my life and meniere's disease

Meniere’s disease and gluten

2010-03-10T12:46:00.000-08:00

I have read various theories on what causes or agitates Meniere’s disease. The hydrops theory and the viral theory are usually the most popular reasons for meniere’s. As for agitating meniere’s or bringing on an attack, diet, mostly one high in salt is at the top of list. Smoking and alcohol are also bad. Another theory that I have read about lately is gluten.

What is gluten?

Gluten is a type of protein that is found in grains such as wheat, barley and rye. Gluten is also an important source of protein for much of the world’s population. Gluten is the substance in bread that allows it to rise before baking. It also gives bread its chewy taste.

Unfortunately gluten is also responsible for celiac disease which can be fatal. The gluten causes damage to your small intestine and also limits your ability to digest certain nutrients. Without those nutrients your body’s organs and functions can be severely affected. So with celiac disease wheat products are to be avoided.

The connection between meniere’s and gluten

I have read that some meniere’s patients have found that reduced intake of gluten can help lessen meniere’s attacks. It could also have something to do with wheat allergies agitating meniere’s because allergies have also been considered as something that provokes meniere’s. It seems reasonable especially if vertigo can be a side effect of gluten.

As usual there isn’t any concrete proof that gluten and meniere’s have a connection but I wouldn’t rule it out either.

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Meniere’s disease and doctor visits

2010-03-07T08:30:00.000-08:00

After my last trip to the doctor, I don’t know when I will be going back, if at all. As I wrote on this blog I wasn’t very satisfied with the visit. I know that I am not alone in this regard. For some reason it seems difficult to find a doctor who truly understands the emotional aspect of this disorder.

Of course very few ENTs have Meniere’s disease so they don’t really have a grasp on how debilitating and frustrating this is. One of the first ENTs that I saw told me to live with it, like how some people live with fallen arches. Yes, it compared meniere’s to fallen arches, which is ridiculous, considering all the procedures and medications that you should try before throwing in the towel.

I do know that I need to occasionally go back to the doctor at least to have prescriptions filled but other than that what is the use. I certainly don’t want to have another gent injection because I had four done in 2008 and I don’t think that another would help. I have little doubt that there isn’t any balance left in my bad ear so another shot wouldn’t make sense, at least to me.

One thing is for sure I will continue to research the internet on Meniere’s disease. The web has been a godsend for information about everything and it is very important to continue to learn as much as possible about inner ear problems, tinnitus, vertigo and meniere’s. The feedback that I have received from this site and from social media sites has helped me tremendously not to get discouraged about my situation.

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Meniere’s disease and droperidol

2010-03-03T09:19:00.000-08:00

I am always curious about what medications are given to Meniere’s disease patients. Most of the time patients are prescribed Antivert (Meclizine) or valium and if you live anywhere, except America, Serc. I received a comment from a post that I had done on fatigue last year. The comment referred to a drug called Droperidol.
Anonymous said...

My doc did an ENG and gave me Droperidol drops to take 3+ times a day for a month afterwards. My nausea and headaches have been less severe however it has not helped the spin factor. My vertigo is mild by comparison but is constant and consistent. Meclizine didn't work. Currently I'm on clarinex in the morning and Valium and Elavil at night. Any suggestions on getting back to baseline would be appreciated

What is droperidol?

It seems that droperidol is a rather potent and serious medication. According to the MayoClinic.com this medicine is used to reduce nausea and vomiting after surgery. It can also be used to combat extreme agitation and combativeness as well as to make you sleepy before a procedure. The website also lists about a page of medications that shouldn’t be taken with droperidol.

I also found out that droperidol has a connection with histamine, that is often mentioned with Meniere’s disease. It seems to make sense that it is used for Meniere’s disease especially if it reduces nausea and vomiting. As far as reducing the spinning one reader found that it didn’t help.

Unfortunately the drug doesn’t seem to be easy to get according to this comment that I received.

Anonymous said...

