Autonomic Dysfunction/neuropathy

pen1

Good morning to you 😊

How discouraging for you!

My guess is that the docs know it is PD,

But do not know what to do.

Each individual body is so complex, they are in it way over their head..they simply do not know what to do.

Healing happens at a much deeper level than many of them can offer.

Have you looked into QiGong?

Much love to you💕👍🌺

From Eva G👍👍👍

Sweating dysfunctions in Parkinson's disease.

link.springer.com/article/1...

Just a (rather naughty) thought - maybe, silverstrov, you could offer to give a few presentations on the PD research you have found to clinicians in the UK specialising in movement disorders. You could certainly teach a thing or two to many I have come across - not least how to be open minded!

I have been diagnosed withPD since1995. About 6 months ago I began to experience the same symptoms: sweating , feeling out of breath , blood pressure fluctuations,arrhythmia The only difference is I Am losing weight dramatically. My neurologist says these are all symptoms of Levadopa wearing off ?I feel they do not have any solution to this problem yet.

Sorry, my example is not encouraging . I hope somebody can share with us some more optimistic information.

Julia0710

Thank you for this Julia - it helps me feel I'm not alone or imagining the collection of symptoms. I notice that you've had PD for 21 years and your sweating etc started only 6 months ago. That's pretty impressive! i thought I was an 'old stager' at 13 years and my autonomic symptoms have been obvious and getting worse for the last three. You've done so well to hold them off for 20 years! I'm making a guess that you have Young Onset? Can I ask what medication you are on? I'm taking 125mg madopar + 200mg entacapone every 3 hours from 7am until 10pm, with 62.5 mg madopar dispersible added in at least 4 times a day. I'm thinking about trying to reduce the dose as I'm wondering if the spikes are too high, making the troughs too low - and maybe this is causing the autonomic dysfunction.

investigate with TTAC Re your kast two lines LOL = absolutely

Yes, these symptoms are often due to PD or PD meds. I have been fortunate in finding Neuro professionals with very current information. I have found younger, newer trained pole to have more,knowledge of the extensive symptoms. Perhaps you could find a younger practitioner. Best of luck.

Wow my twin. Read my posts. You are absolutely correct in your thinking and assumptions. Drs will dismiss this. I'm not sure where you are but there's nothing here in the USA for motility of the gi tract. Keeping the gi tract moving is key. If you have time read my postings. I think you will see many similarities. Be well judy

Your symptoms sound like they are causing you a lot of stress which doesn't help. Stress can cause your medication to wear off quicker. There is a great book I would recommend

Parkinson's Disease ( A guide to Medical Treatment) by M. Carranza, M.R. Snyder, J. Davenport Shaw and T.A. Zesiewicz

This book is easy to read and being from the medical and research world this book does a great job at explaining things in easy to understand terms.

Pen

Yes this is all familiar to me esp those wild BP fluctuations, Autonomic dysfunction can start early sometimes before other symptoms. I don't expect GPs to be very aware of this but neuros should be. Usually it is mentioned under non motor symptoms. UK is a leader in this area especially those at Kings London. There is very little treatment that can help as some find eg with dizziness.

I am one of those that blame just about everything on Parkinson's , it is after all a multi systems condition.

I used to read a bit under this heading - Dysautonomia (or autonomic neuropathy) but it all gets a bit overwhelming I find.

A term for various conditions in which the autonomic nervous system (ANS) does not work correctly. Dysautonomia is a type of neuropathy affecting the nerves that carry information from the brain and spinal cord to the heart, bladder, intestines, sweat glands, pupils, and blood vessels.

The autonomic systems has two distinct divisions. The sympathetic and parasympathetic. The sympathetic is associated with the flight fright fight response to stress. It's main neuro transmitter is adrenaline. It is highly correlated to anxiety.... A very common problem of PD

The parasympathetic branch is associated with rest repair and sleep. Constipation,urinary retention and sleep disorders are common symptoms of parasympathetic dysfunction of PD.

I don't understand how the clinicians can deny autonomic involvement with the degradation of the PD process.

Hormones might help. Can you get your dr to do some blood tests? My neurologist told me that my sweating was not related to PD or to the meds, so we are looking into HRT. It is interesting how many women in this site seem to have been diagnosed around late 40's early 50's when hormones are changing.

If the perspiration problem in an ongoing affair your doctors should check your body's electrolyte levels to see if you have deficiencies/imbalances. This is biology class 101 thinking and to dismiss this is an absurd oversight.

