Posted , 7 users are following.
I'm afraid of errors and hurting someone when the brain fog sets in. But I am the breadwinner of the family. And carry the medical insurance. Eating low salt takes so much time. I'm sorry for all who have this miserable disease
0 likes, 13 replies
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elaine31332 Womanofthewoods
Posted
I'm not a doctor but I'm nurse and I'm in charge of a unit I also have MD it's an awful condition to have 10/1/2017 I went to hospital and had operation steroid injection in to my ear very unpleasant experience and now I have ear infection which I have alot of pain,at the moment my MD as not popped it's head up so I'm hoping this injection has worked.but I'm sure you have already looked in to this.
Good luck.
Womanofthewoods elaine31332
Posted
JMJ Womanofthewoods
Posted
Hi and welcome to the forum,
I'm wondering if there might be a misunderstanding: There are 2 different types of inner ear injections given for MD. 1) Steroids (like Dexamethasone) and 2) Gentamycin. These are two entirely different approaches to the same problem. Gentamycin is an antibiotic for which hearing loss is a certain side effect. Waiting until your hearing had deteriorated further, would only be recommended if a Gentamycin injection was the plan.
Steroids do not cause hearing loss, but rather work to decrease the inflammation in the inner ear, hopefully reducing the fluid overload (hydrops), and symptoms of vertigo. It cannot reverse hearing loss, but it can prevent further hearing loss by preventing further instances of hydrops. So steroids are an effort to reduce vertigo and preserve hearing loss. Gentamycin has a good track record in eliminating vertigo for extended periods of times, but always with hearing loss, and a fairly intense 2 to 4 week adjustment period of increased vertigo and imbalance. The way my doctor works is to administer steroids whenever possible. Only for cases unresponsive to steroids, would he offer Gentamycin. You've got to be ready to sacrifice your hearing .
In July 2015 I was diagnosed with MD and failed all conservative treatments. I was completely incapacitated. Steroid injections have been the only thing that helped. For some of us, they take a while to kick in, but when they do? It feels like a miracle. My miracle was interrupted by the flu, sinusitis an pneumonia, which triggered another severe episode of MD. After my 3rd injection, I'm finally feeling clarity again: Brain fog is gone, vertigo is gone, and I've only felt a couple of episodes of imbalance and "rocking"....But I know it's on it's way out again. I would always recommend steroids first.
I still have to take diuretics and maintain a low salt diet. I also carry rescue meds at all time, should I have a breakthrough.
The only risk with an inner ear injection with steroids is local: Like any other surgical procedure, experience and technique is important. Infection and rupture of the ear drum are always a risk, but they are not common, and they will heal. You have to be on water precautions for a week after an injection, and take care that you don't expose your ear to anything that might promote infection.
For me, the decision was and easy one. Inner ear injections aren't exactly pleasant (and mostly, it's the idea of it!) , but compared to vertigo? A day at the beach! They numb you up quite well. I've had many injections, and no side effects. Once my fluctuating hearing loss and tinnitus calm down, I hope to get a hearing aid. If you end up with a "dead ear" (complete hearing loss), a hearing aid isn't an option. You need at least a small range of frequency available to use with a hearing aid. It needs to have at least a small "window of hearing" if you will, to work with.
Anyway....I hope this helps a little. It's really a worth while option for someone who is simply not being helped by conservative measures.
Sincerely,
J-
JMJ elaine31332
Posted
Dear Elaine,
It IS a terrible disease. I used to be a nurse, and I have no idea how I would have ever functioned with MD. I'm so sorry that you found the steroid injection to be unpleasant, and experienced an infection!! I've had so many injections now, and not a single one has resulted in infection. Were you on strict water precautions for a week post-injection?
From what I understand, it happens, but it is unusual for a single injection to do the trick. It typically takes two or three in order to begin to feel a significant difference in frequency and intensity of attacks.
I hope you heal up quickly, and that you find the quickest path to relief, with the least side effects.
Sincerely,
J-
Womanofthewoods JMJ
Posted
elaine31332 JMJ
Posted
It got to a Point that I was thinking about taken early retirement to be honest specially because I'm a palliative care nurse stress was the main factor that would set my MD off and I would have alot of drop attacks.it's been two weeks now since having my injection still feeling little full at times but not had attack so let's see how it goes,I'm on antibiotics now .
