my life and meniere's disease

Does Meniere’s disease lead to other health problems?

2012-01-22T05:17:00.000-08:00

Have you ever thought that having Meniere’s disease has been the cause of you having other health problems? The first thing that comes to mind is hearing loss. While my hearing wasn’t that good before I was diagnosed with Meniere’s it is really bad now especially in my “Meniere’s” ear. Although I think that I lost a lot of the hearing after my last gent injection (I can’t say for sure) As for other health issues it seems that MD has also made them worse.

What made me think about all this was a comment that I read about acid reflux, which I have had for years. It doesn’t seem like there would be any connection between it and Meniere’s but who knows there might be.

Another problem that I know quite a few people have difficulty with is depression and with meniere’s it isn’t hard to see the connection between the two. Dealing with the thought that you may have an attack at any moment during the day is enough to make anyone depressed. In my own case I found that going to a counselor helped quite a bit in handling the stress and depression that it puts you under.

Something that I am going to try to do in 2012 is to live a healthier lifestyle. Hopefully by eating a healthy diet and exercising I will be able to feel better and have more energy. (I hope that I stick to it!)

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No spinning and Meniere’s disease

2012-01-15T05:00:00.000-08:00

I didn’t think that I was going to be able to write my blog post this Sunday because of my computer problems. On Thursday I tried to turn on the computer and I couldn’t get windows to come up. After trying everything in the book I decided to reinstall windows which of course wiped out some of my stuff (not all of it because I did have a backup, thankfully) the reinstall worked but put me a little behind schedule.

I received an email this week from someone who described having a type of motion sickness for many months but not the kind that has spinning…

Here's the comment
Does anyone have chronic, non-stop, all day motion sickness? Not spinning vertigo but that heavy head, unstable feeling? Does this sound like Meniere's? I've had it since October in addition to tinnitus and high pitch hearing loss in one ear. Am so miserable and sad. Any thoughts

It does sound terrible especially to have it as long as he has. The best suggestion that I have for him is to go to an ENT who specializes in the inner ear to find out what his options are. This reminds me of a guy I worked with a few years ago. He also had a similar problem with his balance and hearing loss. I’m not positive but I believe he had surgery to help with the problem. I think it was the laby surgery but I’m not quite sure.

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Labyrinthectomy, Vestibular Neuritis and Meniere’s disease

2012-01-08T05:00:00.000-08:00

I receive a lot of comments from folks about whether they in fact have Meniere’s disease or not. Their doctor may have diagnosed them with it but then again they still aren’t sure. And that makes sense because meniere’s is a strange disorder that is hard to make sense of. I received a comment the other day regarding meniere’s and Vestibular Neuritis.

Anonymous’ wife after years of living with Meniere’s disease had the laby surgery. It went well and with therapy and exercise she had a good recovery. After a year of no meniere’s she started to have attacks again.

Here is the rest of the comment…

“We know it is not positional vertigo and it's not Meniere's in her good ear, but we are stumped trying to figure out what is going on. The doctor first thought perhaps she had Vestibular Neuritis, but that should have resolved by now. Now his is thinking she may be among the <1% of people that develop a vestibular neuroma on the nerve stump following labyrinthectomy, but that is very rare and there is no way to test for it. I know we will get her through this and will be back to feeling great again someday, but it's been hard for her to deal with after knowing what it's like to feel good again. Does anyone out there know of someone with a similar experience?”

I would have hated to go through that type of surgery and then a year later start to have the attacks again. But you never know with meniere’s. It is also kind of scary that she might have developed a vestibular neuroma after having the laby surgery and not be able to find out for sure.

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Meniere’s disease New Year resolution

2012-01-01T05:00:00.000-08:00

Happy New Year’s from my life and meniere’s disease! Let’s all hope that 2012 is much better than 2011 not only from a meniere’s perspective but in all things In your life. It was a rocky year for me with plenty of ups and downs but I made it and I’m glad that you did to. Now let’s think positive about what is coming up in the New Year.

I usually don’t make New Year’s resolutions but I think I will make a few this year. The first one is to start eating right and hopefully see some of my excess weight come off. Over the years I have lost weight but I haven’t been able to keep it off for a long period of time. This year I will definitely try harder to watch what I eat and avoid the foods that aren’t good for me (unfortunately the foods that aren’t good for me are the ones that I love, like cake, ice cream, junk food, red meat…)

I am going to also try to begin exercising by walking a few times a week. I’m a little scared about this one because the park that I used to walk in isn’t as safe as it once was and I am also fearful about having a meniere’s attack or possibly a fall. But I need to try because walking is a great way to strengthen the heart and also help with my balance.

