Author Topic: No warning attacks (Read 513 times)

Gildo · « **on:** Jul 21 2019, 12:05 PM »

I have noticed recently that the attacks I have had have come without warning. No fullness. No increased tinnitus. Yesterday evening I was standing at the sink, filling the dishwasher and BANG everything started to spin. I stumbled to the livingroom and lay on the settee hoping it would pass. No such luck. Every time I tried to stand and walk it felt as if some force was pulling me hard towards the floor. It took me an hour to crawl upstairs to the bathroom. Has anyone else had attacks without warning

milady · « **Reply #1 on:** Jul 21 2019, 08:33 PM »

I get that, but usually it only lasts about a minute. My drill is to shut my eyes and hang on, while reminding myself it's not really happening, then check after about 30 secs to see if things are still moving, and hopefully, slowing down. If I can make it to a chair, I sit down. I find that holding up something like the newspaper and looking closely at that so I can't see the background moving helps too.
Sometimes I try to ignore it - you can't always stop what you're doing straight away - and work through it, but I find that though the spinning stops fairly quickly, a kind of 'heavy head' feeling can last for a while after - if I turn my head to look at something, my eyes don't seem to keep up and I have to concentrate on walking about - rather like being slightly drunk.

ahammond · « **Reply #2 on:** Jul 22 2019, 05:26 AM »

When I was having my attacks a few years ago they would often come without warning. If it is of any help or hope my attacks eventually stopped and I have been relatively free of major symptoms for a few years now. So the disease can burn itself out.

harry · « **Reply #3 on:** Jul 22 2019, 11:03 AM »

Vertigo attacks without warning is pretty standard with MD. Sometimes you feel a bit "off" before (not immediately before but generally wake up or feel like that for a couple of days) and I normally take that as a sign to slow down and not drive for a few days. But a vertigo attack will normally come out of the blue which is why so many people with MD are anxious and fear the next attack.

Remember that it is VERY IMPORTANT that you declare your illness to the DVLA and your insurance company. If you get some kind of warning or feel that you could safely navigate to the side of the road (if the attacks are not too bad) then you should be able to keep your license but if not they may well take your licence away until you have been clear of vertigo for 3 months. You insurance premium should not go up as a result of MD but it must be declared.

If I have a vertigo attack then I personally decide not to drive for at least 1 month until I feel that they have gone over. It is well documented that attacks often happens in clusters of days/weeks then settle down for a while. This is very true in my case.

Gildo · « **Reply #4 on:** Jul 22 2019, 03:23 PM »

Thanks everyone for your replies. My illness seems to have returned with a vengeance lately. Previously, before an attack, my ear wouldve felt full and my tinnitus would've become louder. It allowed me to prepare for what was coming. Not anymore it seems. The tiredness afterwards is awful and it's as well im not at work at present because I couldn't function like this!

ahammond · « **Reply #5 on:** Jul 23 2019, 06:02 AM »

Have you tried Arlevert tablets? They helped me a lot when I was having my attacks especially with the vertigo side of things. I found out about them from an American web site but had a little bit of difficulty obtaining them at first as neither my GP or local pharmacy had heard of them. Worth a try if nothing else.

Fatbloke999 · « **Reply #6 on:** Jul 23 2019, 10:55 AM »

+1 for the Arlevert tablets. I took them for a good while alongside the Betahistine and found them most effective. They can make you tired but not on the level of how tired you feel while you are having a period of attacks. They are a combination drug with Cinnarizine and Dimenhydrinate. I had previously tried just Cinnarizine but it was not so effective and at the full dose sent me off to sleep. Dimenhydrinate is itself a combination drug that is Diphenhydramine (found in Nytol and Benylin) which also causes drowsiness but it is combined with a second ingredient (8-Chlorotheophylline, a stimulant type drug) to counteract the drowsiness. It is worth a try. I would have no hesitation going back on it if/when things deteriorate again

Gildo · « **Reply #7 on:** Jul 23 2019, 11:56 AM »

No i haven't tried those tablets and have never heard of them. I will hopefully be returning to work in September. Would they impact on my ability to drive or function in general?

Fatbloke999 · « **Reply #8 on:** Jul 23 2019, 01:38 PM »

Soon after starting them I was functioning as close to normal as I had been since the meniere's had started. They did make me tired but not so i couldn't work or drive. When the attacks happened they were massively reduced, though I still lost a few days off work here and there. As the frequency of the attacks reduced I came off them and have managed just with Betahistine since. I've always been quite sensitive to things that make me drowsy but I was generally ok day to day.

Gildo · « **Reply #9 on:** Jul 23 2019, 07:10 PM »

Good to know. I think it's something I will have to consider. I had a 'passing attack' today again. Took myself straight to bed and lay there quietly until it passed by. I was left with a headache though. I think stress is a big factor for me at the moment. I want to get back to work but my employer is taking no notice of my limitations and I think every time they offer me an unsuitable job it chips away at my nerves. As well as that I have other personal issues to deal with and a RTA claim that the solicitor is dragging his feet about. I truly have lost a lot of confidence lately

Fatbloke999 · « **Reply #10 on:** Jul 24 2019, 01:10 PM »

Sorry to hear about your troubles, I have seen your previous posts. I agree that stress can be a big factor and confidence too, it all goes hand in hand and can influence how badly you are affected (a little) and on your ability to cope (a lot). Fingers crossed that things pick up for you soon.

