Aa
Anyone with stroke problems more than 1 yr ago?
Anyone functioning well enough to answer, to discuss your coping with stroke deficits that have remained for a year ago or longer. My stroke was more than 3.5 years ago and I still have some resentment about everything that I can't do. I would like to get a better attitude about it. But either way you are handling it, it would be helpful for me to hear about anyone else who still struggles with problems.
I feel that hearing from someone who is in the same position as I am, would be the best therapy for me.
Thanks in advance to anyone who answers this.
Sara
I feel that hearing from someone who is in the same position as I am, would be the best therapy for me.
Thanks in advance to anyone who answers this.
Sara
Well, I just found your story on my random search. I am sorry for you in this trial. I had some similar symptoms 4 years and I bounced back and came down with more aggravated symptoms a little over a year ago. The first time I went to the doc and he prescribed blood pressure meds. The second time, I was diagnosed with MRI showing countless micro-bleeds. The doc that reported the findings told my wife and I that some people can be sensitive to aspirin, Plavix and ibuprofen and cause bleeds when you have high blood pressure like I had. It is worth a look/see if this is not too late for you. As I have recovered; my therapy has been to fix things, even with my numb right hand.
I read with great interest the comments on this page. I suffered a stroke in Oct 2011. I had classic symptoms...could not say the right words, my right side was numb and not functioning right (I kept dropping things from my hand) and I was bumping into walls. The hospital send me home TWICE despite these classic symptoms saying that I was just having a bad migraine.
It was my family doctor who insisted on an MRI. The MRI clearly showed a stroke. And even then, my doctor had to call the hospital two weeks later to get the results. They didn't even bother to inform him.
I was sent to a neurologist who gave me zero information on possible effects or offered any rehabilitation. He referred me to a neurosurgeon without telling me why.
The neurosurgeon performed more complex tests and told me that I was referred to them to see if the could operate on my carotid artery (at least I now had a cause) After more tests, they determined they could not.
My stroke came out of the blue. I was at low risk. They said that my kind of dissection usually only occurs after a car accident or something, so I was probably just prone to it. They basically just said have a good life and don't fly, because it is likely to happen again.
Some things I got back...some things I didn't. After three years, things are now starting to deteriorate again. I was lucky compared to some. I lost very specific communication skills. I cannot write, but I can print...so I print. I can talk a bit on the phone, but if someone starts asking me questions, I can't find the answers in my brain...so I don't use the phone much...I use email instead. LIke many others, I just try to cope with what I have and accept it. Yes if the hospital had done their job and given me the anti-clot medicine the first time, I would not be where I am today...but what's done is done and I can't change that.
I admire those of you who have a much better attitude than me, but to those who don't...at least you know there are others that became grumpy old men after a stroke...so you are not alone :)
It was my family doctor who insisted on an MRI. The MRI clearly showed a stroke. And even then, my doctor had to call the hospital two weeks later to get the results. They didn't even bother to inform him.
I was sent to a neurologist who gave me zero information on possible effects or offered any rehabilitation. He referred me to a neurosurgeon without telling me why.
The neurosurgeon performed more complex tests and told me that I was referred to them to see if the could operate on my carotid artery (at least I now had a cause) After more tests, they determined they could not.
My stroke came out of the blue. I was at low risk. They said that my kind of dissection usually only occurs after a car accident or something, so I was probably just prone to it. They basically just said have a good life and don't fly, because it is likely to happen again.
Some things I got back...some things I didn't. After three years, things are now starting to deteriorate again. I was lucky compared to some. I lost very specific communication skills. I cannot write, but I can print...so I print. I can talk a bit on the phone, but if someone starts asking me questions, I can't find the answers in my brain...so I don't use the phone much...I use email instead. LIke many others, I just try to cope with what I have and accept it. Yes if the hospital had done their job and given me the anti-clot medicine the first time, I would not be where I am today...but what's done is done and I can't change that.
I admire those of you who have a much better attitude than me, but to those who don't...at least you know there are others that became grumpy old men after a stroke...so you are not alone :)
Alicia, When I read about your brainstem stroke- ,I am sorry you have endured, but, I,too,had brain stem stroke- doc, wont put it down as diag. Insurance co. for work, stop check, sending me back to work at Walmart, but, I don't feel I can. No one sees inside our brain-what they see on outside ,especially for those who haven't been in our way- neurologist put brain stem abnormality, small vessel disease, MRA head-AICA replaces PICA- - I have a lot of signs- but, the worse is headaches, and left eye pressure-another doc said- stress/anxiety- slurr speech, blurry vision, left eye droop- I have been on short term-but,I am not the same- and no meds- recently went to VA, and had major Bacterial Infection, and I am borderline Heart Disease,I want to be checked for MS, because,I had several white lesions on brain, with neuro symptoms wax & wan-Sorry for the mess with words-brain problems are the worse for me-I take Glaucoma drops, two different meds a day-I am so glad to be able to read other stories, and I know I am not alone, God Bless-The Computer- Take care, lol,your friend,Tiger,Sheree
Yes, I had my stroke almost 6 years ago at age 58. The neurologist told me that if my circulation hadn't been so good together with having the stroke as young as I was, that I would have ended up paralyzed and not able to speak. My severe 24/7 migraines are mostly under control with a lot of treatments, but I need at least 12 hours of sleep a night and can't do much in a day or the migraines get terrible. That's my biggest disability.
