People that don’t have a brain injury DO NOT, CANNOT, NEVER WILL even come close to understanding the fatigue that has resulted from this.  You might be a doctor or a therapist, or have 10 PhDs, unless you have experienced this you don’t get it, trust me.  And from what I’ve learned, the fatigue will be an issue for the rest of my life.  It’s a heck of a lot better than it used to be but I kinda feel like it’s plateaued, the fatigue is unchanging now.  I have an entirely different brain now than I had before the stroke.  Luckily, my personality and cognition were not affected but even though I may seem like the same person as before, I’m not.  I went out Saturday at 5 o’clock, was in bed by 10:30 and it completely wiped me out for 2 days.  So if someone says they’re tired, BELIEVE THEM.  By the way, in my opinion, don’t bother going to a “sleep doctor” and having a sleep study.  That was an absolute waste of time for me.  Just figure out for yourself how to deal with this and what works best for you.

Categories: Brain stuff, Health, Recovery, Stroke stuff

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77 replies

  1. Yeah the fatigue is a huge problem. I am still finding myself improving in my endurance (post 5 years) but the gains are very slow. I suspect that my physical improvement is saving the energy usage but that the bone level exhaustion is just waiting to catch me. This is my biggest worry about going back to school now. I think I can do the cognitive stuff now but can I manage all day without lying down?

  2. I went to a doctor to get a sleep study and before he agreed to do it he handed me a written prescription that just said; ‘Sleep more’. Gawd the stupidity, it burns. I did get a CPAP which I think are just training devices for waterboarding. Fatigue is a bitch even 7 years later.

  3. My husband usually takes a nap every day for 2 or 3 hrs, at first I though he was lazy and I was mad at him for always wanted to sleep and not doing as much as I was doing. When you have never meet any body who had a stroke is easy to judge them, but as you learn more and more you understand that everything takes more effort for them now and resting is also a process of healing. We don’t know what you guys are going trough that is why I love reading blogs of people who had a stroke and can share how they feel. My husband has aphasia and has a hard time expressing himself. So thank you for sharing.

  4. SLeep study? Why bother? I take a nap everyday for as little as 30 minutes to up to 2 hours and still sleep 12 hours a night! The other night, because of our teenagers, I only got 6 1/2 hrs sleep. Pre-stroke….no problem. Post-stroke….BIG PROBLEM! I ended up sleeping most of the day on/off.

  5. Oh…YES.. EXACTLY!!! This is my main deficit, and is life changing. It’s sooo hard to accept, to deal with. Mine is really severe. I’m only awake 10, sometimes 12 hours a day max. This is the main reason that I could not possibly work a “normal” job. 40 hours a week? Not a chance. I can barley stay home and take care if my son. I have to nap and my husband makes sure I get what I need…Thank God he’s willing to do what I need. This was a sore spit at first, but now he knows what I need… it’s not optional. I literally fall apart if I don’t get the sleep I need.it has gotten way better over time, and it’s still improving, however slowly. I notice from last year it was 8 hours now 10-12. I’ve done almost everything imaginable for this cuz mine is so limiting. The only thing that really helped in a big way was seeing the endocrinologist. He changed my thyroid and I felt better within a month, I gained 2 hours a day!?. I told him I need more….but pregnancy is not the time to be experimenting, so after December, I’ll be back.They’re monitoring my levels and say I’m fine, but I think I need more. The other thing that I was working on before I got pg was accupuncture. So I’ll be trying both of those after I deliver, to see if they help, otherwise I’m out of ideas. I’ve tried everything else, with little to no success: different diets, all kinds of exercise, sleep study, sleep hygiene, meditation, medication trials, skipping naps, toughing it out, naturopath, off all medications, endocrinoligist, all blood work imaginable, st, ot, pt, cognitive therapy, vision therapy, psychotherapy. I hope u have a better time with this than I have. It sucks, but I’m always hoping it gets better eventually.

  6. I went from a forty year habit of sleeping four hours a night pre stroke to eight to ten hours post stroke with a couple of naps during the day. Sleep studies are ineffective with stroke survivors. It all depends in how much you use your brain and if your eyes are open then your brain is working.

