It is very difficult to localize your symptoms. The dizzy spells that you are having are intermittent, and could be secondary to the abnormality found on the VNG. It is unclear what is causing your visual symptoms. Your work-up has been very thorough and negative. This is encouraging, however, I can understand that you still want an answer. My only suggestion to you is to have a second opinion at a large academic center. Starting with a neuro-ophthalmologist would be reasonable. Sorry I coul dnot provide more help. Good luck.
Hi, I am experiencing some of your symptoms as well. In the short term my symptoms began in March 2003 with rt. head pain, and imbalance. After a 1/2 day at a Vestibular/Balance Testing Center, a brain MRI, a CT scan, ANA testing, CBC, EEG and thyroid test - the only "plans" I am working on are: Cawthorne exercises to help my brain and eyes work together again and I am wearing a custom made mouthpiece at night and as much as possible in the daytime to prevent clenching.
I am a 42 y/o female who is beginning to experience (for the 1st time ever!) irregular menses and I wonder if any of my symptoms are hormone related?
I still have some visual problems with driving and in the grocery store. I have a similar complaint with the eye/brain connection when looking at items. It is hard to describe but I feel like I have to concentrate when choosing an item. I have the most success when I go with a short list of items that I can find quickly and easily. I have been the anxiety/panic route based on a line of thinking by a neurologist that I no longer see and I know myself and I know that I am NOT anxious or nervous about shopping. I just feel strange - visually and this is so hard to get anyone to understand. I also feel the same way when looking at sharp color contrasts (small checks - like the seersucker jacket you mentioned) Patterned carpets, fluorescent lights, etc...
The doc who conducted the testing at the balance center seemed to understand my problem. She asked if I am uncomfortable on a stationary bike or treadmill. My answer was YES! She explained that my eye/brain connection is confused because when riding a bike or walking my eyes expect to see movement to the left and right and this does not happen when on a machine. I found this fascinating. She went on to say that I am probably more comfortable walking in a wide open space (outside) on a cloudy day or at dusk than on a bright, sunny day (Yes, again). And she explained that this is why the fluorescent lights bother me in a grocery store, mall, etc. - Its all about the color contrast. The Cawthorne-Cooksey exercises made me dizzy in the beginning but I am not swaying during the day like I was in the summer.
A visit to a chiropractor was suggested to me by a nurse practitioner. Any experience with this?
Meds: I take 2-4 Motrin a day and occasionally a muscle relaxant at bedtime.
Let me know how you are doing!
Thanks so much for your comments. I haven't really looked into the ear/vestibular system as much as I probably should have. I keep going to neurologists and neuro-opthalmologists, but haven't really explored the other. Probably should. Where did you find the balance specialist you refer to? I'm in the Dallas area. What are the exercises? My neurologist last week gave me some exercises to do also, but since I haven't really bought into what he's said, I'm reluctant to try them because I'd have to do them 3-4X a day for 4 weeks to see if they work, and although I've had this almost a year, I want INSTANT results! As to the hormones, I had a hysterectomy at 40, and took estrogen for 2 years, but when all this happened, I decided to try to go off it and see if I got better, whichc I didn't, but since I had no other symptoms, I never went back on estrogen. I know what you mean on sunny days, but am not sure about the bike as I've never gotten on one. I'd be very curious to hear what you found out. I'll give you my email if you want or you can just write back here. I'll keep checking. Thanks again! Jami
SOory..one last thing.. Do the Dr.s think u r clenching ur teeth at night? Why r u wearing a mouthpiece? I asked my dentist if he thought I was grinding my teeth and he said no.. but I do catch myself during the day with my jaw in a tense position. (dont have jaw pain or TMJ).Its like I just tense the muscles and catch myself and remind myself to loosen up and relax.. SO I was wondering about ur mouth piece. Ok, I think I am done talking now. Thanks again.
The Center I went to is at the University of Virginia Hospital
in Charlottesville. The exercises are the Cawthorne-Cooksey exercises and can be found on various sites on the internet.
I have noticed a variation to these exercises but take a look
at dizziness-and-balance.com. Look under Treatment of Vertigo, then vestibular rehabilitation. Vestibular.org also has info.
I have yet to see an MD who comments on these exercises - Neurologist, my Primary Care Physician and the ENT doctor who ordered the testing. The woman who conducted the tests has a PhD in audiology and has been involved in the vestibular system for a number of years. She showed me a model of the semi-circular canals and spent a great deal of time explaining their function, how fragile and tiny they are and how easy it is for something to be amiss. She also stated an opinion that the vestibular system is grossly overlooked in medical school.
I would be happy to keep in touch regarding my progress!
