Please Help!

I have been suffering for months now, no doctors can seem to find anything wrong, endless Mri's, scans tests...NOTHING! I am having terrible dizziness, I feel like I am losing my eyesight slowly but surely, and still doctors just do not know what to do or how to treat it, they say it could be meniers, but one test came back from the ENT negative, which i find impossible! Also starting to get headaches too now...I'm losing my mind I'm afraid! :-\ :'(

 

Hi Dizzy Chick;

Please try to stay calm. For most people stress makes the dizziness worse.

Why do you think you are lossing your eye sight? When you say that a test came back negative do you mean it was normal or not normal? What test was it?

Gwen

 

Hi Gwen!

Wow, thank you so much for the quick response, I was feeling like I was completely alone in this. I have severe blurred vision, all the time, every once in awhile it will clear up, but then goes right back the way it was, blurry.

The ENT doctor did a test where they put silly goggles on you and blow hot and cold air in your ears, I do not remember what the test what called...another slight symptom...my memory, yikes!

 

write it all down. If you must dictate while another person transcribes then do so. List every symptom and symptom cycles and severity. Use a 1-10 scale for that. List every test and outcome of each test. List what every doc has said. list even trivial things. THis is a lot of work. Get someone to help you do this. WHere do you live? Maybe someone on the forum is close. You are worth this effort. Best wishes for some REAL answers.
Paul

 

Thanks gardenfish!

This is definately a active message board, I'm very impressed! I'm at my wits end, and hopefully all this posting will keep my spirits up. I Live in Los Angeles[flash=200,200][/flash]

 

Hi Dizzychick,

No, you are not alone. You've got a lot of company here.

As one of the secondary symptoms of my ear problems, I've developed something called oscillopsia. It is a result of an imbalance in my visual-occular response system. My eye muscles are getting erroneous signals to move about, instead of being calmy focussed on one spot. It causes very small eye motion and gives rise to a slight blurring of objects.

You have every right be to concerned about your vision. Your doctors should be able to tell you whether the problem is caused by the refractory part of your eye (cornea and lens), the retina/nerve end, the visual procesing portion of brain, or the ear.

Welcome to forum.

Joe

 

Your not alone :-*

Many of us found our way to this site because we were scared and no one had any answers for us. I'm not a doctor but if your MRI was OK then your vision and memory probles are most likely the result of an inner ear problem. There are many things that can cause dizziness and they all need to be ruled out first. Menieres is a diagnosis of exclusion. Here is a good website which explains all the tests.

http://www.menieresinfo.com/diagnosis.html

I'm glad you found us. You will get lots of support and information here.

Gwen

 

Hi Dizzychick, has the doc said you should see an opthamologist, or eye surgeon? An optometrist would be a good start too, but menieres as I have read does not affect vision, but of course I'm not a doc. I know that vision problems and dizziness together can be an indication (I was told) of a certain type of migraine headache that causes dizziness. I looked this up on the web and was shocked that all the symptoms were the same as menieres, caused by migraines. Of course I am not saying that is what you have, but it is a question to ask. And a better problem to have than menieres. I wish I could remember the name of the migraine but I found it after a quick search before. When I read your post again I don't believe that losing eyesight is part of the migrain pattern (again, not sure), but I would get to an eye doc fast. Regardless of what is causing the eye problems they should have a good idea of where to lead you, and also if any quick steps are required to stabalize the eyesight. I had a weird eye problem once that if not treated would have led to big sight problems, and my doc told me if your eyesight is ever strange for 3or more days, you should get in right away. Just a suggestion. Good luck, Lisa

 

Dizzychick you are right about this site. We have some really great people here. Welcome! You are never alone here. Keep posting and asking questions. TracyinIndy puts out a great post that was lost when spring cleaning came. She suggests keeping a journal of your symptoms, what you eat, what triggers your problems and such. I use to find it, copy and post it. Wish I'd put it on my computer cause it was great. Anyway that is another way to keep up with what's going on with you.