I also hope that I have a resolution on my social security disability claim in 2012 but there isn’t much I can do about that one.

Anybody else have any resolutions for 2012?

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Merry Christmas from my life and Meniere’s disease

2011-12-25T05:00:00.000-08:00

I thought that since today is Christmas I would just write a short note wishing everyone a merry, non-dizzy holiday! I know that meniere’s can be a real burden during the holidays due to the stress of the season and possibly eating the wrong food (too much salt, too much caffeine, too much alcohol) but try to enjoy the company of friends and relatives during this festive season.

Merry Christmas from my family to yours!

David

Bad week with Meniere’s disease

2011-12-18T05:00:00.000-08:00

Last week on Monday I was starting to prepare dinner when my head started to feel light and the familiar spinning of a meniere’s attack started. It was strange because it wasn’t spinning as quickly as it usually does when I have an attack and in few minutes it stopped. It really didn’t have much impact on me or the rest of the day. Unfortunately what happened on Wednesday wasn’t quite as simple as the previous episode. It was in the evening and I was sitting on the couch not really doing anything when an attack came out of the blue. It felt like something had slammed into the side of my head causing my vision to become blurred and my sense of control to become lost. I rolled onto the floor and yelled for my wife who knew what was happening.

The whole attack lasted only a few minutes but it was brutal, one of the worst sudden attacks that I have ever experienced. Why did it happen now? I’m not sure but I can certainly speculate about what could have brought it on. Over the past few months I’ve had problems with in congestion, ear aches and headaches. I have taken a lot of over the counter stuff and I can only wonder if that played a part in the attack.

Of course other reasons may be the stress of the holiday season and the ongoing tension of getting on social security disability (I haven’t heard anything in while). As usual it is a guessing game as to what causes Meniere’s disease to flare up.

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Sense of smell and Meniere’s disease

2011-12-11T05:00:00.000-08:00

I have had Meniere’s disease for about 8 years and there are still so much about it that I don’t understand. But then again, meniere’s is a disorder that doesn’t have a cure and there isn’t a clear cut reason why it comes about, so I’m not the only person who has a hard time with it. The thing that amazes me is all the different things that can set off an attack. Too much salt in the system is one of the biggest reasons, at least for some folks but for other it could their eyes playing tricks on them that trigger an attack. For me it seems that my attacks can come from anywhere but could they come from something that I smell.

I know that it seems like a stretch to think that a smell can give you an attack of meniere’s with full blown vertigo to boot, but it is something to consider. If you look at each of your senses such as hearing, seeing, tasting and feeling there are things there that can be connected to meniere’s. Seeing and hearing can certainly set off an attack and if feeling has to do with balance it may cause problems.

What made me thing about this was the other day I was cooking and I combined quite a spices together to cook a roast. While I was putting the spices together the strong smell of the spices was powerful and I got a good whiff of them. It probably wasn’t more than 10 minutes before I had to sit down, then lay down because the room was spinning.

I can’t say for sure whether a smell can cause you to start spinning but it certainly seemed to in my case.

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Roller skating and Meniere’s disease

2011-12-04T05:00:00.000-08:00

If you follow this blog on Meniere’s disease then you know that I am really blessed to have so many readers who comment and contribute so much to this ongoing battle with this disorder and without that contribution I wouldn’t have much of a blog. I received another interesting comment the other day from someone who is a professional roller skater in New Zealand who has been diagnosed with meniere’s disease.

Here is part of the comment from Lauri M.

“Originally I was diagnosed with just severe migraines, I was having attacks once or twice a day and lost my job because my boss thought I was faking sick.. it wasn’t till a year later that we finally got a correct diagnosis and I now take buccastem (5mg) as soon as I start to feel woozy - but mostly I get drop attacks.”

Being accused of faking an illness (meniere’s disease) is so, so common with this disorder as most of you already know. As for the buccastem I will have to look that up I’m not sure that I have heard of it before.

Lauri goes on to talk about how scary it is to skate and at the same time worry about having a dangerous fall, and that certainly would be a huge risk. It also sounds like she has had to deal with tinnitus and hearing loss.

