meniere

Author Topic: Site (not) Closing  (Read 1518 times)

Offline Spinner

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Site (not) Closing
« on: Aug 08 2017, 03:25 PM »
No posts for about 6 weeks now so we're thinking its time to call it a day.

If anyone wants to create a facebook group to replace it please do. If you include "MDUK" in its name we should be able to find it and regroup there !!

Its a shame the forum has died out as its been a great help to many people in the past. I suppose many people don't want to put their woes online which doesn't help.

There are other facebook groups already.

Wishing you all the best :)

cheers!
Spins

Offline The Wobbler

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Re: Site Closing
« Reply #1 on: Aug 08 2017, 05:52 PM »
Not so fast Spins.

I check this site daily just in case someone comes up with the cure for MD and is kind enough to share it.  If I find that isnít the case, then I go for a bike ride to improve the blood flow to my inner ears and to give myself some time to contemplate the meaning of life.

To close the site would be akin to an International War Crime.....

Offline dmj

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Re: Site Closing
« Reply #2 on: Aug 08 2017, 06:21 PM »
I check the site regularly and often go through old posts when I'm having a bad day.   So ** please ** reconsider!!

When I had gent treatment my ENT consultant didn't tell me how it would affect me and I spent a week in bed.  It was only when I read past posts on the forum that I needed to get up and about and I would compensate that I recovered.     

I've learnt so much here and 5 years on and six gent shots later its still a lifeline.


Offline Spinner

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Re: Site Closing
« Reply #3 on: Aug 08 2017, 07:25 PM »
I'm happy to continue being "the techie" and Moz seems happy to continue to pay, but it seems a bit pointless if noone is using it.

There is a lot of value in the old posts on here for sure, so its a good resource for people with a new diagnosis to find out what things to try to help make the condition settle down.

I have a backup of the forum but that sat on my hard drive won't be a lot of use to anyone!

I think the cost of running the site is about £50-£60 per year so that is quite a few pints  8)

Lets get a few more comments on board to see how many people want to keep the forum.

Also I've mentioned before that it seems like lots of people don't want to post in public. A private members area is an option, thats effectively what a facebook "closed group" is, we could set that up on here easy enough. Whether that would revive the forum is hard to tell.

I fear the end is nigh  :-\

Offline Gatzby

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Re: Site Closing
« Reply #4 on: Aug 08 2017, 07:50 PM »
I sincerely hope the end is not nigh, I too check this forum daily and have found it very helpful in the past and it has been a source of not only information but also inspiration. As I'm sure most on here will know MD can be a very lonely disease and it can be some comfort to know that you are not the only poor soul suffering.
I don't use social media so if it were to be transferred to there I would be lost, I don't mean that to sound selfish but whatever will be will be. If you do decide to call it a day I would like you to know this forum has helped me through some very dark days so please accept my heartfelt thanks for all the help and info I have gained in the past .

Regards  Nick G
God is a figment of the imagination according to Stephen Hawking and I agree with him.

Offline sylvespa

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Re: Site Closing
« Reply #5 on: Aug 08 2017, 11:06 PM »
I too check this site almost daily and have posted a number of things recently relating to my steroid injections, grommets and high dose Serc. Please reconsider, it's important to keep this site going.

Offline ahammond

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Re: Site Closing
« Reply #6 on: Aug 09 2017, 06:33 AM »
I have not had an attack for a couple of years now but I still check the forum daily. I have found that it tends to go in spits and spurts with nothing new for a month or more and then all of a sudden a new post appears every couple of hours.  I would be dissapointed to see the forum close as it has helped me understand MD better and helped me to cope when I was getting almost daily attacks. Just because there are not a lot of posts at the moment does not mean that people are not interested in the forum.

Offline harry

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Re: Site Closing
« Reply #7 on: Aug 10 2017, 07:18 PM »
I too would be very disappointed if site closed. I view it daily and it has helped me in the past and I believe that I have been able to help others through this site. Perhaps we need to get it more noticed by others.I will send an email to the Meniere's society to see if they will be willing to mention it in the next "spin" publication.We need some new members !!

Offline Spinner

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Re: Site Closing
« Reply #8 on: Aug 12 2017, 10:20 PM »
... ;)

There's a facebook group here if anyone wants to join :)

https://www.facebook.com/groups/2005658752982392/


Offline ladar

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Re: Site Closing
« Reply #9 on: Aug 13 2017, 03:37 PM »
I don't think the site is dead just being very quiet which happens from time to time.  To date the number of viewers to this topic is at 140.  It would be nice and helpful if those members could state their preference as to whether to close or not.  I don't feel it should be down to one person to make the decision.  Like others  I am not a social media user and would be really disappointed if the site closed as I have found a lot of the postings extremely helpful especially when I am going through some rough patches.

I log on regularly except when feeling really rough and have difficulty looking at computer/iPad screens.   Please reconsider and keep going.  I remember when Simon decided to hand over the reins there was a lot of talk about ways to keep the site going.  Maybe one option would be to have a volunteer manage it for a specific  length of time (one or maybe two years) and then everyone would be aware of that and hopefully it would give time for someone else to think about and preparing to take over the reins for a new period of time.  Not sure how to work out about paying the site fee, there was a lot of discussion about this previously as well when Moz took it over.

Please don't shut it down as it is a useful source of help and information and support for all us sufferers.  Keeping fingers crossed.

