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Author Topic: Steroid Injections  (Read 18066 times)

Offline walkingstick

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Steroid Injections
« on: Apr 08 2015, 11:24 AM »
Hi everyone,

I am starting the steroid injections (intratympanic dexamethasone) next Tuesday and wondered about posting my experience here on the forum if it would be helpful to others. I will have 4 injections every Tuesday for 4 weeks. This is the first treatment for MD I have had after a year and a half of some kind of hell, I haven't been able to work and have constant symptoms so severe that I can't function very well. The longest I have gone without a vertigo attack is about 14 weeks but that was months and months ago unfortunately, been stuck in a bad patch for at least 3 months again now but overall I cannot say I've had any remissions AT ALL :( You might think I'd be so happy to start the injections but I'm really scared!

Best wishes

Offline Penny1871

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Re: Steroid Injections
« Reply #1 on: Apr 08 2015, 08:55 PM »
Hello, I'm sure your experience of the steroid injections would be helpful to others.  I had these injections myself almost 2 years ago and they made a big difference to me so hope they make a difference to you too.  The injections themselves are pain free as your ENT should use an anaesthetic cream in your ear prior to injecting unless you have a grommet in place in which case they might not.  Hope all goes well next Tuesday and that you get some relief from the vertigo attacks and all that goes with them.
Best wishes,
Penny

Offline judym

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Re: Steroid Injections
« Reply #2 on: Apr 13 2015, 02:11 AM »
Nothing to fear about injections - local anaesthetic makes it painless (it just feels cold).
Hi
Like you, I had a very rough time with frequent vertigo  - no change in diet/medication had any effect. Life was unbearable. I initially had a single injection. Felt a bit dizzy and 'odd' the day after and then woke up with no tinnitus/no vertigo/walked in a straight line for two weeks. Depressingly it all came back - follow-up appointment delayed. Back to square one!
In Feb I was given two injections, one week apart. This time effect was less dramatic but no vertigo/high-pitched tinnitus for four weeks. Now back to square one - waiting for follow-up appointment in June. I'm not sure NHS will fund any more but I'd be happy to pay to get back to good times.

If you're having four injections and it has an effect (we're all different!), logic suggests it should give you relief for a long time - hopefully for ever. Good luck - take each day as it comes and anjoy!

Offline walkingstick

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Re: Steroid Injections
« Reply #3 on: Apr 15 2015, 01:48 PM »
Hi there,

So I had my first steroid injection yesterday and this was my experience:

The appointment ran late so lots of time for anxiety to build further and sitting in a busy, noisy waiting room is one of my least favourite past times since having MD! I was given an anaesthetic cream to numb my ear and had to wait 15 mins for this to start working, then laying on my back but with head turned to one side (I didn't have to lay flat though thankfully as don't find it easy) had the cream sucked out of my ear. It was quite a loud noise and felt a bit uncomfortable at times, then the injection. It was quite quick but did make me go in to a spin straight afterwards BUT this did only last less than 15 seconds - thankfully. I had my partner there with me so he helped by holding my hand and trying to keep me calm. I had to try to lay still in this position for 20 mins. I can't say this didn't hurt, my ear was stinging and felt itchy for 10 mins, not too bad but I was very anxious by then as it was the first one and I just didn't know what to expect. Perhaps the cream could have been left in for a bit longer as I had hoped for a pain free time! I then went home feeling quite shell shocked :o

It is very hard as even though I was in the ENT department, I don't think they really understand just how anxious it can be for patients, for me just laying on a bed up high is enough as with my symptoms I feel as though I will roll off the bed, the room is somehow sliding away from me and the walls are moving in on me - and they seemed surprised that I was a bit tense  :-[

My consultant told me that the injections usually help 80% of patients with MD, some feel OK for a while then have the "biggest spin of their lives" then really improve after that - mmmmmm! He also seems to stress that the injections should help with reducing the vertigo attacks rather than day to day symptoms but I guess if you have less vertigo, in time other symptoms could improve. He also advised me to try to keep an open mind, try to think positively about a month of treatment rather than focussing on how long I have been ill - easier said than done though.

Today, I feel no worse but neither no better, my hearing, tinnitus (and pulsatile tinnitus) balance, dizzy levels are what I usually experience but it is early days.

