Continuing life with Meniere’s disease

It seems that I have been in a holding pattern in my life since last May when I went back on short term disability. A lot has happened since then. During the summer I had 2 more gentamicin injections that didn’t seem to help. I continued on disability till it ran out and so did my job. Right now I am in the middle of trying to get on long term disability and it has been really difficult. The social security disability which I applied for in November takes time to complete. I know that most claims the first time through are rejected which will lead to my appealing the ruling. It will all take time.


So what do I do now?

I am going to continue to research Meniere’s on line and try to learn as much as possible about it. Knowledge is powerful and you can never have enough of it. One thing that I haven’t been doing is walking. I can blame the weather on that for now but I think it is very important to try and do some kind of exercise. Because of my balance problems I will definitely be careful when walking which will help my feel better in this time of such uncertainty. And I am also going to try to lose some weight by eating right (that should be more of a challenge than walking;)).

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Loud sounds drive me crazy

I have written a couple times in the past few years about how noise gets the best of me. I am not sure why but loud sounds drive me and my meniere's disease crazy. The other day I took my son to the local indoor pool so he could swim. For now I have pretty much given up on swimming but I still enjoy watching my son in the water. There was a birthday party going on and the place was filled with children and as expected they were very loud. Usually I can muddle through and put up with the noise but for some reason it was particularly brutal that day. At one point I had to get up and walk into another room to get away from the noise.



The strange part of it is that I have lost a good deal of my hearing so it doesn’t seem to make sense that the noise would have that great effect on me. But then again after all the gent injections that I have had and the many Meniere’s attacks I believe that my ears have become extremely sensitive. I’m not sure but I think so. Another thing about noise is that it contributes to the headaches that I have been having lately.

As usual with Meniere’s disease so many things seem to be a mystery.

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Meditation and meniere's disease

Whenever I read about someone who meditates or does yoga or tai chi I think that must be a great way to relieve stress and tension. But for some reason I never get around to trying any of it. I don’t know why but I just don’t. With all the stress that is involved with Meniere’s disease it would certainly be worthwhile. One reason that I have been thinking about it lately is a comment that I received that talked about the benefits of meditation and meniere’s disease.



Here is the comment…

I have started meditation classes about a year and a half ago. After a while it has certainly helped me to be less effected by problems or stress.
It helps because you learn to look at what happens from a distance and understand why you feel the way you feel. At first I was amazed at the amount of unnecessary pressure that you get from people around you and from yourself (!). Things usually feel less intense now.
Also I feel I am usually not panicking anymore during attacks. It is just something that happens.
During meditation I can feel it when I am less stable, sometimes days before I have an actual attack. I think I have been able to prevent some of the attacks that way, by finding time to rest or avoid stressful situations when I felt to be unstable.
Even if it doesn't help you with your meniere, it is certainly a good method in reducing stress levels. It won't harm, so give it a try :-).


That is really interesting that while they are meditating they can feel that a Meniere’s attack is coming up soon. It sounds like a great idea to reduce stress. If anyone else has had any success with meditation let me know



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The way I now look at Meniere’s disease

I remember the first few years of my life with Meniere’s disease as a time of worry and hopelessness. Depression was taking over as I thought about how difficult things would be with this disorder. How was I going to be able to do anything in life with the risk of a Meniere’s attack hanging over my head? I couldn’t stop doing living my life because I have a wife and son that needed me but I worried that I was going to be more of a burden than any help to them. It was a bad time with all the attacks at work and at home, not to mention the ambulance rides. But over time I have realized that while you can’t control when and where you are going to have an attack, you can control your way of looking at things.



I think that the main thing that changed the way I look at things regarding Meniere’s was starting this blog. I have read quite a bit about Meniere’s over the past 2 years and learned a lot about how people try to cope with this disorder. While Meniere’s doesn’t get much if any publicity there are a lot of folks out there who suffer with it just like us. Something else that I learned early on was that some things work for some folks might not work for others. Low salt diets, gent injections, surgeries and medications are just some of things that help.

But most of all the comments that I receive help me more than anything to continue to cope with Meniere’s disease and I certainly appreciate all the feedback that I receive. So keep those comments coming.



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Tubes in your ears and Meniere’s disease

With all the trouble that I had with my ears while I was growing up the idea of having tubes put in my ears was never considered. I’m not sure but when I was a kid (a long time ago) I don’t think that was done as much as it is today. And with all the ENTs that I have seen since I was diagnosed with Meniere’s disease no one ever mentioned putting tubes in my ear as a remedy for this disorder. But apparently it is used for Meniere’s disease. I received an email from a facebook friend who happens to have Meniere’s and she has had the procedure done.


Here is an excerpt from Lita’s email…



I am in my 4th year of Meniere's and have experienced all the same frustrations as most patients with the roller coaster of symptoms and their severity. Back in Sept. 2010 I started having another period of vertigo (attacks come in clusters for me). The symptoms differed a little this time so I called the ENT. While there I had my usual checklist of questions/concerns. I casually asked about getting tubes in my ears and my dr. asked me if I'd like to try it (just one ear). He said it's a very easy, non-invasive procedure. I signed a form and within 5 minutes had a tube. (It's not a surgery like it is for children.) I have found relief with the ear tube. My tinnitus still exists, but I have had no vertigo and very few symptoms since the tube was placed. One of my really big frustrations about this is that it took me asking about tubes for him to even offer. If it's so non-invasive, why wasn't I asked from the beginning if I'd like to try it? I have no medical background or knowledge, I'm just like everyone else who scours the internet trying to find answers. Don't get me wrong, this is my 4th doctor and I really like this guy. He used to work with the doctor at the University of Washingon who is now performing the implants (Rubenstein? - I have forgotten his name) to improve balance. Anyway, I just wanted to pass along that I tried tubes and have, for now (knock on wood) found some relief.




