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

[Ofevilorigin]

Hello Sara,
               Yes I had a carotid artery dissection stroke.  Its kind of...funny?(cant think of a better, describing word atm) I guess of how similar the side effects of the stroke were for us both.  

I had same migraines..and I am sooooo sorry that you have them to.  They are HELL!  The first year was the worste.  atleast 5 days a week  I was bed ridden in a dark room, no sound, eating ibprofin by the hand-fulls, and still the weight of the air around my head was enough to make it ping pain right through my skull.   Over time they faded, but recently Ive been getting more frequent migrain type pain.  Not as severe but it stays with me for a day or two...and yes the thought of chronic mirgraines coming back is enough to make me puke.  I wish I had a solution for your head aches, but I dont.   During that first year I tried multiple once-a-day medication, that did nothing at all for my head.  One made me so dizzy, another put me to sleep, but all of them just didnt treat the migraine.  Tried hyrdocodone, as an emergency fix for the pain (which worked a little bit, for a little bit), but how do you determine an emergency when 5-7 days a week I felt like I was going to die.

Second of all, I dont want you to think that I am the ultimate chipper stroke victim...because that is far from the truth.  The attitude I have, some days is the only thing that keeps me going, so I am afraid to lose it.   I went through a severe bout of depression as well...so much to digest after a stroke and the effects of such.  "Will I stroke again?  Will I heal from this? Will I be able to talk, and/or understand written or spoken information? Will I be able to walk/use my arm? will the head aches go away? How will I support my family? Will people that love me, not love me, because I am now some one else..different from the person they have come to love?" etc etc  were like a broken record in my head for quite a while.  Some of those questions, ended up being ok...others just didnt pan out.   but Im still here kicking, and I take that to be a good sign =D

As far as the pain, Im not really sure.  I hit a platue (I think I have healed as much as I am able to) about two years ago.  There were days that I felt way under the weather, but not enough for me to search of suggestions on the web, However; Last few months, in my stroke effected limbs,  the pain and fatigue  is increasing by a lot, and the frequency is chronic - non-stop.
Pain/fatigue is effecting everything though.  Cant even sleep, even when Im exhausted due to the aches, and throbbing pain deep in/around joints and bones.  

Bottom line, its a hard road.  There are times, I sit here with my head in my hands, and asking myself, "will this ever end??"  ..and to be honest with you, Im not sure if it will ever end...but I have to be here, with a postive mind so that if it does end, I'll notice =D

My heart goes out to you.  Its hard to talk to people that just dont know what its like to go from perfect to unable to walk or make a sound and chronic head/body pain.  Keep your head up, and know you will (as long as Im still kicking) have a ear (or eye in  this case)   I hope you can get some relieve wether it be with your migraine, or with the mental warfare that goes on inside your head.  Take care Sara!

   -Luke

[sara12345]

Hi there,

You have such a marvelous attitude.

I can't believe that I didn't list my major stroke disability--a severe 24/7 migraine caused by my stroke.  But I guess I was trying to appeal to the symptoms that more people have after a stroke.  

My migraines are not severe 24/7 anymore, but have suddenly gotten worse since my Botox injections didn't work for the first time in over 2 years.  I can barely get out of the house to do much of anything.  They say that the migraines are extremely difficult to treat due to it being caused by a stroke and that I might have the pain for the rest of my life.

You said that you are suffering more pain.  Is that from the increased functioning?  I have found that the more exercising I do, the worse the pain, but the better the functioning.  Now I am trying to get back the functioning that I did have before my mother went into hospice for the last 2 years and took every bit of energy that I had after needing to sleep at least 24 hours a night since my stroke, or my migraines get terrible.

Pain is something that can get to people more than disability.  A certain percentage of people in chronic pain do commit suicide.  At one point when I was so depressed, my doctor told me later that she thought that the pain had finally gotten to me.  Now I'm better with the depression.  

But nevertheless, I am so impressed by your attitude, especially for someone as young as you are.   It's really incredible.  Perhaps that's because you are continuing to make improvements, which I am not.

