Dexamethasone vs Gentamicin injections for MD
Posted , 6 users are following.
I have had Meniere's Disease for about 5 years now and the episodes have started again in early April, nearly daily. I take the meclizine to counter the attack and my ENT put me on Diamox (acetazolamide) daily. At first the Diamox seemed to help, but now 4 weeks later it does not seem to work as well. I few episodes a few times a week. I've been on a low sodium diet for this entire 6 weeks or so but I guess it helps, I'm not totally sure yet. I never go anywhere with out my chewable meclizine tabs as these seem to work after about 30-60 minutes.
I'm really getting frustrated with not being able to do "normal" things without the anxiety of an episode happening that puts me down for hours.
I've got 70% hearing loss in my right ear now and would like to consider the steriod or gentamicin injections. I read that ENT's are hesitant to give the steroids as it is only a temporary "fix" and that many seem to recommend the gentamicin instead.
I'm not that concerned about further hearing loss in my ear as at 70% I can't hear anything from that ear anyway with 70% loss.
Can anyone recommend an ENT Meniere's specialist in the Tampa Bay area? The ENT I'm seeing seems to take my situation as I'm doing something wrong by not eating right etc. But I read quite a few people seem to be basically totally symptom free after steroid or gentamicin injections......I would like to see an ENT that has experience with both and perhaps try the steroid first as it seems not quite as permanent as the gentamicin....can someone please shed some legitimate information about the two treatments and hopefully suggest an ENT in Pinellas or Hillsborough county?
0 likes, 24 replies
lana56327 BrianBelleair
Posted
Hi,
I had episodes of vertigo come back after 7 years of being vertigo free, and my ENT gave me a series of 4 steroid shots. It stopped the attacks, and that was about a year and a half ago. He told me if they came back, he'd do it again. The steroid shots don't destroy anything so are more benign than the gentamicin. My ENT supports the use of steroids, but isn't a fan of gentamicin unless all else fails. If your Dr is blaming you for your symptoms, I definitely think you should see another ENT. Have you been put on a diuretic (triamterine htc)? That helped me a lot, along with the low sodium diet. Sorry, but I live up North so can't give you any referrals. But go online and search and then call the various offices and ask about their experience with Meniere's and steroid injection treatment. Good luck. I'm a proponent of the steroid shots since they helped me.
BrianBelleair lana56327
Posted
Yes, I'm been put on Diamox (acetazolamide) this seemed to help for the first week or two but late in the afternoons/early evenings I would start to get episodes again. I've called my doctor and informed him more drastic measures need to happen as I cannot continue to function this way in my life......always having anxiety and not living life for fear of having an attack.
I have an appointment tomorrow to see what his recommended next steps may be, either steroid or gentamicin....we'll see. If I don't get statisfaction with his recommendation then i'll be off to another ENT, even though this group of ENT's seem to be rated as some of the best in the area, per what I read....Thanks for your response.
tanney BrianBelleair
Posted
Hi Brian. So sorry to hear about your difficult bouts with MD. I have bilateral MD. I've had in right ear for about 8 months but in the left ear for over 35 years. I had gentamicin injection into left ear 35 years ago when it was relatively a new proceedure. It totally eliminated the vertigo and only slightly impacted my hearing...I now have about 40% hearing in left ear. This proceedure can also affect your vestibular function and may cause balance problems, but the good ear will compensate for loss. The proceedure did NOT eliminate tinnitus or occassional ear fullness....but, as stated above, the vertigo was completely eliminated.
In December I had the intratympanic steriod injection into my RIGHT ear....the one diagnosed with MD about 8 months ago. At about the same time I started betahistine. So far I have had only two vertigo attacks from right ear MD. My ENT recently increased the dosage of betahistine and stopped the steriod injection.
All in all, I am glad that I had the gentamicin injection 35 years ago. Since your hearing is only at 30% now and your good ear apparently is fine, and you are having dibilitating vertigo, it seems that the gentamicin proceedure may be good for you. I had the proceedures done in Pittsburgh but I have to believe there is an ENT in Florida that does this. Check with your university...maybe they can lead you to the right person. We wish you the very best. Keep us informed about your progress.
BrianBelleair tanney
Posted
I guess I'm open to the gentamicin treatment as what I understand it is less costly (only a 1 time treatment vs. possible multiple injections for the steroids) and should be a permanent treatment.
Must I stay on such a strict diet after the gentamicin or may I return to a somewhat normal, albeit, higher sodium intake? It is quite difficult to adhere to such a strict regiment of low sodium.
The tinnitus I can live with as I've adjusted to that over the past 5 years or so, but the veritgo is so debilitating, no one can adjust to that.
Perhaps with me having this for so long now and more severe attacks lately perhaps the gentamicin is the way to go.....anyway I'll have to hear the doctors view/suggestions on next steps tomorrow.
