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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. I suffer from single sided hearing loss in mid range in my right ear from my vascular event. I do not suffer from any "perceived" hearing loss as my brain has compensated for the loss. But, I have constant tinnitus; however, like you, certain sound is louder where I have to keep volume low. I know the reason in that with cookie bite hearing loss, the shoulder sounds will sound louder. Is your hearing loss all frequencies or just mid range? If mid range, it will explain why everything sounds so loud. Have you considered wireless headphones which you can tune to block out the excessive sounds so you can key in on the sounds that you desire? At Best Buy, they have 15 day return policy. In your country, do stores have a return policy? In this way, you can test them before you buy. https://www.bestbuy.com/site/bose-hearphones-conversation-enhancing-headphones-black/5886100.p?skuId=5886100
  2. 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
  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. 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.
  14. 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.
  15. 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