  7. I think sleep studies can be helpful, if not critical even for and especially for anyone with a brain injury. Depending on what part of the brain was damaged, sleep apnea can present itself and be a very big problem…potentially fatal. Yes C-PAP is very uncomfortable, but in my opinion better than death. Knowing if u or any survivor has apnea can be life saving knowledge. Your study was particularly bad in that the environment was not conducive to sleep. Mine was completely different, done in an office suite, looked like a cozy hotel room with great bed and nice sheets. The wires were uncomfortable, but I did sleep eventually. Mine showed some problems with my sleep: NO REM sleep, excessive periodic leg movements, etc. So while I spend a lot of time sleeping the quality sucks, but no apnea for me. It helped my husband understand that there really is something wrong, I’m not lazy or making this crap up about being tired.For him, objective findings have helped him to accommodate to my needs better. I tried a few things to help improve my sleep quality…it’s a work in progress. I started dreaming again @ about 2 years in so I’m hopeful things will continue to improve. My “hyperacute” hearing contributes to the problems even though I sleep with ear plugs and a fan….every tiny sound wakes me up preventing deep sleep. Ugh….this fatigue really sucks!!!

    • Yes, the environment for my sleep study was absolutely terrible. Horrendous, really.
      Isn’t that a common trait in moms with little kids though? Every tiny sound will wake them up?

      • Maybe….but anyone that tries to say that this stroke crap is normal for any parent of small children is wrong!!! I have been told many times, “oh every parent is tired…blah blah…” It is not even comparable. There is nothing normal about how I feel and I was nothing like this before. I had more energy than anyone I knew. I busted my ass in college working 3 jobs while taking 18 units most semesters with a 3.8-4.0 gpa so that I wouldn’t end up with any student loans. Good thing, cuz I’m not working now and I’d hate to be owing all that $. I couldn’t even imagine maintaining that type of lifestyle today. I am way beyond normal tired and normal parent hearing. My hearing sensitivity is all the time 24/7.. and another very annoying deficit I have been unable beat yet. The hearing makes social situations painful, restaurants are a nightmare, and my son plays drums…I think of it as therapy and wear ear plugs when I have to conserve energy. There is nothing normal about how my brain processes noise or any stimulation really. Visual processing is super draining too!!! Shopping, even grocery shopping is draining, why do they insist on “resetting” the store every few months? I depend on finding what I need in the same place every time. I don’t have energy to search the whole store for what I need.

        • That’s interesting. Is the hearing sensitivity a stroke thing or have you always been like that? Loud noises really bother me but regular noise is ok.

          • Yes, brain injury related. It was a new, terrible deficit after my surgery/stroke . It’s hard to fix…there is no “therapy” for it, and it’s really hard to deal with. Most of the things that I am left with are issues they don’t know how to fix. There was actually an article this month in Stroke connection about the auditory processing issues. I was happy to see them at least talking about it. Would be nice to see some research or tx options…but that’s asking too much. 😉

  8. Don’t hate me, but I generally have no fatigue problems. To bed by 9 and up at 6:15 every day, sometimes a later bedtime depending on social life. Still up at 6:15. I usually have a very relaxed, slo-paced schedule, but lots of sitting and writing/read alternating w physical activity. One trouble I have is that if my body is exhausted, butmy mind is still engaged, I just can’t nap. I lie down, give myself permission to take this break, and sleep never shows up.

  9. Please don’t hate me either, but I don’t seem to have the kind of fatigue you guys are describing. Physical tiredness after a day of therapy, and falling asleep by 9 because we get up before 6, but I don’t feel the need to nap during the day. I do need to rest a bit after an hour of therapy, but that means checking my email and playing Words With Friends ( nice playing, Amy) not a full fledged crash. But other than synthroid which I’ve taken for years and claritin for allergies, I’m not on any meds. I was on a ton of meds which made me sleep all the time and I just stopped them (disclaimer: Don’t do this just because I’m a doctor; check with your doctor first, or at least with Dean since he knows more about stroke than any doctor).

