you had a stroke how did it go
April 13, 2021 7:36 PM Subscribe
I just had a "mild" stroke on my right side. I would not have put myself in a risk group, but here i am. After your stroke, what would you have done differently to improve your outcome?
I'm obviously going to follow medical advice. I cannot detect any defecits but they tell me i have a bit of facial sag on my left side.
I'm kinda looking for reassurance or life tips here, or things to be watching for over the first few weeks post stroke. I'm in my mid 50s and live on my own.
I'm obviously going to follow medical advice. I cannot detect any defecits but they tell me i have a bit of facial sag on my left side.
I'm kinda looking for reassurance or life tips here, or things to be watching for over the first few weeks post stroke. I'm in my mid 50s and live on my own.
I had a mild stroke in my early 30s (I'm 42 now). Honestly, the thing I wish I'd done differently is give myself more recovery time - I went straight back to work a few days later (to be fair, somewhat against medical advice), and I should not have done that - it absolutely made the recovery take longer.
The big change for me is that it affected how many tasks I could keep "in memory" at any given time - this was non-obvious to me at first, but especially after, I had to be really careful to not overload my brain with lists that needed to be written down, because stuff would just.... drop off the end, and not get done! This has improved with time, though mostly due to coping strategies rather than my brain getting a "lot" better. The other side effects did subside for me after a month or so - this was very mild, and I was in my early 30s. Your mileage may/will absolutely vary (one of my siblings had one at 21, and her side effects lasted longer. My mother in law had one in her early 60s, and bounced back faster than I did. Everyone is different etc :))
The physical sagging seems to have gotten better within a couple of months for everyone I know in the stroke club though, so if that bothers you, there is that.
posted by jaymzjulian at 9:51 PM on April 13, 2021 [3 favorites]
The big change for me is that it affected how many tasks I could keep "in memory" at any given time - this was non-obvious to me at first, but especially after, I had to be really careful to not overload my brain with lists that needed to be written down, because stuff would just.... drop off the end, and not get done! This has improved with time, though mostly due to coping strategies rather than my brain getting a "lot" better. The other side effects did subside for me after a month or so - this was very mild, and I was in my early 30s. Your mileage may/will absolutely vary (one of my siblings had one at 21, and her side effects lasted longer. My mother in law had one in her early 60s, and bounced back faster than I did. Everyone is different etc :))
The physical sagging seems to have gotten better within a couple of months for everyone I know in the stroke club though, so if that bothers you, there is that.
posted by jaymzjulian at 9:51 PM on April 13, 2021 [3 favorites]
Not a stroke, but I had a heart issue that required emergency treatment. I lived alone. My cardiologist insisted, after a month of physical recovery, that I see a therapist to discuss any psychological issues I may have. I did not think that I had issues, but in hindsight it was a very good idea.
Cardiologist talked about how a life threatening event usually had, at least, subconscious reactions. Some become fatalistic, some become extremely cautious, some become hypersensitive to the slightest health change and then extrapolate worst case scenario.
Living alone, I was scared to go to sleep worrying that no one was around to help me if I had an issue while sleeping.
My point is to at least monitor your mental health.
posted by AugustWest at 10:03 PM on April 13, 2021 [10 favorites]
Cardiologist talked about how a life threatening event usually had, at least, subconscious reactions. Some become fatalistic, some become extremely cautious, some become hypersensitive to the slightest health change and then extrapolate worst case scenario.
Living alone, I was scared to go to sleep worrying that no one was around to help me if I had an issue while sleeping.
My point is to at least monitor your mental health.
posted by AugustWest at 10:03 PM on April 13, 2021 [10 favorites]
I taught my kids the FAST stroke acronym and we had a print out of what to do on the fridge for a long time.
