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Stroke Survivor - male
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About 2Fight

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  • Birthday November 15

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  1. Great News. Over time + your new PT regimen, hopefully further improvements. There are differences between good and bad MDs and looks like u found a good one. Makes all difference in the world
  2. Hi Linnie, you may want to ask your original Neurosurgeon on exactly what type of metal was used. MRI was introduced in the 80s and I think that you told me that your clipping was in the 90s so they should have known use Non-ferrous metal, not Ferrous metal (with Iron) . Usually, Non-ferrous (not Iron) is used. I believe that the typical clipping metal is platinum. My aneurysm rupture was not clipped but coiled. (platinum) Regulations may be different in Canada for MRI exam than the US which include non-ferrous metal. I don't know. The reason why I ask is based on your family history, routine examination are necessary if new aneurysms are present. Honestly, I worry for you. Please take care.
  3. Linnie, Do you know what kind of metal your clipping is?
  4. One huge advantage of my brain damage is that I can mediate so easily. It can happen with meditation bowls where the meditation happens instantly. I have to be careful what I listen to while I am driving as I will fall into meditation. Previously, I was only able to achieve this state was during meditation yoga classes where I would be able to fall into deep meditation like 1 out of 50 times. Now, I can fall into deep meditation almost on demand like 100% I don't think that even Yoga masters can achieve it as easily. I have a disabilities that I have to deal with but the meditation is a huge bonus.
  5. Steve, Have you thought of reaching out to aggregators who will get know the story of strokeboard.net and the community it serves. You have an amazing story of endurance and the human spirit from your stroke. There is a site called narrative.ly which has editors who write a story of like yours and strokeboard.net. Then, these editorial stories will be shared. In many ways, it is more powerful than blogs. I think that most people do not know that Strokeboard.net as a resource. These stories will get the word out. http://narrative.ly/a-massive-stroke-ruined-half-my-moms-brain-a-year-later-she-wrote-me-this-letter-2/
  6. On this board, several of us can related to this comment. Most of the time, I just try to ignore and live my life but the worst was "narrow mindness" from certain physicians. The worst are the eye doctor. They have their hand to the "schizophrenia button" or "LSD button" in discussing visual disturbance.. It was really hurtful when an eye doctor implies that I am taking psychedelics. But I did get support the 4 Neurologists that I have seen. After TBI or strokes, visual and auditory disturbance" can happen and now I am getting a lot of questions answered. I still see this eye doctor. In my last visit, I stressed importance of "bed side manners" and dress him down with detailed explanation of abnormal vestibular-ocular response, the brain stem and how the system works. In a professional manner, I basically told him that he failed me.
  7. I have had pretty good experience with the Neurologist that I have seen: 2 Migraine Specialists, 1 Hospital In-Patient Neurologist, Professor of Neurology at Research Hospital. All four physicians had some input in trying to unravel my medical mystery. The difficulty is tying in other pieces from other physicians (Ear, Nose, Throat (ENT), Eye, Neuro-Eye, Neuro-Surgeon, PCP). I am very appreciative of In-Patient Neurologist. He did not have to see me as technically, he does not see Out-Patients. But, he was the Neurologist in care of me in ICU and knows my history. He made some interesting comments: He has seen patients with severe infarct based on MRI but without very little Neurological deficits as well as minor infarct in MRI with severe Neurological deficits. He mentioned that Neurology in medicine is the more "open minded" of medical field and more like an art. He mentioned that there are variations in the artery system that can produce interesting results. I agree with him as I found Eye doctors to be rigid and confined to their swim lanes. Fortunately, the current Neurologist that I am seeing was a teacher to my Neurologist. He is trying to arrange a panel to discuss my case as it involves multiple fields. And, finding a good Neurologist makes a difference. After 3 years, he actually gave me a treatment. It is not permanent but provides a solution when I am in a difficult environment.
  8. Best of Luck to you. I hope that you get the care that you are seeking.
  9. Linnie, after a discussing with my physicians, finding the right medical citations (research), and trial/error testing, I am pretty sure that I know the exact cause of the vertigo episodes. Basically, it is central nervous system disorder where there is mismatch between the vestibular and ocular systems. So, certain environments like supermarket aisles (narrow hallways), open atriums of shopping mall, tunnels, complex patterns will trigger visual vertigo. This paper explains it in practical terms. https://www.dizziness-and-balance.com/disorders/symptoms/visual.htm This paper discusses it in more detail. https://www.ncbi.nlm.nih.gov/pubmed/15083281 (It is the abstract but I actually got the full citation from medical library) It is the reason why Strokeboard.net is such a great resource. It looks like Kelli and I share the same issues. It was driving me nuts that I am the only person who has these issues. Through this board, I found that Kelli is suffering from similar issues. So, it is great finding a person who really gets me.