Linda


Offline Emma

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Re: Site Closing
« Reply #10 on: Aug 13 2017, 07:16 PM »
I would be sad if the site went. I realise I am not active on here at the moment (life is busy with 2 small people and I am about to study to become a teacher!) but I do periodically pop in and I like to know the site is here.
It was a life line for me when things were at their worst, however i can understand if the site was closed x
Be happy - Keep smiling :-D

Offline NEWOSA65

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Re: Site Closing
« Reply #11 on: Aug 14 2017, 10:37 PM »
Hi folks,
Its hard to believe that its been about 4 years since I decided to leave MDUK.
Without this place I would not have known anything about Menieres and the treatments that are available.  My Audiologist had no interest in me despite the fact that i was having 3 major attacks per week.  Those days were horrendous and when I joined this site in 2007 it was totally life changing for me!  Not only that I met my other half on here and we now have the most gorgeous 6yr old little boy! So good came out of bad for me!
Emma - best wishes with your plans to be a teacher... my other half is a teacher and has been for 13 years now.  I must warn you that she sits till midnight most nights planning and preparing the lessons for next day... lol seriously though, good luck with it.
Simon

Offline chrissieg

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Re: Site Closing
« Reply #12 on: Aug 22 2017, 12:20 PM »
 I too would be sad to see the demise of this site. I still check regularly, not every day any more but at least once a week. We do need new members though as that is the  most useful resource- when first diagnosed and fearing all the bad news out there.
I recently had an annual medication revue for my Serc. The young GP had absolutely no idea of the nature of MD. He was even surprised that sufferers experience tinnitus with it. God help the patient who goes to him for advice when diagnosed. We could benefit from advertising the site for advice and support at ENT clinics.
This was a godsend for me initially- knowing you are not alone, reading that your life was not over , finding survival tips, reading about new measures and just the general good natured support.

Thank you
Chrissie
Chrissieg

Offline Spinner

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Re: Site Closing
« Reply #13 on: Aug 22 2017, 08:02 PM »
I've mentioned before that I still think people prefer to post in the privacy of a closed facebook group rather than a public site like this.

It is possible to create a members only area on here, and I would be happy to create that, but others thought it was a bad idea last time I offered to do this a couple of years ago, so without any support I didn't bother !


Offline ahammond

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Re: Site Closing
« Reply #14 on: Aug 23 2017, 08:56 AM »
Whilst i am loathe to criticise doctors in general I have to admit that I am less than impressed with the level of knowledge shown by both  my G P and the specialist I was seeing. The specialist just did not seem to understand what MD was all about and he had me doing various tests for balance and ear disorders, which he is a spcialist in but which are not really relevant to the vertigo of MD. Fortunately for the sake of my travel insurance he put me down as sufering from some wierdly named syndrome which my travel insurance company had never heard of either and so did not increase my premium. I used to go to see him every  six months but at my suggestion as the worst of my symptoms had stopped I no longer go to see him. As far as I could gather the visits were doing no good at all. I would spend two hours sitting in various corridors in my local hospital for one hearing check the results of which I would question as every time I have a hearing test I get slightly better results purely through practice.  I would then have a two minute consultation which merely consisted of asking about the hearing tests and that was it.

From information gathered from this and other sites I heard about cinnarizine/dimenhydrinate tablets sold under the trade name Arlevert and which are the treatment most commonly used in America.  At my request my GP who had never heard of them  put me on these tablets  and for me they worked wonders. Stopping the vertigo attacks within weeks. The only response fom my specialist was to recommend I cut the dosage to two a day from three. Apart from that I have had no medical advice at all about the tablets. Since I have been sympton free for over two years now apart fom the rusty neck and a few other minor symptoms that we all get I have reduced the tablets on my own initiative to one a day for the past few months  and will soon be stopping them altogether if I suffer no adverse reactions.  I still have tinutis but I had that even before my first ever attack of MD many years ago. Luckily it is livable with and the other symptoms are gradually fading with time.

I do not know if my own experience will be of any help but maybe somebody may find it of use.

Offline ladar

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Re: Site Closing
« Reply #15 on: Aug 23 2017, 02:44 PM »
My consultant is not too happy about the number of  tablets I take which includes  Arlevert which I learnt about through this site and take 1 tablet twice a day and also  take betahistine - 3 tablets three times a day.    I sometimes wonder how much benefit there is from the various tablets but guess the only way to find out is to stop them altogether but then realise I don't want to take the risk and be back at square one and then having to build up any benefits again.

I also learnt about prochlorperazine buccal through the this site and use them when I feel a vertigo attack is imminent or feel very dizzy and spaced out and these help to alleviate the symptoms (but not always).   Because they need to be dissolved between the gum and cheek they work quicker than tablets that are swallowed whole (such as stemetil).  They are also supposed to prevent sickness during  a vertigo attack but it is not always successful.

Linda

Offline Beckybec

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Re: Site Closing
« Reply #16 on: Aug 23 2017, 08:32 PM »
I love this site, it has been a great help to me over the years and helped me feel not so alone.
I hardly ever post though so I understand if it has to close.
Facebook is an alternative I suppose.
Thank you to everyone involved over the years ❤

Offline NEWOSA65

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Re: Site (not) Closing
« Reply #17 on: Aug 23 2017, 10:45 PM »
Hi Linda,
The problem is that no matter what tablet you take or how much you take, they will not prevent the attacks from coming on.  The term ''anti vertigo'' tablets is a complete joke!
I reached a stage where I just couldn't plan anything, driving was restricted etc and couldn't live any longer like that!
So, the attacks had to be stopped!  It was the best move I ever made! 
Most tablets for Menieres are fine to take over the long term! But you need to ask yourself: how much worse would your life be if you discontinued the meds altogether?
Best wishes,
Simon x