Ive been a part of this forum for a while but never wrote anything

Hi all
Ive been apart of this forum for a while but never wrote anything. To be honest it’s only been the last few months where I’ve really been able to come to terms with my diagnosis as silly as that may sound. I’ve had vestibular migraines for a year and a half. And I’m currently taking propranolol. How is everyone doing?

Hi Jessyka, I also didn’t participate on this site that often until I came to terms with my condition. What dose propranolol are you on? I’m on 360mg of Verapamil and seem to be getting better although its super slow. My head pressure is nearly gone but the floaty / off-balance continues, albeit less than it was.

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Not silly at all, Jessyka.

It’s incredibly trying thing to deal with and very confusing indeed.

Great that you say hello :slight_smile:

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A post was split to a new topic: My first post …

Hey, I’ve only just reached 80mg slow release. However I’m finding that I’m struggling more on this slow realease type of tablet, but going to give it another 3 weeks till my next appointment. In the beginning I never was on medication and I even improved then I was never as bad as it first was. Yeah I still have that feeling to that’s the only thing that lingers around anymore now really. Let’s hope it carries on getting better for us both :slight_smile: x

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Hi
That it is! Especially when it just came out of knowhere and the day before I was totally fine ( or so I thought I was)

Hope your feeling ok x

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Hi

I’m Propranolol too but never the SR. So med sensitive had to start low on the 3x daily type and medic too afraid to change me over in case. Sounds like you changed over? I’ve read the SR is the recommended one for VM/MAV but also read it’s not equivalent in dose terms. Didnt understand the technicalities of why but perhaps that’s why you struggle? A pharmacist might be able to enlighten you,

thank you, I’m doing ok today apart from a buzzy ear that woke me up a couple of times last night, lol (but can hardly complain as that’s usually the least of people’s worries on here!)

Hi,
I think I will speak to the pharmacist thank you. I started on 10mg 3 times a day :slight_smile:
And i noticed when I was having a dizzy time I would pop them and would feel better within minutes really. Just this time around I’ve been more tired and dizzy more and because the pill has already been taken I don’t have anything to take that away if you get me as its suppose to work on it own throughout the day.

I’m glad your doing ok though, yeah the buzzy ears still aren’t nice but I understand where your coming from. This is going to sound odd but do people suffer in different severities of this disease? Just I’ve never really spoke to a doctor who understands much about it so all the info I have is from people who suffer also x

Well, I don’t think we can be sure it’s a disease. Mine was caused by an injury. They call it ‘migraine’ but that’s controversial … it’s a big part of the problem but no proof yet that that is the cause. There is anecdotal evidence to suggest that MAV arising from injury appears to recover somewhat within 5 yrs. Others are less lucky and it can go on for longer. Perhaps a lucky few only get affected for a couple of years. Seems most people improve. Again, an unlucky minority don’t.

Believe me, nothing sounds odd with MAV. MAV in Itself, is ‘odd’. It affects everybody differently both in terms of symptoms and severity. Some plp can hv MAV and still jog whilst others can barely stand and that is on an everyday basis. Some of either category have periods of acute attacks when they are bedridden, others do not. MAV also continually changes, ‘morphs’ through each individual. The symptoms I started with and those I have now are completely different. MAV is often called a ‘ migraine variant balance disorder’. It’s possible its a collection of conditions lumped together because they share common symptoms and tend to respond to similar treatment. That would account for the wide variations throughout.

There are nine GPs in the practice I attend and none I’ve come across have even heard of it. They don’t acknowledge it exists. You need to go to neurologist level for that in UK generally.

Probably psychological. One always feels better to be doing something positive to improve things. Now it feels like you aren’t anymore. The 80mg SR would be quite alot higher a dose than three 10mg obviously it’s kust you cannot think you can see it working.

The reason I ask is because I have a now friend who suffers and she has vertigo attacks, which I’ve never really had just bad dizziness in the beginning. I got better without medication, it went away completely when I was pregnant and now it’s creeped back in, but I can still do anything and everything. I’ve never been bed ridden with this either. Where as others have. So I was just thinking even though we all have the same thing we must have it to a different degree if you get me.

Totally. For me it’s morphed A LOT. I’m now no longer dizzy or imbalanced. There was a point it was so bad I thought about suicide … days when I was stuck in bed staring at a wall unable to move a muscle, even close my eyes, for hours on end … those were dark days.

I went from 30 to 60 to 80 but this is the only time it’s been a slow release pill.

Gosh that sounds so awful I’m really glad your not at that stage anymore and that you found it in yourself to carry on. How long have you been suffering with this for if you don’t mind me asking? Also have you got this far because of medication etc?

I’m now coming up for my 3rd year of chronic symptoms. The chronic stuff came on about 6 months after the initial incident (I pointed a shower into my ear, which caused initially only 5 weeks of balance problems). Three specialists dismissed the shower incident as having caused my chronic symptoms. My latest doctor agrees with me that it’s related.

However, I’m a bit of a success story, as despite having a few annoying ear symptoms left, my balance is fine now and the attacks and migraines have gone, so nothing to grumble too much about at the moment. If I didn’t run the site I probably would have gone off into the sunset :cowboy_hat_face: :sun_with_face: :slight_smile:

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I would say my ears and the odd dizzy feeling is all I tend to get now, all the initial symptoms have passed for me also including the bad eyes etc. And noise sensitivity was sooo bad before.
Do you hear of many success stories like yours? So after doing that with the shower is that what brought yours on? Also what chronic symptoms do you have. I tend to have mine everyday also.

Sorry I just read that you did that after the intial time it happened

Yes I’ve had noise sensitivity. I still have it (e.g. need to be careful loading dishwasher, don’t enjoy live music anymore :frowning:, sold my piano ), but it’s a lot lot better. If a lot has eased in your case that might make the case for yours also having been caused by a ‘one-off’ incident at some point.

I’ve had every one of the chronic symptoms listed here. (first post).

It’s very eye opening how I could have all the symptoms of MAV, but it was brought on by a physical injury to my ear (not proven but likely).