New to the forum, thought Iād introduce myself & share my story. 29yo male from London suffering from VM/PPPD hoping to share experiences and meeting new people
Background Timeline
October/December 2018 - couple bad life events left me with PTSD & Depression
February 2019 - got a flu (worst one in my life!)
March 2019 - Labyrinthitis; slowly recovered around June/July but not fully
July 2019 - diagnosed with VM by a private neurologist
August 2019 - suddenly developed Severe Anxiety, Panic Attacks & constant Dizziness
October 2019 - diagnosed with PPPD
November 2019 - Started Propanolol, Physiotheraphy & a migraine diet
January 2020 - current symptoms are more typical of VM attacks, not much improvement or hope
Symptoms
Pretty much everything imaginable - they seem to be continually changing and evolving over time, which is one thing I REALLY dont understand! The one that bugs me most is that my balance has never fully recovered yet, and Iām always a bit unsteady & off-balance
Medication/Supplements
Propanolol 120mg (helps stem panic attacks/anxiety & helps maybe 30-40% with VM symptoms)
300mg B2
300mg Coq10
4000IU Vitamin D
5% strength CBD Oil, 6 drops per day
Also to add, I tried Venlafaxine and Duloxetine - quit both within 2 days due to severe side effects (in both cases my legs were almost completely numb/verging on paralysis - could barely walk).
Summary
Iāve been battling this for 10 months now, whilst working flat-out in a high pressure finance job & commuting long distances. As a young man, my quality of life has been drastically impacted. My life revolves around work & seeing friends maybe once per month (which is invoking more depression). Most of the doctors Iāve seen (both NHS & Private) have been largely useless and Iām kinda stumped with what to do what next - I donāt even know what I have! I guess the next logical step is maybe to try Nortriptyline? My body seems to be ultra-sensitive to everything and anything, and Iām scared to death that Iāll never be able to stomach any of these medications. I also intend on picking up the HYH book
Welcome to the forum, ak, and may I commend you on your excellent grasp of Markdown! I look forward to your influence on other members (Hey everyone, check this out!)
I was imbalanced for over 3 years but it did eventually go away. The drugs didnāt even help this, only reduced dizziness. I remember thinking that I would never get rid of this symptom ā¦ but I did, along with all the attacks, so keep up the hope (and maintaining hope is 90% of the mental battle as you may have already realised).
I also worked in Finance btw (in IT as it happens). Itās amazing you are still working tbh! Incredible resilience! Iām not sure what to advise you here, but I will say that stress levels in Finance are very very unhealthy and are unlikely to influence your condition in any good way. I was eventually made redundant which kind of forced me to take a long break. It probably did me the world of good tbh.
I can also relate to your stress levels in other ways. After losing both of my parents (one in an accident) in a period before onset I was left emotionally exhausted. Iām not sure what influence that had on my condition.
I agree, I think balance will improve with time. Mine is significantly better now compared to a few months ago.
Great to come across something from finance who knows what Iām going through! I think any job or type of stress is bad for VM - I did notice that when I took 3 or more days off work my symptoms began to improve a bit. How long did you take off work? And how do you feel it improved you? I am considering taking 1-2 months off later this year as a gap between jobs.
Any negative emotional situation can have an impact I think. For me it was the breakdown of a long-term relationship & a violent burglary at my home which subconsciously manifested itself (alongside burnout from work lol). Itās very common to see that people have been struggling mentally, before contracting VM etc.
I was off for 6 months. I was permie so was covered by insurance paid over more than 15 years. There was one phase where I had migraines so bad I would have to lie motionless in bed for 14 hours at a time, unable to even blink, so there was absolutely no way I could have worked during the time I had off. Amitriptyline (thanks 60s medicine!) stopped the migraines (but not all the attacks) so I was much more functional once I started that.
Yes Nort is a good option, but take switching meds slowly obviously.
Ah yes, the perks of being a permie. Iām a contractor at the moment so as you know we canāt afford days off! That sounds very painful, glad youāre better now Iāll be switching to permie later this year, but I worry about declaring the VM on the health questionnaire - as I know if you have a pre-existing condition they wont cover it?
I was just reading up on Ami vs Nort - seems the former tends to have less side effects? As Iām sensitive to medication I think iād have to start off with micro doses. Doctors are totally useless, they chucked medication at me at high doses without explaining any side effects or possible withdrawal symptoms. Had to self-educate like everyone else. Private doctors are as bad as NHS ones tbh.
Best to search for comparisons (Iāve never taken Nort), but I believe the consensus is Nort causes less weight gain.
Amitriptyline is arguably more effective though as itās the stronger vestibular suppressant. Both great though as easy to titrate on and off of unlike SSRIs (!).
My biggest bugbear with Ami was the slow bowel which never got better (some side effects like dry mouth fade away mercifully) so was so glad to get off it (even though it helped me tremendously). These drugs also dull your cognition slightly. I felt much smarter/brighter of mind once Iād come off it.
Yeah, so the neurological symptoms will do that in any case.
Yes, completely med free and have been for well over a year now. During that time my remaining symptoms (apart from tinnitus, mild hearing loss and hearing distortion with large bass sounds) petered out. You can read my entire summary (and journal) here
Last neuro I saw (in Harley St) gave me Effexor and said I need to take it for around 1 year. Unfortunately the Effexor didnāt work for me, but now I understand why he said itāll be at least 1 year. Alot of people seem to chase instant recovery but after a while you realise itās going to take at least 1.5-2yrs
That is MAV summed up in a sentence and thatās how itāll be until itās under control and then some and no itās not really understandable. Bit more easy if you keep reminding yourself itās a migraine variant balance disorder and our balance is totally fundamental and pretty much governs most of what we do and donāt/canāt do so yes Itās a Big Deal all around.