My doc recently gave me a script for the droperidol. Am glad to hear it is effective for you. It has been very difficult to find a pharmacy that could compound it due to low demand but I finally did in Houston near the Texas Medical Center. Was told it is often easier near a large medical center because they are used to working with docs who ask for the not everyday. It is not covered by my insurance. However if it is helpful the $65 cost is well worth it.

But like serc, if you think that is going to be effective and you can get a prescription and an okay from a doctor you are going to do whatever it takes to fight this miserable disorder.

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Gentamicin Injection questions and answers

2010-02-28T07:17:00.000-08:00

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,
Justin

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.!
bry

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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Meniere’s disease and eyes playing tricks

2010-02-24T09:07:00.000-08:00

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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Meniere’s disease and heredity

2010-02-21T08:30:00.000-08:00

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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My last appointment with my Meniere’s disease doctor

2010-02-17T18:36:00.000-08:00

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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Meniere’s disease diet

2010-02-14T08:40:00.000-08:00

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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Beginning of Meniere's at an older age

2010-02-10T10:53:00.000-08:00

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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Meniere’s disease and Sleep

2010-02-07T11:13:00.001-08:00

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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Meniere’s stories about initial doctor’s visits

2010-02-03T10:19:00.000-08:00

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.

David

Meniere’s Disease and Topamax

2010-01-31T10:59:00.000-08:00

It seems that I learn something new about medications that help with Meniere’s disease everyday. I received a comment from one of my readers regarding the medication Topamax, which is a medication that I hadn’t heard of (at least I can’t remember if I did). As I have written on an earlier post there seems to be a connection between migraines and Meniere’s disease.

Laura writes

I have had violent Meniere’s for quite a few years, one thing that helped reduce the number and severity of these attacks was an anti migraine medication Topamax... it reduces the fluids in the ears, nose and throat. sort of dries everything up. I find that Serc and that have kept me free of those big attacks for over 2 years. Before I was getting attacks every week. You eventually get used to the eye dryness... my meniere’s specialist is quite interested in trying others on this.

Topamax is anti-migraine medicine that is taken daily to prevent migraines. It has also been used to treat epilepsy in children. Like other medications there are side effects to this drug such as numbness and tingling, fatigue, taste change and weight loss among other things. Talk you your doctor to see if it is right for you.

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Meniere’s disease and brain fog

2010-01-27T08:25:00.000-08:00

Do you forget things more then you should? Do you have times when you just can’t concentrate on what you are doing or sometimes do you forget how to do the easiest things? If you are older (like me) you might think that age creeping up on you. But in reality it might be another side effect of Meniere’s disease, usually referred to as brain fog.

Why would Meniere’s disease cause any problems to your ability to think?

I am not a doctor so my observations are not scientific, just my observations. After a particularly bad attack my mind seems to be numb, I can’t really concentrate very well and my memory isn’t too good. Usually I will become a little more cognitive after a couple days post attack. As for the reason, I am not sure. It could be the uncontrollable spinning for a long time that shakes up my senses. For those who don’t have meniere’s it might not seem that bad to have your head spin, but it is!

Another factor could be the medicine that I take to recover from the attacks, most of them are sedatives. If you take pills on a regular basis to combat the meniere’s, your brain can’t help from being effected by it.

As for any other reasons for the brain fog, it could depend on the individual. I know that I am not the only one who has had brain fog because I have read other reports for meniere’s patients that have had the same experiences that I have had.

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Meniere’s disease and positive thinking

2010-01-24T08:13:00.000-08:00

I am very fortunate that I receive a lot of very informative and thought provoking comments from this blog. I received one a couple of weeks ago from one of my regular readers about his experience with therapy and his meniere’s. although I don’t consider meniere’s as something that you can just stop by changing the way you think, I do think that keeping a positive outlook is very important.

This is from Jikke DeGroot

first of all: thank you for your weblog about meniere's disease. It is very helpful. It provides information, experience and hope. That is a rare combination ;-).

I would like to tell you about something I'm trying at the moment. I have had M for quite a few years now. The first attack probably was somewhere in 2004, after that I had one or two attacks a year (without knowing what it was), but for two years now I have had attacks every few weeks which leaded to an official diagnosis of M.

