Sunday, February 28, 2010

Gentamicin Injection questions and answers

If there is one thing that seems to get more comments on my blog than anything it is questions about the gentamicin injections. I had the procedure done in the summer of 2008. I had 4 injections and severe balance issues for about 2 months afterward. A week ago when I saw my doctor he asked if I wanted another injection. I am not ready at this time for another one, but I can certainly say that the original shots were helpful.

The first question that a lot of people have about the gent injections is how they will feel after the procedure is done. I felt okay right after the shot were admininistered it took a few weeks, I think, before my balance went haywire. And remember that everyone reacts differently, but I have read about others who have had similar experiences.

Here is an email from Justin who was enquiring about how his balance would be after the injections.

Anonymous said...

well, my balance is awful as is, i doubt anything cud really make it worse.... can i ask how the first few days after the first injection were for you? were you laid up? was it different than what u experienced a few weeks later? (and i will discuss with the doc, but he hasnt had the injection after all, =)
thanks for your time david,

Another question is how is my hearing going to be affected. After a year and a half my hearing has gotten a little worse, especially my ability to comprehend what is being said to me. The way I feel is that my hearing in my bad ear is probably going to get worse anyway whether I had the injections or not. As for the tinnitus, that isn’t a big problem for me, but for others it is constant misery. I don’t think that the tinnitus I helped by the shots. If you have any information or experiences with gent injections and tinnitus let me know. Here is an email from someone who has had the tinnitus for 8 years and is currently going through the gent injections.

Bry writes...
I am currently going thru gent injections, and so far had 5, and will continue each week. I have really bad vertigo, so bad that I couldnt get out of bed for falling over, MD is a terrible disease, but I am starting to feel better, and not had any vertigo attacks for 3 weeks. Only thing is that I am currently disorientated as soon as I move, but this is normal as my balance is re-learning again.
For all those out there with questions, I have been 80% deaf in my left ear for 3 years, the gent injections have not changed this (yet) and am having hearing tests every week to make sure that it doesnt get worse.
Gent will never get rid of Tinnitus, I have had that for 8 years, and is 100% constant, it never goes, gets louder at times and is a pain, but to be honest, if you can get rid of the vertigo, the deafness and tinnutus dont matter, you will get used to it, as much as you think you wont, I guarantee you will. If you have bad vertigo the go with Gent, if you have vertigo which is just now and then, I would think twice, as yeah it could make it worse, but I only went with gent as my life was ruined and I couldnt do anything at all.
I am starting to get stronger and do a lot more things since about 3 weeks ago.
I had a saccus decompression op last year which was useless, was only out of hospital two weeks and the vertogo started again.
I have lived the last 3 years in a horrendous state, but now I feel I am on the mend.
Good luck to all of you out there suffering with this, believe me there is light at the end of the tunnel, and whatever you do, dont give up on hope.!

Another question is how painful are the injections, well for me they were very painful. Maybe it is just me, I don’t know but they hurt. But you have to do what you have to do to ease the discomfort of meniere’s.

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Wednesday, February 24, 2010

Meniere’s disease and eyes playing tricks

The past three months haven’t been too good for me. I have had problems at work and health issues pertaining to meniere’s and health issues not pertaining to meniere’s. But something happened the other day that really scared me. It isn’t uncommon for your eyes to play tricks on you when you have balance problems, but this episode was particularly frightening.

My wife and I went to see my eight year old son play basketball on Saturday afternoon. I felt pretty good but I took an Antivert just to be careful. This was his 7th game this season that I went to. I was a little reluctant to go at first because watching basketball requires turning your head from side to side continuously. But the first 6 games I didn’t have any dizziness issues or meniere’s attacks.

Since this was the last game of the year, I took my camcorder to film him playing. I kept up with the game as well as I could, filming him going up and down the court. Luckily the games aren’t that long, so I didn’t become dizzy.
After the game we walked back to the car. I got in first and looked over at my wife opening the door on the passenger side. At this point the car in the space on my wife’s side started to back out. Suddenly I had the sensation of drifting backward. I slammed on the brake and held on for dear life. Which was ridiculous, because I hadn’t even started the car and the car was in park so we weren’t drifting at all.

Finally when the car pulled away I got my senses back. What a very strange sensation. This all felt very real. Needless to say my wife drove us back home. I don’t know what brought this on, I suppose the basketball game, I just don’t know.

