"Preventative" Medications

I understand the concept of a preventative when thinking in terms of regular migraine headaches - where you have short-lived attacks and periods of relative wellness in between. But how does one think of preventative medications (e.;g, propranolol, nortriptylene, venlafaxine) in the context of chronic vestibular migraine, where you have discrete “attacks” from which you do not fully (or very slowly) bounce back, so that you are always feeling unwell? Can these preventative medications actually help you to feel better even if you are more-or-less constantly under water?

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Before addressing the Topic, I don’t feel this is correct or the experience of most.

From an acute attack, most people get “back to baseline” within 2-3 weeks usually. That’s the current ‘chronic’ baseline, not full recovery.

Eventually, it seems most people improve, a lot!

But ask them along the way and they may tell you that it’s all so up and down they have no idea they are “improving”.

Then over a period of months late into the condition (possibly years), the clouds start to clear a bit, and whilst they might get some relapses, the worst of it is over.

This is an interesting way to characterize VM. I’m at a point where I feel more or less chronic symptoms with days of worse or better symptoms. But I’m not sure I understand what an acute attack would feel like. I have still the occasional day where I feel absolutely miserable from the beginning, beat down, like I’ve been poisoned, with everything that can go wrong in terms of symptoms going wrong. Most days are not like that, but I’ve had only one day with no symptoms. It was pretty exciting! And it gives me hope that at some point this condition resolves or at least dies down to a much more manageable level. That is what happened with IBS: it started off with me needing constant medication, then as my body healed, medications dropped one by one until now I take nothing, and rarely even need to take anything for symptoms. I stay away from trigger foods or I don’t complain when I pay the price for indulging lol.

That’s what I’m hoping for with VM. Medications to help initially, and then the addition of supplements as well as exercise or other behaviors which help manage a chronic condition. That’s the sense I’m getting of treatment with this condition from both the patient side as well as the medical side.

Let’s get some definitions out the way:

Acute attacks are not always “migraines”, they are usually (initially disturbing) “vestibular crisis events”. I called them “vestibular attacks”.

These can be spinning attacks, strong vertigo, “magneto head”, bppv positional “stuff”, the list is longish and they can be a combo of those.

I’m not going to argue about aetiology here, but just to say they are very different from migraines or brain fog and also very different from “crappy feeling” or feeling off.

They are nasty and they can send you to bed, or at least home and if you are not used to them may completely freak you out (but rest assured you will bounce back from them).

If you never experience these you are very lucky and I hope you never have to.

However, that said, I’ve had some extremely nasty ones and never got worse in the long run, only improved.

The older hands here will know what I’m talking about.

I have not had such an attack in years, but years ago, they were bad

The bad news is that the preventative medication doesn’t seem to do very much for these, neither for their frequency nor severity, which seemed very random, never seemed to follow a pattern of any kind (except the recovery period of 2-3 weeks) and simply just one day vanished and never happened again, without any clue that was about to happen.

The medication seems better at dealing with dizziness and the migraine attacks, which for me they stopped dead (the big crazy 14 hour migraines).

I stopped my medication half way through my recovery phase when the vestibular attacks appeared to stop and never had another really major attack during my medication free days, bar some BPPV-like stuff.

Thank you for clarifying what an acute attack feels like. I don’t think I’ve had one, although I’ve had BPPV, so I know what that feels like. I have micro episodes of intense vertigo. I’m having them today, although I’m not having the normal cognitive symptoms such as brain fog. But I’m having bunches of these little moments where I feel like I’m being pushed backwards, or just been tossed into a washing machine, and I sure as hell cannot walk in a straight line. But that is definitely not what you have described as an acute attack.

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I think you can call some of those minor acute attacks, but the big ones destroy your fortnight, lol!

(But the good news is its just two weeks, meh, you’ll get better again!)

This is why I track symptoms daily with a numerical score and graph. Its really hard to qualitatively assess where you are on a day-to-day basis to determine if you are improving or not

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Yeah, I should have carried on with that, it’s great you are doing it. I wonder if you will pick up a long term pattern? I hope so. If you can maintain the discipline to keep doing it, great!

I did stats to start with, first manually, then with the aid of an app.

