I was told by more than one medical professional they do not like the word dizzy. At all. Because too many sensations are encompassed under the word ‘Dizzy’.

My main complaints since I was disabled in 2017 was this non-stop dizziness, and disequilibrium, and balance issues. And also intermittent vertigo that happens randomly.

And I am not getting better. If anything I am getting worse.

Vestibular disorder: stuck in dizziness hell zone

Dizziness

So since doctors hate this term I said ‘woozy’, ‘out of it’ and ‘light-headed’. It is so hard to describe. But it gets worse as the day goes on until I am useless and zoned out. I have a hard time being upright. As in I cannot sit up for long or stand for long. Without medication, that is. But it is getting worse, so even with medication, things are getting problematic again. Laying down is the best for it (NOT the best for fibromyalgia that does Not like it when you stay in one position for too long without a lot of pain).

I even ‘wobble’ when I stand too long… sort of weave back and forth. And just do not feel well at all. So any line up anywhere for any length of time is an issue for me.

Everything I try to do… like even minor housework makes it worse… and I have to lay down.

It is Dizzy. It is the best word to describe it. It is a horrible feeling. The vestibular clinic girl said ‘like you’re drunk?’ and I agreed. But more like drunk and stoned at the same time. Certainly, to the point that it is hard to understand things and do things and think and focus. I can’t really read a book for more than a couple of pages a day.

Disequilibrium

Now, this… this is the sensation of falling when I am not. And the sensation the floor is falling slightly, moderately, or abruptly and severely when it is not. I know this is a vestibular thing … that I have no sense of internal balance and my brain feels like it is falling when it clearly is Not. But this is constant if I am not on medication. And can cause falling when it is abrupt and severe. Right now it is getting worse again but not severe… just to the point, I feel like I am moving when sitting and the floor is vibrating and that feeling of falling in my head. And the floor is beginning to feel spontaneously very unstable at times.

Balance issues

This is weird. I can’t walk straight… I will just walk towards objects like corners of walls or doorframes or people or objects without realizing it… and bump into everything. I can’t do any of the balance exercises… like walk one foot in front of the other, or stand straight and close your eyes… yeah, No. None of that. I have spontaneously just started to fall that had nothing to do with the sensation of falling… just started to fall. I walk like I am drunk really and the cane helps a lot with that.

Fatigue

This is immense. I have never with Fibromyalgia and migraine felt fatigued at this level before. Where just standing and walking a few feet or standing in one place for a few minutes is so utterly draining to me. My body has no energy in it at all. Everything takes way, way too much energy from me. I don’t even feel like doing things… like socializing because I feel so dizzy and so fatigued… it is so hard to pretend to function for any amount of time.

Vertigo

This is sporadic for me. And I feel like it may be caused by my migraine attacks and not related to the rest of it all which makes for a confusing diagnosis. I feel like all the rest of it aggravated my vestibular migraine. But even so, with the medication, I rarely get vertigo now. When I do it is severe external vertigo that is short in duration but effects me for hours after the attack. Or I get internal spinning vertigo that lasts longer but isn’t as severe… I just lay down and ride it out.

Those are the Big symptoms but there is a lot of weirdness that comes with all of this. Ringing in the ears. Pressure in the ears. All sorts of vision issues. Just weirdness.

Vestibular testing

I passed all my vestibular tests which would, I assume eliminate most vestibular issues. Even got to spin in a chair in the dark (not a fun amusement park ride, by the way). So good? Or further away from diagnosis?

Except for the caloric test. Which shows a 45% approximate difference between my ears. My left ear they couldn’t get to respond and my right ear responded quite well. That was the only abnormality. This is what I found about abnormal Caloric test results in particular for me it said:

Hyperreflexia

Hyperreflexia may be associated with central or peripheral vestibular diseases; it is the situation in which caloric induced nystagmus exceeds the normal range. Some researchers have established that hyperreflexia is a nystagmographic response over 40º/seg to 80º/seg.25

In peripheral vestibular disease, hyperreflexia may be seen in the contralateral labyrinth to that with a deficient response.2226

Bilateral hyperreflexia may be observed in central vestibular diseases. In a state of normalcy, the cerebellar flocculus inhibits vestibular nucleus neurons, thus inhibiting the VOR.2326 Injury to this region affects this inhibitory function, increasing the excitatory state of the vestibular nucleus, resulting in bilateral hyperreflexia. This mechanisms explains bilateral hyperreflexia commonly seen in multiple sclerosis patients.2728 Bilateral hyperreflexia of no apparent cause – such as in anxiety or upon ingesting psychoactive drugs – added to fewer neurovegetative symptoms than expected for the observed hyperreflexia, may indicate central injury.262728

Which of course, makes me wonder if all of this is a Multiple Sclerosis issue and not a vertigo issue. But my neurologist is positive although my MRI is very MS looking… I do not show enough Definitive signs of MS. But at the same time, he could not explain this test result on the caloric test the first time I had it. He believed it was a faulty test… and that is why I did it again… and got the same result. So he has no idea why that is. And this article suggests damage in a specific area I do specifically have a lesion on my brain… so I have no idea. But I am not sure if mine was bilateral or not. I have not heard from them since I have done it. But if it isn’t it is still indicative of peripheral Or central vestibular issues… but Not generally By itself when one does fine on everything Else.

The tech asked me if I have Multiple Sclerosis in my family because she said results like mine can often indicate the problem isn’t vertigo but MS. And I was like well, yes I do, and actually my brain has a crapton of lesions, but my neurologist is not convinced. I’m not even convinced. But it is Something.

