Can anyone recognize and help me identify the condition I will be describing below?

[Nikosmom]

I have been diagnosed with PD since 2013. I started medication in 2021. For the most part I do ok. Last August I got covid for the first time. I was up to date with the vaccines. I was sick for a week but it was not a very asevere case. Soon after I noticed my voice was croaky and nasal. I had a dry cough and felt some congestion.

I figured it would go away soon. It hasn’t. Instead I developed thick mucus that seemed to be lodged in my throat and I felt the need to constantly clear my throat. Very annoying. My primary doctor said it was allergies and we followed that diagnosis with the usual over the counter meds, environment adjustment,etc.

in February of 2023 I visited my daughter while they were remodeling an older house with visible mold. I know my body doesn’t deal well with mold so i was apprehensive.

While I know I have allergies my condition was not improving but instead a much worse symptom appeared.

When I was in the process of clearing my throat my body would get into an involuntary rhythm that seemed like an asthmatic attack were I kept inhaling and attempting to clear my throat at the same time.

These attacks seem to get worse with stress and can go on for 8 hours or more on an off. The seem to start and stop with no discernible reason. If they happen at night they can keep me awake for most of the night.

I did see an ear, nose and throat doctor who did not find anything amiss. My lungs were clear. She recommended some allergy tests that didn’t show anything helpful. No mold was present in my blood. I also been taking NAC for several months. It was recommended as a mucus thinner. That has not happened.

Any ideas? I have tried to describe my problem to the experts and they have either dismissed it as not too serious or insisted they are allergies.

Could this condition be caused by covid or PD? Any help is greatly appreciated

[MBAnderson]

May be Long Covid

aarp.org/health/conditions-...

info.apheresiscenter.eu/lon...

[Nikosmom in reply to MBAnderson]

Thanks. I included my covid experience because that is one possibility I am considering.

[pdpatient]

I suggest that you do see an MDS. it does seem neurologically related.

[Rufous2 in reply to pdpatient]

Consulting an MDS seems like a good suggestion. Maybe you could video an episode to show them.

Since stress exacerbates, I wonder if hyperventilation could be involved. Have you tried breathing into a paper bag?

[Nikosmom in reply to Rufous2]

Thanks. i will try the paper bag

[Nikosmom in reply to pdpatient]

Thanks

[garygjs]

You may want to take a look at The Chronic Cough Enigma by Jamie Koufman.

Unexplained breathing difficulties, some of your other symptoms, might possibly be the result of reflux/ LPR. Given slowing digestive motility, those with PD are likely prone to reflux issues.

[Nikosmom in reply to garygjs]

Thanks. the ear nose throat ruled out reflux as a possible cause but I’ll look into the book and keep an open mind.

[JayPwP]

This seems to be a issue with your throat, near or around the epiglottis and thick mucus which you are unable to clear.

I am not a doctor.

Have you tried inhaling eucalyptus oil or Vicks with steam? Or Ambroxol?

[Nikosmom in reply to JayPwP]

thanks I’ll try those

[JayPwP in reply to Nikosmom]

Don't try Ambroxol with steam... 😜

[redhawk1 in reply to JayPwP]

Definitely would give Ambroxol a try! Helps me with phlegm in throat!

[Nikosmom in reply to redhawk1]

Is ambroxol over the counter or prescription? I searched for it in Amazon and only found the children ‘s syrup

[chartist]

You said last August you got Covid-19, was that 2023 or 2024?

You didn't say how much NAC you are taking, but the fact that it didn't thin your mucus suggests it may have been too low of a dose. If you were taking a high dose, you might try Mucinex instead or in addition to the NAC.

You mentioned a dry cough, congestion and thickened mucus and these are all long covid symptoms which occurred after you had Covid-19.

The following may interest you and you can discuss it with your doctor :

healthunlocked.com/cure-par...

Good luck and keep us posted on how you do!

Art

[Nikosmom in reply to chartist]

Thank you

for taking the time to write such a thoughtful advice to deal with my situation I had covid only once in August 2023

I don’t seem to have much of a cough or congestion anymore only the mucus I also don’t have excessive tiredness, brain fog, memory issues and other symptoms associated with long covid

I don’t think I took sufficient NAC I took about 1200 mg daily since May 2024 I was pretty consistent for the first two months Not so much recently What dosage do you recommend?

What is your opinion of Ambroxol?