From september on I'm in a really bad episode. The doctors have done some tests again, and according to them one of my balance systems (right ear) is not functioning any more. They said that that should mean that the attacks should lessen (which unfortunately is not really happening yet..), but also that it will never come back to normal again.

So, the next step they advised me about, is to have my brains learn that they shouldn't listen to that particular ear any more. I know it sounds crazy, but on the other hand it may be very logical. The doctor said that your brain gets multiple signals involving your balance (from your ears, eyes, feet, muscles in the neck etc) and that it uses these signals to define your balance at that moment. With M one of those signals is wrong which causes the vertigo attacks. What the brain needs to learn is that it shouldn't use that broken signal any more in its calculations. So that's what I'm working on at the moment.

The way to do it is a bit complex. First you should try to do as much as is possible without creating actual attacks. That's always a fine line to walk on, so it goes wrong once in a while, but that's ok. Second, every time you feel an attack coming on, you nearly literally tell yourself: this is just a wrong signal, stop listening to it. For me it helps to keep the panic away and that should do the trick. When you panic, the brain goes into a frantic response and does what it is used to do (which means using all the signals, including the wrong one). If you don't panic, it will take the time to correct itself. So attacks are a lot shorter. And, according to the doctor, after a few months of learning it should lessen the number of attacks as well.

I started this a few weeks ago, so I don't know if it will work on the long run. I do know that the few attacks I had were a lot shorter, from 1-2 hours lying in bed to 5 minutes sitting at the table. For me that's enough to keep trying...

(The doctor is a clinical psychology doctor at an academic hospital)

Have you ever heard about this from others?

thanks,

Thanks Jikke

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Amazing statistic about Meniere's Disease

2010-01-20T18:54:00.000-08:00

I found out something rather amazing about Meniere’s disease. According to menieresfoundation.org there are two million people in the USA with Meniere’s disease. 2 million people with meniere’s, 1.4 with epilepsy and a half a million with Parkinson’s disease. So why is it that relatively few people know about meniere’s?

The first reason is that the disease itself is so undefined. At least with other serious diseases the medical field has a better understanding of causes and possible treatments. With meniere’s there is no cure and like I have said a million times it is difficult to say what brings on the attacks.

People with meniere’s look like they are okay most of the time, at least that is the perception with a lot of people. Those who aren’t familiar with meniere’s think that you get a little dizzy or light headed for a short period of time then things are back to normal. But that isn’t the case, the attacks could happen at any time and the spinning and the vomiting are something you just can’t describe. Another thing that people don’t realize is that after an attack you just don’t go back to what you were doing. I have been laid up for days after a particularly bad attack.

One more reason is taken seriously and this is important, not all doctors think that it is that difficult to live with. As a matter of fact one ENT told me to do exactly that, LIVE WITH IT. Thankfully I didn’t listen to him! Another doctor told me that at least I wouldn’t die from it. Well, that is good to know when you are lying face down on the ground and throwing up!

Update on the valium post

2010-01-17T08:44:00.000-08:00

Recently I wrote a post questioning whether valium is an effective treatment for Meniere’s disease. Just to recap I take Valium and it seems to work for me. Here are a few comments that I received.

From Nicki (Nicki of the peripheral view)

Valium has been a real lifesaver for me. i carry it with me everywhere i go. when i feel an attack coming on, I put 1/2 of a 2mg tablet under my tongue and that's usually enough to stop it. if i feel i need more, I’ll take the other half. i don't take it on a regular basis. i do take klonopin on a regular basis. My doc explained it to me like this. Valium works very well because it works quickly but it also leaves your system quickly. Where as klonopin works slowly but stays in your system a long time. i take 0.5mg 3x/day. That medication got me through another year of teaching. This year, I’ve not been so lucky. i remind myself that this will pass. this disease will go back into "remission" at some point. i did very well for 9 years. Only 2 vertigo attacks and both of those happened because the tube came out of my ear and my meniett wasn't working.

In my opinion, valium is good to have around just in case. good luck to you!

bigdaddythinks (bigdaddythinks) said...