  10. Oh wow Barb and Julia I thought fatigue just was a given for someone that has had a stroke. Don’t worry, I don’t hate you for that. Well, maybe a little. 🙂

  11. It’s okay if you hate me. I hate everyone who can walk freely or use both their hands.

    • I think having an arm, leg, whatever issue would be easier than this fatigue. The fatigue is soooo limiting and there is no therapy, brace, bioness to help improve it. We just have to wait it out.

      • Elizabeth, I agree. In addition to being very grateful that the stroke did not give me aphasia, I’m grateful it didn’t give me debilitating fatigue also. Hopefully time will heal all of you.

      • l guess the grass is always greener. I would take fatigue in a heartbeat if it meant that I could walk freely and my arm and hand were functional again.

        • Yeah the grass is certainly always greener. If my speech was normal all this other shit would seem like a dream.

          • Do you have aphasia Amy?, good thing you can write, my husband Michael can use the computer just a little he was so good before but know he doesn’t remember most of it. Is sad to see him struggle or asking us for help. Do you live by yourselve?

            • I don’t have aphasia, no. I’m pretty sure if I did that this blog wouldn’t exist. I’m very glad I don’t have aphasia. I do live by myself, yes.

              • Brooke, I don’t mean to be a pain, but I’ve been struggling to understand what “beezy” means. If it’s a typo, I can’t figure it out, which is driving me crazy, since I used to be an editor and had to unscramble words and sentences. Never was it this hard. can you please tell me?

                • Haha, this question is in the wrong spot. I’m gonna see if I can move it so Brooke definitely sees it. ‘Beezy’ means ‘bitch’ for people that don’t swear. 🙂

                  • haha! I was just reading through the comments because of your latest post about people getting snippy…I wanted to know what that was all about and I saw this. Yes. Amy, has it right. It’s a substitute curse word. 😀

              • Now wait a minute. I have a certain amount of aphasia and I blog. It’s the only way I can get the words out right with some editing.

                • Ah ok, so is writing easier than talking? I’m not sure I fully understand aphasia.

                  • Amy, it is for me that that is not always the case. With speech there is mouth movements, breathing techniques, and tongue positions. Do I always find the right word to express what I want it to, no. Do I leave of words in sentences, yes. (most people scan read and fill it in) Do I misspell words, all the time, but spell checker fixes that most times.

                    But for me typing is easier than speaking.

        • Julia, oh I doubt it. I had the arm, hand, leg foot walking issues. Those will get better. You can work on them, you can get by with them however slowly….differently. this fatigue literally STOPS me. I can’t do a damn thing when my time is up except sleep or cry. It’s horrible. With the physical issues you have some flexibility, some adaptations, for fatigue there is nothing..I’ve tried everything!!!

          • I accept that for you the fatigue is the worst, however, if I could fix my own hair, cut my own meat, tie my own shoes, zip my jacket, leave the house by myself, take the subway, and do my work, I would gladly feel fatigued for the rest of my life. I am no longer independent which for me is much worse than any fatigue could possibly be, even the debilitating fatigue that you describe. I’m not saying that what I have is worse, I’m just saying that it is worse for me than any amount of fatigue would be. The first sentence of your comment is ignorant at best, since you haven’t a clue what my actual physical condition is. You have no idea if I will get better and your blanket statement that I will is problematic for me. Are you such an expert that you know I’ll get better because you did? This is not a contest as to who is worse off. I was merely expressing what I felt.

            • I am sorry that I offended you. Perhaps my statement is ignorant but it is my belief and was my experience. I do believe that if you abandon hope of recovery than it will be over too. I am a huge believer in positive energy and positive thinking. Perhaps that is ignorant….I don’t care, I wish you the best and will hope the best for you. This is not a contest, and the person who is worst off or best off doesn’t win. I just try each day to be my best and improve upon where I was at previously. I think there is too much negatively in the stroke world. Doctors, so called experts giving dooms day predictions. I prefer the opposite side of the coin. That the human potential is limitless, we can and will do anything. I believe in miracles, ignorant? Maybe….I’ve witnessed it…I’ve lived it. Anything is possible, unless the individual involved gives up and surrenders to what is here and now. Best wishes.

