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Avatar universal

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
41 Responses
Avatar universal
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
Avatar universal
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  
Avatar universal
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!
Avatar universal
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
Avatar universal
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


Avatar universal
I am needing any feedback, as to whether anyone else seems to have or have had recurring stroke like symptoms, 3years after a small stroke.
8years ago, att 39 yrs old I was a senior manager at a large uk ftse company, I had a massive nervous breakdown.
This was due to 20years of 15hour day 6days a weeks workaholic lifestyle, in business management and also running my own parttime business as well as working for private and public companies.

I suffered with hypertension, high cholesterol, and abnormal electrical QT wave diagnosed when I was 24years old, due to constantly having heart pain, I underwent stress tests which I couldnt complete and after having an angiogram,it was found that under stress, my heart arteries and blood vessels constrict severely causing me pain.

All this eventually with my high work ethic, caused me to have a breakdown, I then was unable to work and fell into severe depression.


3years ago whilst having a nice stroll near the beach at cleethorpes,with my wife i experienced loss of feeeling in my left leg for approx 10minutes and then the same thing in the left arm. My wife and I laughed it off, wondering what was going off, I also felt unwell and dizzy so we decided to drive back home to Doncaster.

My left side felt weak, so after having a couple of drinks he went to bed early.
The next morning I was unable to get up properly, so my wife came upstairs and noticed i had the drooped mouth and eye on the left side of my face.
I was unsteady and weak on my left leg and left arm, and I had a severe pain behind my left eye socket and was very slurring and unsteady due to dizziness.
Luckily my 24year old daughter who had popped in stated that this looked like a stroke, and the paramedics were called and came out and confirmed hospital treatement.

I was treated for a stroke and subsequent scans and consultant reports within the next 48hrs states scans have shown white changes on the left hand side of my brain, which should have affected the right hand side, and I had no changes on the right hemisphere to cause the left side issues.
A conundrum as one specialist called it.

I am on treatment, for the above confirmed illnesses, but ive been told that the stroke type symptoms are due to stress and called functional symptoms and I have been recommended for psychotherapy,but will not be allowed down this road until my depressions stabilises.
My grown up children, aged 30, 24 and 21 and myself and wife are getting exccedingly worried, as I am having more of these episodes especially over the last 8-10months.

These episodes are now as frequent as three times a day and sometimes 7days a week, where I suffer episodes of stroke type symptoms, during my sleep, and twice during the day.

These attacks which can be from light to severe attacks are as follows, a light attack is like an electrical current going through my head to a bad one sometimes precedes with a tingle initially in lefthand side of my face, which then ends with me displaying the symptoms as already described on numerous occasions and literally ends with me sleeping,and my leg and arm feeling like a lead weight, these have been seen by many medical professionals within Royal Hallamshire Sheffield Hospital, Doncaster Hospital, the nurses at the local GP and local CMHT.

Once i have recovered ie woken up after a sleep from 2 to 4hrs, i feels sometimes like I am drunk and hungover for a day or two, and i am unable to walk once these attacks happen and i am very weak on my left side leg and arm continuously.

A heavy attack has the following symptoms, dizziness, pain in my head, a drooped mouth and left eye and left handside face, weakness in left arm and left leg, unable to walk, slurred speech, tingling in the lefthand side of face, blurry vision.
These attacks whether light, medium or heavy, always ends up with myself being completely fatigued and then my brain forces me to sleep, from 2 to 4 hrs or so.

These attacks happen during my sleep, as my wife is unable to wake me up in the morning and when i do finally wake up, i have the telltale left sided face droop etc, they can happen anytime of the day, whilst im sat watching tv etc. sometimes 2 to 3 times a day for upto 7days.
My memory is terrible, i am unable to concentrate for long periods,i also lose my balance a lot, its a nitemare.

Ive been tested for bells palsy, ms, but no joy..does anyone have these effects or symptoms after 3 yrs after a stroke?

Im under a neurologists at Sheffield Royal, but theyve put it down to functional symptoms due to stress,..we need help or any info from stroke survivors, has anyone suffered or experienced anything like this...ps excuse the length of this.

I have also been experiencing in addition to the other symptoms, pain in my bones on my left side and back, especially when i retires to bed at night, to the point where we have had to obtain a loan to purchase, a £3000 hospital type adjustable bed, which has not really alleviated the pain.

I have never ever regained the strength in my left leg or arm, this was only a small stroke, due to furred up carotid artery the consultants have informed me.

I am constantly in turmoil over this, feeling very depressed and very suicidal on a daily basis, I just need some answers or other experiences and how they have coped or resolved.

This is affecting my whole family too, in a depressive way.

