Stroke Survivor - male
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About 2Fight

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  • Birthday November 15

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  1. Scott, Unfortunately, medication used to treat abnormal neural pathways affects the entire brain not just the pathway that it was prescribed. So, with these medications (Lamotrigine - Lamictal, Gapapentin - Neurotin), it affects the entire brain and you need to step up in the trial or step down in order to ween off. If you read the description of Lamotrigine, it is used to treat every thing from bipolar, pain management and seizures just like Gapapentin. My Neurologist explained that it was a calcium blocker. I found this lecture to be useful to understand some basic biochemistry and how neurotransmitters work. Lamitical is used to slow down this activity. http://neuroscience.uth.tmc.edu/s1/chapter05.html I was on a trial of Lamictal for over 1 year but I switched doctors who prescribed Gabapentin as a treatment to nystagmus and vertigo but it has sided affects at full prescription making night time poor but found sweet spot at half dosage. Have you tried lower dosages (you need to step down)? For trials, I also recommend keeping a journal. These medications can affect others things which may have not noticed. Good luck to you. I do not live with central pain but chronic vertigo. I hope that you find the right combination that works for you.
  2. Karen, Initially, I just described my issues to my physicians but from their responses, I realized that they really did not understand what I was experiencing. So, I started to take a journal noting environments that I have issues in as well as environments that I do not have any issues. Then, I started to take pictures of these environments as well as sound clips. (I do not alter these pictures, videos nor sound bites) It turns out that there is very specific environments which I have problems. Then, I found citations on PubMeds that explains the root causes behind these issues. I recommend keeping a journal then review it after 3 months to see if a pattern develops. 1. Does sensory issues worse when you get an anxiety attack? 2. Or do you experience a sensory issue followed by an anxiety attack? 3. Are there specific environments which is uncomfortable? For my case, I have problems with narrow hallways, tunnels, shopping malls, neon lights, LED lights, certain colors. Best of Luck and congrats in getting an appointment to see a Neuro-Eye doc.
  3. Karen, I just read the PM that you sent me. So, I understand that color saturation happened during the stroke. My friend had the same issue when he had his stroke. Nystagmus can cause blurry vision and it happens me me time to time where things will go out of focus. Lets see what your eye doctor says
  4. Kellie, I am so fortunate that I got to meet you through these sites as you are dealing with the same struggles as myself. When I say visual vertigo, most people including other doctors just do not understand the context. So, I just give them these articles: https://www.ncbi.nlm.nih.gov/pubmed/15083281 http://www.dizziness-and-balance.com/disorders/symptoms/visual.htm Strength in Numbers. At least, there are some people with the same issue and that we are fighting back. Charles
  5. Karen, unfortunately, when it comes to visual disturbance, there is a strong clinical bias that it falls under psychiatric care. Your physicians may believe that this visual disturbance lies in some emotional/cognitive category. But, are you experiencing anxiety, confusion or memory issues? For this reason, I started to take pictures and provide an exact description on what I am seeing. In my case, it was interesting as physician noted strong cognitive ability to dispel notion of cognitive disorder. Are you seeing the color bleed in right, left or both eyes? Do you issues with all colors or only certain types? If you were sunglasses, does the color saturation change? If you have access to Photoshop, you can add saturation to a color to show the color bleed. I still think that you should see a Neuro-Ophlamalogist
  6. I also have vision issues. I recommend getting a second opinion by a Neuro-Ophthalmologist especially since you are experiencing saturation of colors and non-typical acuity issues. This specialist will review your MRI and whether determine whether your vision is due to brain rather than the physical eye. The regular eye doctor can do a peripheral eye test, refraction, eye pressure, color test and in depth examination of the physical eye and nerves. However, Neuro-Ophthalmologist can provide a more in depth examination as it relates to the brain.
  7. Did your stroke affect your balance system (vestibular)? If so, the sea sickness will be worse. I advice that you see an Ear, Nose, Throat and explain your issues. It may be a visual component as well as Scott mentions. Do you get sick looking at motions of a swimming pool? I know these problems very well as I have central vestibular issues. It is a kind of brainstem vertigo.
