Hi all,
Reading the posts of late, I feel a lot of people who have had good long stints of feeling ok are now having a relapses. @MNEK18, @Jools, @sputnik2 and others.
Is it the weather? One month out of winter for you guys? I wonder what is causing it?
Hopefully recovery is quick and the sun comes out literally and emotionally.
My reason for a relapse was an illness I got (ischemic colitis) otherwise I was nearly 95% for like 8 years so I’m here to say it’s possible to have your life back with the right treatment plan. However I learned that a serious medical illness can relapse you back into pre medication days. At least for me and I’ve been in a relapse 8 months so far but I’m doing a lot better slowly.
It is interesting to hear your experiences. Definitely lucky to not have any. I hope you are all doing well!
Long recovery hopefully means long stint of being well. Hang in there
Hey Belindy!
I wish I knew the answer to that…
I spoke with my GP yesterday and we both agreed that I should take 60mg as of yesterday evening. 8pm rolled around and I took 60mg as opposed to 55mg and boy did I feel it! So drowsy and off balance (balance worse than it’s been for the last two weeks) stumbled upstairs and got into bed woke up maybe 3/4 times with dizziness. I know increasing can cause an exacerbation but it was quite scary.
Today I’m wondering how long it will last… It’s only 6.25am here so I’m going to get back into bed and see if I can try and sleep some more. I shall let you know how it goes… neck pain has ramped up too. I feel so faint like I’m walking around with the weight of the world on my shoulders. Can barely stand for long it’s too taxing. Hopefully it won’t last too long.
Hope you’re good? 
“What’s the reason for all the relapses?”
To answer that fully we’d have to have a detailed aetiology and none exists (for any of the major vestibular conditions)
There’s a lot of fierce debate about this in #research-theories-controversies but in the end there is no definitive, certain explanation for any of this.
If ever there was a brutal training course on how to deal life’s uncertainties, these conditions are it!
We know certain drugs, diet and lifestyle changes help from clinical experience.
We know most people get better but it can take a long time. Relapses occur but I think it’s fair to say almost no-one is worse once they’ve recovered from each relapse and even if they are it’s just a question of time before they are back to baseline.
I’m not as good as I was the day before MAV hit me 6 years ago but I’m waaaaaaaay better than I was 6 months in:
Night.And.Day.
You posted a thought that been popping around my head all the week.
And as of today you can add me to your list. Ain’t that a joy.
I knew something was afoot when the night before last I felt queer lying on my righthand side in bed. Then I woke early feeling very lightheaded (not usual for me at all) and swimmy. It passed off and yesterday I felt pretty good and thought no more about it. Until the same happened again this morning but this time I had BPPV on sitting up. Waited til it settled then made my way to the bathroom only to lose it entirely and end up lying down on the floor quickly before I fell down. Assisted back to bed took Prochlorperazine for the sudden onset of nausea and managed to get up couple hours later. Strangely enough no other symptoms. The BPPV stopped, the drug controlled the nausea and although I can walk I feel rubbish, as you can see screen no problem, TV neither. Now just a bit of rear head pressure.
My earliest MAV attacks were ‘just’ vertigo, the very first one was just a brief few seconds of BPPV type stuff so I’m kinda hoping maybe mine’s working backwards towards stopping altogether though I suspect that’s a vain hope. I wonder whether delusions are a symptom of long term VM😁? I suspect that they could be,
One wonders what causes it. In the cases you list I’d say hormones. Could be end of winter Vitamin D levels right down adds to their already powerful effect. I know here in the U.K. doctors have mentioned they found seasonal influences with labyrinthitis cases. In fact one Spring a friend of mine actually knew personally, not talking virtual here but known and local to her, about half a dozen all at the same time.
I suppose the best theory I can offer comes back to the “overflowing jug”. MAV’ers have super sensitive irritated brain stems and although the meds were helping to dampen symptoms down other things have now caused a flare up causing the “jug” to overflow into MAV land. Sometimes it may be down to accumulated ongoing stress or a stressful or sad event. It could be a post viral syndrome. It could be down to over doing things when feeling okay. It could be (as I suspect in my case this time) hormones (“they lob a bomb into recovery for peri menopausal women” and post partum women according to the specialist I’m with). MAV apart from its symptoms causes all sorts of extra stress on the mind, relationships, income, career, lifestyle adaptations, restrictions on fun, going out and living a normal life. There could even be the seasonal element or the disruption to sleep hygiene caused last week by the clocks going forward all adding to to the “jug” of irritability.
I obviously need to buy a bigger jug😁. Once the non-essential shops reopen on 11th April of course.
I wondered about The Clocks going forwards. Never used to notice that really until recent years but remember commenting to Him Indoors I didn’t notice it this last week-end as I usually do. Maybe my brain had other ideas.
Do Amazon sell those?
I think you are very close to the truth there.
I suspect it could be combination of stress and normal viral load that reaches a point where it overwhelms the body’s physiology.
I suspect this is more complex than the ‘trigger’ model and impacts more systems.
It’s basically the entire set of checks and balances being overwhelmed so they no longer keep the systems stable.
MAV is all about the control system of the body losing stability.
The trick is surely to find the way of guiding the system gently but slowly back into a zone where it gathers tolerance.
Is that a proven thing? Longer recovery leads to longer good periods?
I should add: ‘hopefully.’ No, not proven. It was a mantra I was telling myself 3 months in.
Hopefully it’s true!!
I wouldn’t say I’m having a relapse exactly, but having made pretty steady progress for 18 months, the last 6-8 weeks I’ve felt pretty rubbish. Nothing like previously, I’m in work, still up and about but have pretty constant ear pressure, nausea, balance hasn’t been great, I’m exhausted and just an underlying rubbish feeling daily. I also keep thinking I’m hearing a very, very faint ringing in my ears, so quiet I’m not entirely sure it’s definitely there!! Frustrating when things have been going well. The ups and downs of vestibular somethings can be the hardest to deal with!! Someone suggested to me today that perhaps the weather could be impacting things. Who knows!
I am fairly stable these days and don’t take any meds, but I have noticed that every time there is a change in the air pressure my ears go into a decline - feeling of pressure or as if stuffed with cotton wool. I use the weatherX app and there is a definite correlation with my ears feeling off and changes in pressure - there have been a lot of pressure changes over the last 3 months! Roll on the summer!
These relapses all depend on what condition you are in. But to avoid, get up slowly in the morning and sit on the edge of the bed for a moment before standing. This can also help in blood circulation.
Does reducing caffeine intake helps in avoiding recurring relapses? I’m a coffee lover and I at least drink 2-3 cups everyday, usually after taking meals.
This is usually advised. Switch to decaf if you struggle with giving up coffee.
This was hard work to give it up completely. But did it cold turkey in the midst of a baaaad episode. Now… I don’t crave it anymore. And have taken it off the list of possible triggers for relapses. Get rid of it I say. And you’ll save heaps of $$ (if you bought one everyday like I did).