Aa
Aa
A
A
A
Close
Avatar universal

Vision loss, dizziness, disorientation

Hello

   I'm a 21 yr old female...looking for some answers.  My case is a bit complicated and I'm seeing a neurologist, but no one has found out what is wrong with me.

  My Freshman year of college, I randomly collapsed and hit my head.  I had an MRI done and there was no concussion but it came back abnormal.  This is basically what they found:
There are scattered foci of abnormal signal intensity within the corona radiata and centrum semiovale bilaterally, which most likely ischemic.  There are also cystic changes in both cerebral hemispheres, some of which have white matter gliosis.  While these changes may be related to cysticercosis of another infectious inflammatory etiology, the dilated perivascular spaces, adjacent white matter gliosis and other peripheral white matter changes most likely are all related to ischemia.

All of my life I have been having blindness spells where I will be usually walking from a lit room or outside to a dark room and my vision will fade to black for 3-5 seconds.  I did not know this was abnormal because it has happened since I was a child.

Also, all my life I have gotten severe migraines that last anywhere from a few hours to a few days.  Sometimes I lose my side vision, and I always see zig zags, flickering lights, and I almost constantly have a disturbance in my visual field.  Its usually a shadow around an object that I know can not exist based on the lighting around it, and random spaces of lightness.  This seems to bring me on to a headache later.

I used to be very athletic and was involved in sports.  However, the past 10 years have been more difficult for me.  I often felt dizzy and disoriented after playing, and I would also temporarily go blind after a  game.  One time I was training and my vision went completely white and I felt very disoriented.  My coach said it was probably because I didn't have enough to drink/electrolytes, and I sat out the rest of the period.  

Also, I used to have nearly a photographic memory.  Anything that I read was completely committed to memory, as well as anything anyone ever said.  Nowadays, I can not remember recent events very well.  It's difficult for me to find words and sometimes I replace words with ones that rhyme or in a similar category. (like dishwasher with garbage disposer).  I also feel like I have to work a lot harder in school than I used to.  In addition, I feel like solving higher level math problems are exceedingly difficult for me, even though as a child I was considered to be gifted in all areas, especially fast math calculations.

Other odd things that have happened to me with in the past few years include the following:
Often, when I lift my hands over my head to reach for something or do my hair, my arms will suddenly hurt, feel weak, and then I feel like I'm going to pass out.

Sometimes, this is accompanied by fluttering and almost like a feeling like a bubble is in my chest.  There have been times where I could not breathe for a couple seconds.  It felt like I was choking, but from the chest.
I have always had Raynaud's phenomenon in my feet and hands.

Sometimes, its hard for me to recover from a chilly area.  I have turned blue in 70 degree weather and was shaking violently.  My fingernails also turned blue. When I was in middle school, an administrator saw me like this and demanded I go to the nurse because he thought I had a high fever, but my temperature was normal.  More recently, I turned blue and coworkers thought I wasn't getting enough oxygen but I got it tested and it was 100% saturated.

Sometimes my hands will get very red, painful and swollen.  A more scary incident happened recently where my whole ARM got very very swollen and painful, feeling like it was going to explode.  My veins were bulging and my arm turned purple.

Sometimes the slightest thing like carrying a normal sized purse will cut off circulation to my arm.

I have had a couple episodes where my arms and legs felt extremely weak all of a sudden and I had to have someone help me walk.


Medical History:
As a newborn I had pneumonia and was hospitalized for a week.  At 2yrs I cracked my skull but it healed fine, no plating was needed.  I seem to always have an ear infection and often get respiratory infections.  I was diagnosed with exercise induced asthma at age 7.  I went through puberty at an early age, getting my period at age 9.  I have had a history of irregular periods and sometimes they have stopped altogether (for 6mos, needed to go on birth control/a pill to kick start it).  They are usually very painful and heavy.

I know this is a lot of information, but I have been suffering with this a long time and want some answers...

Thank you!

3 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Thanks very much ill check that out im not certain if thats exactly what the issue with me but ill give it a check...
Helpful - 0
Avatar universal
After a long time of searching, I've finally found a neurologist that actually pointed me to a cardiologist. They did something called a tilt table test, which measures your body's reaction to changes in position. It turns out, I have something called Dysautonomia, which is a dysregulation of the autonomic nervous system. Here are a couple of good resources:

www.dinet.org
http://en.wikipedia.org/wiki/Dysautonomia
http://ndrf.org/

There's also a Mystery Diagnosis episode about it on YouTube:
http://www.youtube.com/watch?v=NN3PB6N6oGY

I've been put on Beta Blockers to control my heart rate, and I drink water with salt, sugar, and potassium mixed in. This has helped me TREMENDOUSLY! I am so much better than I used to be. I'm still not perfect, but the difference is amazing. I hope this helps.
Helpful - 0
Avatar universal
Im Sean and I am a 20 year old male, I just read through your post and I am suffering from the same issues in which you have.... ever since I can remember I have been getting blackouts where my vision all of a sudden fades to black and fizzles back in seconds later leaving me feeling disorientated and dizzy and also sometimes lapses in my memory. These episodes are not brought on by anything in particular and can occur at any time, although I am photosensitive as bright flashes from cameras make my vision fade and disorientate me. I have not found a conclusion to what is actually the problem or source of my problem yet. Covulsions and epilepsy does run in my family but are all childhood cases and they grew out of it with age. When I was younger I had brilliant memory could know something off by heart within seconds of reading it, nowadays my short term memory is getting worse sometimes even forgetting conversations seconds ago or what happened over the last day. I know that when i was younger balls of colour would fill my vision instead of getting the blackouts but as I got older they got worse. I do also get some minor twitches aswell that would make me spasm for just a second. Sometimes I can go a good period of time without getting any of these episodes but then other times I can get a load over a week or two.
I would love to hear if you got any answers on this as I would love some information aswell
Helpful - 0
Have an Answer?

You are reading content posted in the Epilepsy Community

Top Neurology Answerers
1780921 tn?1499301793
Queen Creek, AZ
Avatar universal
Minneapolis, MN
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease