I thought I would write a post about dealing with a vestibular disorder day to day to give you a peek into my life lately. Mind you, I also have chronic pain so that does complicate this tale of woe a lot. Nevertheless, I will focus on the actual vestibular symptoms.
It is migraine awareness month and it is possible I have vestibular migraine. Possible because I DO have vestibular migraine but it was episodic and intermittent not constant. And as of 3 years ago the vestibular symptoms have been non-stop. The vertigo bouts remain erratic but the other symptoms, like severe dizziness, never stop.
First, I am on clonazepam to repress my vestibular system 3 times a day… so this is going to be a day to day with that medication. Because without this medication I am a non-functional couch potato and mental meatball. It is hell really. Not worth talking about because it just is not much of a life at all. I really cannot function at all. All the symptoms are magnified. I can’t think. Walking, sitting, being upright are all very difficult. I feel like I am falling and I do fall. Drop attacks happen. My hearing goes wonky with high pitched ringing usually with a severe vertigo bout. It is all a big mess. But like I said some symptoms are constant and it implies my fatigue Immensely.
I used to be a night owl with pervasive insomnia and painsomnia. But vertigo goes from not so bad in the morning to severe at night and it drains every bit of energy from you… just from your brain trying to be, well, upright. So you are fundamentally exhausted and therefore no more staying up late, I’ll tell you that. It is physically impossible. So I go to bed at 10 pm to 11 pm which for me is Impressive as all hell. Not 4 am. And I get up early.
And mornings are my very best time of day and if the morning sucks… I am in for a very, very bad day. So I can gauge my day based on how bad the symptoms are in the morning. Being as it is my most functional part of the day this is where I often do things like write because my brain works better and I am not quite as dizzy and ditsy yet. And obviously, after my first pill in the morning is peak time.
Now you’d think that would mean I am sleeping awesome. But I am not. I still have insomnia and wake up frequently and stumble around like a drunk if I get up… it is just I am drained to my core and crash early and get up early.
I need 2 -3 naps a day on any given regular day. Like I said it is exhausting for the brain to try and deal with vertigo. And I get so very tired as the symptoms get worse and to compensate for that I need to nap once in the afternoon and once after supper. One a normal day. If I do a THING like some mild housework I must rest after because that THING makes me worse.
If I go out and about into the great outdoors to a doctor’s appointment or to coffee with my mom… well that is a Massive THING and it requires rest and a nap when I get home. I cannot be upright or standing too much in a day. Upright and standing are the worst positions for me so the more I do the more I need to then rest. It is why I now use the laptop on the couch because being upright in the computer room makes me feel sick fast.
Other days, like the last three days I cannot function at all due to pure exhaustion. The fatigue is so immense and I am so very tired I lay down and rest all day and nap several times a day. And sleep fine at night as well. It is just pure exhaustion. I have tried to do things to keep myself awake and alert… to no avail. This happens more than I would like. It is just a bad vestibular day and so it is so draining I cannot sit up to do things and have to lay down. And I can’t read due to the symptoms so I just lay there. Often trying to watch TV which makes me uncomfortable. Often so tried I just sleep.
Symptoms vary due to medication. They are not nearly as severe as when I am on less medication let alone no medication. One thing is consistent and that is dizziness that gets worse from morning to night… and really never, ever stops. It starts getting worse at around 11Am when I take my second pill which is less effective and it is downhill from there. The more I do or focus the worse it gets and the less I can focus… and then if I try I zone right out. Like if I am having a conversation… no idea what they are saying.
I get external vertigo spins… those, if I am standing, Will make me fall- they are short in duration but strong. I am out of it with them. I will fall if standing or stumble sharply to one side and into a wall or anything here. I do have to lay down. After they pass I am left with a very strong light-headed, woozy, dopey feeling that takes hours and hours and hours to fade. However, these attacks are Fewer with medication. Lately more than usual because the vestibular disorder seems to be getting worse or more erratic.
