I have posted on here before about the episodes of overheating I get as my medication wears off ; my hair, face and back are drenched in sweat and my clothes become wringing wet. My consultant and PD nurse dismissed the idea that these episodes were caused by PD or the medication –despite the very obvious relationship with wearing off periods. . I’ve since heard from both men and women with the same experience.
The medics similarly expressed no interest in the horrible bloating I experience after even the smallest amount of food, the heart arrhythmias, and the fact that I often run out of breath half way through a sentence even when I am not exerting myself in any way that could cause breathlessness, or the dizziness and vertigo I frequently expereince.. My wildly fluctuating blood pressure Is also dismissed as non-PD related as I don’t have the typical orthostatic hypotension – my b.p. swings, apparently randomly, from 80/47 to 140/95, often within a few minutes, regardless of what I’m doing. My vast increase in weight and a metabolism that makes a sloth look like a racehorse also ‘ isn’t relevant’ . All these I have been told are nothing to do with PD despite my telling both the nurse and consultant that these symptoms become so much worse in the wearing off period and cause me much more distress than the conventional motor symptoms of tremor, bradykinesia and tremor – easily controlled with medication.
I now discover, via an excellent course run by the neuroscience dept at Birmingham university, that all these deficits are typical of autonomic dysfunction/neuropathy which is frequently found as an effect of the process that causes PD. The autonomic nervous system is involved in the unconscious activity in the body – heart rate, respiration, blood pressure, digestion, metabolic rate, thermoregulation . Degradation of this system is a common result of the death of dopaminergic cells as found In PD. It appears not to be responsive to L dopa.
Has anyone out there experienced or been told about this? And if I can find out about it why, apparently, do none of the medical professionals responsible for my care know about it?
Or do they know but feel it’s acceptable to dismiss my awareness of it because there is nothing they can do about it?
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Thank you for you kind concern. I'm not quite sure what Qigong is. I've tried Tai Chi and various types of yoga. I've enjoyed all but increasingly find that either trying to hold a position for more than afew seconds or repeating a movement more than three times makes my muscles go into extremely painful spasms. I've just started following some exercises I found on Youtube specifically designed for PwP. And I'm using one of the big gym balls to sit on and then try to lift one foot off the floor - very good for improving balance, I'm told. But nothing seems designed to improve the autonomic problems.
Many thanks indeed for this silvestrov,; yet again an extremely informative article.
I do wish we could rely on our consultants to keep up with this sort of thing. There seems to be a reluctance among many to acknowledge that PD has any significant non-motor effects apart from constipation and depression. IAnd that is depressing in itself!
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!
Yes I can bore an audience as well as any neurologist so slot me in to the UK symposium and I will see how many people I can get to nod off during my presentation. At least I would give an alternative explanation because yes, I do have an open mind. If you do not have one you will not learn much in this world.
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.
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.
I have been dx for 11 years and tend to agree with your last thought about "backing off" or reducing your dosage at least on a trial basis. Many years ago as the Lev/Carb meds started getting minds of there own as to if they wanted to work or not, I was told by my Neuro at Mayo Clinic in Rochester, MN. that I was my own Neuro. I was the ONLY one who knew how I felt. I had plenty of experience with what the meds do and don't do.
Ultimately it all lead to DBS five years ago and have remained fairly stable since. Progressions are much more noticeable when all is going well though. I seem to be more aware of the pain and cramps associated with my PD.
It never ceases to amaze me some of the bloggers on these pages try blaming everything on their PD. Am I having bradykenisia's and stiff ness/pain or am I just simply getting older and need to TFU?
Hi Pelly, I am fairly new here and newly diagnosed about 6 mos ago (tremor dominant). I am curious about DBS and while not close to considering it am very glad to hear you are doing well since the DBS. I am curious to understand what symptoms were relieved if you care to share them.
Hi Pen, I am fairly new here and newly diagnosed about 6 mos ago (tremor dominant). Recently I have begun to perspire during workouts or in the heat outdoors (without the benefit of exercise) like nothing before. The neurologists I have seen who dxd PD all asked if I was perspiring heavily as part of a questionaire. I thought the question was strange but now am living it. Of course your seems a little different but possibly related to what I am experiencing.
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.
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.
Thanks Hikoi for your comment, and a word that sums up most of my symptoms that bother me in my 4th year after diagnosis. Dysautonomia. Like you, I have BP fluctuations, changes in heart rate (for no apparent reason), motility/gastro issues on and off, eye trouble (double vision), and also the sweats. By the way, Pen, did I mention before that I think my sweats are much less a problem since I take an extra sinemet at 2:00-3:00 AM, and also am back taking HRT, which has made a huge difference. ( I suspect my sweating was more a problem of hormones that Parkinson's because of the huge improvement in my sleep right after I started taking it again.)
My last waking dose is 8 pm. Whenever I wake is my next dose usually 3-5 hours. Next dose same thing. If I wake an hour before my day begins 6 am I may take half. Waking up totally dysfunctional or just plain feeling like hell is not something I'm going to do. It effects the whole next day. Of course we risk the horrible dyskenasia. Such is our fate. Stay well and listen to your body. You know it the best. Judy
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.
Diagnosed 52 noticeable pd symptoms at 50. Major hormone change at 45. Put on birth control pill then. Switched to hrt at age 52-53. I cannot go off or lower the hrt. It definitely effects the pd. Remember estrogen and testosterone are the fountains of youth despite all the possible negative side effects. There's just too many symptoms to this disease for the medical profession to keep up. Just my opinions. Stay well. Judy
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-)."
"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:
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."
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.
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.
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.
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