Hi everyone

Im new here. The doctors think my 84 year old mum has Parkinsons but dont seem too sure. Shes been on 125mg of Madopar 4 x day since before Christmas and in the first few weeks of taking it I thought there was a slight improvement to her tremour. Since then Im not sure if its really doing much but shes been quite poorly with other things and I dont know if that has made her symptoms worse. Lately shes having a terrible time with excruciating pains in one leg, sudden boiling hot sweats and aching jaw, which I think is because she is grinding her teeth so much. One GP just blamed it all on the Parkinsons but the PN didnt agree so said she would get the physio to check her out. She said she thought the leg problem was nerves and said to ask the GP for pain killers, GP said painkillers wont help but did eventually give her amytriptalin (sp?) which might. No one has any idea about the teeth grinding. Some people are saying that problems could be the Parkinsons, others are saying it could be the medication and others saying its neither. Im sorry to go on but I dont know how best to help mum as shes in terrible pain and feels like life isnt worth living. Thanks if anyone can offer any help at all.

Welcome to the forum. Sorry you are having such a bundle of difficult problems. I know pwp s do grind their teeth because I do it in my sleep and wake with aching jaws and a little bleeding. Have you tried talking to a dentist? I knew one pwp whose teeth grinding was bad enough for her to wear a specially made plastic guard overnight and sometimes in the day.

Hello Ang2012,

Welcome to the forum, I am sorry your Mum is having all these problems, I also grind my teeth but it is my husband who has the PD not me,the dentist suggested I wear a plastic guard at night but I don't like things like that so don't.
The leg is another issue and it is such a shame that your mum has to suffer like this especially at her age I would keep pushing for an answer or request further investigation at least.
best wishes
vivian

Thanks for your replies. Mums leg seems slightly better today, she started the amatriptalin (sp?) last night and she also had two lots of cocodamol today. The specialist said that we could try reducing the dosage of the Madopar to see if it was side effects from that making her grind her teeth so we'll gradually reduce those over the next few days. Bless her, she sits with her finger in her mouth most of the day so she doesnt grind her teeth and says they feel really sharp now. Someone else suggested a teeth guard but she doesnt sound very keen and I doubt she'd be able to sleep with it.

She did have quite a tremor before but that seems slightly better recently. If it is definitly Parkinsons would the Madopar stop that? She says she'd rather have a tremor from lack of medication than keep grinding her teeth.

Also, can I ask why some people have different sorts of medication?

Hi

I thought Id do a bit of internet research on teeth grinding and PD. I found this

https://asm.confex.com/ipa/11congress/techprogram/paper_2956.htm

It says that bruxism (teeth grinding) is one of the disabling but rare described symptoms of PD. Patients were treated with levodopa-carbidoapa combination and advised to use teeth guard. All patients showed improvement in PD symptoms, as well as in bruxism.

am I grasping at straws or is it worth me asking if they would change mums medication?

Please can anyone offer any advice at all?

Hi Ang2012

I noticed that you hadn't any more responses, so here are a couple of things that may be useful if you've not tried them already.

We have an information sheet on Dental and oral health in Parkinson's - http://www.parkinsons.org.uk/default.aspx?page=11328 which you can download in Word doc or pdf format. I don't think it strictly contains any info on bruxism but it does have various contact details for dental organisations that may be helpful.

If that's of no use, then you are welcome to call our free confidential helpline on 0808 800 0303 and speak to one of our trained advisers, who include Parkinson's nurses. Our helpline webpage is http://www.parkinsons.org.uk/helpline

Hope you manage to find some useful info and advice.

Best wishes
Dave, Digital Team

I cannot speak for the teeth problems but the Amitriptyline has been especially helpful for restlegs lgs and sleep in mu husbands case . it is also used for nerve pain .
Hope you see an improvement

Hi Ang2012,

Welcome to the forum. Has your Mum been advised to keep a medication diary? It's an extremely good way of monitoring your response to medication throughout the day and pinpointing problems.Keeping a medication diary helps in communicating with doctors. Make sure to note when medication is taken, ON and OFF times (ON is when symptoms are relieved and OFF is when symptoms return), and how long each ON and OFF period lasts. Record this information for a few days and then share it with the doctor.

Include:
The times of day when your Mum has good symptom control
Which symptoms come back during the day and when (eg, grinding teeth, painful leg, urine frequency, feeling anxious, low mood, rigidity, slow movement, tremor etc
The symptoms she experiences at night (eg, sleep disturbances, teeth grinding, sweating, visits to the toilet etc)
Mealtimes, to see if the times of day she eats affect her symptom control
A diary will give the doctor a picture of life outside the doctor’s office. It will also let him or her track progress and any changes in medications, and will provide a long-term record to look back on

Example of a diary which you can also print http://zelapar.com/Portals/31/skins/zelapar/images/med_diary_dl.pdf

Here are a few more links you might find useful and will answer some of the questions you have asked about 'right diagnosis' and why people with PD have are prescribed different medication.

http://www.parkinsons.org.uk/PDF/FS94_Parkinsonsandtremor.pdf
http://www.parkinsons.org.uk/PDF/FS48_diagnosingParkinsons.pdf
http://www.parkinsons.org.uk/PDF/B013_drugtreatmentsforparkinsons.pdf
http://www.parkinsons.org.uk/PDF/FS43_Musclecrampsanddystonia.pdf
http://www.parkinsons.org.uk/PDF/FS73_MotorFluctuationsinParkinsons.pdf
http://www.parkinsons.org.uk/PDF/FS40_skinscalpsweating.pdf

I know that's quite a lot of info to throw at you, however, understanding the symptoms of PD and reading up about the different drug options, for me is the key to controlling this disease.

I think your Mum's specialist is right in suggesting adjusting medication and a medication diary would be a good way of monitoring your Mum's response. It's trial and error with the drug treatments of Parkinson's and no two people with Parkinson's are the same in the way Parkinson's presents itself (it's known as a designer disease) and their response to medication. This is why different medication are prescribed and tailored to the individuals needs.

As Dave suggests, do give the Parkinson's UK Hotline a call. It's an excellent service that provides professional advice and support through fully trained Parkinson's Nurses.

Best wishes
Cutiepie

Oh, I forgot to share with you my experience of grinding my teeth. Mine is through anxiety (another silent symptom of PD). Anxiety and panic attacks can come on due to medication wearing off. When the anxiety attacks came on, I would grind my teeth and have the most awful drenching sweats. This happened during the night too. Other symptoms returned too, eg, awful pain in left arm and leg and dystonia (painful spasms in calf and foot causing toes to claw). Adjusting my drug regimen helped. I found (and still do) a low dose of Levadopa taken more often suits me best, rather than a large dose taken less often. I also found Sinemet suited me best. Madapar made me feel very depressed and anxious and had poor control over my symptoms. So it is trial and error and 'start low, go slow' is best when introducing new medication.

Hope that helps

Cutiepie