I have been diagnosed 5years and over the last couple of years my breathing pattern has changed. In particular I notice i can get very short of breath with walking. Sometimes Im ok but later in the day the same activity may make me feel like i can't get enough air in my lungs. Yes i know i should exercise more but this seems more than exercise related. I don't see this discussed much and wonder if it is very common or not in Parkinsons.
Anyone have breathing problems since diag... - Cure Parkinson's
Anyone have breathing problems since diagnosis.
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Hikoi
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Hikoi,
I've noticed that I am short of breath also. Especially when I'm going up steps. I find myself taking deep breaths throughout the day. It's a good question.
Not sure if it is common, but like you I have not noticed it being discussed as PD related. About 4 years ago I mentioned it to GP who sent me for just about every test under the sun - looking for problems in lungs and/or heart - with nothing found that was outside normal. PD diagnosed a couple of years ago and still breathless (even walking a short flat field at moderate pace) and it has been put down to another symptom of PD - by me, not a medic beyond the PD nurse. Also I have noticed that it varies and the effect of walking through treacle can be overcome with perseverance.
Hi get a blood test to check your D levels, mine were very low. That's what was causing my shortness of breath.
from Niecy
Interesting Maryalice and Merlofriend. Thankyou. I'm fascinated by the whole subject as there seems so little about it and for the most part I think doctors often do not believe it is PD related. I have found some literature that says it can be a levadopa wearing off symptom.I guess that means low levadopa levels and if so could be possible pre diagnosis Merl.... I have been paying more attention to it lately and have noticed that i am more likely to become breathless when my meds are due. I too can become breathless on walking flat ground at regular pace. Overcoming the treacle feeling interesting, no meds involved?
I've not noticed any connection with meds either wearing off or the opposite. Should have said that the overcoming was mostly possible, for sometimes it plainly isn't. Find it helps if I elect to make a walk circular, so there is an element of pacing myself, in the sense of work expanding to fill the time allotted to it. Also will complete my profile shortly to add that I have other inflamatory conditions that probably do not help, although AS is kept at bay with exercise.
I get the same problems it is variable and there doesnt seem any pattern to it.
I CANT BEATHE LYING N MY BACK ???
12 years after diagnosis I have recently started having periods of breathing difficulties. Not related to walking - I don't do any (Osteo-arthritis) - nor to status of meds. There does seem to be a link with some kinds of physical activity but not clear which. My breathing becomes rapid and I can almost describe it as a panic attack, without the panic. I am seeing my consultant this week and intend to ask about it.
Thank you, I will look for your post.
Well, I went to see my consultant and she wasn't there. Saw my PD Nurse instead & made another appointment for the consultant in mid Feb. I have had a chest x-ray which shows my lungs are clear so that is another worry dealt with but I wanted to clarify that with the doc.
PD Nurse was helpful, described the effect of PD on the muscles in the abdomen and chest which causes me to feel that I am not getting enough oxygen when, in fact, I am. Seems to be a natural progression of PD - no reason why any particular muscle should be immune, I suppose.
Jupiter
Thankyou for the update. I have read a bit about sensory dyspnea, the sensation that we are short of breathe although tests would show we are getting enough oxygen. Maybe it is what your nurse was describing.
Also from talking to others some meds seem to increase the likelihood of panic attack type symptoms.
Did the nurse mention the diaphragm? I wonder if that sometimes goes on strike waiting for the next dose of levadopa. All theories.
Not strictly breathing difficulties, but choking sensations, yes. Swallowing is done by the muscles of the throat, and those muscles are also subject to PD's general muscle-deteriorating effect. I recently had an episode of being unable to breath, due to choking. The throat muscles came back after about a minute and I was able to breath again, but it was a scary moment (diagonsed ca. 2011, after 10 years of symptoms).
Yes, I feel shortness of breath at times. I ride a stationary bike often....at least 45 min./day. When I get involuntary movement , I ride the stationary bike for 15 min. And the involuntary movements subside. But, I am getting off the subject. For all the peddling I do, I am always surprised that I get shortness of breath.
