Author Topic: Hi I'm new here.  (Read 2447 times)

Offline Silver Fox

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Hi I'm new here.
« on: Sep 16 2017, 12:16 PM »
Hi to all.
Having being diagnosed with Menieres after suffering for about four years I now have a date for the steroid injection.
Could I ask what are the expected after effects of this from anyone who has gone down this route?
Regards
Ed

Offline sylvespa

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Re: Hi I'm new here.
« Reply #1 on: Sep 16 2017, 09:08 PM »
Evening Ed,

I was diagnosed with Bilateral Meniere's nearly two years ago and have just had my 2nd lot of of steroid injections in each ear.

The experience definitely varies from person to person and I also experienced differing levels of discomfort each time.

I also had grommets inserted under GA to heal with future injections.

Overall I found the pain straight after pretty unpleasant and quite uncomfortable, this lasted for about 7 hours.   I then found throughout the following week my balance was completely out of sorts and I felt generally pretty lousy.  Three weeks on from my last injections I'm feeling ok and overall I'm glad I went through it.

I'm not sure I'll continue to have the injections and am going back up to Leicester to see Professor Rea for a follow-up appointment and to discuss surgery. I was originally referred to him by my Consultant here in Cornwall last year and it was Prof Rea who diagnosed me Bilateral.

My advice would be to definitely give steroids a try as I know the results for some people are pretty amazing and not everyone has the same experience as I did. 

Like I said, I do feel there has been some benefit, although not enough to stop me from pursuing surgical options with Prof Rea.

Good Luck!
Paul

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #2 on: Sep 16 2017, 10:39 PM »
Thanks for the reply. Can only imagine what it must be like to have bilateral Menieres as its bad enough in my right ear. Your after effects sound quite bad I've my fingers crossed for a smoother time.
I've a date at the end of the month for my injection so will post how it goes for me.
Regards
Ed

Offline sylvespa

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Re: Hi I'm new here.
« Reply #3 on: Sep 16 2017, 10:51 PM »
Well it definitely is different for everyone, as is Meniere's! Best of luck!

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #4 on: Sep 28 2017, 07:04 PM »
Update on my injection. Had the injection today carried out at Stafford County Hospital, my treatment and care were first class.
Only pain (if I can call it that) was a small scratch when the anesthetic was administered. When the steroid was injected there was no pain only a bubbling sensation.
Once the procedure was done I had to lie for 30mins to give the steroid time to be absorbed. Then once I was up to get dressed did I feel a little woozy for a couple of hours.
Once home I slept for around three hours. Then felt ok.
Informed by the consultant that I should feel a difference in two the three days.
Fingers crossed hope he's right.
Ed

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #5 on: Oct 05 2017, 03:16 PM »
Well it's been a week since my injection. The consultant said I should notice a difference in two to three days?
Not sure what difference I should be noticing as I'm still experiencing tinnitus, reduced hearing and a fullness or pressure in my ear. Only time will tell if I have any more dizziness and vomiting spells.
I would appreciate any feed back from others whom have had the steroid injection and their after effects.
Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #6 on: Oct 05 2017, 06:12 PM »
I've had a number of injections ams have found it can take up to 4 weeks for it to settle down. Hang in there

MissCheeva

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #7 on: Oct 05 2017, 08:11 PM »
Thanks MissCheeva could you tell me what differences you noticed after as you say when it's settled down?
Regards
Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #8 on: Oct 06 2017, 08:38 AM »
Well my hearing improved and the vertigo attacks stopped.  I do remember thinking "this isn't working" as I had a couple of attacks in the weeks after.  I remember trying to get hold of the consultants secretary to get to see the consultant (which can take a couple of weeks of ringing) and giving up as it gradually got better.  My balance was off for a while too, but over time that improved.  I am bilateral so I have had different experiences with each ear.  My left was fairly straight forward and after a few weeks I was great.  My right ear I went back for a second injection and that worked for one year.  The next year I had 2 injections and a grommet fitted to fix me. 

HTH
MissCheeva

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #9 on: Nov 05 2017, 11:07 AM »
Update on my experience of my first steroid injection which was on the 28th September. Everything seemed to be going well until 23rd October when I had a mild attack, followed by very bad attacks on the 28th October and again on the 2nd November. I'm back for a follow up with my consultant on the 9th so hopefully he'll get me in for a second injection asap. Then fingers crossed this time it will work?
I am wondering when he will call it a day and go for the injection to kill off the balance mechanism? Anyone else been in the position?

Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #10 on: Nov 05 2017, 06:09 PM »
Hi Ed,

I have had quite a few injections and had to have 2, a month apart, in my right ear.  It did work for about 6 months and then we did the injections again with a grommet.  This combination seems to work pretty well for me.  The point is that there are other options so don't get disheartened this early in the game. 

