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I still don't know what's 'wrong' with me, but it's been YEARS

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(@dizzycat)
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Joined: 2 years ago
Posts: 6
Topic starter  

Hi, I've just joined here. 48 year old female, problems with balance/dizziness/vertigo etc for maybe 25 years. This might turn into a long post, sorry!

I can't pinpoint when it all started right now, I'm in a bit of brain fog after a bad 'episode' last night. My big issues right now are bouts of unsteadiness, not knowing which way is up, feeling spaced out, feeling like my head is being pulled to the floor in front of me, visual disturbance, head pressure and headache, pain around eye sockets and in cheekbones, neck pain, ear fullness/pressure, feeling like I'm walking on a boat on a rough sea, sleepiness, anxiety... I have to be very careful with how I move (no quick turning!), and where I'm looking when I'm in motion. During a bad episode I have absolutely no idea where I am in space, which way up I am, and feel I have no control or strength to hold/save myself.

Some of the things that set me off - escalators, pattered carpets, crowded and/or huge spaces, driving past hatched road markings and lines of cones, driving through trees with flickering sunlight coming through, sideways scrolling on netflix-type screens on the tv, someone moving a lot when I'm trying to talk to them, general background movement, probably many more things.

I was first told I was suffering vertigo around 20 years ago, I can't remember how long it lasted but I know there were other similar episodes Ā (infrequent) prior to that. About 16 years ago I was given a steroid nasal spray for a 'sinus issue' (thanks for the clarity, doc), supposedly for 6 months with a view to further investigation if no improvement. This continued for 18 months with no further investigation. I now buy it OTC and use it during pollen season. 10 years ago, a nasty bout of vertigo and doctor diagnosed migraine associated vertigo - clearly hormonal as it was in a regular pattern. This eased off after around 6 months, but my migraine type seemed to have changed to include more vestibular disturbance in general. Around 6 years ago, I finally saw a neurologist. A positive head shake test and a diagnosis of vestibular neuronitis. I asked what can be done about that, he said 'get your migraines under control'. I looked up vestibular neuronitis afterwards - I have struggled to find any reference to this being a permanent thing, and what the cause/treatment options are? I was referred to a physio for vestibular retraining, but they refused to treat me until I had seen ENT (and couldn't believe that I hadn't ever been referred to ENT considering how long this had been going on). ENT put a camera up my nose (and into my soul, it felt like), and then wrote a prescription for antibiotics and nasal drops. I questioned the antibiotics, as this was a very long term issue, and was told that actually, yes, I had indeed had a sinus infection for 14 years, albeit one that had waxed and waned. The ENT also declared that the neurologist didn't know what he was talking about as he couldn't see inside my head. This was the point at which I gave up asking for help.Ā 

On a friend's recommendation, I had regular sessions with a McTimoney chiropractor for around 18 months. It was discovered that my atlas and axis were out of alignment - in her words, my head hadn't been on straight since the only event forceful enough to have caused it, a car accident in 1995. I did find that in the days following each session I suffered less, but inevitably, I slowly reverted each time. This was put down to muscle tension pulling things out of alignment again, after so many years of being used to holding an incorrect position.

I came across this forum after a google search led me to a post mentioning PPPD - bit of a lightbulb moment! If you have read this far and have any thoughts I would be so very grateful.

Thanks for reading, wishing everyone a good day.


   
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(@dizzycat)
Active Member
Joined: 2 years ago
Posts: 6
Topic starter  

I just came across an article here on 'Neurotoxic Vestibulopathy'. I took mefloquine (Lariam) for 6 weeks in 1995. It made me very ill, so much so that I cut my planned 3 month trip short, returning home after 6 weeks (and I stopped taking the Lariam whilst still away as I suspected that was what was making so unwell). I'm thinking this could have been the start of it all, and the 'trigger', if that's the right word, for what could potentially be 3PD?


   
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 Sand
(@sandstorm)
Joined: 3 years ago
Posts: 37
 

Have you seen a vestibular & balance specialist? I can help you find one in your area.Ā 


   
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(@dizzycat)
Active Member
Joined: 2 years ago
Posts: 6
Topic starter  

I have seen a neurologist and ENT, not a vestibular and balance specialist. I'm in the UK, not sure what to search for?


   
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 Sand
(@sandstorm)
Joined: 3 years ago
Posts: 37
 

@dizzycat Where are you located in the UK? What towns are nearby? šŸ™‚Ā 

Ā 


   
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(@dizzycat)
Active Member
Joined: 2 years ago
Posts: 6
Topic starter  

@sandstorm Iā€™m between Bristol and Gloucester


   
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 Sand
(@sandstorm)
Joined: 3 years ago
Posts: 37
 

@dizzycat This facility sounds amazing! Please contact them and let me know how it goes. https://www.bristolneurophysio.co.uk/services/vestibular-rehabilitation


   
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(@mikeb)
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Joined: 2 years ago
Posts: 1
 

Hello DizzyCat.Ā  Please follow up on your experience with the vestibular specialist.Ā  I am new here and read your story and there are so many similarities.Ā  Would like to know how it goes and if you find relief.Ā  I've been dealing with what sounds like 3PD as well for probably 10 years, with similar events detailed in your story.

For me, things took a turn for the proverbial worse this past December.Ā  Thought it was a vertigo episode, falling out of my chair as I tried to secure myself on the floor. After an ER visit, CT Scan, MRI, got the all clear on the brain.Ā  Ever since then, dizzy most of the day doing daily activities.Ā  After an ENT visit, doc said I had a "Drop Attack" and suspects Menieres Disease, based on other symptoms like Tinnitus and pressure in ears for past few years.Ā  Tried a diuretic and diet change with no relief.Ā  So, waiting for a hearing test in a couple weeks and a VNG balance test in May to get closer to a diagnosis.Ā  While my Neurologist last week thinks it was a Focal Seizure and scoffed at a MD diagnosis.Ā  Really doesn't explain the chronic dizziness and feeling unbalanced.Ā  Well, it's definitely a struggle, especially when it's a guessing game right now.

Thanks for sharing your story.Ā  Hope you find some relief soon and post again if you visit the nearby clinic that specializes in vestibular and balance therapy.Ā  I'll be reaching out to a clinic myself in hopes of of figuring this out.Ā  I'm sure PTs who specialize in these disorders will have a wealth of experience treating patients with similar symptoms and give their honest opinion on what you or I might be looking at.

Hang in there.Ā  I'm glad we have a place to turn to and know we aren't alone.

Mike

Ā 


   
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(@dizzycat)
Active Member
Joined: 2 years ago
Posts: 6
Topic starter  

@sandstorm thank you, I will see what they can do!


   
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 Sand
(@sandstorm)
Joined: 3 years ago
Posts: 37
 

@dizzycat Wonderful!!!!Ā 


   
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