              • And that long list of things u said u could do….could NOT be done with this fatigue either. Not to pull a tit for tat, but that proposed list is ignorant and demonstrates Amys point. If u don’t have it…u don’t get it!!! I could do some of those things, but definitely not all of them….especially together. The subway would probably be a deal breaker for the whole day, maybe a few days…working??HA HA.. no way,unless they allow naps and don’t care if I screw up when my brain quits. This fatigue is limiting in every way and I too am dependent because of it. Just in a different way. And I’m hoping, thinking I will be better someday. Ignorant? Maybe.

                • Elizabeth, I understand both your and Julia’s opinions on this. Like Julia, I too would take fatigue over my current limitations, but I don’t actually KNOW what it is I’d be picking. Ditto for you; my limitations prevent me from doing nearly everything I delight in in life. I try my best to do them anyway, using different approaches, but sometimes I just don’t find a solution. I am glad that your positive attitude and hard work got you your arm and leg control back, but I’ve been doing that for 4 years and I still can’t use them. I improve every day, and I’m proud of that, but please don’t pas off what you did as trivial; I wouldn’t do that about your fatigue.

                  • Thank you Barb for your beautifully articulated reframing of what I was trying to say. My temper prevents me from communicating as effectively as I’d like to sometimes (I’m not aphasic or impulsive, just an opinionated bitch with a very, very short fuse who wants to beat the crap out of people with her cane). I think you really do understand the constant, unremitting pain of being unable to do anything you love, anything that gives your life meaning, and while I feel terribly sad for you as I’m sure you do for me, I also feel less alone reading your comment and for that I’m extremely grateful. I can’t wait to read your book.
                    I don’t know from experience what it is like to have cancer, but, as a physician, I have seen a lot of cancer, and from what I’ve seen, I would still chose cancer over my current limitations. This would not be everyone’s choice, but it would be mine. And I totally understand how someone with cancer might prefer my limitations over their own, but that doesn’t mean that either of us would be belittling the other’s cross to bear. Again, thanks.
                    By the way, your post on authenticity was quite thought provoking. Telling you so is on my endless to do list, and I really meant to get to it sooner.

                    • Julia, thank you so much for your compliments re my comment and my blog post. Like Amy, I love tossing out a topic and seeing what results; I hear what’s inside my head all the time and it is exciting to hear fresh perspectives from others in my position.

                    • P.S. Julia, your cane comment made me smile. Although I am fervently nonviolent, I do sometimes threaten: “I have a cane and I know how to use it.” I have also used my cane to whack a car that was about to hit me. Twice, I think.

                    • I am not and never did belittle anyone’s cross. I KNOW what’s it’s like to have an arm, leg, hand that doesn’t work. Along with everything on my left side: tounge, mouth, face. The drooling and choking…not being able to eat were huge problems….I lived it for about a year. It prevented me from picking up, caring for and holding my 2 year old son. I will never get that time back…and it was devastating. I get the loss. I never said you gave up hope, but what I ment was giving up will end any recovery that was to be had. And I should have not said u “will” recover but rather u “can” recover. I also have Hashimoto’s and it’s not the same, so whatever. You don’t have it, you don’t get it. You have chosen to be an self proclaimed “angry bitch that wants to whack people with a cane”….we live in two different worlds and we have 2 completely opposite attitudes. Maybe you could try the yoga Amy is always discussing…she says she is less angry now, which I can only imagine is good for her body. You are a physician I am a nurse…we have both seen a lot of life and death. You have ur opinions, I have mine. We have very different approaches to sounds like most everything, that’s what makes the world go around. People sharing ideas, learning from one another.