Thanks for your story and information.
tanney BrianBelleair
Posted
Hi Brian....it is wise advice to stay on low sodium diet (1000 mg or less dailey) even with the gentamicin proceedure so as to control ear fullness and tinnitus level. A low sodium diet combined with a diuretic will be very helpful. If cost is a major factor then maybe the gentamicin proceedure makes sense as your next step, but It's usually not done until other less invasive proceedures are tried and found ineffective. Your ENT is best person to guide you here. The steps many ENT take once MD is diagnosed are the following (per my limited experience)
1. diet adjustments (low sodium, low sugar, NO alcohol)
2. diuretic (water pill) to pull fluid out of inner ear, along with a sedative like Ativan (rescue med).
3. intratympanic steriod injections if above fail.
Good luck and stay in touch.
4. gentamicin injection
4.
BrianBelleair tanney
Posted
I visited the ENT yesterday and he basically says he will perform either injection, either the steroid or gentamicin, but he really kind of recommended the gentamicin as he indicated he felt that most of the steroid injections were temporary or did not work long term. He indicated the Meniere's would be worse over time and that the gentamicin seemed to be best long term with a relatively high rate of ending vertigo long term also. The concern is the amount of loss of balance was more the concern for me vs. the potential additional hearing loss (i'm not that concerned about that given my right ear already has 70% loss, and I can't really hear out of it anyway).
So based on this information I'm wondering how "balance problems" will really effect my daily life? I don't believe i've really ever had balance problems per se, so i'm a bit in the dark about the matter. Of course i'm quite familiar with vertigo and the problems releated....near falling down, not able to move until it passes, feeling generally foggy for hours after an episode.
Anyone out there have experience with balance problems and information about this? Does it last just a second or so? Can I walk if it would happen, can I still go out on the boat and be OK? Do the balance problems subside after my brain figures it out?
For this reason I may consider the steroid injection to see if after the suggested 2-3 injections I'm episode free, and for how long will the steroid last, I've read on some meniere's forums including here that after a single treatment the vertigo is gone for years...?
tanney BrianBelleair
Posted
hi Brian. In my case the loss of balance from affected ear after gentamicin injection did not impact me in any way that I'm aware of.....and recall that I had it done over 35 years ago when proceedure was relatively new. the good ear tends to compensate. But even if you do have subsequent balance issues there are remedies for that...rehab can be very helpful. I would think that you could resume regular life....I did. Steriod injections are a better first step. I'm not sure that was part of the protocol 35 years ago when I had proceedure. I hope this helps.
good luck!!
BrianBelleair tanney
Posted
Thanks for your information, I'm leaning towards the steroid, as is my wife.
If it doesn't last long or is not effective, then I can always do the gentamicin later.....we both feel "less evasive" is the way to go at this point, even though the doctor seem sceptical about it, but as mentioned he'll do what ever we decide....thanks again.
tanney BrianBelleair
Posted
Two other thoughts have just occurred to me....
1. ask your ENT about Betahistine. It has been found effective for some folks with MD as indicated in various threads on this forum.
2. do you have allergies? Allergies are a common cause of MD symptoms. If you do have allergies and they are managed with an antihistamine, and if you start Betahistine, you will need to use only antihistamines that can be sprayed into your nose....NO antihistamines that are taken orally which can neutralize beneftis of Betahistine.
Best of luck to you, and let us know how you are progressing. We care, Brian!
lana56327 tanney
Posted
I'm not sure Betahistine is approved in the US. No ENTs seem to use it here. But we could always ask our Drs about it. It does seem to help people in the UK!
tanney lana56327
Posted
Lana, betahistine is available in US....must have a precription and it can be filled at any compounding pharmacy. Cost is a little high and many insurances do not cover. It can be compounded in capsule form or liquid. Liquid is less expensive. 3 month supply of 8mg/3 times day cost me from $90 to $145 for capsule depending on who did the compounding and what their profit margins are. Liquid is about $15 cheaper.
lana56327 tanney
Posted
tanney lana56327
Posted
BrianBelleair
Posted
I am now leaning towards the Gentamicin as the ENT says he will first test my hearing in my bad ear (right, has been tested several times over the past 5 years and maintains 70% loss, basically can't hear hardly anything but static) and then perform 1 injection, then 1 week later monitor how i'm doing and perform another hearing test to see if any hear has changed. If I'm still having episodes with no hearing loss then another injection may be done again montioring my hearing in the MD ear. The ENT feels in his experience and can back up with his access to studys, that the gentamicin is effective in most cases as compared to the steroid.
Based on this now I'd like to go this way, as 1 time and done.....I'm having some success on the Triamterene and Hydrodhlorothiazide as the Diamox didn't seem to work quite as well for me (both diuretics). But I don't want to be on these the rest of my life i'm 58. Seems after several more days of thought the injections of Gentamicin don't necesarily cause additional hearing loss and with the high percentage of success with this procedure given my 70% hearing loss already, seems to be the best/hopefully permanent long term "fix".
I do take meclizine for severe attacks as required and hate taking it, but it works for me....and again I don't want to live the rest of my life relying on the Tri-HCTZ and meclizine when the gentamicin could fix this long term...Thanks for your comments and experiences.
I believe I'll have the injection later this week based on the ENT's schedule.
tanney BrianBelleair
Posted