#vestibular hypofunction | Explore Tumblr posts and blogs

lluxoperon · 4 months ago

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You don’t realize how much you depend on balance until you don’t have it

Ok here goes, this is a long one and a bit personal. I’m hoping that’s by sharing this, it may help someone experiencing something similar. Full disclosure here - I’m not going to even attempt to pretend to apologize for any language, because sometimes nothing better fits or gets the message across as poignant or elegant as a well placed sentence enhancer.

Simply put, chronic and/or long term health things suck ass. Serious donkey balls sucks. Serious. Like… Fuck. That. Shit. Sucks. Especially when you spend a months (or longer) not knowing what the actual fuck is going on with yourself or a loved one. It also sucks much less when you have people in your life that genuinely give a few of their own precious fucks in their life to you to help you get through it all, when your fucks to give are coming up short to a complete lack thereof.

I’ve been down a really shitty road of a long term thing once before when it took an agonizingly long 6+ years to diagnose my cluster headaches at a time they weren't really understood by anyone in the medical industry, let alone common people. The amount of “just fucking relax, it’s only anxiety” I heard that time from literally EVERYONE (including my past SO's) around me at the time was outright maddening. “Yea I fucking have anxiety because all you fuckers either don’t care, think I’m faking this shit, or you can’t figure this shit out because you suck or never heard of this”. The lack of a good support system is not helpful as best, damaging at worst. And if I am being honest, I kind of expected that again from my past experiences. However, this time around, it's been night and day compared to before. I’m not being made to feel crazy, and it's quite a breath of fresh air. My wife, Niki, has been all kinds of helpful and supportive. I write all this as much for her as myself, she's been deep in it with me right from the start.

So to the present... Some of you online have noticed I haven't been posting a lot of my photography for quite some time. Some of you that have seen me in person recently may have noticed I’m using a cane lately, and/or noticed I haven’t been my usual jet-setting self as much I usually am. International travel stopped completely after Nürnberg in Feb 2023. Some people asked about it, some have been polite and just nodded and not asked. Some have ignored it altogether, as I know some aren’t comfortable talking about personal stuff, either their own or other people's. I appreciate however you feel about it, but full open kimono, I’m not embarrassed about it, nor do I mind talking about it, it just is what it is. It's a crazy story, and I often forget details when I am rambling (why I'm writing this in the first place). I guess talking about it also is in my best interest if anyone else has even heard of someone dealing with this. Trying to figure out what it is has been an ordeal, mostly because it's so uncommon, but I’m not giving the fuck up. My brain won’t let me stop trying to figure it out, but some of this all is still in flux.

After getting back from Nürnberg, I started having a weird ear thing, where I was noticing a weird warble effect in my right ear, basically like an echo or reverb. I have gotten this actually quite often over the years, as I had bad ear infections when I was a kid, and it’s also something that just happens with my cluster headaches, or allergies. No big thing, whatever. However, one day after doing some work on our backyard, breaking up concrete, I put my finger in my ear to get some concrete dust out, and I fell backwards onto the kitchen counter. Whoa. Vertigo. What was that?!? Ok... that’s weird. I go to take a shower and as I get to clean out my ear and my eyes start shifting uncontrollably left and right. Wait, what?!? No fucking way. What?!? Ugh. That doesn’t feel great, it also makes my head spin. Ok yea, don’t do THAT anymore. "Niki come look!" Yea, weird... Ok. Put that out of my head. Let’s see if it goes away. It does a bit, but my head is still all wobbly for days and weeks, but maybe I'm just super tired. I mean we were going all out on working outside in our backyard to get 'er done before summer hits in typical Vegas fashion. I get a referral from my GP for an ENT. I find one local to Vegas, they do not return my calls. Typical for here, so yea... A couple months go by...

I fly to LA in April for some tattoo work, all is ok. Over the next week, I have industry conventions to go to on the Strip, all is ok. I'm starting to wear my mask a little less around people, no big thing. All good, tired, but good. A few people come over, I play some Beat Saber with them, I get a little nauseous and dizzy playing, but I figure I'm a bit over exhausted from being on the Strip all week, work, travel to LA, meetings back to back, and house work. The finger in the eye still produces the weird eye thing (it's called nystagmus I find). Still no big deal, right? The fates are laughing in your general direction... Enter one of the largest wind storms we've seen to date in Vegas. My allergies now are through the roof. I get yearly hay fever, so not surprised at all. I start up the Allegra I take each year for my allergies. We go out drinking with friends on the Strip, we all eat too much, drink too much. Back home, in middle of the night, I get up to pee, and as normal, I don't turn on the light in our WC. I'm not barely even drunk any more at this point. I turn around to go back to bed and next thing I know I am splat out on the floor, I don't even know how I fell, or even remember falling. Somehow I ripped off the TP holder on the way down, I'm confused and tired. Niki helps me get back to bed. I'm REALLY confused at this point, and a bit more dizzy than I have been in weeks.

