My PDN is telling me that my breathing problems has nothing to do with PD.
Which may be so, But if its not the PD it must be the meds.
PDN says see GP. Which I did ,GP says that oxygen 98% and any thing over
90% in the blood is fine and can't find any thing wrong.
I read that L-dopa can effect your breathing ?
When I phone the PDN and say your wrong .I would like to know what I am
talking about. Any feed back at all will be appreciated .
yours EXPORT .
Well, I also have the same problem. Went to an allergist and have developed asthma at the age of 57!! He put me on Advair inhaler, I use a nebulizer if needed, and take Singulair at bedtime if needed. It works and never had a problem until I developed PD 2 yrs ago. My physician said the same as yours.....but I was fine before the PD and all the new drugs I have to take!!
I also have asthma. What I have found though is that when I am in a lot of pain, I tend hold my breath. I have to be very mindful of breathing.
I am always short of breath and that is since the l- dopa was given
I, too feel short of breath at times. I believe my breathlessness is due to anxiety.
Anxiety or Panic attacks can cause breathing trouble.
Same problem, I have been ckecked out for heart, lungs etc. They say nothing is wrong, but they wrote out prescription for Pulmicort and Oxis ie astma.I was diagnosed 2003, can't remember when the breathing problem come up. Now they say I need "condition breathing träning" I go to gym, water aerobics and do Nordic walking. I only feel it when I walk???????
I doubt you will ever find out if it is the drugs causing the problem.
However, check on the net your medications, there is lots of info out there to study. Ldopa can also cause problems with Blood sugar results and any blood test results apparently.
I was diagnosed with diabetes recently I still think it is the Ldopa that caused it or even false results in tests.
Unfortunately, I asked the drug company and two doctors how much Ldopa can affect blood test results none of them gave me a satisfactory answer.
The question is do they know or do they hold back on giving you an honest opinion. I think the answer is yes they do.
same here,i,v also developed angina symptoms lately.
I have no doubts whatsoever that the breathing problems I have are part of the whole pd/l-dopa mixture of benefits and problems. I have signififcant spech problems which in part, I am sure is caused by not breathing properly. The diaphragam is a muscle, which like any other muscle in the body can be affected by pd and by l-dopa. I know it, because I can FEEL it. I know what diaphragmatic breathing feels like. I know what it feels like to be beathing mainly from the upper part of the chest. I know what it feels like to run out of breath when I try to talk and my diaphragm won't move to create a full breath. What's not easy to say is what is specifically caused by pd and what might be side-effects of long term levadopa usage combined with pd. But trust your knowledge of your own body.
i agree hanuman. I have had shortness of breathe, inability to expand my lungs lately and i think it is an "off symptom" for me. Like you I have thought about the diaphragm being involved.
This article seems to confirm the "off" connection.
ingentaconnect.com/content/...
I have speech and breathing problems pretty much all the time except when I sing, which is quite bizarre!
I think there's so much the medic's don't know. Everyone's journey with pd seems to be such an individual one..btw I like your explanation of choice of profile name...hanuman represents amonst other things, strength and courage, which we all need in bucketloads!
Oh how ironic! I am awake at this moment (4 a.m.) with another difficulty breathing "episode".
i have been on PD meds for ten yrs. and recently began having episodes of shortness of breath which lasts approx. 20 min. I was rushed to the local ER about 3 weeks ago ........my blood pressure shot up and I was very sick. The hospital ran some tests and found nothing wrong. I followed up with my GP and she sent me to a cardiologist. He ordered every test imaginable and I will rec. the results this week. I do not feel it's anxiety or stress because these spells tend to happen when I am sitting or very relaxed and I am on a med. for anxiety. Oh...failed to mention that I saw my Neuro. and he too wanted me to see the Cardio. I am now taking med. for high BP. I DO NOT want anymore drugs. I truly think it's one or more of the PDdrugs! I will go back to my main Neuro. on Thurs. I want to find out what is wrong!!!!
Here's my experience as a longtime asthmatic; my allergist had no answer for my observation that as my PD symptoms were worse, so was my asthma. I hypothesized that since the lungs have smooth muscle controlling their function that this could be adversey afffected as any muscle we have. Doctor agreed that this was likely but as he had no other PD patients, he didn;t know. I found that deep yoga beathing and biofeedback helped.
I actually have a question about breathing problems elsewhere on the 'Community.' I'm having problems breathing, as well, to the point that I stop breathing several times at night. My oxygen has dropped as low as 80%, but didn't stay there long enough to require treatment, yet.. My usual night-time O2 low is around 90%. I did have a sleep study done & I don't snore or have significant apnea, but I do have something called Parkinson's Related Laryngeal Dysfunction, which is similar to what happens to ALS patients. My breathing problems have begun to carry over into my waking moments now, too. BTW, I am not on Levadopa, but I do take Mirapex 1.5mg 3x daily and have Early-Onset PD.
