Breathlessness

About stroke Medication and treatments
1

Since my stroke last August I have suffered with breathlessness.when out walking I can only walk severayardswithout having to stop to allow my rapid breathing to subside. The same when I visit the toilet walking from my lounge. Even when getting. Out of bed in the morningI have to sit and wait for my "panting" to stop.
I understand fatigue and breathlessness are a common problem with stroke victims but did wonder if my blood thinning medication was causing this excessive breathing problem ?

Waddo 

 

 


 

 

2

Hi Waddo-  I've been on blood thinners for 3 years. I don't think they affect breathlessness at all.  I know everything is so much harder for me to do since my stroke that my body reacts as though I'm doing nuch more than I am.  But still, it might be good to have your doctor check it out. heart Jeanne

3

Hello Waddo,

I can't confirm for regular strokes, but the stroke I had, cerebellar stroke has left me with a reduced respiratory drive which is a common symptom. This means, particularly when fatigued I get breathless even if not doing anything really physical. I can get breathless just being in bed at night. This is because the cerebellum manages involuntary breathing, whereas the cerebrum manages voluntary breathing (deep breaths). If you didn't have a cerebellar stroke, it could mean that the part of the cerebrum that communicates with your otherwise healthy cerebellum is having some confusion with communicating regular breathing. 

I have to stop and take deep breaths in order to regulate my breathing, otherwise I get very huffy and it gets quite constricting, quite uncomfortable and unnerving. I am on clopidogrel, and breathing problems are not one of the adverse effects.

4

A request for some feedback on the issue of breathlessness - I'm 66 and seven months post (cerrubellar) stroke and for the first three months the recovery was going well but then fatigue set in and in particular I noticed a sudden and pronounced onset of a feeling of weakness in leg and arm muscles. I am trying to figure out whether this is a general fatigue issue as a consequence of the stroke or perhaps a side-effect of a medication - possibly the Atorvastatin. (I have been on an 80mg/day dose which I understand is the highest recommended - and statins do seem to have a case to answer when it comes to muscle fatigue) I had not previously had any issues with physical strength and my stroke did not result in any paralysis - just a strange touch and temperature sensation down my right arm, trunk and leg. This is on-going but hopefully is resolving - or I'm just getting used to it. The feeling of weakness in my muscles is now also less pronounced however it has morphed into a more general body weakness. The best description I have found is on the heartuk.org web-site which (under Statin side-effects) describes it as like having a bout of flu but without the high temperature and headaches. What I am trying to figure out is whether it is possible that the muscle weakness (if a side-effect of the Statin) may be affecting not only my main body muscles but also to a lesser degree the 'internal' muscles (particularly the diaghram) and this in turn is resulting in a shortness of breath which can be quite debilitating. I don't get 'out of breath' but at times I find myself struggling to take a full breath. This happens even if I am only sitting working at my computer. Unfortunately it seems that you can't force yourself to take a deep breath - but I have found that it will (eventually) happen if I take time out to relax. I have no breathing/sleeping problems at night - presumably because I am in a fully relaxed state. So the breathlessness is also possibly stress related. As my GP recently remarked - there's a lot going on here - (an understatement if ever there was) but is otherwise unable or unwilling to make a diagnosis. My Neurologist has belatedly agreed to a reduction in the Statin to 40mg/day so this is a work in progress - but I thought I'd ask anyway to see if anyone has had a similar experience. Thanks for any contributions.  

5

I think statins do have a lot to answer for. I tried 3 types, simvastatin, atorvastatin and another which I forget the name of. Maybe suggest an alternative to your gp. Subsequently, I have stopped statins altogether and currently on ezetimibe for cholestorol control. 

Dont suffer, try alternatives to see which suits you best. 

6

Some people have a strong reaction to statins as far as muscle weakness goes.  I have a friend that lost the ability to walk and it was found that statins were the cause.  When he stopped the statins he regained his muscle strength.   I also have heard that taking COQ10 vitamin help replenish whatever statins take away that hurts the muscles, and help to combat the muscle weakness. A lot of folks take COQ10 if they are taking statins. You might want to research this.  Hope this helps.  Jeanne

7

I cannot tolerate statins- stomach aches.  I take estimibe(Zetia) and niacin instead.smiley Jeanne

8

Hello, you wrote, "Unfortunately it seems that you can't force yourself to take a deep breath - but I have found that it will (eventually) happen if I take time out to relax." - this is because the cerebellum manages breathing that is associated with "needing air". So, the brainstem controls natural breathing, the cerebrum manages voluntary breathing, and the cerebellum takes care of survival instinct breathing when you need or think you need to take a breath. So, if we were drowning, the cerebellum is the part of the brain that would step in and cause us to take a breath above water. We have a reduced respitarory drive, unfortunately, it isn't serious as far as I know, but it certainly is uncomfortable. I do breathing exercises, I suspect it is the only way to empower control over our breathlessness. 