Interesting - that riding a stationary bike and that your involuntary movements subside. I also get very short of breath after about 30 mins of fairly ordinary movement, and a tight painful band in my chest that seems to squeeze any breath out of me, and I could then go into a panic attack. I actually can not work through the loss of air and pain - and I do need to lay down supported by pillows until pain goes and easy breathing comes back. But i have had asthma in the past, so my chest is a weak point. However by resting quickly when it comes on - I get over it more quickly. I am going to get a stationary bike but I would prefer a treadmill - but space could be an issue.
Yes, I have had breathing problems that came along with initial symptoms of PD, were relieved by treatment which started 10 years ago, and have over the last 3 years re-emerged. The feelings of breathlessness are variable, that is one day I might be fine, another I could be gasping. They seem to be related to where I am in the medication cycle. A few minutes and they subside, but the only thing that really helps is to have more medication and wait. Not exactly convenient if you are out and about and nowhere near close to when your next dose should be. It has been a major source of reluctance to leave my house as it is quite debilitating and once it gets going even a short distance brings it on again.
Great to know how it is for others and that the symptoms are not all that unusual.
Mine is unrelated to exercise and appears related to lack of sleep although the doctor's put it under "panic attacks". I can walk (with meds) around three miles at a brisk rate without any breathing issues but tend to encounter the breathing problem at night or during the day when not doing really anything.
Oh yeah, breathing difficulties are quite "normal" in PD. Just google it, you'll find lots of info. For me, it comes more from being under stress than from doing strenuous stuff, or being behind on my meds but becomes debilitating if these 3 causes are happening at one time...rather like a perfect storm...
Best wishes
Steve
Bisbee, AZ
Yes! I've been taking Sinemet 25/100 4 times a day. In March I was running 3 miles; and 2 days later I couldn't run a 1/4 of a mile without getting out of breath. I checked the Internet; and all of the meds that I'm taking cause shortness of breath.
Definitely noticed breathing difficulties about ten minutes in to a walk on the flat which gets worse with slight inclines. Have always tried to remain active and exercise regularly, but noticed this only since January of this year with introduction of Sinemet Plus (3x daily ,25mg/100mg to Requip XL 10mg. Have recently dropped to 8mg Requip for other reasons (ankle swelling and weight gain) but breathlessness remains. Notice it with any increase in physical activity eg dancing or climbing stairs/steps..It does tend to stress me but am glad to hear its not just me.
I notice: mostly the shallow breathing. Shortness of breath tends to come because I'm not breathing deep enough or often enough
Thankyou for all the replies so far, such variety of experience. We can read about swallowing problems and later development of problems like pneumonia. We can get told it is panic attacks and that could explain some situations. But I see stories here that don't fit any of those categories.
Yes I have developed shallow breathing too. It can be frightening.
Yes it is frightening and I feel as if my chest gets tight and my heart is beating so fast at times. Also noticed development of slight cough but it hasn't got better or worse..it's just there. The comment about links to pneumonia has crossed my mind too. No one has ever mentioned it to me in connection with PD...only found out through this site. Have never had chest/breathing probs prior to starting sinemet and have never smoked.
Interesting! I have been diagnosed with PD about 7 years ago and I have been on Sinemet Plus 25/100, four times a day at 4-hourly intervals, for two years. I have noticed a shortage of breath for the past year or so, but nothing serious. It usually happens late afternoon and doesn't seem to be related to any activity. However, I have been asthmatic all my life and I always have a Ventolin inhaler about me. One puff and it's sorted.
Now, I'll try to reassess my situation in light of your experience and report back. God bless
I got an inhaler at my request from GP but I have never been diagnosed with asthma. I use it if I get SOB and it works. However I don't think I have asthma. I think it might be to do with tight intercostal muscles (between the ribs) and maybe diaphragm not working well when i am low on dopamine. Will be interested in what you notice
Hello Hikoi,
It's a month now since discussing breathing porblems. My observations are not going to help much, I'm afraid. In my case, I doubt that the problem is related to the Sinemet Plus, but that's not to say it's not PD related; the SOB hasn't changed, but it is'nt a significant problem for me. I guess my attitude towards it, as a long-term asthmatic is different to yours with no history of asthma. Understandably, you find the experience more disturbing. It must still be the case that your diagnosis of the cause could be correct, - and for me too! God bless
Appreciate your update Bob,
My symptoms are improved since i added entacopone.
