Symptoms of PPPD

[GrEeNbEeNs]

Hi I have been diagnosed with PPPD the dizziness is driving me crazy and my memory and concentration has got worse,what I was wanting to know is if anybody who has suffered from this ever feel like they have got no patients and a bit aggressive.I feel as though i,m going mad I didn't feel like this until I took PPPD

[210272]

As far as I can tell the symptoms associated with the PPPD label (which a lot of doctors don't think is a viable diagnosis because it is just a descriptive term - and apparently they are planning to drop the 'postural' part) often come hand in hand with vestibular migraine so irritability and loss of patience may be part of that. Here's a good paper about Vestibular Migraine which mentions PPPD and I thought the authors' comments about FND were timely and apt.

DOI: 10.1097/WCO.0000000000001257 (you may have to copy and paste the doi to find the paper)

The cog fog is horrible, I know, and I found it helpful to understand why it happens (and have my doctor understand that, too) and there is good information out there about cognitive vestibular interactions (eg on VeDA's site). Changing medications or taking new ones can also contribute to cog fog so it's worth discussing this with your doctor if that's the case, for you.

[Lady4]

Your just getting distressed and caught in a loop.

Try not to be too hard on yourself, we all forget things and FND symptoms can be overwhelming at times.

[Shimmyaway]

I expect you have tried eye exercises? ..if not try the site below...no experience myself of this problem.

thevertigotherapist.com/ver...

[GrEeNbEeNs in reply to Shimmyaway]

Thanks to everyone that replied to my post about PPPD i'm going to try the exercises that were suggested,fingers crossed.

[Cornelia35 in reply to GrEeNbEeNs]

hi ,am so sorry you have to go through this. I have it since 2022. Watch some videos of the Steady coach on youtube. 🙏🏻

[Sparklingsunshine in reply to GrEeNbEeNs]

I had a suden balance loss after a migraine, my symptoms certainly suggest Vestibular Migraine but can also cover PPPD. Unfotunately there are a lot of vestibular disorders that share similar symptoms so getting to the bottom of it is tough. After 2.5 years of suffering I'm now seeing a balance specialist privately as I have no faith in NHS.

Its important other ear/ vestibular disorders are ruled out before 3PD is confirmed. So you should ask to see ENT/ Neuro so they can run tests. 3PD remains controversial as a diagnosis as its seen as psychosomatic in origin. In some cases 3PD has responded to SSRI/ SNRI meds. I wouldcertainly also look at vestibular pysio exercise as these can be very hepful. Ether Google it or check out Youtube for free demonstrations.

Was here anything that trigered your symptoms? Ear infection, migraine ?

[GrEeNbEeNs in reply to Sparklingsunshine]

I have now been reffered to ENT but as usual I had to fight for it because of everything getting put down to FND I told the doctor straight that I was fedup being told everything and that there could be something else going on so I want it checked out.

[Sparklingsunshine in reply to GrEeNbEeNs]

Yes FND can follow you around for the rest of your life and will cause problems with diagnosing and treating other conditions. It will mean certain medics wont take you seriously and everything gets blamed on it. Which is why its so important to make sure it definitely is FND and not something else. Imo FND is just a label for something they havent found the answer to yet.

[GrEeNbEeNs in reply to Sparklingsunshine]

I don't mind if i'm being classed as a nutter because I am one LOL I've had a hard life I'm 60 and been classed as being crazy since being diagnosed 9 years ago so another few years won't kill me, but then again you never know if the doc's are not interested to see if it could be something other than FND then it could be dangerous. The doctors and neurologist would drive you crazy with the amount of shit they come away with.

[Inapickle121]

I have, but i think out of exasperation of being worn down by the symptoms and them dragging on and on. In the end I found researching best /newest approaches to treating concussion and BPPV and adopting those worked well for me. Not pleasant or easy but worked for me in the end. Essentially 'resting' is the worst thing to do and pushing it is the best way to get your brain to work with your eyes/ears to relearn not to work out of sync (poor explanation probably). Anyway with concussion it recommended working for periods at 70-80% of your VO2 Max and then straight after going into postural exercises/ eye movement exercises similar to the Epley manouvres etc - ie things that make you stand up, lie down, turning your head, rolling over etc. I felt so sick and faint at times but kept perservering. I did tonnes of yoga which I found really hard as it alwasy set off symptoms but I kept doing it, accepting the rollercoaster and or the feeling I was going to pass out, recovering/regrouping and then going again. One day I woke up and I realised i'd cracked it and it was gone. Now if it comes back I go back to doing all that stuff again. Other things that can help is wearing compression wear and using a laser to make your eyes track movements.