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Author Topic: 3 weeks of freedom but down to ear with a very large bump  (Read 3803 times)

Offline Jane G

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Had a fantastic 3 weeks spin free.  My tinnitus and hearing loss was still very bad but can deal with that.  However, last night at 7 pm I started having an attack, the worst I have ever had.  it lasted over 14 hours and I could do absolutely nothing to relieve the hurrendous spinning.  Normally if I look at a spot on the ceiling the room stops spinning but nothing I did last night made any difference.  it was absolutely horrible.  At 1 am I did think about calling the doctor to see if they could give me something because I just felt so desperate but didnt think they could or would come out so I just put up with it.  My 7 am this morning I was at my wits end, I felt completely out of control, none of the things I normally do to ease the symptons touched it.  I phoned the doctor because I just didnt know what else to do.  None of my tablets helped at all.  Very unhelpful receptionist almost laughed when I requested a home visit, have you tried the buccastem for the sickness etc etc (i felt like screaming).  Eventually she said I could have a home visit but it would not be until at least lunchtime.  Anyway, to cut a very long story short my hubby phoned them back and said this was not acceptable.  they said the best they could do was to prescribe cyclizine hydrocloride (not had that before) and stronger buccastem.  Took those at about 10 am and finally it eased off.  Doc rang to say they there was no point in him coming out because he would only be able to give me an injection of the cyclizine.  He did ring me again this evening  and was very pleasent but had nothing new to offer.

I feel really low and tearful, I ve got to pick myself up again and try to get over it.  I feel very alone despite the fact I have wonderful family.  I feel guilty for feeling this way and I dont know how Im guna pick myself up.  Tmrw is another day though and hopefully I will start to feel better, thanks for listening
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Offline sweety

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #1 on: Mar 10 2011, 07:17 PM »
Oh and Im so sorry you had that spin how bloody awful! When your having a good patch and it comes back it knocks your confidence BIG time ! Ive never had vertigo like you describe only on caloric tests and on the first day i got this which lasted about 20 hours and was hell on earth!
So I do know something of what your going through.
I hope a treatment plan starts working for you at some point . I dont know what your already trying ?

Good Luck and I hope thats the worst of it over for you xx

Offline Jane G

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #2 on: Mar 10 2011, 07:20 PM »
had a grommet fitted six weeks ago, jury is out on whether it is helping or hindering!  I feel better just writing down how I feel which is why the forum is my lifeline and getting replies like yours really helps, Iknow Im not alone!
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Offline SJ

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #3 on: Mar 10 2011, 07:45 PM »
Hi Jane...just asked how you were on my other post then I saw this.... :( poor you it sounds like you really had a bad one, I really hope that the new meds help - I've not heard of either but then again my doctor knows nothing about MD at all only what she has learnt through me!!
Really hope things get back onto that spin free time again for you asap
take care
SJx

PS I had a grommet and steriods in Nov and don't think its helped me at all.....

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #4 on: Mar 10 2011, 07:59 PM »
Hi Jane,

I know what its like to have attacks like you had last night, words cannot describe how bad this thing is and it makes me very angry to hear the reaction that you had from the surgery!  It just shows how this problem is played down! >:(

Anyway, i hope that you feel a little better this evening -  it tends to do more damage to me mentally rather than physically as i when things are bad i am just unable to plan anything or go anywhere and that of course is when the psychological issues begin to set in! 

Can't remember now - are you bilateral or unilateral Jane?

Keep your chin up,

Simon x

Offline Jane G

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #5 on: Mar 10 2011, 08:01 PM »
in all 3 Simon !!
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Offline jmurr

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #6 on: Mar 10 2011, 10:18 PM »
Gosh, just read this Jane. How awful for you, sounded bad, and soul destroying after feeling better for a while! I do hope things are settling for you by now and it was just a one off setback. It almost feels like you are being punished for daring to forget about the MD  a bit for a while and doing normal things without thinking about it, doesn't it!?
Some of my worst attacks seem to have been in the night and going through to the middle of the next day. It's quite exhausting isn't it, and leaves you feeling battered and vulnerable.
Take care of yourself Jane and don't feel guilty about it getting you down - you sound like the kind of person who tries to make the best of things and mostly looks on the bright side, so give yourself some time out to sulk a little about it!!!!