It is always sad to see someone so young who has to deal with meniere’s disease especially when it interferes with activity that they has spent so much time and effort in.

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Thanksgiving, rest and Meniere’s disease

2011-11-27T05:00:00.000-08:00

As I have written in the past rest or lack of it can certainly bring on a meniere’s attack. Not in every case but lack of rest also translates into stress which really ups the chances of spinning and throwing up. The holidays should be a great time to relax and not to worry about other things that are going on unfortunately that isn’t always the case. For some reason thanksgiving and Christmas seem to be stressful when it really shouldn’t be.

One thing that I am careful about especially at thanksgiving is going into crowded stores. While the deals are great, the packed stores and the long aisles at times plays tricks on me causing me to be a little light headed and possible heading for an attack. Luckily my wife does the Christmas shopping for our son so I don’t venture out on the dreaded Black Friday.

I hope everyone had a good thanksgiving and they didn’t overdo it on the salt. We just had turkey and few side items like mashed potatoes and cornbread. And probably the best part was that we stayed at home which meant no long drives for me (one less thing to trigger an attack!).

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My latest bout with tinnitus

2011-11-20T05:00:00.000-08:00

Tinnitus is often a subject of comments on my Meniere’s disease blog and that makes sense because tinnitus and Meniere’s disease often occur together. Some folks have the ringing sound in their ears all the time while others may have it once and a while. In my own situation I occasionally had the type of tinnitus that was either ringing or more of a static sound. Unfortunately this past week I have experienced a different and more annoying type of noise in my ear.

From what I can remember it started about a week ago when I heard what sounded like music coming from outside. It wasn’t anything I could identify it was more like booming noise like the bass was too high. I walked outside and I could still hear it but it wasn’t coming from any of my neighbors’ houses. I then asked my wife and son if they were hearing the same thing that I was. They both told me that they didn’t hear anything and then it dawned on me that this was some type of tinnitus.

Why now?

One possible reason could be that I have been dealing with some congestion and stuffiness in my nose. And this usually has some effect on my ears where I begin to have a bit of an ear ache. But I get this type of congestion a lot and it has never affected me with this type of tinnitus.

I have also been taking a lot of ibuprofen lately for headaches but once again that is something that I have been doing for a while.

It was interesting this week as I was trying to figure out what was going on someone wrote a comment about a type of tinnitus call pulsatile where the sound matches up with your heartbeat. That is interesting because I hadn’t heard about that before and I started to wonder if that is what I have now. I’m not sure but I will continue to research on it.

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A musician with Meniere’s disease

2011-11-13T05:00:00.000-08:00

Meniere’s doesn’t get a lot of publicity probably because of the rarity of the disease and the fact that there isn’t any cure for it. Another reason might be that there aren’t many celebrities that have it. You wouldn’t think that would matter much but it does. There are some celebrities that are dealing with it, the singer and actress Kristin Chenoweth has talked about her bouts with meniere’s on talk shows and that is certainly good. I also know of the singer Ryan Adams that has Meniere’s disease.

Ryan Adams had quite a time with it a few years ago, in an interview with quietus magazine he spoke about how he almost gave up his music because of it. This spurred him on to change things in his life

“I dealt with it in a lot of extreme ways. You change your diet, you exercise, take supplements, acupuncture, acupressure, hypnotherapy, you do what you can”

I am glad to see that changes in his life have helped him to deal with this disorder. I hope that things continue to be that way although we all know that meniere’s has a way of resurfacing just when you think that you are over it.

I’m glad that he is talking about Meniere’s disease hopefully that will help get the word out about this horrible disorder.

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Ambien and Meniere’s disease

2011-11-06T05:00:00.000-08:00

I had a checkup with a new ENT the other day. Actually I had seen him before about 3 years ago so I was considered a new patient. One of things that we talked about was my problems with getting enough rest. As I have mentioned before I also have sleep apnea which makes getting any rest nearly impossible. Another doctor had written a prescription of Ambien for me and I had been taking it for a couple of months. I told the ENT that I didn’t think that it was helping that much. He didn’t think that it would in fact he thought that it would make my sleep apnea even worse. It also seems to have made my meniere’s worse also.