Gildo · « **Reply #11 on:** Jul 24 2019, 07:19 PM »

Thank you so much for your kind words. Hopefully all will be sorted soon from all angles lol. I had two attacks yesterday so I was left feeling pretty deflated. Maybe it's just my age lol.

MissCheeva · « **Reply #12 on:** Jul 30 2019, 01:00 PM »

Hi Gildo,

Sorry I haven't responded sooner. Yes when I am going through my bad periods then I do get attacks come on with no warning. As soon as I feel off then I stop driving until it passes (the last lot took 6 months!). Mine recently only seem to last about 20 seconds and then they go, but previously they have lasted much longer. It just seems to be one of those things that happens with MD. I know that if I am stressed then that definitely affects it. I know you are going through a hideous time with your work and that can't help.

I hope this bad patch clears up soon.

MissCheeva

Gildo · « **Reply #13 on:** Jul 30 2019, 03:30 PM »

Thank you all so much for your replies and support
It's reassuring to chat to others who know what I am going through

MissCheeva · « **Reply #14 on:** Jul 31 2019, 02:09 PM »

Yes that is why I love this place. It is a little sleepy at times, but it helps me feel less alone when it MD is trying its best to make my life a misery.

ladar · « **Reply #15 on:** Aug 01 2019, 03:57 PM »

Hi Gilda

So sorry that you are going through a bad patch at the moment and hope it calms down soon.

I have been taking Arlevert for a couple of years and, combined with the serc, it has helped me enormously. (I’m taking 9 x 16 mg a day). Thankfully the combination is helping things stay quite calm at the moment. My GP was quite happy to prescribe them after I had shown her a printout about it. I really think the combination of the two is keeping the big vertigos on an even keel for me although I do still have mini ‘attacks’ which last about 5 minutes so I just keep still and sit for it to pass.

Hope the Arlevert works for you and things improve. I understand how depressing it is trying to deal with all the side effects of this disgusting disease and do hope better times are on the horizon. As you say it is good to have this place to let off steam.

Linda

Gildo · « **Reply #16 on:** Aug 02 2019, 08:47 AM »

Hi everyone and thanks again for the support.
My GP had never heard of arlevert and wouldn't prescribe. He said as I am taking betahistine he wouldn't want to mix the two. I have asked for a re-referral to my consultant so maybe I will have more luck with her, though I'm sure the re-referral will take weeks. In the meantime I may just try to get on with it.
I fly today and yesterday both ears were wonky! Thankfully my good ear appears to have MOSTLY (it's still being a bit naughty) resolved whatever issues it was having.
I still think hormones are triggering some of this madness and I will be asking my consultant if this is possible.
Once again thank you all for your words of wisdom
Xx

NEWOSA65 · « **Reply #17 on:** Aug 05 2019, 10:54 AM »

Do you have late Menieres?
Best wishes,
Simon

Gildo · « **Reply #18 on:** Aug 05 2019, 11:34 AM »

Excuse my ignorance but I was diagnosed about 10 yrs ago. I lost my hearing after a relapse nearly 3 yrs ago. It seems I am relapsing again lately. Is this why I can't have arlevert?

NEWOSA65 · « **Reply #19 on:** Aug 05 2019, 01:26 PM »

Hi.

Probably 10 yrs could be classed as 'late Menieres'. This is normally the stage where the illness has destroyed most of the Vestibular function. At this stage the attacks may happen without warning and may lead to more serious attacks such as drop attacks (although some folks have drops in the early stages of the disease). It doesn't mean to say that because one has late Menieres that you will go on and have drop attacks though!

I never tried Arlevert. I decided to pass on all meds after the 6 betahistine daily failed to help. (I know that some of us have 12 x 16mg serc or even more but I still feel that any positives are shortlived).

I bypassed all meds and went to the Gentamicin injections. 3 injections cured my vertigo for life! And with no hearing loss! (Some folks only need one injection!). I think the Arlevert is something that isn't recommended for long term use - it has the stugeron (cinnarizine) as an active ingredient along with dimenhydrinate. Its the combination of the two drugs that make it effective. I only tried Cinnarizine at 6 x 15mg daily (although some folks take over 12 a day!) which did helpa little in the early stages, but my attacks were relentless!

You should be able to resume the Arlevert if you've had a break from it though, surely?

Best wishes

Gildo · « **Reply #20 on:** Aug 07 2019, 04:13 PM »

Hi
I have never been prescribed arlevert and my doc knew nothing about it. I was told though that I'd have to stop taking betahistine in order to start arlevert and that's something I didn't want to do especially with a holiday approaching. I am currently on holiday and was unwell a couple of days ago. I know I'm not 100% but I'm on my feet so that's a positive!