Thank you so much for your response hopefully I will be on the road to recovery
JMJ elaine31332
Posted
My gut feeling is to tell you not to give up on the steroid injections. Some of us, especially those who have gone too long without effective treatment, have inner ears that are so inflamed, it takes a long time for the ear to calm down. The important thing is that the treatment cannot harm the inner ear; you can have as many injections as you need. If you're having any response at this point (i.e. The duration and frequency of attacks are lessening) , that's an excellent sign. If you can be patient and wait it out, I'm guessing that you will eventually feel the "shift" that I felt, when one day you realize that your head feels completely clear! No fog, no dizziness, no vertigo, no vague nausea, no fatique....just clarity. And the wait will be worth it. I wish I could tell you that the hearing loss and tinnitus went away - apparently with some it does. But with me, it didn't. Still, to feel free of all those other symptoms, it was a miracle.
I can completely understand your contemplating early retirement in the midst of having MD attacks. Had I been working when this started, I probably would have done the same. Well...I would definitely have had to take a fairly long leave of absence, since it wouldn't have been safe for me or for my patients. The attacks were so frequent and severe, and without warning, I coulnd't be out and about for many months. And I honestly thought I was "losing it", as I seemed unable to concentrate or remember things....It was a general feeling of being very "out of it". Everyday there was some new sensory distortion that always created nausea and loss of balance. I give you a lot of credit for hanging in there. Just make sure you stay safe.
Take good care. I wish you only the best!
J-
louise98846 JMJ
Posted
I am looking forward to meeting with my Dr. for the second time in April. He is one of the best and I waited over a year to see him. I have had many years of Menieres but not diagnosed till recently. Am having all the testing done prior, and he did tell me that there is a lot he can do for me. Your last post describes what I am going through. I am an R.N. and am on the verge of filing for long term disability. But I want to return to work, but cannot function like this! I am hoping that after some sort of treatment, which could be steroid injections, I will be able to return to work. Am at the crossroads, so to speak. Have to be patient, but it is difficult. I like my job but don't want to just give it all up, if there's a chance I can feel well again! Thanks!
donna16710 Womanofthewoods
Posted
I was an RN working in the staffing office when I was diagnosed. As things worked out, I ended up taking an early retirement and ended up on disability. The ENT put me on dyazide and as such, I do not have to be so crazy at watching my salt and coffee intake although I still don't eat salty foods like chips and such as I do feel the effect of that. After about a year I started feeling better and thanks to rehab, I have stoped falling. Taking EPA and DHA (omega 3 fatty acids) seemed to help clear the brain fog. I still have days that are not so good, but comparatively speaking, and am much improved. I don't think I will ever not stop taking the fatty acids just because I hated the brain fog worse than anything else. I can't tell you 100% that it was the fatty acids that helped. I did not start taking them for that reason but noticed a difference in my brain fog shortly after I started (a month, more or less). I hope the best for you in the future.
louise98846 Womanofthewoods
Posted
Google. "Ed's Menieres videos". He's a physician with Ménière's and has a series of videos on YouTube.
txgal Womanofthewoods
Posted
I thought going low-salt was going to be very difficult, but I'm finding ways around it, but it takes concerted effort. I also work in a job where I need to do a lot of client dinners/events/ etc. so as much as I try and cook for myself now, I find that I'm not always able to do so.
My gameplan:
- I have switched my kitchen to as much of a low-salt kitchen as I can. So low-salt bread, peanut butter, spaghetti sauce, etc. Anything and everything that I have in the house is as low salt as I can find. And I don't have anything canned or frozen for the most part.
Breakfast- if at home, I eat one of several cereals or yogurts that I have at home that are low-salt. If eating out, I stick w/ oatmeal if I can. If not, I'll do eggs and tell the waiter there can't be any salt or any canned vegetables added to an omelet.
Lunch - I eat salads everyday with my own dressing (it's a yogurt-based dressing that has very low calories and sodium made by Bolthouse Farms). Only fresh vegetables, and no high-sodium foods like olives, canned vegetables, etc.
Dinner - if at home, I'll cook an omelet or some tofu or vegetables or pasta. If eating out, I try and stick w/ fish and ask them to not add any marinade or sauces or salt. If I'm meeting friends for drinks, I'll order sparkling water or cranberry juice. I've also found if I'm in a bind (at an airport for example), I can tell a restaurant to make me a pizza for example with very little cheese and very little sauce. This way there's still some flavor and I'm not hungry.
I work too busy a job and have too much to do to risk getting attacks (especially since I travel a lot). So even though the diet is not great, I'd rather stick with that than lose the ability to live my life normally. Best of luck.
Womanofthewoods
Posted
Thank you all for your words if encouragement! It helps to talk to people who understand. To most people I don't look sick. I don't want to whine but you all know how hard this all is. I wish all of you a fast cure!!!!
Bluesmann Womanofthewoods
Posted