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8411000 tn?1464560311

Looking For Suggestions

Back in 2000 I started experiencing dizzy spells, head heaviness, trouble finding words, and fatigue. I had seen a few doctors without finding anything wrong. Two years ago I experienced my first vertigo attack. Since then the attacks have become more frequent and more severe. The last six months I have been experiencing vertigo, dizzy spells, ear fullness, hearing loss in one ear with more tinnitus, memory problems, headaches, fatigue, balance issues, and trouble finding words. I have seen two different ENTs, two audiologists, and a neurologist with whom they all say that I'm "special" and a "mystery". I've had a general CT scan, MRI, MRA, and a high resolution CT of temporal bone that all come back negative. The neurologist put me on verapamil and lose dose aspirin, hoping that I have vestibular migraines. Nothing has helped with my symptoms.  I'm tired of not feeling like myself and am looking for any suggestions or advice. I don't know which direction to go from here. I've been kicking around the idea of going to somewhere such as a Mayo Clinic to try and figure this out. Any suggestions would be greatly appreciated.
14 Responses
8411000 tn?1464560311
I also have had some eye disturbances such as seeing stars, seeing "heat waves" when there are none, and trouble focusing. The vision in my eye went very blurry for a day right after my first vertigo attack. Some noises, whether it be volume or certain pitches, seem to cause my eyes to move. Almost as if something is moving in my head. Like an echo. It's so hard to explain what it is actually like.
987762 tn?1331031553
COMMUNITY LEADER
Hi and welcome,

I was hoping someone would get back to you with some good advice on which direction to go but the forum is often quiet on the weekends and with the Easter break, it's just caused the forum to be a lot quieter than it normally is, so hang in there.

The only advice i've got is to get a second opinion with a neurologist that specialises in Migraine, because that's what the neurologist was leaning towards but I can't say if Mayo is the right place or not because i'm in Australia, it might be a good idea to post your question with the migraine community and see if they can help you more with who or where is the best diagnostic place to go.

Cheers.....JJ  
8411000 tn?1464560311
Thanks! I'm looking at getting a second opinion. Just wish there was a quick and easy answer. I don't live in a highly populated area and sometimes it seems tough finding the right doctor. Guess I'll be traveling further from home in the near future to find a doctor for a second opinion. In the MRI from 2000 a mass was noticed that was considered a possible glomus jugulare. My recent MRI showed the same thing but was considered a high riding jugular bulb by 2 different radiologists. My neurologist wasn't convinced and ordered a MRA. He couldn't see it in the MRA and still thinks it is a benign mass. He seemed very concerned about it, but he didn't say anything about it during my last appointment until I brought it up. The funny thing is that I have hearing loss in my left ear and the mass is on the right side. Haven't been able to find the reason why my hearing on the left side is progressively getting worse. Thanks again! I highly value any input.
1831849 tn?1383231992
Hi CR -

Neurology symptoms can be difficult to sort out. MS symptoms can also be caused by migraines and high riding jugular bulbs (I looked it up!) Finding the right doc to help you sort through things is very important.

If you think you current neuro is moving in the right direction, then stick with him. If you don't have great faith in him then look for a new one.

Kyle
8411000 tn?1464560311
Thanks Kyle. Maybe I'm not patient enough. I was hoping to have more of an idea on where to go by now. I wasn't entirely happy with one ENT and sought out another opinion. The second didn't have much to say. Ordered a different CT but when it came back negative he said to come back in 6 months. The neurologist seemed like he was going to get to the bottom of things but he has stalled out too and has seemed to contradict himself some. I suppose it may be time to search out another one. Thanks again!

Cody
Avatar universal
I thought the left side of brain control the right  side of your body and vice versa. So your pain and mass are opposite sides.  Just my 2 cents.
8411000 tn?1464560311
Thanks. Time for an update. I had been getting 16 to 18 weeks in between vertigo attacks but just had one and it's only been 5 days. I noticed it a 12:30 am and took .5 mg Lazipram and 25 mg Meclizine and went back to bed. Woke up at 6:15 to get ready for a day of training for my job. After breakfast I took another .5 mg Lazipram and 25 mg Meclizine. Went to class to tough it out and took another .5 mg Lazipram and 25 mg Meclizine at 9:30. By 10:30 my boss was helping me walk out of class and took me to the hotel. I was extremely nauseous and couldn't walk on my own. My right hand and arm was trembling for a good 30 minutes before I fell asleep. It is currently 4:50 and I'm still in bed. The vertigo is better but I'm still not good enough to stand up and move around much. It use to only last 12 hours but I'm past that now. Two years ago when the attacks started, I went almost a year between my first and second attack. Then it shortened to every other month. I hope this last one, only 5 days from the previous one, is a fluke and not my new normal. It's been a rough go. I've only missed 4 days of work due to illness in the last 17 years but the last 2 days have only been a month apart. Hope to figure out soon as I can't afford not to work.
1831849 tn?1383231992
Hi CR -

It stinks that you went through this in a hotel.

I couldn't find any info on Lazipram. Are you referring to Alprazolam? Have you been back to the neurologist following this latest episode?

Kyle
8411000 tn?1464560311
Sorry. It was lorazepam. I called my neurologist as I'll be away for another week and a half. He wants to send me to Denver Ear Associates before I see him again. I hope they'll find something. I'm bordering the fence about finding a new neurologist. I've been to 2 different ENTs that couldn't find an answer and referred me to a neuro. Gets frustrating trying to find the right doctor.
8411000 tn?1464560311
Also, my first ENT ordered a Lyme Disease test that was negative. The second ENT said I should ask my neuro about a puncture test. The neuro doesn't want to do the puncture. He says he is absolutely sure that I shouldn't worry about MS. I hope he is right but I would think some more testing may help to eventually get to a diagnosis.
Avatar universal
I've heard it's hard to diagnose Lyme through conventional test. You should consider using a private lab like Igenex. They'll tell you your problem but it's gonna cost ya. I'm on a budget, and can't wait until I save enough to be tested through them. I bet you have Lyme though. Myself too.
8411000 tn?1464560311
Thanks Tee. I wish it was easier to figure this stuff out. I'm heading out of state next month for a second neuro opinion and visiting with another ENT. Maybe I'll get some insight there. Good luck.
Avatar universal
Hi-

Has any mentioned Menieres Disease to you? It sounds as though you have many of the symptoms. I would suggest seeing an oto neurologist to discuss your symptoms with.

I'm so sorry you are going through all this and know how frustrating it is not to get answers.

I wish you the best of luck!

Hazel
8411000 tn?1464560311
Thanks Hazel. One ENT mentioned it but didn't want to go that route until he exhausted other possibilities. But then he told me he would see me in 6 months. That's not the pace I was wanting to go. Hopefully next month will be more fruitful. My neurologist is referring me to an ear specialist also. Now I just need to make the 6 hour drive.
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