I stopped taking the Ambien after I saw the ENT. That night I couldn’t get to sleep till about 3 in the morning. When I got up I felt that familiar feeling of an eminent attack. Luckily it didn’t happen although I have felt lightheaded since I stopped taking the sleeping pills. Hopefully this will go away in time because Meniere’s disease and being tired isn’t a good combination.

By the way I also took a hearing test at the doctor’s office and the results were pretty much what I expected. The hearing in my right ear is very bad (meniere’s ear) and the hearing in the other is okay. The ENT did say that I was a candidate for a hearing aid; unfortunately my health insurance doesn’t cover hearing aids.

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Meniere’s triad

2011-10-30T05:00:00.000-07:00

The other day I saw something on the web that referred to the Meniere’s triad which basically says that the main symptoms of meniere’s are vertigo, hearing loss and tinnitus. That is pretty much on the money however I wouldn’t say that it covers all the major symptoms.

In my own case the vertigo and the hearing loss are the definitely the worse symptoms. The tinnitus that I have isn’t as bad as what others have to deal with although as I get older the rustling sound seems to be getting a lot louder. But it doesn’t have the impact that the hearing loss and vertigo has for me.

Another classic symptom of meniere’s is aural fullness usually found in your bad ear. The feeling that your ears are filling up can drive you crazy and also make you wonder if an attack is around the corner. To me it sometimes feels as though I have a lot of ear wax build up, even though I don’t. In an earlier post I wrote about aural fullness and there was a pretty good response from it. There were a lot of comments regarding tubes and other devices that might help with the situation.

Although I don’t have any hearing problem in my right ear (at least that is what I have been told) the feeling of fullness also exists there from time to time and I’m not sure what causes that over than cold weather and possibly having a cold.

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Is Meniere’s making you look older?

2011-10-23T05:00:00.000-07:00

Recently I had a few pictures taken with my son and I have copies made to send to my Mother. Of course you loved the photos of my 10 year son but she seemed surprised at how I looked. She wasn’t sure if I had just gained weight or what but I didn’t look the same as the last time I saw her. My weight has remained constant over the past few years so that wasn’t it (although I could certainly lose some weight!) so the only reason for my appearance change must be the Meniere’s disease.

I wasn’t convince that it was the meniere’s I thought that it was just me aging till I looked at a few pictures right before I started seeing the symptoms of meniere’s. In the seven years of meniere’s I really have aged a lot! Even my wife admits that dealing with all this can be seen in my appearance. And considering what you go through with this disorder it really shouldn’t be a surprise.

I remember a comment from Lauri about a week ago where she also said that meniere’s has been dragging her down as well..

“I'm SERIOUSLY glad that you guys aren't looking ill...I'm jealous, because frankly, I look like hell.”

Now, I certainly know where she is coming from.

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Meniere’s disease and dental amalgam

2011-10-16T05:00:00.000-07:00

First of all I would like to thank everybody for their comments on the last post. It is good to hear about other folk’s experience and how they feel about Meniere’s disease.

The other day I received a comment about something called dental amalgam. At the time I couldn’t remember if I had heard anything about before so I looked it up. It has to do with the amount of mercury that is found in dental fillings and whether it has any effect on meniere’s.

From what I read this has been a controversial subject for quite a while. There have been many folks that say that mercury or silver fillings can be toxic, among other things. But that isn’t the opinion of the CDC that says it is very safe.

As far as the connection between it and Meniere’s disease, I really don’t know. I have read that mercury poisoning can have effects on our hearing and possibly tinnitus. There are also similar symptoms of mercury poisoning and Meniere’s disease. Does it all add up to say that mercury poisoning or dental amalgam can cause Meniere’s disease, I just don’t know about that. While I don’t always trust everything that the CDC or the government says there doesn’t seem to be a lot of evidences to conclude that there is a connection.

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What is the biggest problem about Meniere’s disease?

2011-10-09T05:00:00.000-07:00

Meniere’s disease presents so many possible problems that it is difficult at times to think of the one that really brings you down. And part of the mystery of Meniere’s disease is that it can be very different from one person to the next. You might have a lot of ringing in the ears (tinnitus) where as someone else might not. In my own case I have some buzzing sounds but not as much as others. The vertigo or dizziness is certainly different with some folks, your attacks might be longer and some might be more intense. So it is hard to pinpoint which is the biggest problem.