Don't avoid the ER if you can afford it. Early intervention is very helpful and it's really hard to tell which time is going to be actually serious when you're the person whose brain is going kablooey.
posted by dorothyisunderwood at 10:16 PM on April 13, 2021 [1 favorite]
Don't avoid the ER if you can afford it. Early intervention is very helpful and it's really hard to tell which time is going to be actually serious when you're the person whose brain is going kablooey.
posted by dorothyisunderwood at 10:16 PM on April 13, 2021 [1 favorite]
Do they know why you had a stroke? Do you have an appointment with a neurologist, preferably a stroke specialist? I would have thought this would be standard, but when my grandmother had a stroke they tried to discharge her from the hospital with only PCP follow-up until I raised a stink and insisted she see a stroke doc. That appointment was invaluable in determining why she'd had a stroke, and now she's on targeted therapy to reduce her risk of having another.
If you are still at the location in your profile, you're near one of the largest stroke teams in the country. Memail me if you are having trouble making an appointment. Relatedly, please school any health professional who calls it a "cerebrovascular accident;" it's not an oopsie, it happened for a reason, and their job as a clinician is to figure out that reason so that it hopefully never happens again. (It's actually a pretty good shibboleth: anyone who says "cerebrovascular accident" has had little to no neurology education and also likes to use unnecessary jargon; avoid on both counts.)
OK stepping off soapbox.
There are also stroke survivor support groups, I assume meeting virtually now. Stroke.org is a good resource.
Strokes in the right side of your brain / left side of your body can affect your body's self-awareness of what happened. That might be why you don't notice a facial droop but others do. This means that "easy" tasks can become surprisingly hard -- above and beyond whatever motor or sensory changes you've experienced, your brain keeps forgetting (for lack of a better word) what went down. That can get frustrating and can also make rehab more challenging. I don't have specific advice there (but my stroke buddies might!), just acknowledging the issue.
AugustWest's point about mental health is a really good one. There's the whole "subconscious fear" factor, but also something physiologic -- people also have higher rates of depression after heart transplant than other types of transplant, for instance, and broken heart syndrome is a whole thing. If you're feeling depressed, you don't have to just "power through."
posted by basalganglia at 12:00 AM on April 14, 2021 [16 favorites]
If you are still at the location in your profile, you're near one of the largest stroke teams in the country. Memail me if you are having trouble making an appointment. Relatedly, please school any health professional who calls it a "cerebrovascular accident;" it's not an oopsie, it happened for a reason, and their job as a clinician is to figure out that reason so that it hopefully never happens again. (It's actually a pretty good shibboleth: anyone who says "cerebrovascular accident" has had little to no neurology education and also likes to use unnecessary jargon; avoid on both counts.)
OK stepping off soapbox.
There are also stroke survivor support groups, I assume meeting virtually now. Stroke.org is a good resource.
Strokes in the right side of your brain / left side of your body can affect your body's self-awareness of what happened. That might be why you don't notice a facial droop but others do. This means that "easy" tasks can become surprisingly hard -- above and beyond whatever motor or sensory changes you've experienced, your brain keeps forgetting (for lack of a better word) what went down. That can get frustrating and can also make rehab more challenging. I don't have specific advice there (but my stroke buddies might!), just acknowledging the issue.
AugustWest's point about mental health is a really good one. There's the whole "subconscious fear" factor, but also something physiologic -- people also have higher rates of depression after heart transplant than other types of transplant, for instance, and broken heart syndrome is a whole thing. If you're feeling depressed, you don't have to just "power through."
posted by basalganglia at 12:00 AM on April 14, 2021 [16 favorites]
1. I'd have sought out a therapist. I was 25 and the experience left me with some significant panic about how much time I had left. Which, ultimately, helped me gravitate toward self-destructive behaviors, some of which I still struggle with now (at 40). I think I understood what was happening when it was all new, but I didn't know what I was able to do about it. It felt... I don't know, gravitational.
2. I'd have rested. I'd have taken off more time from work and grad school. In part to recover, but in part to do item 1 above.
3. I'd have spoken with more and more kinds of rehabilitation specialists. I didn't have any outward impacts on my mobility, but I was left with waves of varying degrees of confusion, aphasia, and a persistent motion-sensitive headache. I didn't think physical therapy or other kinds of attention to long-term quality of life questions even applied to me. I dealt with that headache for years, but finally saw someone about it when I was 32, and learned all sorts of little piecemeal strategies to cope with and lessen its presence in my life. I mean, I was able to start jogging, for goodness sakes, something that previously would have been a non-starter.