MissCheeva

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #11 on: Nov 06 2017, 02:18 PM »
Thanks for your reply and support MissCheeva I think I've a long road to travel yet. So I'm still hoping for a solution.

Ed

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #12 on: Nov 10 2017, 04:32 PM »
Ok I've seen my consultant yesterday and I'm now down for another injection within the next three weeks.
He did comment that if this one does not work he will the next time, in his words operated and lift the ear drum then pack behind it soaking the packing material with the steroid. This allowing longer contact for the steroid to work.
Has anyone else had this done? If so how was it for you.

Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #13 on: Nov 13 2017, 04:05 PM »
Hi Ed,

No I have not heard of that nor anyone having had that done.  I will be interested to hear how it pans out.  Has he mentioned grommets at all?  They don't require surgery and can be done under local anesthetic (uncomfortable and not pain free, but not excrutiating for me). 

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #14 on: Nov 14 2017, 07:27 PM »
Hi MissCheeva
Grommets have never been mentioned.
Are these used to release the pressure build up which cause the imbalance leading to vertigo?

Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #15 on: Nov 15 2017, 09:18 AM »
Yes I beleive that is the theory behind it.  It helps to rebalance the air pressure in the inner ear.  It works for some and not for others.  Mine took a few months before I got the full benefit.

MissCheeva

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #16 on: Dec 01 2017, 10:08 AM »
Well I had my second steroid injection yesterday. All went well just have to wait and see if this one works? Fingers crossed.

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #17 on: Dec 15 2017, 08:47 AM »
Hey Ed,

How are you?  Have you noticed any improvement yet?  To be fair it took me about a month and a bit before it all stopped.

MissCheeva

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #18 on: Dec 16 2017, 11:59 PM »
Hi MissCheeva since my last injection Iíve suffered five attacks two being quite bad each lasting 24hours. Three more lasting a couple of hours each. Iím back to see my consultant on the 28th. So it is looking like I might be going onto the next stage of packing behind the eardrum. Iíll try to keep posting.
Merry Christmas to all.
Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #19 on: Jan 12 2018, 05:19 PM »
How did your appointment on the 28th go?  Any improvements?

MissCheeva

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #20 on: Jan 13 2018, 04:06 PM »
Hi MissCheeva thanks for the enquiry. Unfortunately I was unable to attend due to a very bad attack. Slept for 18 hours once the dizziness and vomiting stopped. However my wife kept the appointment with the consultant and Iím booked in for the operation on 8th February so fingers crossed.

Ed

Offline NEWOSA65

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Re: Hi I'm new here.
« Reply #21 on: Jan 15 2018, 08:23 AM »
Hi Ed,
Problem is that in some cases the infusion doesnt enter the inner ear so there is no change. 
I thiunk if i were as bad as you - and you do sound to be suffering quite badly - I would be looking at low dose gentamicin infusions as this is known to make a difference unlike the steroids which only work for for a few of us.  However in both cases, the infusion has to enter the inner ear.
If you need any further help please ask - I could write a book on this illness.
Simon

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #22 on: Jan 15 2018, 03:18 PM »
Hi Ed,

I am sorry to hear that you are still suffering.  At least you have a date for the op.  I hope it works for you.

Diana

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #23 on: Jan 15 2018, 05:11 PM »
Hi Ed,
Problem is that in some cases the infusion doesnt enter the inner ear so there is no change. 
I thiunk if i were as bad as you - and you do sound to be suffering quite badly - I would be looking at low dose gentamicin infusions as this is known to make a difference unlike the steroids which only work for for a few of us.  However in both cases, the infusion has to enter the inner ear.
If you need any further help please ask - I could write a book on this illness.
Simon
Thanks Simon. Question is gentamicin the one that kills off the balance mechanism? If it is thatís my next step if the steroids fail to work.
Ed

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #24 on: Feb 09 2018, 03:06 PM »
Ok update I had my op yesterday after a week of nine attacks. So was a little worried my op would not go ahead, but it did.
So after two failed attempts of steroid injections this time they have packed behind the eardrum with a dissolvable impregnated packing. All went well despite that I started to come round halfway through the procedure so had to have more sedative which lead to me sleeping for four hours after the op.
When I did come round the pain was quite bad but the pain relief worked well. Time will tell if this works and Iím feeling quite positive as Iím good today. Just hope it continues.
If anyone else has had this procedure Iíd be interested in your experience?

Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #25 on: Feb 12 2018, 09:20 AM »
Hi Ed,

Well I am glad that you had the procedure.  I hope that it works for you I really do.  Please do update us as it is helpful for us to hear how different procedures work for people.