From the stroke I also got myoclonus (involuntary jerking), now treated with medication, high blood pressure (treated with med), kidney failure which has not been a problem yet, cannot hand write because my dominant hand never came back all the way. Am slightly disabled on my right side, but PT helped it a lot. Also 5 years later after my stroke, I suddenly lost my true voice and also got severe clenching of my toes, caused by spasticity from my stroke. Can you believe that that happened so long after my stroke??
I am very fortunate that I didn't suffer so much worse. But the hardships from my stroke plus other pain conditions can be trying, but I try to focus on what I do have to be grateful in my life.
If you didn't have physical therapy, you could still benefit from it at this point. I got more physical therapy a year later after my stroke and gained more from it.
So keep your positive attitude. You are remarkable.
Keep the faith. Sara
From the stroke I also got myoclonus (involuntary jerking), now treated with medication, high blood pressure (treated with med), kidney failure which has not been a problem yet, cannot hand write because my dominant hand never came back all the way. Am slightly disabled on my right side, but PT helped it a lot. Also 5 years later after my stroke, I suddenly lost my true voice and also got severe clenching of my toes, caused by spasticity from my stroke. Can you believe that that happened so long after my stroke??
I am very fortunate that I didn't suffer so much worse. But the hardships from my stroke plus other pain conditions can be trying, but I try to focus on what I do have to be grateful in my life.
If you didn't have physical therapy, you could still benefit from it at this point. I got more physical therapy a year later after my stroke and gained more from it.
So keep your positive attitude. You are remarkable.
Keep the faith. Sara
hi Sara, how are you doing, how long ago did you have your stroke, I am curious to hear your accomplishments, to give me hope, I am a little over 2 years, had my stroke at 49, it is still a struggle, but I try to remain positive. my hand is not working yet, I can lift my arm up to a certain point, but my fingers are stiff and have no dexterity in them yet, also my leg is heavy, but I lift it up when I walk, I do not drag my foot, please reply to me because i think you had your stroke before me, just want to know your progress, thank you.
What an inspiring message from you. With your surgery, you could have died, or had paralysis or not been able to speak--right? But it sounds like you had it a lot better than that. I sincerely appreciate your good attitude. Keep it up.
Yes you were young, but people younger than you have strokes. Mine was at age 56 and it was a major one.
what ages are some of you when you had your stroke if you dont mind i was 29 my first big one then mini's came after and to my knowledge it's been least 3 years since I've had any.
i had a stroke in 1994 an several mini strokes. i understand your being frustrated healing takes a long time. the best advice i can give is from my own experience. trial and error after i took matters into my own hands. the first mistake was going on a low fat diet the dr recommended. i died an 2 hours later they finely got me back to stable an put me in ccu. .. memory long and short term memory was effected was over a year before i learned what the potato masher was for in my kitchen drawer didn't know to use it or what it was for an my family yelled at me for repeatedly asking same questions over an over so i stopped asking what things was or how to use. i watched to learn and paralyses didn't last i was walking when i left the hospital... my best advice is to think positive and believe your body knows how to heal it's self same as if it was cut on the outside it heals it will do the same inside. give it what it needs in nutrition an you will see improvements my recent use of saturated fats incredible my memory is improving and my joints feel better i dont have the body pain like i did an all this thanks to saturated fats. this dont mean eat lard like ice cream... lol ... you can get these fats from meats coconut oil avacados so add your butter to ya veggies an so on think an cook like grandma... mine put bacon an pork fat an ham hocks in beans an veggies when she cooked them. gramps had bacon an eggs or sausage every morning for breakfast drank raw whole cows milk had a shot of whiskey before bed each night an a small slice of cheese then went to bed. they always had a garden to eat from luckily i asked one night why he ate the cheese he told me to protect his teeth. recently i learned about oil pooling in the mouth to prevent an cure cavities i guess he knew something bout it that didn't get passed on in main stream health practices. do your best good foods cant be beat add lots of fruits an veggies in smoothies.. the only supplement i'm on is cellfood DNA RNA its the one that regenerates healthy cells. also i did post a summery of my stroke in a journal on my profile if you want to read or have questions you need a good few years to repair the damages but healing is something you can achieve over the years. cellfood research shows it ups the oxygen levels in the blood as well it's 78 minerals enzymes an amino acids there's several formulas to choose from that one also is cell repair is why i chose it. to me the less than $50 price for the month is cheap for the health benefits Ive received. research is easy now you have a subject.. so research natural healing try things log how you feel after a few months some changes happen fast in days some is over time even years so be patient with yourself you will get well.. eat well grow a garden if even just a few pots of salad greens or spinach greens loaded with chlorophyll excellent nutrition. hope this helps.
george never refer to yourself as a stroke victim we are stroke survivors, did you have a crainotoctomy to relief the pressure off your brain, i had one two years ago now, but the site on my head still hurts, does yours hurt, please let me know.
hi sara i had my stroke back in january 2012, like george i had pressure on my brain, had the surgery which still hurts up to this day, i have made lots of improvements, but it is still hard, we just have to keep on pushing, knowing it wont always be like this, even this sickness has an expriation date, it will end, just hold on while there is life there is hope, everyday that we wake up we are closer to our healing.