Angel
My vote is yes PD related. I have visceral off. So when meds wear off nothing works in gut. Why not keep moving and fighting.?
I have some problems lately, it is very hot here, heat indexes into the 105 to 110 degree range. The problem usualyy strickes about 4 hours after I take my requip, I think I really am breathing ok, pulse and bp are ok but it is kind of a panic attack. Just wondering irf it could be a combination of the requip wearing of and the heat. See my neuro in about a week. Will have to ask.
It was a littlle over three years ago i started gettinf dyskinesia and wearing as well. The wearing off was in the evenings anywhere from 5 or 6 on. The first few times it happened it scaed me terribly. There is a fire dept, nly a block from where I live and I went up there and had them check me out. They said I was just having an Anxiety attack. They said my BP was a little elevated and my pulse was up just a little but other that I was fine. Went tp MDS the next day and he just get used to it, however I wound a focaas was very scared at first. I just focal point, tryed to stay calm and made myself take long, slow, breaths. Once I got used to it, I no longer panic. I diagnoised in 2001 and have had DBS this year
THANK-YOU .
All of you who have answered seem to have been fob off with some other reason . I know its the drugs . Can't think at the moment .
yours EXPORT.
I also have breathing problems that have been said to be asthma, but also know when my arms freeze and I don't move them I have trouble breathing , when I have my husband extendor pull my left arm out I can breath better, so I do believe the causes the problem also. Then waiting on meds to work makes a person get upset which then the breathing thing can turn into a nerve problem.
My husband is the same . I understand that Parkinsons affects so many parts of the body including the muscles , also the body collapses and the organs are squeezed . I am always asking my husband to trsy and stop mouth breathing gasping it's almost like hyperventive . If I remind him he will start slowing his breathing gently and he feels better .
Our trouble is he has been diagnosed with heart failure and waiting for a heart scan which I can't see happening very soon because of the current climate .
He was a long time daily swimmer and until now never had trouble with any breathing
He is on Sinemet ..
I had shortness of breath after finding out about PD and started on Sinemet along with Mirapex. They tried to increase dosing on Mirapex but the shortness of breath increased. I also have anxiety and panic attacks which on posting above causes me to feel short of breath.
My first posting on the PD part of this website, as my husband's PD after many years has now manifested itself in to PSP (he's 49 by the way). Anyway my husband last year had breathing difficulties, he was very fatigued all the time, didn't feel like he was able to breathe properly and we were always told "it's the Parkinsons...." Not a good enough excuse I felt (I am sure everyone with PD has been fobbed off like this - even a dentist once told him that the toothache was because he had Parkinson's disease!).... eventually he had a scan with special dye, which picked up clots in his lung, which of course was affecting his lung capacity and breathing. So to cut a very long story short, keep on pushing the medical people for tests and proper answers, don't let them blame everything you may have to be because you have Parkinson's (as we have found over the past 7 years). I believe the one simple test to detect if any "clots" are lurking in the body is a blood test, failing that push/insist for a scan. I really do wish you well.
To all those with PD and also their Carers - take care.
I have Pd for 11 years,Dx at age 45.Have breathing when walking,Its alot harder and it takes more energy to move my body with PD.I told my lung doctor who treats me for mild case of copd from working in Railroad tunnels about this and it so happens he has parkinsons.When I first met him I didn't it,I know him and been going to him for 25 years,but now he move very badly from the meds.I had a tremor start in right hand in work and he is really my internist also,So I went to him to find out what was going on,He knew right away it was pd.The muscle tighten uo in the chest just like any muscle.My first indication when Im going off is my eyes,It hit's the weakess muscle first,In the past 6 month a cardio doctor had me on A-fib meds,First time I had a-fib.They were just finishing a caterization and my meds were wearing off and I went into A-FIB On the caterization table and they did a cardioverison on me,Next time I was walking my dog only a block and all of a sudden my pulse went up to 187 and was walking slowing this just popped in a-fib again,Now the cardio doctor stopped the A-FIB meds after seeing the heart monitor I wore for two weeks showed no A-Fib again,They belief, the caterization and my cardio agree,They are pretty sure Sinement was throwing me into A-Fib.It may not happen again, they said,Sinement can do some weird things,I take it every two hour all day 25/100 cr and regular 25/100 and 50/200 at bed and mirplex.I don't mean to rag on any movement disorder doctor,But they are learning from us, movement disorder doctor says all the time and to the best cocktail that works for me and I do and been going for 11 years,But I have a good responce to sinement ,but down to every two hour from 5 when i was dx,I wish they didn't start me on sinement right away.But agonist didn't anything for me.Im lucky in away I have a doctor who has it and have a doctor who gets it.
casevjones. Pleases could you tell me what you mean when you put FIB ?