Hi, I am reading both of u'r comments with interest. I am a 45 yr old female and also for the first time experiencing irregular menus. I have felt an off balance/disequilibrium feeling for 2 years.... Nothing to the point of falling or even anything that anyone else can see. Its an odd feeling that is difficult to explain. I don't see any wavey lines but patterns on the carpet get to me (maybe that's normal).. I notice that when I am sitting in my chair at work and I am looking up at someone talking to me, I get this sillhoette thing happen. I have to blink my eyes a couple of times to make it go away. This does not happen very often. I've had every blood test(b12,thyroid,blah blah blah), been to the neuro, had 3 MRIs, 2 ENT doctors, cardiologist and pass everything with flying colors.In fact my vision improved by 1 diopeder (1 whole point)in each eye. I also went to the Mayo Clinic and had the 1/2 day of vestibular testing. (It was actually fun). Also my hearing was tested. Again, I pass everything with flying colors. I also feel better in open spaces and have even taken up roller blading (go figure). I take no medications. I'm not stressed out or anxious. (Only about this, except I'm getting used to it).JMVA, u mentioned that u had the vestibular testing. Did everything come out ok? The reason I ask is that I wonder if one can come up with perfect results and still have something wrong with the inner ear. Maybe this is my problem. Sorry this is so long. I will be watching this post in case any of us come up with anything. Thanks!!
Thanks jmva...i will look up those excercises and start doing them. I could describe my strange feeling as swaying also. Thanks for the advice.. I also think I am feeling better but when I was at the height of this, I thought I was going to die.. thought I had MS, ALS..etc. but like u said, once the bad things are ruled out I guess we just need to try and deal with it. I hope ur jaw feels better. And I hope the blue tinted glasses advice helps jamilee. When I look at this board and see how many people have unexplained/undiagnosed symptoms, it tells me that as much as the medical doctors know, there's a whole bunch they don't know. Its also good to know that we are not alone. Thanks again.
If indeed this is a problem with the brain processing and seems to be affected by certain lighting conditions perhaps tinted lenses will help alleviate some of the discomfort. My son has several processing disorders and wears blue tinted lenses which help him read without the page going fuzzy. It's just an idea that might bring you more comfort while searching for answers. Opthalmologists will likely tell you it won't make a difference (ours did) but my son is much more comfortable with the blue lenses and went from reading picture books to chapter books. For more info on this you might read the book Breaking the Light Barrier. This woman's son actually saw people and lines that appeared wavy. The theory was proposed primarily as an educational not medical intervention. If you do a search for the Irlen Institute you can find more info at their home page. (I have no affiliations with the Irlen Institute) I just know it helped my son and it's reasonable to think if lighting situations are bothersome that changing the light might give you relief.
Yes, my 1/2 day of Vestibular Testing turned out fine. The doc gave me the Cawthorne exercises to help with imbalance due to visual stimulation. I was feeling a sensation of swaying (although no one could tell) in the spring and summer and that feeling is 99% gone. Maybe the exercises helped!
I am seeing my dentist today to check on my mouthpiece which is for clenching. My previous dentist saw no evidence of grinding and did not comment on clenching. My new dentist spent a great deal of time with me and custom made a device to prevent me from clenching. The past 5 days I am experiencing a very uncomfortable "locked-up" feeling in my rt. jaw area, temple, and neck area. Motrin takes it down a notch but I am tired of taking it everyday!!
I don't know if all my symptoms are related or if I have a couple of different issues. Since the "big, bad things" have been ruled out I guess I will continue to focus on improving my comfort level.
I have been having problems with wavy vision.Especially in supermarkets.My Doctor has reccomended Hypnotherapy.Which I am currently under going at the moment.He has put it down to stress.I was so relieved to read others had similar symptoms.I also find street lights have fuzz around them,like puff balls on Dandelions that we blew off as kids.Had intensive eye checks,the specialist said my eyes are healthy.The doctors are at a loss other than saying,it is something to do with the vortex in the brain not registering as it should???Maybe it will clear itself up or else live with it,how is that for a diagnosis.
To jmva: I'm from Virginia too!