You sound like you've got a great attitude and are coping very well. If you're like me, which you may not be, you may have other medical problems that will come about in the years to come. So don't give up on any help out there such as physical therapy or a neurologist if you can't find a way to deal with it. Wish you well. Sara
Hi everyone
I am 37 year old female who also suffered a brain stem stroke.
I was checked thoroughly and was my lifestyle did not cause this. My birth control Yasmin is what caused it.
I suffer the same issues as Alicia and luke.
It's very painful attacks I have and the only thing that seems to relieve them is ice packs. So when I feel the onset of an attack starting I out one on the back of my neck and another one on the top of my head. I also will shake off any limb that goes numb. I force this on me even though my body says no.
I have yet to see a neuro doctor but I believe the only thing that will help me is learning what I can do for myself to help me.
So far the ice helps and plenty of fluids. When my arms fall asleep I often soak my hands in hot water so they move again. Then I work with my other parts of my body also.
I'm confused at times and emotionally drained but I continue to tell myself
Mind over Matter.
It's the only way I can deal with this daily.
Stay strong cause will fight through this!
Lynn
I am 37 year old female who also suffered a brain stem stroke.
I was checked thoroughly and was my lifestyle did not cause this. My birth control Yasmin is what caused it.
I suffer the same issues as Alicia and luke.
It's very painful attacks I have and the only thing that seems to relieve them is ice packs. So when I feel the onset of an attack starting I out one on the back of my neck and another one on the top of my head. I also will shake off any limb that goes numb. I force this on me even though my body says no.
I have yet to see a neuro doctor but I believe the only thing that will help me is learning what I can do for myself to help me.
So far the ice helps and plenty of fluids. When my arms fall asleep I often soak my hands in hot water so they move again. Then I work with my other parts of my body also.
I'm confused at times and emotionally drained but I continue to tell myself
Mind over Matter.
It's the only way I can deal with this daily.
Stay strong cause will fight through this!
Lynn
Alicia, It strains my imagination to think that twice you sought medical attention and were not immediately diagnosed with a stroke--especially the 2nd time. Didn't they do a CT scan or an MRI? Or is that not a way to diagnose the brain stem stroke which I don't know much about. Why did it take 3 days to find out? Although for most strokes you need to be diagnosed within 3 hours to get the tPa which takes care of most of the stroke disabilities. I don't know if with your stroke that would have been possible.
I had a carotid artery stroke for no reason at all at a relatively young age as strokes go. Even though I am very tuned in to my body, I had no idea that anything was wrong with me even though I knew that I had waked up paralyzed and could barely talk. I heard gibberish coming out of my mouth at one point. The night before I saw a tiny red line in my peripheral vision (not a sign of stroke), and I looked up on the internet to find out if I should go to the ER. Finding nothing I went to bed. That's how tuned in to my body I was. Yes I knew the signs of a stroke. But my judgment was impaired from the stroke which can happen.
You are very early on in your recovery and will make a fair amount of progress in the next few months. But recovery keeps happening little by little as the years go by. I have continued to recover over the 5 years since I had my major stroke. But then little surprises have happened over 3 years and over 5 years later, which are attributed to my stroke. That is losing my voice, not able to swallow hardly, and severely clenched up toes. Speech therapy and Botox have helped these new problems.
I got severe 24/7 migraines caused by my stroke which has been the most disabling effect of my stroke on top of limited use of my r. arm, leg and hand. But my speech is all the way back to normal when I could barely come up with words for months and still had difficulty for years afterwards. I have a whole bunch of other medical problems which have also come up from my stroke.
After I treated my severe depression (described below) I still had some resentment and grief over my limited life until I met a woman on-line who has vascular dementia which means that in her 40s she has continuing small strokes which are robbing her of even her memories. And continued physical problems from it. No cure for it. And she wrote that she was grateful for every day that she had with her children. That totally changed my attitude.
You remind me of her. Such a good attitude on your part.
I got severely depressed a couple years ago. I have needed at least 12 hours of sleep a night of my migraines get severe. Plus I can't do much in a day or they get severe, and sometimes they get severe for no reason at all. I couldn't do my work without getting severe migraines. A trip that I had looked forward to for a long time sent me to bed for the whole trip including going to the ER from the pain. I had no life at all. If you get to that point, which it sounds like you are coping very well, take a tip from me. My doctor said to increase my anti-depressant and to get therapy. I told her that no drug could possibly help something so situational. I didn't have time for therapy because I needed to visit my mother in hospice almost every day. My choice of course. A month later I still had the same terrible life, but the depression was completely gone.
Now my migraines are far better from many treatments, but still need at least 12 hours of sleep a night. Still have a lot of disabilities. But now together with my new attitude and my medication, I am truly happy for what I do have in my life--my husband, our land, and my cats. And I am able to drive and do limited errands.
You will keep getting better. Just work on your PT with diligence. And I didn't hear anything about you getting speech therapy which I had 2x a week for months. Write back to me about anything that crosses your mind. I think that you are truly amazing.