Jx

Offline Christina

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #7 on: Mar 10 2011, 10:24 PM »
That sounds like a bad one Jane and pretty scary too!  I am glad the GP eventually prescribed cyclizine.  It is pretty effective in my opinion and I hope you have some left over to keep in the house if this happens again.  After all those drugs, I imagine you have slept a lot recently! 

Take care Jane and I hope you feel a bit better tonight. 

Chris x
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Offline chrissieg

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #8 on: Mar 10 2011, 10:26 PM »
Hi Jane, very sorry to hear about your dreadful episode and setback.I just wanted to say that when i had 2 attacks lasting 20-24 hours, my husband called 999 rather than the doctors surgery. The ambulance/paramedics who came were lovely and seemed to think this was a legitimate use of their time. On both occasions they gave me shots (probably cyclazine as my own buccastem hadnt worked.One time they stayed until I felt Ok and then we decided together that i woudnt go to hospital. The second time i asked to go and was eventually admitted for 24 hours as A and E couldnt stop it either.This was in the early days last summer when i was also really panicky and probably making it worse but I thought people might like to know that they can use the emergency service if necessary ( and especially if the middle of the night!) and not to feel they are making a fuss. There cant be many conditions which make you feel so ill even if it passes eventually.
I hope you can rest for a few days now and start to feel brighter soon,Chrissiexx
Chrissieg

Offline Gary

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #9 on: Mar 10 2011, 11:30 PM »
I must say, apart from my first overall and severe attack in November 2009, more vertigo than Ménière’s(?) but still with the constant hearing loss and the ringing in the ear too, I’ve only had one reprise. It didn’t last for long but it was a nasty reminder that I’d wished would just…go away.

Too, have had the “rolling of the eyes” that has made me feel nauseous, it’s all a pain so I know what you’re feeling and I’m feeling for you too, so, be strong, be brave… :flowers:

Offline Gibson335

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #10 on: Mar 11 2011, 10:25 AM »
So sorry to hear about the bad attack, Jane.  It's always particularly devastating when they come after periods of respite, because it's human nature to wonder with each passing day whether it's over, and the level of hope rises, so of course when you get hit with an attack again it feels as if the world has caved in around you again.

At times like that all you can do is draw on the inner strength that has served you so well up until now.

Tony
I intend to live forever...so far so good.

Offline Jane G

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #11 on: Mar 12 2011, 10:13 AM »
thank you so so much everyone for your brilliant comments.   Im quite proud of myself today.  Yesterday I went horse racing with my hubby (longstanding arrangement).  Neither he or I thought there was anyway I was going to feel up to it.  However after spending thursday in bed I slept like an absolutel log Thursday night and I woke up much brighter on Friday morning.  The sun was out and it was quite warm so I though 'sod it' there is no way Im guna let this thing beat me.  Put on my best togs and quite a lot of make up (was not looking my best it has to be said!!!) and we had an absolutely lovely day.  We were lucky enough to have a table in the restaurant overlooking the course so I could just sit and watch in comfort which was luxury. 

Apart from feeling washed out im feeling OK today.  Im eating lots of fruit and veg along with some chocoloate of course to aid recovery (you know how it is). 

Chrissie thanks for sharing your experience, I was quite close to wanting to call an ambulance but I just didnt know whether they would think i was wasting their time but as you said if it is a cronic attack it is justifiable.  However, I have told my ears that they will not be repeating this little episode thank you very much!!  Can anyone tell me about this cyclizine hydrochloride but heard of it before?

