One good day, one bad day

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Hello again, dear fellow stroke-survivors,

I’m here to discuss my bizarre pattern of one good day, one bad.
I’m 11 months post stroke. For months now, I follow this pattern ; one day is ( relatively ) good, and the next day is a bad one ( what I call a locked glute day ). My mood varies accordingly. Generally I’m positive and optimistic… but I was dreadfully unhappy, no sleep, and under strain 3-4 months after stroke.

I have 3 ailments on my affected side ( right ) that plague me :

  1. UT infection… only it really isn’t a UTI because it’s bad in the night, and I feel nothing in the day. A large area close to genitals ( even along the inguinal area of the leg ) aches at 5-6 am in the morning. Passing water does not hurt… but UTI is the closest I can come to describing it. It could follow the pattern of a common cold. Another theory is that it lies along the liver channel. One creepy thought ( probably wrong ) is that the immune system is compromised after a stroke. Most mornings I come down to breakfast with a runny nose. After Vitamin C this clears. The pain in my groin gets lost during the day or subsides amidst the clutter and distractions of life. Last night I was free of this pain. Hooray.

  2. My right eye hurts when I close my eyelid. It feels like a brush in contact with my ( open ) eye. So uncomfortable. I’ve had the eye checked out twice at the Eye-hospital. Pressure was 28, a bit high, then 22 ( borderline high ) about 4 months later. Nobody at eye hospital could relate to what I was complaining about… I was complaining about something so far fetched, they had never heard of such a condition… According to my Chinese dr. the liver channel ends with the eye, and my eye-pain definitely follows a subtle pattern. With my stroke comes a general difficulty in relaxing or dissipating tension. If I work myself exercising hard one day, my eye suffers more. My eyesight is fine. The problem is that closing my eyelid causes extreme discomfort. The eye often waters, and suffers badly in the wind. Last night the eye was more relaxed.

  3. My leg problem follows the pattern one day good, one bad. My glutes ( hamstrings and other muscles, including quads ) are free one day, then I wake up the next day with a slight lock , which culminates with all the tension in that leg not dispersing, building up until the leg is locked and jammed… I then walk ( always with stick ) in a rigid posture, not even bending my knee. That night the tension will gradually dissipate… takes hours to do mind you. Hopefully I wake up with it gone ( just once it was there for an extra day ). It has followed this pattern for five months. I used to call this spasticity, but my physio, while he admitted I did have some ( not much ) spasticity 6 months ago says I no longer have any. He calls it spasms… we could say it’s a cycle of spasms. I reduce my exercise load on-lock free days to about half. Today, hooray, I am lock-free ; so, off now to do exercises and treadmill.

My arm was remapped 10 days after my stroke. That is to say a new part of the brain now controls my arm. It often feels like somebody else’s arm, especially at night. It moves beautifully though, but still suffers ( as does all my affected side ) from lack of sensitivity, inability to feel, little proprioception, unable to feel its own weight being surrendered.

I think as time goes on things will settle. My mind is much more settled, as I further my own understanding, or for example as I learn about something new, like the liver channel, from my Chinese dr. who sees me twice per week. My understanding is that a lot of stroke warriors here have problems and ailments that are not easily explained ; each brain is damaged and recovers in its own way. Every time I read new posts here, I detect a lot of uncertainty. Have I had a TIA ?, people often ask, maybe no, maybe yes, multiple times? If anyone has any insight into these weird and wonderful symptoms, or any mysterious unexplained ailments, particularly if they match mine, I’d be delighted to know more. I feel my problems are not life threatening, but they pose maximum challenge and test of my patience.

Thank you Simon(Edinburgh) , for encouraging me to write. I’ve no doubt this classes as fairly uninspired literature, but it is what happens to me. BTW streaming is certainly capable of Hi-res ( beware bluetooth which is geniunely poor for hifi ) , but you’ll find audiophiles pass on it… so do I. P.S. For new readers, I am gaining a huge boost in morale from listening to my Vinyl LPs… It took me 10 months before I could put them on and take them off without damage ( due to the lack of ability to feel in my stroke-hand )

Thanks for reading. Peace.
Happy recovery and I wish good progress to all.
Ciao, Roland