Limitations

  1. Clearly, I can’t drive like this
  2. I need to walk with a cane… even in the house now
  3. I cannot go out and about for long
  4. Limited in mild activities and need a lot of rest after
  5. Basically cannot read much at all anymore. Actually, very few activities or hobbies I am actually capable of (I was drawing for a bit but now takes too much out of me). And those I am capable of, like writing (basically that is the only one left) very limited amount of time at it.
  6. Cannot sit up too long
  7. Cannot stand for long at all
  8. Cannot walk far
  9. Fall risk
  10. Some days I have to rest/nap all day long, and that is becoming more common
  11. Limited energy. Very, very limited energy. A Lot of fatigue.
  12. Limited capacity to concentrate, think, focus.
  13. Have to take a couple naps a day to function even a little

Life is getting pretty narrow here. And I am tired. I just want some answers and treatment. But I am not going to get that any time soon. I have 2 MRIs to check on the possible MS issue on May 30 and see the Neurologist I believe in October. Other than that… there is nothing more to do about it.

It concerns me it is worse. I do not know if I am getting used to the medication but the medication is the only one I can take and I cannot take More. If anything, I cannot be on this medication forever. It is supposed to be temporary. Maybe I am used to it. Or maybe I am getting worse, which is obviously concerning to me since no one seems to know a damn thing about what is going on.

I’m not impatient to find out the issue, I am beyond frustrated at this point. I am worried they Won’t find out what the issue is and I will just have to live like this. And that doesn’t sound fun at all. Life is pretty limited with chronic pain. We have some serious limitations and we have to pace all the time and recover and rest. But with this, there is no variation, no good days, no capacity to pace, everything makes it worse, and the limitations are so much more severe. And my pain is worse due to inactivity. It is not a good combination.

I think I am handling it mood-wise pretty good really. I do not know how long that will last when every day only a small slice is available for anything at all… and the rest is just resting and unable to do anything. That sort of drags one’s mood down. The lack of the ability to distract yourself. To occupy your mind. To stimulate your mind. Maybe I should get into audiobooks? I don’t know. I have books I have to read that I Really want to read (I LOVE to read) and I can’t. A couple pages at a time and then I can’t focus anymore… brain-wise and eyes as well. That is depressing since I was such an avid reader. The Lack of things to do… gets to me. TV bores me. Daytime TV bores me… it is some level of hell I am sure where one is forced to watch Daytime TV for eternity.

And I am pretty isolated. I can’t really leave the house for long. And when I do I really do not feel well very fast… being in a car and feeling the motion… being somewhere and having to sit up the whole time and try and focus… just sucks everything from me. Then the symptoms go nutbars and I have to go… like right Now go. So I stay in the house. And be endlessly bored. And try to do some writing when I can, bit by tiny bit, to give me something to do… with substantial effort. Then right after take a good nap because that exhausted me.

What a pity party! Bleg. Just saying this is not the way I want to be for another 3 years. And if it takes them another 3 years to figure this out I will be Pissed but at least happy they figured it out. Which is better than never figuring it out, eh? Being Dizzy McDizzy pants forever sucks balls I’d say.

But if that is the case, I am sure I will find ways to adapt... lay down and write on the laptop for example ( might have to do that somehow now). Audiobooks are worth a go although I never used to like them, I can’t read and not being able to read is really getting me down, so an alternative might be worth it. Just ways to do things to pass the time… laying down because I am less dizzy then. And naps in there to store up whatever energy I have. I’m sure I will figure out some way to Squeeze some Life in there somehow. Or go nutbars from utter boredom.

Amazon Audiobooks

See more

Undiagnosed: That Limbo state

The vestibular clinic adventure

7 reasons vestibular migraine sucks

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8 thoughts on “Vestibular disorder: Stuck in dizziness hell zone

  1. Reading this and it’s basically my everyday, and it’s awful. My neurologist ruled out MS and Meniers Disease and just out me in the FND group. I’ve had 2 MRI scans, lumber punch, been to balance clinics and still no answers. It really is a sad state of affairs when we end up this way, and ask ourselves “why?”. Best wishes and keep fighting

    Liked by 1 person

  2. Nikki. Phew. You have a way of writing that lists all the medical names and diagnostics and then it just ends with the fact they don’t really have a clue. I had similar kind of experience. Only by chance did they offer some drugs to alleviate pain and give me more energy or mobility. I rest from toilet seat to toilet door. From kettle to fridge. When they get too wordy and confuse me with the drug carrots in my face or a diagnosis which has even less direction or solutions I realise I know more than them about my disease. Which is to say I know more about me than they ever can. Despite fucking MRI which I refused after one second to submit too. You are so tough. So determined to live well. So inspiring I would just offer one thing. Lie down. Put on some inspiring and hopeful story. Start Healing yourself. Listen to how others did it. Dip yr toe in the water. I’m almost sure this comment may be annoying. I apologise if so. When all I could do was lie down crying I made sure to listen to stories of recovery and acceptance. It just skewed my focus to an operating software of hope instead of despair.

    Liked by 1 person

    1. I am trying for sure to recover, rest and find things I can do in this laying down state. I hope this is not my new normal but I do have to adjust to it as it is for now for sure. ❤

      Liked by 1 person

  3. I am so glad I’ve discovered your blog! I have tried, without much success, to describe disequilibrium to people but I might just direct them here in future. You communicate its impact so clearly.
    I don’t get it too often thankfully, so it must be really hard for you when it lasts for so long particularly when, as you say, staying still is just the worst thing when you have fibromyalgia. Thank you so much for sharing your experiences x

    Liked by 1 person

    1. I am sorry you have issues with this as well but I am glad you found something you could possibly use to describe the experience… which I agree is a tough one to describe.

      Like

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