Sorry about the long text but I value your opinion. I will also add Mucinex to an increased dosage of NAC

The thick mucus is very annoying and at times it causes me severe panic when I don’t seem to know how to clear the mucus or stop my body’s compulsive nonstop rapid inhaling while trying to scrape my throat and dislodge the non movable mucus

After hours of whole body effort I am exhausted It is worse if it happens at night and keeps me from sleeping

[chartist in reply to Nikosmom]

I think it would be worth trying the Mucinex in conjunction with your 1200mg of NAC. My max dose for NAC is 1800 mg/day in three divided doses with a meal. Above that it upsets my stomach. I have no experience with Ambroxol.

Art

[chartist in reply to Nikosmom]

You said :

' I don’t seem to have much of a cough or congestion anymore only the mucus I also don’t have excessive tiredness, brain fog, memory issues and other symptoms associated with long covid '

This makes for a different situation than what you originally said. Thickened mucus alone can be a symptom of PD as discussed here :

medicalnewstoday.com/articl...

Here is a relevant quote from the article :

' As the Parkinson’s Foundation notes, PD can cause difficulty swallowing. Medical professionals sometimes refer to this as dysphagia. The condition can cause saliva and phlegm to accumulate in the back of the throat.

According to a 2019 reviewTrusted Source, PD can cause a particular type of dysphagia called oropharyngeal dysphagia (OPD), which stems from an issue with the mouth and throat. The likelihood of a person with PD developing OPD may be due to the following:

dysfunction of the dopaminergic network in the brain, which affects the muscles involved in swallowing

reduced concentrations of a neurochemical called “substance P” in the sputum, which links to the cough and swallow reflexes

The review notes that episodes of OPD increase rapidly as PD progresses '

I would still try adding the Mucinex to see if it can help.

Art

[LAJ12345]

You could try this Deep lung support by harker herbals. It gets good reviews.

harkerherbals.com/products/...

[Nikosmom in reply to LAJ12345]

Thanks. I’ll look into it

[LAJ12345 in reply to Nikosmom]

Or parsley

medicinenet.com/21_impressi...

“Supports gland health:

Parsley is beneficial to gland health. According to research, it has a remarkable capacity to shrink swollen and enlarged glands.

It can remove toxins and excess mucus.

Adrenal glands can be soothed by the plant. The parsley root includes calcium, iron, and B-complex vitamins, all of which support the parathyroid glands.”

Google parsley mucus:

”Parsley tea contains beta-carotene, which helps reduce the risk of asthma and clears debris or residue in the lungs. Other compounds in parsley help loosen mucus (phlegm) that accumulates in the internal lining of the lungs and throat, helping prevent congestion.”

[Nikosmom in reply to LAJ12345]

Thanks for the tip. I’ll look into it.

[Rufous2]

"The thick mucus is very annoying and at times it causes me severe panic when I don’t seem to know how to clear the mucus or stop my body’s compulsive nonstop rapid inhaling while trying to scrape my throat and dislodge the non movable mucus"

That sounds miserable and really scary. I think when you're having a prolonged episode you should visit the ER. Not only could they see the symptoms first-hand, they could draw blood to check blood gases, electrolytes, etc. And if it all proves to be a consequence of super thick mucous, maybe they'd be willing to prescribe nebulized (inhaled) NAC.

[Nikosmom in reply to Rufous2]

Thanks for your concern

[HekateMoon]

Ive read dystonia may affect your breathing. Better consult a movement disorder specialist.

[Nikosmom in reply to HekateMoon]

Thanks for your concern

[Nikosmom in reply to HekateMoon]

Thanks for your concern

[Practiced]

Yes, that thick mucus is bloody annoying isn't it. I get episodes of laryngeal irritation with thick clear mucus, this come in waves but I don't get any movement disorder. It is not Covid related in my case. Hoarse voice is a problem for me, it can be hard to talk. I wasn't blaming my PD but maybe it is the cause. I take it your mucus is clear (not infected). Don't forget that common BP meds (ACE inhibitors, and less often A2RB's) are common causes of laryngeal irritation.

[DogsWoode in reply to Practiced]

I get this too. I thought allergies but lately thinking more PD related. Thick mucous in throat that requires insistent clearing. In waves like you, Practiced, no movement disorder otherwise. Can cause hoarse voice. Not covid related....have not had covid, Hmmm. Curious.