This is another wonderful example of what Meniere’s disease can do to you.
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Sunday, February 21, 2010

Meniere’s disease and heredity

Those who have studied the causes of Meniere’s disease seem to have it narrowed down to two things, either it is due to Hydrops or some type of virus. This may be true but what about considering another cause for meniere’s like heredity.

What made me think about the connection was a comment on a post that I received a few weeks ago.

Anonymous said...

My mother was diagnosed at 68 & she went through all the horrible vertigo vomiting etc. for about 5 years till she went totally deaf. Then it all stopped.( the above )

I at 50 have just been diagnosed. .Ugh

I can’t say for sure but I believe that there have been other comments that tell of more than one family member getting meniere’s. I did a little research and found that one in three patients have a relative with meniere’s that is according to Dr. Hain excellent website.

There was also a study about a Belgian family where meniere’s was found in close to half of the 60 family members who participated. Here is the link; it’s a little technical but still pretty interesting.

Even with all that said there still seems to be a lot of people that don’t think that meniere’s can be inherited. But it certainly sounds convincing to me.

If you have a family member with meniere’s or you think that it can be passed down through families let me know.

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Wednesday, February 17, 2010

My last appointment with my Meniere’s disease doctor

I had an appointment with my otolaryngologist today. The last time that I saw him was in August (I think). I had very low expectations going into the office visit and strangely enough I was still disappointed.

The reason for the visit was I needed a refill on one of my medications. When I called last month to get it refilled his office told me that I had to make an appointment before they would give me a prescription. I didn’t really mind because he always gave me 12 refills enough to last for an entire year. And anyway I wanted to talk about a few things with him, mainly that the past few months haven’t been too good. I have been eating the Antivert and Phenergan almost on a daily basis. As you know both these drugs are sedatives and makes you very tired. So I have been walking around like a zombie on most days.

I also wanted to talk about getting a prescription for Serc. I have read so many encouraging things about it that I thought that I would like to give it a try. I didn’t think it would hurt to try.

Well, my appointment was at 2:00, they gave me a hearing test first that lasted about 10 minutes. My hearing, as I expected, had gotten worse especially in my bad ear. Where I had really gotten bad was distinguishing words that I heard, that dropped by 20 %.

At that point I was told to go back out to the waiting room and the doctor would see me shortly. Of course that didn’t happen. I waited for over an hour and a half before I actually got to see the doctor. The first thing that I asked him was about the Serc. It dismissed it out of hand and said that it didn’t work and he saw no value in it. I then mentioned that it was used for Meniere’s disease in Europe but he still didn’t think it worked.

I then told him about my recent problems and he suggested another gent injections. I reminded him that I had a very difficult time after the last gent injections and I didn’t want to do that at this time.

All in the entire office visit lasted about 5 minutes and needless to say I was very disappointed. Now I believe it is time for me to look for another ENT!

It was a very frustrating day.

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Sunday, February 14, 2010

Meniere’s disease diet

When you are finally diagnosed with Meniere’s disease the first thing that the doctor will talk about is lowering your salt intake. At least that is what the doctor told me. The general idea, at least it used to be, was that meniere’s could be controlled by eating or not eating certain things, a Meniere’s disease diet.

I have written in the past about how salt is supposed to be bad for you if you have meniere’s. The inner ear has membranes that contain fluid (Hydrops) which help with the sensory cells. If you don’t have any problems with your inner ear the amount of salt and sugar that you intake will have no influence over how much fluid there is and the amount of fluid is important because too much can cause the problems that you see with meniere’s disease. For a more detailed explanation see Dr. Hain’s website.

Of course there is also controversy as to whether this is the actual cause of Meniere’s disease. Many believe that is caused by a virus as opposed to the excessive Hydrops. I tended to believe that until recently. The past month or so I have been getting that feeling that you get when an attack is about to come on. It has been happening more and more. Coincidently I have been eating out at fast food places more the past couple of months. Is there a connection I don’t know but if ever did any research on fast food you would see that it is very high in sodium. I have also been eating a lot of candy lately too. I don’t know why but my eating habits have been poor and my meniere’s seems to be getting worse.

I am going to make a conscious effort to watch my diet and see if that is going to help any. I hope because the meds that I am taking are really making me tired.

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Wednesday, February 10, 2010

Beginning of Meniere's at an older age

As you probably know Meniere’s disease can start at any age, although the ‘usual’ age range is between 30 and 50. Recently I received a comment on one of my posts from someone who was diagnosed at the age of 65. Now 7 years later the symptoms have really become severe.

Anonymous said...