David, I'm on pretty much the same plan you are except for the Antivert. I take T-Bio 2/X per day. I take Valium (2mg pills) only on the days when I absolutely must remain upright. For instance, I started graduate school six days ago. The entire program is through distance learning except this first week where I have had to travel to the campus and study 12 hours per day for seven entire days. It's important to me to participate so I took a Valium every morning. I had planned to take a second in the afternoon just in case but I haven't needed to. There were two times when I thought I might need to go lie down but it passed. When I get back home and into my normal life again I might experiment with not taking valium on days when I normally would, just to see what happens. I'm not worried about getting addicted to valium and it doesn't make me sleepy at all. But I'm also doing a bunch of different things for my MM and I'd like to start finding out what works and what doesn't. I need a prescription for Valium so I thought I'd start there. Then again, I know it works so maybe not. When I need my pill I'm also going to try Nicki's trick of taking my pill sublingually. I bet it tastes like crap but if it's fast acting I can endure the taste. I've found that I have only about 15 minutes' warning for attack and I know taking pills under the tongue makes them absorb faster.

Thanks for the comments about Valium.

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Are you sure that you have Meniere’s Disease?

2010-01-13T10:23:00.000-08:00

The doctor that I had an appointment with after my first attack wasn’t completely sure what I had. I described the spinning and the nausea. I also told him about being so tired. Meniere’s disease wasn’t the first thing that he thought that I had.

Meniere’s disease isn’t rare but it isn’t has common as other disorders. In reality it is even difficult to say how many people have it. The reason that I think that it is difficult is because it is so hard to make sense of. There isn’t a cure, although there are things that you can do to try to control it (not always successful!). And as far as preventing it from happening is impossible. I know that ENT’s tell you to cut back on the salt but that doesn’t help everybody, at least it didn’t help me.

Surprisingly enough there are some diseases that have similar side effects to meniere’s. Vertigo can be a symptom of Lyme’s disease, although there are a number of other symptoms that don’t happen with meniere’s. A type of syphilis called otosyphilis can resemble Meniere’s disease, for an in depth explanation of otosyphilis Dr. Hain has an article on his website. Acoustic neuroma (tumors) can also have similar symptoms too.

One doctor told me that Meniere’s disease is usually the verdict after every possible disease or disorder is ruled out. Hopefully if you know someone who is experiencing dizziness and nausea it will determined as something besides meniere’s.

I wouldn’t want this sickness on anybody.

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Are you in control of your Meniere’s disease treatment?

2010-01-10T08:54:00.000-08:00

In a past post I wrote how important it is to find the right doctor when you have Meniere’s disease. Not only is that important but it is also essential that you take an active part in controlling your treatment of Meniere’s disease.

Now I am not saying to stop going to a doctor what I am saying is not to go into any visit without being up to date on meniere’s. And really you should think this way about any illness that you have, information is very powerful and puts you in a position where you can make informed decisions.

As I have written in the past I went to many doctors before I found one that I was comfortable with and even with him I didn’t agree with everything that he said. After I thought that my gent injections had failed, he suggested surgery; I did some research on it and even got a second opinion from another doctor. I decided against the surgery. I was glad that I did because I found out that the gent injections finally did work.

Why it is especially vital to find out all that you can about meniere’s is the fact that there isn’t a cure. That tells me that there is still a lot to be learned about why this occurs and how it can be stopped.

So read as much as you can on meniere’s and don’t be afraid to ask your doctor questions. If they aren’t responsive to your questions there are other doctors that will answer them.

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Does valium help with Meniere’s disease?

2010-01-06T09:49:00.000-08:00

Last year I wrote a blog post about valium and Meniere’s disease. Since then I have read that some people haven’t had much luck with it or they are worried about the sedative effects that it has. My question is does valium help with Meniere’s disease?

In the middle of last month my prescription of valium ran out. I had already called in one emergency refill and I knew that the doctor would insist that I come in before getting another prescription. I really didn’t have the time last month to schedule a doctor’s appointment so I thought that I would forego with taking the valium till I could get a prescription from the doctor.