The problem comes when you start to feel a little better (which I’m sure you will!). At that point you get lazy recording the stats! :sweat_smile:

I am “chronic” in that I have periods of increased symptom intensity which I refer to as “attacks” and then a baseline which is always chronically slightly dizzy. I suspect this chronic slight dizziness would go away if I was able to reduce the frequency of attacks because the recovery period is so long. Many of my most debilitating symptoms are actually “interictal”, meaning between attacks. Indeed, when I was still episodic, I would have interictal symptoms of depersonalization/derealization (severe) that would not abate over periods of weeks, which I suspect means that a long interval between attacks is required for a true return to baseline pre-VM.

I think preventatives are only really useful in that they reduce the frequency of the next attack, prolonging the recovery time so that you can get back to baseline at some point before being shoved back under the water. That and in that attacks seem to have momentum – the more you have, the easier it is for them to come back.

I think I’m in such a habit of doing the log now that it would take a pretty substantial change for me to ever stop doing it. I can only hope and pray that day eventually comes!

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I would describe my persistent vestibular problem as “imbalance” not “dizziness”. The Amitriptyline seemed to reduce the dizziness extremely well.

The de-realisation stuff happened very seldom for me, like maybe 3 times in as many years, but starting with day one actually - that was the first thing I experienced and it felt like I was not in my body any more, and completely freaked me out!

Brain fog for me happened weirdly in the latter stages and I didn’t get a scotoma until the last year or so of my chronic persistent phase.

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It’s a beast. I suspect even when I get to a point of “full recovery” I’ll still have a certain degree of trauma from it and constantly be on the lookout. I can’t imagine ever “forgetting” about VM.

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It totally changes you. I lost a lot of confidence and laisse-faire I will probably never get back. But at the same time I learned loads and grew wiser. Then again, life should do that whatever :wink:

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Let me add some clarification. By “acute attack” - I meant waking up and knowing you have taken a big step down. There is usually spinning vertigo. I had a major such “attack” on January 2 (violent positional vertigo), recovered to a large extent 2 weeks later, had another big step down after watching a movie, recovered to some extent over the next 4 weeks, and then had another large step down after watching a movie (I guess no more movies for me) - and that was nearly 4 weeks ago. My recovery over the recent 4 week period has been very slow and very limited. So I still feel under water - meaning I cannot sleep in my bed or relax in my recliner without some dizziness and nausea, and I have extreme motion sensitivity, and the usual extreme sensitivity to visual motion. Cannot really drive any significant distance.

It is hard to describe these things (as you all know) and also the recovery is so slow and “lumpy” that you do not notice it day to day - but maybe notice on thing improve from one week to another. The essence of my question - and maybe it’s not relevant because the meds are slow acting - is whether the meds can help you to improve over time when in a rut.

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I can’t tell you how preventative meds actually work medically, but my symptoms are 24/7, i don’t have episodic attacks. The severity of symptoms comes and goes throughout the day at various intervals, but it’s always present. I took Flunarizine and got to about 97% wellness after spending every day in bed for several years. My symptoms became very, very mild. Unfortunately i had to stop the medication due to side effects and the VM returned. But the meds did work. I felt an improvement after a few weeks and was at full benefit after about 12 months. I hope i can find something that works just as well.

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May I ask what kind of side effects you were experiencing? Must have been pretty bad to prompt you to go back to the VM symptoms.

Drug induced parkinonism. I didn’t get a choice, had to stop the meds.

that’s why flunarizine isn’t approved in USA

I know. Drug induced parkinonism is mostly reversible though when the meds are stopped, and other drugs cause it too. Any calcium channel blocker can cause it, SRIs and prochlorperazine. I’m not sure why the US are so against Flunarizine, even though they sell it to other countries. The NHS imports it from the US.

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The FDA is very weird with what they allow and disallow. Also there’s a clear differentiation between “the US” as in the US Government and the US Pharmaceutical industry.

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I tried a few meds that the side effects were worse than the symptoms or just made the symptoms worse. The only preventative that I am on now is Emgality and is a once-a-month injection that I do myself. It mostly works for keeping the migraines away, but I have other conditions that I am doing trial and error medications that sometimes causes migraines, so I keep going back and forth with symptoms. There was a steady period for over a year that I don’t think I had any migraines, but I never know my symptoms have gotten better until they get worse again. The tingling in my body and ear fullness never goes away but some days are worse than others. The dizziness and positional vertigo come & go randomly. I do get nauseous pretty often, but I do have other conditions so it’s hard to pinpoint which is causing what. Even though I may not be cured, at least not having the migraines is one less thing to deal with.

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