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Stroke Survivor - male
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Everything posted by 2Fight

  1. Have you considered noise cancellation headphones? I heard that you can calibrate the sound frequency that bother you. In this way, you can enjoy social interactions and block out noises that bother you. You can test several headphones at Best Buys. I think that they have 15 day return policy. They run around $350-400
  2. 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.
  3. It is important to try to isolate all your triggers that causes the vertigo attacks. In my case, it is the dreaded supermarket aisle, Big Box Shopping Malls and other visual environments dealing with depth, field view and motion. It makes me dizzy and nauseous. I kept strict journal notes. In the morning, I would go the dreaded supermarket aisle. Walk five times. 5/5 times vertigo attack. I would then take the medication and wait in the car for 45 minutes. Then, walk the supermarket aisle 0/5 vertigo attacks. Also, I think that you mentioned that you have both vertigo and balance issues. Those are separate issues. Being dizzy all the time sucked and I can relate your issues. But, please consider this medication cautiously as it can lead to substance abuse. It is considered a controlled substance and I am very cautious. It also raises BP so it is another caution.
  4. You sound like a very lovely person and I am sure that you will find a good partner. Having disability and social situation is a tricky business. By social, it is interacting with others (dating, resuming your career, family/friends, etc). It is tricky as "others" may not realize that you are disabled. I am in similar situation as I look normal in the outside but I was horribly dizzy (much improved now thanks to a miracle medicine), abnormal eye movements (like Kelli) and weird night time vision. So, disability was always on my mind. I found that there are a lot of social groups that you can join based on your interest. (Church groups, hiking clubs, literary groups, etc). This way, you can connect and make friends with similar interests. They will understand your disability and accept you who you are. In this environment, it makes it easier to date or just making new friends. In my case, disability definitely affected my confidence but my motto in 2018 is perseverance and resilience. BTW, I am very familiar with AVMs as I am a ruptured aneurym survivor. (VA/PICA rupture)
  5. It is funny that you wrote this post as I tested with poor reading comprehension after my brain bleed. But, in my case, it is due to my jumpy eyes and double vision. Even though I have prism glasses, I am reading (like this screen) on a curved plane. And my eyes jump so it slows down reading. I was also surprised how poor that I tested. If I wear an eye patch, it makes it easier to read. I actually saw my measurements at the Neuro-Ophlmalogist where the physician is a researcher. I participated in a study where I read a paragraph and they have a high speed camera and tracking device to record my eye movements. The adnormal jerk reaction affects my reading. Another interesting thing is recall of watching movies. If I watch an old movie or TV show (pre-brain bleed), I pretty great recall of the movie. However, I have been watching Netflix's recent shows (post-brain bleed) like Daredevil or Star Wars Rogue One, it is like watching it for the first time. I have to watch the show several times.
  6. I have been on a very controlled regimen of adderall for the past 7 months. By controlled, I have only taken 18 times in 7 months @ 20mg. This medication completely controls the vertigo even if I wear my non-prism glasses. The surprising thing is that the benefits lasts approx 7 days after it is out of my system. Overall, it has put a dent on my vertigo where it is no longer a major complaint and I have a lot more confidence now. I still have jumpy eyes so static objects appear to move and other visual disturbance (double vision, flat objects that appear warped). And,also it seems to control the over stimulation wipe outs that I would get in high stimulation environments (restaurants noise) but my overall quality of life is definitely better.
