Hi, I had both an X-ray and CT scan but neither showed any scarring.
Hello, just got a response from a Professor Sharma from the Different Strokes website ...
"A cerebellar stroke, in itself, does not affect breathing. However, as stroke can affect other parts of the brain, it may be that there is also some damage to the brainstem which can affect breathing. Often the breathing symptoms may simply be related to other associated medical conditions with stroke, such as heart disease or obesity. If the breathing is causing an issue, it would be worth getting the GP to check whether there are other causes."
So, this is interesting as fatigue is not mentioned, and whether fatigue might be at the root of the breathlessness. So, the mystery remains, whether just part and parcel of general stroke damage, specific to the cerebellum, statins or from some other cause. I did not have any damage to the brain stem, but I wonder how much communication goes on between the cerebellum and brain stem. I still have a view that it has something to do with cerebellar obstructive breathing and fatigue. How are you going off the statins now? How's your breathing?
Update on dyspnoea, cerebellar stroke. I went to the hospital the other day, had a chest x-ray and a respiratory assessment. I performed well on the respiratory assessment, actually taking in a full extra litre of air on my final inhalation. I then had a meeting with my consultant. There was nothing apparent with my lungs or diaphragm that pointed toward dyspnoea. We spoke about statin-induced diaphragmatic weakness, he said that it was unlikely as it is quite uncommon. I did mention that cerebellar strokes are uncommon, and I had one. However, I mentioned the cerebellum taking in emergency air and misifiring causing breathlessness, he did say that this could be possible. This might occur when fatigued, or when fatigue or anxiety arises. It would only take one laboured breath with a bit of anxiety or difficulty, and the cerebellum would kick in suspecting needing air but having been damaged it can't manage the "obstructed breathing" as it would if undamaged. This is just speculation, but it was interesting that he conceded that this was not improbable.
Anyway, the dyspnoea I have is still ongoing. I notice it improves with a change of my posture which makes sense because I give my lungs maximum capacity, and oddly enough, brushing my teeth. This may be because when I am brushing my teeth I tend to zone out and let my mind wander in the moment. I have started taking notes on when it occurs, what relieves it, and how long it lasts for.
Hi Rups - occassinal breathlessness improving day by day. I'm convinced that most of the issues that I have been experiencing for the last six months are a direct consequence of the statins - which I stopped taking just over a month ago. I'm finally beginning to feel like normal service is being resumed. Neither the GP nor the Neurologist have taken issue with my actions and they persist with their collective head in the sand regarding the potential side effect of statins. My GP has just sent me a link to NHS guidance on a balanced diet to help lower cholestoerol ...but my LDL cholesterol has never been high anyway (@ 3.4 on admission to hospital) and after 9 months on the statins the LDL is currently 2.9 ... so a slight improvement ...but that might also be down to lifestyle (what lifestyle ?) and diet !
That's good to hear. I posted an update on dyspnoea under breathlessness. I too have ditched the statins. This is my father's response when I told him I was stopping statins, he's 83 ... "I think it wise to give up the 'statins' I myself have not much confidence in them. I'm of the opinion that red wine is the answer to such problems, and garlic of course. Never forget the garlic. I am fortunate enough not to be on any medications, save of course the two aforementioned super medications. Home brew is also very rich in vitamins in particular B12." 
I think it may be a complication of statins, cerebellar damgae, and fatigue. This is my theory ... the statins produce muscle weakness (including diaphramatic weakness). When we take a breath, and the weakness struggles to take in a full amount, the cerebellum kicks in thinking there is an obstruction, being damaged it exerts itself to communicate properly, and therefore, the result is a laboured breath. It's only a hypothsis, of course.
hi, i am nearly 5 months post stroke, and finding breathlessness is quite a thing at present, which also brings on a fair amount of "unexpected fatigue",, on 80mg atorvastatin, feeling much more breathless, anxious, fatigued, than the first three months,, thanks,
I have had the same odd breathing feeling since my stroke 3 years ago. I don't get "out of breath", but I feel like I can't take a full breath--almost like there's a band around my chest restricting its expansion. Then I relax a little, and I can finally fill the top part of my chest and get that "cleansing breath" feeling, a full breath. I kind of think it may be from having residual anxiety caused by the whole stroke experience. The docs listen to my breathing and heart and all seems fine there. I also wonder if maybe the stroke also weakened the muscles in the chest area, since my left side was paralyzed for a while. Maybe it would be a benefit to practice breathing exercises. Does anyone know of any? 