Personally I would have to say that not working and having a lot of stress about that is probably at the top of my list. Although the counseling sessions that I had certainly helped. (I would recommend counseling if meniere’s has really got you down) another stressor that we have talked a lot about is the worry of when an attack is going to happen. This can drive you drink (just kidding don’t drink it only makes it worse)

Of course the biggest problem for most people is dealing when an attack actually happens. It comes out of nowhere and it could happen at any time. It is certainly tough to be prepared when an attack begins. Even when it is over you feel horrible and exhausted, the recovery, which could take days, is like getting over the flu.

So what is your biggest Meniere’s problem?

Let me know

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Meniere’s and acoustic neuroma

2011-10-02T05:00:00.000-07:00

In a past post I had written about conditions that are similar to Meniere’s disease. One of those conditions is acoustic neuroma. In the past week I received a comment asking about the condition.

According to the Library of Medicine acoustic neuroma is “a slow-growing tumor of the nerve that connects the ear to the brain. This nerve is called the vestibular cochlear nerve. It is behind the ear right under the brain. An acoustic neuroma is not cancerous (benign), which means it does not spread to other parts of the body. However, it can damage several important nerves as it grows.”

Common symptoms of acoustic neuroma are vertigo, hearing loss and tinnitus which are all common with meniere’s too. Fortunately surgery and radiation can remove the tumor that is causing the problem.

This is the comment from Maureen…

“I just experienced my first episode of vertigo yesterday. It was a drop attack as I've seen others describe it. Walking one minute, the next falling to the floor and hit my face on the wall while trying to stabilize myself. Very disconcerting, I have to say. I have been diagnosed with an acoustic neuroma in my right ear. The problem is that my left ear is giving me the trouble now. Aural fullness, very loud ringing and now vertigo. The neuroma has taken most of my hearing in my right ear, so I'm scared to lose more hearing on the left. Has anyone ever heard of suffering from both meniere's and an acoustic neuroma?”

Although the symptoms are similar I am not really sure if you can have them both at the same time. It is best to check with your ENT.

For more information go to the acoustic neuroma association.

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Meniere’s disease and the burnout question

2011-09-25T05:00:00.000-07:00

Whether Meniere’s disease actually burns out after a period of time or not is a common question. Unfortunately like most things dealing with meniere’s there really isn’t a definitive answer. I know that many folks believe that meniere’s runs in stages where the last stage is the burnout; while there may be some truth to that I don’t think that it holds true for everyone. From the numerous comments that I have received over the years it seems that meniere’s may go away for a while but eventually comes back, which I know is very disheartening.

Another thing to consider is what treatments you have pursued to control your meniere’s disease. Maybe starting out with a low salt diet, that helps some folks, or maybe going through the gent injections (which didn’t seem to help me) or even the drastic measure of having surgery, surely all these would somehow change the course of meniere’s.

Peggy also found this information about Meniere’s disease burnout on the web. I’m not sure what the link is.

“Some doctors say that Meniere's "burns itself out," leading patients to erroneously conclude that Meniere's will simply fade away and that they will be "cured." However, "burnout" does not mean this at all. "Burnout" refers to a condition where Meniere's Disease has progressed to the point where it has finally destroyed the entire (or nearly the entire) vestibular function in the affected ear. At the point of burnout, the patient has little or no vestibular function left and the body may or may not compensate in other ways. The vestibular function in the other ear may take over and/or the patient may learn to balance through visual cues (with some degree of difficulty occurring during darkness). However, nothing stops the relentless progression of Meniere's Disease, and it will continue to destroy hearing, produce the sense of fullness, and produce tinnitus -- even in patients who are "stone" deaf (because of Meniere's Disease or otherwise). While some patients reach a rotational vertigo-free, or nearly rotational vertigo-free, state of burnout, burnout is a progression, not a cure, and there is no certainty of any one patient reaching burnout. Not all doctors (and not all patients) believe that "burnout" can happen.”

One also has to wonder what people did many years ago when no one had ever heard about meniere’s let alone any of the treatments of today. I can’t imagine how anyone could deal with the attacks and dizziness without even knowing what was going on. It would be interesting to find out if in later years their meniere’s burned out.

Hopefully with more attention on Meniere’s today there will be breakthrough in treatments that will control this menacing disorder.

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Quick Meniere’s attack

2011-09-18T05:00:00.000-07:00

I always find the comments that the blog receives very informative and though provoking. A couple comments from the past week made me think about a kind of meniere’s attack that I have had in the past. The feeling that the head is being pushed backward extremely hard without warning apparently is familiar to other meniere’s sufferers.