  7. Hi Ed, Just checking in on how you are managing your dizziness. I think that I mentioned in previous exchanges but there are various forms of dizziness. 1) lightheadedness, 2) imbalance, 3) vertigo. I had imbalance and vertigo. My question is what findings did these specialist uncover. In my case, the ENT testing found that I had 40% vestibular loss in my right ear, abnormal eye movements, abnormal gait, clumsy walking, depth issues, imbalance. The Neuro-Eye doctor found that I had a left skew deviation in my left eye, confirmed the double vision, recorded my irregular eye movements. This information with a review of my MRI and CT scans resulted in a diagnosis as Central Vestibulopathy or Brainstem vertigo. It makes sense as my brain bleed occurred by the brainstem. For the vestibular/vision/balance Neuro-PT, here is some background. http://www.acnr.co.uk/2013/09/visual-vestibular-interaction-basic-science-to-clinical-relevance/ It does help but you can find some DIY techniques on Youtube. I still do the exercises which did help. The prism glasses also helped but like you, I was in a dizzy state most of the time. It sucked. So far, Adderal has been very effective but there is side effects in increasing blood pressure so I am cautious. I am on a path to recovery.
  8. Try this App. It is amazing. Basically, it uses AI to read text. I have issues with reading with my double vision and abnormal eye movements which impacts my vision so I use it sometimes. https://www.microsoft.com/en-us/seeing-ai/
  9. What I found to be very useful is keeping a good journal. By Journal, it is very descriptive especially including how medication affecting me as well as keeping track of long term changes which is difficult to track on a daily basis. For all my issues, it has been primarily sensory (vision, vestibular, auditory, balance, touch) ; however to my amazement, there is a memory issue especially heavily dense story lines on TV series. I am surprised how much memory gap that I have after rewatching these shows 1 year after as though I am watching for the first time. Now, you bring an important measure in evaluating my cognition via math problems. I know that there are resources like Luminosity but I can also pull my Physics and Math books from the garage. So, my plan is to test myself at least 3 times a year to monitor whether any changes to cognition as well as memory tests. The key parameter is how to objectively self evaluate.
  10. 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
  11. 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.
  12. Linnie, Do you know what kind of metal your clipping is?
  13. 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.
  14. 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/
  15. 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.
  16. 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.
  17. Best of Luck to you. I hope that you get the care that you are seeking.
  18. 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.
  19. Last night, I watched a documentary on the Life and Work of Dr. Marion Diamond. She was one of the pioneers of Neuroscience and considered one of Giants of modern Neuroscience. She was a Professor at UC Berkeley and changed the view of Neuroscience in the area of brain plasticity in 1964. Prior to her study, it was thought that the brain was static and genetically imposed. In the 80s, she was the lead investigator in studying Einstein's Brain and found that his brain had unusual degree of Glia cells. Now, the study of glia cells is important part of Neuroscience research. The principles of Neuro-PT finds its roots in her work as Neuro-PT involves exercises to rewire damaged neural paths. She is in her 90s and she is still very sharp. The documentary was also really interesting in that Neuroscience starts with study of rats/mice. Currently, studies involve fMRI and other advanced imaging to study Neural paths but these Pioneers like Marion Diamond started with Mice. http://lunaproductions.com/marian-diamond/ http://iws.collin.edu/blusk/Krech and Rosenzweig .pdf This documentary was profound for me. She discusses many things like Diet, Enrichment, Brain Plasticity to continue to improve our cognitive and emotional well being. I find it compelling that most stroke rehabilitation and research roots are found in her ground breaking work. I will post more videos in relation to brain plasticity, diet, love, and glia which may be indirectly related to our issues but is more relevant from a way of life and mindset in our recovery.
  20. 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.
  21. 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.
  22. 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
  23. 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.
  24. 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.
  25. I am watching on the news and it is currently hitting the Keys. I hope that you, your family and your household is fine from this storm. Have your ear plugs ready as the sounds are going to be horrible as I am watching the news. Hope that neighbors can also help. As we both suffer from effects of over stimulation (sounds, visual, visual-depth), I recently found a temporary solution. My new Neurologist put me on a short trial of prescribed Adderall for brainstem vertigo. It works remarkably well in controlling not only my vision induced vertigo but also the effects of over stimulation in the most challenging environments. I do not consider it as a permanent treatment as it has side effects and potential for substance abuse but it gives me confidence in worst scenario when I need to take it.