Mal de Debarquement

[JD138]

I have been suffering from this horrible balance problem for over 10 years. Is there anyone who has this and Hashimoto's?

[Marz]

I do not suffer but looking on the internet there are references and links about the condition. Have you had a search ? It is described as a syndrome so Hashimotos could be involved. There is also Cerebellar Ataxia which can be linked to Hashimotos too ...

Hopefully you are being well treated for your Hashimotos and have optimal results including B12 - Folate - Ferritin - VitD. Where is your B12 level ?

Are you gluten free ?

[JD138 in reply to Marz]

Thank you so much for replying. I have tried everything, nutritionist, acupuncture, chiropractor, and of course conventional ENT medicine. I'm just looking to see if there is anyone out there like me. There is a relatively new diagnosis of Autoimmune Inner Ear Disease. Seeing an ENT consultant to ask for steroids!

Thanks again.

[Contra21 in reply to JD138]

Have you seen a vestibular dr?

[Marz in reply to JD138]

So how are your latest thyroid results ? Vitamins and minerals ? Are you gluten free ? Hope you soon find answers - meanwhile check out the basics ... 🤔

[Batty1 in reply to JD138]

I was diagnoised with Meinere disease many years ago and about 6 months ago the ENT seems to think I have Autoimmune inner ear disease (both cause balance issues, tintinutis and at times deafness) had them all and I have no thyroid (I do think the thyroid has a role with ears) docs say no but they say no to everything.

When my tintinutis kicks up I take this vitamin called Lipo Flavonoid plus, it's not cheap and my not help you but I've had great luck with it.

[Marz]

Hope all goes well for your daughter ...

[Contra21]

Me!!! Is ot related? Do you get episodic vertigo and chronic tinnitus also?

[JD138 in reply to Contra21]

Thanks for replying. My ''dizziness'' is constant, and I too have tinnitus.

[Mionaonthehill in reply to JD138]

I also feel dizzy/ funny in head when walking at times plus I have tinnitus which I didn’t have a couple of years ago. Plus a lot of what I call ear wax but it may be a form of eczema.

[asiatic]

My husband suffers from vertigo so we are looking into this at the moment. He does not suffer from any thyroid problems but is very deficient in Vit. D which can cause calcium crystals to build up in the inner ear and cause vertigo. There are manoeuvres of the head that can be carried out to move these crystals and stop the dizziness.

[JD138 in reply to asiatic]

That sounds like BPPV. I hope he gets some help.

[humanbean in reply to asiatic]

For other readers...

He does not suffer from any thyroid problems but is very deficient in Vit. D which can cause calcium crystals to build up in the inner ear and cause vertigo. There are manoeuvres of the head that can be carried out to move these crystals and stop the dizziness.

The manoeuvre referred to is called the Epley Manoeuvre. You can see demonstations of it on Youtube. It can be done with a helper, but some people do it themselves without help - SeasideSusie did it by herself.

[asiatic in reply to humanbean]

As I said we are looking for more info on this. Do you know which specialist you need to be referred to. ENT, Neurology or Physio ?

[humanbean in reply to asiatic]

Sorry, I don't know. I was just posting to let people know the name of the manoeuvre you mentioned.

[SeasideSusie Remembering in reply to asiatic]

asiatic

Yes, I did the Epley Manoeuvre myself at home. There's lots of info on the internet and many YouTube videos, I can't remember which one I used but this one looks familiar and it's always worth a try, no harm done if it doesn't work. It took me 3 days, I did the manoeuvre once a day, the first two days nothing happened, on the third day it worked:

youtube.com/watch?v=9SLm76j...(Not working as expected?)

[asiatic in reply to SeasideSusie]

Thanks for the info. I am a little wary of doing it ourselves as my husband's situation is complex as the vertigo caused a recent fall resulting in among other things a subarachnoid haemmorahge. Just like with thyroid getting a diagnosis and correct treatment from GP is challenging.

[SeasideSusie Remembering in reply to asiatic]

Well, if you watch the video you'll see there's not much too it other than moving your head, but of course it's up to you to make the decision.

[asiatic in reply to SeasideSusie]

"it's up to you to make the decision "

If only.....

Unfortunately it's my husband's decision and he doesn't have my try and see attitude !

Thanks for the info. Hope I can persuade him to give it a go.

[SeasideSusie Remembering in reply to asiatic]

It was a collective "you"

[JD138 in reply to asiatic]

I saw a specialist audiologist who gave me my diagnosis and then an ENT consultant doctor.

[greygoose]

I got it really badly when my vit B12 was really low. And no doctors seemed to know the connection! I had to find it out for myself. So, if you haven't had your B12 and folate tested, get it done as soon as possible.

[JD138 in reply to greygoose]

Thanks for the reply. I'll perhaps try again to get my GP to try this with me.

[greygoose in reply to JD138]

Try what? B12? You absolutely have to have your B12 and folate tested before you supplement. You need a base-line. And, should you have Pernicious Anemia - which is pretty likely given that you have Hashi's - you need to know, and taking B12 supplements before testing will skew the results. If you have PA, then you need B12 shots for life.

[Wwerty]

I had a spell of vertigo or so I was told, I felt like I was swaying side to side like being on a boat and when I walked I felt like I was walking on a boat, gp rolled her eyes and did bloods which showed under active thyroid another blood showed antibodies, I’ve read somewhere that a swaying feeling can be a symptom of thyroid antibodies, 6 weeks after levothyroxine it stopped, it can be a b12 thing as well apparently, I was fine when just sat watching tv or in a car

[JD138]

Thanks for your reply.

[Mowgyi]

I have this. Look into pppd and tms (Sarno. Search TMS wiki).