I will continue to post as and when.






Offline Ashley

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Re: Steroid Injections
« Reply #4 on: Apr 15 2015, 05:30 PM »
Hi there walkingstick
I can certainly appreciate how anxiety-inducing the whole thing must have been. You have my complete sympathy! I'm glad you had your partner there for moral support. Doing those things alone definitely makes it worse.
Crossing my fingers for you that the outcome is good. Here's to you seeing a reduction in symptoms and especially the vertigo attacks.
Take care and keeping positive with you  ;)
Ashley.

Offline poppet3872

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Re: Steroid Injections
« Reply #5 on: Apr 15 2015, 05:58 PM »
I have a consultant appointment on Friday and am going to broach the subject of steroid injections although consultant didn't seem to feel this was going to help last time we discussed it x

Offline walkingstick

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Re: Steroid Injections
« Reply #6 on: Apr 15 2015, 06:32 PM »
Thanks for all responses and encouragement, I need it  :-[

I should say that my consultant has done trials with the steroid injections and MD is one of his specialist fields so he knows more about it than the few other consultants I have seen. I think I will post separately sometime about what has been said to be about anxiety and MD as it keep coming up at my appointments but feel it is a whole different discussion to be had  :(

Thanks again!


Offline Emma

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Re: Steroid Injections
« Reply #7 on: Apr 16 2015, 08:16 PM »
I have a steroid injection every 3 months or so and since I started them over a year ago I have had hardly any symptoms (I can always tell when it is time for another injection!) they are not painful at all - I find it quite a rest as you just have to lie there for 15 minutes (I have a 2 year old - 15 minute peace is unheard of!) I hope you get some relief x
Be happy - Keep smiling :-D

Offline Emma

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Re: Steroid Injections
« Reply #8 on: Apr 16 2015, 08:18 PM »
Just having a read through other posts - I have a t-tube in my effected ear hence being painless as the steroid go directly through this - it may be worth looking into in the future x
Be happy - Keep smiling :-D

Offline Elaine

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Re: Steroid Injections
« Reply #9 on: Apr 19 2015, 10:27 PM »
Same as Emma .I'm like a new woman each time I've had them and I know when I'm ready for the next one too ! My consultant has had trouble using the T tube in my ear as there's no room for manoeuvre behind it and the injection bounced back again so he's putting local on the drum and going through the drum .Make sure you lie absolutely still when you have them ,lie still for at least half an hour and I avoid bending forward for several hours afterwards to make sure it doesn't move out of where it's meant to be

Offline walkingstick

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Re: Steroid Injections
« Reply #10 on: Apr 20 2015, 10:12 AM »
Hi Elaine and Emma,

It sounds as though you notice an improvement straight away and you have regular 'boosts', guess it depends which consultant you have as to how often they are willing to give the injections and what they feel is appropriate. I still just feel the same, I wasn't told I would suddenly feel OK though?????? :(

Walkingstick

Offline Elaine

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Re: Steroid Injections
« Reply #11 on: Apr 20 2015, 01:39 PM »
How long do you lie there for after they've done them ? I also notice that if they don't make me spin he might not have got the right spot and they won't work as well but that's just me .How often have you had them ? There are different protocols and some consultants prefer to do one injection each week for 3 or 4 weeks then see how they go .They won't tell you you'll feel ok straight away as not everyone does .I do but then sometimes my right ear kicks out a defiant mini attack a couple of days later as it settles in then I'm ok .
Might be worth you having a chat with the consultant and asking if you could try one a week for 3 weeks .Of course it will also depend on clinic time ....

Offline walkingstick

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Re: Steroid Injections
« Reply #12 on: Apr 20 2015, 02:08 PM »
Hi - yes, I've been posting my experience and I've only had one so far, 2nd tomorrow, I'm having x4 every week for a month

Offline Elaine

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Re: Steroid Injections
« Reply #13 on: Apr 20 2015, 11:04 PM »
Ah right .Hope they work for you

Offline walkingstick

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Re: Steroid Injections
« Reply #14 on: Apr 22 2015, 10:32 AM »
Hi there,

2nd steroid injection experience:

No appointment time wait yesterday which really helped and was given longer (half an hour) for the anaesthetic cream to work which did indeed make a difference to last time, it hurt less. I did get very anxious again and same comments about how stiff and tense my neck looked - really????!!!!! Yours would too, after a year and a half of these symptoms!!!! Sorry a bit sarcastic! BUT somehow got through it and although can't say it was pleasant, it was a bit better than my first one and I also didn't spin as much this time. I just find it very hard to lay down and still in that position (had a bout 30mins this time) as I really do feel like I will roll off the bed. My consultant said they use the same hole each time to inject which I think also made it less painful this time.

