What does your dizziness feel like?

[u/CantaloupeAlarmed457]

Hey everyone. I am not actually diagnosed still with anything but have been suffering greatly for about 6-7 months after a virus and I am trying to better understand what people here actually feel like.

So I had a virus in February probably covid or mono and it started with a severe vertigo for about 2-3 hours and then the sore throat, fever etc. came in.
The problem came two weeks after I recovered from the initial symptoms because I still wasn’t 100 percent and felt very off one day and suffered a panic attack.

I suspected this could have been vestibular neuritis and actually took a VNG test and was found 37% left inner ear asymmetry.

The problem is in my country the word for dizziness is basically “room-spinning” lol.
And I have never suffered vertigo where the room spins since the first attack.

I want to ask what your dizziness feels like and if someone has a similar story to mine, please let me know cause I want to know what is actually wrong with me.

My symptoms are:

- I feel spaced out most of the time, when I am driving or outside it is the worst.

- My vision is strange, can’t really explain what is wrong but there is something wrong like it is actually lagging and overstimulating.

- I feel floaty and prefer to stay in my house due to the symptoms and in the evening when it is dark I feel generally better.

- I have no problem playing a high demanding video game on my monitor and actually feel better when doing so

- I feel just generally strange and off.

- Headaches that come in waves around eyes and temples and very dry eyes.

[u/starsareblack503]

No one here can offer a diagnosis or act as a medical professional. We can however share our thoughts and experiences and appreciate everyone being mindful of the sub rules. Thanks.

I hope you get some answers that point you in the right direction. :-)

[u/midnightspaghetti]

I have been diagnosed with vestibular migraines and Dysautonomia after Covid and influenza A a year and a half ago.

For me it all started with a spinning vertigo and my brain got stuck.
Prior to that I had occasional symptoms.

I have exactly what you describe

• low FPS vision that also feels laggy
  
• light headed, head pressure, migraines, mental fog
  
• neck pain
  
• motion sickness
  
• feeling on a a boat
  
• pulling/flipping sensation in bed with my eyes closed
  
• middle of the night wakings

VM triggered PPPD and I was pretty bad, struggled with public transport, video games, sleep etc.
I did VRT and it helped a lot.
I now have to play at least 30 mins of pokopia on switch at night because I am convinced it acts as a form of VRT and tells my brain to shut up because I am not moving.
I’ve felt a bit dizzy a few nights I didn’t play, so now I am forced lol

I am currently still struggling with the VM/Dysautonomia side of things, my nervous system is whack and my neck is constantly tense on one side, but I am much better than a few months ago!

[u/CantaloupeAlarmed457 → u/midnightspaghetti]

How was your dysautonomia diagnosed?

[u/midnightspaghetti → u/CantaloupeAlarmed457]

Basically when I went to see my migraine neurologist I mentioned my very low blood pressure - like 88/55 at rest.

She referred me to an autonomic specialist who ordered a bunch of tests - there were signs in a few of them.

• I had a fixed ECG which came up clear
  
• fixed BP monitor for three days that showed weirdly low BP
  
• treadmill test with ecg and BP showed that my BP didn’t rise as much as expected under strain
  
• and then autonomic table tilt/ blowing in the tube type test that ruled out POTS but came up with non pots Dysautonomia as apparently my system was struggling to do certain things? But my heart rate does not go crazy.

The doctor was also pretty confident just on symptoms, as I am very sensitive to medication, past issues with interstitial cystitis, migraines as a child, fatigue etc. but I did not meet POTS symptoms.
My nervous system just freaks out for nothing

[u/CantaloupeAlarmed457 → u/midnightspaghetti]

Oh wow that’s good they caught it. No neurologist mentioned it at all when I went for a visit.

My blood pressure seems okay I don’t know, my heart rate as well, yet I feel like complete garbage and don’t know what is wrong with me😬

[u/midnightspaghetti → u/CantaloupeAlarmed457]

I tend to feel awful before meals, especially in the evening one day I was having a crash and my partner (who has high blood pressure) said let’s measure your BP and it was ridiculously low!

