Anyone with stroke problems more than 1 yr ago?

[sara12345]

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

[faye504]

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.

[SirBrackalot]

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

[Amcdaniel76]

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

[sara12345]

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

[Lynnjoanne]

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

[sara12345]

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