I would agree with your neuro about the diet and supplements part actually. As I mentioned previously on this thread, I cannot understand how eating gherkins or chocolate can make you dizzy. I did the HYH diet earlier in the year and ditched it after 3 weeks because I think its actually a very unhealthy diet. If you say youāre triggered by migraine type triggers such as food, caffeine or temperature changes then Iād say yours is closer to MAV than PPPD. You donāt necessarily need to have vertigo to have MAV.
In terms of medical research, maybe PPPD is a step in the right direction but probably not the end result. Maybe PPPD is ultimately just a different variant of MAV.
Yup, I think Iām hovering between migraine and PPPD, and itās not quite clear what it is. Hence Iāve been diagnosed with both, and Iām unhappy with both doctors and both diagnoses!
Also I agree that the diet is very unhealthy, and Iāve cut out only some things that are really bad (chocolate, nuts), but Iām not cutting everything out, itās ridiculous.
Iām not sure why people have this opinion, even using the word āveryā? Anyways, we have a separate thread on that topic that Helen and I have been hashing out, maybe you can post your reasons there?
Bingo Helen, as my forehead muscles twitch while I type and feel pressure above my left eyeā¦ for the 1,423rd day in a rowā¦ And there are clear cycles mind you: morning afternoon and evening. And they are quite mild now but they are still felt.
Appreciate the discussion. I may well have had PPPD as my symptoms fit (never had vertigo) but its just not as helpful to think about it for my treatment as I continue to have so much obvious head pressure symptoms daily.
Hi everyone! Hope youāre all well. Crazy to think itās been circa 6 months since I lasted posted here. Thought Iād check-in the provide an update:
The constant dizziness I was experiencing vanished around November/December time, and has not returned. Seems evident to me that MAV can have different phases. Perhaps I was experiencing a one-off phase of PPPD, or perhaps it will return in future, who knows. But glad to say its been gone for months;
I have been feeling 90-95% most days over the last 4-6 weeks, despite having crazy stress due to the pandemic and my job. It feels quite bizarre and surreal at the same time;
Iāve been moved into the care of yet another neurologist. However this time, I think the doctor is a genuine expert on this disorder (Dr Kaski) and he is actively conducting research & publishing alot of scientific papers on vestibular disorders. In my first appointment, he told me he 100% understands what I have, that its very common and ultimately treatable. He told me to avoid antidepressants (as they are not a cure) and wants me to start Cognitive Physical Therapy at Queens Square (via NHS) - its not VRT or CBT, but maybe a mixture of both? Iām not sure, as I couldnt find much information about it online. I donāt know when my first session is (it might take a while as its NHS) but Iām super excited to finally receive targeted/expert care;
Iām having an MRI next month on my spine. Because I get tingling in my feet, the neuro wants to rule out anything spine related. Iām 99% confident that it flares up when my vestibular system flares up. Apparently its not uncommon for people with vestibular disorders to get feet symptoms, however because it is not something that is super common, they want to check it out.
My 2 year vestibular anniversary is next month. Iāve gone from not being able to walk, to being able to do absolutely everything again and even playing football! And thankfully, without the aid of antidepressants. Stay positive folks!
If anyone has any questions or wants to talk during this difficult time, feel free to ping me. Stay safe
btw, since my grumpiness above, Iāve changed my mind about PPPD having done a little more reading.
It very well could be that your stress response to acute vestibular issues can cause an ongoing chronic syndrome. In addition I see there is real science that suggest stress might have caused the issue in the first place ā¦
In reponse to this I believe this big time. I had my VM under control then I had a big illness and now my dizziness is back chronic because of stress and trauma and it feels different from VM.
@turnitaround@Lunapalm - I can definetely confirm with first hand experience that the dizziness I had was episodic. In my case the episode lasted 2-3 months.
The real question is, was the dizziness just ānormalā dizziness as a byproduct of MAV or should it go further and actually be classified as PPPD? Iām inclined to think genuine PPPD would be almost constant and continuous dizziness, for several months or years. I think even medical practioners are divided on PPPD.