              • Elizabeth, you mistakenly have assumed that I have given up hope which I have not or I wouldn’t be spending all my waking hours working towards recovery. And while a positive attitude is helpful, it is by no means a magic bullet, and, in my experience, is just another way of blaming the patient for not recovering. “You can’t use your hand because your attitude sucks”. How many of you out there have heard this from medical professionals and so-called friends? Barb, am I remembering correctly that you mentioned this on your Strokese post? I don’t believe in miracles and I don’t believe that anything is possible as long as you don’t give up. I’ve seen a lot of people die, people who were positive and never gave up. Illness sucks, and I believe that the pressure that Dean is trying to put on the medical profession is the way to go, not blaming the patient’s attitude for poor results. We need more and better research done by physician-scientists who aren’t insurance company whores and can think outside the box. Ditto for therapists. Elizabeth, I wish you the best, but I would still take your fatigue in exchange for the use of my arm and leg. You may think that I don’t understand how fatigue can limit one’s life, but I do. I have Hashimoto’s thyroiditis (a cause of hypothyroidism) and until I was properly diagnosed and treated, I was so fatigued all the time I could barely stand or think. Maybe not the same as what you’re feeling, but I do understand how limiting fatigue can be. It’s especially hard because it’s invisible and people assume that you’re lazy and making it up, which only makes it harder to deal with.

  12. Amy, I don’t have fatigue either. I work about 45 hours a week. Go to bed at 9 up at 4:30 or 5. At the office by 7:30. Finished at 4:30. Right after the stroke, I was sleepy all the time, but it improved with time and being more active…as time went by my endurance improved I think my poor sleep habit contributed to my stroke.. Pre stroke, I thought sleep was a waste of timeand so fought hard not to succumb to it.I wasa person who frequently travelled top the west coast on business and often took a red eye home and went straight to my office from the airport. It has taken almost 4 years to regain my endurance. I get physically tired from doing too much…the difference is that now, I rest when I need to and that has heklped me improve endurance. Marta

    • How long did it take you to get back to working full time?

      • Amy my stoke was in November of 2009, and I returned to work in February of 2010, in a less physically demanding role, but intellectually more challenging, I started a social media presence for mty company, a field i knew nothing about so had to learn quickly and then execute. In june of 2013 I retired from that job and immediately went to work running the small manufacturing business I own with my husband…and again have had to learn a whole new industry. I believe constant learning is the key to my good recovery. I walk with a cane…getting better at it every day, but believe I will always have it. i think I’m kind of stuck where I am…have plenty of specific goalsthat I keep working on as I continue to work on my recovery. My left hand and arm are just alomng for the ride at this point. Miss that the most.Marta

  13. Fatigue is a beezy. I don’t have a brain injury but teaching puts me on my butt for at least an hour after I get off. If I would go to sleep by 9:30 or 10 every night I would probably be fine. But, no, I insist on staying up until my eye lids won’t stay open. This is partly because I am afraid to lay in bed alone and awake. I usually end up having a crying fit. I try to avoid that at all costs. My therapist would get mad at me for that….but, I just don’t feel like crying all the time so I avoid the sadness and most things that make it come. Sleep is a biggie. Zack used to sleep literally all day, right after his injury. Now he is up every day from about 7 or 7:30 to 9ish with no nap. And he does 6 hours of therapy (or more) a day. That is soon to stop as he is running out of days. poop. But he usually has to take a nap on the weekend. Even just a short 1 hours nap on Sunday afternoon. He does enjoy his recliner time, though. Sorry it took you two days to recover. But, perhaps, if you make it a semi regular thing, then your stamina will increase? We will hope and pray that way.

    • Originally from Barb – it was in the wrong spot. 🙂
      Brooke, I don’t mean to be a pain, but I’ve been struggling to understand what “beezy” means. If it’s a typo, I can’t figure it out, which is driving me crazy, since I used to be an editor and had to unscramble words and sentences. Never was it this hard. can you please tell me?

  14. OMG, when I told my husband about this blog conversation, he was shocked that I said I don’t experience fatigue. He said I’m exhausted all the time and am always taking naps. The striking thing, he said, is that I sometimes say I don’t want to do something because I’m tired, something I never would have done before. The difference probably is two-fold: I have a choice whether I say no or not, while you guys just couldn’t if you wanted to, plus I feel I can be more self-indulgent and say no if I don’t want to, rather than feeling obliged to go.

