Persistant Postural Perception disorder

[patzi2021]

Hi, I have been diagnosed with PPPD. Is there any connection with my Hypothothyroid condition.

Is there a PPPD group please?

[Jaydee1507 Administrator]

Did you ever see a private Endo?

Did you get your full thyroid levels tested to include TSH, FT4 & FT3? Also full vitamin testing - ferritin, folate, B12 & D3?

I don't know of a group for this but geting your thyroid and vitamin numbers more optimal may well help you.

Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

[patzi2021 in reply to Jaydee1507]

thank you for your reply. No I have not seen a private Endo and would appreciate any suggestions. I had all the thyroid blood tests done at Blue Horizon but only vit D on 05/10/15. Everything was OK. Thanks

[Jaydee1507 Administrator in reply to patzi2021]

If you would like suggestions then do start a new post stating the general area/county you live in. The post will be locked as we are not allowed to name doctors in the group and people will then to send you a personal message with any suggestions they have.

You can also email [e-mail] for a list af Endo's.

You had vitamin testing in 2015? A more recent test would be more helpful. We should test at least yearly. Do share your results with ranges for members to make suggestions.

[RedApple Administrator]

Some useful information about PPPD here on the Menieres website menieres.org.uk/information...

They also have help support information here menieres.org.uk/information...

[patzi2021 in reply to RedApple]

Many thanks for the link which I will follow up

[Sparklingsunshine]

There's a group I belong to that covers chronic dizziness, vestibular migraine and PPPD. Called Mvertigo. org. I found it super helpful after my symptoms started last year. Who diagnosed you and have they discussed any treatment options?

[patzi2021 in reply to Sparklingsunshine]

Many thanks for recommendation which I will certainly loook into.

I was diagnosed with PPPD by UCHL ENT and was given vestibular exercises and specialist

vestibular talk therapy by phone (about 8 sessions). Thanks again

[Sparklingsunshine in reply to patzi2021]

The other treatment option is a serotonin based antidepressant in a low dose, like an SSRI, the anxiety and dizziness parts of the brain are very closely related, the more anxious you are the more dizzy you feel, and conversely dizziness and feeling unbalanced naturally makes you dizzy.

My story is I had a migraine April 2022, which I have regularly, thought nothing of it until the next day I was walking home when I felt off, the floor felt like a trampoline, it was very odd and unsettling. Going in the supermarket was a nightmare. I felt so uncordinated. I can liken it to feeling drunk but I dont drink. I thought it was just a residue of the migraine and hoped it would go away. Brain fog, fatigue, neck pain, ear pain/pressure can be other symptoms.

Sadly it didnt. I've had brain scans, nerve conduction studies, seen a neurologist and ENT who concluded my regular migraines have now morphed into Vestibular migraine. It has a lot of similarity to PPPD, bright lights, moving screens, busy environments, even patterned floors can set you off. I feel worse when walking, perfectly fine when sitting or lying down.

It was suggested I use a migraine preventative to see if preventing my migraines would help with the 24/7 imbalance. After several attempts I finally found one that helps and I can tolerate. I take Venlafaxine, which has helped a lot. I'm no longer triggered by going in shops, its calmed down the visual vertigo and I notice the rocking floor sensation much less. I'm not back to normal but much improved to how I was last year. Interestingly I've had no migraines since January, since I started on this medication.

PPPD is normally triggered by an actual vestibular event, like labrynthitis, concussion, vestibular neuritis, vestibular migraine. Its considered a maladaption of the brain to readjust after the initial problem has resolved. I've also done VRT but am not convinced its helped.

Another thing you can try are watching optokinetic videos on Youtube, basically moving black and white patterned shapes, which helps build up your tolerance. I would suggest getting out for a walk as often as you are able. I know when you feel dizzy its the last thing you want to do but challenging yourself to do the things that are hard will help with recovery. My overwhelming feeling when my symptoms were at their worst was to slob about on the sofa, as thats where I felt normal and safe, but I know avoidant behaviour is very bad for conditions like this. I had to force myself to do things that made my dizziness worse.

PPPD is often more common in people with migraine or family history of migraine. Leading some researchers to believe its a subset or variation of vestibular migraine as the symptoms are so similar. Do you have any such history of migraines? If you wany any more info or to chat please let me know.

[Daddy2sweet in reply to Sparklingsunshine]

thanks for your comments. I’ve been living with this dizziness for nearly a year, can’t go back to working with SpEd high school students as a Behavior Coach. (RBT) I loved that job.

Your words are a blessing to help me explain PPPD to my wife and family and friends. I do appreciate any help I can get.

My demeanor is sweet and kindhearted, I have hid my emotions, anger and anxiety not showing how I really feel. I want to tell and yell everything I feel so others can be quieter, turn down the noise and shut the friends up. And at the same time hide and not be seem walking in a zigzag direction to get to a store or out of a parking garage because I can’t walk down an inclined driveway or ramp. I hold my wife’s arm or sleeves for balance and worries her walking ahead of me telling her to wait come back and get me standing there afraid to walk or fall down. Again thank goodness for this site!

[Batty1]

I was diagnosed with Meinere’s disease many years ago my vertigo was so bad I would randomly pass out or have panic attacks that would leave me sitting on the side of the road unable to drive …. 7 years ago I was diagnosed with thyroid cancer had thyroid removed and all my issues with panic attacks and passing out just disappeared Im definitely convinced their is a relationship between thyroid and vertigo. This is just my opinion and my doctors don’t share my opinion.

[patzi2021 in reply to Batty1]

Hi Batty1, many thanks for your comments. I will take it on board