I've noticed both times that a small amount of the injected drug can be tasted in the back of the throat for a short time afterwards, nothing major though and both evenings I get a sore throat but not there the next day.

I feel a bit more wobbly today and not great. I still don't really know what to expect as it really seems everyone is different but I can't help feeling disappointed at this stage, I was hoping to feel a little bit better by the 2nd one but perhaps this just isn't the way it goes.

Best wishes,
Walkingstick




Offline MissCheeva

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Re: Steroid Injections
« Reply #15 on: Apr 22 2015, 12:02 PM »
Keep up posting your experiance please.  I have been offered, and am contemplating having, the injections.  It is helping me understand what the whole procedure is about.

Many thanks
MissCheeva

Offline Elaine

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Re: Steroid Injections
« Reply #16 on: Apr 24 2015, 03:48 PM »
I am armed with tissues before they start then anything that drips into my throat is instantaneously spat out onto the tissue .You're right it does taste nasty !

Offline walkingstick

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Re: Steroid Injections
« Reply #17 on: Apr 28 2015, 07:26 PM »
Hi All,

Tuesdays come around far too quickly for me at the moment! This is my Tuesday face  :-\

Injection number 3 was about the same as my first one overall except that again, as I was given longer for the anaesthetic cream to work so not painful just unpleasant. Unfortunately I had a 40 minute wait before even having the cream this week as very busy in ENT so anxiety built up again. Another 30 minute wait before the actual injection. I did spin again just like the first time but it was very brief and calmed down quickly again after about 30 secs - I think it is just a shock to the ear first then me second! I wonder why last week was a bit better!!!

One thing I'd like to emphasise to anyone considering this treatment is a bit like I said in my first post but my consultant said again today how these injections can help with MD - I have damage to my left side so he explained it like flying a plane with one engine working OK, the other playing up and not even consistently playing up, giving out an on/off signal so my brain and balance are continuously confused and struggling along and never quite 'get it'. The injections should help reduce the acute vertigo and vomiting attacks so don't expect a sudden improvement with day to day symptoms or to suddenly feel better just like that. VRT becomes even more important to do now and after the injections as it helps the brain compensate and should help with the day to day symptoms over TIME. So you have to stop the big attacks before other things will improve. I have done VRT religiously but understand that my vestibular problem is unstable - hopefully the injections can help make my ear more stable so the VRT can work better so I can in turn feel better. I think I was being a bit impatient to feel something so it has reassured me a bit. So I am going to get another appointment in ENT to have my VRT updated.

I know some people have posted that they feel better straight after the injections and have them regularly as a sort of 'top up' and notice a difference straight away but this is not my experience so far nor my consultant's from what he said but as we all know by now on this forum, we are all different  ;)

Bye for now,
Walkingstick



Offline walkingstick

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Re: Steroid Injections
« Reply #18 on: May 02 2015, 10:34 AM »
Hi,

Not sure if these posts are of use but was going to add that I do notice that my hearing goes down after the injections then returns to what it was 2-3 days afterwards, no idea why this is but this time it was significantly down so was getting a bit worried.

Also I've not been able to wear my hearing aid since the last injection as it has started whistling constantly! My partner took it to the hearing aid clinic but they said they wanted to see me and didn't think it was a fault in the actual aid so will have to chase this up. Finding it difficult not to wear it as it does really help mask tinnitus and white noise. Will have to mention it when I go for the last injection on Tuesday, maybe there is a reason it is not sitting right in my ear now......

Also as the steroid injections are to help reduce big spins, I should say that my last big vertigo attack was early March and I started the injections on April 14th.

