1. < Epilepsy & Seizures

Feeling strong dizziness all of a sudden

Posted by Chris Gautier OR Santosha @santosha, Mar 25, 2023

Good Morning Everyone!
Those last two weeks I have had some dizziness all of a sudden, everything started to spin, even with my eyes closed. Last week, I had this first episode when lying in bed for a night's sleep. The next day, I was pretty tired and rested and then all was OK again. This Wednesday, it occurred again when lying down for relaxation in my yoga practice. Besides the dizziness, I had a heat wave all of a sudden, headache, and felt some pressure in my chest, right side. And sometime after, I felt very cold. As this time the dizziness persisted, I went to the first aid station at a hospital that is specialized in Otorhinolaryngology as I thought I might be having some labyrinthitis. The doctor who assisted me noticed a predominance of the right labyrinth over the left one, prescribing a med for the dizziness and recommending an onto neurological assessment. The doctor added saying that this might be associated with my epilepsy. I am feeling better, though still not at my normal. I must say that during those two last weeks, I had much stress with my mother's health. There has been no change in the medication that I have been taking for a long time now.
Did anyone had this experience before? How has this dizziness been treated? Did anyone do an onto neurological assessment?
Thank you very much if you could share your experiences with me.
Have a nice weekend!
Santosha

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Chris Gautier OR Santosha | @santosha | Apr 2, 2023
In reply to @jakedduck1 "@santosha Are you still having dizzy spells? Do you have any other symptoms accompanying the dizziness..." + (show)
@jakedduck1

@santosha
Are you still having dizzy spells?
Do you have any other symptoms accompanying the dizziness either before, during or after?
I wonder if these could be Focal Aware seizures.
Don't you usually have Focal Aware seizures or is my memory not functioning again?

Jump to this post

Hi Jake (@jakedduck1),
Unfortunately yes, though my dizziness got weaker this past week. Thank God. But still not able to practice my Pilates and Hatha Yoga.
I have other symptoms together with it: headache, fatigue and nausea. When I had it on March 25th, a heat wave invaded my body, feeling very cold afterward. This I did not have anymore.
My seizures are mostly focal simple and complex. I do not same this dizziness during or after a seizure. It seems to be something connected to the labyrinth. I have read a few articles and studies about epileptic dizziness. This is more common in Temporal Lobe Epilepsy. But in the studies, the dizziness is not connected to postural changes, they happen all of a sudden. My dizziness is mostly connected to postural changes. Let's see what the doctor tells me.
Santosha

REPLY
rosy54 | @rosy54 | Apr 2, 2023
In reply to @jakedduck1 "@rosy54 What did you doctor say was the cause. Doesn't Olfactory relate to smell? What about..." + (show)
@jakedduck1

@rosy54
What did you doctor say was the cause.
Doesn't Olfactory relate to smell? What about the visual hallucination?
Did he do any kind of tests?
you might want to discuss with him, whether or not you’re having temporal lobe seizures and ask him if he would order in brain MRI and an EEG or send you to a Neurologist or other specialist. Have you had any type of head trauma in the past or recently?
Did your doctor do anything that's suppose to help them or tell you nothing can be done? Do you feel well when this happens? smelling things that aren’t there is at all that unusual but you have other symptoms and it doesn’t sound as though your doctor took those into account
Jake

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I haven’t had any episodes lately. Every so often I get a certain smell I can’t distinguish, then arms get shaky and I feel dizzy. Less than 2 minutes it’s over. So haven’t followed up about it..

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Chris Gautier OR Santosha | @santosha | Apr 17, 2023

Hi Everybody,
Giving you an update on my dizziness. Thankfully, I am better 🙂 Today I have been to my epileptologist and after examining me he told me that the dizziness I have been feeling is due to Benign paroxysmal positional vertigo (BPPV), which means that stones/crystals in my labyrinth became dislodged. He did some maneuvers to try to reposition them and gave me some very simple exercises to do daily.
So, in case of similar dizziness check if it is not BPPV with your doctor.
Here is a Mayo Clinic link giving more details on BPPV: https://www.mayoclinic.org/diseases-conditions/vertigo/symptoms-causes/syc-20370055
Thank you so much for all messages you have sent me during this period!!!!
Santosha