Good luck and Big Hugs to you.

 

Dizziechick,

I sent you a pm, but I wondered if they checked your pituitary gland, where are your headaches located? Your eyesight along with the dizziness and headaches, wonder if they looked at this gland?

 

I was sent to a neuroopthamolgist when my symptoms first started and I had the constant blurred vision for months on end. They are much more highly trained than a regular opthamologist and can give you a real good workup on your eyes. Also may want to see a neurotologist to get a better workup if a vestibular disorder is suspected. I have been under going the diagnosis process for years and have seen a range of doctors myself. Migraines can also give you persistent visual problems and headaches, some people do have them on almost a daily basis. Just some other things to consider. But you really should get your eyes checked by someone highly qualified. Welcome to the site.

 

dizzychick,

Welcome to the forum. I agree you need to see an opthamologist. A number of members here have been to the House Ear Clinic in Los Angeles and most had a positive experience. You might try to get a referal there.

Also, there is a related disease called Migraine Associated Vertigo (MAV).

Start a symptom journal.

Record:
When you eat
What you eat
What meds you take
When you take the meds
Your MM symptoms and changes thru the day (times)
Stress levels
Menstruation

Food allergies are a fairly common trigger for MM especially gluten (wheat & other grains) and dairy. If your symptoms usually get worse after eating the same type of meal then you can try eliminating that food from your diet. If you eliminate an allergen it should give you some relief with in a week or two at the most.

Common triggers:
Sodium
MSG
Stress
Fatigue
Wheat
Dairy

Less common but reported triggers:
Nicotine
Seasonal allergies
Hormones
Alcohol
Caffeine
Other inhalant allergies
Other food allergies
Weather

Good luck, Tracy

Carol check you PM box, I will PM you a copy of the list! Save it off to the hard drive then you won't have to search for it.

 

Fantastic! Thank You so much, everyone here has been so helpful! I can't wait to check the board all the time now!

My symptoms:

Severe spinning, all the time, especially when i turn my head from one side to another, or in the shower, I've actually fell a few times just from putting my head back, very unbalanced, sometimes headaches, but not too many, ringing or high pitched frequency sound in my ears, seems like it is more on my left side, severe ear pain if I sleep on my ear wrong (that one is strange!) very shaky, my hands are very unsteady.

My Meds:
Diazapam (Valium)
Vicodin

other meds tried:
prednisone
motion sickness patch

 

Just wanted to welcome you to the forum dizziechick You will get lots of advice and the best support ever in here, plus you can have some fun as well ;D

You have already gotten some good advice, probably enough to keep you busy researching for a while but another thing to look up is BPPV.....I don't have the link for you as I am not too good with these puter thingys : but I am sure someone will be along with it soon

Anyway wlecome ;D

Maggie

 

The vertigo attacks you may be describing with head movement are of a special variety called BPPV. There are several articles listed in the "database' that you may want to read too. BPPV is suppose to be very common with MAV. I had that type of vertigo for the longest time and was actually helped by a chiropractor. Others have found relief through physical therapy.

 

sounds a little like BPPV to me.

Did the ENT doctor do a test where he put you in a sitting position, and then whilst holding your head, layed you down really fast whilst tilting your head to the side?

 

I can't add much more than what has already been said, but I wanted to say hello and welcome you!

 

hmmmm.
http://www.tchain.com/otoneurology/disorders/bppv/bppv.html

 

My suggestion is that you gather all your records and go to a neurologist at a teaching hospital or major medical center. Everyone here has the best intentions but you need a professional to determine the cause of your symptoms.

 

It's good that you found this forum. You will find a lot of information here, but most importantly you will always find someone willing to listen to you without judging you. Remember that most of us have had terrible bouts with this beast called Meniere's. Although we are all different, we have many of the same symptoms. I hope you find a doctor who can help you soon.
Leon