Walkingstick

Offline The Wobbler

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Re: Steroid Injections
« Reply #19 on: May 02 2015, 07:52 PM »
All feedback from treatments whether novel, NHS prescribed, bogus, wing and a prayer etc. are gratefully received.  We all need straws to clutch at....because searching for ‘the right straw’ is what dealing with this damned condition is all about.

Good luck with the steroids.  Keep us posted.

Offline walkingstick

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Re: Steroid Injections
« Reply #20 on: May 06 2015, 11:46 AM »
Thanks Wobbler  :)

So I had my 4th and last injection yesterday. I have given up hoping for no waits in ENT - an hour yesterday with a waiting room packed with children and babies  :P

Felt like I knew what to expect and you do too by now! Nothing new to report but I did the mini spin for about 30 seconds immediately after the injection. Now I trust that is it very temporary. My consultant will see me again in 3 months but I will continue to see an audiologist for VRT updates, and she will update him, starting again on Tuesday. My consultant said that some patients experience a big spin 4-5 weeks after the injections and this is not a bad thing as those that do seem to then make better progress - a double edged sword! sorry if I am repeating any of this. I will continue to post and let you know how I get on over the next 3 months, I feel like I have improved minimally since starting the injections as have noticed I am trying to do a bit more though nothing to shout about and I know this can happen without spins naturally anyway but watch this space  :blank:

One thing I will say though for those of you who are anxious re trying the injections: if I can get through it then you can as I am VERY anxious so I hope that gives someone strength. Even the consultant said he thought I had coped really well - even though I felt I didn't!!!! One thing that did help me in the waiting room yesterday was doing mindless word search puzzles which helped distract me slightly - worth a try for anyone who hates the wait too.

Best wishes,
Walkingstick

Offline walkingstick

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Re: Steroid Injections
« Reply #21 on: May 06 2015, 11:56 AM »
PS - meant to add that the issue with my hearing aid resolved itself so wasn't connected to the injections, well it may have changed something in my ear temporarily so the tube wasn't sitting properly but all back to normal now.

Offline walkingstick

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Re: Steroid Injections
« Reply #22 on: May 09 2015, 09:36 AM »
Just a mini post as I feel quite lonely and hopeless - been feeling much worse the last 3 days and hard to keep going, turning my head feels very bad, due to the catch up feeling, feels like my head is left behind when I move it or change the direction of my vision  :'(

Walkingstick

Offline The Wobbler

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Re: Steroid Injections
« Reply #23 on: May 09 2015, 12:43 PM »
Sorry, it’s not my department to dispense supportive platitudes, hopefully someone will be along soon.  In the meantime my advice would be to remain British, maintain a stiff upper lip, and keep going.  I mean what is the worst that can happen with MD?  OK apart from the vertigo, tinnitus, ear fullness, deafness and brain fog....  ;)

suzygirl

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Re: Steroid Injections
« Reply #24 on: May 10 2015, 07:11 PM »
I am sorry to hear this, I hate this feeling.  Lets hope it means that the injections are working and that things will settle down.  I am sure this awful weather can't be helping much.

Take care.

Offline walkingstick

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Re: Steroid Injections
« Reply #25 on: May 11 2015, 10:00 AM »
Hi there,

I had some kind of mini attack last night, I don't really know how to describe it but it was my usual pre-vertigo attack scenario, something just suddenly changed in my ear, broke out in a sweat, ear went quiet (couldn't hear my usual pulsatile tinnitus), hearing went down further, I had the what I call (ha ha to any Miranda fans) 'earthquake' vision, panic set in and all other symptoms more intense, needed help to get to the bathroom, moving my head felt much worse, I laid down on the bed and stayed there - but this time I didn't go in to a full vertigo spin (occasionally I have had these sort of attacks where no vertigo comes but the pre symptoms do but only 2-3 times)

Just laid really still, tried to calm my breathing but the vertigo didn't come, eventually fell asleep and back to my usual level of symptoms this morning but shaken and yet again my confidence has been rocked - now I'm wondering was it the steroid injections that prevented a full blown spin or from what my consultant said, it could be likely that I will have another big spin at some point but it was a bit earlier than his prediction, is it a sign that a bigger spin is around the corner? Or the steroid injections are doing nothing and I'm just not going to get better!  :'( After all this time with no breaks I don't even feel like a normal MD patient as left wondering why I don't recover in between attacks, I'll be honest, I didn't see the point of getting up today.