The thing about cerebellar stroke as opposed to a cerebrum stroke is most of the symptoms we get are related to survival functioning, it is the primitive brain beneath the evolved brain. So, theoretically, we should be able to use the cerebrum to control what we now lack in the cerebellum, but the difficult part is that the cerebellum is all those instinctive controls connected to the vestibular system that we take for granted as part of our basic functioning.

 

9

Hi, just noticed this on breathlessness and thought I'd add my two penn'orth.

It's now nearly two years since we moved up here to the Midlands and within days I had a slight stroke, affecting my right leg. This was followed by a couple of other issues, including diagnosis with rheumatoid arthritis for which I am now on Methotrexate (a fairly powerful drug often used in cancer treatment).

I've tried to get back to my old routine of taking our dog out for an afternoon walk but some days I just can't go far due to breathlessness. Pre-stroke, I used to walk 3-5 miles with her, now the distance is decreasing rapidly and I feel lucky if I manage a mile or more, always with accompanying breathlessness.

What I don't know is whether the breathlessness is down to the stroke or the rheumatoid arthritis/Methotrexate? The hospital puts it down to 'general debility', whatever that is and has referred me for physio but I have no idea when that will happen as we're already several months down the line from that appointment.

Have any other stroke survivors had this experience? I'd be interested to know. 

10

Rheumatoid arthritis can cause shortness of breath if there has been scarring in the lungs, I am lead to believe. Check the adverse effects of Methotrexate, and if breathlessness is not on there, I doubt it is the meds. Stroke can also cause breathlessness, but it's diffierents types of breathlessness for different types of stroke depending also where on the brain the damage was done.

11

Thanks Jeanne - an interesting point about the COQ10 as until yesterday I'd never heard of this. I had been talking to a friend of the family who I've not spoken to in a few months and it was him who - completely unprompted - mentioned that a chap he knows is taking Statins and COQ10. My initial reaction is to say ' so why should I take yet more medication to counter an issue with an existing medication ?' But I'm not discounting it out of hand - I will look into it. b/w Robert

12

Hi Rups - I was hoping that you might pick up on my latest post - so many thanks for taking time out to reply. That said ... phew ... I've had to read it a few times to get the gist. So more likely the breathlessness is a consequence of the stroke rather than the muscle-weakening side-effect of the statins .... or any of the other meds. That's a pity - so no quick solution then. As you say - when my breathlessness first set in it was more alarming than 'serious' but this leads to anxiety which probably doen't help. It is certainly an 'uncomfortable' feeling and the feeling of relief when managing a full depth breath is truly palpable. My daughter has been prompting me to seek alternative/complimentary therapies but thus far I have countered that there does not seem to be much point whilst we are still trying to find out what is happening (or not happening) as a consequence of the stroke and what is a consequence of the medication. In this day and age of 'mindfullness' therapies I wonder whether there is some form of meditation that might help those of us living with the effects of a cerebellar stroke ? R  

13

Thanks for your contribution - much appreciated. I have a consultation with a Haematologist next week - will see what they have to say. I've noticed a couple of mentions of Ezetimibe in various posts on the SA forum - I've no idea what it is .... but will now do some further research. 

14

Well, that said there is (SILI), which is statin-induced lung injury. It's not common though, and I am not sure but I think it comes with other symptoms like a cough and fever, so if you are getting that combination then I would press further medical tests. Some meds can also cause respitarory depression, especially some CNS depressants. I always check sites like: https://bnf.nice.org.uk/interaction/ whenever offered a medication because although one medication on its own may not have the adverse effect, it may in combination with another. I've had a few GPs not check this and I've pulled them up on it and made them switch medication.

Nothing in this post stroke life seems certain but we have to deduce shrewdly in order to eliminate worry and fears.

However, on a purely stroke basis, reduced respitarory drive and cerebellar stroke is common. I have it and I am pretty sure it has no relation to the statins I am taking. You can ask for a respitarory assessment through your GP as a referral. It is done at the hospital.

So, back to the stroke symptom, the only thing that has worked for me is breathing exercises and learning breathing control. Because we can take back control of it, it just takes practice.

There are lots of resources online, this one is from the NHS (https://www.uhb.nhs.uk/Downloads/pdf/PiBreathingExercises.pdf).

At the end of the day, it is fixable. If it is not a serious underlying condition, we can still breath, and that is the main thing. We just need the cerebrum to take over some of that responsibility.