What Are Electrolytes? What Causes Electrolyte Imbalance?

"In our bodies, electrolytes include sodium (Na+), potassium (K+), calcium (Ca2+), bicarbonate (HCO3-), magnesium (Mg2+), chloride (C1-), and hydrogen phosphate (HPO42-)."

medicalnewstoday.com/articl...

"An altered level of magnesium, sodium, potassium,or calcium may produce one or more of the following symptoms:

"

Irregular heartbeat

Weakness

Bone disorders

Twitching

Blood pressure changes

Confusion

Seizures

Numbness

Nervous system disorders

Fatigue, lethargy

Convulsions

Muscle spasm.

Beyond the possible electrolyte problem, there is the issue of what other body vitamins and minerals are being lost to excess perspiration. What I am suggesting is not an alteration of the underlying problem....finding the cause of a multi-system problem, but to limit the negative consequences on the body.

I posted this product before, and do not have any association with this company, but it may be a product you may want to give an (experimental) look:

dermidry.com/?gclid=CJ-psMn...

"DermiDry uses natural herbs, minerals, and vitamins to help your body's sympathetic nerve system maintain homeostasis."

It's ingredients include: Sage - Salvia officinalis

sage against Hyperhidrosis excessive perspiration

sweating-help.com/sage-agai...

Chemistry, Pharmacology, and Medicinal Property of Sage (Salvia) to Prevent and Cure Illnesses such as Obesity, Diabetes, Depression, Dementia, Lupus, Autism, Heart Disease, and Cancer

"Sage tea has been traditionally used for the treatment of digestive and circulation disturbances, bronchitis, cough, asthma, angina, mouth and throat inflammations, depression, excessive sweating, skin diseases, and many other diseases."

ncbi.nlm.nih.gov/pmc/articl...

GABA - This supplement contains GABA an inhibitory neurotransmitter which calms the mind. The only problem is GABA does not cross the blood brain barrier but people with neurological conditions have compromised BBB and it may cause relaxation.

From the product webpage: "Decreased levels of GABA in your body are correlated with anxiety, which is a main trigger of hyperhidrosis." From this perspective, taking GABA may help to calm the body and lessen perspiration.

Astragalus:

Neuroprotective effects of Astragaloside IV in 6-hydroxydopamine-treated primary nigral cell culture.

ncbi.nlm.nih.gov/pubmed/194...

Vitamin B complex (no citation needed).

Chamomile:

Plant compound found in spices, herbs increases brain connections

sciencedaily.com/releases/2...

Passion Flower - Passiflora is a strong anti-anxiety agent and cannot be taken with benzodiazepines like xanax.

Calcium (which should not be taken without magnesium), magnesium, selenium and vitamin e round out the supplement.

Looking at the mixture of ingredients it has many calming/anti anxiety agents - and this includes magnesium. A long time ago I posted this info on another thread and hope it helps you. It looks like a 1 month trial may be in order.

Rich

Hello, difficult situation for you but are you in an area where there is some choice of hospital, because it may be that the people there are not very interested in Parkinsons. You can change to another (if there is one available.

Thanks to everyone for all the information and replies. I have an appt at the PD clinic in a couple of weeks – first for two years –they ‘forgot’ me apparently. They have a policy of pushing DBS and if you don’t feel it’s right for you then they seem to lose interest. I am definitely not going down that route as I understand it’s most effective for severe tremor and tremoring is the least of my problems and it responds so well to l-dopa most people I know don’t realise I have a tremor.

I’m still reading all the links silvestrov posted and am identifying key issues to raise at the hospital. I wonder whether they will be willing to even discuss autonomic dysfunction. Usually anything other than the three ‘main’ motor problems –tremor, bradykinesia and rigidity – is dismissed as ‘not caused by Parkinsons.

The two issues I really want to discuss with my consultant – if I see him, usually I see a nice but not very up to speed side-kick - are the autonomic dysfunction and the effect of gut bacteria on symptoms. Sadly I don’t hold out much hope that I’ll get anywhere.

I’m just grateful for the knowledge this site has given me over the years. I dread to think what state I’d be in if I hadn’t found it.

PS Can't change hospitals as I had to kick up a fuss to get where I am - a large teaching hospital. Before I was being 'treated' by a geriatrician (I was 46) in a local hospital who had never met Young Onset and had no idea what he was doing. At least it made me start to find out for myself.