Walkingstick

Offline walkingstick

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Re: Steroid Injections
« Reply #26 on: May 12 2015, 04:52 PM »
Hi,

I had all my VRT exercises reviewed today and it was long overdue - 15 weeks, the longest I have gone before an update, usually 4-6 weeks so I am hoping this might help. It was only left for so long as went through a very bad patch so missed an appointment then it got left for a while then started the injections so thought I'd wait until after I had those....

I feel just terrible at the moment, I wish there was someone who has had them to say I felt worse before better but have a feeling there isn't anyone.

Walkingstick.

Offline Ashley

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Re: Steroid Injections
« Reply #27 on: May 12 2015, 06:14 PM »
Hi Walkingstick
I've not had the treatment you're going through so can't offer any wisdom from experience, as they say. However, I can relate to the sense of despair and feeling like this nightmare will never end. I went through a very bad period last year and basically spent 3 months feeling extremely unwell and was mostly confined to the house (I don't work anyway). I did wonder whether I would ever recover any real freedom again….and of course…I did and in most instances you do….it's just a case of riding out the storm and keeping putting one foot in front of the other.
Wishing you well  ;)
Ashley

Offline walkingstick

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Re: Steroid Injections
« Reply #28 on: May 12 2015, 06:40 PM »
Oh thanks Ashley :)

I've been like that for a year and a half though!!! Beginning to wonder if I am the ODD ball  :-[ but I am hoping you are right and there will be an end to all this. Thank you for posting some encouraging words.....

One thing the Audiologist did say which no-one has ever said to me before today, was that the heaviness/pressure in my head which plagues me most days is what a lot of patients describe and is partly down to the brain not being able to take everything in as it has to work SO much harder to keep balance (almost saying where am I? Where are the doors, the floors, the walls - all day long) it doesn't have the space for extra information so that's why talking with friends/visitors, doing any extra work which involves concentration can be exhausting and make symptoms worse. Hope that helps someone else too.

Walkingstick





Offline Ashley

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Re: Steroid Injections
« Reply #29 on: May 12 2015, 07:48 PM »
No worries, Walkingstick  :). Yes, the brain is working overtime dealing with all the bad messages from the disrupted balance system. I still haven't recovered fully from last year's bad spell. I guess adjustment times will vary across everyone. But, for me, I basically just try to remain optimistic. Each day, I assume I'm a day closer to feeling a little better….
Take care
Ashley

Edit 21:00 - P.S. That's not to say I don't have days when I am thoroughly fed up and p*ssed off with it all, lol.  ;)

Offline Camily

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Re: Steroid Injections
« Reply #30 on: May 12 2015, 08:02 PM »
Dear Walkingstick

I too have not had the steroid injections but have wobbly days, today being one of them, and I think Ashley's words are so true. Thinking that tomorrow may be better and the support of my family keeps me from going mad.

Hope things improve for you. Take care.

Sally

Offline Penny1871

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Re: Steroid Injections
« Reply #31 on: May 13 2015, 09:32 PM »
I'm sorry to hear that you are feeling so low at the moment.
I've had the steroid injections and they've helped a lot.  The results weren't instant (a couple of months) and I did still get bad days (and still do) but the vertigo attacks are nothing like they used to be, thankfully, and hopefully yours will lessen too.
For me the vertigo attacks were what I hated most - I could cope with the fluctuating hearing and the pressure build up and the general unsteadiness but 16 hours of severe vertigo not being able to move a muscle, have anyone touch me or even talk to me without me being violently sick was just dire.
I've had diagnosed Meniere's for 3.5 years now and for me the combination of steroid injections, Serc (2 x16mg 3 times a day), a low salt and caffeine and alcohol free diet, plenty of sleep and stress avoidance have all made a huge difference.  I also avoid fluorescent lighting if I can and only spend a short amount of time on the computer.  Basically I have learnt what can trigger an attack for me and avoid those circumstances if I can.
I am currently not working which has helped to cut the stress enormously - not just the stress from the job itself but stress too from worrying about letting people down at work and stress from worrying that I might just have another attack at work and have people think that I've had one too many at lunchtime when they see me stagger to the loo!
I saw a VRT specialist soon after diagnosis who gave me exercises to do and also explained that up to 60% of my brain power was now focusing on keeping me upright and aware of my surroundings - something that my brain didn't really need to think about too much before!  No wonder I can't always remember things!
In the early days I had some pretty bad experiences and I can look back and laugh about them now but at the time they were extremely frightening and many a time I thought I'd never get any better.  But you do learn to cope with things and if I have an attack I know that it won't last for ever and that I'll be OKish again tomorrow.
I kept a simple diary - a basic spreadsheet - and marked each day with red for a bad day, amber for an OK day and green for a good day.  In the early days there were a large number of red days but over the months the red days lessened and I saw more amber days and then the green days started to creep in.  I've still got the spreadsheet and when I am having a low day I can refer back to it to remind myself of just how bad it was in the early days!
Whereabouts in the country are you?  Is there a local support group near you that you could get in touch with?  Are you a member of the Meniere's Society as they can send you a list of local groups?
Keep your chin up and hopefully things will get better for you soon.