Internal vertigo lasts longer but isn’t as severe with medication.
What is common, but not Nearly as severe with medication, is lack of balance, the feeling the ground is moving, the feeling I am falling… it just gets way, way worse with less medication or no medication. And that is why I need a cane- it helps keep me stable from walking into things, falling into things, and just plain falling. When that symptom is severe… like on 2 pills or 1… the cane isn’t quite so helpful since it is like the ground IS NOT THERE. But the balance issues are always there. Always feel off-kilter and unstable. Standing for any length of time and I start to weave back and forth and it is draining. But yeah when things are worse the floor is moving, undulating, falling. And then worse I feel like I am falling in my head, over and over and over.
If feels like gravity is heavier for some reason. Like it is pulling me to the ground. And Into the ground. It is a weird feeling.
I get sudden bouts of extreme dizziness and then after I am confused and zoned out for hours. Not sure what that is about but it happened when I was working a lot… and obviously that led to some issue because I was so out of it I couldn’t understand what a customer wanted or how to do it. I think my spouse thought I was nuts when this happened yesterday because I didn’t know what he meant so I asked a stupid question and he just looked at me and then corrected me slowly. And I was like Oh. And it happened the week before when he was explaining something and I had to stop him and say ‘I don’t understand what you’re saying. At all.’
I can’t walk straight at all. I think I am and then I walk into a corner or a door frame or a wall or into a person or furniture… just like I walk towards it instead of going straight. It is insane. And annoying.
And there is constant dizziness. Medication or not. Just not as bad with medication. Less severe in the morning and gets progressively worse. The speed at which it gets worse depends on what I do and how much rest I have. It is a horrible feeling and is very hard to think through or tolerate. And it Never stops. I can do some things while dizzy I have learned, when it is milder… like edit my writing a bit (with an editing program not my eyes). Small short bursts of reading. Some social media. Blogging, maybe with more errors, But I Can do it. Just have to pace it. And ensure I take rest breaks. Do. Rest. Do. Rest Longer. And done for the day. Again, the window in the morning is Best and even that does suck.
But Normal now is constant dizziness that progressively gets worse so I get worse. And also the other symptoms get worse so I get more unstable. And this speeds up by doing Anything at All. So if I do nothing and just lay around resting and maybe writing I can last longer. But if I am upright and do even a little housework or leave the house (and be a passenger in a car Moving) well then it speeds up. Either way, it progresses anyway. But everything speeds it up so Pacing is a lot harder with this vestibular issue. If I want to socialize and it is human nature to do so, I have to rest all day up to the point of it, and even then not too long- and sometimes the vertigo goes nutbars for no reason I can fathom and I need to get home STAT.
Anyway, I feel really out of sorts all the time. And I just try to get through the day with this assortment and assault of symptoms making everything feel just off and compromising my mobility and cognition. It is why I loathe it so much. Why I had such problems adjusting to it. Why I would love treatment for it. Because my functionality tanked with it. And my capacity to do anything for long durations is shot to hell.
I thought my memory and concentration Were bad before but now it is insanely bad. Brain fog on crack. Or so zoned out thought is not possible- just this confusion. It is insanely frustrating for me. It isn’t just that my body can’t figure out where it is in space so it is stumbling around and feels like it is falling and so forth- it messes with my head in ways that are so intense sometimes. And mild symptoms are bad enough like a permanent glitch where I am slow on the uptake on everything and it takes twice as long to read or write (with many errors) anything, best case scenario. So best case scenario I wouldn’t want That forever. Let alone the hell that is the worst case, me without my meds.
Sort of a downer, eh?
I hope it doesn’t sound poor me or whiny. Because I am coping the best I can and doing the best I can. I am coping better than I ever would have in the past because I am more resilient than I ever was. I have a lot more acceptance. And pacing the best I can. And fitting some life in there. And using a cane for balance. And learning how to do things and when I can do them and for how long. So no poor me. I am dealing. I do want a diagnosis. I do want effective treatment. I do want at the very least some reduction in symptoms so I can function better. However, I am trying to deal with what I have as best I can and hope somewhere down the road that does happen.