Thanks

Kind Regards

Dave and Nicola
Avatar universal
Dear Dave and Nicola,
I am so sorry to hear about your attacks.  I have not heard of anything like this after a stroke with the attacks.  I've always heard of stroke symptoms being more steady.  So do you have full strength in your limbs, no head pain, no dizziness or slurred speech outside of your attacks?  If so, you have a gift compared to everyone else that I know of, who has continous symptoms.    

It sounds totally bizarre that psychotherapy could alleviate all or even some of your symptoms.  You should have psychotherapy NOW to help you with all the adjustments in your life.  Also you need more aggressive treatment for your depression.  Have you been seeing a psychaitrist who is trying different anti-depressants and raising them high enough to work.  Also you may need a combination of medications?

If you do in fact have continuous head pain or frequent head pain, there are many medications and other treatments for it.  Have the doctors treated your head pain?  

Also, it would seem that you could use physical therapy to help with the weakness in your limbs, but if the weakness only happens when you have an attack, that would probably explain why it won't help you.

Hopefully someone else will respond who has the same experience that you've had.  People do make some very slow progress years after a stroke, so there is still hope for you and all of us.  

I have a lot of questions about what treatments you have been given for all of your stroke symptoms.  If you could feel that you are making some progress, then I think it would relieve some of your depression.  Please let me know what treatments you are getting.  If you're not, then you need your family to push very hard for you getting the treatments.

So don't give up yet.  My prayers will be with you.

Sara
Avatar universal
Hi Luke,
Thanks for your last posting which does detail your headache problems, which amazingly got far better.  And also appreciate your detailing of your thoughts.

I do think that you should contact your doctors about your increased pain in your stroke affected limbs.  One of my doctors told me that e.g. sometimes leg pain can get worse years later and then Botox can help the cramping in your legs.  Or perhaps you could use physical therapy again.  Don't just put up with the pain.

I wake up about every 2 hours from the leg pain.  Then it takes me about 15 to 20 minutes to get comfortable in a different position because I also have fibromyalgia which has gotten a lot worse.  My neurologist says that once (if ever) my migraine gets better, then a lot of my other medical problems will improve.  He has seen it with a lot of pain patients.

And when I said that I was not experiencing any gains, that's not really true, but the gains are very slow.  I saw a friend who had her stroke 7 years ago.  She lives far away, so I only see her and talk to her every couple years and her language had so improved from 2 years ago!

So we do have things to look forward to.  I wonder if you're married with a family, but you don't have to give that information.  

Thanks again for your responses which meant a lot to me.

Sara
Avatar universal
As a P.S. to my posting above, yes, it interesting that we both had the exact same stroke.  It only occurs in 5% of the total strokes.  

But we are both very fortunate because the recurrence of eschemic strokes which we had is about 25%, but with the dissection type, we only have a "1 percent risk of recurrence per year over the next 10 years. Risk of recurrence is higher in younger patients than older patients, but younger patients also respond better to treatment and have a better outlook. Some patients have reported persistent headache after carotid artery dissection, lasting years after the event."  The quoted material is from Cleveland Clinic--very respected.

Was your stroke caused by a trauma of some kind or was it spontaneous?  I believe that mine was probably from trauma because I bumped my head into the doorway weeks before my stroke, but that was about the time that I suddenly had a distinctly different migraine which my neurologist thought was the start of my stroke.   Those who have the stroke from trauma usually have worse symptoms.

Also I am so cued in to my body's condition, but when I woke up paralyzed on my right side and then not being able to speak properly, in fact I heard gibberish, I had not a clue that anything was wrong with me!!  My judgment was totally gone. Did you have this experience?

Also tPa which removes most of the stroke symptoms if given as early as possible within 3 hours of the stroke would have killed us if we had been given it.  

Just a few tidbits that I have picked up through the years.

Sara

Avatar universal
Hi Sara,

I thank you deeply and appreciate your reply.

Just to confirm Sara, my stroke was not a bleed, it was a mild stroke, possibly caused by a clot from the diagnosed furred up carotid artery in my neck. My mri scans show white matter changes in the brain left hemisphere and i have been diagnosed as having cerebral vascular disease,hypertension, angina, diabetes type2, reflux, glaucoma, asthma, depression.
I am medication for my issues as follows,clopidogrel 75mg, amlodopine 10mg, montelukast 10mg, atorvastatin 40mg, irbesartan 300mg,bendroflumethaizide 2.5mg,pregabalin 600mg, metformin 500mg, isosorbide mononitrate 60mg, lansoprazole 30mg. salbutamol and seretide inhalers. Glyceryl nitrate GTN spray for angina. Cocodamol and paracetamol for pain.