Many thanks
MissCheeva

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #26 on: Feb 16 2018, 08:47 AM »
Well one week on from my op on 8th February.
Friday and Saturday I felt great all symptoms had gone I was feeling really hopeful.
However Sunday that old feeling of nauseous was back, Monday full blown attack stuck to my bed all day. Then the rest of this week episodes lasting between ten and thirty minutes of dizziness two or four times each day.
My tinnitus has been worse, but Iím wondering if this is due to the packing in the ear canal which will be removed in another two weeks.
So will have to wait and see.

Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #27 on: Feb 16 2018, 04:32 PM »
Hi Ed,

Don't loose hope yet.  When I had the injections it took a few weeks for it to work.  I will keep my fingers and toes crossed for you .

MissCheeva

Offline Silver Fox

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Re: Hi I'm new here. Update.
« Reply #28 on: Mar 01 2018, 04:30 PM »
Three weeks now since my op.
First week after the op was not good. Couple of attacks and feeling quite down.
Second week my wife took me for a break to Kendal in the Lake District. The weather was good the hotel excellent and it was a stress free time. I believe that this helped a lot as towards the end of the week I was feeling more like my old self. No nausea or fuzzy head. Still got the tinnitus but able to cope much better without the other symptoms.
So my consultant today to have the packing remains removed and check the op site had healed. He was very optimistic that I will only improve. So fingers crossed all seems to be going well.
Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #29 on: Mar 23 2018, 10:13 AM »
That is great news.  I really hope that you are still feeling the benefits.

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #30 on: Mar 23 2018, 10:11 PM »
Thanks Miss Cheeva,
Had the odd day when Iíve felt tired other than that Iím much better. Only the tinnitus and reduced hearing to cope with. 😁

Ed

Offline MissCheeva

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Re: Hi I'm new here.
« Reply #31 on: Mar 25 2018, 08:15 PM »
Hi Ed,

I have always found that, in comparison to the hideousness of vertigo, hearing loss and tinnitus is not that bad.  Saying that it is still horrid.  If you are struggling with the hearing I found that lip reading lessons helped me feel less helpless and like I was doing something positive.

HTH
MissCheeva

Offline ahammond

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Re: Hi I'm new here.
« Reply #32 on: Mar 26 2018, 07:42 AM »
I do not know how bad your tinnitus is but it is something I had before MD showed its ugly face. Just recently my tinnitus has got a bit worse. On reading up I found that one of the aggravating causes is asprin. I often took asprin for headaches and joint pains instead of paracetamol etc. as I thought with it being a more natural drug  it would be less harmful. So now I avoid that as well as the usual suspects for MD.

Offline milady

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Re: Hi I'm new here.
« Reply #33 on: Mar 26 2018, 07:14 PM »
Quote
in comparison to the hideousness of vertigo, hearing loss and tinnitus is not that bad

I'll second that.
I did a lipreading course some years ago - long before vertigo appeared. It is quite hard work to start with and you have to persevere. I rely on my hearing aids and a certain bolshie attitude to people who turn away while they're talking, hide behind their hands, talk too fast etc etc. I tell them I can't hear/understand and ask them to try again, properly (but I'm a bit more polite than that!). The trouble is deafness is invisible, and for some reason regarded as a joke ::).

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #34 on: Mar 28 2018, 06:01 PM »
Thanks for the suggestions. I use a standard NHS earring aid at the moment and to be honest itís rubbish. However my consultant recommended a company called Holt Hearing. Apparently there are hearing aids now available that help counter the effect of tinnitus. So Iím looking onto booking an appointment to see if they can help.
With regard to aspirin I donít take it but I am now on warfarin for life after suffering three DVTís. So not sure if this has an effect on my tinnitus?
Ed

Offline milady

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Re: Hi I'm new here.
« Reply #35 on: Mar 28 2018, 07:10 PM »
I've had NHS hearing aids for years. The change from analogue to digital was an improvement, as was getting 2. The ones I have are  Siemens Octiv SP+ which do a lot more than the original ones, though they still don't cook the dinner or do the housework, so there is still room for further development!

Offline Gatzby

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Re: Hi I'm new here.
« Reply #36 on: Mar 29 2018, 07:54 PM »
My hearing aid is a Siemens Teneo S+ provided by the NHS.I find it helps a great deal with my pulsatile tinnitus .Keep your money in your pocket  :D

now where's my duster !!
God is a figment of the imagination according to Stephen Hawking and I agree with him.

Offline Silver Fox

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Re: Hi I'm new here.
« Reply #37 on: Mar 29 2018, 09:38 PM »
Thanks Gatzby Iíll enquire at my next appointment and ask if that model is available through our NHS trust. Could be that different trusts use different makes of hearing aid.
Ed