But I do remind myself of others that are much worse than I am and thank God for what I do have.   It's a challenge though some days.

By the way, my stroke was a carotid artery dissection stroke which is far more common in younger people.  Was your stroke this type?

I really appreciate you responding back to me and reminding me of the good.   I'm sure that you will keep making gains.  There is a lot of good ahead for you.

Sara

[Ofevilorigin]

Hi Sara! I hope this comment, finds you well.  

I had the same exact stroke you described.  Totally forgot the english language (all of it)  my right side was dead to the world, paraliyzed. (works better these days though) &   I suffer MORE pain and chronic fatigue now on my right side than ever before.,  

But when I sit down and think about what "could" be my life, or the lack there of any life, I have to smile.  The fact that Im sitting here, posting a comment on a stroke survivor page speaks volumes of what is, and of what could had been.

Will I ever be back to 100%....no most likly not.  However, I am leaps and bounds beyond my starting point, and even if I didnt improve at all, I still gave my recovery my best...refused to give up.  no matter what.  A lot of those days weren't pretty, stuck up on a physical or mental plateau but thats life right? Make the best out of what you've got! Certain days it was re-learning a new sound or a word..or laughing off the fact I couldnt for the life of me learn words that with S, or Ch sounds.

Remember, if you look at something long enough, you can of course find the short comings of it....I try my best to look forward, unhindered by my ailment, and be happy even over small trivial things.  Im sure your cant do everything you used to...but take a look at all the things you can still do, or new things that you can now do...like YOU giving ME a moment of happiness by reading your comment, posting a reply, reassured that I am NOT alone.


Thank you Sara, and I wish you and george all the goodness in this world!

[sara12345]

George,
I'm so sorry to hear about your situation--far worse than mine.  I can't believe that you never had any physical therapy or physiotherapy until now.  And also can't believe that you got put in such an inadequate facility.  It says terrible things about the medical care in Canada.  Too bad that no one that you knew couldn't have gotten you transferred somewhere else.   You obviously would have limited capabilities to get adequate care for yourself.

I have difficulty functioning on my right side (which was paraylzed) and still pain on that side, especially when I'm sleeping.  I also had aphasia which means you have difficulty speaking where you can't think of the words and also problems understanding others.  Still some difficulty with that.  Also I've had swallowing difficulties and I've had little appetite since the stroke, so it's been difficult to keep even a low end BMI.  Also 3 years later, my vocal chord has forgotten how to work which the ENT doctor says he sees a lot with strokes even with the long time gap.  And I got kidney failure from the CT scans taken at the time of the stroke.

If it's difficult for you to type, don't worry about answering this, but I wondered what the nurse was supposed to be checking to watch for your brain pressure.

The therapy will help not only your functioning, but also the pain.  You have such a great attitude now with the advice that you gave to me.  It is slow progress to get the stroke affected side to improve, but the more exercises that you do on your own, the faster you will make progress.

I truly wish you the best and am really sorry to hear about your terrible care.

Sara  

[George455]

Dear Sara ..my name is George and I had a terrible stroke sep 1 2008....I had not received any physiotherapy and am paralyzed on the left side.Because the nurse made a mistake and wasn t watching over me, I had to have an emergency surgery to just get rid of the pressure in my brain...It left me with a very weak trunk control.and therefore I can t even transfer let alone walk....I m in a long term care facility in Quebec Canada where the only care I get is  wiping my bum when they have time and not when I need it . They don t give me any therapy and leave me in my bed days in and days out.....They put me  in a closed ward for dangerous people who have Alzheimers because they do not understand my symptoms as a Stroke victim. I suffer tremendous pain which they don t really manage and sometimes I wish I died from my stroke because of it.I will never loose hope of getting better.I found a therapist now and am doing physio once a week..I m making progress ..as little as it is I feel that with perseverance I will get well enough to go home...So don t despair just have hope ,work hard and give yourself small goals and don t beat yourself up if it doesn t go as fast as you would like it to go