SOB Shortness off breathe.Anyone have experience with this phenomenon?

[snorre]

Hello.

I have a new problem that is bothersome and I would be very grateful if anyone has experience with this and what was tried to deal with the problem.

I have reduced the sinemet dose by about 20% now and think it has helped somewhat but have only been talking for a week so early to comment.

So, if anyone out there has experienced the same thing, it would be great to hear from you.

The symptoms are that the throat tightens and then, within seconds, I begin to hyperventilate or increase breathing frequency.

Very uncomfortable and no help to get from a neurologist or GP.

What has happened since I started reducing sinemet is that the low blood pressure has become lower and I understand little of this as I have previously been given the reason for my low blood pressure is the use of the sinemet , this by an expert in the field.

It makes little sense that when I reduce the cause of the problem then the problem gets bigger?

Attaches an article that Hikoi sent me that shows a possible connection between Parkinson's disease and SOB

atlasofscience.org/breathin...

[Astra7]

The other day my neuro told me if you drink 400ml of cold water, your low blood pressure will be ok for 4 hours.I’m trying it.

[park_bear in reply to Astra7]

Expanding blood volume, and thereby increasing blood pressure, by drinking plain water will not last very long because the kidneys excrete the water to maintain a constant concentration of electrolytes. Drinking isotonic saline (saltwater at the proper concentration) is more effective because it avoids this issue.

However, before any interventions are undertaken to modify blood pressure it is essential to have a blood pressure cuff to make sure you are not overdoing it. In the case of low blood pressure due to orthostatic hypotension (loss of blood pressure upon standing), this is often accompanied by supine hypertension - excess blood pressure upon lying down. It is imperative to check for this to avoid the possibility of dangerously high blood pressure.

[snorre in reply to park_bear]

Thank you for your answers. As you say , be careful with this stuff. I am afraid 😨 this situation i am in now. All alone and when SOB hits my BP goes crashing from 80/50 to 185/100 and i feel like shit. I am afraid for damage my head with this high pressure . it doesnt feel good to lay down on the bed

[park_bear in reply to snorre]

You are right to be concerned. When your blood pressure reaches those high levels you should not lie down flat. Arrange a couch, recliner, or bed so you can rest reclining instead.

The medical words that describe your blood pressure problem are: "Parkinson's Cardiovascular autonomic dysfunction". This merits the attention of an expert specialist M.D., possibly neuro-cardiology: en.wikipedia.org/wiki/Neuro...

If you are able to access a university teaching hospital that is a possibility.

This is a long shot but it is cheap and quick and I have actually had good results from MDs here: justanswer.com/home-page.aspx They have got neurologists and cardiologists.

[snorre in reply to park_bear]

Thank you so much

This is in norwegian and the konklusjon seems to be to higher the level the head-side of the bed by 10%. Unbelievable if it is true.

[snorre in reply to snorre]

tidsskriftet.no/2012/08/noe...

[park_bear in reply to snorre]

I am wondering if you have orthostatic hypotension – fancy medical words that mean blood pressure that changes with posture. Does your 80/50 blood pressure occur as a result of standing? Does your 185/100 blood pressure occur as result of lying down?

[snorre in reply to park_bear]

Yes i am agree. But the problem is accelerateing ,starting 1/2 year ago and the throat is closing more and more and it is starting to be difficult to breathe.

So what to do now?

I am trying first to reduse the amount off sinemet because sinemet can give low blodpressure whitch again gives SOB shortnes off breath Whitch i think is my problem for the time.

It is a terrible situation not to get enough air

I am grateful for any proposal and thank you for helping me.

[snorre in reply to snorre]

I am wondering if you have orthostatic hypotension

Yes , i have .

Is there any medification for this and how is it interaction with sinemet , eldepryl and parkinson ?

[park_bear in reply to snorre]

You state that the breathing difficulty is a result of the low blood pressure - so if we can remedy the low blood pressure the breathing difficulty should improve.

When Sinemet causes orthostatic hypotension ("OH") it is the carbidopa component that is at fault. See here:

cambridge.org/core/journals...

In this case the patient's OH resolved by switching from carbidopa levodopa 25/100 to carbidopa levodopa 10/100, thereby reducing the dose of carbidopa, leaving the levodopa unchanged. How much Sinemet are you taking?

Selegiline / Eldepryl can also cause OH, see ncbi.nlm.nih.gov/pmc/articl... under the heading Monoamine oxidase inhibitors. This link also has a list of treatments.

Are you taking any other Parkinson's medications?

I will give you a quick way to remedy the low blood pressure. But first, it is important to understand the body has two different blood pressure control mechanisms. There is a fast acting postural control of blood pressure that when disrupted results in OH. There is also a slow acting system that takes many hours to change blood pressure. A person with OH will suffer low blood pressure when standing during the course of the day, resulting in a slow rise of blood pressure, peaking at bedtime in the evening. So interventions to raise blood pressure should be done very first thing in the morning upon arising. The simple way to do this is to drink one quart , or one liter, of isotonic saline. Isotonic saline is prepared by adding 9 g of salt to 1 L of water or, 8 g of salt 1 quart of water. Drink this when you wake up and are done being in bed. In the evening check your blood pressure when reclining to ensure you have not aggravated the high blood pressure at this time.

[snorre in reply to park_bear]

I take 9 tablets 25/100 with 2 hours between eatch dose. Starting 09:00 oclock in the morning

I started this one week ago from 10,5 tablets before.

Thank you for all the great job you have done for me.

Should i stop taking eldepryl first (10mg)?

