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Old 05-31-2009, 11:46 PM   #1
Join Date: May 2009
Location: pittsburgh
Posts: 7
mene HB User

I was wondering if anyone could help me.
About 7 years ago I began having dizzy spells. Not to the point of vomiting but just enough to make me take notice and hang on to something for support.At times the left side of my face would go numb and it felt like my left eye was cold and going to fall out, quite scarey.I was also having neck pain. My neuro gave me neurontin for the neck pain which worked for the pain but did nothing for the dizziness. He then added antivert which did not work at all. He sent me to an ear doctor who said that I had lost some low tones in my hearing and I did not do well with the voice recognition on the left side indicating nerve damage. He suggested Meniere's. After a few MRI's that were questionable for a small aneurysm over a period of months the Neuro decided to treat me for Meniere's. I started lasix and stopped caffeine and limit salt intake. That helped so much that I was able to stop the neurontin and was doing pretty well. I seem to retain alot of fluid which causes the neck pain as well as the ear symptoms.If I get too much salt I get a heaviness in my leg and can feel the pressure in my spine between the vertebrae. I have only had one instance of severe dizziness and vomiting but I caused it by eating fritos, I was feeling good and decided to see what I could get away with. Not a good idea!
At the age of 37 I stopped having periods and was diagnosed in menapause. I have also had problems with painful intercourse, vaginal dryness to the point of tearing and low libido.
Sometimes when I have a bowel movement I get a banging in my head that pulsates with my heart beat for a few seconds, very painful and scarey and often leaves me with a headache afterward. This also happens sometimes when I bend over.
If I get up too fast I sometimes get the feeling that I am going to pass out and while that is happening I lose my hearing almost completely. It passes quickly but is quite scarey and very embarassing if I am in public. One day I was typing on my computer and for no reason I lost all hearing completely for about a minute. That scared me alot.
I had another MRA MRI done a few months ago and the Neuro said it looked good. I have always had headaches but the past year they have become worse and have started to come on suddenly and are severe leaving me weak the next day. The neuro gave me a medication for migraines which contains caffeine which will aggrivate the Meniere's so I will have to be in super severe pain to go that route. Sometimes I think my Neuro is just as confused as I am as the MRI's really don't show anything. I have had 6 or more over the years.
I went for a routine eye exam two weeks ago and they found the optic nerve to be enlarged and my pressure was elevated. They want to do a visual field study.I have eye pain on the left side and a feeling of pressure in my eyes more on the left, this comes and goes. The doctor who examined me this week said that my pressure was good but the left eye is wandering to the left a bit and this may be due to the Meniere's. I don't notice the eye being off center at all, so I hoope no one else notices it either.
While I was in the eye doctor's office I was looking at a chart that showed the pituitary gland in relation to the eye. I was curious about what it was and looked it up only to find that I have most of the symptoms of a pituitary tumor. Of course if you look up anything you will most likely have some of the symptoms. I am wondering if I should tell the doctor all of this when I go for the visual field study or just wait until the tests come back to see what they think. I don't want him to think that I am crazy although the Meniere's alone can make you wonder if you are.
Patterns on rugs or clothing can make me nautious if I am having a bad day. Florescent lights make me dizzy. A trip to Walmart can be a nightmare between the lights, the humming of the generators and the scanners beeping I usually leave there feeling awful.
I just had an MRI MRA in January. My question is could a tumor have been missed on the MRI? Six times? Is it possible for one to be too small to show up but cause all this trouble?
I read that some tumors can make you retain fluid and I have always felt that the Meniere's is just a symptom I am getting from the fluid retention. Not everything I experience fits with Meniere's but alot does.I have to be so careful what I eat and cannot drink carbonated soda, eat potato chips, drink a beer, enjoy fast food or I swell. I wake up feeling awful, heaviness in leg, one eye lid swollen,my hands and feet slightly swollen,neck pain and dizziness. I take the lasix and in a few hours I feel much better.
I am so confused and a little scared but after reading about the pituitary tumor it would seem to all make sense. Like all the pieces of the puzzle fit. Of course I didnt think to tell the Neuro about the gyne problems and the gyne was confused about the early onset of menapause but didnt question it further as I never mentioned the Meniere's to him because the Neuro said that he was treating it as Meniere's but never gave me a diagnosis because he wasn't sure what the lesion was that he was watching on the MRI (possible very small aneurysm or not). He said that the last MRI looked good so we could put the aneurysm thing to bed.
That was a relief but now with the eye thing I am wondering what now?
Any input would be appreciated.It sometimes feels like no one truly understands what I am going through and I don't "look sick" so I sometimes feel like I shouldn't talk about it, even to the doctors because the symptoms don't match up completley to anything and I end up feeling like a fool.

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Old 06-01-2009, 10:36 AM   #2
Join Date: Feb 2009
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Re: Help

I'm sorry you are having so many problems. It would be nice to figure out what is causing what or it all of it is part of one disorder. To give you one answer, yes, a pituitary tumor can e so small it doesn't show up on any test. I had one of 16-20 CELLS. They can be that small. It was treated with medication that made it shrink to nothing.

I would suggest getting a referral from your eye doc to see a's a doc trained in neurology that they does a fellowship in ophthalmology on top of it. They are rare. Only 300 in the whole country. But they are often the doc of last resort when you have such an array of neurological and eye problems and are experts in trying to figure out what is causing what. My first appointment last over 3 they are thorough. I'm still getting tests after almost a year but he figured out what most of it was.

Look into it...might be just what you need.

good luck............Jenny

Old 06-01-2009, 04:29 PM   #3
Join Date: May 2009
Location: pittsburgh
Posts: 7
mene HB User
Re: Help

Thank you Jenny! Do you know if any of those doctors are in the Pittsburgh or Ohio area?

Old 06-01-2009, 04:30 PM   #4
Join Date: May 2009
Location: pittsburgh
Posts: 7
mene HB User
Re: Help

Did you ahve any symptoms similar to mine?

Old 06-18-2009, 09:38 PM   #5
Join Date: Jun 2009
Location: Jacksonville Fl
Posts: 9
NoNoNuNu HB User
Re: Help

They found my pit tumor 6 years ago and by the size it had already been there for quite a while.
Yes they can cause vision problems but it would have to rather large tumor to be pressing on your optic nerve so I would think they would have seen it. They did a blood test on me and knew I had one before my MRI was even done.
Now as far as your issues... I can not say I have any of those... granted I have a ton of things because of mine. They can mess with you mental wise, which some dr's are now saying they almost give the effect of being bi-polar, and really bad anexity and panic attacks... both the tumor and meds for it kill your sinisues... hell I could go on and on about my problems but sadly now fit yours. I am hoping for your sake it is a pit tumor because with meds you can live a almost normal life so I would rather it be something simple like that instead of something more serious.

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