Sara, In answer to your question above, the odd times,when im not suffering with these attacks, my left hand side arm and leg are weak, but not as weak as when i have the attack. However after an attack, my limbs are weak for a day after.
In addition i still get the pain in the head or pain just behind my left eye socket, during an attack and also when im not suffering an attack that day.I take painkillers but unfortunately the doctors are unable to give me anything else for the pain, due to my medication, which could cause internal bleeding.
I do get dizzy spells when i have attack and also when im not having an attack.
However im only slurring,or mumbling during an attack, my speach is clear when im not suffering attacks however my wife and children have stated that sometimes i say the wrong words or speak sometimes putting the wrong words that im trying to say, in the wrong part of a sentence, which they find amusing, and i find frustrating and angry with myself for doing that, but i dont have slurred speech outside an attack.
My memory short term is terrible and i struggle to concentrate ie watch a full football match.
My vision has deteriorated since the stroke, and my left eyesight is terrible, i have just been diagnosed with glaucoma and diabetes, and they are looking into my eyesight issues with no joy.

I am under a psychiatrist for depression, but nothing seems to be working for me, im on medication, ive been tried on different medication over the 8years and im currently on 40mg of fluoxetine a day. My depression seems deeper since the stroke and i am struggling daily.

I feel like im a pain to the medical profession, and as a previous management and business troubleshooter and consultant who has worked in performance and productive environments and with working knowledge of performance measures within the national health service, i feel im a problem to performance and productivity figures as i am still on the consultants caseload. However these are just my feelings.
I believe the medics feel that the current issues are all in my head and they have called it functional symptoms caused by stress. My wife and children and finally myself is starting to think theyre wrong on this, as my attacks are increasing and they seem to take something out of me each time the attacks happen.

Sara i thank you for your positive approach and genuine kindness, and may Jehovah bless your efforts..i need help and answers and im praying loads.. kind regards dave
Avatar universal
Dave,

I think that you and your family need to really push against this non-treatment plan for you--saying that it is all stress and that you can't get any psychotherapy until your depression subsides.  The medical profession or whoever is behind the bill paying is short cutting you big time.  Unfortunately I don't know about the UK's medical system, but you should find another medical team to treat you or file a lawsuit against your non-treatment.  It's terrible.

If you can't get any more medication to treat your headaches, in this country you would be given Botox injections which were approved for migraines by our FDA in October 2010.  It is generally approved for anyone who suffers from headaches at least 15 days a month and are not helped by the daily preventative migraine medications.  Or also what have also helped me are nerve block and trigger point injections.  Or they could possibly implant a stimulator to offset the nerves triggering your migraines.  

The glaucoma shouldn't be any problem as long as they diagnosed it early.  You will just have to put in eye drops every day.  All the relatives on my father's side have it and it is heriditary.

As to your other eye problems, I don't know except that the eyes can be affected by a stroke.

It's too bad that your language difficulties upset you.  In time, that will keep getting better.  My friend who I mentioned above has seen tremendous gains over the last 7 years with her speech.  I also will use the wrong words in a sentence or say the opposite of what I mean sometimes.  My husband and I just chuckle at it.  It is particularly bad when I am suffering from my migraines.  

And I have had months and months of physical therapy for my weakened limbs and hand.  Why haven't you had any?

BTW, at 60 years old, I am being treated for acid reflux, asthma, hypertension, osteoporosis, low thryoid, depression, low estrogen, myoclonus, high homocysteine and fibromyalgia.   The latter causes pain everywhere.  I cannot take any anti-inflammation meds because I got kidney failure from all the dye going through my kidneys from the CT scans after my stroke.  But I am on two daily medications to prevent my migraines--an herbal medication called Petadolex and an opiate Butran patch.  

If you're not able to find different doctors that will try to help you, I would see an attorney to find out what your options could be.  By contrast I have 4 different neurologists at a major university all trying to help me as well as a headache specialist also at the same university.  Plus, I have a gastroenterologist, endocrinologist, pulmonologist, Ear, Nose and Throat doctor, gynecologist, rheumatologist, and internal medicine specialist all at the same university.  All but one of them except one who I have "fired", have all given me terrific care.  

I am very concerned about you and wish and pray for the best for you.

Sara
Avatar universal
Hi Luke,

I have been reading yours and Sara's post. My heart goes out to both of you and I am learning a lot from your experience. I had a stroke in 2009 but was lucky and I have come through it with just the migraines. The migraines did go away for almost a year but they came back last week. I need to know how you got through those questions you posted. Whenever something is off, or I have a pain in my head I can't help but think that this is the stroke that is going to kill me or paralyze me. How do you keep that question from surfacing? I am tired of waiting for the stroke to come.

Thanks,
Maggie
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