fnd & pppd symptoms. How do you cope with?

[FNDandDizzy]

I have fnd and pppd. I struggle with dizziness, balance issues, and feeling off-balance. Some days are really tough. How do you manage these symptoms? Any tips that help?

[210272]

PPPD is a conceptual framework/human construct and some doctors think patients should reject it and/or reject the notion that it is a FND Subset. The people who constructed it (who are all heavily invested in FND) cut corners when they wrote the diagnostic criteria (one of the papers cited is from the 1830s and is over 400 pages long - Jon Stone told me 'they could have used a better one' so I wonder why they didn't) and there are many controversies about it, not least that patients didn't understand or use the nomenclature and it was thought that simplifying it could, potentially, produce better outcomes. This didn't happen. It should not be used as a gateway diagnosis to a full blown FND diagnosis but unfortunately that's happening all too frequently. There are many conditions that can result in motion sensations and migraine is a common one so if you have not already had an assessment for migraine (specifically vestibular migraine) I would ask for one, toot sweet

What was the basis for your FND dx? IE what were the 'ruling in' signs used to make this diagnosis? If you have not been told what the ruling in signs are I would ask for a second opinion about the FND diagnosis.

Symptom management will vary from person to person; I think physical therapy can help some people with these symptoms, as can gradual re-exposure to the environments that can provoke symptoms (eg supermarkets etc). The medication review for PPPD is inconclusive yet a lot of people are being over medicated and under supported. Tim Hain told me that some surgically trained ENTs in the States are giving this diagnosis with the sole purpose of discouraging further contact from their patients which is reminiscent of when people were diagnosed with FND and then promptly discharged from neurology. I was sent a whole bunch of cautionary tweets about it (most of which seem to have been ignored) which I sent on to Tim Hain but I don't know if he's had the chance to do anything with them, yet.

VeDA's balance awareness week starts tomorrow and PPPD (which is being massively over promoted so is also being over diagnosed) will be one of the topics covered. The old PPPD and Life group was good (it closed, unfortunately) but the moderators and admins of the newer groups do not seem to have any understanding of the background to how the PPPD diagnosis came into being.

I am calling for a controversies paper about it since if the concerns about it are not brought to light they will be swept under the carpet and could continue to trip us up for decades to come.

Out of interest, did whoever diagnosed you with PPPD take a full medical history and talk you through the 'red flags for when it's not PPPD'?

[MONIREN]

I struggled with vertigo for years, new physio quickly found it was from my neck. Gentle neck exercises and change in pillow has helped a lot. It's not a quick fix, but certainly cut down my episodes. Ask around, not all physiotherapists know how to help. Hope this helps. Take care. Moni

[FNDandDizzy in reply to MONIREN]

Thanks for sharing, Moni! That’s great to hear physio helped you. I’ve been working on different approaches too, and it’s always good to hear what has worked for others. Take care!

[210272]

Just reposted this paper in this Hub and it might be of interest to you, too. I thought the authors' comments about FND were both timely and apt:

Vestibular migraine: an update

Villar-Martinez, Maria D.a; Goadsby, Peter J.a,b

Author Information

Current Opinion in Neurology 37(3) 252-263, June 2024. | DOI: 10.1097/WCO.0000000000001257

[FNDandDizzy in reply to 210272]

Thanks for sharing! I’ll check it out.

[FNDandDizzy in reply to 210272]

Thank you for sharing this paper. I’ll take a look at it.

[210272 in reply to FNDandDizzy]

You're welcome

[Bee-bop]

Hi there,

In the UK the treatment for PPPD is physiotherapy and cognitive behavioural therapy. This works on retraining the brain. I have a friend with FND and PPPD who is no longer feeling the dizziness as before. I myself have reoccurring dizziness that has no diagnosis and I believe is caused by certain sounds (cinema, TV, crowds, music can set it off) or changing positions sometimes. ENT ran some tests but they didn't cause the severe dizziness on the day. The medication I was going to trial has milk in it in the form of lactose that I can't take so, I don't have anything to help but trying to balance myself by laying down or putting my finger in my ear. Years ago when it had me falling to one side when walking, the Dr saw the only thing coming back on blood tests was low vitamin B12. Once I took it this bout of dizziness improved. It might be worth checking out if you have a deficiency that isn't helping your symptoms.

[FNDandDizzy in reply to Bee-bop]

Thanks for sharing your experience. I’ve also been told that physiotherapy and CBT can help with PPPD, and I’ve been working on gradual exposure and mindfulness, which seem to make a difference for me. It’s interesting how different triggers affect people—sound sensitivity must be really challenging to manage. I appreciate the suggestion about vitamin B12; I’ll keep that in mind. I hope you find something that helps with your dizziness soon!

[Bee-bop in reply to FNDandDizzy]

Thank you. I hope you get some help with yours soon too.

[FNDandDizzy in reply to Bee-bop]

Thank you !! I hope so

[kev60]

Hi, I was diagnosed in 2019 with FND, it took a lot of tests from various departments neurology, ENT (that was 8hrs) ruled out inner ear but found if I move my head to quick I become dizzy and off balance. I had a trial for FND which was neuro-physio and it was they who suggested FND and the neurologist agreed and then I was discharged. Now I have more bad days than good but you have to live for the good days. I walk like I am drunk and need my wife with me when out as it can be dangerous (I staggered into the road once had a near miss, and nearly fell off a platform at the station but my wife pulled me back). Sorry I don’t know PPPD, I have also developed functional tremor which they thought was Parkinson’s but test results showed it was probably FND related. I can no longer work as I lossed a year of memory and forgot where I worked , also walking,talking and memory are an issue. I do what I can on the good days but every person I have met with FND is different, some can’t talk some in wheelchairs you have to find what works for you. Good luck . Kevin

[FNDandDizzy in reply to kev60]

Thanks for your thoughts. I was diagnosed with FND and PPPD after thorough assessments by both a neurologist and a neuropsychiatrist. My diagnosis was based on clinical signs, history, and symptom patterns. I’ve explored various treatments, and what has helped me most is a combination of therapy, mindfulness, gradual exposure, and lifestyle adjustments. I agree that symptom management varies for everyone, and I appreciate different perspectives on the diagnosis.