Two days later, I fly back out to LA for a demo for people from the EU, I'm listening to an audio book, and as the plane starts going descending to land in Burbank, I am struck with the most INSANE vertigo, my eyes rolling back into my skull, I feel like the plane is crashing, this is how I die type vertigo. My eyes can't be controlled be damned holy shit I can barely stand once the plane lands I want to crawl to my rental car. Nope, I'm done. I am NOT going to my demo, it's not going to happen, I need to get back home ASAP. I call Niki, I need urgent care, this is not good. I'm dying. WTF is going on?! Holy shit! I'm NOT going back on a plane, fuck THAT shit, I'm driving right now back home to Vegas. I drive. The entire time, I'm either focused on an audio book or Niki over the phone. I can't look over my shoulders. I probably should NOT be driving. I don't fucking care, I need to get home. NOW. I have no way to get home. Fuck THIS. GO. I drive like a banshee. It's the worst drive to Vegas from Burbank, EVER. When I start the trek into Primm down the mountain, the vertigo gets even worse, like when the plane was descending. OMFG it's the goddamn air pressure! Holy jeez. Nope this is not fun. At all. I make it home, somehow.

We get to urgent care later that day:

UC Doc - "Huh that's weird, yea. Yea, you have uh some redness in your ear. Looks like an old infection."

Me - "Uhhhhhhhhhhhh, I still am having the vertigo like a fucking madman, it's been all day now, and my eyes are doing this stupid nystagmus. This isn't BPPV (Benign paroxysmal positional vertigo - ear crystals), or Labyrinthitis, I have had those before. It's doesn't feel the same. And obviously the air pressure change is making it worse. "

UC Doc - "Oh, Ok you know your terms, good. Been down that road before I see. Maybe it's Meniere's, but that usually has hearing loss and not the nystagmus. Here's some steroids and antibiotics."

Yea, I obviously need to get into see that ENT like right now. I call and leave messages. I'm still having the vertigo. I email. Nothing. Days go by, did I mention, the vertigo has NOT stopped. FINALLY get ahold them. Appointment in 1.5 months. I did say the vertigo hasn't stopped, right? JUNE?!? Uh... ok. well... shit. Hello vertigo, my new bestie. You're an asshole, bestie. On top of this, now I start realizing my balance is crap, I close my eyes, I just fall and can't feel it. Wow, ok, that is something new to fucking panic about. Lovely. Thank the fates and our good taste that we have a really comfy couch to park my ass for most of the day. We're still trying to get some things done outside, but I'm feeling like washed shit and can't help much while I wait. Vertigo is the new baseline of my days.

Finally see the ENT in June. By this point I am having vertigo on and off all day long. New constant is always fucking dizzy as fuck. Like you drank too much on a boat and got back to shore and your feet can't find the horizon, it's my new Jack Sparrow Sway. Do a bunch of tests. No hearing loss. Air pressure still fucks my shit up, they can't even finish that test. Finger in the ear still making my eyes have the nystagmus. My ear looks fine. We all assume it's just my right ear. Nothing significant to report, but probably, maybe, definitely not Meniere's. Maybe. Maybe it's a fistula (tiny hole). Time for a CT Scan, only way to see that. Maybe they can put in a drainage tube to help with the air pressure, but we'll see. He also gives me a nose spray (Flonase) for my allergies, maybe it'll help.

It's not a fistula. This is "weird", ok this is clearly past this ENT's wheelhouse. Let's get you to our other Neurotologist/ENT 2 in July. This is going nowhere quickly. Groan. I stop taking the Allegra for the Flonase spray. Helps the allergies way better, but does nothing else. Now I'm starting to get fatigue every day. Can't go an entire day without a nap. This shit is draining me, for real. I'm not keen to fly to LA for work meetings, I cancel flights. Besides the fear of air pressure changes triggering me, I'm just so damned tired. All the time.