It is just that this is actually screwing around with my quality of life More than chronic pain which really is startling to me that something could be worse that the hell that is chronic pain. I wouldn’t wish chronic pain on anyone, ever. But while this isn’t as emotionally volatile or as raw which makes chronic pain so hard to cope with day in and day out… it is very disorientating and limits my capacity in all things in a way that chronic pain didn’t always. Like the cognitive issues that get severe with the vestibular issues are much worse than chronic pain. The mobility issues are much worse so it is harder to do things. And the fatigue is so insanely worse that there are days I cannot even function with it, and most days I need my naps just to get through. And that is worse than chronic pain… which IS exhausting. So it is like a new level of non-functional I wasn’t even aware existed. And so utterly and completely dependent on medication to function even a little bit. And even then, it isn’t good. So you feel just all over SICK. And DISABLED. In ways you never did before, or not as much.
And that, takes some time to adjust to. But this one? No real workaround. No real capacity to pace around it… it just gets worse as the day is long no matter what. You can make the day worse, yes, but in no ways can you make it better. And it is freaky. It freaks me out. All these symptoms and what they do to me. Freak me out. Like what is going on in my brain causing all this muck? And will they ever be able to do anything about it? If not… at least I am slowly figuring out the way things are. My new normal. My new pace. And it is not a turtle’s pace. It is a snail’s pace.
What is the cause?
I have no idea. My doctors have no idea. I don’t think they will ever figure it out, to be honest. I can only hope it disappears as rapidly as it came on, which with vertigo is entirely possible. It is weird like that, depending on the cause. I can explain exactly how it came on. I can tell you how different it is from any vestibular migraine I have ever had. But I cannot tell you want it is. I’m not a doctor and there are so many types of vertigo that, frankly, are all rather similar. So I am clueless.
I can’t stop this. I have to deal with this lower functionality. So my job is to:
- Rest and recover as needed. Whenever it is needed.
- Do things in small short durations
- Pace aggressively
- Do activities for mood, like hobbies and such in the morning when I can function the best. And always rest after. Always pace and recover.
- Never push myself
- Take care of my mood
- Do mild lay down stretches to manage the fibromyalgia pain from this excessive resting I need to do at this time
I am resilient. I will persevere. I can deal with lower functionality as best as I can with the coping skills I have.
I’m not saying it doesn’t get to me though. The idea of being stuck like this. Or a really bad day just knocking me on my ass. It is hard. But I deal.
Fibromyalgia pain complication
Fibromyalgia does not like 70% of resting a day. Too much staying in one position causes a Lot of fibro pain. Also over time I assume it has weakened my muscles which just increases the pain. So I knew I had to do something about this because it is severe. I have begun to take very short walks very early in the morning. My dizziness is not funsies in the morning but it is Peak Functionality time. So I take my cane and go for a 15 minute walk early- if I wait till 11 am I miss my window and am them too dizzy to do it.
I have been doing it for about a week now. Missed 2 days due to severe 9er level migraine attacks but otherwise I have been consistent. And it is helping loosen some of that horrible muscle pain from fibromyalgia. However 15 minute walk is actually extremely hard to manage so I will remain at this point for a bit before I had a minute or two more. I am for half an hour but it will be slow progress. And that is fine. Do not want to exceed my limits pain wise or vestibular symptom wise.
I find it insanely frustrating I have no answers on what this vestibular disorder is or how to treat and manage it. Mostly because it severely impacts what I can do in a day and my capacity to function overall. Everything is just so damn draining. Standing. Walking. Sitting up too much. Doing any teeny tiny activity. So, yeah, I am very frustrated about that even if I am coping as best I can. I do Not want to be Stuck like this. No thanks. But I understand that just may be what happens. However, I am aware it could get better just as fast as it tanked. Vertigo conditions sometimes do that. So who knows?