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@pando Roland, amazing how complex and varied your symptoms are. The same for me, only lately I have only bad days and I’m ready to go back to the doctor to see what’s wrong. The spasticity is now constant and pain is slowly setting in. In bed, I just have to move my hand a wee bit and I spasm uncontrollably. From head to toe on the right side. Your eye problem is very perplexing I’m sure, and I hope you get some relief. I had that UTI-like symptom years ago and it turned out to be prostatitis. A blood test and urinalysis was positive for the condition. I had to take Anti-bios.
Yes, the TIAs are always on my mind, but how many MRI or Scans can we take? I’ve had 3 in the past 3 months. My right leg and Butt cheek are so numb it is like a pain-free pain, if that makes sense. When I walk it feels like a piston going up and down.
My elbow and hand…I’ve about given up. High repetition movements, strength training, leaving them the heck alone, massage, physical therapy…useless.
Speaking of things settling. Thank goodness, my mind is not affected; yes the emotions are certainly
in a sensitive state. When I’m in my patio chair outdoors or my recliner chair, reading or just meditating I’m “right as rain”. But the lack of communication with brain and spinal column/muscles won’t let me move without a big upset. As we all know, if we don’t move, we are in more trouble. A “catch 22” for sure.
I’ve done so much research on stroke, I feel I know more than my therapists, and I use the university studies for my research more than the typical youtube stuff. The latest in my readings was about mindfulness and spasticity and how it can reduce symptoms. I’ve been doing a kind of mindfulness and prayer with absolutely no results and maybe I just have to keep at it.
Roland there’s nothing like the warmth of vinyl, but I fear if I was to put on a record I would scratch it to death with this cement hand…lol.
All we can do is struggle on , fight on, no let-up. But it can be so disconcerting.
Thank goodness for you and all our members here. The sharing of thoughts and empathy is good medicine.

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Derek,

I am amazed what you put up with. I feel in comparison I have no reason to complain.
I try to stay away from scans ; one can spend a lifetime looking for an anomaly. I’m interested in your attempts to sooth the mind with prayers, meditation etc. I certainly believe doing so gives our bodies a better chance… but when things are rigid and in a state of spasm, it’s hard to stay calm. Sometimes we’re so near an answer, but we can miss it if we’re not looking hard enough for signs of recovery. I mean to make a mental note of every improvement, and try and notice what helps and what worsens our condition. I’m sure you are a true warrior, and very methodical in this. Your painting tells me how neatly you organise your thinking.
10 months it took me to put on a record… and I’m expecting to ruin 1 soon. But hey.
The connection between brain and nerves/muscles is known to improve with time. Every time my paraesthesia screams at me, I remind myself (and more importantly I visualize) my muscles / nerves are screaming for new management to take over. They are screaming for some brain to take (firmer) control. Catch 22s are all over the place in our recovery. When I say to my Chinese dr. everyone is clueless about my eye… and he then says , no, nobody would know what I’m harping on about. I then suggested I was hyper-sensitive to things like my liver channel. Would you believe than I can feel the temperature of my right eyelashes? For some reason they are often hot. My hot eyelashes feel bizarre. Who can explain this condition, let alone make up such a story.

The work on mindfulness must be key. We cannot fix our bodies directly, but we can influence our minds (which in turn addresses the body). surely being “happy” will accelerate our mending? Our gut feelings and instinct provide the best guide possible… We must find a thread, however unlikely it may seem, that leads us a little closer to a solution. It’s not a black and white universe… but to be able to brighten our chances even by 1% is a priviledge.

I wish you every ounce of good luck.
Keep fighting my friend, ciao, Roland

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Again, this thread just shows how complex strokes are. They affect people very similarly, but also very differently. You see this with each of your own unique symptoms.

As many of you have already read my mother’s story, her issues were 80% mental (not speech or memory) – just very emotionally ill from her stroke. She recovered physically so well after a 1 year, it was remarkable. But, in the end, it meant nothing to her, as she just continued to regress mentally.

But, listen, you are all wanting to get better – and you always can, when you are conscious of that desire. Qigong is excellent, and includes visualizations, on top of light movements. And if you cannot do the light movements, you just visualize. Can be just as powerful. Also, sound healing is fantastic. You make vibration sounds. I believe that you all could benefit from Qigong. I do it every day, even though I never had a stroke (I was my mother’s caretaker 24/7 for 2 years after her stroke). It got me through some very tough days with her (when I could get an hour to myself).

Best of luck, Roland and Derek. Please don’t give up like my mother did. Please!!

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Matthew,

3-4 months after my stroke trust me, I did want to give up. I upset my wife often by pleading to die, and end my miserable life. I would scream in pain and fright almost every night. I would sleep 1 hour per night. My muscle tone was mush… mashed potato I would call it… when I slept all the skin from my torso would “melt” (it felt so) and droop down onto the bed. Eventually, I managed to sleep because I exercised until I improved my muscle tone. I gradually also improved my mind and morale. I am much more robust now. Bad days are challenging, still. What I wish to say is that I can understand the mental struggles your mother had to face. There are daunting problems to overcome. Mental strength is all.

Yes, Qigong is excellent. I love it and practise it. Good call.

I have the weirdest problems that you could imagine. Still, with each day, I settle more and more. Thank you for your input and story,
ciao, Roland

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You’re doing just fine somehow, despite all of your issues.