Offline walkingstick

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Re: Steroid Injections
« Reply #32 on: May 15 2015, 09:57 AM »
Hi Penny,

Just wanted to thank you for taking the time to write such a long post and for your advice and experience, it was really helpful to me and I really appreciate it.

Unfortunately, I didn't find Serc helped me, I tried it in the very beginning, it made me worse, especially the nausea - ugh. Sounds similar to you - yes the vertigo attacks are the worst, any head movement, no matter how small make me be sick and also lasting hours on end.

I really like your sticker spreadsheet, I have written in my diary, bad day, very bad day and rarely bit better day but really like the idea of coloured stickers!!! :o

I am still feeling more unsettled since my last injection, another 2 minor attacks with pre attack symptoms on top of the one I posted about but I am trying to stay hopeful. Not easy when I feel like I am going backwards at the moment....

Thanks again for your support,
Walkingstick

Offline walkingstick

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Re: Steroid Injections
« Reply #33 on: May 18 2015, 04:41 PM »
Hi All,

Had another mini attack at 5am this morning and have only just got out of bed (feel as if I'm on a north sea ferry). Again, all pre attack symptoms, sweating, more uncomfortable to move head, can never quite describe just how bad my head feels! Took a buccastem and laid very still, finally managed to get back to sleep about 8am but felt dreadful all day but the true vertigo didn't come, slightly on looking to my left but not what I'm used to with attacks. Is it the injections preventing the big spins or is it because of the injections I'm having these mini attacks, hard to know. I did have a bit better day yesterday and did more than usual, maybe my brain can't cope with that yet, either way, I'm still very worried as even without the big attacks which would last hours on end, I still feel SO rotten. :-[

I still think even though i am doubtful, it is still early days regarding the injections.......

Walkingstick.

Offline jojo

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Re: Steroid Injections
« Reply #34 on: May 18 2015, 10:17 PM »
Hi Walkingstick

I have just had Gent and feeling rubbish now myself too!!  So I can sympathise with you on how you are feeling!! I had near enough a whole day in bed after vertigo/migraine on Saturday.  Still feel exhausted from it now!! The double vision is not helping matters either!!

I have not had Steroid treatment so have no idea what is like for you!! So the only advice I would suggest is to rest maybe and try not to overdo things too early!!

Take care

Jojox

 

Offline walkingstick

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Re: Steroid Injections
« Reply #35 on: May 19 2015, 09:22 AM »
Hi JoJo,

Thanks for moral support - I had been wondering how you were doing since your last post saying you'd had the gent so glad you posted. So sorry you are still struggling. From what I have read about it, it can take a while to improve and as the balance organ gets destroyed think you can feel very rough indeed. Did your consultant, advise you on what to expect afterwards so you can try to tell yourself things will gradually improve?

I am up again today at least and not feeling as bad as yesterday thank goodness.
You are not alone,
Walkingstick.

Offline walkingstick

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Re: Steroid Injections
« Reply #36 on: May 21 2015, 01:18 PM »
Hi All,

Just a mini update, I had another mini attack (without going in to a full vertigo spin) again on Tuesday afternoon, not long after posting I was up and out of bed earlier in the day! I decided to email my consultant to update him and get his view on what might be happening so thought I'd share this with you.

