Sad for a bad day after 5 days better in a row

[roccello]

Hi Stroke survivors.
In previous posts I have shared my story which resumes in: two month ago (February 4th 2024) small ischemic stroke in the cerebellum caused by a vertebral artery dissection, caused by quiropractic maneuvers. My symptoms were mainly vertigo and nausea, I also had some neck pain.
After being discharged from the hospital with clopidogrel for 21 days and no limit aspirin 100mg I was also prescribed with statins. My total Cholesterol was 5.53 LDL was 3.6 and hdl 1.42 which I think was not very high but still I was put on atorvastatin 80mg per day which have put me in statin hell. For my first control they changed the atorvastatin to rosuvastatin 40 mg, by this moment my total collesterol have dropped to 2.48, ldl 1.31, hdl 0.93. I really don’t know why they did not lower my statin to half at least because muscle pain and dizziness are part of my statin hell every day.
I started taking half of rosuvastatin for a couple of days and felt better, way better. This week was grea, I have to point that I moved to my mom’s house a month ago because I thought that being alone was a bit dangerous and I felt so scared with the backlashes of my stroke and have lived ins her home since then eventhough I keep my apartment. The day before yesterday I was feeling so great that I even dared to drive my moms car for a couple of blocks while going to an appoinment, went for a long walk with my dogs that evening. Yesterday I went out with my girlfriend with her 6 year old son and her mom to run some errands and even took them for a coffee. I had a green tea since it was a bit late for coffee. A bit later I walked with my sister to receive her daughter from the schools. I was almost preparing to set a date to go back to my home but then bam!, reality hit me.
After my girlfriend left me at my mom’s home I had some dinner, took my everyday statin (Rosuvastatin 20mg) a couple of hours later when lying in bed watching some tv I felt that awful fainting spell which scared me for a bit and then felt cold and dizzy again. Las night I slept vey lightly waking up multiple times during the night, my pulse was a bit up (89-95, normally 58-65) I felt some paresthesia down my head and arms and had a really bad night. I woke up this morning felling like I had a hangover, muscle and joint pain, still deezy and with some inestability. Is not the fist time that this symptoms present but I feel so sad because I really thought I was ready to say, here we go. Back to being me again!

I know is early in my recovery but obviously this sends me back to square one, I don’t have the confidence to move back to my home, I feel sick and so diminished again, and of course I thought that it was another stroke, I still think it some how even though I tell myself is not as bad as it was two months before . Eating makes me feel better but the “hangover” is still there. And I feel so sad and somehow anxious.Is this going to change or be better and more stable?

All your experience will really help.

Best for all of you facing this.

[SimonInEdinburgh]

Hi @roccello
There are lots of maybes.
A lot of what you describe could be combinations of fatigue and anxiety. Anxiety does not necessarily mean feeling timid and scared it’s a bodily reaction that can come on subconsciously

You’ve also described doing a lot such as driving which could easily have resulted in fatigue which is not feeling sleepy or that you have to sit down and rest for a hour or two and then you’re ok.

It could also be what the medical profession unhelpfully called a decompensation which AFAICT simply means more stroke symptoms that aren’t.

I think all of us have had dizzy or other difficult to properly pigeonhole symptoms but no explainable reason.

You might also search on here for all of the discussions on statins being a unhelpful even dangerous. There is a lot of conspiracy theory around them. If your stroke was caused by a dissection and statins if they are indicated at all would be for a ischaemic stroke you might consider challenging the medical team to justify them in your case

2¢
Caio
Simon

[Mrs5K]

@roccello If i was a betting person i’d say you have overdone it & fatigue has caught up with you. We have to try & avoid the boom & bust cycle by pacing ourselves even on the days when you feel ok. This leaflet might help explain it a bit for you.

Fatigue and tiredness

I am 2 years plus in and still have to pace else I’m fatigued for days.

You did a lot in a short space of time & driving in particular would require a significant amount of concentration. Try cutting back on your activity a little, find a level that works for you stick with it for a while then slowly increase it & see how you get on. You will find there will be many ups & downs along the recovery path but that doesn’t mean you’re back to square one. It’s very frustrating but you’ll get there in time.

If you are ever concerned about your symptoms though you must get yourself checked out.

Best wishes

Ann

[clibbers1]

You are doing far too much, You must rest, I know it is difficult but you have to look at your recovery long term. After a year I can’t talk to more than 2 people at the same time, can drive but 20 minutes is my limit. If I’d had done what you have I’d be in bed for 3 days. Try and ration who you see and what you do on a daily basis, you can’t do it all however much you want to.