My mother had no mental strength at all, and her mind went over time. I don’t blame her at all - it wasn’t her fault. She was in her early 70’s, and she just couldn’t put the pieces of the puzzle back together. She wanted my father to do everything for her. We begged and pleaded with her, but her mind was made up. Her rational mind left her. She didn’t care that she recovered so well physically. We couldn’t do anything, so had to learn to let her go. My mother begged to die for 2 years, by the way. God bless her!

I wish you to get better and better and better. Please take care of yourself, and keep doing that Qigong. It can be “beyond powerful.”

With much love and healing,
Matthew

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Hi Outlander!

I know your pain via my mother’s stroke 2 years ago. My mother lived with such mental anguish after her stroke. She had no real physical pain, and recovered amazingly well on a physical level (could walk and talk normally, eat, do just about anything with her affected hand, could play games, had a great memory, etc). But none of that mattered because her emotional and rational mind were gone. Nothing I did worked for her (supplements, music, etc.) - she just flat-out gave up on life, and became fully dependent on my father and me. She just got worse and worse over time. I just don’t know what happened. I try not to be angry with her, because it wasn’t her fault. I wasn’t in her mind.

But that doesn’t have to be you, despite all of your issues and bad days. You have your mind, and a desire to get better, even though nothing helps much. Just keep on trying, knowing full well that others are living and haved lived what you are now living.

It’s weird that my mother never had the pain and muscle issues that many do. Her issues were mostly all mental, after her leg and hand came back. Speech came back perfectly in 3-4 months, and her memory was always excellent. Some stroke patients have terrible memory issues. Strokes affect every person very differently, even though some things are common among all. I’m afraid to say that my mother went insane after her stroke. It’s okay to say that, because that is what happened to her. I can’t sugarcoat it.

Best of luck to you.

With much love and healing,
Matthew

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@Matthew1798
@pando
Thank you both for your replies. It is so great to hear from you.
Matthew: I am so sorry about your mother. Yes, every stroke is different.
Roland: your first 3 months sound awful. Glad you got thru and are still fighting.
Matthew: kind of you to reach out God Bless.

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This site brings me closer to my mother. She would want me to connect to others who suffered what she suffered.

If you have any questions, just ask me. I studied strokes for 2 years. I’m no expert, but I think I knew more than her doctors. Seriously. I lived it for 2 years. My mother didn’t have memory issues, or any issues with muscles/pain/tingling after a few months. She did have sporadic confusion at times, and became very irrational about everyday things, as time what by. She also had jealously delusions that my father would leave her and put her in a care home (Othello Syndrome). Her apathy was beyond belief, and her OCD over temperature (hot and cold) would sometimes last 2 hours or more. She also paced like crazy at night, and became a complete insomniac (maybe slept 1 hour a night or less), bickering with my father about nothing. Unreal.

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Yes, all input appreciated,

My story is insanely long and complicated ; my BP was 268 / 198 while I was having a stroke, but that’s another story. My stroke has been the 3rd near death experience i have had.

Derek, I feel it’s only right that I mention the iTeracare Wand. I call it the magic wand and my wife and i use it on each other for 10 mins. every evening. As soon as it goes over any part of me which is affected (like you, my right side) I can feel it alleviate aches and pain. I can feel it, basically. It cost £340 approx. and what I am saying is that it helps me., personally. It really does something to me… though I’m not sure what or how it works. Many people will tell you it’s just hot air, and there’s no proof. Well, maybe so, but the internet is also full of enthusiastic testimonials.

speak soon, ciao, Roland

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Hi @pando. I do not think you can underestimate the power of a relatively good night’s sleep. Whether this is impaired by the stroke interfering with regulation of sleep patterns, anxiety, pain, patterns learnt by poor sleep hygiene whilst in hospital, or a combination of everything. The result of a fairly good night’s sleep is transformative to mood, ability, both cognitive and physical. The problem is when you raise the importance you equally raise the anxiety.
I sadly don’t have a fool proof solution. I get to a point where either know I cannot continue with another non existent nights sleep or have something upcoming that involves significant cognitive or physical input and take a pharmacy bought but not prescription medicine. It may be a placebo effect but when I know I’ve taken it I sleep and to wake the next day at 6 rather than 2 it allows so many opportunities. What I take is not addictive and I take it only on occasions as outlined. It is my coping strategy. I am lucky that I take no regular meds so do not need to be concerned re interactions.
I hope you continue to work your way through this with positive outcomes, all the best, Julia x

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Julia, hi
Yes, I agree with every word you said. The value of a good night’s sleep is priceless.
January was my nightmare month. 1 hour per night. Then one day in February came and I knew I would finally sleep. And I did so. And have done so every night since, in addition I have a half hour sleep after lunch.

It was a complete mystery. I wrote about it ( my book I am writing ) in real time. I predicted that the sleepless night had finished. And wrote as much. I carried on the chapter to make sure my sleep had returned. It had.