In retrospect it probably wasn’t a good idea. Just the thought of not taking the valium stressed me out. I worried that it was a vital part of my medicinal routine that not taking it would lead to me having an attack. I had taken valium on a regular basis since the beginning of last year, although I can’t say for sure I think that it has helped me.

Over the couple of weeks that I didn’t take valium I certainly felt a little light-headed than usual and I definitely took more Antivert than I normally do. And that isn’t a good tradeoff because the valium, at least to me, doesn’t leave me tired like the Antivert does. I was also taking Phenergan which is stronger than the Antivert.

Finally I decided to bite the bullet and go to the doctor and get my prescription of valium. I don’t know that it is helping me but I don’t want to break up the routine that I have had over the past year. All things considered 2009 wasn’t that bad for meniere’s.

I would really like to hear from anyone who has had good, bad or indifferent experiences with valium.

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Not letting the Meniere's hold him back!

2010-01-03T08:06:00.000-08:00

I recently received a comment from a reader that doesn’t let the meniere’s hold him back. I don’t know if I could do the things that he does even if I didn’t have meniere’s. This is from Allie Largent, San Antonio, Texas

David, I have Meniere’s and I am a triathlete! You can still do it! You just have to be careful about it! I am on some medication that takes care of the worst of it - and there are some days where it is out of the question - at least the swimming and the running - but I can always cycle on my wind trainer in the garage. I have found that if I do it early as soon as I get up and break a sweat for some reason my side effects are lessened GREATLY!

I have worked through he worst of it and swam with a full blown episode but moved to the shallow end of the pool - because I freaked out a bit. But I learned - earplugs a really good set are the trick there and to make sure no cold water goes in the ears! And worst case scenario if I did the breast stroke I could manage to finish the workout. Also running - I tend to run outdoors more because the treadmill just seems to make it really bad - unless I can stand to focus all of my attention on just one point the entire time.

But don't give up! I did much better after this hit because I worked through it - the doctors were amazed that I had figured out some of the little tricks you can use to keep your balance and when it really got bad before my medicines were adjusted I did have to back off almost completely - but when I did the vertigo that goes with this just worsened - so I kept up the cycling and doing whatever I could. But I swear - the exercise in the morning really helps and when I don't do it - I am a little unstable and have a much harder time.

Get back to it - you will feel better!

Keep up that great spirit Allie! You are an inspiration to us all.

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David

My life and meniere's disease 2009

2009-12-30T14:53:00.000-08:00

The year 2009 has almost come to an end and I am not sad to see it go. But I shouldn’t complain too much because all in all it was a good year for me and my meniere’s disease.

The year started with me going back to work after being on disability for 2 months and the first day that I was back I got sick, not real bad sick like throwing up and needing an ambulance sick. I think it was caused by the stress of being back at work.

In January I started to blog about my experiences as someone with Meniere’s disease. I wrote about 2 posts a week throughout the year. I found the experience to be very informational and rewarding. I received a lot of great comments and input from all the people that have read and continue to read this blog and I am very appreciative of that. Hopefully I will be able to continue my blog and my other blogs in 2010.

As for how I felt during the year, I must say that the meniere’s has been a lot better than in past years like 2008. I didn’t have any ambulance rides or trips to the emergency room in 2009, although I did have some rough patches during the year, especially after my plane flight in the summer.

Well, I hope that 2010 is a good year for you and me. And I hope you will continue to read my blog and comment.

Thanks and Happy New Year!

David

Meniere’s disease and Allergies

2009-12-27T07:45:00.000-08:00

Recently, someone wrote a comment on one of my posts about the connection between Meniere’s disease and allergies. In one past post I briefly mentioned that allergies played a role in meniere’s. After doing a little more research it seems there is more to be said about meniere’s and allergies.

As many of you know, the reason you have meniere’s is as uncertain as the ways to relieve the symptoms. The general reason has always been due to excess fluid in the inner ear, but of course other doctors disagree saying that it could be due to an immune disease like herpes simplex. But one idea that should be discussed is whether meniere’s is caused by allergies.

An allergy is something that plays havoc with our immune system, not necessarily right away but it does cause a bad reaction like a skin rash. So that is interesting because there again is a connection between an immune disease, which could cause meniere’s, and allergies that affect the immune system.

