Put PPPD in the search bar here at mvertigo.
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Hi, did you think it was PPPD or was it what your doctor thinked ? I went to otolaryngologists, psychiatrists, neurologists… to finally be diagnosed with VM and PPPD. But the fact is that I had more VM attacks before and slowly only the dizziness and unsteadiness 24/7 remained… And I also have all the symptômes described in PPPD (dizziness 24/7, worsen in groceries, with noise…)
Currently, I’m on Lamotrigine because my neurologist thought it could do something on my migraines but it did nothing so he told me to stop it now.
Also, what is MAV please ? I also didn’t understand the difference between DO and MD, and sorry if something I wrote was not clear I’m French and my English is not perfect 
MAV is a subset of VM technically. In practical terms treat it as the same thing. PPPD and VM share many symptoms but are a bit different. I will bump a topic up on PPPD so you can compare to your symptoms but really a medical professional needs to give you a better idea of what you are suffering with because treatments can vary alot. IMO it is just a complete cop out to tell somebody that they have VM and PPPD. Any professional doing that should be ashamed of themselves. There are many other medicines you could try if that is your chosen route.@pugg is in the US and will get back to you later I guess with that query but medical terms and indeed systems and terms vary country to country.
Thank you very much I’m looking forward to see it. In fact I live in France and here there are very few doctors who know these conditions. I went to Luxembourg to find a neurologist after seeing a publication he wrote about pppd, but he told me that the main place of research is the Mayo Clinic and that I should try to mail Dr Staab who is number one on this topic. I can’t go to the US to see professionals with my vertigo so I’m trying to discuss with people living there to find some information.
Absolute nonsense. You can find experts in the UK. Nowhere near as far to travel. Try London. The US may well be world leaders. I wouldn’t be surprised but no need to even try travelling so far. Motion intolerance is part of VM. I would be the same. I struggled with A very few miles to my first neurologist appointment. A car journey of 40 minutes maybe. You can read worldwide from the comfort of home. Beauty of The Internet. Should be no need.
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Agree with Helen. No benefit going that far.
Major cities in Europe will surely have good balance doctors.
London definitely has. Can list you off three to consider.
Diagnosis might be tweaked but treatment is in any case tailored to the individual. Available protocols very international now.
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MAV is Migraine Associated Vertigo. My doctor (DO is Doctor of Osteopathy, or osteopath and contrary to the skepticism shown them, the degree requires more medical training than an MD… I have always preferred osteopaths to MD’s so I may be biased) was open to the possibility of migraine but we still went thru all the tests - ENT asked for an MRI which showed nothing, and the subsequent blood tests and food/allergy tests also did not reveal anything.
And yes, I had all the symptoms including aura, tinnitus (with dramatic hearing loss in the left ear), anxiety (especially in large spaces like grocery stores and malls) and varying degrees of disequilibrium (i did not experience the spinning of vertigo, rather a bizarre imbalance… It felt like I was balancing a brick on my nose. MY doctor was adamant that most tinnitus results from congestion and so that’s where I started to look… how to relieve the sudden and non-allergic congestion which came on with everthing else. When I read the report about FDA approving a capsaicin nasal spray I did not wait or ask for a prescription. I found the “Sinus Plumber” and it works for me.
Sending good vibes and hopes that you can find some help. It was the most distressing ailment I have ever experienced and know what you are going through Bon chance!
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And I don’t want to get too “new age” but I also used acupressure, specifically the pressure point located in the middle of the thumb which, theoretically, stimulates the hypothalamus.
Yes I am reading every single publication about VM and PPPD, I also looked in the UK but the doctors I found also suggest SSRI for pppd and verapamil, lamotrigine etc… for VM. I went to Luxembourg because it’s 1h30 from where I live but I was also searching in the UK, I know the protocols are nearly the same everywhere but since Mayo Clinic is the leader in this research they could be experimenting something for people who don’t tolerate SSRI. I’m not saying I won’t go anywhere else but it’s been more than 10 specialists I went to so it’s becoming frustrating as either they didn’t know what it is, either they are convinced it’s PPPD AND VM. I read the last publications on the 2 conditions and I found my symptoms in both. My neurologist also said me that you are not always in only one clearly defined condition, sometimes it’s a little bit less obvious… that’s why I tried several types of medications, VRT, psychotherapy etc…
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That sinus plumber actually seems like it could work if it has hot peppers. Before getting on meds I noticed that a good dose of cayenne pepper knocked the nasal/head pressure down pretty good. Cayenne is used sometimes for pain relief.