Sara
I had a carotid artery stroke for no reason at all at a relatively young age as strokes go. Even though I am very tuned in to my body, I had no idea that anything was wrong with me even though I knew that I had waked up paralyzed and could barely talk. I heard gibberish coming out of my mouth at one point. The night before I saw a tiny red line in my peripheral vision (not a sign of stroke), and I looked up on the internet to find out if I should go to the ER. Finding nothing I went to bed. That's how tuned in to my body I was. Yes I knew the signs of a stroke. But my judgment was impaired from the stroke which can happen.
You are very early on in your recovery and will make a fair amount of progress in the next few months. But recovery keeps happening little by little as the years go by. I have continued to recover over the 5 years since I had my major stroke. But then little surprises have happened over 3 years and over 5 years later, which are attributed to my stroke. That is losing my voice, not able to swallow hardly, and severely clenched up toes. Speech therapy and Botox have helped these new problems.
I got severe 24/7 migraines caused by my stroke which has been the most disabling effect of my stroke on top of limited use of my r. arm, leg and hand. But my speech is all the way back to normal when I could barely come up with words for months and still had difficulty for years afterwards. I have a whole bunch of other medical problems which have also come up from my stroke.
After I treated my severe depression (described below) I still had some resentment and grief over my limited life until I met a woman on-line who has vascular dementia which means that in her 40s she has continuing small strokes which are robbing her of even her memories. And continued physical problems from it. No cure for it. And she wrote that she was grateful for every day that she had with her children. That totally changed my attitude.
You remind me of her. Such a good attitude on your part.
I got severely depressed a couple years ago. I have needed at least 12 hours of sleep a night of my migraines get severe. Plus I can't do much in a day or they get severe, and sometimes they get severe for no reason at all. I couldn't do my work without getting severe migraines. A trip that I had looked forward to for a long time sent me to bed for the whole trip including going to the ER from the pain. I had no life at all. If you get to that point, which it sounds like you are coping very well, take a tip from me. My doctor said to increase my anti-depressant and to get therapy. I told her that no drug could possibly help something so situational. I didn't have time for therapy because I needed to visit my mother in hospice almost every day. My choice of course. A month later I still had the same terrible life, but the depression was completely gone.
Now my migraines are far better from many treatments, but still need at least 12 hours of sleep a night. Still have a lot of disabilities. But now together with my new attitude and my medication, I am truly happy for what I do have in my life--my husband, our land, and my cats. And I am able to drive and do limited errands.
You will keep getting better. Just work on your PT with diligence. And I didn't hear anything about you getting speech therapy which I had 2x a week for months. Write back to me about anything that crosses your mind. I think that you are truly amazing.
Sara
So, I am currently 4 mo out of a severe brain stem stroke. I'm not ashamed to admit that I was very stupid about the whole thing. I am a busy 37 yr old mother, started to feel strange, numbness, nausea, slurred speech, etc, off and on for 3 days, then poof it was gone! It came back 3 days later. I kept telling my husband I thought I had pinched a nerve in my neck, stupid I know! So when syptoms return I brushed them off, got ready for my day, (difficult), and made a 3 hr car trip to watch my sons baseball game. I continued to get worse throughout the day. Still convinced I'm fine. When I get back, my husband goes on web md, and proceeds to have a massive freak out!
I was preparing for another ball game my younger son was playing that eve and my husband refused and immediately took me to ER. They told me no stroke, see your Dr. I left and went to game, came home, went to bed. I woke 5 hrs later, couldn't move my rt arm or leg, and family could hardly understand me, my face had fallen, the whole nine. Dr tells me maybe MS, or migraine equivalence. Really didn't believe I'd had a stroke. Please know my dr is amazing and it made sense. Started testing immediately. It was 3 days later, July 3rd, after hrs I get a call from dr telling me the bad news. Being a holiday, he instructed my husband to keep me calm, cool, and settled till after. I won't say I complied very well.
Within 2 wks I was almost back to normal, then a wk later, it hit me again. Slurring, paralysis, everything. But worse. Thought I was having another stroke. Back to the ER I go, they tried to send me home again, even though it was their hospital MRI guy (sorry loss for word) that diagnosed me. Finally, a Nero on call come in and admits me. 24 hrs, 24 vials of blood, and every test known to man, and they tell me yes you had a severe brain stem stroke, the reason for the 2nd set back is called stroke progression, and they can find no reason for me to have had it. No block, bleed, narrowing, nothing! It happens about 20% in patience my age, medical mystery! Yay! Not.
I have very limited use of leg, arm is about 50%, as is hand. My face is fine, speech is good except when I get tired I slurr a little, but everything is worse when I'm tired. I can't think of the words to use often, transpose them often, and just generally say things wrong. My son youngestgoes to virtual school, and I tried to help with math yesterday and learned I can't divide anymore, I have no control of my body tempature, don't ask me to remember anything longer than 12 hrs, blah, blah blah! The list goes on. Internally and works its way out
I was a very active involved mother, school, community, sports. I did it all. Now I can't get off the couch to go to the bathroom without my husband or sons asking what I'm doing. It's from love I know, but is making me insane! They won't let me out of sight. And if not them, one of the high school kids or friends are here. I love them all, but can slowly feel my soul leaving my body as I lie here!
I have PT 3 days a wk, do a lot of stuff at home to rehab, and play a lot of word, memory, or coordination games on my iPad. I have no control of my emotions. My arm and leg spaz out all the time, pain is constant. Tomorrow I'm botoxing my calf to help my leg, fingers crossed.
