, 75% of VM patients and 56% of patients with CDUE received sufficient benefit from this therapeutic pathway to not progress to other treatments.
Vestibular migraine and CDUE can be treated effectively with a therapeutic pathway consisting of caffeine cessation followed by pharmacotherapy. Study
Now the medications will not help me… been there, done that, more than once and even in combo. But I have not tried caffeine cessation since the vestibular migraine started. So that is Game Plan 1. This will not be fun since I am entirely and absolutely addicted to diet coke and caffeine… because I am constantly exhausted. But it will be done. Yes, it will be done. And I will not enjoy it at all but there you go: the things we do for our migraines. And our health. All those things regular people do not have to do because of that whole healthy business. But whatever. I’d eat pickles for the rest of my life day after day forever if it would help with this relentless vestibular issue.
Game Plan 2
He addressed CGRP medications for vestibular migraine in the video. And it can work. And it also sometimes doesn’t. It depends on genetics. But I will be trying it because I anticipate or Hope for a response for my migraine with aura… and if it helped with this vestibular migraine then that would be so awesome. So that is definitely a step I will be taking. In fact, the vestibular clinic wants me to try it anyway. I have to say I have no options in regards to CGRP meds, because only Aimovig has been approved in Canada so far. If it really helps with my migraine with aura but Not the vestibular migraine, then I will then try the typical vestibular migraine preventatives again… because they may make it somewhat more tolerable now that it is a constant issue.
Game Plan 3
So I have TMJ and this last while it has been quite painful. For a long time, I blamed that jaw pain on migraines… when it might be the reverse. The TMJ may be triggered migraines. Also of note is that TMJ can cause vertigo. So I have a dentist appointment to be fitted with one of those TMJ teeth thingamajigs which the dentist said I could and should wear for at least part of the day as well as at night to help the issue. I just thought, hey, let’s just tackle this issue while I am at it because if anything it will help the incessant jaw pain. It can’t hurt.
So you know there are always options. I have had more than one neuro give up on me for my chronic migraine with aura because I just do not respond to preventative medications. And not even really to botox. So they just shuffle you off to someone else. And that really can hurt. It does make you feel hopeless. But when I am down, I just get damn well back up again with a new plan of action. Maybe I will never be able to work again or maybe I might in the future part-time… and I am fine with that at this point. I understand this is a complex issue complicated by other health issues like fibromyalgia. But I will not give up on just a little bit better in my quality of life.
Now, of course, I still have some vestibular tests to do because of the abnormal ear results and that could complicate things. Vestibular rehabilitation makes vestibular migraines much worse and in the video, he said it was like torture. So that is out. Unless I have this ear issue… in which case, it is back in but the video said in these cases it is very, very slow… like minutes of treatment. So we will see how those tests go.
I will also be trying to exercise… but at this point in the game that is a very difficult feat so it will be slow walks around the block until I get some handle on the vertigo. I have also been taking my magnesium and B complex vitamins religiously. And I reduced meds. Went off of painkillers, which was a real joy. So really back to basics and baseline pain. So at the very least, I will be able to tell if new meds are doing anything at all.
See other posts:
Aimovig for migraine
Vestibular clinic adventure
VNG vertigo test