[Rups]

As a cerebellar stroke rewirer three years on, what I can recommend is tapping into mindfulness, this will give you the skills to manage symptoms when they arise and to have a little peace of mind. My stroke consultant advised me not to check blood pressure and all that stuff because he thought it wasn’t really useful. I stopped, and it was actually better not to be constantly monitoring myself. Pulse, blood pressure will fluctuate, stress and anxiety can affect that, Zen breathing is a good practice to lower the heart rate and help with grounding. There is no back to square one, or going backwards, the brain doesn’t heal that way unless the forward momentum is challenged by purposeful degeneration. Keeping a stroke diary can help you put your progress in perspective, to see it written down, almost like a timeline. I kept one and found it, absolutely, useful in seeing just how far I had progressed even though in my mind, sometimes, it felt like I was getting worse. As one improves the quality of one’s life, the terrible moments are amplified because the gaps in-between are seemingly a measure of how one should be now. When everything is askew, it all feels the same and one looks for the moments when life is not like that. If you were an unlucky gambler and always losing, you’d be used to losing, and would only seek out the times when a win was possible. If you were a lucky gambler, a loss would be so much harder to bear, and you would question your winning streak and your ability to be lucky. That’s how I see progress.

[Suzywong]

Hi there I think I agree wx all the others . I think it was caused by fatigue . You had done a lot . I know when I’ve had my grandchildren and done a lot wx them I feel absolutely cream crackers for next day or so. Just remember to try and pace yourself . Best wishes Suzywong

[roccello]

Hi @Rups thanks for your answer.
I understand that you had a artery dissection, may I ask did it healed? How was your recovery in that regard?
I know is very premature for me right know and doctors say that it will take 6 to 8 months for it to heal, but I still get some neck pains close to the area where the dissection took place and of course I get a bit frightened. I have been very careful not to move my neck unnecessarily but trying to have a normal movement in daily activities (the small ones I’m doing).
Your experience would help me a lot.

[roccello]

Thank you all for your for your answers and words of support. This is definitely a place where we can find a bit of peace about everything we are going through.

Best to you all

[Rups]

Aye, it healed and that is what caused the clot as it healed, the artery dissection was in the brachial artery which formed a seven inch thrombosis which became embolic and those little blood clots travelled up my arm and got banked up both sides of my cerebellum. Six TIAs before it finally clotted too much and a stroke followed.

If you are on anti-platelet medication, it will help keep the artery blood passages flowing along. We all have this fear, I suspect, in some degrees. Even three years on, if I get a little giddy, I get a little panicky. Cerebellar stroke syndrome is part of what makes it difficult for cerebellar stroke survivors, the resulting symptoms mirror the cause symptoms. I spend a lot of my day, comparatively, managing fear. However, I don’t allow it to control my life. I do recognise now, the difference between the symptoms I have and the stroke symptoms I had. That’s a fundamental key to backing off anxiety. Anxiety and fear cause havoc, and just make everything worse.

Cerebellar stroke is quite rare, if I were to have another, I’d ask one of the hospital staff to go out and buy me a lotto ticket. There is nothing wrong with being physically gentle with oneself, and having purposeful movement. As far as I know, touch wood, my heart is fine, my lungs are fine, my eyes are fine, my ears are fine, my intestines and stomach are fine, my bowels are fine, and all the other bits of offal are okay, so it’s only my brain misfiring that tricks me into thinking something is terribly wrong.

After some time, you will become more confident with your situation, you will soon start to forget this period and as you progress, managing anxiety will become second nature, and you’ll be doing stuff without even thinking that you have had a stroke. Everyone is different though, each stroke affects each survivor in a different way but with similar symptoms, and how we manage that depends on the person.

[roccello]

Thanks a lot @Rups
Mine was in vertebral artery caused by neck manipulation. Who would know how things can get complicated like that.
I like to think that the way Im responding to statins is bad and Im kind of decompensated from low colesterol because I have muscle and joint aches almost all the time and feel so exhausted. I need to have more patience. I run my own company and thankfully I have a good six month runway at least. I suppose I have to be thankful and take the opportunity to “retire” for a bit and give myself the chance to heal.
Once again thanks a lot to all pf you for being there for everyone.