So about a wk ago, sitting here feeling miserable, I decided that I could let this kill me off mentally or physically, or I could take what I've got and be happy I'm alive. I don't know about normal strokes, but with mine there's only a 15% chance of surviving. And I did, damn it! It didn't kill me June 25 , why let it kill me now? My youngest is 13, oldest 18. I've got a lot of games, homework and hugs left before I'm done with them, and I'm going to take every second of it! I'm not even 40! So I've decided pain and exhaustion can bring it! Pain is nothing new in my life, I've had several surgeries, and have been on a duragisic patch for 3 yrs anyway, so nothing new! So what I'm different, so what I'll never be the same, even if I get better, who cares!? My family loves me whether I say the wrong or right word, the kids still all come to me for advice, they don't love me less because I use a walker now, or can't write. I think they may all love me more.
My point is, and I know I'm early into recovery compared, that I'm alive. And that's enough! That's all I need besides my family. I get embarrassed, say stupid stuff, and cry in pain, but at least I'm here to do so! If you've had a stroke, remember no matter how bad, someone somewhere had one too, and is worse off, might not even be around to tell their stories to help others survive. Please don't think I'm one of those happy all the time optimists either, I'm not! I'm a cranky *****, don't like most people, and am generally a pessimist.
It has taken forever to type this, and try to make it read understandable. I had some help from an angel of a 13 yr old, but if it helps one person to have a better outlook, then it was worth it! And if it doesn't help anyone else, it helped to remind me!
I am happy to discuss anything with anyone. Pain, syptoms, anger, frustration, just to be an ear, for anyone who wants or needs.
Alicia M
I was preparing for another ball game my younger son was playing that eve and my husband refused and immediately took me to ER. They told me no stroke, see your Dr. I left and went to game, came home, went to bed. I woke 5 hrs later, couldn't move my rt arm or leg, and family could hardly understand me, my face had fallen, the whole nine. Dr tells me maybe MS, or migraine equivalence. Really didn't believe I'd had a stroke. Please know my dr is amazing and it made sense. Started testing immediately. It was 3 days later, July 3rd, after hrs I get a call from dr telling me the bad news. Being a holiday, he instructed my husband to keep me calm, cool, and settled till after. I won't say I complied very well.
Within 2 wks I was almost back to normal, then a wk later, it hit me again. Slurring, paralysis, everything. But worse. Thought I was having another stroke. Back to the ER I go, they tried to send me home again, even though it was their hospital MRI guy (sorry loss for word) that diagnosed me. Finally, a Nero on call come in and admits me. 24 hrs, 24 vials of blood, and every test known to man, and they tell me yes you had a severe brain stem stroke, the reason for the 2nd set back is called stroke progression, and they can find no reason for me to have had it. No block, bleed, narrowing, nothing! It happens about 20% in patience my age, medical mystery! Yay! Not.
I have very limited use of leg, arm is about 50%, as is hand. My face is fine, speech is good except when I get tired I slurr a little, but everything is worse when I'm tired. I can't think of the words to use often, transpose them often, and just generally say things wrong. My son youngestgoes to virtual school, and I tried to help with math yesterday and learned I can't divide anymore, I have no control of my body tempature, don't ask me to remember anything longer than 12 hrs, blah, blah blah! The list goes on. Internally and works its way out
I was a very active involved mother, school, community, sports. I did it all. Now I can't get off the couch to go to the bathroom without my husband or sons asking what I'm doing. It's from love I know, but is making me insane! They won't let me out of sight. And if not them, one of the high school kids or friends are here. I love them all, but can slowly feel my soul leaving my body as I lie here!
I have PT 3 days a wk, do a lot of stuff at home to rehab, and play a lot of word, memory, or coordination games on my iPad. I have no control of my emotions. My arm and leg spaz out all the time, pain is constant. Tomorrow I'm botoxing my calf to help my leg, fingers crossed.
So about a wk ago, sitting here feeling miserable, I decided that I could let this kill me off mentally or physically, or I could take what I've got and be happy I'm alive. I don't know about normal strokes, but with mine there's only a 15% chance of surviving. And I did, damn it! It didn't kill me June 25 , why let it kill me now? My youngest is 13, oldest 18. I've got a lot of games, homework and hugs left before I'm done with them, and I'm going to take every second of it! I'm not even 40! So I've decided pain and exhaustion can bring it! Pain is nothing new in my life, I've had several surgeries, and have been on a duragisic patch for 3 yrs anyway, so nothing new! So what I'm different, so what I'll never be the same, even if I get better, who cares!? My family loves me whether I say the wrong or right word, the kids still all come to me for advice, they don't love me less because I use a walker now, or can't write. I think they may all love me more.
My point is, and I know I'm early into recovery compared, that I'm alive. And that's enough! That's all I need besides my family. I get embarrassed, say stupid stuff, and cry in pain, but at least I'm here to do so! If you've had a stroke, remember no matter how bad, someone somewhere had one too, and is worse off, might not even be around to tell their stories to help others survive. Please don't think I'm one of those happy all the time optimists either, I'm not! I'm a cranky *****, don't like most people, and am generally a pessimist.