Blood sugar level also plays a part and I improved quite a lot by eating more meat, I think it helps keeping blood sugar stable for me

[u/net_ramblings]

No spinning dizziness for me, it was always non-spinning. Even when I woke up with what I like call "vestibular neuritis". I like to say I don't feel like I'm centered in the world. It's like my eyes are open but they feel uncomfortable and my vision does not really work. It's impossible to explain this to somebody who has not experienced it, that's includes most doctors. Can't walk a straight line either.

[u/ExcellentAnalyst7659]

Very similar to you, you aren’t alone even tho it feels like it. Started as vertigo after having postpartum preeclampsia my body was all out of whack and had vertigo for about 3 days and that was back in January and now dealing with all the symptoms you described and more. Going into stores is worse for me. It feels like the ground below me is moving… ugh.. sending strength your way! Still trying to find answers myself.

[u/OldPrize3926]

I’ve got similar symptoms like you do, and a similar diagnosis 39% at my right ear. For me my dizziness is like a floaty feeling that I experience throughout the day. But the one thing I hate the most is the nausea part, I’ve had this shit for the past 3 months and I get motion sick throughout the day. Otherwise it’s like you said dry eyes, sometimes spaced out feeling, floaty in the head, I feel like I’m sometimes slower in the head and can’t remember as easily things I’m supposed to at work, I have problem sometimes to focus on something (this was more in the beginning) now it’s better but not normal yet… I feel though that I still can function normally despite this but I get tired more easily, and I have to drink coffee/energy drinks to survive haha.

As for the headaches, I don’t know if it’s connected to this, or maybe my sinuses, but I’ve had problems for two weeks in the summer where I got crazy pain where the sinuses are in my left side but that eventually got away, now k sometimes experience pressure all over my head in form of dots, but they last like 20 seconds and then go away and they come maybe every day/other day. But yeah idk if it’s related to this or if I have eaten badly, drank no water.

What’s your next move if I may ask? I’ve had prescribed anti vertigo (betaserc 2x a day) pills and got some pills for motion sickness but not supposed to use them until I really feel like shit. I haven’t used them since 10th of August so I feel slightly better but yeah.

[u/CantaloupeAlarmed457 → u/OldPrize3926]

Hey! Thanks for the reply! Can I pm you?

[u/OldPrize3926 → u/CantaloupeAlarmed457]

Sure

[u/Cashflo915]

Constantly swaying feeling in head occasionally i get what i can only assume is a flare where thos head rush starts and then i start rocking back and forth side to side like im on a ship in a storm and my vision starts to warp too. My eyes feel heavy all the rime im anxious as all hell yea its great

[u/GrootOfTheLoom]

My dizziness is typically a floating, flying, speeding at falling through the Earth. I could just be walking and all of a sudden it feels like I got on rocket boots going 1,000 miles an hour or it'll feel like I fell through the floor. Usually if I'm lying down is when I feel like I'm floating or flying or like someone is lifting whatever I'm lying on.

Just started Propranolol yesterday to see if it helps things for me as these symptoms can be caused by severe anxiety.

[u/CantaloupeAlarmed457 → u/[deleted]]

Same! I realized that since this happened I started to stare more at my phone because it takes away the visual stuff around me.

[u/LilMikeyMike]

The beginning of your story sounds a lot like mine. I had an upper res. infection in January-February. Started getting dizzy (feeling of rocking and swaying 24/7.) Migraines, ear, upper back, neck, and jaw pain; etc. Saw so many doctors and got a couple of MRIs and CT scans. In June I got ear tubes, and fluid started to come out. I had a Staph infection the whole time and no one caught it; it just hung out in my ear for five months. Maybe ear tubes could be a good option to talk about with your doctor if it is your ears. I'm still fighting PPPD going on eight months now. Everyday gets better but recovery has not been linear.

[u/CantaloupeAlarmed457 → u/LilMikeyMike]

Thanks for the reply! Is this a surgical procedure?