I went to a doctor that I haven’t seen before about my meniere’s. This appointment was set up for me by the long term insurance company from my previous employer. I guess they wanted another opinion about my meniere’s disease. Any way the visit went pretty good. They gave me a hearing test and the results didn’t surprise me, I was almost deaf in my meniere’s ear (left ear). The doctor was really nice but I don’t think that he will be able to tell the insurance company anything conclusive. In order for him to say that my meniere’s disease is active he would have to see me in the middle of an attack.
Earlier this year another doctor said the same thing to me, that I should call him while I am having an attack and then make arrangements to see him immediately. Of course this is ridiculous because when I am having an attack I can’t even set up let alone attempt to make a phone call. And even if I did how would I get to the doctor’s office? The doctor’s office is about 45 minutes away and I certainly can’t drive and my wife works so she can’t take me. I don’t have anyone else that can drop what they are doing and take me to the doctor’s office. Another thing is that my attacks don’t always happen during office hours.
As you all know this meniere’s stuff brings on a lot of frustration!
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17 comments:
David-
If insurance covers it, I would (carry a cell and) call an ambulance. An EMT might be able to treat you on site, and give you documentation you need. Bummer of a day to spend in the ER, but they usually prescribe you good stuff to recover from attacks quickly. I was also wondering where you were in the SSD appeal process. I had applied before the military awarded me 100% disability and was denied. I'm wondering if they would consider me eligible now? I certainly can't work so I wouldn't be allowed unemployment. What a catch 22, to have this 'silent disease'.
Hi Crimson56,
Right now I am in the appeal stage of SSD. It will probably take quite awhile before I go to a hearing. I think that it is always best to find an experienced lawyer to help you through all this.
You are definitely right about all this being a catch 22, Meniere's is tough to deal with on many levels.
good luck and stay in touch
David
David, would they accept a statement from someone who isn't a doctor but has seen you having an attack? I could bring my entire family and two of my personal friends to do this, but perhaps they wouldn't believe a friend or relative.
I find it impossible to believe that any doctor would provide all the treatment you have had if you didn't really have the disease. I'm sitting here shaking my head over the stupidity of it.
It is really frustrating. We have just applied for a home equity line to make needed repairs to our house so we can put it on the market and downsize. Of course, because buyers are so picky now, we need to have the house in excellent condition to sell it, and that means spending money, which also means going into debt.
And we are in all this trouble because of Meniere's Disease, which is so difficult to prove.
What really kills me is that SSD is OUR money! We aren't asking for charity -- we are simply asking for the money we have been paying into the system for years and years. It makes me furious.
David~
I so relate to your frustration!
The last attack I had hit when I was sleeping so I had no time to get meds in before extreme vomiting set in. This was a very bad attack. My elderly parents came over at 2am to try and help.
They decided to call 911 as they could not get me up off the bathroom floor & down the stairs and to the ER on their own.
The paramedics who arrived seemed unfamiliar with Menieres, and assumed I was drunk.
My Mom was so disgusted with them and their attitude that she lit into them.
One of them finally figured out that there was NO smell of alcohol, and they took me in.
(funny thing is..I don't even drink alcohol!)
Riding in the ambulance was a nightmare, cause as we all know, any movement during an attack is horrible to deal with.
They did know what to do at the ER, but you still deal with attitude.
It just shouldn't happen. It's all overwhelming.
My thoughts are with you.
I agree though...the next attack you have, call 911, and let them take you in. Having to go through being taken to the ER is awful..but at least it will give you the documentation you need, and at the ER they can stop the attack more quickly. There is that. :)
PEGGY~ Congrats on your good news from your last Doctor visit!
It sounds like we have similar symptoms, but mine is right ear. I have had it since 1987. I also had an Endolymphatic Sac Decompression that year... it helped, but I think in many ways I regret it. I attribute what feels like inflammation or something more than the common "fullness" of Meniere's to the surgery rather than the Meniere's itself. This is also why I would never consider the Labyrinthectomy or any other solution that involves surgery. I have found that getting the heartrate up is about the best answer for me. Ativan is far and away the best medication for me. I think the most difficult part is, as was mentioned in a previous comment, is that this is a "silent" or hidden affliction. Fortunately my employer has made some accomodations for me, such as working at home sometimes. This helps undo the anxiety that a full week can cause. I mean this in the sense that a great deal of my work is analytical and deadline oriented and at the same time client-based. Solitude is often quite a relief to always being "on point" trying to pick conversations out of the air, being attentive and working at giving off a relaxed, approachable demeanor. I'm also grateful to my friends, many of which have consciously adapted to my hearing issues and make it a little easier for me. Small things like getting the right seat at a noisy restaurant can make all the difference.
I keep trying to post this same thing and it never shows up. David, I think the doctor should COME TO YOUR HOUSE DURING AN ATTACK!! LOL! That's the easiest solution don't you think?