    • Oh Barb, I can just imagine your poor husband’s face when you told him. Your commnet is hitting on exactly what my concerns are about school in two weeks. Right now I cope very well but I live with a husband and 2 adult daughters and have the freedom to pace myself at home. I volunteer about every second day for a few hours and manage but I get pretty darn exhausted so I rest when I get home and then I am ready to go again. What is going to happen when it is a full days for 5 days a week? Plus homework? Panic is obviously setting in here. yikes.

      • Linda, yes, of course panic is setting in, but it’s because going to school is a big unknown. Once you start and experience how you react to your new schedule, I’m sure you’ll find a way to make it work.

  15. WOW what an exciting conversation.
    I think the specific symptom/ deficit that is the biggest issue for an individual will tie in with their sense of who they are and what they need to do in the moment or to cope with their day. (my humble opinion)

    In my stroke Tai chi exercise group we have a younger guy who made his living as a radio announcer and he is really having huge issues with aphasia. His walking and arm use are very poor but mainly he wants to talk.again We have another guy with aphasia and one sided paralysis who has 2 toddlers in the house. His aphasia is severe and he really does want to talk better than his babies and read them stories but he worries most about fatigue and he wants to recover his leg movement enough to run fast enough to catch an escaping kid. He wants to feel safe babysitting his own kids once in a while but he is terrified that he won’t wake up of there was an emergency in the house. Just to even things out the former roofer ,who has left side paralysis, is getting good disability insurance payments and he is kind of thrilled that he will never have to do another roof in his lifetime.

    • Linda, buying workers’ comp for people we hire to help renovate our house is VERY expensive, so the benefits had better be good.

      I can relate to the man who wants to be able to be alone with his kids – I’m worried already about babysitting my grandchildren (and my kids aren’t even married yet!). And not having aphasia is a blessing, given my profession.

    • I agree Linda. It’s how is that specific limitation is affecting that person’s life. My point that was lost is that this type of fatigue is completely limiting. You might as well be a paraplegic when it strikes…time is up….it’s over. So what if u have an arm, leg, hand that works, when the fatigue monster comes….NOTHING WORKS.(All of my old issues pop back up) And if you try to push beyond the “sweet spot,comfort zone” you could pay the price for days. Finding the balance has been/continues to be challenging, because I’m inclined to push beyond, but I’m learning to be more careful….it’s not worth over doing it. I think it really comes down to the lack of understanding. Anyone that doesn’t have it, doesn’t understand it…just as Amy posted. There is also almost no research in this area. There are no adaptations, no therapies, nothing to do about it, no proven methods for improving. It just is what it is.
      Best wishes with your college plan. That sounds wonderful and terribly exhausting…..you’re very brave and ambitious. Will they allow part time or only full time?

      • Elizabeth, I have to go full time because of the back to work program that is funding me. I did get one course credit at night school last year toward this years work, so that is going to make a couple of months lighter for me. It is a course used by several departments at the college and so it was available part-time because of that. I just have to rembember to breathe!

  16. Oops! No surprise I don’t know. Now if it had been a swear word, I’d have known. I guess I’ll use urban dictionary next time.

    I always have trouble re where to put a comment. I’m always hopeful I got the correct spot.

  17. Hello All,

    As a speech therapist, that works in a rehab hospital, this thread is really interesting. I’ve observed the fatigue issue with a lot of my patients, and generally it’s always worse when they first come to the hospital (assuming it’s a recent stroke). It generally gets better as we go along, but it’s important for me to hear this first hand knowledge about how pervasive this can be even months/years post stroke.

    Thank you all for posting and giving me some deeper insight into the recovery process. My observations have led me to believe that while there are patterns of recovery for any particular type and location of stroke, that everyone’s stroke recovery process is different. Being positive is always better than being negative about your prognosis, since a prognosis is a guess anyways (even if it is an educated one). I encourage you all to keep positive and keep fighting.

