The bouncy vision you have described is called oscillopsia. It’s not vertigo. And as you said the moment you stop moving, the symptoms stop.It’s going to get better with time however you must walk, look around (that will make you very uncomfortable) find a physio therapist to guide you.
Currently enduring what I hope is ongoing compensation. I have had one ‘vertigo attack’ since the third and final injection that passed very quickly and was different to all attacks I have had previously which seems to match up to others experiences. anxiety has been through the roof but stumbled across this in a study which I am trying to frame in my mind: There are at least 3 reasons why this concern (bilateral following treatment) is not relevant to treatment decision-making in cases of unilateral Meniere's disease: (i) regardless of whether the first ear receives ITG, the balance organs of that ear will continue to degenerate so activation of disease in the second ear will lead to bilateral vestibular hypofunction whether or not the first ear is treated; (ii) there is no evidence to suggest that ITG treatment has any effect on the fate of the second ear—it neither increases nor decreases risk of future bilateral Meniere's disease; and (iii) it is the present vertigo attacks that are disabling and must be treated—one can neither predict possible future involvement of the second nor predict what future treatments may be available at that time. Thus, the patient is best served by offering treatment for control of the problem at hand.
Reading this definitely helped me to come to a decision on whether or not to have a Gentamicin injection. Many thanks Marc for the detailed account of your experience. For anyone thinking of having it done, I've just had my first injection nine days ago and so far have had no problems at all with imbalance etc. Thankfully, my experience has been very positive. One question I'd like to ask is how long was it before you could eat a normal diet again? The ENT told me I'd never be able to eat a normal diet again but I've been thinking, if Gentamicin stops the vertigo attacks in general then surely it should help stop attacks that are caused by diet too. If you have the time (or if anyone else has had Gentamicin injections and is able to eat "normally" again), please let me know your experience with going back to a normal diet (how long after Gentamicin, what you were / were not able to eat etc.). Many thanks, Mike.
Hi, Just a quick note to say that many years later, I am still doing well. No vertigo. I've lost all of the hearing in my bad ear because I assume Meniere's continues it's journey. I do get fluctuating fullness which I attribute to the disease. marc
Hi marc, Thanks for the update. Quick question: are you still able to eat a normal diet? How long was it after the injection(s) that you were able to eat more salt etc.? I recently had a gentamicin injection but am worried about testing out higher salt foods that may lead to a bad vertigo attack.. Many thanks, Mike.
I have always been able to eat normal diet. Salt never made any difference to my attacks. A few years ago I excluded salt from my diet as much as it was possible. I even baked my own bread without added salt! Nevertheless I still had a few attacks a week. So I started eating as before. Everyone is different though. All the best
I wish I could do that, if I have over 0.8g of salt a day I'm on the floor vomiting. Salt is a massive trigger for me and always results in awful vertigo.
marc: you may be tired of hearing this but again your post gives me some hope. Im being a little selfish asking you for a response here but ....i'm just looking for my next step. I lost my hearing (bilateral ) Meniere's five years back. I had my first cochlear (R) and wear a hearing aid on the left. I still have a tiny bit of hearing in my left and like that i can use the hearing aid ( I wont explain). Life is tolerable except for the fear of vertigo attacks. Its scary because I know Ill be in bed for a day vomiting and a day to recover. This week it happened twice ...normally the attacks are every 2-3 weeks. My doctor that did the cochlear surgery here at the Univ of Utah is really good but not so good at giving options on the vertigo. With what i just wrote, do you think i the Gent... course of action would be helpful? Thanks ...Bryan
My Menier's symptoms ( tinnitus, ear fullness, hearing loss) pretty much burnt through both ears over a five year period. The Cochlear helped my right side because what little hearing I had left was garbled. The cochlear is great but the Vertigo attacks my be slightly higher than before the cochlear surgery. The vertigo takes me down for two days every few weeks . Im sick to it . Now, Im not sure which side initiates the vertigo attack if that makes sense
Update: since completing my 3 injections of gentamicin in January 2023 I had a 8 month streak of relative normality however never quite right. The last 6 weeks however ‘attacks’ have returned however they are different - I don’t have vertigo as such during them unless I (using only my eyes) look to my left or right or turn my head. It’s like The vertigo is muted. my initial conversation with my consultant said ‘give it time and it will settle back down’ however being back in the attacks every 3-4 days albeit a cake walk relative to this time last year is disappointing. I also find it interesting that attacks have returned almost to the day one year later - could be seasonal but also coincided with very stressful life events both times too. can anyone offer any advice or thoughts?
I join with those thanking you for this thread. It's helping me to be more secure in my decision to have the Gentamicin injection scheduled for next Tuesday. I've suffered to varying degrees since 1998. It was quite a while and a few ENT's before it was diagnosed as MD. In the beginning it was terrible. Over time I found that I suffered once in the spring(April) and once in the fall(November). Each episode lasted between 10 days and two weeks. It seemed to burn itself out over the years with the symptoms lessening. That is until 2021 when it roared back to 1990's levels. The extreme vertigo, vomiting..... Just prior to it getting worse than it had been in years I got a Covid vaccine. I've read in a number of places that some Meniere's sufferers have experienced the same thing. I was wondering if anyone commenting here had made that correlation and if they did, did this have any effect on the use of Gentamicin. Thank you in advance for anything you can share. The thought of getting the injection next week has been causing me considerable anxiety and I want to be completely sure before going ahead with it.