The first comment is from Ali describing an attack that he had after playing a video game on his phone…

I was on my smartphone, and i downloaded this game which was very visually active. After 5 minutes i had this attack for 15 seconds. It was the worst level of spinning i have ever had in my life, if it had carried on for the usual 4 hours meniere’s style attack i would have been sectioned as i was shouting in fear when it happened. Has anyone ever had this is this a drop attack?).

And Lauri responded…

When you had the fast/furious attack, did you have the sensation of being smacked hard backwards? I did. I never actually moved backwards. But the sensation was there.
NO warning for me with this attack.

My attacks that have been similar have usually occurred when I am on the computer. I will be looking at something and all of a sudden my head will jerk uncontrollably to the left leaving me rather dazed. It was frightening to say the least.

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What triggers an attack of meniere’s

Aural fullness and meniere’s disease

Meniere’s, vertigo and lotion

2011-09-11T05:00:00.000-07:00

We all by now know the big differences between Meniere’s disease and vertigo. The cause of Meniere’s disease is unknown, although there a lot of theories about what brings it on and the cure for meniere’s is also unknown. Vertigo on the other hand is caused by an inner ear disorder that creates a false sense of movement. Vertigo can be corrected by a type of therapy called canalith repositioning procedure which moves particles around in the inner ear to stop the motion sensors in the ear from sending the wrong signals to the brain. But is there any other treatments, such as lotions that help with the dizziness?

The reason that I am writing about this is a commercial that I saw the other day for a lotion that is applied behind the ear and it supposed to curtail the vertigo. I am not going to write about any specific products but you have to wonder if anyone has found any relief from them. The commercial only mentioned vertigo and not meniere’s which is not surprising because most folks have heard about vertigo, whereas, unfortunately meniere’s still isn’t very well known.

I have a rather healthy skepticism about any claims that certain products are cure all for whatever ails you, especially when it comes to inner ear disorders such as vertigo and Meniere’s disease. However I always want to hear about anything that might help with these dreaded problems.

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Timing your Meniere’s disease

2011-09-04T05:00:00.000-07:00

Predicting when your next meniere’s attack is like timing the stock market, in other words it really isn’t effective. I know that at one time I thought I knew when the attacks were about to happen and it usually was after I had forgotten to take my medication or I had just taken a long ride in the car or a plane ride. In the past these things have made me lightheaded and prone to start spinning. Unfortunately meniere’s isn’t all that predictable, I have had many attacks out of the blue even when I was in a situation where I didn’t have much stress. Of course I’m not saying that stress doesn’t play a big part of Meniere’s disease because it does, I am saying that meniere’s is very unpredictable.

At times we all have to scratch our heads and wonder why the spinning and dizziness comes on at certain times. I’m not really sure myself because meniere’s has been such a mystery to me and most folks that have it. The really strange thing is that there seems to be a lot of information out about vestibular problems such as meniere’s but there is nothing solid on why it happens and nothing on how to stop it. Although there is some research going on right now that looks promising.

I would be really interested to hear your opinion on meniere’s unpredictability and how you try to keep it all in perspective.

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Is antivert good or bad for meniere’s?

2011-08-28T05:00:00.000-07:00

I have written many times about how antivert has helped me out when I think an attack is about to happen. Whether it was the medication that helped or maybe I just wasn’t about to have an attack, I don’t know. I used to feel that way about valium but I stopped taking that because it seemed to be making me awfully tired. Of course antivert does the same thing. In the past couple of weeks I have taken the antivert and it almost seemed like really wasn’t helping much at all. In fact I felt worse the rest of the day and even the following night. I am starting to reconsider whether to take meclizine at all.

This would be a real turnaround for me because I have depended upon this med for a long time. I carry it with me wherever I go and at the slightest feeling of dizziness I take one, unfortunately taking this med means that I will be groggy the rest of day. But you probably remember that one doctor earlier this year told me to stop taking it because it didn’t help even though other doctors suggested that it did. It is all very confusing.

But the big question is what if I feel that an attack is about to come on, what do I do? Since I am on disability (with a private insurance company from my previous employer) I don’t drive very much and I spend most of my time in my home so when an attack hits I will just lay down. I will see what happens and let you know.