Also, a little side thing that accompanied all this is that I could not stand the feeling of wearing a bra after my stroke. The band drove me crazy. I felt like I was being squeezed and suffocated. I have eventually made myself reacclimate to the bra, but I still don't like the feeling of it. Thanks. Jeanne
I have the same problem with taking deep breaths since my stroke. What breathing exercises do you do? Thanks. Jeanne
Dear Jeanne
I have benefited from doing breathing exercises every morning. I do those recommended by the BHF, those of us in rehab call them huff n puff. They are a set of five exercises, all seated, taking less than ten minutes. I needed these exercises, initially to reflate my lungs after heart surgery. But they seem to be a good idea for me to keep them going. I also take a gentle walk six days a week. Ideally chatting whilst I walk.
best wishes
colin
We're trying to narrow down causes for this because it's pretty uncomfortable. Your statin amount is quite high, I was on 40mg. Some people don't have any reaction to statins, some people have reaction to certain statins. In my opinion it is not the statins alone, but maybe something exacerbated by them. It wouldn't do you any harm to see your GP, and try another statin or statin alternative, and see what happens. My cholesterol levels were fine, but they put me on statins as a precaution. I generally have a healthy diet, but I guess they wanted to cover all bases. It's the same with Clopidogrel and me, they didn't identify the cause of my stroke, so put me on anti-platelet medication as a precaution, for all they know the stroke I had could have been a one-off caused by trauma. Still, I won't be going off the Clopidogrel.
More and more, I am discovering the alarming and puzzling bodily reactions to post stroke.
Hello Jeanne, hope you are okay. I do the typical deep breathing exercises, so breathing down to my belly (one hand on belly) and up to my chest, take a little extra breath, and then breath out in multiple blows. I then change position, so do it lying down, sitting up, and standing up. It does help.
This is part of controlled breathing, there are lots of examples online.
That's exactly how I see it - but still think it's more the statins that have caused the overall muscle weakness - including diaphramatic - rather than an after effect of the stroke. My breathing problem did not happen until about month 4 post-stroke - about the same time as I noticed a marked 'feeling' of muscle weakness - which started deep in the muscles in my arms and legs but then 'spread' to become less defined but equally debilitating in other parts of my body. Fortunately my stroke did not affect my strength - indeed I passed all the typical strength tests everytime the docs decided to give me the once-over during the two weeks I was in hospital. I can't really comment on what it is like to wear a bra - my wife (and children) would probably have serious concerns for my mental and physical wellbeing if I were to rummage through her underwear drawers 
Brilliant - and thanks for those wise words from your Dad. I had to laugh - my elder sister has been on statins for a number of years but she still swears by a glass of red wine a night. Not sure about the garlic though - although my wife often adds garlic when cooking. I suspect your theory is spot on !
M & S now do bras without any wiring or tight banding. There have just a stretchy piece of material in the same material as the bra. Similar consistency to their knicker material.
Thanks, Colin, for your comments. I'll look into finding the exercises. Love, Jeanne
Thanks! I just tried this and will practice it going forward.
Love, Jeanne
Thank you! I will look into them. Love, Jeanne
I've also seem similar in Sainsburys that sell Tu clothing. So worth having a look on their website too.
Hello Jeanne, this is exactly the problem we face, dyspnoea. You've probably read the statin debate on here. What kind of stroke did you have? Are you on statins? I had a full respiratory assessment including a chest x-ray at the hospital. Since stopping statins, I must admit breathing has got a little easier, and that "cleansing breath" has subsided but not completely vanished. It is always possible to switch to another type of statin without any adverse effects to cholesterol levels. This could also possibly be a placebo, but at the moment, I am going with it. I do think it may be a combination of things, such as statins, fatigue, anxiety, and whatever issues the brain has had with repair.
My breathing issues occured at about the same time (four months after), I remember distinctly the night of sucking in air before turning over in bed. This coincided shortly after with a severe nerve pain in my leg. Once I stopped the statins, the nerve pain went away a few days after, and also the frequent need to urinate at night which was driving me barmy. I too have had no issues with muscular strength after my stroke, in fact, about two months after, a friend delivered about eighteen boxes of books he was storing for me. I managed to carry each one up two flights of stairs with no problem at all, apart from my visual and balance issues.