4. I'd have started genuinely paying attention to my fitness levels. Instead I physically went the other direction. It took me a long time to turn that ship around, but when I eventually did and sought out ways to be active it was a game changer.
Be well.
posted by late afternoon dreaming hotel at 3:30 AM on April 14, 2021 [3 favorites]
2. I'd have rested. I'd have taken off more time from work and grad school. In part to recover, but in part to do item 1 above.
3. I'd have spoken with more and more kinds of rehabilitation specialists. I didn't have any outward impacts on my mobility, but I was left with waves of varying degrees of confusion, aphasia, and a persistent motion-sensitive headache. I didn't think physical therapy or other kinds of attention to long-term quality of life questions even applied to me. I dealt with that headache for years, but finally saw someone about it when I was 32, and learned all sorts of little piecemeal strategies to cope with and lessen its presence in my life. I mean, I was able to start jogging, for goodness sakes, something that previously would have been a non-starter.
4. I'd have started genuinely paying attention to my fitness levels. Instead I physically went the other direction. It took me a long time to turn that ship around, but when I eventually did and sought out ways to be active it was a game changer.
Be well.
posted by late afternoon dreaming hotel at 3:30 AM on April 14, 2021 [3 favorites]
Oy! Sorry you're going through this. Take some time off. Ask for help. You live alone! If you know anyone who is vaccinated who can come by and bring a meal or just spend time with you, now is the time to bite the bullet and ask for help. (Also, get vaccinated now if you're able to schedule! Getting COVID on top of this is not something you need).
If your provider says you have a deficit, then I suggest advocating for all the outpatient therapy you can get. Request PT & OT and take advantage of the exercises they teach.
The biggest thing I can think of is: the highest risk for strokes is a history of strokes. Do you have any changeable risk factors for stroke? Quit smoking, quit drinking, take any prescribed medications for blood pressure or blood sugar, exercise daily (even if it's walks or yoga or other low impact activities.)
This is a big thing to go through. It's good you're reaching out for advice.
posted by latkes at 8:07 AM on April 14, 2021 [3 favorites]
If your provider says you have a deficit, then I suggest advocating for all the outpatient therapy you can get. Request PT & OT and take advantage of the exercises they teach.
The biggest thing I can think of is: the highest risk for strokes is a history of strokes. Do you have any changeable risk factors for stroke? Quit smoking, quit drinking, take any prescribed medications for blood pressure or blood sugar, exercise daily (even if it's walks or yoga or other low impact activities.)
This is a big thing to go through. It's good you're reaching out for advice.
posted by latkes at 8:07 AM on April 14, 2021 [3 favorites]
I had a (thankfully) very mild stroke 2 years ago in my brain stem. The affects were so mild, and I was so horrified and shameful about the stroke that I minimized to myself and to my neurologist any lingering effects. I has some mild balance issues and also very, very mild intermittent incontinence. I really wish I had gotten some PT for both issues, but I couldn't bear to admit any deficiencies let alone take action. Also, as others have said, I had mostly mental health issues dealing with the event. Thank god for my therapist.
posted by primate moon at 8:41 AM on April 14, 2021 [2 favorites]
posted by primate moon at 8:41 AM on April 14, 2021 [2 favorites]
I had a major stroke in the right side of my brain when I was 28, more than forty years ago.
It took me a couple of years to figure out I needed a therapist, don't wait. It's well-documented that many people get depressed after a stroke. Some also get manic, I think I had mild bipolar for a couple of years.
I lost my ability to remember birthdays and phone numbers and never got it back, and should have made sure to write everything down. I did not lose my ability to do math but do transpose numbers sometimes.
My only physical therapy was self-prescribed: I got back into doing pottery on a wheel which requires using both hands. Something I do now that I wish I'd thought of is that I swim regularly, almost exclusively breast stroke which means that arms and legs are doing the same thing, as opposed to freestyle in which arms and legs are going left right left right in opposition. Or walking. I do have some balance issues, I don't like ladders, and I never could dance as easily as I used to.