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Where is my antivert?

Is a meniere's attack about to happen?

Antivert and meniere's disease

Prism lens, Meniere’s disease and juggling

2011-08-21T05:00:00.000-07:00

Our balance depends on a few things; vision, the inner ear and sensory input, which is contact from your arms, hands and feet among other things. As most of you with meniere’s know the inner ear stuff is a big problem for me and lots of other folks. The vision, I believe, is also very important. I have had vision problems since I was a kid and in the past few years I had cataract surgery plus glaucoma. After the surgery the meniere’s seemed to be worse. A coincidence, maybe but I don’t think so. I am not saying that I shouldn’t have had the surgery because it certainly has helped my vision, but it definitely had an effect on my meniere’s.

A recent comment came from FP who lives in Belgium who described their situation. FP was put on medications such as Betaserc and given treatment to help put the “crystals” back in place, which is a treatment that some doctors use for vertigo. FP also started to juggle balls to improve hand eye coordination which helped. It is really interesting to see how innovative some folks can get when they are stuck with this disorder.

Then FP was introduced to prism lens

“The consultation lasted two hours: I did tests I had never encountered before and was prescribed prism lenses. Not fully understanding how they work, please bear with this certainly unscientific explanation: apparently research has shown that by changing the light refraction using prisms in glasses, this can alleviate motion sickness and the sense of instability experienced by people with vestibular asymmetry. There’s nothing odd-looking about these glasses - they don’t look ‘different’.  When I put on these new lenses for the first time, it felt as if an invisible wire above my head was pulled tight and forced my head to the upright position. It was rather bizarre - and quite uncomfortable for the first six weeks with these new lenses. But after this - I threw the medicine away, and suddenly I came out of the fog: my concentration was back, my sense of spatial awareness returned. I no longer felt as if I would fall if I did not take extreme care walking down stairs nor did I waver when rising to make presentations nor did I feel disoriented after long flights. In short, I felt human.”

FP goes on to say that prism lenses don’t cure meniere’s disease but it does seem to help.

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Meniere’s disease and vision

Eyes playing tricks on me

Cerebro-spinal fluid and Meniere’s disease

2011-08-14T05:00:00.000-07:00

A couple of weeks ago Peggy left a comment about Cerebro-spinal fluid, which is something that I hadn’t heard about before.

What is CSF?

CSF is a clear, colorless fluid, that is around the subarachnoid space and the ventricular system which is in the spinal cord and the brain. It acts as a cushion and a type of protection for the brain and spinal cord.

Luckily I found that Dr. Hain had written about it here is an excerpt…

“Cerebrospinal fluid depletion may be caused by a leak, a shunt, inadequate production or too rapid absorption. Symptoms commonly include headaches, which are more severe in the upright position and are alleviated by supine or head-lowered below chest(Trendelenburg) positioning. Horizontal diplopia, change in hearing, tinnitus, blurring of vision, facial numbness, nausea, and upper limb radicular symptoms (tingling) may occur. These symptoms are nonspecific as they are commonly encountered in migraine and post-traumatic headache. Cognitive decline has also been reported (Hong et al, 2002; Pleasure et al, 1998).”

In another passage Dr. Hain that CSF sometimes resembles Meniere’s.

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Voice recognition and Meniere’s disease

2011-08-07T05:00:00.000-07:00

How many hearing tests have you had? I have had quite a few the common theme in every one of them is that my hearing in my left ear is getting worse, to the point of not being able to hear at all. Fortunately the hearing in my right ear is pretty good although at times I am not quite so sure. The hearing test finds out more than if you can just hear a sound it also tests the level of voice recognition. Lauri’s comment last week was the inspiration for this post.

Here is her comment…

When my left ear became deaf from Menieres

(except for the 24/7 tinnitus!)

I asked my Dr. about a hearing aid, but was told that the regular aid would not work for me due to my ear no longer having what they call "voice recognition". The Dr. said I could look into the bone anchored hearing aid.

Voice recognition really seems to be my problem also. I hear people talking (not always) but I just can’t make it out what they are saying. It can really be embarrassing when you have to constantly ask people to repeat what they just said, some folks are okay with it and others at times seem to be irritated by it.

Is voice recognition a problem for you also? And if you have a hearing aid is it helping you?

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Hearing loss and regrets

Meniere’s and going deaf

Surgery, hearing aids and Meniere’s