You are not alone!!! I have had the same exact symptoms for the past 5+ years. Even flickering lights (like candlelight or a ceiling fan) make my brain vibrate and shut down and I turn into a vegetable. A ray of sunlight in my eyes makes me weak, vomit and then pass out onto the ground. Patterns make me sick, B&W checkered pattern being the worst, it floors me, Christmas lights make me so bad. I feel better when laying down and on really bad days, the only thing that helps a little is to lay down in a dark, lightless room. I really do know exactly how you feel and how terribly debilitating this is.
Hang in there, do not give up hope, there are answers. Mine was discovered just recently at the House Clinic.
I was diagnosed with persistent postural-perceptual dizziness. This is a recent, new diagnosis in the medical field & it fits me 100%. Finally something that described me 100%. Only a few dr know about this, House Clinic being one of them. If you have been tested for and ruled out life threatening and all other causes for dizziness, then you should check this new diagnosis out. My dr gave me the following website for more info-it is great. The typical patient story reads like our bio.
Under “symptoms”, click on “dizziness”.
Here’s my story for comparison:
Mine started just over 5 years ago after a startling sound caused me to jerk up in bed in the middle of he night. When I woke up in the morning, I couldn’t move. It was like when you just wake up from surgery and still under the influence of the anesthesia, you can’t move even though you need to (I have had to go to the restroom right when being woke up after surgery and was unable to move).
During the first year, I was originally diagnosed with Cervicogenic dizziness. Had terrible neck pain and dizziness was worse with head movement and when reaching up or looking down. Went through treatment for that. During that time, dr figured out I had developed light sensitivity. Went to a neuro-optometrist.
After a year from my original episode, I was able to return to work feeling at about 40%. Still doing vestibular exercises for light sensitivity, wearing chroma gens filters for the fluorescent lighting spectrum that was causing my brain to go crazy. Managed to work for about a year and had a relapse. On again/off again relapses for a year, then real success started. Began to feel better and found myself not looking in my walk path for the next stationary object to lean on and support myself while walking. Then my work relocated and the new building had bright white LED/bluish lighting and I lasted less than 3 hours my first day. The new location had metal walls and had a lot of glare and reflection. Another leave of absence and after “healing” and prescribed blutech filters, returned to work. After a few months, I was down for the count.
During the past 5+ years, I have seen many specialists and passed every test, MRI, VNG, posturography, blood tests are fine. Ruled out lupus, no glandular problems, immune system is good, went to an allergist, chiropractor, acupuncture. Exhausted. Have tried too many meds and they did nothing. My symptoms fit a little bit of this and a little bit of that diagnosis but nothing 100%. Migraines were ruled out. Drs tell me I am not going to die, which is suppose to be a good thing, but most of the time, I want to die to escape the dizziness that no one has a clear answer for. My system has become so overworked dealing with dizziness I don’t feel rested when I wake up after a good nights sleep. I have become very sensitive or allergic to meds. There was no hope in finding an answer and I was not living. My husband has become my caretaker and he has spent hours searching the internet trying to stumble on something that will help me. I hit a wall and have thought about suicide. My friend was diagnosed with cancer the same year of my onset. I was jealous, at least with cancer there are answers, no one had answers for my illness. I know that sounds terrible, but if you suffered from this dizziness, you would understand.
Still being treated for Cervicogenic dizziness. I still have terrible neck pain. Something is causing my brain to go haywire and preventing my treatments from “sticking” so I can fully recover. It has become worse over the past few years. There is a missing piece to the puzzle that dr can’t find and it is preventing me from getting to 100%. I would start to feel better and then the slightest thing (flickering light, going to the supermarket to “test” how well I am doing) would set off a really bad episode.
This year, a receptionist at one of the “routine” yearly dr offices my husband and I go to asked about me when I had to cancel my appointment. When my husband shared my story, she said she knew someone who had the same symptoms and no one could find an answer, that person went to the House Clinic and they are now fine.
So, we went to the House Clinic. After his exam, the dr at the House clinic asked me for my thoughts about my illness and when I told him I think there is a missing piece to the puzzle that is keeping my treatments from working and giving me a full recovery, he said I was correct. I do have Cervicogenic dizziness and there was a missing “part of the puzzle”. He diagnosed me with persistent positional-perceptual dizziness. The description fits 100%, finally something that is 100% me…and the best news, the words full recovery were used. That is music to my ears after 5+ years.
Hope this helps you. Hope you find answers soon. The illness is really bad and not having answers on top of that makes it so much worse. Hang in there and don’t give up, I know it is hard but you will find the answer one day. Hopefully it doesn’t take you 5+ years. No one should suffer with this.