Dean0124
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Dean0124, February 9,  2019  7:56pm EST

Stroke question

I suffered a large cerebellar stroke on 12/9/17 at 55 years old . My symptoms were extreme dizziness,vomiting,and inability to walk .Being a bull headed long time carpenter I did not go to hospital for about four hours .my stroke was found through testing and brain MRI.i was admitted to hospital for three days doctors were amazed I was doing well after such a large of a stroke . I had a echo bubble study which revealed a large pfo. I then received a lot of testing to determine what caused stroke .ultrasound legs, Ct angio abdoman and pelvis,Ct chest pulmonary angiogram etc.  everything came back normal and stroke was considered cryptogenic caused most likely by pfo . I had my pfo closed 4/19 /2018 at mgh Boston! What an incredible team of doctors! I am doing well physically. The question I have is I still struggle with some mental things like worry of another stroke happening,being overwhelmed ,and sometimes noise bothers me. Any feedback would be appreciated! Thank you 

7 Replies
  • AHAASAKatie
    AHAASAKatie, February 11,  2019  10:08am EST

    Thank you for sharing this with us! Life after a traumatic event such as a stroke can be challenging. I can share the information we have regarding life post stroke and I encourage our members to share their experiences and how they managed anxiety about another stroke as well. Please know that we are here to listen, share and support. Best Katie 

  • Kdogg240
    Kdogg240, February 11,  2019  11:07am EST

    Hey Dean, my wife had a stroke back in 2016. She has aphasia and struggles with to many noises. It can cause confusion and  makes her as she describes “funky”. We both also struggle with the thought of her having another stroke. Her neurologist and neurosurgeon believe she will definitely have another stroke at some point in her life. This is hard to think about as we have a small child. The only advice I can give you is to live life day to day. Appreciate things that make you happy. Don’t focus on the things that you have no control over. But focus on the things that are in your control like keeping up with you doctor visits, and if you can focus on diet and taking care of yourself. Keep a positive additude, just enjoy everyday that you have on this earth. These are things that have helped us get through the darkest times. We have finally found our comfort with our new normal and have our minds in the right place for healing. It took us a while. Try and get support from friends and family if possible. And of course this website is a great place for advice and encouragement. Good luck to you and we are praying for your speedy recovery. 

    Sincerly Kevin

  • Spooky75
    Spooky75, February 11,  2019  11:31am EST

    I can completely relate to the anxiety/worry! My cryptogenic stroke happened in my sleep, and while doctors assume it was caused by sleep apnea, I don't think we'll ever know for sure. I was afraid to sleep for months after. I'm on an anti-anxiety med, which helps.

    I also struggled with noise. This has gotten better over time (it's been about 8 months since my stroke), but I, too, still get overwhelmed sometimes with noise or lots of activity going on around me. I hope that gets better, but if it doesn't, it'l be something I'll just learn to live with.

    I suppose for me, it's all about getting used to the new normal - and then getting other people to understand that new normal.

     

  • TEAMGUZMAN
    TEAMGUZMAN, February 11,  2019  2:20pm EST

    Hi Spooky75!

     

    A few months ago, you mentioned about the sleep apnea possibly related to a cryptogenic stroke. I said I would keep you posted! So Thursday I did a at home sleep study, and I go back to the doctor on the 21st. My neurologist recommened that I get this test done, and sent me to a piulmonary doctor, I am anxiously awaiting news. Inn some way, and I know it sounds terrible..but I hope they find this was the cause. living each day not knowing where it came from can cause me much anxiety.

     

    Stay tuned! xo Toni

  • DolphinWrite
    DolphinWrite, February 21,  2019  3:44pm EST

    I'm going to play both sides of the coin for a minute.  You have good concerns, which means asking questions, talking to your doctors and others, researching, but also improving habits.  On the other side, while you'really recovering, none of us know what tomorrow will hold. I had my heart attack while cycling, eating decently for the most part, and on holidays.  Never saw it coming.  Something could happen tomorrow, or down the road, but I told myself I don't want to live that way: worrying.  Then, I think, more things tend to bother.  I'm working on getting better, going back to work, taking on hobbies and a blog, and some social.  All the best to you.  My dad had, what we believe, we're mini-strokes.  We encourage him to enjoy what he has.  I think he''s doing better.  God bless.

  • ree121030
    ree121030, February 25,  2019  12:56pm EST

    I was diagnosed recently (February 6th) with multiple strokes in the left cerebellum.  I have been through numerous tests MRI, MRA, TEE, Carotic Doppler, Trans Cranial Doppler and all have come back normal (which I am very grateful for).  My neurologist and cardiologist are calling these strokes cryptogenic and say I may never know what caused them.  I have a loop monitor now to try and determine if I have A-Fib that is not being detected.  I am also being sent to a rheumatologist due to having a very high positive ANA blood result while I was admitted in the hospital.  My recent ANA is now negative which is baffling to all of my doctors.  I am very fortunte not to have any neurological deficits at all however I still get some tingling in my head and face which worries me.  I am really struggling with the constant worry of another stroke or mutliple strokes happening again.  Every twinge or weird feeling worries me.  I have been cleared to resume all activities (driving, work, working out ect...) and yet I am afraid to.   Any suggestions?  

  • Dean0124
    Dean0124, March 1,  2019  8:25pm EST

    Thanks to all ! I hope and pray for everyone's speedy an complete recoveries. Hi Ree I wore a loop monitor for 30 days which came back negative . as far as your recovery moving forward I would listen to what my doctors say but also do a lot of research on your own.ask a lot of questions . When I was contemplating pfo closure I had a notebook with all my concerns and they answered.I am 14 months post stroke and still experience some tightness,dull pain ,and strange sensations in back of my head .i also have a lot of ear ringing which may or may not be related.I went to work when doctors gave me the ok the only change I made is my 55 hour weeks became 40 .It has helped me going back to work it keeps your mind occupied.as far as the fear and anxiety it is still bad at times .i would try to do things that make you happy ! If that's rest ,working , exercising etc .then do it .I have found that people and family will not understand how you feel but it not there fault . In my opinion I do not feel just because we had a stroke we will have another. Good luck!! 

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