David~
I know this sounds weird, but it came to mind after reading some posts.
Have you ever thought of keeping a video camera set up at your house?
If your wife is home she could video the attack, and if she isn't..keep it set up and ready, and if you can hit an "on" switch before the attack is too intense, then it could tape you.
Although all we really want to do when the vertigo hits is lay down and try not to get sick, I think even a shot of you trying to get down a hallway or to the bathroom would show plenty. Not to mention that even in a person laying down, elements of the attack are obvious, and a shot of someone's eyes, and/or them trying to speak during vertigo should show up as well I would think.
Be sure the vid has sound & shows date and time. (like a NannyCam, only in our case..a VertigoCam.)
I'm considering it myself.
I think the sentence "Solitude is often quite a relief to always being 'on point' trying to pick conversations out of the air, being attentive and working at giving off a relaxed, approachable demeanor," is a VERY accurate portrayal of what is so exhausting about trying to work when you have Meniere's.
Most people with normal vestibular function can't really imagine how tiring it is to do things that are so easy for them. There's a constant vigilance and the need to compensate almost continuously for lack of good hearing and lack of reliable balance/stability that wears me out.
How do others feel about that? Similar experiences?
Great idea. Even a cell phone could do this, I think. Most of them will do not just photography but videography now. I wonder how much a doctor would require to be certain it's Meniere's?
The video sounds like a good idea but unfortunately I don't think that the doctor's would go for it
thanks anyway!
David
I had a HORRIBLE ENT tell me to come to his office so he could see me have an episode. I was baffled. IF i could get someone to drive me to his office during office hours, all he would see would be me getting sick all over his floor.
I've also had another Dr. tell me it was stress. Thank God for the specialist i have now. I had the sac surgery in March and everything was perfect for a couple of months until i had to have half of my thyroid removed. That surgery messed me up. We both think it was because of all the extra fluid they pumped in me and extra stress on my body. Im back on diuretics and valium sometimes, but so far, no dizziness. For me i think stress playes a big part in my symptoms. Have you noticed anything like that?
Thank you so much for your blog! I was beggining to feel so alone and even crazy because it seems like people (other then my family) dont understand what im going through. I think some think im a hypochodriat. Anyways...thank you for your blog!
Hi Tara,
I know exactly what you went through with certain doctors. I just can't understand how any one could make it into a doctor's office when they are having an attack.
as far as stress goes I think it is a big factor from my own personal experience and what others have told me.
thanks for the comment and stay in touch and let us know how you are doing
David
hello tara
next time you have an attack get someone to film you on your mobile, also concentrate on the eye area, i did this for my doctor.
ali
I don't want to sound like Debbie Downer...but today is one of those days when I am just fed up with this disease.
I am even more fed up with my Surgeon/Doctor. Instead of charting the return of Menieres symptoms and FULL rotational vertigo that I described to him following my Jan. surgery...he charted nonsense. I think he was determined to show that the surgery he performed was "fully successful", regardless of what was happening to me.
I would not have even been aware of this had I not asked Medical Records for chart notes from the visit. In those he stated he "felt my symptoms were somatic, probably related to depression, and that the surgery was successful. He doubted I was having full vertigo". WHAT?!
I think he got a big surprise when I pulled out the ER diagnosis from the week prior when I was taken in twice during full vertigo attacks. Normally I do not go to the ER, but these 2 attacks were really bad and not responding to Valium. My family took me.
Darn good thing I did go, and did have this documentation, it turns out.
You all might want to consider getting copies of chart notes from your Dr. visits.
I was blown away when I read mine. What we had actually discussed wasn't even represented there!
Thank the Lord that all my tests verify what I am saying, and several Doctors and Nurses saw me during attacks that were 2 days apart.
Geez! I am actually worse than before the surgery, since the right(good) ear is now acting up too.
I will have to find another Dr....I have had enough, and plan to file a complaint against him due to the reprehensible charting.
I have to wonder how many other patients he may have pulled this on?
Lauri, I was about to say you NEED a new doctor when I got to the bottom of your post and saw you are already planning that. Good girl. He sounds like a total ass and deserves the complaint. I hope you find someone great who listens and believes. There are plenty of us out here who can testify that what you're going through is NOT due to depression. Rather, the depression we all suffer is due to the bloody symptoms of Meniere's.
Grrrrrrr.......
Peggy~ Thanks for the support! :)
It was a blow to have the vertigo return after surgery, but I'm handling it.
(I just don't need a goofy Dr. on top of it.)
I'm dizzy/disequilibrium daily, with vertigo about 3x week right now.The tinnitus has been worse since the surgery.
Bummer...but at least I can still hear from my right ear. That's huge!
These days, I count anything that's going right as a huge boon! :)
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