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I have to say I think I’ve got my head around PPPD and believe that I may have it to some degree.
I’ve been monitoring myself during this recent, relatively mild but obvious relapse.
I’ve noticed, very acutely, this time around that my reaction to symptoms does seem to effect their escalation or otherwise.
Guys, keep cool and be bored by your symptoms and I think you will find you will improve quicker if you can achieve that?
That’s not to say anxiety is at the root cause of your condition but it’s clearly an exacerbator if not a complete vicious cycle.
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I always come back to Matthew Whaley’s paper on PPPD one quote from which promptly comes to mind
”It is suggested that dizziness becomes persistent when it is processed as a threat, and that it is maintained by: (1) unhelpful appraisals, (2) avoidance and safety behaviours, and (3) attentional strategies including selective attention to body sensations associated with dizziness.”
The ‘dizziness’ referred to is that Perceptual type as in Persistent postural-perceptual dizziness aka PPPD. Others interested in tackling that type could do a lot worse than read the tips on the last two pages on the article recently uploaded by @DizzyDame on her thread entitled
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Hi Louna ! Just stumbled upon your post.
I joined a group on Facebook for vestibular migraine, we created a list of doctors that know about VM and PPPD, here’s the link:
It’s super helpful.
You can DM me if you need anything,
Marianne 
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@Maina, I’d be happy to add this to #physicians-specialists-clinics-visits or even better, the site Wiki - we have a UK list already:
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That’s a brilliant idea! Can I send you these in word format? When I access my laptop I’ll do it!
Cheers
Marianne
Send them in pdf if you can. (Save or print to pdf from Word)
PM me
It’s already a Wiki so you can actually edit yourself but I may have more experience with formatting Markdown so you may prefer me to do it.
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Sitting up in bed first thing was been fraught with difficulty for me for a long time, need to come up slowly and in several stages. I always try to make a conscious effort to relax neck and shoulder muscles at each stage and that helps so much. With such history as mine there’s bound to be some residual anxiety there causing muscle tension. I accept that as inevitable. There must be some Association of Ideas. Obviously the more symptomatic I am the worse the reaction can be and as you say there can be lingering residual effects all day from that BPPV type stuff.
The point of this tale is the other morning I am lying dozing in bed and my Him Indoors who is an early riser rush’s into the bedroom shouting and bleeding having cut himself and in need of assistance. Totally distracted by his shout I sat bolt upright in one move in order to help out. Momentarily my head felt full and queer but I was so occupied I hardly noticed. And there were no lingering side effects.
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https://journals.sagepub.com/doi/abs/10.1177/00034894211007233
New journal article, April 2021: " Migraine Features in Patients with Persistent Postural-Perceptual Dizziness"
“a majority of patients with PPPD fulfill the criteria for migraine headache. A large proportion of PPPD patients who do not meet the full criteria for migraine headache still meet a majority of the migraine headache criteria. This suggests an association between the 2 conditions. PPPD may be a part of the spectrum of otologic migraine, where migraine manifests as otologic symptoms.”
“There was no significant difference between PPPD patients who fulfilled full migraine headache criteria and those who did not in sensitivity to light, sound, smells, weather changes, feelings of mental fog/confusion, and sinus pain/facial pressure.”
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The migraine empire strikes back. …
PPPD had the potential to realign medical attitudes to these conditions.
The risk is if migraine ideology continues to carry sway we will see a suboptimal evolution in treatment and they will continue to just throw ‘migraine’ pills at them instead of getting to the root causes.
Can someone ask these guys to explain the positional BPPV-like symptoms? You cannot turn migraine on and off like a tap just by turning your head! (Or everyone would be doing it 
)
I would also love them to look at the frequency of a patient’s migraines before acute vestibulopathy and after and then consider the likely direction of causation!
I for one had exactly one migraine my entire life (years) before my otological incident. I’ve had countless since.
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Exactly! I think the migraine neural pathways divert to weak areas in the ear.
Researchers need to research us! And aim to discover root cause/s. They’ll discover it in the ear I’m sure!
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