I am. John. I had a small AVM in my occipital lobe that was causing seizures in my right eye and the upper right corner of my left eye. The seizures manefested as a gray shield gradually lowering, some times only part way down, and sometimes all the way down. It took about 6 months to obtain this diagnosis. After the angiogram, I opted for gamma knife surgery. It sounded great - non-invasive, go back to work quickly. Prior to the procedure, I was prescribed generic Dilantin (phenytoin). I felt like was being poisoned, got angry for irrational reasons, and like I was both drunk and hungover at the same time. After gamma knife, I was prescribed a steroid to prevent edema. All I could do was lay down and breathe. A month after being on phenytoin, I asked for a different antiseizure drug. I was prescribed generic Keppra. I dutifully weaned off phenytoin and ramped up the generic Keppra as directed. I experienced color seizures that, if painted, would belong in a museum of modern art. However, I felt drunk on generic Keppra. At this point, the neurologist took over my meds from the neurosurgeon. The neurologist prescribed Vimpat. I again experienced colorful images as I made the transition. On Vimpat, I was still dizzy, but not as bad. However, I broke out in a rash, as I was found to be allergic to Vimpat. After being off Vimpat for a month, I was still dizzy, and referred to an ENT. The ENT diagnosed me with chronic vertigo, and ordered balance testing. After the test results showed issues, I began vestibular rehabilitation. I will have completed 60 rehab sessions early next month. The ENT recently diagnosed me with vertigo of central origin. Basically, it means that nerves connecting different parts of my brain are damaged. After one year, the AVM was gone. Vision in my right eye improved to about where it was years ago, with an important exception. In anything but bright sunlight, I see double and/or ghost images. At night, a single light looks like six arranged in a circle. Today I learned that these issues are also due to damaged nerves. Next week, I will undergo tests to try and determine which nerves related to my vision are damaged. Whatever they are, I am told the damage is irreparable. I am stunned, depressed, hoping it discontinues getting worse, and wondering what will be be next. The neurosurgeon’s website made it look so safe and easy. I have not worked since taking my first dose of phenytoin and recently awarded Social Security Disability.
Hi John and welcome
Are the nerves damaged due to the Gamma knife treatment?
Congrats on the AVM being gone now – do you need to remain on anti-seizure meds then?
Thank you, PositiveCathy, One neurologist thought the phenytoin caused the vertigo. Next week, I undergo testing to see which nerves affecting my vision were damaged. Since radiation was applied to the occipital lobe, I am suspicious of the gamma knife for the vision issues. But I am just a guy. I stopped antiseizure meds shortly after the AVM was found to be gone. I still get seizures about once a month, but they are weak. I can live with that.
John,
Welcome and thank you for sharing your story. You’ve had quite a tough time with the anti seizure meds! The “colour seizures” you describe sound like visual aura, visual paraesthesia.
I’m interested in both the vestibular rehab and the double vision…
- Does the double vision occur if you cover either eye? From what I’ve read, I might expect it not to appear if you cover an eye (either one) which might indicate damage to the sixth nerve.
- Can you describe the things you’ve been doing for the vestibular rehab?
Thanks,
Richard
Thank you, Richard.
The double vision is most apparent and pronounced when I cover or close my left eye, and look with my right. At night, a single light source looks like 6 lights arranged in a circle. It used to just be 3 over lapping circles. If I look at a red traffic light, I see 6 lights arranged in a circle with line segments connecting the lights. The line segments are dynamic. If i close my right eye, and look with only the left without corrective lenses, a single light looks like a dandelion. On Tuesday, I am undergoing testing to try to identify which nerves are damaged. As the right eye experienced seizures before gamma knife, the AVM, and the radiation, was in the occipital lobe, I expect the damaged nerves to be nearby.
Regarding vestibular rehab, I am fortunate to have two good therapists less than 6 miles away. While the insurance lasts, I go twice a week. One of the therapists I think of as traditional. The other, being originally from Taiwan, includes some eastern influences. E.g., simplified Tai Chi.
The traditional therapist starts me with a warm-up, followed by something different each time, and ending with a cool town. Her primary technique is habituation, e.g., how figure skaters learn to turn in circles so fast under control. She asks me what is my number, 1 being feeling pretty good and 5 being in orbit. The warm up is usually sitting on a chair grasping in each hand a handle connected to a rope the goes over a pulley. As I moved my right hand down, and turn my head to the right quickly. I then move my left hand down and turn my head to the left quickly. After 2 to 5 minutes, she’ll ask me my number. It is usually a 2 or 3. We wait 20 to 30 seconds for the dizziness to come down a bit. Next, I extend my arms out and look up quickly, then draw them together quickly and look down, also for 2 to 5 minutes.
Then comes the heart of the session. It can be many different things, and it is different every time. She uses a 5 of clubs and a 5 of diamonds a lot. I usually start with the 5 of clubs. Looking at the middle club, I walk and turn my head side to side. Repeat, except I move my head up and down. Repeat, except I move my head right to left then up and down while walking and staring at the middle club. This one usually puts me in orbit. Lately, we have included stretching for the spine and neck. The cool down is usually a weight machine where I lean back against resistance and move forward smoothly careful not to clang the weight. The sequence is back and forth 5 times, followed by, on a back motion, I pause and turn my head side to side while staring at the middle club 5 times. I then move forward and move my head up and down while staring at the 5 of clubs. I do this for eight minutes, then relax, slowly make my way to a chair to come down before walking to the lobby to find my ride home. I see this therapist about 3 times as often as the other.