  10. I suffer from room noise from a crowded room or Scottish bag pipe music which hits me like a sensory overload freight train. Music or earplugs work to prevent sensory overload. Recently, I found that just one earplug significantly reduces sensory overload. The problem with putting on two earplugs is that it causes uncomfortable social situations as it gives the appearance of shutting people out. I also considering the newest BOSE in-ear noise reduction earphones. There are two models. Noise reduction and a more expensive conversation enhanced headphones. https://www.bose.com/en_us/products/headphones/conversation_enhancing_headphones/hearphones.html Music has the opposite effect. It is closest thing is natural drug. It is incredible. I definitely have the "ear worm" But, it has a cognitive effect. I noticed that I have gaps in memory from watching certain shows with dialog overlaid with music. Strange.
  11. Kelli, we really share similar issues. I am fortunate to find someone else who shares similar struggles with our unique disability involving balance, irregular ocular movements, and dizziness. I am more prone to vertigo than sensory overload but it happens. AND YES. Music is the antidote to unorganized sounds like room noise and chatter which messes me up. This medication seems to be the solution in dealing with these environments. I just do not consider it a permanent solution due to side effects (insomnia) and potential for abuse. But, if i know that I am going to be stuck in a complex environment which makes me sick, then I have a solution. With this medication, it does not prevent the visual disturbance: double and ghost images, static objects jumping, color sensation, and weird night time vision with LED lights). But, it prevents vertigo and sensory overload.
  12. Hi Ed, In my case, it is used to treat a specific disorder in the Central Nervous System that affects my vestibular dysfunction. I am not sure if it the same in your case but you can ask your physicians. I have been plagued with chronic vertigo. I have a left eye skew deviation so I have double vision. It is somewhat managed by prism glasses but I still get vertigo leaving me dizzy with brain fog. The Adderall completely wipes out vertigo. I still see the double vision but not the affects of dizziness. Also, in crowded rooms where there is a lot of conversational noise or random unorganized sound, I will be overwhelmed with sensory overload. Adderall also eliminates sensory overload where I can tolerate it. However, please be aware of potential substance abuse. (There are several news articles on Adderall addiction). Also, it affects my sleep patterns and makes me irritable. So, I only use it when necessary and very limited). If you have any other questions, please let me know
  13. I was inspired by Kelli's story as we have similar issues with dizziness. This treatment solution was found at Year 3. We just have to be persistent and not giving up.
  14. Did her physician do a full audio and vestibular examination? The reason is that the Cerebullar arteries provide blood for the ear (cochlea - audio, labyrinth - inner ear/vestibular). If she had a cerebellar stroke, she could have damaged the ear. Detecting infarct in the inner ear is very difficult to detect with contrast and highest powered MRI. She could have the symptoms of ataxia (slurred speech, incoordination) as a TIA but feeling of nausea and dizziness from the damaged ear. The reason why I know that above is that I experience an aneurysm rupture by the brainstem which left me with single sided hearing loss and 40% deficiency of vestibular function on right side. There are treatment options but it depends on the diagnosis.
  15. I have been suffering from visual vertigo as a result of aneurysm rupture/SAH by the brainstem. I was diagnosed as Central Vestibulopathy and brainstem vertigo. As treatment, I was prescribed prism glasses (for double vision) and Gapapentin (nystagmus, abnormal vestibular-ocular response). Both these treatments does manage the vertigo but in many environments (shopping malls, large atriums) and places with random unorganized sound, I still get either overwhelmed and dizzy from vertigo. Recently, I was able to see Professor of Neurology at research hospitals. His approach was very different from my other physicians. He put me on a small trial of Adderall which he mentioned has been useful with central nervous system disorders like mine. The most amazing thing is that it works extremely well at 20mg. It is effective 4/4 times in the most challenging environment. I even wore my non-prism glasses (worst case) and vertigo is completed eliminated. I still see the visual disturbance from the double vision (ghost and double vision, warpness of flat objects) but I do not get dizzy. I am susceptible for sensory overload from unorganized sound like crowd noise. With Adderall, it eliminates this problem where I can concentrate without being overwhelmed. I do not consider Adderall as a permanent solution. There is potential for substance abuse and it disrupt normal sleeping patterns. However, it does provide a solution if I know that I am going to be in difficult environment.