Should be the exact reverse. Ami is much more powerful and have much more anticholinergic properties.
Ultra-sensitivity comes with the terrain. MAV is the result of Central Sensitisation which makes people hypersensitive to anything and everything.
Try Nortriptyline next? Maybe but
If you can tolerate Propranolol which is one of the most easily tolerated preventives IMHO (Iām the same, even react to B2 me!) why not stick with it? If you are ultra med sensitive which you seem and you have started to respond which you have stick with the PP. Too early to change yet. It can take many months to work. PP took 8 months to stop my 24/7 dizziness but it did. Eight weeks aināt gonna do it. You do need however to be on the correct dose. Itās bodyweight dependent. 130mg didnāt control my symptoms and I weighed 120 lbs. @GetBetter can even tell you the correct dose for your bodyweight if you ask nicely!
But I agree to some extent. What one has to realise, and it comes as an amazing shock, is that they donāt really know what is going on and what is actually causing all the symptoms. Many people grossly simplify this condition by calling it āmigraineā but Iām certain there are far more complex things going on: itās a systemic issue. But everyone has an initial cause.
The one doctor I met that I would recommend actually went into to proper detail for my case about why it might have happened and what was going on for me, but he also admitted there were huge gaps in the science, which is no individual clinicians fault really, itās a humanity-wide issue.
And that leads you to another shock realisation - that medicine is far from the highly developed discipline we thought it was. Diagnoses are largely determined by constellations of symptoms. So they donāe explain what something is, they are just applying a label. As far as I can see most of it is just hypothesis backed by a large amount of documented symptom correlations. The over-reliance on ācorrelationā is causing some wild dogma to emerge. And then what emerges are belief systems not objective truths. Itās a total nightmare and this has caused many arguments on this very site too, even before my time.
Canāt seem to figure out how to quote only certain sections.
Just on propanolol - why does it take months to start working? Do you have any materials/articles regarding this? Propanolol started working almost immediately for me, but I feel its reached its maximum effectiveness. And I know people also take it on an ad-hoc basis for anxiety, so Iām surprised that it takes months to reach full effectiveness?
Totally agree. There seems to be a fair amount of scientific papers on the topic, but they all seem to be regurgitating the same things over and over again e.g. āPeople will Labyrinthitis develop VMā or āVRT and/or medication has shown to decrease patients symptoms by X%ā.
There was one girl on Facebook who got wrongly diagnosed with MS by an NHS doctor! Iāve had two differing diagnoses now, so Iām planning on going abroad to get a full detailed breadth of medical testing by a team of neurologists & ENTās in order to get a firm diagnosis. I like many people, have starting take a bunch of supplements without even a full blood test (because the NHS dont seem to want to do it). Iām also at a disadvantage, as due to my age the NHS GPās seem hellbent against sending me for proper bloods or testing. The last GP put it down to āstressā and sent me home
Iāve seen 4 specialist doctors, all in the UK and all varied in their conclusions at least in some element. One guy had the cheek to say āor it could just be a bad earā.
I hate to break it to you, but even if you were to go to the US, the science doesnāt magically improve. The clinical tests are more numerous in some of the better US clinics, but to what practical end?
You will find this is a journey of search then acceptance I expect. The good news is that it will almost certainly calm down of its own accord and you will benefit from following the recommended protocols.
I agree to some extent- unlikely to go and find a magic solution. My rationale for wanting to go abroad for full testing is because Iāve been given a VM diagnosis with almost no testing (just an MRI & hearing test). Although VM is most likely the correct diagnosis, there is always a small chance that it could be something else.
The two private neurologists I saw only done a 15 minute physical examination and recommended no further testing.
Do what you need to do - itās your journey and you need to do the things which will bring you peace.
Bear in mind VM is a diagnosis, not an aetiology. Thatās a massive distinction. And no matter where you go in the world, no-one has a definitive aetiology they can fully explain to you, bottom up. There are theories, some explain it with the word āmigraineā, but thereās no explanation for onset, no explanation for why some drugs work for some, and not others ā¦ etc.
Iām sure they covered the important tests that provide the best distinction for diagnosis. MRI rules out neuroma (which would need to be addressed urgently) and the hearing test rules out Menieres (lack of low frequency loss). Then its largely just a wait and see game whilst sticking to the protocol.
I donāt have a clue and I doubt the medics do either. Possibly because MAV fluctuates so much as does our exposure to triggers during treatment thatās unless we happen to be living in a scientifically controlled environment with totally consistent environment or perhaps with ordinary folk locked in the cupboard under the staircase for a few months. The experts say to give each drug 4 months to reach its full potential
Yep. My body. I live in it.
My mantra while I was waiting for improvement was a quote from Dr Sās clinic staff at Medway which said most patients would be 70% better nine months after receiving treatment. Also many āexpertsā claim it takes at least a year from reaching the effective dose, ie the one that controls symptoms. So thereās no quick fix.
Yep and for me too. It stopped my chronic VM attacks in their tracks. I never had another one for over three years from swallowing the first PP pill. Went from maybe six 8-day duration attacks in 2 months to none! It just took a lot longer to control much of the remaining symptoms such as ear fullness, photophobia and 24/7 dizziness which faded gradually.
I know. MAV isnāt anxiety though. Personally my MAV is very hormone linked and I think out of control hormones are very strong, change constantly and fight back.
Iāve often wondered that. Loads of our American cousins end up on here after all that testing complete with the accompanying trauma, trialling the same drugs in the same haphazard way as the rest of us. MAVās a subject long overdue for research but til then this is how it goes.
(Hey everyone, check this out!)