[park_bear in reply to snorre]

Yes you can try that. Meanwhile make it a priority to get carbidopa levodopa 10/100 to get the carbidopa well below the maximum recommended dose of carbidopa 200 mg/day.

[park_bear in reply to snorre]

Also worth adding CoQ10 to your regimen if you are not already taking it. It has been shown to relieve orthostatic hypotension in some cases. See here:

healthunlocked.com/parkinso...

[parkie13]

If you have asthma they give you breathing exercises. Maybe it's the same with Parkinson's, maybe they would help.

[bone60]

I get SOB with low blood pressure

[snorre in reply to bone60]

That is a very good idea. How did you get that diagnosed? Any criteria I should look for? Thank you

[bone60 in reply to snorre]

When my blood pressure drops when playing pickleball my vision gets hazy and I get lightheaded. It usually passes in a few minutes. 20-30 drops of licorice helps prevent it.

[snorre in reply to bone60]

thanks for telling me bone60. maiby the solution is to reduse sinemet back to what it was before this situation? As you seid , low BP gives SOB. So , if sinemet is the reason for low BP and low BP trigger the SOB , the solution is maby to cut back on sinemet whitch has 8 tabelett 25/100 as upper limit. I started with 10,4 and is down to 9 tab but i an not happy with finding out all this by my self. But thats whats it is , who can trust their spesialist when he denied that SOB should be caused by the parkinson.

[park_bear in reply to bone60]

Licorice can be used to raise blood pressure. It is also an MAO-B inhibitor and as such helps with Parkinson's a bit. See my writing here:

healthunlocked.com/parkinso...

If you have orthostatic hypotension CoQ10 may help:

healthunlocked.com/parkinso...

As I mentioned above, anyone intervening to raise the blood pressure should be using a blood pressure cuff to make sure they are not overdoing it.

[PDGal4]

I was told by my cardiologist to eat salt for low blood pressure and orthostatic hypotension. I eat a huge bowl of potato chips every afternoon around 4.30. I am also working on drinking more water. 64 ounces/day is daunting. My initial goal is 32 ounces, not counting tea or anything else. I measure 32 ounces of water into a pitcher each morning. I think this helps low bp as well. On shortness of breath, I have been to the ER for this. They could not figure it out, but my husband researching on his phone while we waited found attributable to diaphragm dystonia as meds where off and during off periods. Since you've lowered your levodopa dose, I might look at that.

I also find meditation to be extremely helpful, reminding myself I can breathe and it will pass. It is my most disliked symptom. Fortunately seems to come and go.

[Woofie123]

Ask your Gp for a referral to a speech therapist, I’ve heard this is their field.

[Cowpatti]

I wonder if the tightening in the throat is caused by Dystonia. My husband gets spasms in his neck, back and legs. Lots of rigidity in the legs making it hard to walk. When he massages the back of his neck it seems to help him relax, and reduces tremors. He also feels short of breath when he lies down. He's tried Magnesium Malate, CBD, Suntheanine by Jarrow... all help to some degree. Anything that provides relaxation and relief. But don't forget not all symptoms are specific to Parkinsons. Tightness in the throat and SOB can also be caused by a Hypothyroid or stressed Adrenal glands. Both of which are difficult to diagnose as they don't always show on labs. I had symptoms of both but blood work was borderline. Taking herbal formulas for both have lowered my BP, Glucose, and Cholesterol, and SOB !

[snorre in reply to Cowpatti]

Thank you so mutch for your kindness .Funn to receive this post from you because i have just taken a 15 minute massage on the neck and i think it helped

Can this situation get started by the taking the sinmet dose.

The timing for this is often starting with in sekonds.

Is there a way to conferm this theori?

Thanks

[Cowpatti in reply to snorre]

Yes meds that are helping with one symptom can cause another. You must log what you take ..what and when you eat..when you exercise. We are all different so see what works best for you. I believe the dystonia and anxiety is causing most of my husbands problems. Cervical (neck) dystonia can restrict muscles in your neck and reduce oxygen to your brain. So dystonia in the legs might be restricting blood flow as well causing rigidity and pain. When you are stressed your adrenal glands go into overdrive and can cause anxiety and chest pains and SOB and tremor. He is now taking Gaia herbs Adrenal Health stress support and his tremor has been slowly subsiding. Being calm seems to be the key! I know from treating my thyroid I had to treat my adrenal glands before I could feel calm. Soaking in Epsom salt helps relax the muscles tempirarily as does CBD oil. We will consider acupuncture next. I saw a YouTube video about Renu 28 cream that helps with circulation and pain. Look at each symptom as if it were its own disease because it could be...and there may be a simple solution.

[Cowpatti]

My husband has a pain management Dr that wants to block a nerve in his neck to see if that provides relief. We're also considering acupuncture or pressure point therapy. If the temporary relief works that sounds safest to me. He also "felt" better and had more energy using the canned oxygen at high altitudes. Considering the Super Beets ( or L-Cittruline) for increased oxygen

[pdkid in reply to Cowpatti]

Hi! How are these treatments going? Are all these specifically to reduce SOB? My dad feels "weird, uncomfortable, heavy" feelings in his chest when he tries to go back to sleep after waking up to use the washroom every night. He ends up eatinga little snack and watchinga little tv to help him go back to sleep.

[Cowpatti in reply to pdkid]

Look at my reply to snorre. I do believe taking Adrenal Support herbs have helped with anxiety and tremor because calming the body down relieves the stress attacks which can cause SOB. We need to relax mind and body. Hope that helps