My mother was diagnosed with advanced Parkinson's 2 years ago. She is now taking Sinemet 6 times a day with a slow release dose at night and also has the patch. She has been suffering from burning feet, painful neck, palpatations, severe stomach bloating and urinary frequency.
As she was suffering from wearing off symptoms her specialist changed her to Stalevo. However on the new regime all the above symptoms were multiplied. She is now back on her old regime of Sinemet.
After discussions with the nurse and specialist they feel that the burning feet, palpatations, bloating and urinary frequency are not associated with the Parkinson's but may be due to other problems or anxiety. Does anybody have any advice or does anybody else suffer from these symptoms? It is so hard to decipher if symptoms are due to Parkinson's, wearing off symptoms or the actual medication itself. My mother has had gynaecological tests for the frequency with nothing wrong in that department, she has had thyroid, diabetes tests for the burning feet. She herself attributes it to Parkinson's symptoms and feels slightly better an hour or so after taking meds but then the cycle starts again.
She is still suffering from all these symptoms on the old regime and the wearing off symptoms and feels she requires more medication however the specialists have advised her to reduce the meds in case the symptoms are side effects with a view to increasing the patches instead of the Sinemet to reduce the bloating. She is back to square one with no answers regarding her distressing symptoms. Any advice would be really appreciated.
these are just my personal experience and opinion and should not be taken as advice, just as an additional minor perspective.
firstly, it is very difficult to determine whether a symptom is pd, medication or something else, especially in the elderly. cutting off meds would prove it but thank god that is a practice that most doctors have stopped.
painful neck - probably the easiest to put down to pd. check her posture when reading, watching tv or on computer etc head tends to jut forward like a chickens (just like mine right now!)
bloat - very very common. but pd or meds? its either water, poo or gas. for water need to see doctor. for poo check for constipation - increase fibre (soluble (fruit) and insoluble (bran)) - for gas ? is it worse after dairy or wheat or coffee? is there burping?
palpitations - my palpitations are associated with bloating. in my case, reducing the bloating reduces the palps. not necessarily true for anyone else, but i know of a few similar people, particularly AF (atrial frib.)
urinary frequency - problems with pee are common in pd but there are heaps of other potential causes.
burning feet - fortunately not one i've had but for a few pd people this sort of pain occurs. part of pd. not sure what can be done for it. is there toe curling?
if anyone's experience differs, please help by adding comments.
I had scans for bloating and upper abdominal pain, nothing showed and I now believe it was caused by my meds - tolteradine. I noticed minor return of the problems with stalevo and have cut back to two day and sinemet the rest. I take domperidone and that helps alot with bloating.
Bloating - the gut movement slows in PD so we get these problems. (Check out Gastroparesis in PD on google)
frequency and urgency, -the untalked about very common problem. But hope your mother has been checked for urinary infection too.
Heart problems less common but can be PD related i believe and have also heard people complain about their feet burning.
the only thing i would add is that the association with palpitations is, in my opinion , under reported.
neuros cant be bothered with heart problems and cardios are not necessarily aware of pd's infinite variety of complications.
imho all doctors (correctly) deal with the most statistically likely diagnosis.the odd person who has pd doesn't fit and so is sometimes misdiagnosed by other specialists.
Thank you both for your comments. It is very helpful and reassuring to know that these are symptoms which may be due to Parkinson's as we get very frustrated with the Consultant and PD nurses when they say it is unlinked to Parkinson's and as a result we end up going down different paths for a diagnosis.
My mum has been checked by the GP and gynaecologist with regards to the urinary frequency and all is clear. She has tried a water tablet but found that although it stopped the flow it did not stop the need to go so this proved unhelpful and she eventually stopped this.
The bloating we are trying what we can to reduce this, my mum has a very good diet, lots of fibre, fruit and water and does suffer from constipation for which she takes a laxative when required. The PD nurses did suggest that maybe they will reduce the Sinemet and increase the patch next time to see if this reduces the bloating in case it is related to the digestion of the meds. I also agree the palpatations may be due to the onset of the bloating. Someone mentioned drinking a glass of warm water to encourage her to release the wind so we will try this.
The burning/cold feet is also very distressing for her and can only be slightly relieved by massage so my father is constantly massaging her feet. Again our Consultant had not heard of this or was disinterested in this symptom and that is why we are going down the route of an MRI scan. She does also suffer from osteoporosis and arthritis and has a Dowagers hump which causes severe back pain especially when on an off period and her muscles stiffen. I think my parents would be happy to have an MRI even if it didn't show anything just so that they can see what is happening with her spine and spinal cord.
The more information we have the easier it seems to deal with the problems associated with this complex disease.
Thank you again for taking the time to reply. It really does help to know you're not on your own.
has your mum tried domperidone (motilium) which can be bought over the counter in UK. It is OK to use with our meds and gets the gut working, i swear by it when I have bloating.
Impaired ability to empty the contents of the stomach, called gastroparesis, is a gastrointestinal complication of PD. This may produce a bloated sensation and cause people to feel full even though they have eaten very little. Sometimes nausea may develop. The cause is not a blockage, but a problem with the nerves or muscles controlling the emptying of the stomach. If the nerves are damaged, the muscles of your stomach and intestines do not work properly and the movement of food is slowed.