[rodkay]

Hello - what you describe I can say I have felt too. I am just about 2 years since my stroke and what others have said - pacing is critical - learning to know when you have done too much and to stop and rest is a major step to sustaining a new pace you can cope with. As for statin - yep totally get statin hell - I’ve just been reduced back to 10mg of Rosuvastatin - not tolerating 20mg at all and really really not getting on with atorvastatin. Splitting and banging headaches, nausea, muscle aching, dizziness, fatigue, tinnitus, bloating, feeling flat, loss of labido - had them all . . . . at the same time! I did try 10mg or Rosuvastatin for a while and I coped on that - though the GP would prefer me on 20mg. Also trying really hard to change my diet to reduce cholesterol (which was only 4, before my stroke) so that the 10mg is all I need moving forward. Its all a bit of trial and error but keep persisting and working with your GP - like me I am quite certain with time we will find the right solution. Good luck!

[roccello]

Thanks a lot for your response @rodkay
I thought I was the only one having this strange side effects with statins, even though I have read a lot about it online. I was first put on atorvastatin 80mg for about four weeks and it got very ugly. Then I was put on rosuvastatin 40mg and I thought that was cuting half the dose but no, 80mg atorvastatin is the highest dose for that statin, but 40mg is also the highest for rosuvastatin so for a few days I was better but I suppose that when rosuvastatin kicked in I began to suffer it side effects again.
My LDL colesterol is not that high. Here the colesterol level are as follow:
Optimun: below 100
Almost optimun: 100 to 129
Moderate: 130 to 159
High: 160 to 189
Very High: above 190
The day of my stroke my ldl was 141 and for the first control appointment it went down to 51 with hdl below 36 (normal above 40).
So I get that protocol is to lower your colesterol after a stroke but I feel it is kind of abrupt to put someone and keep it at the higher doses of a statin, specially when it is significantly affecting life so bad.
My girlfriend’s mom has colesterol about 300 ldl about 250 and is on rosuvastatin 20mg 3 times a week, sonI dont get why so high the dose for me specially when my stroke was caused by traumatic manipulation and turn on my neck that caused a vertebral artery dissection which caused the cerebellar stroke.
Anyway I really thank you for your respinse so I dont feel so alone in this regard.

Best to you all #strokesurvivors

[SimonInEdinburgh]

Prescribing a statin is a knee jerk reaction by the medical frontline spurred on by the drug companies.

LDL and HDL perform a vital role in the body and there are some that say statins are damaging.
Certainly their side effects are widely reported.
A dissection from a physical cause certainly doesn’t sound like justification for medication applied after a clot!

There’s a good deal of folklore mixed with uncertainty complexity tradition and vested interest.

thincs.org is a community of sceptics where you’ll get one side of the story

I take a 40 mg of atruvostatin down from 80 because my GP said “youlle probably die of something else than the difference between 40 and 80 will make” ¡!

Caio
Simon

It could well be in the realms of climate change as an arguement that appears different to different folk w/ strongly held views that owe more to religion than analysis

[rodkay]

Thanks for the response - my GP told me this week that NICE (medical standards) has just issued new guidelines that some statin is better than no statin. So I’m sticking with my 10mg, exercise and eating cholesterol helping food and see how I go - got to say I feel more myself after coming down from 20mg! Good luck. R

[roccello]

So nice to hear that.
I want to exercise myself but I just cant find the energy to do so.
I skipped my rosuvastatin dose the day before yesterday (I take it with dinner about 7:00pm) and yesterday was a better day. Took it last night and today’s morning and so far I got back those dizzy feelings, muscle pains, headaches and paresthesia, some nausea and obviously one thinks: is it the statin from last night or the skipped dose that is bringing another stroke?
I have a control appointment May 3, 3 months after my stroke, April 30 an mri scheduled. What am I supposed to tell the doctor? I really think statins are the reason for the 80% of what Im feeling, I feel so not me and very frustrated with this.

@SimonInEdinburgh I do think that there is a lot of business regarding statins that wont allow science to go deeper into this matter. Meanwhile we suffer day to day not knowing if this is stroke or statin related.

[Rups]

Aye, I echo Simon, with ischaemic stroke its, here have some anti-platelet meds and some statins, and hopefully it won’t happen again. I’ve managed to knock mine down to 5mg, I didn’t have cholesterol issues before stroke, well, not that was ever flagged by my GP after my check-ups. My GP seems open to having me go off them, and I guess that has to be done by way of evidence. There are alternatives to statins which you may already be familiar with, so discussing these with your GP might prove useful if they are flexible enough to agree to it.

Addendum: I have changed the link because the link I put in was another page from the same website I was reading.