It has taken forever to type this, and try to make it read understandable. I had some help from an angel of a 13 yr old, but if it helps one person to have a better outlook, then it was worth it! And if it doesn't help anyone else, it helped to remind me!
I am happy to discuss anything with anyone. Pain, syptoms, anger, frustration, just to be an ear, for anyone who wants or needs.
Alicia M
I hope things get better for you. Wishing you well from the Upstate of South Carolina. Thoughts and prayers my friend, thoughts and prayers.
Gary
Gary
So sorry you have so much pain. Can you please describe it for me as I dont understand it. My pain isnt really normal type pain. I've had 5 back pains and that pain I can relate to. Its hard to understand my stroke pain which is in my right side face and hand. Cold . numbing , tingling, intense like I'm stuck in a deep freezer. My ex Pt says she hasnt ever has a client with my effects. I quit going to Pt after I had to be hosp again on 2/16/13 thought another stroke, but after 3 days in hosp and 2 mri"s andothe ct scan said no . Just residulal symptoms which am told will get worseer before better. what a laugh!! Lyrica wasnt working so quit. No meds so far helps with the sensory cold except sleep and cover my body up !! I could be worse.
Luke,
I am still very concerned about you. Have you tried any of the stronger pain remedies that I mentioned above? And are you on an anti-depressant? If you're still feeling very depressed, get the doctor to either raise it or change it. Please write back to me. There is hope for you with better pain relief. I'm hoping and praying for the best for you.
Sara
I am still very concerned about you. Have you tried any of the stronger pain remedies that I mentioned above? And are you on an anti-depressant? If you're still feeling very depressed, get the doctor to either raise it or change it. Please write back to me. There is hope for you with better pain relief. I'm hoping and praying for the best for you.
Sara
So sorry that I didn't see your response way back. Sorry not to have gotten back to you sooner. I've been especially disabled with bad migraines for over a month. In bed mostly.
It doesn't sound like you have tried the Botox injections. Why not? Are you resistant to injections? But if they help, it could be great for you. I was told by one of my one-time doctors to keep Botox in mind if I got pain in my legs, because Botox can help it. And she said that the pain can show up years later.
A 24/7 opiate patch has helped me some. It's highly regulated and is called a Butrans patch. It comes in 5, 10 and higher mcg levels. I'm now on 15 mcg. Or what about some other pain killers?. You probably need to go to a pain management doctor to get those higher level pain medications, because regular doctors are afraid to give them because of the toughening regulations. Don't give up with getting help and I will check this site for your responses. You need to be brutally honest and descriptive with your doctors about your pain. Only then will you get something that will help your pain. Forget about meditations and Tai Chi. What a joke for someone in so much pain. Please hang in there. There is help with stronger pain killers and the Botox injections.
It doesn't sound like you have tried the Botox injections. Why not? Are you resistant to injections? But if they help, it could be great for you. I was told by one of my one-time doctors to keep Botox in mind if I got pain in my legs, because Botox can help it. And she said that the pain can show up years later.
A 24/7 opiate patch has helped me some. It's highly regulated and is called a Butrans patch. It comes in 5, 10 and higher mcg levels. I'm now on 15 mcg. Or what about some other pain killers?. You probably need to go to a pain management doctor to get those higher level pain medications, because regular doctors are afraid to give them because of the toughening regulations. Don't give up with getting help and I will check this site for your responses. You need to be brutally honest and descriptive with your doctors about your pain. Only then will you get something that will help your pain. Forget about meditations and Tai Chi. What a joke for someone in so much pain. Please hang in there. There is help with stronger pain killers and the Botox injections.
That last paragraph is so true. I have a constant 8-9 aching burn in my right leg (Starts about 6 inches above my knee, and surrounds my leg towards and around my foot. Very hard to walk, been vomitting as of late from the pain)
and every 4 to 8 minutes I get shooting pain down my leg. closest way to describe it would be, it feels like all the bones in my leg are decaying, and someone is sticking metal probes right on the nerves... It is so painfull that I dont even bother to give it a number. I have a constant 6-8 on my right arm. The sensation is a little different but just the same it hurts non stop. Feels like Ive got my hand in a light socket and getting zapped 24/7. The shooting pains are pretty much same sensation though
I have tried everything that is put in front of me, from Lyrica, to morphine, from acupuncture to low impact tai chi, and relaxation meditations. Feels like Im losing grip on my life....it is so depressing.. I was in such better spirits even 6 months ago, but have to quit work, and limping around just to go from one room of my house to another...not being able to play with my Son. I cant even handle the touch from my wife on the effected limbs.
Basically right now, Im white knuckling it, just trying to hang on long enough for somthing to work, and remaining hopfull....That hopfullness is leaving me...its sand through my fingers. I try my best to hang on to it, but the harder I grip it, the more that I lose between my fingers. Not even 30 yet, and I feel old, useless, and pathetic....
and every 4 to 8 minutes I get shooting pain down my leg. closest way to describe it would be, it feels like all the bones in my leg are decaying, and someone is sticking metal probes right on the nerves... It is so painfull that I dont even bother to give it a number. I have a constant 6-8 on my right arm. The sensation is a little different but just the same it hurts non stop. Feels like Ive got my hand in a light socket and getting zapped 24/7. The shooting pains are pretty much same sensation though
I have tried everything that is put in front of me, from Lyrica, to morphine, from acupuncture to low impact tai chi, and relaxation meditations. Feels like Im losing grip on my life....it is so depressing.. I was in such better spirits even 6 months ago, but have to quit work, and limping around just to go from one room of my house to another...not being able to play with my Son. I cant even handle the touch from my wife on the effected limbs.