Again thanks so much everyone, lol ::)
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Offline Elaine

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #12 on: Mar 12 2011, 01:07 PM »
Hi Jane ,
So sorry I must have missed this  :-[.
You have my total sympathies .Your attack sounds just like the one i had in august .Mine wouldn't settle and I had hubby phone NHS direct and everyone for help (mine was on BH monday so no GP  :'() .My attack lasted 8 hours and I was desperate so it must have been horrendous for you going on another 6 hours on top of that .
I'm glad you're ok now and managed the horse racing .
I've taken cyclazine (in fact I'm not great today so I've popped a pill to make sure my ears behave while I'm having a much needed hair cut this afternoon  ;)) .They are quite low dose and can be used up to 3 times a day but they're more effective to stall an attack rather than to actually calm one down .You can get it on GP prescription .
Hope this helps ,
Elaine xx

Offline Jane G

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #13 on: Mar 14 2011, 02:10 PM »
Hi all, seem to be taking a very long time to get over last weeks episode.  I have had terrible mood swings and today all I seem to do is cry.  Tried going to work but just couldnt hold it together (its worse because its open plan and it feels as if everyone is looking at me) Im sure they arent! I must have got through a whole box of tissues and its only lunchtime!!   I just feel  so frustrated by it all.  I feel so tired all the time which I know is classic after symptom.  I
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Offline SJ

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #14 on: Mar 14 2011, 02:34 PM »
Hi Jane
So sorry things are still not good. After the severity of your last attack I am not supprised that you are feeling low, it always takes time to get back on track and it was such a long lasting one it is bound to have knocked you for six. I guess you were not ready to go to work especially as you are feeling so low. Try to have some 'me' time and take things really slowly. It is so frustrating when you can't just get back on and do 'normal' things but sometimes it's good to let your body have that rest that it's asking for.
Are you due to see your consultant soon? Maybe it would be good to see them soon so that you can let them know how bad this episode was and see what your options are from here.
Take care Jane,
SJxx

Offline jmurr

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #15 on: Mar 14 2011, 03:28 PM »
Jane I am so sorry you are feeling like you are - I completely understand what you mean, especially in the work environment you describe. I think we feel very exposed and vulnerable being so disorientated and it sounds like you are pushing yourself a bit too hard and being quite hard on yourself for not meeting the standards you are setting yourself! I would imagine your sleep will have been affected and the kind of episode you had will have taken it out of you anyway, no wonder you are tearful.
Is your job full time? Are there any supportive measures in place for you to help you carry out your job?
Jx

Offline Jane G

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #16 on: Mar 14 2011, 06:30 PM »
Thanks for your posts I cant tell you how much it helps.  I did work full time but gradually Ive had to reduce my hours.  I am now supposed to work two days a week but mostly I manage two mornings.  The open plan really does not help.  I have been extremely lucky with my employer, they have been extremely patient and understanding.  they do know what happens when I get an attack because I had one there last October.  Lying on the floor and being sick everywhere is not ideal in an open place office.  However, on the plus side my boss and colleagues got to see first hand how horrible it is.   :P
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Offline Christina

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #17 on: Mar 14 2011, 06:55 PM »
Hi all, seem to be taking a very long time to get over last weeks episode.  I have had terrible mood swings and today all I seem to do is cry.  Tried going to work but just couldnt hold it together (its worse because its open plan and it feels as if everyone is looking at me) Im sure they arent! I must have got through a whole box of tissues and its only lunchtime!!   I just feel  so frustrated by it all.  I feel so tired all the time which I know is classic after symptom.  I


Hi Jane

Can I ask, does this all feel worse at certain times of the month?  Hormonal changes are notorious for setting off attacks and for making you feel low.

Chris x
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Offline Jane G

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Re: 3 weeks of freedom but down to ear with a very large bump
« Reply #18 on: Mar 16 2011, 06:06 PM »
Hi Chris, yeah it could linked to that  I suppose.  Had a really violent spin late yesterday afternoon not sure if it went off by itself of whether the cyclizine helped, anyway at least it was not as bad as the last one.  My moods are still very up and down but generally I think it has lifted.  Not done very much at all today just rested and watched the racing.  Had a friend visit this morning who Id not seem for a while which was really nice.  She is one of those people who is always very positive (just what I need at the moment).  Im just taking one day at a time.  I did mention on one of my other posts about a clinic in Germany which looks promising.

Thanks for listening

Jane  :-\
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