    Our Physical Medicine and Rehabilitation Dr. tends to use a lot of neuro-stimulants (especially Amantadine, and occasionally others) with our patients that have had a stroke or TBI. Do any of you have experience with using neuro-stimulants to combat fatigue? Do any of you use sleep Rx to help you get “quality” sleep or is this path also ineffectual?

    • Thank you for ur feedback. I’ve tried amantadine ans several other medications with no success. The amantadine, even at a super low dose created terrible anxiety but I was still completely fatigued. I have worked with a ton of doctors, neuropsychs, every type of expert trying to fix this….unfortunately for me it seems to improve with time. I am improving, however slowly and I am so far off of “baseline”, it’s tough…but I remain super positive and think I will get better someday.

    • Admin I am pleased to see you trying to understand and learn via out experiences, Good for you!
      I am very involved with my local Stroke recovery association. Two of my stroke friends have used neurostimulants with some good success and in fact both returned to part time work. My Dr did not use it with me because of the other medications I needed to be on. The decision was made that since there was some improvement in the fatigue, just like you mentioned with a new injury, and improvement in other neurological symptoms we should just let recovery takes it’s natural course.

      What I did get was a LOT of help from a special rehab program I was lucky to be in. My team of OT, PT and a dietician and social worker worked on how to conserve what enegy I had so I could do what I needed to do and get throught the day safely. I learned to plan ahead and to work smart and not just work hard,

      Medication wise for the stroke people –
      I see fatigue meds and stimulants taking a back seat to issues of severe depression post stroke. Many, if not most, of the people I come across are on various antidepressants and there are a lot of survivors who are on sleeping medication designed to keep them sedated through the night and longer, often with their safety and the sleep needs of the home caregiver taken into account. I know there are many great antidepressant medications out there that do not have a sedating effect but that does not seem to be the push in my area,

      • It sounds like you are doing well, Linda. I’m glad to hear it. You bring up an excellent point about anti-depressants. One of our Docs likes to put almost all of the patients with a recent stroke on an anti-depressant (like Lexapro for example), if there are any overt signs or symptoms of depression. We also consult a social worker with almost all of our new patients that have had a stroke. I’m glad to hear that you had some good early intervention.

        It can be very tough to balance the amount and type of different medications that a patient is getting in the beginning, and throughout their recovery. Luckily we have a great doctor who really cares and follows his patients closely. He listens to our feedback, adjusts one medication at a time, and observes the effects. Some patients do really well with Amantadine, others do not, and still others seem to get little to no effect from the normal dosages.

        While I know it’s probably easy to lose faith in the medical community, there are those who really care and will work with you to find a workable solution. Unfortunately, there is no one-size-fits-all approach with stroke recovery. The sooner we realize that as healthcare professionals, the sooner we can be effective actors in recovery.


  18. Since we are all talking about crappy deficits and what we think are the worst…have any of you guys experienced eye issues as a result of your injury? My husband has more eye issues than anyone I have seen or met to date. I can hardly find any information on it, too. He has nystagmus, inability to focus, and double vision. He will most likely struggle with all of those for the rest of his life…at least to some degree. When you look at him he looks almost like a blind person does…you can tell he doesn’t see you normally. This has affected his ability to learn to move again-stand, walk, grab things, judge distances, even wheel himself in his wheel chair…talk about debilitating. This has been the thing that I have prayed for and hoped would be fixed…more than anything else. He has fatigue, too. I’m not sure to what degree because he hasn’t had the chance to try and live a semi normal life yet. But when he doesn’t get enough sleep, just like you guys have described…everything is worse, speech, eyes, movement. His hearing was really sensitive in the beginning too. He still has a hard time in noisy places, but it’s not as bad as it was before.

    Brain injuries suck. I am so over it. Too bad I can’t just give up on it like a bad habit or a hobby I find isn’t as interesting as I thought. Dang.