End of June, my legs start to twitch uncontrollably at night and fucking hurt. WTAF. Dude, seriously?!? Now my legs are twitchy and my balance is still shit. Let's just say I am not loving life right now. I am in super pain all up and down my legs, it's agony. I get a couple what I assume are 3 bug bites on the back of my left knee, and 4 on my thigh, they are PAINFUL, and are not healing. I'm about to loose my mind. After a week or so of this, we go back to urgent care.

"Oh this is an easy one, it's Shingles." Wait, WHAT?!??! I'm way too young for that. "Well, looks like you are past the point any antiviral will do anything, so here is some antibiotic cream for the sores. Have a nice day." This just keeps getting better and better. Also, still dizzy all the time. Vertigo daily, STILL. Leaning on Niki hard while we are out, because any time it's dark and/or inclines in any direction, or I close my eyes, I still can't feel myself falling. Like at all, it's fucking scary. Shingles is no joke, but shingles AND all this vertigo, dizzy, and crap balance. I'm not in a good mood, ever, at this point. Understandably.

Back to the ENT 2, whom specializes in balance disorders and neuro related ear things. "Yea that finger in the ear thing is super interesting, never seen that before. Weird. Let's get a massive barrage of blood work to check everything from vitamins to lyme disease to neurosyphilis and a brain MRI. Also let's get a VNG (Videonystagmography) test to see where your balance is at. See you back in a month. Super weird, wild man, this is crazy." Cool man, glad you are entertained. I'm half amused, half annoyed.

Get all the bloodwork and MRI, now we wait. Waiting is always the worst part. You know, there are DAYS and weeks were the base line doesn't change. So while you wait, you are IN it and waiting.

At the VNG test, negative for BPPV (knew that already, since day one), my eyes work fine with tracking. Great. My hearing is fine, so it's not Meniere's. It's not Labyrinthitis (figured that as well). Moving to the next test, my eyes are not moving when my ears are stimulated by hot or cold air. Like at all, ZERO reaction. In BOTH ears and eyes. I ask 'What's supposed to happen when you do that? No reaction? Not get nauseous?" She replies, "Actually... the opposite, you are SUPPOSED to have a reaction." Oh... "Total caloric eye speed of 6, and 24 is the target for normal. Your vestibular system is not working, in EITHER ear. This generally means Bilateral Vestibular Hypofunction (BVH), and you should do PT, specifically VRT (Vestibular Rehabilitation Therapy)."

We go back to ENT 2, bloodwork all fine, except positive for Mono. Huh? "Is this from the shingles?" "No, anyone who has had Mono can have a positive result for the rest of their lives." Uh... actually, no I know that isn't true, but we'll skip over this for now and not worth the argument, maybe it's just a false positive. Too many other things to think about. MRI came back with some white matter lesions, but he says common with migraine. But I don't get migraines. "Oh, well it's probably Vestibular Migraine which is causing the vertigo, which doesn't always come with headaches per se." Coincidentally, not a single cluster headache since all this started. "So, let's start you on some Nortriptyline, and see if that works. Also, yes, start the VRT asap."

I start the new med and the VRT. When I go the the eval for the VRT, they do some more tests. My overall balance is at 50% overall of what is usual for my age. How???? Why??? They confirm when my eyes are closed, my balance is takes a nose dive of the shallow end. It's nil, nada, zip, zero, zilch, completely non-existent. This is not cool. Not fun or cool, at all. "Ok, so what do I do or take to get it back?" Not so fast, it's going to take time. And all this stupid VRT twice a week, doing exercises every day, morning and night at minimum. Well fuck.

Ok FINE. 1 month of VRT. I start using a cane, while out and about, so I don't have to lean directly on Niki.

2 months. Wobble is the new norm. Fuck you new norm. Fuck you very fucking much. Oh hey! I can now feel myself falling, well happy fucking birthday to me. There is THAT.

3 months, October. The vertigo has subsided quite a bit, now maybe getting it once a week. Maybe it's the medication, more likely it's the VRT. Most likely my brain was just "short-circuiting" from the loss of my balance. Ok, now... WHY. I need to know what happened, this still sucks, I'm still wobbly, I can't walk without a cane in the dark. Still dizzy all the time, but getting better. My balance has gone up to 72% of what it should be, but still completely zero eyes closed (or dark). I NEED TO KNOW, because how else will I "fix" this, right?