  8. Hello Deric, I have similar issues with my vision and balance. In my case, it was the large fusiform aneurysm which ruptured in the vertebral harboring the PICA (lateral medullla and lower bottom Cerebellum) resulting in SAH right by the brain stem. I also bleed into the 4th ventricle. It damaged the vestibularcochea nuclei VIII and I was diagnosed central vestibulopathy and brain stem vertigo. I have both nystagmus as well as double vision. The nystagmus is controlled by Gapapentin. The double vision is treated with prism glasses. But, both treatments are only partially effective. Most people do not understand that not only does double vision make it difficult to see but induces visual vertigo. So, narrow hallways, large spaces like shopping mall makes me dizzy (vertigo) Hang it there. After seeing 9 doctors and getting only partial solutions, I have my own DIY techniques that seem to work. Welcome to this board. Charles
  9. I did the same thing when I did my eye retraining exercises. It made me so nauseous. The worst is moving your head side by side and looking at a complex object. I eventually worked up to 80 head turns per minute (a normal person is 120 turns per minute). In today's visit with my normal eye doctor, we talked about acuity strategy as prism glasses, progressives and high index glasses. I may need to switch to thicker glasses to increase my acuity window. Also, I may need to abandon progressives and just get bifocals or dedicated reading glasses. I am also thinking of wearing an eye patch when reading. Good luck on your recovery. I really understand you. :)
  10. Kelli, I have been thinking for a while for my own condition but what about wearing a eye patch for temporary relief? I am experiencing similar issues as I have been trying to reduce my Gapapentin (Neurotin) dosage as it has a side effect making the world darker (not metaphorically but literally). Unfortunately, with reduced Neurotin, the nystagmus is worse making things blurry. I am really pulling for you as we have similar disabilities with our vision (double vision and nystagmus). It sucks because it affects acuity as well as affects balance and dizziness.
  11. Kelli, I think that you mentioned that you recently had surgery to correct your nystagmus (jumpy eyes). If so, it may have changed your eye position affecting your vision. But, it may be that it was corrected in a good way but if you are wearing the same prism glasses, then the glasses itself may cause double vision leading to motion sickness and vertigo. Are you going to see your optometrist? The reason why I am asking is that when I initially went on Neurotin to control the nystagmus, it did also affect the effectiveness of the prism glasses. I need to change the glasses prescription. So, perhaps, it is your old pair of prism glasses that it making you sick and giving you a migraine.
  12. Kelli, You and I have similar issues with both double vision and nystagmus. So far, on this board, you are one of the people who have both issues. I can SO relate to you. You are on the people on this board who completely understands my medical condition with vision. When I explain both double vision and nystagmus to my physician, I look at my iPhone. When I am on Google, I see the ghost image that actually bounces around. It sucks because we get vertigo, nausea, and acuity issues due to both conditions. These are my DIY remedies after reading some great articles as well as treatments recommended. 1. Motion sickness/dizziness when walking in narrow hallway. I always wondered why I get vertigo walking through a narrow hallway like grocery store aisle. My physicians just shrugged their shoulders. Then, I found this article completely explaining the phenomenon. http://www.dizziness-and-balance.com/disorders/symptoms/visual.htm Just looking at the images makes me dizzy. So, my technique is either side glancing at the right or left when walking through a narrow hallway. 2. Prism Glasses. I have a left skew deviation on my left eye as well as vertical difference between both eyes. It is the cause the double vision. However, prism glasses has been just a moving target. Also, I have both near and far sighted vision so I have prism glasses in both fields (near and far sighted). However, the acuity window with prism glasses is very narrow. Just a slight glance (10-15%) will give me blurriness. So, in order to have 20/20, I need to look dead center. I found out that with high index glasses, the acuity window is very limited. So, next year, I probably have to get thicker glasses to get a better acuity window. (Note: Both Ophlamalogist and Optometrist did not provide this solution. After being really persistent, the optometrist finally admitted that thicker glasses will give a wider acuity window. Ophlamalogist (MDs) are pretty useless from this standpoint. 3. Wide View When I go the shopping mall, I will get instant vertigo looking a wide view in an atrium setting. This article completely explains it. https://www.ncbi.nlm.nih.gov/pubmed/15083281 I had a recent consultation with Professor of Neurology. He asked me to try a small trial of Adderall. It was strange but it actually helps cope with the vertigo. At 20mg, the tolerance to vertigo lasts about 1 week. It has side affects but it may be solution if I know that I am going to be in a challenging environment like a shopping mall. There are things that I am still trying to find a solution like chronic eye soreness with the prism glasses. For migraines, there is a thing called Vestibular migraine. It is something to ask next time you have a visit with your Neurologist. Opiods are not very effective with migraines. I was treated with Lamictal initially when diagnosed with vestibular migraine.
  13. My Late Father who was a pediatrician was old school and would contact Specialists so the parents would be at ease. It sounds like this Neurologist is from the same old school medicine. Great that you found a good team to address your issues.
  14. I think that it depends on the person's intent. If the person sincerely thought that a challenge would help you, then just chalk it up to a person who meant well but it is just does not work for you. If the person was being sarcastic, then the person is a douchebag. For myself, I am challenged everyday with dizziness and vertigo. So, I looked at Neuro Physical therapy like training for the Olympics. It is hard work because it makes you nauseous. So, if a person told me that I should train for Special Olympics, I would have taken it as encouragement. Also, there are strokes that effect executive, emotional and cognitive thinking so for those survivors, Special Olympics may be a place for them.
  15. I was on Lacmital to deal with chronic dizziness. It helped with the imbalance issues. The side effect is that it made me feel a little edgy which is a known side effect. The 2nd physician told me to ween off Lamtical and switched to Neurotin as my issue was central vestibular disorder. As I understand, Lacmital is anti-seizure medication but used for pain and mood disorders. It is great that you went to see a Neurologist who projects confidence. I hope that the treatment would give you relief.