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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. 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.
  2. 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)
  3. 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.
  4. 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.
  5. 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.
  6. 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/
  7. 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.
  8. 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
  9. 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.
  10. Linnie, Do you know what kind of metal your clipping is?
  11. 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.
  12. 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/
  13. 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.
  14. 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.
  15. Best of Luck to you. I hope that you get the care that you are seeking.