I'm getting antsy. I start getting out of my comfort zone and go to Lowe's without Niki just to see, obviously with the cane. I'm not having the vertigo. I want to go to my October meetings in LA. Dear lord, the airplane... I don't have enough energy to drive. Niki finds these ear plugs on Amazon for regulating air pressure (EarPlanes). Ok, let's try a quick single day trip. It goes surprising well. I have vertigo a couple times, albeit super quick episodes while on the trip. The EarPlanes work fucking amazingly, some positive news, finally. Maybe I can actually manage this. Everyone looks at the cane, most are confused. Everyone I chat with while in LA are supportive when I tell them what's going on. Best comment was: "maybe you should just say you laid down a motorcycle on a highway to save a pregnant lady and jacked your leg up". I love my people and our shared sense of dark humor.

November, I consult with my GP. Should I see a Neurologist? It couldn't/wouldn't hurt. Ok, appointment set for end of December (four days before Christmas), and my VRT "ends" in early Dec (fuck you very much medical insurance). I'll continue to do the exercises at home for now I guess. If I'm going to need the cane for a while, I might as well get one I like, so I do.

We go to the Neurologist. It's a very weird visit. He's is asking me questions, taking his time responding. Very nice guy, obviously thinks before speaking. Going over all my results I sent over. Very thoughtful.

Neurologist - "Take out your phone, open the camera."

Me - "Ok."

Neurologist - "Here take a photo so you can refer to it later, this spot right here on your MRI."

Me - "Yea, got it."

Neurologist - "Your ENT missed this, he saw possible migraine on the list of possible things and left it at that. These white matter lesions concern me."

Me - "Yes, we talked about that, I mentioned that about 15 mins ago when you asked me my other visits."

Neurologist - "Yea, ok. He missed this. I think you have MS."

Me - .......................

Neurologist - "Let's get you more bloodwork done, neck and spine MRIs... *cue Charlie Brown wah wahs* "

Me - ....

Neurologist - "... and a spinal tap."

Me - "Fuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuck."

Neurologist - "I know, sorry, they aren't fun. But let's do that and follow back up in Jan, and go from there."

Me - "Ok, wait you said MS?!?!? What then?"

Neurologist - "It can be dealt with, but it would account for all you said, plus all the weirdness with all the results so far."

As you can imagine, it was a quite anxious Christmas and New Years. More blood work, 10 vials taken in all at once for one, PTSD flashback to blood drawn when I was a kid when they found my iron deficiency. Brain electricity scans. MRA head and neck. MRI neck and spine. Already getting sick of getting poked and prodded. Then comes spinal tap time. 1 star, do not recommend. Hated it. "It'll just be a pinch..." Liars! Nope my body didn't like it one bit, it hurt like hell, all up my back and down both legs. Recovery was even worse, laid out on the couch with a proper migraine for a week straight. Like brain is going to leak out your ears migraine, light sensitive and all that. Nothing helped, not ice, not pain meds. Nada. Good times, indeed. Apparently, I've actually have actually never had a migraine before. Weird, huh?

Go back to Neurologist. "I'm not convinced it's MS." Well ok, thanks for that month and half panic attack and all the testing to go with it. "Maybe it's NMO." If it's not that, then he will refer me to another Neurologist for a second opinion just to make sure. Gotta love the go get 'em, figure it out attitude, but bro... send me for tests, but maybe don't tell me the worst case each time right up front. Go for even more bloodwork. "Btw, you have some syrinxes (cysts) in your cervical and thoracic spine. We're you dropped as an infant?" Huh? Uh, I don't think so? "Ok anyhow those won't do anything with this condition, but something to monitor yearly or so now."

I go out to Palms Springs for work. A whole 4 days planned. First night, I'm walking back to my room and it's pitch fucking black on the sidewalk, and I have to walk up a grassy area because of a puddle. I have to call Niki because I just cannot deal. I'm stressed. I can't walk. I have to use my phone's light to see so I can make my way back. I'm done. I just can't. This was the worst idea ever. Sigh. FUCK. I make it through 2 full days, going back to nap when I can, all the walking is too much. It's wearing me out, so much worse than I thought it would be. I just don' t have it in me to last the entire trip. I can't. I have to call it on day three, I'm disappointed in myself. I drive back home.

I have a follow up with the ENT 2. I want to stop taking the Nortriptyline as I'm not convinced it's Vestibular Migraine, and I really need a fucking drink at this point. You can't drink on Nortriptyline, and it's a bitch to get off of.