Now I sleep very well. It is needed every night.
Thanks for sharing
Good luck, and all the best to you too…

ciao Roland

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268/198 - oh my goodness!

I never heard of a bottom number that high.

So, you had a brain bleed, like my mother? My mother’s brain bleed was not from high blood pressure, but from having very low platelets.

You never know what may work, in terms of a supplement, exercise apparatus, etc.

Best of luck!

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Yes Matthew,

I had a bleed, and I know exactly what she might have felt durung the stroke. I have had high BP for years… thankfully they’ve managed to improve it considerably with meds.

Do you mean “you never know what may work…” in terms of keeping the BP in check?

Best of luck, u2

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Funny, I just wrote a reply on another post saying that better and worse days has become the ebb and flow I am accustomed to, and then I open up your post and see its title. I agree with you about a compromised immune system, this makes sense. I think many physical processes are compromised post-stroke, and this can lead to acquired conditions. I don’t share the exact same symptoms as you, but sure enough, I have similar pangs and pains that erupt at different times. When fatigued my right leg decides it isn’t going to work properly. This means I sort of have to consciously will it forward. It’s a similar sensation to you, as in it seizes or lock up. It’s a disconcerting feeling but since most of the damage to my brain was on the left (I had a bilateral stroke, so right and left damage), it makes sense that my right leg would falter.

I wonder if your eye pain might be related to NOP (Neuropathic ocular pain) and could be a result of connections being disrupted to or from the oculomotor part of the brain, at the back. I have lots of oculomotor related issues because of the relationship of the cerebellum and that function.

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Rupert, hi. I hate to think that, but it really feels like my immune system taken a hit (that’s an understatement). Thing is, maybe not, as my wife had a nasty cough for 2 months, and I never got it. On the other hand, like i wrote, i always have a runny nose at breakfast. I know it’s a common pattern for many people; body temp reduces at night, sniffs happen before and after bedtime, etc

My leg is a complete mystery. It has taken me a long time to establish some kind of understanding. I accept my condition now, and work with it, just gently trying to break the mould.

I absolutely do think my ocularmotor nerve and its connection to my brain is at the heart of my eye problems. My stroke is thought not to have touched my cerebellum but I get tired at night, and also dizzy, so I have suspected differently.

My good day / bad day cycle is so clearly defined ; it happens like clockwork

Thanks for your input,
good luck, ciao, Roland

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@pando @JuliaH @Rups @Matthew1798
The only thing that has improved for me was my horrible Double vision. For months it ruined my balance
and I tried wearing a patch. I went to a wonderful ophthalmologist who got me on graduated “Prism” lenses. I am now down to the weakest lens and see great.
Yesterday my PT therapist was moving my arm and leg around (right side) on a table. She said you have good movement and could not understand my complaints about spasticity. I tried to explain to her that it felt like I had shots of novacane from the dentist all down my right side. and I also described it like being filled with cement and at the same time being almost completely numb. She didn’t seem to “get it”. It is so hard to describe to people.
My back is out this morning thanks to bending over to put things in the oven. Going to be a tough day.

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I just want to add, that for me, one of the greatest disheartening consequences of stroke is the fear that compromised processes and systems will result in me having to face premature and compounded ill-effects of entropy and potential life debilitating problems. That is something that brings me deep moments of personal disquiet.

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Hi Derek,

hope your back will go a bit better / I’m also on a bad today (yesterday was good)
I have a little bit of double vision in the morning, lately, for a few minutes

Interesting the PT was puzzled about your spasticity complaints. I get the same… nothing looks too bad, but of course, it is (how bad depends on the day)

One day, a long time from now, more will be understood about strokes
Ciao, Roland

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Hi Simon,

definitely some interesting similarities there. I agree it’s probably coincidence. Anway, possibly there is a connection.

liginal discomfort; you mean inguinal ? That’s very possibly the liver channel which does go from toe to eye, via the inguinal area. By the way, urge to defecate compromised, yes, I have that too. At least enough confusion that I can’t tell clearly. I’ve had problems connected with the liver channel for years before my stroke… but my current set of problems along my liver channel are all since my stroke.

Bristle on the inside of your eyelid is exactly what I feel. Is this because of your scratch on the cornea? Anyway, it’s the closest thing I’ve heard to my problem. Interesting.

Also, a fellow Forther !! I’ve forgotten most of my Forth ; but I wrote Forth back in the day 1982 or so… Lovely language. Acorn Atom / BBC micro ; I never owned the hardware ! I did have a Sinclair QL.

Yeah, that’s a very retro looking Amp (because it is) !!

BTW , Streaming with DSD512 I would not be confident… I know the technology is there, though.

Speak soon, ciao, ciao, Roland

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