Unexplained Vertigo : Hi .I have Lupus and MS. I... - LUPUS UK

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Unexplained Vertigo

jahlioness profile image
11 Replies

Hi .I have Lupus and MS. I only take hydroxychlorequin .but since the end of july beginning of August i have been suffering with vertigo, its been over 6 weeks now and its a real bugger to shift.

Does anyone know if its Autoimmune related and how can i get rid once and for all its horrible, i couldn't dive..

The summer holidays were not fun .

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11 Replies
KnitSewPurl profile image
KnitSewPurl

Hi,I had vertigo in my very stages of my lupus. Have you had your hearing checked?

Get that checked to make sure it is effected . If all if ok get your GP to prescribe meds to help with the vertigo to help with the stabilisation of the inner ear. So see a doctor or someone to discuss about it.

Because I did . It took a while to clear up. Honestly I cannot remember because it was a long time ago. I remember the vertigo because it happened when all of us were at a swimming pool when it happened and I nearly drowned. I have gone back to pools since no further vertigo

KnitSewPurl profile image
KnitSewPurl

Btw I have had SLE over 12 years now so over that span of 12 years I have had all sorts of weird stuff popping up . And also made the floor in the room distorted worst if you have squared flooring. I also had massive arm cold swelling only 1 arm left & Blue fingers these 2 correlate. They always come together. They put it down to SLE. They did all the test in the world and came up with nothing!!

AgedCrone profile image
AgedCrone in reply toKnitSewPurl

Could simply be wax in your ears, or Labrynthitis….a virus that attacks ears & causes vertigo…do see your doctor. ..it,s easily treated.

KnitSewPurl profile image
KnitSewPurl in reply toAgedCrone

Yes , true but mine was none of the above, they treated me with meds checked my ears as I am already deaf in one ear and bearly hear in the other with a few months or so it cleared up. So they took quite alot of precautions with my ears. Had a hearing done as well to make sure to there was no depreciation or fluid in my inner ear. All was clear.

AgedCrone profile image
AgedCrone in reply toKnitSewPurl

Have you still got the vertigo? If you have…maybe ask for a head/neck MRI?

KnitSewPurl profile image
KnitSewPurl in reply toAgedCrone

Nope not any more vertigo. all cleared up mysteriously as it came and went. So I stopped the meds. Think it lasted about less than a year most prob 6-8 months the most. But the effects did lessen. Yes it all appeared during my worst times of my SLE and my severe migraines as well the peak of it . So, been smooth sailing so far since cutting off gluten oats ,barley recently famous last words 😅🤣...

AgedCrone profile image
AgedCrone in reply toKnitSewPurl

Very glad it has passed off

Just FYI….Have you heard of the new drug for Migraine? I get migraine with aura but no pain which can cause vertigo…but it was a nightmare to diagnose …this new drug is apparently suitable for both types.

“Rimegepant has been recommended for adults with .migraine who cannot take other medicines or do not respond to them.”

Definitely worth looking at.

KnitSewPurl profile image
KnitSewPurl in reply toAgedCrone

My migraines has been stable now very since I have been put on Hydroxchoriquine. It creased, also on Topiramate (on quite a high dose) . I have tried to lower my Top dose tapering it but it starts to triggering my migraines so I ended up keeping it at my stable dose and kept my hydrocortisone at my stable dose as well . So far keeping my SLE stable and migraines stable I get the flare up and migraines together now so I know when they come on

honeybug profile image
honeybug

Hi jahlioness 😊🌿🌸🦋

I suspect I have lupus …I know I have Sjogrens Syndrome from 8 Aunts that had both.

I have bilateral Menieres Disease. I’ve had vertigo for years at a time. Crawling to loo ‘cause I couldn’t walk. I have it in my sleep and awaken with it.

There are many reasons for vertigo:

allergies salt sensitivity and fluid retention in inner ear displacement of stones from their normal location

to mention a few causes.

There is a medication called Antivert that doesn’t help according to my top ENT specialist.

Falling can dislodge the ear stones and a special maneuver called Eply is performed by an ENT to reset them. Since mine were dislodged bilaterally with every Eply maneuver one side reset but would dislodge when the other side was maneuvered. I struggled for a couple of years trying to have them both reset and stay put.

Eating excess salt/sodium can trigger fluid retention in the inner ear causing vertigo. Usually salt/sodium restriction plus diuretics are used to help prevent flare ups.

Sometimes idiopathic (unknown reason) triggers occur.

Food allergies (corn especially) can trigger it.

Cervical (neck) slight dislocations (I have hyper mobile EDS ) can trigger it; I’m currently having flaring because my neck bones really slip out of alignment so badly.

My best advice is to see an ENT for a proper diagnosis and treatment. As you know this is no fun and it can be dangerous due to falling

My best wishes for your diagnosis and treatment soon.

Be careful and take care

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

KnitSewPurl profile image
KnitSewPurl in reply tohoneybug

Hi honey bug , yes that is what they diagnosis me with meniere's but mine seem to miraculous disappeared as it came. So I put it down to one of Lupus SLE things. 😊

honeybug profile image
honeybug in reply toKnitSewPurl

I’m so happy for you. Hopefully it flares only sporadically if at all.

Love and prayers

EJ 🤗♥️🥰🕊🙏🌿🌸🦋

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