He basically said that because the nature of my attacks had changed in that they are not going in to vertigo attacks on top of the pre attacks symptoms, this shows that the injections are probably doing something and suppressing the vertigo (rather than the injections causing mini attacks) and he was optimistic in view of what I'd reported so far.

Mmmmmm, so I guess that makes me feel a bit better and of course I'm thankful not to have full vertigo but what I long for is an improvement in day to day symptoms so it is so hard for me to see how this is going to get better but I will try to....

Walkingstick.


Offline walkingstick

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Re: Steroid Injections
« Reply #37 on: Jun 04 2015, 03:27 PM »
Hi All,

Just thought I'd do a mini update but so wish I had something better to say. I am very low and anxious as I feel even worse than I was post injections, no more mini attacks since my last post but for the last couple of weeks just seem to get worse, my head feels like it is being crushed and I am being pulled down or to the right.

It has been a month now since the 4th injection, now beginning to wonder if it was worth it, perhaps it isn't long enough to know but I am at very low ebb and as I have had no remissions since this all started a year and a half ago, I have no hope left, I cry every day as I feel so unwell  :'(

I just don't understand why I don't get better in between attacks and I seem to be in a minority which just makes me worry more that there will be no end to this, it's so hard to keep going. It has totally robbed me of my life, I feel like giving up.

Walkingstick

Offline Elaine

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Re: Steroid Injections
« Reply #38 on: Jun 04 2015, 03:46 PM »
The thing with them is you don't know if they're worth it till you've tried them .I've had one now and again and I've also done the one a week for 3 weeks regime both of which work .I find they work better if they have made me spin during administration ,kind of like I know it's hit the spot if that makes sense .Are you unilateral or bilateral Walking Stick ? I did find in the past that a course of oral steroids helped me too .If neither of these work you might have to consider surgical options .Not sure how you feel about that but maybe have a read up in case it's suggested ? x

Offline walkingstick

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Re: Steroid Injections
« Reply #39 on: Jun 04 2015, 04:12 PM »
Hi Elaine,

Only my left ear is affected, I am only 43 though so as you just cannot tell if the other ear may become an issue, so having the gent isn't something I would want and my consultant agreed with this and said if you have the gent in one ear then you go bilateral, you are in trouble as the 'good' ear can't then take over from the bad ear. I know there are a few other surgical options........

Thanks.


Offline Elaine

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Re: Steroid Injections
« Reply #40 on: Jun 04 2015, 07:25 PM »
I refused it for similar reasons .....

Offline Penny1871

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Re: Steroid Injections
« Reply #41 on: Jun 05 2015, 02:52 PM »
So sorry to hear that you are still struggling.  Can you go back to see your consultant for advice?  Like you I wasn't ready to go down the gent/destructive route so researched other possible treatments and a different consultant and tried the Meniett Device before having steroid injections.  Are you sticking to a low salt and caffeine-free diet as I find that does help me?  What are you taking as an alternative to Serc?  I know Serc made you feel unwell but would it be worth trying that again as it does seem to be helpful to a lot of people?  Don't really know what else to suggest but really hope that you get some relief from all of this soon. It is all so exhausting but hopefully some good days will appear very soon.

Offline ladar

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Re: Steroid Injections
« Reply #42 on: Jun 05 2015, 03:31 PM »
Hi Walkingstick

I can relate to how you feel about having no let up of the symptoms between vertigo attacks.  I used to at least get a bit of rest from the fullness between vertigo attacks but now it is relentless all day every day.  I wake up exhausted and I go to bed exhausted invariably hoping for a bit of relief the next day.  Some days I can barely function because my head feels as though it is going to burst.  I am getting mini vertigo attacks (although they don't always turn into a full blown one) but even having these 'minis' throughout the day wears me out.

I have posted on here a number of times about possibly having a grommet fitted.  I have really got to the stage where I know that I need to do something even though I dont want to but each day I reach the end of my tether and think tomorrow must be better but it never is.  So I am going to have to bite the bullet at my next hospital appointment  and agree to having it done.  I am just so worried about any possible after effects.

