Hi hope you are all well. So im due to have a intratympanic steroid injection in a week to try to settle my dizzy problems that have been wreaking havoc in my life for the last 7years but continuously for the last year and wondered if anyone has had this done and what were your results?
Hi. As I’d never heard of it I had a bit of a read around the subject and now understand it is used for people with Menieres which I understand is part of your diagnosis so I guess it figures. If you use this forum’s Search facility you can pick up all the archive comments on it which you might find useful. Many seem to stem from @robsyndney and @greence. Good luck with the procedure and I do hope it offers you some relief at last. All you can do is keeping trying for a solution. Helen
Hi! I’ve had it for my sudden sensorineural hearing loss about 9 years ago, but not for my most recent MAV episode. I didn’t notice any adverse side effects at the time, I think I had 2 or 3 injections but I can’t remember exactly. It may have bumped my hearing up a bit, but it didn’t do much to fix my hearing loss.
I had it done when this all first started. I got severe rotational vertigo for 1-5 minutes from the initial injection. Apparently this is pretty common. After that I didn’t really see any benefits to be honest. It’s worth a shot for you though! I hope you find some relief
OK, I’m going to give a contrarian view (sorry!):
I would get a second opinion from an oto-neuro.
I know my case may be very different but I simply left my inner ear well alone and it has slowly sorted itself out without any kind of physical intervention.
A year of chronic symptoms is not long (unfortunately) and it may be that it is simply getting rougher before it gets better (things went in a bell curve for me, getting much worse before starting to get better and almost resolving).
There is a huge temptation to want a quick fix, but I can attest that the inner ear can resolve things itself for many people, but only very very slowly. Patience rules supreme in this case, I’m afraid.
The last thing you want is to use some unproven intervention to upset things and it might even set your progress back.
Please note however my diagnoses have been MAV and Secondary Hydrops, so YMMV.
Out of interest, what aspect of your testing gave you a Menieres component of a diagnosis in addition to MAV? Do you have any low frequency hearing loss? If you are experiencing continuous symptoms that sounds more like MAV/Secondary Hydrops but I defer to professionals …
Hi. My symptoms have not just been for one year. They have been getting worse over the last 7-8 years. And this last year has been constant. Daily disequilibrium. Had recent hearing test but cant remember what frequency range i have lost on one side.
Yes symptoms have got abit better but i have not much relief atal. Anxiety does contribute to this and makes things worse but i have beaten that somewhat now and started going out etc.
Now lets not confuse matters for others reading… there are two types of injection. One is steroid based and the other is antibiotic gentamicin. The gentamicin is the one that ruins the hearing but the steroid injection does not do that. Meds are not doing much for me.
They say its Endolymphatic hydrops. I think its secondary E H if anything because i had head trauma accident a long time ago and i think its all come from that. So delayed post traumatic menieres.
I think the injection will help fingers crossed and reduce the symptoms. I dont think its the cure atal but it will help me get my life back on track i think hopefully.
What injection did you have? Theres is two types. Did it help the vertigo and dizziness?
Also how did you feel straight after the injection? Could you walk?
How are you feeling now and when did you have the injection?
I have not heard of such thing from researching. There are two types of injection to have. Which did you have? As the gentamicin ruins the hearing the other does not but both help symptoms. Apparently
Yes I know, but continuous for one year, right? I had a shorter overall experience, but similar in the sense that it was episodic, then went continuous. My ear trouble (and MAV symptoms) all come from injury too…
Why are you so confident? If you have hydrops from injury, I don’t see why an injection would improve it anatomically? The only way hydrops will resolve is by the normal process of balancing up which the body seems to do automatically anyway. By forcing more fluid into your ear I really can’t see how that will help … do they really understand what happens when you have the injection?
Its funny you say secondsry hydrops as i ve read about that somewhat and i agree as i had head trauma many years ago and its got worse over the years. I used to only have one bad vertigo episode once a year and would last a week and clear up but now its been a year and although not had bad vertigo, i have had minor episodes daily. But some horrod symptoms as follows
Nystagmus in various directions but i can however change the direction of nystag myself which is odd
I at times can get dizzy from talking to people
Crunching foods can make me dizzy
I have recently at times had sudden like electric jolt shocks to my head which practically put me to the floor but they last for seconds and i can get up foggy but somewhat normal (is that tumarkins?)
What we have to notice is theres many symptims that overlap and diagnosis is very hard i think but tue e.n.t just recently said hydrops like menieres etc.
Thing is when my symptoms clear up i feel good but its comes and goes on its own. I think its dues to head trauma as i did have a right sided temporal bone fracture.
From recent research i was think it could he superior canal dehiscence or perilymph fistula but dr reckons no its not. I do have my concerns about the injection but i have heard good reports and studies about it. Whats your thoughts anyone?? And please dont be all negative etc.
Perilymph fistula is what happens before the hydrops, it’s what causes the fluid leak and the imbalance.
This then heals and you end up with a pressure increase (the hydrops) as the perilymph pushes back against the endolymph (and your blood pressure!)