This is a recent report.
Reading through the posts - it does seem a bit of a no hoper. If you take PD medication then it can have breathlessness listed as a possible side effect - then some posts say- that they get breathless when meds are due. So could it be that PD meds can cause breathlessness & short term cure it? I get excruciating chest pains like a vice tightening so I cann't breath even from the mildest exertion & I cann't work through the pain. The only thing that helps for me - is to go to bed and being supported by lots of pillows behind my head.
While reading these posts on this subject - it seems to me that PD meds are friends and foe - so what to make of it? Is there a solution?
My husband went through a stage of peculiar breathing patterns . It's almost as if he cannot breath tHrough his nose or lost the habit to do so .
I think it is one of the symptoms but of course there are also so many side effects of the meds.
Thanks cc, does he still have this problem?
Yes he does unfortunately . We get very disturbed sleep. He also gets a build up of saliva in his throat and has great difficulty clearing it . I have tried everything . Black grape juice , Catarrh cough medicine , gargling before he goes to bed . I keep the head of the bed raised .
How fortunate he is to have your care.
I went into the chemist today and asked the pharmacist his opinion about anything that might help his throat at night . He suGgested ROBITISSIN cough medicine
Hello, I’m a RN. There is a medication called Scopolamine 1.5mg. I use it on my patients with the same issue. It Will dry up most of it but maybe not all of it. You also could try to lay him on his side when he sleeps. If he sleeps on his back with his mouth open and saliva is going to run to the back of his throat. Changing his position might help.
Scopolamine comes in a patch which could be good for some people. It is an anticholonergic type med which can give a dry mouth and cognitive problems and and I have read a report of it inducing hallucinations. I would use with caution
Several years ago I noticed dyspnea (shortness of breath or SOB) and, knowing that it was listed as a possible side effect of several PD meds I was on, I asked my neurologist about it. He dismissed it as not being PD related and recommended I see a cardiologist for evaluation. The cardio denied it was in his territory and recommended I see a pulmonologist. The pulmonologist denied it was a pulmonary problem and I had three MDs pointing fingers at each other with nobody wanting to take responsibility for the problem. Time passed and for this and other problems, I fired the three of them. I got a new neuro who referred me to a new pulmonologist, who referred me to a new cardio, who finally gave me an answer; my dyspnea was due 20% to cardio, 10% to pulmonary, and 70% PD and PD medication related! Guess I'll live with it as is.
.
Espo
Your response is partly why I asked the question. I think dyspnea/SOB in particular is an under recognized symptom that we are often told is unrelated to PD or if it is acknowledged we get very little information about it.
I think it's a mix of all , my husband has been through all that . He also had Atrial fibrillation .
Good question, many good answers..... As was pointed out, "the lungs use muscles to function, PD affects muscles". Also, I must admit, as another responder does, to breathing too shallowly during the course of an average day so that the lungs, when called upon to deliver more oxygen, respond with "shortness of breath". Anybody have a simple lung expansion exercise?
A number of people have said about breathing too shallow. I have read that before too (yoga breathing is recommended) but then i wonder why we are not breathing deeply enough, is it just that in general people don't or is it a problem more common in PD ?
As part of the efforts to diagnose my breathlessness I was sent to a breathing specialist who advised that most people do not exhale deeply enough. That certainly is not my problem - more often I notice too shallow an intake. I too was tried on inhalers to eliminate asthma, then GTN spray on the tongue, and like 'Espo' (above) went twice around the consultants. I even offered my own answers ... am I too heavy and one of you just needs to suggest I lose some weight, and perhaps this is an ageing thing. Nobody took up either of those batons, and since PD being diagnosed it seems to have run aground as an enquiry. I try to breathe more deeply when experiencing SoB, but it makes no difference. Stopping all activity helps. Anyone else experience rather extreme sweating, especially on back and head, usually accompanied by the SoB?