Pamela: what's your vision like in the grocery store? I wonder if mine could have been triggered by stress, too, but it's been a year next month and it hasn't gotten better. Besides, I've heard of stress doing a lot of things, but vision? Weird. I know what you mean about the halos and fuzzy stuff around lights. I sometimes feel like my eyes aren't working in unison, like maybe my right eye is moving at a slower rate/kind of sluggish. My right eye seems to take a little longer to adjust to changing distances, too. But, like jmva, I'm going to look into the exercises and into balance testing. I find that looking from side to forward and from down to up can throw my balance off visually, if you know what I mean. It's kind of like I've had a drink, but the only thing affected is my vision-it's wobbly. Drs. seem perplexed, like they've never heard anything like it. And, I've been to a neuro-ophthalmologist at UT Southwestern in Dallas 7 times! Why couldn't I just have gotten tonsillitis or something easy? @#*%&!!! Thanks for all the great comments on this post. Let's all let each other know if we find out anything. I'll keep checking back. Jamilee
Thankyou for replying,It really helps knowing I am not alone.I Have felt so alone,as no one has heard of wavy vision.It is easier when other people say" oh yes my friend has that.So you can imagine my relief in finding you.When I am in the supermarket
the shelves seem to jump or move,I am ok when in front picking up items,it seems to occur when I am a short distance away from the shelves, looking down the aisle.I will keep in touch and let you know if the Hynotherapy works,it is worth a try.I live in New Zealand..Auckland No doubt treatments are different here from the U.S.
I am so happy I found this topic. I have symptoms similar to all of yours. I sometimes have strain and soreness around my eyes, the top mostly. Sometimes my vision will become scattered/shakey/vibrating (eyes arent physically moving), accompanied with minor dizziness and sometimes followed by extreme drowsiness. It's ALWAYS worse when I stand up and walk around and when im inside. Sometimes the floor looks like its sloping upwards. Heat always makes my symptoms worse. Laying down on the bed and putting an icepack over my forehead and eyes seems to relieve the symptoms a little bit. The only test i've had done is bloodwork, which came out great. I have no numbness, rarely headaches. I get really anxious/panicy when these symptoms arise, that only makes it worse. Once its passed its difficult for me to remember exactly what happened. The most bizzare thing is, when I get in a car and drive around, some of the symptoms dissapear. but florecent lights and certain textures make it worse. I also have minor visual disturbances. I'm on lexapro for depression and ativan, when needed, for the anxiety. the ativan makes a huge difference. Im really scared. Im 25, had to drop out of college cause of this, i have no insurance. the only test ill be able to afford will be an MRI. The symptoms come and go and have been about the same for the last month, when they started. if anyone has any suggestions please please help me. at 13, i was diagnosed with rheynaulds and tested positive for lupus, but was told i dont neccessarily have lupus, whatever that means. I also often go to sleep with and wake up with these bizzare internal shivers/vibrations in my shoulders, neck and back of head. I hope to God this is somehow all related to stress. because I dont know what to do. im a fairly healthy guy, and this just popped up. anyone with any advice or suggestions, please help me.
I am really worried and scared at the moment.I went for a walk this evening It was difficult as the lights in the distance they seemed blurred,car headlights seemed to throw out rays of light.Have you experienced this,or this only happening to me.It was a relief to get back home.I read up about irlen syndrome,I will get tested for that if I can.Please reply soon .....pam
Hi All. I just found this site, and am relieved that I'm not the only one with weird symptoms. Last summer, I got a Hep B shot, and immediately felt "dizzy." My doctor said it couldn't be the shot. Then I got a respiratory infection and the dizziness got worse. The infection went away, but the vertigo did not. Almost 4 months later and 3 doctors later, I still have on and off vertigo, a very sore right ear (deep inside) ringing and popping in my ear, and visual disturbances. Sometimes the floor looks wavy, or the ground comes up to meet me if I'm running. Also, a pattern floor and large open stores bother me for some reason. My ENG detected some abnormality and I was sent for an MRI but that was clean, thank GOD! My doctor says maybe it's a lingering labyrinthitis with a eustachian tube dysfunction. I just wish this would all go away. I am a mother of two and a full time student, so I need to focus, and I can't!!I think that the decongestants seem to help a bit and the Rhinocort too, but I've been living on these meds for months. I hate feeling out of control! Can someone offer me some support, and suggestions? I am feeling desperate at this time. Thanks
Apologies for posting this message here; I