Basically right now, Im white knuckling it, just trying to hang on long enough for somthing to work, and remaining hopfull....That hopfullness is leaving me...its sand through my fingers. I try my best to hang on to it, but the harder I grip it, the more that I lose between my fingers. Not even 30 yet, and I feel old, useless, and pathetic....
Hi Luke,
I'm so sorry to hear about your terrible pain. Could you describe which areas are in pain? If in your legs, does it feel like severe cramping? If so, have you tried Botox injections? And if you have migraines, again have you tried Botox which has helped my migraines a lot, but only for about 5 to 6 weeks out of 9 weeks. But twice in the last 6 month+, the injections haven't worked well after being a Godsend for the 2 and half years previously. But they could be greatly helpful to you.
What about nerve block or trigger point injections? The pills have been the least helpful for me, compared to the treatments above. I still have terrible leg pain that wakes me up every 1 1/2 hour to 2 hours all night long. And I still need at least 12 hours of sleep a night or my migraines get far worse.
On Monday, I get a spinal tap, which I probably should have had 4 years ago when I had my stroke and the intense migraines started. I have also had other disabilities occur attributed to my stroke 3 years after my stroke. It's now been over 4 years since my stroke. The specialist says that he often sees the disabilitites occur years later after a stroke. So I can believe that your pain has gotten so much worse with time.
I'm glad that you have love in your life. I do too. But when my pain was so terrible and I found my life extremely limited, I went into a severe depression. My husband and doctor thought that I was suicidal even though I told them that I wasn't. But with an increase in my Effexor, I came out of the depression completely within a month. Still had the same horrible life, but that anti-depressant has helped me to accept my very limited life and pain.
But it also took me hearing from another woman who had a disease with continuous strokes since age 43 and was losing memory with every stroke. And she was going to die within the next 3 years with no memory of anything. She had such great love and devotion to her 2 daughters. It made me reconsider my own problems better than any psychological therapy was doing.
Many people do commit suicide, not being able to deal with their chronic pain. So to you and everyone else with such pain, I give you my heartfelt compassion. Let me know more about where your pain is and what non-medication treatments you have tried. I look forward to hearing from you.
I'm so sorry to hear about your terrible pain. Could you describe which areas are in pain? If in your legs, does it feel like severe cramping? If so, have you tried Botox injections? And if you have migraines, again have you tried Botox which has helped my migraines a lot, but only for about 5 to 6 weeks out of 9 weeks. But twice in the last 6 month+, the injections haven't worked well after being a Godsend for the 2 and half years previously. But they could be greatly helpful to you.
What about nerve block or trigger point injections? The pills have been the least helpful for me, compared to the treatments above. I still have terrible leg pain that wakes me up every 1 1/2 hour to 2 hours all night long. And I still need at least 12 hours of sleep a night or my migraines get far worse.
On Monday, I get a spinal tap, which I probably should have had 4 years ago when I had my stroke and the intense migraines started. I have also had other disabilities occur attributed to my stroke 3 years after my stroke. It's now been over 4 years since my stroke. The specialist says that he often sees the disabilitites occur years later after a stroke. So I can believe that your pain has gotten so much worse with time.
I'm glad that you have love in your life. I do too. But when my pain was so terrible and I found my life extremely limited, I went into a severe depression. My husband and doctor thought that I was suicidal even though I told them that I wasn't. But with an increase in my Effexor, I came out of the depression completely within a month. Still had the same horrible life, but that anti-depressant has helped me to accept my very limited life and pain.
But it also took me hearing from another woman who had a disease with continuous strokes since age 43 and was losing memory with every stroke. And she was going to die within the next 3 years with no memory of anything. She had such great love and devotion to her 2 daughters. It made me reconsider my own problems better than any psychological therapy was doing.
Many people do commit suicide, not being able to deal with their chronic pain. So to you and everyone else with such pain, I give you my heartfelt compassion. Let me know more about where your pain is and what non-medication treatments you have tried. I look forward to hearing from you.
Im not sure if you will check this reply or not, but Im hopfull you will. I finally found out what was/is wrong with me. I have been diagnosed with Post stroke pain syndrome. The condition is constanly growing, pain wise, and the effected areas. I am happy that atleast I was able to talk to a doctor that has my health and welfare in his heart. We are trying anything and everything that we can think of. There has been nothing so far that gives me any releif what so ever, but from what I read the diagnosis for such pain is the hardest part. I have tried lyrica, but I suffer from some pretty serious/life threatening side effects, so thats a no go. Currently I am on an anti-depressent, which while it helps me sleep better, does nothing for the pain. I try my best to remain positive, but its been almost a year that Ive been living with this pain, with no relief in sight.
I count my blessings every night when I lay my head down, and every morning when my eyes open. I have a lot of people that love me, and that I love. I have to consider that those things are beyond medication, and treatment. No doctor can prescribe love, and no pharmacy can fill it.
