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Kathy

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Everything posted by Kathy

  1. Hi Annie, I am also a Newbie (6 months post SAH). And, I am a grandma. I know what you mean about the constant feeling of tiredness and wanting to play with grandchildren. It is funny ~ but now my grandsons know that if I come over I usually end up on the couch for a quick nap. One or two will usually join me for part of the time (twins 6, another 7 and oldest 8 ~ all boys). Like Super Mario ~ I have learned to focus on a fixed point and turn my head slowly to another fixed point (learned this in PT) ~ it does help. Again, the "no energy" thing is a bummer. I am the old lady you see reclining on a park bench while the grandsons play (UGH). I'm not embarrassed anymore. When fatigue hits ~ I have to lie down and rest. Best to you. Kathy
  2. Hello Trish, I am sorry for your difficulties. I did not have a shunt or seizure, but in the hospital I had double vision (now 6 months out it has resolved). I have had a feeling of eye discomfort and always dry eyes since the SAH event. My vision did not seem as good, either. And, it does seem worse with cold or sinus issues. I recently went to the eye doctor and he said I have the beginning stages of glaucoma in my left eye. I have a follow up appointment. So, good that you are getting it checked out. I am 61 years old. Family history of glaucoma. I have a personal opinion that when we have gone through a traumatic medical event ~ it seems to "kick in" all our pre-determined genetic health problems as well. I have had more health issues since my SAH that are "un-related" ~ so the doctors say. Take care. Kathy
  3. Hope you had the energy to go out. Glad you have the year behind you and are pressing onward. ~ Kathy
  4. Thank you Karen ~ from a Newbie. I am still reading many posts and just getting to know a few people on this site. Glad to discover your role in getting this site started. So lovely to read your words of encouragement and see your picture. Glad you had the perfect day! ~Kathy
  5. Hello Weedra. I had my SAH at 6:30 pm. I can't imagine ~ were you asleep when your event happened? Oh my goodness. Congrats on your 3 year anniversary and continue to enjoy each day forward.
  6. Hi Clare. I am a Newbie too. In fact, this is my first response post. I am almost five months out from SAH event and am so glad I found this site. It has been so helpful. I still have to sleep elevated to keep headache at bay. Most people in my circle of friends and acquaintances don't have any idea about the unseen disabilities ~ mental deficits ~ and the change in my sensitivity to an overstimulating environment and noise. They all say, "You look great" ~ and assume all is well. It is good to hear from others on this site that I need to be easier on myself and take time to rest. Best regards to everyone and thank you for your comments.
  7. Hello Super Mario. I will try to follow your instructions when I get home. I think it will work. I am on my cell now. Thank you. Kathy
  8. Okay. I am somewhat computer challenged ~ and even more so after my SAH. Also, I am not used to this type of on-line support. I wanted to thank Swishy and Winb143 for the warm welcome to this site. Is there a way to respond directly to those who have made comments to my post? I have been having tingling in my left hand for a week or more. I put a call in to my neurologist and the operator said the nurse would call back ~ but never did. Perhaps I have just been over doing it lately. We traveled to help my 85 year old aunt sort and pack for an upcoming move. I am doing better. I am still learning how to pace myself and adjusting to the new "normal" in slower thought processing and lack of energy. I have another MRI / MRV on August 1 to check the status of blood clots in brain (post SAH event March 6, 2018). I hope the clots are diminished or gone! And, no new clots. I would like to come off the blood thinner Eliquis without further complications. I worry about another brain bleed. But, I have taken the advice of Win and try to sing my fears away. Too bad for my family ~ I can't carry a tune. Thank you again. Kathy
  9. Hello.Thank you for this site. I have read many of the posts. It has been so helpful. I had my SAH on March 6, 2018. I was in the hospital until April 13 (39 days). I am 60 years old. I was on the phone when I felt the severe headache and darkness from back to front of my head (my memory). I fell to the ground but was conscious. My husband heard me fall and came. My speech was slurred. I told him "stroke" and "Get to ER" ~ I don't remember what followed (or first 4 weeks in the hospital). He called ambulance. I was vomiting and had incontinence. CT indicated massive bleed (SAH). It was determined aneurysm by the pattern, sudden onset and amount and location of bleed. However, 2 hospital angiograms and 1 post discharge angiogram could not locate any aneurysms or point of bleed. In the hospital I had a ventricular drain catheter inserted and treatment to prevent vasospasms. I also had hydrocephalus and leg blood clots developed (IVC filter placed and removed 30 days post discharge). In the hospital I also had lumbar puncture drain. I had weakness on my left side but no paralysis. I was scheduled for shunt placement surgery, but late the night before the neurosurgeon said pre-op tests indicated improvement. No shunt. Double vision but okay now (still need to see eye doctor for new prescription ~ changed). My youngest daughter is a nurse and was so helpful during my hospitalization. Our four adult children and their spouses took shifts during the day and late into the evening to be with me. At discharge I was still fairly weak and was told that I had to have 24/7 supervision (concerned about falls). We hired home care assistance for one week but then I wanted to be on my own (it was very expensive and not covered by insurance). I continue recovery with specialized PT, OT and Speech therapy (for mental deficits). I am doing well overall. I struggle with the "new normal" and have trouble knowing how to pace myself. I still have constant headaches, some short term memory loss (and we have discovered that I also have some long term memory loss), trouble with multi-tasking and math computation. Occasional confusion, balance problems and fear / anxiety. I get tired so easily. My husband (he has been wonderful) had just started a new job a couple months before my event that requires much travel. Life is demanding for us as we are raising 2 special needs children (boy age 8 Autism / ADHD and girl 15 Intellectual Disability / Autism). We have four adult children and four grandsons. I also used to teach part time. That is on hold for now. It has been an emotional roller-coaster. My mother passed away soon after my discharge and I was not cleared to attend her funeral out-of-state. There was a miracle in that my mother had been in a comma for almost a week, came out of comma and spoke to me while I was in the hospital (she had Alzheimer and didn't recognize me a year ago) ~my mom was completely aware and lucid and knew who I was. It was a wonderful gift. She passed a few days later. The latest "shock" is that my post discharge MRI / MRV showed that I have cerebral vein and cerebral venous sinus thrombosis (blood clots in brain). I am now on blood thinner and have repeat MRI/MRV on August 1, 2018. I have been told I am a walking miracle (survived SAH without repair and few disabilities) AND I am a walking time bomb. I could have blockage stroke or another brain bleed. I know that this site does not offer any medical advice, but has anyone had blood clots in the brain post SAH? Review of all images shows blood clots not present at admittance to hospital. I am now seeing a hematologist. Testing whether I have any "acquired" or genetic blood clotting disorder. I am a Christian so believe that my life is in the hands of my Creator. It is well with my soul. However, it still is a bit scary. Again, I am thankful for this place where I can share and learn so much.
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