Anyone experience a wearing off cough/shortness of breath?

[PEB69]

Hi everyone, does anyone experience a ‘wearing off’ cough or shortness of breath? Not much info out there other than it is not determined if it is the meds, PD, or wearing off. Hubby is experiencing this the last few weeks and it seems to happen during wearing off, it’s an awful cough and tight chest , not relieved by his inhaler but settles when on, he is not unwell. When the side effects of a drug could be the same as a symptom your Dr is likely to suggest increasing your meds which creates a vicious cycle of more symptoms more meds. Hubby is getting short duration response to his meds now hence is taking them every three hours which I feel is too much as he’s only been on sinemet for three years, I’d like him to reduce the dose and extend the dose timing but these meds are very addictive and he’s only lasted half a day when we tried this. He currently takes 1.5 of a 25/100 sinemet every three hours and a half pill at the two hour mark and a controlled release at night. He is off to the Dr this week and will ask to trial entacapone to see if it smooths things out and he can space the dose timing out more and reduce the dose. I have told him he will never be ‘on’ for 24 hours a day and will need to accept the off times, easy for me to say I know , but I would like him to reduce meds if possible, he’s only 53. He also experiences muscle pain - it will be in his thigh muscle for a few weeks, then disappear and move to his back or shoulder then move around again, again med responsive. Any thoughts or advice?

[Zella23]

My HWP used to cough frequently and I found that NAC ( N-acetylcysteine) has really helped with this. We live in the U.K. and can buy it as a supplement but in the USA I think you need a MDS to give it to you. It’s worth investigating it to see if it would help. I’m not a doctor so ask your MDS whether or not it may help.

healthline.com/nutrition/na...

medicalnewstoday.com/articl...

[Boscoejean in reply to Zella23]

We live in the US and we can buy it as a supplement

[PEB69 in reply to Boscoejean]

Same here, we are in NZ.

[Eryl]

A cough or shortness of breath is often a sign of systemic inflammation which is causing narrowing of the airways. Systemic inflammation is commonly caused by foods like refined seed oils and carbohydrates. Search the internet for lists of 'Foods that cause inflammation' but ignore those lists that include red meat.

[staceysack]

I have the same symptom in regards to cough and shortness of breath. I had asthma as a child and minor asthmatic type issues like trouble breathing once in a while when there is a lot of pollen in the air as an adult but no longer need an inhaler. I experience this symptom as a wearing off as well but usually only when I'm really tired and haven't slept much. I started NAC this last week and so far have not experienced this issue. In fact, I feel like I need less medication since I started taking it. It's worth a try if it brings him some relief. It really stinks when you can't breathe well.

[Bunny622023]

Hi PEB69,

My husband gets shortness of breath every time his meds wear off. Identical to how you describe. No cough though. When ON he has no problems at all. He is Young Onset, 25 years plus now and age 61. DBS 12 years ago.

His Neuro said it is a common thing to do with the wearing off. Whether from meds or the PD itself, he feels its from the meds itself. He takes 2100mg C/L per day. That is high dose but not as high as many people take his Neuro said. He takes Comtan to lengthen at each dose which is 4 times per day which is every 4.5 hrs. He has ON time of around 3 hrs out of 4.5. Pretty good really. I think reducing the doses won't help as the C/L needs to do its job. I liken it to a plane taking off. If he doesn't have the oomph to get up off the ground and the ability to stay level (the fuel) then it doesn't work. That's where Comtan can help. If you take away the uplift though by decreasing the meds, or taking away the fuel to keep him flying - then 'it all falls down'. Just how we find it for my husband.

As you know and have said - very easy for us as carers/wives to say these things, but the reality is PD is an ever progressing disease. After 25 + years my husband is doing really well. Falls and speech are his main issues.

[park_bear]

>"taking them every three hours which I feel is too much as he’s only been on sinemet for three years"

Agreed!

Having tolerance for some off time is useful - one way to keep dosage down.

There are non-prescription disease modifying treatments that I and many others have found helpful. Implement the thiamine and the cinnamon one at a time and see how one works before proceeding with the other:

• High-dose thiamine. Dosing instructions and other information at the links. Allow four months for full effect:

b1parkinsons.org/

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

facebook.com/groups/parkins...

A good source of thiamine HCl is here:

vitacost.com/vitacost-vitam...

• Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...