Anxiety magnifies everything, and also if you are focussing too much on it, it can make breathing more laboured because you think you need more oxygen, so the cerebellum kicks in and tries to take in emergency air and because of the misfiring of communication it becomes very laboured and you feel breathless - Catch-22. Remember, that even if you think you aren't thinking about something, even just a quick thought will get the cogs ruminating in the background. Like with panic attacks, they have worked out that panics aren't instant, sometimes the seed is planted hours beforehand or even days. 

I noticed my change at about the third month in, I needed to take a deep breath when turning in bed. Since then, it has become pretty regular and uncomfortable but not distressing. I did a fair amount of research into it because like you I was alarmed. However, at the same time, I had trouble swallowing saliva. So, I practiced for a month or two, swallowing, and also swallowing with a small amount of liquid. Nowadays, I can swallow fine. I think I retrained my brain to swallow because that too was fairly uncomfortable.

15

Hi Rups. I've currently stopped taking my statins by way of trial and error - my GP is aware but has not sought to deter me - to see if the muscle weakness improves. Only 10 days in so a work in progress. At risk of overthinking things I have a theory that as well as affecting the main skeletal muscles the statins might also be affecting my diaphram and hence when tired or stressed the breathing issue starts. It certainly helps to stop and rest and it doesn't take long before a deep and fulfilling breath brings with it a palpable relief. I don't have any concern that there is anything more in this than either fatigue related to the stroke and/or the statins. Or both ! 

16

Sounds like an interesting course of action, it could be that the statins are exacerbating already weakened muscle tone and function, as the cerebellum plays a role in this. I am on Atorvastatin 40 mg, I don't really know why I was put on these, as a preventative I guess, as my cholesterol levels were fine. I know several other cerebellar stroke survivors who suffer from breathlessness, one nine years on! So please, keep me posted on your progress, and how you get on. I, personally, don't feel a need for them, but I did ask the consultant, and he advised me to stay on them, but I might ask him again next time, and I could do with reducing the amount of meds on my bedside table!

17

FYI "Statin-induced myopathy is a rare cause of diaphragmatic weakness. It should be considered in patients on statins presenting with muscle pain and unexplained dyspnea." - Chest Journal. 

How's your breathing now you've stopped the statins for a bit?

18

I have noticed that over the last three weeks i have been getting slightly out of breath could be old age ? but it's a strange one.

19

Thanks again Rups - I am about to arrange a consultation with a private Neurologist so it will be interesting to see what his take on this might be. Another week on since your post and I am still having ok days and not so ok days - which seem to alternate. Maybe I tend to slightly overdo things on the ok days. The body/muscle ache and general fatigue (and intermittent breathless sensation) is still a part of my everyday but I'm pretty sure that all of these symptoms are linked as when I don't feel short of breath my head is a lot clearer and I just feel so much better. Also the muscle ache is less of a problem. I understand that it should only take 3 days for the Statins to leave the body when the dose is stopped ... but my theory is that as I have been taking a high dose statin for almost 9 months it could take a couple of months to 'undo' any damage ... that's assuming that there are no long term consequences such as muscle myopathy. Will let you know how it goes. 

20

Interestingly enough, I accidentally went off my statins. I had put through an online order for my repeat prescriptions. I recieved a confirmation email, and thought everything was okay. I waited the 48 hrs, and my prescriptions didn't arrive, so I gave them a day or two extra leeway before calling. I had to then wait another five more days without the statins. So, I thought I would leave it, and see what happens. Immediately, nerve pain I had been enduring in my left leg went away. So, this was a positive. I am not sure how it will affect the dyspnoea, like you, I have been on statins for about ten months. There could be time needed to regain strength back, or  rejuvenate any incapacity caused. it's hard to judge at this stage, I felt a little better breathing wise, but that could be a placebo. And since that feeling, the same malaise has resurfaced at various times. I have noticed that during fatigue it is worse, but fatigue is a strange beast in that it has degrees of intensity during the day, so even a slight feeling of fatigue will bring on a feeling of breathlessness, also, I think anxiety and focussing on it makes it worse, and this is almost uncontrollable at the time before it carries one away into the worst of it. This would explain the cerebellum dealing with "obstructive breathing" because if you feel you can't breath, the cerebellum would normally kick in to take in emergency air, but with a damaged cerebellum, this control would likely misfire, and the breath would be laboured because it would have to pass over to the cerebrum to pick up the slack. If you know what I mean.  

I have just had a chest x-ray, and am due to see my stroke consultant on the 18th of August (all going according to plan), I have also asked an "expert" from the Different Strokes website about this issue, and so hopefully will get a response.