[Nikosmom in reply to Practiced]

Thanks for your concern. My mucus is clear and not infected. After covid my voice got hoarse but it could be a coincidence and be caused by PD instead. I think Ambroxol might help along with NAC to thin out the mucus

[DogsWoode]

Following that thought, I wonder Nikosmom if you move into a panic attack because the throat clearing os so difficult. And scary. You become worried you can't catch a breath. That stress exacerbates any and all PD symptoms and your poor body moves into a dyskinesic reaction. Might be worth moving to a meditative practiced breathing quiet stance to reduce the panic and stress. Maybe concentrate on quiet music or rhythm. Your body would stay calm, your breathing focussed, the clearing of mucous quietened. I may be full of bunk but I just know how my body reacts more violently with any stress. It sounds really tough for you.

[Rufous2 in reply to DogsWoode]

I hope you'll forgive me for weighing in a third time when I don't even have PD, but I just feel so badly for you and can hardly imagine a worse feeling than not being able to breathe.

I think DogsWoode is onto something with the slow controlled breathing suggestion. Fast breathing (whatever the cause) leads to an imbalance called respiratory alkalosis, which feels like a lack of oxygen but is actually a lack of carbon dioxide. Respiratory alkalosis can cause a plethora of symptoms, from anxiety to lightheadedness, to numbness and tingling, to shortness of breath. The last one causes even deeper faster breathing, which increases the alkalosis.

Problem is, relaxing and breathing slowly in this state can be near impossible. One trick is to exhale through a straw for several minutes. Doing so slows down the outbreath to an 8 or 9 count, stimulating the vagus nerve and activating the parasympathetic (calming) nervous system. There's a "meditation necklace" that's based on this principle, but a straw is a lot cheaper!

komusodesign.com/products/t...

If you're physically unable to slow your breathing the cause could be neurogenic and a trip to the neurologist is warranted. Hope you feel better soon.

[Nikosmom in reply to DogsWoode]

Thanks for your concern. It can’t hurt to try what you are suggesting. Have a ydsy

[RBan]

I had a similar experience but not nearly as drastic. My doctor prescribed mometasone nasal spray. It’s got a bit of a steroid in it. that really helped but I haven’t got off yet so I’m not sure if it has taken care of the problem Also is good to go on an anti-inflammatory diet, avoid dairy and gluten and other food that builds up your phlegm. Also helped me to suck on fisherman‘s friend lozenge

[Nikosmom in reply to RBan]

Thanks for your concern. I am already on an anti inflammatory diet and I never eat dairy. Nevertheless my inflammatory markers are still high. I’ll keep working on it. Have a great day

[RTT1961]

I live ia Mexico and a close friend of mine is en epidemiologist who was responsible to develope the program to control COVID pandemic in 2021 in my home state. I forwarded him your post and he says that most long term COVID symptoms in Mexico are lung related and he suggest you to see a pulmonologist rather than a nose, ear and throat doctor. Hopefully this can help.

[Nikosmom in reply to RTT1961]

Thanks for your concern. I appreciate your efforts on my behalf. Bendiciones.

[Redginger]

Praying for you, as I'm sure this is incredibly frightening when it happens and frustrating that you have not been able to get diagnosed and helped. God help you.

[Nikosmom in reply to Redginger]

Thanks so much for your concern. I appreciate your support. Blessings

[LAJ12345]

Here is a useful clip on breathing properly for energy

theenergyblueprint.com/the-...

[Nikosmom in reply to LAJ12345]

Thanks

[barrie1757]

NAC helps thin mucus. but doesn’t eliminate it. It should allow you to cough it up. I personally find gargling with sea salt in warm water to be as effective.

Ask your doctor about using a nebulizer. It can help with opening your airways.

[Nikosmom in reply to barrie1757]

I have been talking NAC but I need to take a higher dose. Thanks

[Hihills]

I had these symptoms when living in mold and now when I go back into a moldy building. I am currently seeing a naturopath who specialized in mold treatment/detox. That has helped my symptoms a lot. There are many Facebook groups about mold toxicity and symptoms that have also helped me.

[Nikosmom in reply to Hihills]

Thanks for taking the time to write to me. Initially i was convinced it was mold but the ear/nose/ throat dr. Ordered some allergy tests and mold did not show in my blood.

In 2010 i was exposed to mold and i was sick with severe respiratory issues for 6 months My blood tests showed significant presence of a particular nasty form of mold I was diagnosed with Parkinson’s disease after and i have always wondered If the mold had something to do with it Blessings