[PEB69]

Thanks everyone for your input. I have ordered some NAC, we did have some in his stack years ago but it dropped off our list. He does take B1, he did have a consult with Dr Constantini years ago before he passed away, he now takes 100mg three times a week. Yesterday I convinced him to not take the half pill at the two hour mark of his 3hrly regime, he managed to cope with that and actually said the feeling of having to have it passed and he could make it to the 3 hour dose time, even though still off. We will trial Entacapone this week after seeing his Dr and if there’s a notable effect he will try to extend his dose time to 4 hourly bit by bit.

[Tonymark59]

I have just had a ampomorphine infusion pump fitted and at this stage it has completely eliminated my off times. It delivers a measured amount of liquid medicine continuously and doesn't go through your intestines (not affected by food). I'm 10 years in,65yrs old and was taking 1200mg of sinemit a day + entacapone and amantadine. I was taking very short breaths before when off but after starting on the pump back to normal now

[Sandmanliz]

I think the symptoms are mechanical. when you lose muscle tone to your diaphragm it does not relax down but is the opposite. The lowering of your diaphragm when you take a deep breath is an active sport. With less muscle tone (or I have had patients with partial or hemidiaphragmatic paralysis) of the diaphragm it is arched upward. Thus you have less lung volume overall as the diaphragm is arched up into your lung space and you are using your upper rib muscles on their own to breathe. Sometimes I am even panting. Dopamine also plays a big role in your cardiac out put. Now it is hard to take a deep breath and your cardiac output I believe also decreases. (We give IV dopamine to patients in cardiac failure to increase the strength of contraction.)

Sometimes if I have to finish a call or talk I rest my hand on my belly and concentrate on "belly breathing" more until the meds kick in to be able to have more speech air volume.

This is just my gut feeling but I did have a front row seat to over 30 years of giving anesthesia and chemically paralyzing and reversing many patients for their surgery. I know this is not really a solution but understanding helps.

[PEB69 in reply to Sandmanliz]

Thanks. It makes sense considering the diaphragm is a muscle and likely reacts the same as any other muscle when dopamine in too low. He will try the belly breathing and relaxing, of course when this happens he gets anxious which makes everything worse. We find any anxiety or busy day out and about makes all of his symptoms worse, but of course you cannot shut yourself away.

[Gallowglass]

I had dry cough issues for a year. A voice therapist told me to chew gum for 20 minutes every time it happened. It worked! Cough is nearly gone. She said there was a study that indicated gum chewers had a much lower rate of death by choking. I also noticed I was more likely to get a cough when I sit in my low squishy couch! Bye bye couch.

[PEB69 in reply to Gallowglass]

Thats really interesting about the gum. He did used to chew xylitol gum for dental health and found it could relieve the tension in his neck etc. I will get him back onto it. I agree with slouching posture from sitting isn’t good either.

[Nalapuss]

Hi PEB69,

Well your HWP has identical symptoms to me which came on about 4 months ago.

I was diagnosed 3.5 years ago, however, displayed symptoms which I attribute to Parkinson’s around 15 years ago. I will be 53 in 2 weeks. I was on quite a low dose around 6 months ago (2.5/3 C/L a day) but once I started experiencing SOB and laboured breathing I upped my dosage to relieve the distressing symptoms.

I now take 5x Sinemet 25/100 and 3 Entacapone in 24 hours. The Entacapone has improved the sob issue but there are days when my meds don’t touch it.

So I’ve been trying to figure out what may be aggravating my breathing:

Limit or exclude caffeine - caffeine seemed to exacerbate my chest tightness

Find a breathing rhythm that suits you; exaggerated in-breaths/out-breaths seemed to irritate my dystonia

Try and resolve any issues you may have with your neck. Do you have a disc-bulge /do you need to stretch tight areas etc

Keep a check on your posture

Are your iron levels low?

I think tight intercostal muscles may be causing my breathing inefficiency as I can feel they are knotted when I massage them. Also feels like upper airway a problem.

Thanks for the advice already given by you all; I’ll try B1 and try and hold out for longer than 3 hours before taking my Sinemet.

It’s likely I’m am going to be referred to a respiratory clinic so I’ll let you know how I get on.

P.S. cardio issues were ruled out (had tests).

[Mocha1263]

Hi I believe Entacapone does make a difference by trying not to let you 'fall off a cliff'. For me it has not been a dramatic smoothing but the pills contribute to the overall management of PD.

[PEB69 in reply to Mocha1263]

Thanks, we will report on his entacapone trial once he’s been on it for a week or so. Let’s hope it does it’s job without side effects.