I live every second, of every minute, of every hour, of every day, of every week, of every month with horrible pain (constant 8-10, with shooting pains that brings me to tears), yet still feel myself to be lucky. To love, and to be loved are, in my opinion, the most prescious things that any person can attain in this life.
I hope that you (Sara) and anyone else reading this, that this day has been a good one, and your sleep is enjoyable and restfull. Be good to your self, be good to those who are good to you, and pray for those whose are not good to you.
Sincerely
Luke M.
I count my blessings every night when I lay my head down, and every morning when my eyes open. I have a lot of people that love me, and that I love. I have to consider that those things are beyond medication, and treatment. No doctor can prescribe love, and no pharmacy can fill it.
I live every second, of every minute, of every hour, of every day, of every week, of every month with horrible pain (constant 8-10, with shooting pains that brings me to tears), yet still feel myself to be lucky. To love, and to be loved are, in my opinion, the most prescious things that any person can attain in this life.
I hope that you (Sara) and anyone else reading this, that this day has been a good one, and your sleep is enjoyable and restfull. Be good to your self, be good to those who are good to you, and pray for those whose are not good to you.
Sincerely
Luke M.
Hi Luke,
You are just plain inspiring. I can understand how your little boy, Jude, is making you so whole and loving. What a great gift for you.
How could anyone think that you had a broken back?
It is helpful to know that others also feel like others can't really "GET" what is going on with us. It is such an abrupt change that affects so much.
But Luke, I know that you can still get better. See a doctor about either getting some more physical therapy or the Botox injections for your increased pain. Just like my voice failing several years after my stroke which the gap in time is commonly seen from a stroke. And I had difficulty swallowing since my stroke and just found out that a simple speech therapy exercise could fix it. So there are more solutions for you as well. Is health insurance a problem for you? Please let me know what you decide to do.
Sara
You are just plain inspiring. I can understand how your little boy, Jude, is making you so whole and loving. What a great gift for you.
How could anyone think that you had a broken back?
It is helpful to know that others also feel like others can't really "GET" what is going on with us. It is such an abrupt change that affects so much.
But Luke, I know that you can still get better. See a doctor about either getting some more physical therapy or the Botox injections for your increased pain. Just like my voice failing several years after my stroke which the gap in time is commonly seen from a stroke. And I had difficulty swallowing since my stroke and just found out that a simple speech therapy exercise could fix it. So there are more solutions for you as well. Is health insurance a problem for you? Please let me know what you decide to do.
Sara
So sorry that you are still paralyzed. Your experience is really appalling that no one did any tests or give you any medication. You seem to clearly be blaming them for that. So do you think that the tPa medication that takes away most of your stroke effects would have helped you? If so, I would sue the hospital that just let you lie there. Have you thought of that? If you have a good case, a law firm would take your case and not charge you anything, except they take a good percentage of the winning amount. Or you could pay a lawyer to fight your case and take all the winning amount. If it is indeed the hospital's fault that you are paralyzed, I wouldn't hesitate. There also is help for others that the same nightmare won't likely get repeated.
And you say that you feel you CEASE to exist with the medical people. You don't mention any other disabilities besides the paralysis. Was physical therapy ever an option for you? Did they put you on blood thinners? Did they do any follow-up with tests to see how your stroke damage was healing?
By the way, what is the ASU? Do you live in the U.S?
Don't think that I am so much further along the path than you are. Don't think that I am any more mobile than you are with your paralysis. I can barely do anything without my migraines getting terrible. For example, I can't travel in a car more than 2 hours. I often am destroyed with my migraines by the time I get to the check out counter at a store. I need at least 12 hours a night or my migraines get terrible. (I see above that I stated 24 hours a night--must be a stroke slip.) So I have very little time to do anything. Plus I have pain on the side of my body that was paralyzed at the time of the stroke. I wake up constantly all night long with the pain. There's nothing that I can fault the medical system with my problems, but they are there.
I hope that you will consider my suggestion of a lawsuit if the medical place did neglect you.
I really feel for you on your yacht for your retirement and then having all this happen. A stroke often stops your life as you once knew it, as it did for me and you and others who have responded to my posting.
Keep in touch.
Sara
And you say that you feel you CEASE to exist with the medical people. You don't mention any other disabilities besides the paralysis. Was physical therapy ever an option for you? Did they put you on blood thinners? Did they do any follow-up with tests to see how your stroke damage was healing?
By the way, what is the ASU? Do you live in the U.S?
Don't think that I am so much further along the path than you are. Don't think that I am any more mobile than you are with your paralysis. I can barely do anything without my migraines getting terrible. For example, I can't travel in a car more than 2 hours. I often am destroyed with my migraines by the time I get to the check out counter at a store. I need at least 12 hours a night or my migraines get terrible. (I see above that I stated 24 hours a night--must be a stroke slip.) So I have very little time to do anything. Plus I have pain on the side of my body that was paralyzed at the time of the stroke. I wake up constantly all night long with the pain. There's nothing that I can fault the medical system with my problems, but they are there.
I hope that you will consider my suggestion of a lawsuit if the medical place did neglect you.
I really feel for you on your yacht for your retirement and then having all this happen. A stroke often stops your life as you once knew it, as it did for me and you and others who have responded to my posting.
Keep in touch.
Sara
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