I permanently lost lower left peripheral vision. You can check that yourself by holding you hands in front of you and then moving them back toward your shoulder while looking straight ahead. I am not confident riding a bike in any kind of traffic because I can't see anything when I look over my shoulder to the left. When I drive I'm extra cautious with mirrors.
The worst thing, especially in the first year or two was the fear that it would happen again. I was very healthy and fit before it happened but I did have migraines. The stroke cured that, haven't had one since. The doctors were useless, they kept telling me this sometimes happens to women my age on the pill (hormonal birth control) and I kept telling those condescending men to read the fucking chart, that I wasn't on the fucking pill, had not been on it except for a few months ten years earlier. They just treated me like I was an idiot because I was a young single mom on welfare and Medicaid. I finally got a new doc, a woman, who reassured me that I would most likely not have any more problems. When I earned a PhD 17 years after the stroke she cheered me on. If you like your docs, keep them, if you don't, find better ones.
Heal well!
posted by mareli at 9:30 AM on April 14, 2021 [4 favorites]
It took me a couple of years to figure out I needed a therapist, don't wait. It's well-documented that many people get depressed after a stroke. Some also get manic, I think I had mild bipolar for a couple of years.
I lost my ability to remember birthdays and phone numbers and never got it back, and should have made sure to write everything down. I did not lose my ability to do math but do transpose numbers sometimes.
My only physical therapy was self-prescribed: I got back into doing pottery on a wheel which requires using both hands. Something I do now that I wish I'd thought of is that I swim regularly, almost exclusively breast stroke which means that arms and legs are doing the same thing, as opposed to freestyle in which arms and legs are going left right left right in opposition. Or walking. I do have some balance issues, I don't like ladders, and I never could dance as easily as I used to.
I permanently lost lower left peripheral vision. You can check that yourself by holding you hands in front of you and then moving them back toward your shoulder while looking straight ahead. I am not confident riding a bike in any kind of traffic because I can't see anything when I look over my shoulder to the left. When I drive I'm extra cautious with mirrors.
The worst thing, especially in the first year or two was the fear that it would happen again. I was very healthy and fit before it happened but I did have migraines. The stroke cured that, haven't had one since. The doctors were useless, they kept telling me this sometimes happens to women my age on the pill (hormonal birth control) and I kept telling those condescending men to read the fucking chart, that I wasn't on the fucking pill, had not been on it except for a few months ten years earlier. They just treated me like I was an idiot because I was a young single mom on welfare and Medicaid. I finally got a new doc, a woman, who reassured me that I would most likely not have any more problems. When I earned a PhD 17 years after the stroke she cheered me on. If you like your docs, keep them, if you don't, find better ones.
Heal well!
posted by mareli at 9:30 AM on April 14, 2021 [4 favorites]
Find a neurologist, not just an internist - start with the team that followed you at the hospital, who will have access to all your records. You definitely need follow-up, and possibly physical therapy. The most important sign that you are at risk for a stroke is that you have had one. Not following up on the underlying reason for the stroke puts you at increased risk for another one.
You may need bloodthinners. Did you get started on them in the hospital? They need monitoring.
You may have plaque in your corotid arteries. Tiny pieces can break off and travel to the brain, causing strokes. If so there are procedures to remove them. Did you have ultrasounds of your neck in the hospital? You should have.
Do you have atrial fibrillation? Similarly you need follow-up treatment.
Perhaps you have a coagulopathy, an underlying condition that makes you more prone to forming clots. I have a friend who had a massive clot in her 50s that caused a life-threatening pulmonary embolus. This was the first and only sign that she had a coagulopathy, and her neurologist put her on an oral bloodthinner indefinately.
There is a reason you had a stroke, and it's important to preventing future strokes that you know why you had the first one. A neurologist is the person to help you do the research and recommend ways to prevent future strokes.
Not to say therapy and physical therapy will not be helpful. Both can be extremely helpful. But following up with the cause of this stroke is very important, and can help you prevent another one.
posted by citygirl at 1:39 PM on April 14, 2021 [2 favorites]
You may need bloodthinners. Did you get started on them in the hospital? They need monitoring.
You may have plaque in your corotid arteries. Tiny pieces can break off and travel to the brain, causing strokes. If so there are procedures to remove them. Did you have ultrasounds of your neck in the hospital? You should have.