A study done by a Dr. Jennifer Nerebery found that people with inhalant allergies or food allergies have a higher rate of meniere’s than those who don’t. The study concluded that dietary restriction and immunotherapy have benefited Meniere’s patients.

One report that I read didn’t think there was much evidence to connect meniere’s with allergies because only 1 in 3 meniere’s patients tested positive for allergies. Well, the problem with that logic is that most people with meniere’s aren’t tested for allergies at least I wasn’t. So this might be a case were there hasn’t been a lot of research done concerning allergies and meniere’s. As I have said before you shouldn’t rule out anything in regards to meniere’s whether it is a cure or a cause.

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Meneire's Disease and the Holiday Season

2009-12-23T09:59:00.000-08:00

I guess I should have written about this earlier but during the holidays it is always a good idea to watch what you eat especially if you have meniere's.

I haven't been really careful about what I have eaten this holiday season and I think I am paying for it. I don't know if it is the proliferation of candy, especially chocolate, or cookies that I have been eating that has caused me to feel so bad. I know the smart thing would be to just stop eating them but unfortunately the smart thing usually isn't the easy thing to do.

Chocolate seems to be something that brings on attacks from what I have read. I guess it is the caffeine in it that causes it or maybe something else. I can imagine that the sugar in cookies and candies can't be very helpful either. I tell myself to eat in moderation, but you know how that goes.

Another Christmas food that I have to be careful about is baked ham which has a lot of salt in it. Salt really isn't a trigger for me but I don't want to push my luck. I don't eat that much of it so I ought to be okay. And I am careful not to put any salt on anything I eat.

So be careful not to overdo it.

Have a happy Holiday!

David

Meniere’s disease and steroids

2009-12-20T06:44:00.000-08:00

I have read from different forums and emails that steroids have been prescribed for Meniere’s disease. It seems that it can be injected in the inner ear or taken orally. If it is anything like the gentamicin injections I can’t imagine that it would be too pleasant of a procedure.

To get some information on steroids, I went to Doctor Hain’s website. He has a lot of article and graphs that easily make meniere’s more understandable.

Dr. Hain doesn’t seem too enthusiastic about steroid use to combat meniere’s, suggesting that it is more or less a last resort. The theory behind steroids is that it decreases inflammation in the ear and increases labyrinthine circulation. According to Dr. Hain the shots only last a few days before you have to another shot. Numerous shots don’t sound too good to me, especially after my experience with the gent injections! He recommends the gent injection over the steroid usage.

Dexamethasone is one of the most widely used steroids for this procedure. It is part of the glucocorticoid class of hormones that is also used for rheumatoid arthritis, Skin problems, and allergies among other things. Some of the side effects are insomnia, blurry vision, high blood pressure and swelling.

I would like to hear about anyone’s experiences with steroids or any comments

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Meniere’s disease and exhaustion

2009-12-16T10:52:00.000-08:00

During the past few weeks I have had more than a few meniere’s attacks. They haven’t lasted too long but long enough to remind me that I still have to deal with this disorder. Besides the meniere’s attacks I have also had the feeling that an attack was about to come on quite a few times. I took the Antivert at times and at times I took the Phenergan. I think that they helped stave off attacks with they come with side effect, exhaustion.

After an attack of meniere’s especially a bad attack you feel like you have run a marathon carrying weights on your back. Not only are you physically tired but mentally tired as well. The stress as you well know can wear you out also. Recovery time from an attack could be a day or even days. After one particularly bad attack I remember being exhausted for about a week.

What really keeps you from getting your energy back is the medication that meniere’s patients usually take. Antivert, Phenergan and valium all work to some degree but they all make you tired especially the Phenergan, which I usually only use when I am extremely sick. It really becomes a difficult decision for me sometimes, if I take the medicine I still might get sick and I will be even more tired. But if I don’t take the medicine I risk having an attack.

Another issue that I have read somewhere is that you may build up a tolerance to Antivert. I don’t know if that is true or not (I hope not!)

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