    • I’m sorry to hear about how hard all of this is and YES, YES IT SUCKS!! I also had tremendous problems with my eyes. Everytime I opened them I puked for about a month. I was sooo dizzy and felt like everything was moving. I couldn’t read because it seemed like the words were dancing around the page. No tv…too nauseating. The problems with my eyes were many. I saw several specialists….none of which were helpful. They would tell me, “oh yes your brain is damaged and it’s effecting your eyes, but there is nothing we can do to help you.” Ugh!! I searched and searched for a solution. I finally found a specialty I had never heard of neuro-optometric rehab. I had seen 3 neuro-ophthalmologists that offered nothing but this was different. I found their website http://WWW.NORA.CC The president of NORA happened to be right by my house. I made an appointment, it was really expensive, but I couldn’t afford not to see. Dr. Garbus worked with me for months, until most of my issues were resolved. He literally saved my vision!!! The exercises were boring and nauseating, but I wanted to see and drive someday. I did everything he told me a million times more than he prescribed and it worked…not overnight…..but eventually. I just kept at it and kept seeing Dr. Garbus. He was like a miracle worker for my eyes. You can find a local provider on the website. I wish you guys the best in your husband’s recovery.

      • Thanky you so much for that link, Elizabeth, I’m gonna send it to my friend with eye problems.

      • I can’t believe I am reading this right now… My husband has been to Dr. Garbus three times. Small world! Twice for his initial exam and once, just recently for a follow up. And yes, you’re right, insurance doesn’t cover it. But we will keep paying. He has been doing inpatient therapy for almost three months now at a facility called CNS in Bakersfield, they make a weekly trip with their patients. I cannot rave enough about how amazing this facility is. Zack was at another facility for about 5 weeks before getting discharged into CNS and the growth that has happened here can’t even touch the growth there. For instance, to tackle a subject you get bothered by, Amy…speech. His therapist at the first facility would literally say, “repeat after me”… And that would be his speech therapy. I didn’t know much about speech therapy at the time but that just didn’t seem right to me. Then Z came here and DANG, so amazing. So different.

        So far we are noticing some very slight changes for the positive with his double vision. But nothing to write home about. I desperately want zack to drive again… It may sound funny and stupid but, I was never the driver, he was. And he loved driving… I suck at it. It’s just one of our funny little things. I would never tell any therapist or doctor that because I feel like they would laugh in my face because… “Of course he won’t drive again… Look at him!” But I hope and pray everyday for those eyes to get better. He went to Garbus about a month ago… so he’s only been doing eye exercises for a month. I am hopeful as the therapy continues his eyes will get better and better. I will also share with him that you did the exercises a lot. Maybe that will spur him on.

        I am thankful his dizziness was the first symptom to leave. Thank God! I am also glad to hear your eyes are better. Stories like this keep me going. Thanks for sharing. We should email and maybe hook up sometime. Sounds like we are super close! I always love to meet people who are farther along in this process than z. Brookeannfuller@gmail.com I would like to talk to you more about your recovery process as far as the eyes go… I can literally find zero info online.

        Thank you, barb. I always enjoy reading the things you have to offer. You are always so kind. Bless you, friend! I wish you even more recovery than you have already achieved.

        Praying for you all regularly.

    • Brooke, my uncle has a black area in his vision, called a field of vision cut, maybe? Not a single other chronic issue. His doctor says it’s ok for him to drive, but my cousins are obviously freaked out about someone getting hurt. He’s over80, so why’s he driving anyway? I wish you and your husband the best recovery ever. You’re right. This whole situation has gotten old for all of us … It’s relentless.

  19. Yes, Brooke, we are probably pretty close. I live in Valencia, about 1-2 miles from Dr. Garbus’s office. He was amazing with me!!! I WILL email you later, my son just woke up. I spoke with a lady from CNS when I was doing outpatient, it seemed like a great place, but I was almost done when I came across them. I found with the eyes, doing the exercises s lots of times a day, rather than lots of reps at once was what helped me the most. It took awhile to start “seeing” results, but it eventually happened, and the dizziness was horrible!!! I lost a lot of weight.

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