I would like to join the rest of PWP and add my name to the list of people with breathing problems. I was Diagnosed about 6 years ago with PD and within the last few weeks I am starting to have shortness of breath and been taking COPD medication.
Be care they caused mful with the COPD INHALERS
COPD ihalers gave me Glaucoma and Wet Macular Degeneration;;;check your vision often.
i really notice shortness of breath while trying to speak. It's worse now since my programmer adjusted the frequency on my DBS
OMG.that is what I experience. I sometimes cannot finish a sentence when speaking. I am currently not on any PD meds as I had bad side effects from Miraplex. My lungs,heart, oxygen level all checked .
My husband swam most everyday usually at lunchtime from work , his breathing was absolutely no problem . He started to get strange reaching patterns and while lying in ed with him at night one time I sneakily held his wrist and checked his pulse . It was very faster and all over the place . I didn't say anything to him but when we next went see the GP I suggested he took his pulse . He went in straight away for an ECG . turned out he had Atrial fibrillation
Now on beta blocker and Warfarin . He is now very short of at regular breath
I was told that this is a side effect of carbidopa. sorry for spelling I have a hard time using computer, and my small brain.
Regards
ERIC
Hi - I find I breathe very shallowly and seem to gasp for breath. I can breathe deeply if I lie flat on my back with my arms stretched above my head which presumably opens my chest. It does not inhibit me from exercise
I attended a visit to SITran which is a Neurological Centre of Excellence in Sheffield UK researching all forms of Neurological disease including Parkinson's. I learned of a clinical trial for MND sufferers where they put a electrical device powered by a pacemaker into the chest to help their breathing. Although sufferers of MND have it much worse than we do, I'm going to keep abreast (excuse the pun) of this development
Sorry you are having this problem too. I face this and the back pain each morning!
No fun! But we can still seek answers. ~~Dennis
Thankyou so much for these replies, there is alot of information here and i think there are a variety of breathing problems described. Hearing others experiences is very valuable and reassuring.
I would be grateful for any links to information, I have been looking and there are a few mostly older studies. i found very little on it as a med side effect, or information from Parkinson organisations for PwP
I hope this link works but it looks like some research is being looked into so breathing difficulties are well documented as part of PD. The autonomic nervous system is effected by PD so this can cause difficulties either breathing, excessive or reduced sweating etc.
parkinsons.org.uk/sites/def...
Thanks for this link Silverkins. What I dont understand is if breathing difficulties are well documented as part of PD why there is no patient information on it. I have searched the internet and have trouble finding anything. Nothing on the the PUK site. I think this is strange because as this thread shows it affects many people. Information from medics is variable and conflicting so it seems for most of us we are left to work out what is happening ourselves.
hello there.. I have recently had several trips by ambulance and car to the emergancy department, with terrible episodes of shortness of breath...I have been diagnosed for 13 yrs. and in the past 6 months its getting worse..
its very scarey, and I feel im not getting enough air. I was admitted to nuero ward and every imaginable test was performed.. resp lab all results came back ok.. I don't understand it..
I don't feel like im panicking .. or superimposed anxiety as my nuerologist said I had WHY as he was going to do a referral to mental health..
WHY DO THEY THINK YOU HAVE SOME FORM OF PSYCHIATRIC DISRORDER WHEN THEY DONT HAVE THE ANSWER. IT MUST BE REALLY REASURING FOR THEM... ????
anyway after a week in hospital .. having been thru every test ever .. there where still no answers to why this was happening... its still happening.. I don't like it... ive called the emergency nurses out twice.. second time they said they wouldn't come because theres nothing they can do???. That was really reassuring I tell you .. she did come after a bit of talking.. it was the fact she said nothing she could do . she at least sit with me and help me get thru this horrid time .surely that is doing something. ... I could go on forever with this but id just get angry.. its simple I thought
.. I have parkinsons disease along with 99 other parkinsons related side effects from the drugs they feed you .. and they say nothing they can do.. will I die from respitory failure.. ??? not old age
I am sorry to hear about your doctors response. I had an MD say the same thing to me. God bless the doctors who stay with us when there is no cure and things are getting worse..