I was diagnosed with meniere’s 7 years ago. It started with pictures moving from side to side. Then the vomiting started and lasted for several hours. It took months to get a diagnosis. The treatment was Valium and Zofran for nausea. I also had 5 steroid injections through my eardrum. Before this I had already loss 75% of my hearing in the right ear. The hearing did improve somewhat. I was mostly symptom free for several years. Now I have started with more severe episodes than before I have vomited an average of every 3 days since Dec. 20th. I am on a very strict salt free diet, low sugar, also try to stay stress free but how when you never know when an episode will start. I take Valium after I feel the dizziness start. I do have the feeling of eye movements. My Otolaryngolist has observed these movement. Does anyone have symptoms this severe? I'm 72 years old and had no symptoms until I was 65, very few headache. I've been told this usually starts earlier in life and get better with age.

I can really empathize with this person’s plight. I had the injections in my ear, although mine were gentamicin, and I know how painful this can be. And I know it must be very difficult to have an emergence of the attacks after so many good symptom free years.

As Anonymous writes in the comment meniere’s is supposed to get better as you age. But unfortunately that isn't always the case.

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Sunday, February 7, 2010

Meniere’s disease and Sleep

After a particularly brutal attack of Meniere’s disease I usually feel as though I could sleep for days. My body is so worn out and weak I just can’t do anything. But for some reason the sleep just doesn’t come that easy.

For the record I have always had problems sleeping due to sleep apnea but the meniere’s has made it even worse. Even on the days when I don’t have any attacks and I don’t feel like I am about to have an attack the chances of getting any sleep or rest are poor. I don’t think I can blame it all on sleep apnea either. There has to be something going on with the meniere’s that interrupts my rest.

One thing that I can point to is how I feel before I go to bed which is a little light headed. Often when I lay down I’ll stare at the ceiling and feel a little vertigo coming on. If I close my eyes it sometimes makes it worse, so I just lay there trying to stay relaxed till I fall asleep which could take quite a while. Of course when the morning comes I am exhausted, which for me at least can be a trigger for an attack.

The medications that I take for meniere’s are somewhat helpful because most of them are sedatives, like Antivert. But I have found that with Antivert I don’t get as tired as I used to when I started to take it.

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Wednesday, February 3, 2010

Meniere’s stories about initial doctor’s visits

There were lots of great comments on the post Amazing statistic about Meniere’s disease.

Anonymous said...

You are right! My first ENT did the same thing, told me I had to live with it. While my kids were waiting at school for over an hour because mum couldn't get out of bed or down the stairs to pick them up. The ENT was even surprised when I said I had some questions about gent-injections or diets or other medications (I had read about on the web). And of course she didn't answer any of the questions.

Then I asked her how many M-patients she had. The answer (after soms calculations) was: five.

Jeff said...

I think the spontaneous remissions also contribute to the lack of visibility. I've spoken to several people who have clearly had Meniere's or a very similar condition, but did not follow all the way through to diagnosis because it just went away.

Possibly also the lack of pain, swelling and so on also makes occasional sufferers think it's just something to do with stress, allergy, cold, stomach upset or whatever; if there was pain or swelling I think they'd see the doctor sooner rather than waiting for the episode to pass.

Nicki said...

i was told by the first ENT i saw when i was 25 years old that "i would grow out of it." what??? i was so mad. he offered me exactly nothing in the way of treatment.

and you are dead on when you talk about people not getting this disease because we look like we're okay most of the time. i've lost friendships due to that misconception.

i'm so grateful to have such a great doctor now who believes in me and my disease.

bigdaddythinks said...

I have to chime in here. The ENT I saw gave me the standard treatment of diuretics, low-sodium diet, no caffeine, learn to live with it. That part about "learning to live with it" chaps me still and it was a year ago. In 2010 I will be seeking a new provider, one who will work with me. And I'll work my way through providers until I find the right fit. Nicki, I'm sorry you've lost friendships over this. I have been grateful and humbled by the support of my friends and family. I even had a client offer to come get me if I have an attack away from home.

Katey said...

Informing friends n family is key! I am advocating the viral school on this disease. I believe that so far they r the only ones who offer supported answers about Meniere's. It will be 29 years this year that i have had MD. Boy, am i sick of it all. I am in Stage 3 now, so at least the vertigo is not as bad as the first ten years or so. Wishing dizzy-free days to us all! Katey

Anonymous said...

I was told by my GP that my Meniere's would burn out in five years, i had already been suffering 9 years!!!

Thanks everybody I appreciate your very helpful and informative comments.