Avatar universal

undiagnosed dizziness...

I am 21 year old female college student, I have been dealing with these health issues since November 2013. I used to lead a healthy lifestyle, doing great in school, had a job, and participated in school organizations. Also, I was able to exercise everyday and was in the best shape of my life and ate extremely healthy no bread, lots of veggies and grilled chicken. Happier as ever.

Then one day after exercising i began to feel this nauseated off feeling that made me feel as though im not stable. I have never fallen over or fainted (except once when i got my blood drawn to check for this problem). Then gradually over time dizziness is what i began feeling not the room spinning but i feel like i am moving when im not, i feel like i have to second guess where i walk and concentrating on the computer or driving long distances is a challenge. Then started these headaches since April 2014 where i feeling like my head is shaking and pulsing inside. This pulsing and pressure worsens when I am lying down and it takes a while for me to adjust from lying down to standing up i feel woozy when i do. Anyway I have had this constantly everyday. At first it got me really emotional but I have been practicing yoga/mediation everyday as well as acupuncture and massage therapy to help manage the stress and anxiety i was having about the dizziness/head pressure.

Heres the many doctors I have seen:
blood work - all normal according my GP; blood pressure, b12, thyroid is normal

eyes (i wear contacts) - optometrist, opthamologist, neuro-opthamologist - all normal; no elevated optic nerve pressure; prescription is the same

ears - saw two ENTS, had vestibular testing done - nothing wrong

finally got an MRI - it showed i have a cavum velum interpositum cyst (3x3.7cm in sagittal views (side), 3.2x4cm axial view); i was most likely born with this - it is hard to say if has grown or always been this size and might be an incidental finding - hard for doctors to say which makes it super frustrating
**NO HYDROCEPHELUS, hemorrhage, midline shift, extra axial collection, or acute intracranial mass effect

i have seen about 3 neurosurgeons all with different opinions
- first was an adult surgeon at the cleveland clinic - said my cyst is very rare; suggest a shunt (but would not want this due to the risky foreign object nature of the device, i would rather an endoscopic procedure)
- second saw a pediatric neurosurgeon; put me on diamox 250 mg twice a day it has been making my head feel better so the doctor is inclined to think its the cyst  
- third pediatric neurosurgeon at University of miami; was not convinced the cyst is causing my problems said it was probably incidental and wants me to wait 3-6 months to get another MRI

HELP? is anyone going through this.. im trying to stay as optimistic as possible. i just hope i do not have to feel like this forever i had to take the semester off of my senior year of college because i wanted to get to the bottom of these  problems that have affected my whole life. just want to be normal again.

This discussion is related to Chronic off balance sensation/dizziness.
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Avatar universal
Hi everyone,

I am a 26 year old physically healthy female who has experienced the same symptoms listed above for about 7 years now. After seeing various specialists and doing extensive research, I have only recently found a solution (and cure) to my chronic dizziness. I'm seeking out forums that I may have come across previously in hopes to help some of you, my fellow sufferers, as I fully understand how debilitating constant dizziness can be.

List of the specialists I saw and remained undiagnosed: Primary Care, ENT, Audiologist, Neurologist, Chiropractor, Physical Therapist, and finally... my Optometrist.

Why did I go to an Optometrist for dizziness? As I said, after extensive research (7+ years!) I found myself continuously going back to the possibility of Vertical Heterophoria, a condition of the eyes where they are misaligned in such a way that it causes you to see double, and when your eyes can't compensate, it very often resuts in looming dizziness. Many Optometrists know about the condition but few test for it (and I still don't understand why - I think it’s the time and extra equipment).

A simple Google search of “Vertical Heterophoria” can reveal you all you need to know about the condition - and I’m telling you, if you’re still undiagnosed after seeing what seems every type of specialist, this is likely your issue.

After deciding that this was my final option, that there was no possible way I had any other condition after seeing so many docs, I made an appointment with one of the only Optometrists in the U.S. who tests for and properly treats VH. Believe it or not, I was diagnosed the condition, and prescribed prism lenses which have 100% cured my dizziness. It went away within an hour of wearing the new lenses. The doctor I saw was Dr. Debbie Feinberg at Vision Specialists of Michigan. They see patients for this condition from all over the world. They are trying desperately to spread the word about VH to other Optometrists to make treatment easier for sufferers. You can check out their website here: http://vsofm.com/.

And no - I don’t work for them :) I’m just so happy to be cured of my dizziness, and that all I needed was a simple prescription change in my eyeglasses. I'm here because if that’s all you need to cure your dizziness, then I am happy to help! Please do reach out if you have any questions or want to discuss further.
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Avatar universal
Thank you very much for your response Foggy2.

Yes, I am going to continue to be optimistic and continue on focusing on doing as much as I can to be healthy.

I am not going back to school this semester I took the semester off to be at home, which I feel is the best decision in my situation.
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10389859 tn?1409921868
I'm very sorry to hear of everything you have been through for such a young age.  You sound like a strong person and it shows by having everything organized in your post.

Since you have gotten 3 opinions, one of which you have ruled out, that leaves 2: taking the medication or waiting several months to repeat the MRI.  If the medication is helping you, as you stated, why not continue with it, then repeat the MRI. Of course you will not know if it is a cyst until the MRI is repeated, but if the medication makes you more comfortable and this helps you avoid surgery for now so you can finish the school year, this may help reduce some of the stress you are feeling.  Remember, this is your choice and your life.  If you do schedule the MRI, perhaps you can do it during a school break.

Please let me know if I can assist you further.

I am going to have your thread moved to the Neurology forum,where it is more appropriate there.
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