The other therapist is always unpredictable and always works me out hard. I call her Dr. Evil. She is much like a personal trainer, making sure my form is perfect on each rep, or she won’t count it. When I am spent, she say “ok, 10 more.” Sometimes she’ll start by asking me what is giving problems. She taught me how to stand, walk on level surfaces, and up and down stairs. Sometimes we look at the waves, and find fixed points near and far to focus on so that the waves do not bother me. She places great emphasis on the core, spine and neck. She usually wipes me out for one or two days following are session. She is always diagnosing, and finds new issues to address. She is very intelligent (her children went to M.I.T.).
Richard, I hope the foregoing somewhat answers your questions. I could tell you more in a phone call. But I am spent now and need to rest.
Best regards.
John
John,
It’s really helpful to share information like that. I’ve got a bit of a residual something or other in my head after my embolization and the doc is sending me for an MRI of my middle ear, which has got me wondering a lot more about my balance. However, I’m nowhere near the degree of off-balancedness that I think you’re having therapy for, so I should take comfort from that.
I was wondering about your eyesight, too. I’m no doctor, though I’ve read a lot of people’s stories on here. From what I’d read, having an effect in one eye was to do with the eye itself rather than interpretation of the images by the brain but again, yours sounds quite “interesting” (for want of a better word) and not as straightforward as whatever other examples I have read. I hope you get some good answers.
Has your vestibular therapy improved your balance / dizziness or can you not tell yet?
Wishing you all the best,
Richard
Richard,
I opted against embolization because the path looked to difficult and the neurosurgeon did not sound confident. If you have peripheral vertigo, I.e., middle ear issues, the literature I read says that such patients recover more quickly than those with vertigo of central origin, which I have. So be optimistic and look forward to it. Best wishes to you.
My eyes were deemed not the problem by the ophthalmologist. As my field of vision is dynamic, it means the damaged nerves are located behind the point where the optical nerves cross. I am guessing that they will be located in the occipital lobe, where the radiation was applied.
My vertigo has improved. E.g., I can now shampoo my hair when I shower without holding on. I walk slower than my wife, but I can go about a mile without getting overwhelmed. What gets me going the most are lots of dynamic objects, such as cars or people. Costco is very hard for me. Yesterday, my wife steered the cart from the from, and pushed from behind. That worked pretty good. When I first went to rehab, a neurologist told me to expect 50% recovery. After 50 rehab visits, a different neurologist told me that I am about as good as I am going to get. That only served to motivate me to prove him wrong,
John
Quite right! I’m pretty good, really. Before my embolization, I was holding onto the stair rail because it felt necessary. I’m generally ok with not holding on these days though I feel I’m regressing a tiny bit. When I first get up in the morning, I am apt to stagger round the bedroom, which can be interesting. Other than that I’m nowhere near your end of the scale as I can cope with the incident angles of things moving just fine, so I can drive perfectly well. I would think some of that might be your sight issues rather than just the balance.
Anyway, good luck. I hope you get somewhere with the nerve tests / scans.
Thanks for sharing,
Richard
Sight is an important part of of the vestibular system. So it can be figured out how to address that to at least the point where it is stable, I believe vestibular rehab will be more effective. I think it would be very effective for you. Go to rehab and be faithful to exercises. Practice them at home. Keep only good vibes, and it will work for you. I am very confident of that.
I am the opposite of you. I am at my best early in the morning, and it gets worse as the day goes on because my brain is using the bulk of its cognitive energy trying to feel balanced. I am about to take a walk to the pharmacy and bank located about a mile away. Construction has not started yet by Town Ordinance, and all of the school traffic should be about done. So I expect it be pretty good. For a long time, I could only do one thing like that a day. But I started taking a custom formulation of 10 mg amphetamine, vitamin B12, and a amino acid. (My cardiologist is also a Pharm. D.) I still get dizzy, but I can power through and do perhaps 4 things per day, albeit it slowly. She prescribed because I was gaining weight, and, as a cardiologist, she does not like that. She wants me active. So I skip afternoon naps (I can’t sleep until the amphetamine wears off in about 12 hours), though I feel I need one. But I am losing the weight and slightly improving fitness. Both are good things.
I three consecutive upcoming sessions with the therapist from Taiwan. I expect them to be brutal, but effective. I am so lucky to have to two excellent therapists located less than six miles away. Furthermore, so long as the rehab is covered by insurance, the hospital provides transportation.
I want to give an update. My vision in bright sunlight has improved to the point where my oldest glasses are most comfortable. However, in thing other than bright sunlight, it is changing rapidly for the worse. One ophthalmologist told me it was my small cataracts. Another says my eyes are fine. Instead, nerves in my brain are damaged. I am scheduled to undergo testing to tomorrow to try to determine which nerves are damaged. I am betting on those located in the occipital lobe, where the gamma knife radiation was applied.
I have been reading about various stem cell therapies. Our brain has its own, but they need to be awakened from their dormant state… if awakened, I’ve read these cells can migrate to the damaged area, and form whatever type of cell that is needed to repair the nerve. If anyone successfully awakened their own stem cells, I would love to learn how it was done.
Good luck for tomorrow! I hope you get some useful answers!
Richard
Thank you, Richard. I have an hour to recover after vestibular rehab with the toughest therapist before beginning the testing. Should be interesting.
I have good news and bad news: I have full field of vision, that was good; the bad news is that the doctor says there is no cure for the damaged nerves causing multiple vision.
Well that’s a shame, but as you say bad news sugared with some good. I would hope his/her view was that you shouldn’t expect to get any worse over time?
The only things I’ve read in this area are that if you ever get worse double vision, to get it checked out as it can be a sign of increased intracranial pressure as the generalised increase in pressure tends to affect the (very long) 6th nerve most and cause the eye muscles not to work in synchrony. With people with AVM / stroke risk or where someone has any bleed or swelling going on, increased pressure can result, so worth treating any degradation as to be looked into.
Very best wishes,
Richard