In some way PPPD feels like another waste basket diagnosis to me. I noticed that PPPD never seems to be divided into "acuteā or āchronicā either. In a doctors eyes, you either have it or you dont. And doctors prescribe antidepressants way too fast.
To answer your question directly, Iām inclined to say youāre obviously having a flare up. As we know, vestibular conditions can cause random dizziness. Iād say give it some time, dont rush to any conclusions and stay off medication if possible.
If its been constant for 6 months, there may be a case for PPPD. But it depends on so many factors. Take the right supplements and give it more time. Personally, I found 600mg magnesium glycinate daily super helpful.
The last doctor I saw said heās against labelling vestibular conditions, because they cause so many different symptoms and constantly evolve.
Iām taking supplements too but need to give them more time. It is way better than it was 6 months ago because they gave me a low dose of klonopin and I think that sped up recovery but Iām still dizzy to some extent everyday.
A little update from me. Iāve since had a bunch of follow-up tests (MRI, nerve study & bloods) and theyāve all come out clear. Iāve grown tired and weary of the endless appointments and poor NHS treatment, so iāve decided to accept my diagnosis of VM for the time-being. I will seek an opinion overseas, once Covid permits.
If by definition I actually do suffer from āmigraineā then I think i suffer from it pretty badly, as I suffer symptoms on a daily basis. Some days are better than others, and although the severity of my symptoms are significantly better compared to 1-2 years ago, ultimately they are still persistent. Today for example perfectly sums up my normal day: strained & slightly blurry eyes when im outside, a tiny bit off balance, brain fog, light sensitivity, spaced out and a slightly worse memory.
I feel very much at a crossroads now, as Iāve definitely a hit plateau and Iāve been able to avoid anti-depressants until now. For the time being, going to keep trying natural methods a little while longer and then re-assess. I read Dr Behās book again and tried to pick out any additional things I can implement. Going to add a daily B12 supplement, go on a stricter diet, try to use sunglasses more often outside, and maybe try a sport thatās heavy on hand-eye coordination such as table tennis (once Covid permits). Iām also doing CBT at the moment with a therapist, but I find it utterly useless.
Given the hard plateau Iāve hit, I pretty much feel now that itās biologically impossible to fix the VM by pure natural means, which I find very depressing. I guess its just bad luck in the genetic lottery.
The endless appointments are exhausting and frustrating, and I think youāre very sensible in just accepting that you have āmigraineā (whatever that means) and carrying on with normal life as best you can.
One thing Iāve learned from the literature on PPPD is that the hyper-vigilance (the obsessive self-monitoring, listing how you feel, describing symptoms to doctors, clasping for diagnoses that fit) in a sense keeps the symptoms front-and-centre, and so strengthens their hold on you. The weird paradox seems to be that itās precisely when you throw your hands up in the air and go āIāve got migraine, thereās nothing I can do, I just need to get on with lifeā that healing can potentially begin, that the sensations can begin gradually to dissolve into the backgroundā¦
So your weariness and frustration could potentially work in your favour! Go out and live, and be really positive, and see what happens over the coming year.
Distraction is definitely useful but symptoms are symptoms and they will annoy you from time to time anyway, however āused to themā you get. What certainly does tend to happen is you get less anxious about them too which helps a lot. And the bigger the range of symptoms youāve had the fewer types there are left to freak you out when a new variant turns up.
Completely agree. When I had PPPD, after a while part of me ālet goā and accepted it. Subsequently, my PPPD vanished. I dont know if thats part of the reason why it went, but I would like to think so!
Absolutely. The anxiety I used to have with respect to my symptoms is 100% gone now, and things have improved. Iām just left with what I describe as a ālow grade feverā - persistent low grade symptoms which impact my daily life slightly, but not massively. Trying to stay positive at all times of course, but itsās hard to distract yourself when it lingers on a daily basis, I guess.
The Covid pandemic has helped in many ways, but I think overall it has probably hindered my healing. Being indoors 24/7 is not good for the vision/vestibular complex and not having access to gyms and sports centres for regular rehab & mindfulness has hindered things further I feel.