Thank-you for your answer
yours EXPORT.
Hi Export,I was going into A-fibulation,irregular heart beat.I don't any heart problems.But the cardio doctor feel and I feel,Sinement is causing me into a irregular heart beat,They had put me a drugs for A- fibulation and a heart monitor for two weeks and no irregular heart beat,Sinement does has it's positive points,but also negative affects,Also the cardio doctor sent me to a doctor who works with signals of the electriclal part of the heart,The doctors wanted to cut a nerve going to my heart that would stop these false signals going from the brain to heart,Parkinsons sents alot of false signals from the bain to the body.I had mentioned that my lung doctor who is 57 years old is the only one of my doctors who totally knows what parkinson control our bodies,He's a doctor and great one and has a kind and caring person and has parkinsons.Let me try to explain how he explained it to me,Without a diagram to show you,In the chest people without Parkinsons their muscle work in sync together,People with parkinson the muscle Do not work in sync,Lets see how else I can put it without being their to show you,Let say the muscle go straight down together without parkinsons,With parkinson they go one muscle here and another muscle somewhere else in the chest not in snyc,I know it hard to explain without showing you.let say two ladders put together side by side,one foot is on one step and on the other ladder the foot is on two steps above,Not stepping on same step,with parkinson the muscle not working together,Like people without parkinsons,This man know what he is saying,Again a doctor with parkinsons,Who would know better,We know that people or doctors without parkinson has know idea what is really going on,Im not trashing doctor,But they will admit parkinson is still a mystery,Yes they do have somewhat of a idea about it.But they cannot dismiss that it cannot be parkinson causing it.Im sorry for rambling on,but I think we are helping each other on this site and we live with it.
Yes you could have breathing problems because of parkinsons,Not just me dxing you or anyone else with breathing problems with parkinsons,A lung doctor with parkison confirms this.I had a law suit with my now a retired company I work for,I work in railroad tunnels and delevoped copd,The lawyers on the company side,Said I had breathing problems because I had parkinsons and received alot less money,On the argument that parkinsons is causing my breathing problem,They must have research it,To use it as bargaining tool.
thank you for asking this question export, ive recently started feeling like i cant breath and cough alot. it started after my first panic attack . it feels like i cannot take a deep enough breath and i have to actually think about and concentrate on taking breath. my mirapixen has been increased, i still cant sleep and having the feeling that something horrible is going to happen, again at the moment im able to talk myself round. i must admit until being dx with pd i thought it was just people who shaked.
mitchdee welcome to planet Parkinson's .
I don't have all the answer . This site is second to non for answer's
I have had PD 18 years so I see a lot over the years until I found this site had no one to talk
to about PD. I have lots of question I would like to ask. but I don't wish to draw attention
to my self. I think I will go and ask it now.
yours EXPORT.
caseyjones
THANK-YOU for getting back to me ,.Now know what FB means fibrillation (of a muscle especially in the heart making a quivering movement .you learn some thing new each day .
yours EXPORT.
My asthma is always bad when I have Parkinson freezing spells with my arms, I believe this does mess with my breathing because the freezing makes my muscles tight on my arms and my chest area. Doctors can belive what they want but when they ar ein my shoes they won't know how scary it is to feel like you can't breathe.
I was Dx with PD six years ago and have had shortness of breath for more than three years. Tests by cardiologist, pulmonologist, neurologist, has them all denying cause is in their purview and pointing fingers at each other – with me in the middle. More evidence of why it is called “practicing” medicine!
Espo
Very well put .
If I have any thing wrong, my GP will blame the PD and if I see my neuro She will say see your GP. Half the time they don't know . and its easy to pass the buck .
yours EXPORT.
When I was on the wrong combination of drugs, for me, I had a lot of blood pressure issues, up and down. I went to a cardiologist, he took me off all meds and we started over. Haven't had blood pressure issues since. 
mechanism of breathing is kinda complicated. but to make it simple the intercostal muscles between you ribs mas more to do with breathing than o2 sat , and clear lungs. they flex and expand and contract yur rib cage, expand creates neg pressure breathe in, contract pos pressure breathe out. prob has more to do with that than anything.
Has anyone with PD changed medication, when the initial one was not working? 
Anyone experience a wearing off cough/shortness of breath?
Out of breath 
I’m a B1er (one that has found success in B1), A few questions to others.
Has any tried Ambroxol?