REPLY
1 reply
salpal01 | @salpal01 | Apr 18, 2023
In reply to @santosha "Hi Everybody, Giving you an update on my dizziness. Thankfully, I am better :-) Today I..." + (show)
@santosha

Hi Everybody,
Giving you an update on my dizziness. Thankfully, I am better 🙂 Today I have been to my epileptologist and after examining me he told me that the dizziness I have been feeling is due to Benign paroxysmal positional vertigo (BPPV), which means that stones/crystals in my labyrinth became dislodged. He did some maneuvers to try to reposition them and gave me some very simple exercises to do daily.
So, in case of similar dizziness check if it is not BPPV with your doctor.
Here is a Mayo Clinic link giving more details on BPPV: https://www.mayoclinic.org/diseases-conditions/vertigo/symptoms-causes/syc-20370055
Thank you so much for all messages you have sent me during this period!!!!
Santosha

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Hi
It sounds like an aura - I get light headed and feel like I'm going to faint. I usually lie down and wait for it to pass. It's usually a sign that a seizure will happen. My neuro told me to take an extra med if this happens. I have these when I'm lyingt down which is really weird but I have nocturnal seizure.

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Chris Gautier OR Santosha | @santosha | Apr 18, 2023

Hi @salpal01
Interesting what you have shared. Does everything spin around you when you get an aura? If I understand well you have focal seizures as well? Do they come from the temporal lobe? Perhaps you have already shared that with us, but I can not remember now. Sorry, my memory!
My aura experiences are quite different from the dizziness I have been feeling lately. This dizziness happens when I am in movement, especially when my head moves. My doctor did some maneuvers with the head and body yesterday, identifying some nystagmus (rapid, involuntary eye movements) during those procedures, which led to this BPPV diagnosis.
I can have auras while I am seated quietly in front of my computer reading something. When I was younger, there was a specific smell in my nose and a specific taste in my mouth, symptoms that I do not have anymore. But what tells me that a seizure is starting is the feeling of deja vu. I can have auras while in movement, like walking. But I do not get the sensation of dizziness or that I will faint.
Does anybody else have similar experiences to @salpal01? Please do share.
Santosha

REPLY
1 reply
salpal01 | @salpal01 | Apr 19, 2023
In reply to @santosha "Hi @salpal01 Interesting what you have shared. Does everything spin around you when you get an..." + (show)
@santosha

Hi @salpal01
Interesting what you have shared. Does everything spin around you when you get an aura? If I understand well you have focal seizures as well? Do they come from the temporal lobe? Perhaps you have already shared that with us, but I can not remember now. Sorry, my memory!
My aura experiences are quite different from the dizziness I have been feeling lately. This dizziness happens when I am in movement, especially when my head moves. My doctor did some maneuvers with the head and body yesterday, identifying some nystagmus (rapid, involuntary eye movements) during those procedures, which led to this BPPV diagnosis.
I can have auras while I am seated quietly in front of my computer reading something. When I was younger, there was a specific smell in my nose and a specific taste in my mouth, symptoms that I do not have anymore. But what tells me that a seizure is starting is the feeling of deja vu. I can have auras while in movement, like walking. But I do not get the sensation of dizziness or that I will faint.
Does anybody else have similar experiences to @salpal01? Please do share.
Santosha

Jump to this post

Hi
when my seizures first started I used to get feelings of deja vu all the time. when I had auras years ago my head would feel like it was 'full of cotton wool'then I felt like I would faint.
I do have temporal lobe seizures and I always woke up with a migraine or tension headache after having a seizure but lately that doesn't seem to be happening. My seizures use to be quite violent in the 90's but since being put on Keppra life is so much better. I'm not sure if I'm having that many seizures these days so my doctor wants me to get a seizure watch.
My memory is not too good either so I have been keeping diaries for the last 10 years

REPLY
Chris Gautier OR Santosha | @santosha | Apr 19, 2023

Hi @salpal01
It is interesting to see that two people can have the same type of epilepsy and different experiences. Happy to know that Keppra is working well for you :-).
You mentioned that your doctor wants you to wear a seizure watch. Does this watch also monitor focal complex seizures? If yes, could you share more details? Thank you!
Have a lovely evening!
Santosha

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