The stop start symptoms are probably the period in which the fistula is not fully healed and the pressure is fluctuating. Once it’s healed there is no way for the pressure to drop (except from natural but slow rebalancing process)
THIS is a good sign … and imho the continuous symptoms are a sign you are at this stage. Now it’s just a question of nature taking its course.
I would be conservative … you may already be on the right track.
They have not said its from injury but i think ive made my mind up that it is. Its funny that the symptoms did not start until a few years later though . Yes i agree … im confident it will help ease the pain i go through now every day like not knowing if im going to be proper dizzy by just turning my head slightly etc. Quietly confident only from ready case studies on various people who have had it done. It will not resolve the problem i dont think. It may just put it to bed though for some time. Who knows as thats why i thought i would ask around.
So what injuries did you have and whats your symtoms?
Ha thanks for the vote of confidence. I have been better this last few months but last year was a total disaster. Anxiety certainly slowed the healing down i must say.
Ive been abit more back to normal but still every day problems. I have become a social recluse. Dont go out or nothing anything apart from work. Its ruined my life but i want it all back.
Its worse in mornings and does clear abit and pressure eases. I dont take many meds either. Its just got to a very unpredictable stage for me now and i dont know what to do.
Is there tests to do for a perilymph fistula prob as i have seen heard wonder stories of such thing and the surgeon plugs the holes and it heals the person .perhaps im barking up the wrong tree there.
I saw a chiropractor who said my upper neck was way out so i had a adjustment and it actually sorted me out and then it went down hill after a few more adjustments so i stopped going.
So, never see a chiropractor again, do not subject your ear to large fluctuations in ICP or you risk bursting your inner ear again (if that’s what happened) or getting vertigo from the pressure.
Yes, mornings are worse. I highly recommend Amitriptyline, it’s fantastic.
No, you don’t want PLF surgery as can permanently reduce your hearing. I believe the continuous symptoms are a sign you are far along the path of healing so you don’t need it.
I would suggest you take Amitriptyline over an injection.
But don’t take my word for it, I’m not qualified, but I have studied this a lot and I suggest get another opinion.
If you look at Hain’s PLF plan he recommends conservative MAV therapy. This makes sense because I refuse to believe the body is so incapable of sorting itself out in most cases if left alone to do so. This has actually worked out for me so far. I don’t even experience relapses anymore.
I trust you have already given up caffeine, MSG etc.?
PS my doctor says secondary hydrops burns out but can take years and its hard to predict how long because there are so many variables, but for most it happens within 6 years of continuous symptoms in his experience. I was much more fortunate.
Well i know what your saying but ive lost totally the last year of my life.
I only take 200mg of pregabalin lyrica now . I was on more but dr wants me to come off it now. Its mad as one neuro told me having a oral direutic wont make any difference to the symptoms!! Yet so many are told to take it. He even said to me that curbing all the food habits etc wont really matter either so do they know something we dont lol.
But i have really watched my foods and quit alot of crap. Quit smoking too. I think i just need some sort of relief. Drs dont seem bothered about getting to the root cause of it all which is upsetting.
I want a ct scan of my right temporal bone. Thats mad that it all started for you from a shower thing etc. Glad its sorting itself now though.
so then why is it taking so long for me for my ear to sort it self out when it used to only take about a week??
Yeah my tin and fullness and pulsating tin is lesser now and in evening its quietens down. But it starts again in the morning ha. God help me!
If i put pressure on my ear lobe for about a minute and release it then goes all nice and cold and cool feeing in my ear and feels good like its clearing. Whats my poxy ear up to ?!!
As long as your symptoms are evolving it probably means things are progressing. If you were stuck in ground hog day completely (and you can only judge over a looooong period) then I would be less optimistic.
Make sure you quit caffeine and never dehydrate. Eat little and often, don’t have too many sweet things.
Well i have a top london ent who will be doing it. I somewhat think they wouldnt be wanting to do it if they didnt think it will benefit. I also think its perhaps a medication and can throw out taking meds so just have that. Perhaps that why they dont readily give a injection as it costs nhs alot ? I could be wrong there lol.
Amitriptyline— what is this? No one has ever told me to take that. They only suggested taking a diuretic recently but then that was from se neurootologists that said it wouldnt make any difference in taking it or not.
So why are the symptoms worse in mornings?
Because you’ve been lying down and the ICP has caused a chemical imbalance in your ear or encouraged a small leak. The higher pressure causes increased blood/labyrinth permeability. This effectively poisons the ear (reversibly). When you stand up, ICP reduces, your ear balances out more and the chemical imbalance reduces. On top of that your brain works hard to decode the new response from your ear. By afternoon your brain has worked it out more.
Lying flat is your enemy, use 3 pillows to keep you head up at night and I bet you have less symptoms in the morning …
I followed the post PLF surgery advice (as if I had had the surgery). This was really helpful. Head up at night, no heavy lifting.
My doctor is also in London.
Some doctors are a bit trigger happy imho.
What is icp then?
Yeah this ent literally spent 5 mins taking to me before he said about having this injection.
Yeah i know what you saying and it is true. When i lean over etc i get louder pulsatile tinitus or if i get up from a sitting position it starts pulsing in my ear then it settles. Sometimes its a quick intense dizzy spell then it clears.