Failure of the stomach to empty in a timely fashion may also impair or delay the effectiveness of PD medications, especially levodopa, since levodopa is absorbed from the small intestine and cannot get to its destination if it is trapped in the stomach. Treatment of gastroparesis in Parkinson’s has not been extensively studied. Domperidone is an effective medication.
Some Parkinsons medications can make it worse ( from experience particularly the drugs to control bladder problems) because some slow the gut movement even more. You may like to do some research /experimenting with diet. fibre causes wind and maybe it is actually adding to the problem. For me a high fat meal (fish n chips) is particularly bad.
Sharon regarding the urinary problems here is what I have learned.
The bladder is a muscle which gradually expands as urine collects. At the opening, there is a muscle called the sphincter. This muscle is usually closed except when urinating. Both muscles are controlled by the brain. When 1-2 cups of urine have collected in the bladder, the bladder may begin to have small contractions that signal the brain that the bladder is filling up. The brain can suppress the contractions until it is convenient for the person to go to the bathroom. When ready, the brain allows the bladder to contract while the sphincter relaxes. This allows the urine to leave the bladder.
In PD, the brain’s control of the sphincter is disturbed. The bladder becomes overactive and wants to empty even when there is just a small amount of urine present. This results in following symptoms
urgency
frequency
incontinence
repeated nighttime urination.
Drugs are available but in my experience they aggravate bloating problems.
Thank you Hikoi, my mum has tried water tablets and although they stopped the flow they did not stop the need to go, so can see what you are saying about the signals being disturbed. She stopped these because they did not really help. Is there anything that will help with the need to go or is something that has to be endured?
Best to discuss with pharmacist or GP but I take one tablet day, no particular time, for a few days until symptoms are improved The package instructions say - The usual dose for the treatment is 1 to 2 tablets taken 3 to 4 times a day before meals. Do not take more than 8 tablets (80mg) in 24 hours.
Re diet
One site says avoid foods high in fat and fiber as fat slows down the digestive process and fiber is difficult to digest. Foods high in fiber can also lead to the development of bezoars (a mass of undigested material that becomes trapped in the stomach.) Strike off from your diet items such as whole grains, raw fruits and vegetable, cooked celery, cabbage, corn, beans, and cauliflower. Opt instead for tomatoes, potatoes, mushrooms, and squash. However I cannot comment on this advice as I have not changed my diet except to take small more frequent meals rather than large meals.
re bladder problems, when you find the answer do let me know!
If the bloating problem is resolved and then the meds work better this may help things. Best of luck. Would be interested to hear progress in a couple of weeks.
there seems to be contrary advice about fibre - it all seems to depend on where the slowness is perhaps???
but a low fat, low fibre, low protein diet... what are we supposed to eat? - not getting at you but there seems to be little left but water and fungus!
lol I know what you mean Turnip - my mum said the same thing - "what can I eat then ??" - however having said that I asked her what she had this morning and was going to have and she said for breakfast she had All Bran and she always has fresh fruit every lunchtime so may be a change in her diet might improve things.
My parents are very health conscious (my dad suffered a heart attack in his 50's and has radically changed his diet and has managed to reduce his cholesterol, etc) so it is alien to them not to each fibre-reach foods or fresh fruit.
I too followed the "fibre is good for you route" but ended up with IBS and the doctor advised me to cut out wholegrains and this did stop my IBS so may be it will help.
We will give it a go for a couple of weeks and see if things improve.
you are right, guess I was thinking short term intervention until bloating problem settles. I have a hunch that sorting that problem may help alot especially improve the effectiveness of medication. I was just reading a recent research article on wearing on symptom and it was linking it to problems with slow gut motility so drugs take ages to kickin. I digress. Thanks for balancing my comments.
Hi again, my mum tried the Domperidone but unfortunately experienced even more bloating than usual, so we're assuming she's not going to tolerate it, she's given it a miss today but continuing the low fibre diet. Today was a good day so maybe the diet is helping - will keep you updated.
thanks for the update. How unfortunate about the motilium, bloating isn't listed as a side effect though it can give some discomfort due to the contractions of the gut but It is generally very well tolerated. It is suggested to take before a meal as it works better. I find I can feel discomfort but 12-24 hrs later ( ie when my gut is working again) I feel better.
Up-date - mum has been a lot better this week she has increased her Gabapentin to 3 times a day and this has really helped with her back pain. However the biggest improvement has been the bloating, significantly decreased since cutting down on fibre-rich foods and now eating smaller meals but more often. As a consequence of reducing the bloating her palpitations have ceased. Sometimes she has a couple of good days, however this week she has been good since Monday, so we've got our fingers crossed - thanks to everyone for your advice! Sharon x
P.s. - burning feet have also reduced, mainly gets a tingling sensation now rather than burning, which is an improvement, this could be due to either the Gabapentin or the PD drugs working better x
she has increased her Gabapentin to 3 times a day and this has really helped with her back pain. However the biggest improvement has been the bloating, significantly decreased since cutting down on fibre-rich foods and now eating smaller meals but more often. As a consequence of reducing the bloating her palpitations have ceased. Sometimes she has a couple of good days, however this week she has been good since Monday, so we've got our fingers crossed - thanks to everyone for your advice! Sharon x