My husband gets short of breath from anxiety and has sleep apnea with his Parkinson's disease.
Hello Hikoi,
I've seen heart failure mentioned as a side effect for some PD drug or other can't remember which off hand. Also if somebody has some peripheral oedema wth the shortness of breath then that is a possibility.I suppose.
Yes, I am short of breath sometimes, but can't identify any particular time. It could be anxiety in my case.
Have parkinsons 12years now,So many sides to this disease.In the begining my chest would tighten and Had problem breathing,For the longest time havent felt the tighten with the feeling of shortness of breath.in the last month or so,I réel like I a am fighting for breath and Blood pressure Has been shooting up and then back to normal.Seen my Cardio doctor and he told me its Parkinsons,The autonic syste controlling the BP.2 years ago just walking I went into afrib.My pulse rate was up to185,Every test was done,The doctors said they were saying it was the Sinement was doing it.never happen again.Now the breathing is coming into plat again. Who knows with parkinsons and sideeffect of meds.
I don't take any PD medications at the moment - but I am suffering with this painful breathlessness - nerve?pain & loss of use of my hand & inflamation as well in my poor suffering hand - pain from tension caused by pain - & practically non stop shaking. I have tried lots of PD medication but A/ they don't help reduce any of my symptons & B/ I have had bad side effects from PD meds - so I am in a quandry!!! I was thinking when I next see a neurologist to see what he suggests I could try - but after reading these posts - a lot of people don't seem any better off using PD meds!!!
Phoenix
I take meds and couldnt have the quality of life I do without them. I guess people who are having problems who are likely to post more than those who are not.
I think these forums show just how incedibly complex PD is and how difficult it is to treat. Best wishes
Glad I have seen this.I have had multi skeletal pain for 3 years which was diagnosed as fibromyalgia.I'm a teacher and when talking sometimes I find I struggle to get my breath.After recently developing a tremor in my arm,I have now been told I have mild Parkinson's
Hi ive just joined and reading your post sounds a bit like what i have been having. I have had PD for 11 years but only just started with breathing problems my PD nurse has never come across this problem been related to Parkinsons, so what do you do.
yours niecy64
You are not alone - I have had Parkinson's for over 10 years, and my shortness of breath has become debilitating. The neurologist knows that about 5% of Parkinson's patients experience this but doesn't seem to know what to do about it. I have recently underwent dbs surgery, but it has not helped - if anything, it has become worse. I am desperate for answers
I searched for this subject just now, and was so happy to find a discussion on it in this forum. I am nearly five years into diagnosis, and over the past two or three months have found myself short of breath and grunting with effort in doing simple things around the house, like vacuuming the rugs. I also grunt at my boxing class, and during my exercise class. It seems to be a symptom that occurs as the PD progresses, judging from the responses here. This is such a fun disease! Every symptom known to man seems to be possible. Thanks for sharing and helping me to understand this symptom better.
I thnk part of he problem is how deeply you breathe. I have the same experience of rapid breathing but not breathlessness. If I take some really deep breaths (say, 3-4/minute), including a sigh or a yawn, my blood oxgen saturation rises frm about 91 to 96-98%, my pulse drops and my breathing rate falls.
Four things may affect your depth of breathing:
1. your lung capacity (mine is 50% above average);
2. restriction of movement; sitting upright in a whel chair can give you too little space to breathe deeply;
3. You have too few dopamine molecules to activate the muscles that allow deep breathing (unlikely).
4. raised blood carbon doxide levels can make you breathe in rapid shallow breaths.
If it happens at night then get yourself a sleep test. If they decide your have sleep apnea, in the UK they'll supply you with a CPAP (Continuous Positive Air Pressure) machine, which will revolutionise your sleep.
Let me know how you get on.
Hi get your vitamin D levels checked that is what caused my breathing problems, I take 1 d vitamin tablet a day and touch wood im fine,
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