Author Topic: Hello  (Read 892 times)

Offline milady

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Hello
« on: Sep 11 2017, 08:04 PM »
I've been dipping into this forum for a while, and was concerned to see the posts about possible closure. This has concentrated the mind into signing up, as I prefer a generally UK oriented forum, and this is the only one I've found that also mentions cycling without saying 'no don't'. So I hope you won't be closing, especially if everyone posts a little more often, even just for general chat about how things go.

I have being going deaf for the last 15 years or so, and now have severe hearing loss, 2 hearing aids, and constant background tinnitus. About 15 months ago, I had a vertigo attack which lasted about 2 hours. I didn't think anything much about it. (Just pull yourself together, woman.) When I had a couple more about 6 weeks later, the GP reckoned it was probably BPPV, and recommended exercises, which seemed to do the trick. About this time. I was also told I needed to reduced blood pressure and cholestrol and should take more exercise, so I excavated the bike from the garage and off I went, promising that if I kept at it I could have a newer, flasher bike with more gears. (I did and I have :))

Over the next few months, a few more random attacks of vertigo, lasting a couple of hours sometimes, but with gaps of several weeks (6-8), but it was only when things went sideways while I was out on the bike (fortunately on a quiet road) that I went back to the GP, who set up the ENT referral. So, on to what must be to many of you, a familiar track - basic balance assessments (none of them made me dizzy)and an MRI, and 'come back in 6 weeks'. Well, the MRI turned up nothing, and at the next appointment (seeing someone different of course) I go through the whole thing again. This doctor thinks it isn't bppv (and nor do I by now) and consults with the boss man and they decide it's 'probably Meniere's, take Betahistine and come back in 3 months'. So, goodbye driving licence, hello bus pass.

At this point, lots of people told me I shouldn't cycle 'because you might fall off', to which my reply was 'but I might not' and any way I'd bought the bike so I was going to ride it. Yes, I'm more cautious about it now, and don't hammer down the main roads, but it beats sitting at home and worrying (imho).

Anyway, after 3 months on Betahistine, with random moments when things go sideways, the ENT consultant still thinks it is probably Menieres, but isn't 100% certain as I don't report temporarily increased deafness or tinnitus - mainly because I'm so deaf already I wouldn't really notice. So, is it Meniere's or not? Anyone else had atypical symptoms? And does anyone have any experience of 'vestibular rehabilitation', which is the next thing I've to try before I see the consultant again. Meanwhile, My friend and I have bought a tandem and we're planning/dreaming of riding the end to end. It's always nice to have a crazy plan...




Offline The Wobbler

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Re: Hello
« Reply #1 on: Sep 11 2017, 11:24 PM »
Yes milady, as Parker would say  :), and welcome to the forum.  You are in the right place as there is the MDUKCC, a Strava entity where you can share your rides with fellow inmates of this affliction.  Meniere’s is not a barrier to cycling, and some of us think that pedaling is actually part of the cure.  One of our number has completed LEJoG already this year.

I like the tandem idea – a smart move for the off days when you can be the stoker.

Atypical yes.  I was given MD as a "work in progress" diagnosis in 2010.  It still is.  Not all MD is created equal.  Keep pedaling!

Offline milady

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Re: Hello
« Reply #2 on: Sep 12 2017, 07:00 PM »
Thank you, Wobbler.
What is Strava? Is it some mysterious electronic gadget? I seem to recall something about it in the ads during the TdeF, but didn't pay much attention - too much lycra (I haven't graduated to that yet, though once we figure out how to ride the tandem, we're going to be OWLs - Old Women in Lycra!). As for mileage, where I live the houses are set round a green, and the road doesn't go anywhere, just forms a loop off another, so there is very little traffic and I can ride round and round in reasonable safety (though the neighbours think I'm a bit odd). I do try to go further afield sometimes, just to remind myself I can. I pick quiet roads and go early at the weekend while everyone's having a lie in - apart from the other cyclists. I probably clock up 20 miles a week at the moment, maybe a little more, so I doubt I'll be challenging any records in the MDUKCC, but I try to go out for 20-30 mins every day and I find it makes things seem so much better.

Offline Beckybec

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Re: Hello
« Reply #3 on: Sep 13 2017, 04:52 PM »
Hello,
I am so impressed that you cycle. :)
I used too but I can't turn around to look at behind me without going wobbly so had to give it up!
Just yoga and brisk walks for me now.
I do daydream about running again but I'm having a bad year.
Diagnosed now with chronic MAV and struggling with pain in my ears when my heart rate goes up, does anyone else have this?

Offline milady

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Re: Hello
« Reply #4 on: Sep 13 2017, 06:52 PM »
Hello Beckybec

Having looked it up, MAV does sound unpleasant.

I think the time I came off the bike when the road went sideways may have been caused in part by trying to look round. I have a mirror now.

Offline Spinner

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Re: Hello
« Reply #5 on: Sep 14 2017, 04:31 PM »
Cycling continues to be the only treatment I can find that allows me to lead anything resembling a liveable life. I'm still optimistic that I might find other ways of managing my health that work, but in the 8 years since I got diagnosed nothing else has really done much for me at all.


Offline MissCheeva

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Re: Hello
« Reply #6 on: Oct 06 2017, 09:19 AM »
Hi Milady,

Yes I cycle too.  My husband is worried I will wobble under a lorry one day, but when I am having bad bouts I don't like to drive and cycling is my only option to get to work and pick up the kids from school.  I just keep to quiet roads and go on the pavement (I know I shouldn't) if necessary.  It is lovely and liberating to be out and about when this illness attempts to keeps us at home in bed.

MissCheeva

Offline milady

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Re: Hello
« Reply #7 on: Oct 09 2017, 06:57 PM »
Quote
when I am having bad bouts I don't like to drive

Have you not had to give up your licence? That was the first thing I was told I would have to do - report to the DVLA and see it revoked.

At least I don't have to get to work nowadays. Buses round here are only slightly more common than hen's teeth, though at least they do run daily, Mon-Sat, but getting anywhere further than the town - about a mile - without serious forward planning is now a pain. I would/should cycle further afield more often. It is getting round the idea that at any moment the world might go sideways, even though I know it probably won't. I try not to dwell on the 'might' but it never quite leaves the back of the mind. Probably successfully making a trip would help; maintaining one's confidence needs constant work.

Offline MissCheeva

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Re: Hello
« Reply #8 on: Oct 10 2017, 09:20 AM »
Nope.  I have informed the DVLA, but as I get a warning (weird feeling) before the spins start they are happy that I can pull over and stop.  If I didn't get the warnings then yes I am sure it would have been revoked.

MissCheeva

Offline milady

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Re: Hello
« Reply #9 on: Oct 10 2017, 06:48 PM »
So even weird feelings have their uses! I get a few seconds warning at most. :(