I hope you see some improvement soon.

Linda

Offline Elaine

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Re: Steroid Injections
« Reply #43 on: Jun 05 2015, 07:51 PM »
Linda ,the grommet is easy peasy honestly .The worst thing that can happen is either it pops out again or you get an infection (they do warn you about this ).Other than that they really work for some .They're low risk to your hearing too .Hope this helps x

Offline jojo

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Re: Steroid Injections
« Reply #44 on: Jun 05 2015, 09:14 PM »
Hi Linda

I have to agree with Elaine regarding the easy peasy comment for having a grommet fitted!!  I have just had one fitted in both ears with no problems at all!!  The only thing you must remember if you have a grommet fitted is not to get water in your ear especially after the surgery.  Besides that they are pretty plain sailing to be honest.  I had one fitted in my left ear 2 years ago and that fell out at about 18 months after the op!!

In my opinion in is one of the most easiest things to do to try and help with your Menieres and the associated ear pressure.  I know having a grommet does not help all Menieres sufferers.  But, you never know it may well work for you!!

All the best

Jojox

Offline walkingstick

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Re: Steroid Injections
« Reply #45 on: Jun 06 2015, 11:46 AM »
Hi Penny,

Thanks for your post - I don't have an appointment with my consultant until mid August now but I have emailed him another update via his secretary and he usually replies so.......

I personally don't feel a link with a low salt diet, doesn't make a bit of difference although I don't have highly salty processed foods anyway and have always been caffeine free even before MD so it can't be that either! I'm glad though as I have a food intolerance with salicylates (natural aspirin) found in many foods so to restrict myself to very low salt too would just be like punishment!!!

No I only take buccastem with attacks, nothing daily, I could try Serc again but my consultant seemed quite anti that as it suppresses the vestibular system and taken long term can stop the brain re-calibrating or that is what he thought.

I am hanging on to what you said though - it took you 2 months to feel any better after the steroid injections so there is still some hope. Will let you know what my consultant says and if he wouldn't make an appointment until 3 months after the injections, this may be a clue that it could take that long to tell of any progress or not?!!

Like Linda, I have fear around other treatments having been through so much and almost can't face the prospect yet....

Best wishes,
Walkingstick.

Offline walkingstick

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Re: Steroid Injections
« Reply #46 on: Jun 06 2015, 11:54 AM »
Hi Linda,

Thanks too for your post and I'm sorry you are having such a hard time with daily symptoms too - I totally understand that  :'(

I also can recognise the feeling exhausted all day and feeling the same on waking again then going to bed wondering if it will ever change or you will feel any different. How you describe your head, like it will implode is exactly how it feels for me too and why I get so downhearted with people telling me to be positive - they would know if they were feeling that way too but they are coming at it from a feeling well perspective which seems annoying to me, especially when it is such a hard symptom to describe, when I try it sounds like no big deal!!! It is utterly debilitating.

I hope the posts re the grommet may help you decide, I was feeling the same, scared to try something else but......

Thanks for your support and I hope things ease for you too.
Best wishes,
Walkingstick.

Offline ladar

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Re: Steroid Injections
« Reply #47 on: Jun 06 2015, 04:43 PM »
Hi Elaine and Jojo

Many thanks for your positive words about grommets.  Did you get some relief from the constant fullness and pressure?  I suppose one of my fears is that I will have it done and it makes no difference.  As I said I have reached the stage where i need, rather than want, to try something and I'm sure it's not as bad as the injections.

Walkingstick - I sometimes wonder how we manage to carry on but we do so good luck for your continued recovery from the injection side effects and hope it doesn't take too much longer.

Linda

Offline walkingstick

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Re: Steroid Injections
« Reply #48 on: Jun 06 2015, 05:38 PM »
Hi Linda,

Have you had the steroid injections?

Hi Elaine and JoJo,

Can you have the grommets removed if you want to and you're not happy?

Thanks, Walkingstick.

Offline judym

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Re: Steroid Injections
« Reply #49 on: Jun 06 2015, 08:07 PM »
Can someone explain why grommets are put in prior to steroid injections. I've had steroid injections twice without grommets - effective for a time but vertigo now back with a vengeance. Do grommets make injections more effective?