Hello All. I came across this site by accident, but found myself completely involved. I am a 39-yr.-old female. At last I have found others with he same EXACT visual symptoms! Lord knows, I thought for the past 6 1/2 years that I was the ONLY one in the world suffering these symptoms! I, too, see in a wobbly fashion. Straight lines appear to be underwater; they bounce and flash. Certain patterns and carpeting fizzle and wobble. I also see halos and fuzzballs around lights, which greatly interferes with my night driving. They get in the way of objects. My computer screen flashes and pulsates. Fluorescent lights irritate me, and cause my vision to appear distorted (even worse). Bright sunlight does the same. There are times I look out the window and swear it is raining lightly, but it is the static I see, sort of like "snow" on the tv screen. I, too, get a shadow effect when looking away from an object, and feel the need to blink it away. The "ghost image" remains longer than one would expect it to. I am bothered by using stationery exercise equipment, since the room around me is not going past me. I actually get instantaneous headaches coupled with a motion sickness feeling (nausea and fatigue) by watching my own home videos! It seems like my eyes can not keep up with the movement, or they anticipate something different than what is really going on. I, too, feel like both eyes do not work together. I cover one eye, and much of the shaking and wobbling is alleviated, though not all. I suffer from eyes taht feel dry and achy all the time. Eyestrain is a real headache, literally. I get such pain in and around the eye sockets. I feel the need to blink often, and get lots of irritating build up on my eyes. I remember seeing minor floaters as a kid, but they never lasted! NOW, I have accumulated so many over 6 years, and they do NOT go away! I used to be able to draw a diagram showing what I saw in the way of floater numbers, shapes, and whether they were opaque or clear. Now, there's no way I could memorize what is in front of my line of vision; there are just too many. Some are stringy, some black spots, some drift, some bounce. I have one very strange one, that, when it passes in front of my vision, I can see through it, but it is like looking through a giant water droplet, and the scenery I see through it appears jelly-like. Aside from my visual symptoms, I get that buzzing, trembling sensation while at rest, like others have mentioned. It will awaken me at night, and I am aware of it, but it feels like I am paralyzed, and I just don't move or react. I can feel it start out and then spread, eventually consuming my entire upper body and down into my arms. As for when I am awake, I get much trembling, twitching, muscle weakness and fatigue, though I am super-strong, which is so paradoxical. I can load a truck with 70-100 pound tree sections for firewood, but have a hard time lifting my arms over my head or doing other minor things. If I hold a position for a while, while doing a task, I am suffering with trembling and weakness afterwards. Such as now. I am ok typing, but when I stop, I will have these symptoms. I get tingling and prickling sensations all over my body, but mainly in the appendages. My tongue, facial muscles, and even muscles along my esophagus twitch and tremor. Large muscles can easily be seen jerking and twitching. At any given moment, there is at least one twitch occurring somewhere. My symptoms are always present, but do worsen and get a little better. I have stiffness in my hands and other joints; they will lock up on me, too. When I extend my fingers outward, they tremble and act as though they had been clenched for too long. I get burning sensatiions on my skin. My scalp itches and my hair is thinning dramatically. I have had TMJ almost all my life. The muscles and skin on my face feel tight and irritated. I suffer back and neck pain and stiffness. I sometimes can not turn my head side to side. I get ear ringing and humming noises, and hear the vibration that occurs at night. I could go on with my symptoms, but this is getting too long. I have been treated for hypothyroidism, and should be back on the Armour Thyroid, which I will be pursuing. (That is what led me here, on the internet) I felt better while on it, though I was pregnant at the time and always feel better during pregnancy. So I'm not sure which it was. I had an MRI done in 1998- neg. Blood work shows nothing. Urine and blood show some elevations of heavy metals, and I have had some amalgams repalced, but cannot afford all them. Mercury is a BIG issue - please research it. Read Hal Huggins's book, It's All in Your Head, if you suspect mercury poisoning. Thyroid troubles can be caused by this as well, which I do have. A great site to research regarding thyroid is, http://www.drlowe.com. Check out the symptoms page; you will be amazed. Well, I started out comparing my visual symptoms with others', and got into the whole scenario. But all my symptoms began together or in close proximity to one another. They are a grouping; a syndrome. No medical doctor has ever given me an answer. I went to an alternative doctor who really checked out my thyroid and who addressed the amalgam issue. Worth it, but with 6 kids and homeschooling, I find little time for appointments and tests. If it's not one of the kids, then I do not pursue it. God bless you all. I will be watching the posts as they develop on this plight. I don't wish for anyone else to be suffering, but I am thankful you are out there!
wow, i can't believe how many people are experiencing problems and use some of the same terminology i thought i'd invented- i.e., seeing halos, ghost images, one eye seeming to be slower than the other- i understand what it means when you all have written that it just doesn't seem like the brain and eyes work together, or that your eyes aren't working together (i'm about to go check into those cawthorne exercises...).
i had a severe concussion about two months ago and have since had a crash course in eye problems.. i've been diagnosed with a fourth cranial nerve palsy after going to numerous doctors and finally a neuro-opthamologist. our eyes are very related to our nerves- i really recommend asking your doctors about nerve concerns even if you haven't been hit on the head.
to all of you, thank you- it's nice to know i'm not alone, and i hope that you find answers that will help you.
A related discussion, Visually Drunk