Thanks Lita for providing me with this information it is really interesting

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Be careful traveling in bad weather

For the past three days in the Atlanta area we have had some of the worse winter weather we have ever had. Most winters we don't even have one snow fall but in the course of 3 weeks we have 2 winter storms. The one that started last Sunday dropped 6 to 7 inches of snow on the Atlanta Metro area. I am from Pennsylvania so I know that 7 inches of snow isn't much up north but down here it causes massive problems. We didn't get out of the house for a couple of days because the driving is too treacherous (even if you don't have Meniere’s disease) and where ever you walk would be covered in ice. I stepped out of the house and almost took a spill it definitely reminded me to be careful in this type of weather.



As I have written in the past falling is a great fear of mine. I have had a few drop attacks and have been lucky to have been at home when they happened. With winter weather that is mostly ice driving a car is certainly out of the question for me and even walking outside isn't a great idea either.

So if your winter is bad this year please be extra careful and don't take any chances on the road!

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Disorders that are similiar to Meniere's Disease

Most of all of us don’t really know why we have Meniere’s disease. A lot of questions remain as to how you get Meniere’s disease and why. Of course the biggest question is what to do about it. Hopefully that will be resolved in a few years. Another thing that is puzzling about Meniere’s is whether you have this disorder or not. A doctor told me a long time ago that the diagnosis of Meniere’s is usually slapped on a patient with balance and dizziness problems when all other disorders have been eliminated. After a recent post about the vascular loop I thought about how there are other diseases or disorders that resemble Meniere’s disease.

  

• BPPV Vertigo - This is the first one that comes to mind because when you have Meniere’s one of your symptoms during an attack is vertigo. I was tested by a few doctors who were able to eliminate vertigo as my illness with a simple test. That is too bad because vertigo from what I have read is easier to treat. 
• Labyrinthitis - Labyrinthitis is caused by a virus that results in hearing loss and tinnitus. Some doctors believe that Meniere’s disease is also caused by virus and tinnitus is very common among Meniere’s sufferers. There can also be vertigo but not as bad as it is with Meniere’s 
• Perilymph fistula - Perilymph fistula is caused by a leakage of fluid in the inner ear. There are many causes for it and the symptoms are balance problems and dizziness 
• Mal de debarquement syndrome (MdDS) - This is really an odd and rare disorder that causes you to be unstable on your feet. The cause is relativity unknown.  
• Otosclerosis - This disorder is caused by abnormal growth of the middle ear. It is possible to have otosclerosis and Meniere’s disease at the same time 

 

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Meniere’s disease and the vascular loop

I had a comment on the blog the other day about something called vascular loop. I didn’t think that I had heard the term before, when I did some research it was something that I knew a little about but not much.


Here is part of Becky’s comment

I've had the full blown menieres symptoms (unilateral left ear) for just over a year, had various tests done, but something has been bugging me since I last saw an ENT consultant. On my last visit he told me I had an abnormal vessel pressing on my inner ear (which they had failed to tell me before!) but he wouldn't operate as its too close to the brain, and it probably wouldn't cause my symptoms anyway. However, I've done a little research, and found that its something called a vascular Loop which compresses/damages the VIII cranial nerve. I also found some studies, which are quite old (during 1990's) where menieres patients had this Loop and underwent micro-vascular-decompression and vestibular neurectomy, after-which they were vertigo free, tinnitus significantly reduced and in some even hearing improved




Becky also wrote a follow up comment which contains links with information about vascular loop. Thanks Becky, I appreciate the information!


According to Pubmed gov “a vascular loop in the internal auditory canal pressing upon the vestibular nerve was found in a series of eight patients with episodic vertigo and severe motion intolerance. All patients had failed medical and surgical therapy for vestibular Meniere's disease, which this syndrome closely mimics. A vestibular nerve resection or section medial to the vascular loop produced relief of symptoms in all patients, but one patient required a second operation. We have no test or study to reliably diagnose this syndrome preoperatively.”


The internet really has been a blessing to those of us with meniere’s disease and other health issues. Personally I would have been lost without all the research that I have done over the years about things that help with meniere’s disease and things that makes it worse. It also makes us aware of any potential cures or devices that are on the horizon.


Here are some of the links about vascular loop and vestibular neurectomy

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1656475/
http://www.dizziness-and-balance.com/disorders/unilat/microvascular.htm


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Headaches leading to Meniere’s attacks

For the past few weeks I have some intense headaches, so bad in fact that I went to the doctor. I told him that I was under a lot of stress lately and wondered if that was the cause. My blood pressure was okay so I knew it wasn't that I had written a post about headaches caused by blood pressure before. I also knew it wasn’t a sinus headache because of the location of the pain. He wasn't really sure what it was but I believe its stress. The doctor gave me a muscle relaxant to see if that would help. I have taken it for about a week but it hasn't done much good. The thing that is bothering me is that my attacks have been worse, leading me to believe that the headaches are having an adverse effect on my Meniere’s.


In the past I have written about the connection of migraines and Meniere’s disease. Migraines are more than just bad headaches and I don't believe that I have a migraine, right now. The headache I have feels like pressure is pushing down on my head rather than the throbbing pain of a migraine.

Granted it could be just all the stress that I'm under right now. I just don't know. I'll give it another week and see if the headaches go away before I go back to the doctor.

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