Do you have atrial fibrillation? Similarly you need follow-up treatment.
Perhaps you have a coagulopathy, an underlying condition that makes you more prone to forming clots. I have a friend who had a massive clot in her 50s that caused a life-threatening pulmonary embolus. This was the first and only sign that she had a coagulopathy, and her neurologist put her on an oral bloodthinner indefinately.
There is a reason you had a stroke, and it's important to preventing future strokes that you know why you had the first one. A neurologist is the person to help you do the research and recommend ways to prevent future strokes.
Not to say therapy and physical therapy will not be helpful. Both can be extremely helpful. But following up with the cause of this stroke is very important, and can help you prevent another one.
posted by citygirl at 1:39 PM on April 14, 2021 [2 favorites]
In my mid-40s, I had a brain bleed several years ago that pushed a blood blister against the reading part of the brain. Suddenly, the words on my computer screen suddenly didn't mean anything, and I wasn't able to talk in real sentences. I was taken to the hospital, where they found no tumors and no abnormalities beyond the bleed, and nobody had a really bulletproof "this is what happened" cause.
However, my blood pressure was sky high, as was my thyroid levels. I'd lost about 30 pounds over the course of a couple of years, without trying. As a lifetime low thyroid, fat person with an extended family history of Hashimoto's, I was suddenly diagnosed with Graves Disease and a high thyroid. I realized that I had been anxious and stressed for years. I've since learned that Graves can come on suddenly during times of great stress, and the death of my father is likely what started the process.
I was away from work for two months. My company had a really good insurance concierge system, who helped me get in to see specialists like cardiologists quickly.
Over the next year, my thyoid levels naturally went down to the below normal, crappy-feeling normal. I now have levels checked every six months through my private endocrinologist, who I pay out-of-pocket because she doesn't deal with insurance and she is basically my de facto primary care doctor. She is a miracle and I'm grateful for her every day, and I've cut loose half dozen previous endos who were unable to see beyond testing results and meet me where I am.
I am on a low dose of Armour natural thyroid, which seems to help, and low doses of blood pressure and heart meds, though I'm on the low level for needing them, because I really can't have my brain exploding again. I also made many life changes to reduce my stress, add gentle exercise and reduce my workload, and I do a better job of avoiding assholes, who aren't entitled to my time, no matter who they are. I still sometimes reach for words that just float away, which is not comforting for a writer, but I try to be kind to myself and everyone else. Telecommuting, with dogs for co-workers, seems to help too, as does the lunchtime walk.
posted by answergrape at 5:42 PM on April 15, 2021
However, my blood pressure was sky high, as was my thyroid levels. I'd lost about 30 pounds over the course of a couple of years, without trying. As a lifetime low thyroid, fat person with an extended family history of Hashimoto's, I was suddenly diagnosed with Graves Disease and a high thyroid. I realized that I had been anxious and stressed for years. I've since learned that Graves can come on suddenly during times of great stress, and the death of my father is likely what started the process.
I was away from work for two months. My company had a really good insurance concierge system, who helped me get in to see specialists like cardiologists quickly.
Over the next year, my thyoid levels naturally went down to the below normal, crappy-feeling normal. I now have levels checked every six months through my private endocrinologist, who I pay out-of-pocket because she doesn't deal with insurance and she is basically my de facto primary care doctor. She is a miracle and I'm grateful for her every day, and I've cut loose half dozen previous endos who were unable to see beyond testing results and meet me where I am.
I am on a low dose of Armour natural thyroid, which seems to help, and low doses of blood pressure and heart meds, though I'm on the low level for needing them, because I really can't have my brain exploding again. I also made many life changes to reduce my stress, add gentle exercise and reduce my workload, and I do a better job of avoiding assholes, who aren't entitled to my time, no matter who they are. I still sometimes reach for words that just float away, which is not comforting for a writer, but I try to be kind to myself and everyone else. Telecommuting, with dogs for co-workers, seems to help too, as does the lunchtime walk.
posted by answergrape at 5:42 PM on April 15, 2021
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posted by cgg at 8:51 PM on April 13, 2021 [6 favorites]