But moreover, I don't know if the vertigo being gone is from the medication or PT. I suspect the VRT PT. Besides since starting it, between my own searching and asking the physical therapist, I'm starting to suspect the BVH from a Neuritis (ongoing viral infection) in my inner ear. She tends to agree, they have been seeing that more and more, especially in younger people... Lingering viral infection, lines up with my symptoms, I had Covid late the year prior, and the "ear infection", and then the shingles. Too many coincidences to be coincidental. The timeline of events is WAY too close.

I speak with the ENT about this all. He still focuses on the nystagmus, which has since gone away, and deflects from the Neuritis, which is weird. Of all people whom specializes in inner ear infections and the such, and being the one that recommended the VNG. But such is the time we live in - it can't possibly be viral, that might mean we're not following up correctly with everything going on. The med is fine to stop, and if the vertigo comes back we know it was Vestibular Migraine. Come back when/if needed.

Spoiler alert - the vertigo doesn't come back full force, it's not Vestibular Migraine... Well least another thing ticked off. Lots of things ticked off, but not a lot to go on still. Fuck this, I'm starting to go back to my VRT. At least that was doing SOMETHING. My balance is still right around the same as it was in early Dec. So, still not great, but not worse. Yay, a small victory at least.

It's not NMO. At the neurologist, "Also, what about the fatigue? I'm super tired all the time. Like STUPID tired." This week I was back at the Strip for the yearly conventions, so doing the late dinners, drinks and all that as usual. "Maybe don't work so much." "Heh, right, but seriously, that's not possible." So he prescribes a MS fatigue medication, Amantadine. Cool, I don't have MS, but... ok, I'll just hold onto that for now, not starting that just yet. Referral received, and follow up for end of the year.

Enter Neurologist 2. This lady is great, spends around 2 hours with us. She's not convinced it's MS either. But the MRI is super low quality and she wants better images. Give her the entire story. Answers any ancillary questions we have. She mentions "You definitely have something going on in the sinus, ear, throat area, like maybe a Vestibular Neuritis, which damaged your balance." Hm, you don't say? "But let's get you more images, and you can come back."

Still doing my VRT, but I think now I've hit a plateau with my balance, so we're working on strengthening for tactical feedback so I can at least not fall, maybe eventually not use the cane.

VNG test number 2 as recommended by my PT, so we can see if anything has changed. Yep, definitely still BVH, and so far this is my ONLY actual 100% positive diagnosis. This year my total caloric eye speed has bumped up all the way to a whopping 9. Still shit, but upwards is a positive right? So how do you fix this? "You can't, if it's gone, it's gone. No getting it back, just learning to deal with it. But you should look up Neural Circuit Dizzyness." Yea, remember how I thought my brain was short circuiting from the loss of my vestibular working? Yea, cool. I get more dizzy when I am fatigued, so that tracks.

Cue two months later, back at the Neurologist 2. Definitely, probably NOT MS. "But let's monitor it yearly via MRIs for both your syrinxes and white matter lesions just in case, now that we know they are there. You should also find a new ENT." Know any GOOD ones in Vegas? "Yea... not so much. Maybe Mayo in AZ or UCLA in LA, but not many good or even decent ones in Vegas." Yea, I know that for sure, no one here specializes in BVH as ENTs. She gives me Meclizine to have on hand just in case I get more dizzy than normal for travel, and said the Amantadine might help, and try it out for a couple weeks.

Now - I'm at a point, I am sick of getting poked, prodded, jabbed, and all that. I'll follow up on follow ups and just for now focus on more VRT, bumping up the sessions per week, and see where we are at in a few months, maybe just finish out the year. I'm still fatigued all the damn time and debating starting the Amantadine. Balance is still crap when my eyes are closed, but now the vertigo only comes very rarely. Usually only when I'm beyond stupid tired, or overly exercised, and only for a few seconds at a time.

Still more to come, and a stupid, stupid long road ahead... to quote Monty Python: "I'm not dead yet!"

More background FYI - BVH affects only a very significantly small amount of people, I have read between .3-3% of the population. The higher number are ones who have this in addition to other related issues (such as BPPV or MS), and the smaller is having this without other conditions (related or not). The later, smaller percentage, appears to be my case - unrelated to anything else and its cause appears to be idiopathic (unknown or unknowable) for the time being.

For more info: https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/bilateral-vestibular-hypofunction/

#bilateral vestibular hypofunction #bvh #wandering #balance

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