Hi, I was wondering if anyone had any adv... - Cure Parkinson's

Cure Parkinson's

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Hi, I was wondering if anyone had any advice for me, my pd, moved up into the left side of my face and mouth.

linsoko profile image
13 Replies

Its in the left side of my body, my feet curl and in the morning and evenging towards night, can deal with that, but i am have a hard time dealing with the face pain.. What can I do for this? thank you for your responses....

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linsoko profile image
linsoko
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13 Replies
alllowercase profile image
alllowercase

Silly question, but has your PD Doc confirmed that it is PD causing it? What did he or your GP come up with for pain? I have a non-PD related excruciating pain, and they have given me Tramadol 50mg (1 or 2 up to max 4 times a day). Once I had built up to the max dose, I was able to reduce to 1 capsule 4 x daily. I try to keep it level so that there is minimal pain there, but far enough below my pain threshold that it is tolerable. Some days, I have to take one or 2 extras, but that is usually when I have overdone the exertion. That leaves me feeling secure that I still have dosage in reserve for emergencies.

Even though that is not directlyrelated to PD, I think most people with or without PD do not realise that you can manage pain to a great extent. I learned that minimal pain and lower but even doses of pain meds was better than high doses or prolonged usage of them, with the damage that is done to liver, kidneys, etc. Especially as most pain meds are paracetomol based.

Hope this helps a little

Adrian

in reply to alllowercase

Do you find that such as Tramadol sedates you?

I just take Ibuprofen for the pains which seem to help, but I would dread losing my ability to do daily tasks or not be able to drive.

The thought of that is enough to make me go cold.

alllowercase profile image
alllowercase

No, it is about the same in pain relief as my previous pain medication, but leaves me fully lucid. To give you an idea how well it works for me, my previous pain meds were 50 mg diclofenac 4 times a day coupled with 2 x co-codamol 30/500 (i.e. 30 mg codeine/500mg paracetamol) also 4 times a day. I waas on this for 3 and a half years and my GP waasn't going to change it after all that time. It did not work nearly half as well. The pain is something I'll have to live with for life, because it is caused by 2 discs at the junction of my neck and spine which have pushed my spinal cord sideways about as far as the thickness of the cord's outer membrane. At the moment, the mortality rate for the surgery is around 70%, so no thanks.

Adrian

klimmy04 profile image
klimmy04

I'm not sure whether my advice will help, or if it could even be used, especially due to facial pain, but have you spoken with a Physiotherapist to see if a Tens machine can help?

I know my husband tried using my Tens machine, that I have to use due to damage in my neck, shoulders and back caused by car accident, and it did help him re pain-relief, but of course you would need to be careful, as I'm not sure whether you can use Tens machine if you have Parkinsons Disease, I know if you suffer from Epilepsy you aren't supposed to.

anyway just another idea (although he was so fed up of having to cope with the drugs he said as long as the Tens machine didn't cause him to fit with his epilepsy he would give it a try!). I ended up using a Tens machine because I was so fed up of the side effects that the drugs the GP was prescribing for me were doing to me. The Tens machine works for me and provides me with such a welcome relief from pain and discomfort.

Anyway hope this helps.

Best wishes.

Fiona

The specific area of the pain needs to be identified - then the proper physical therapy and or treatment (Tens machine / ultrasound machine / PT exercises / etc.) can be used.

Kabat rehabilitation uses facial exercises. Perhaps helpful to you.

Be well.

Carry on strong.

PatV profile image
PatV

Does tramadol make you constipated?

alllowercase profile image
alllowercase in reply to PatV

No, and I am very susceptible to that because I had bowel cancer 25 yrs ago (14th of this month is anniversary of that op)

That is another great advantage it has over diclofenac and codeine / paracetomol based meds.

Adrian

alllowercase profile image
alllowercase in reply to alllowercase

Sorry, Linsoko

We have not hijacked your question. We hope that somewhere in this bundle of our chat there might be an answer for you. Discuss it with your GP and see what he suggests.

Adrian

carolineb211 profile image
carolineb211

I have been given a very low dose of Amitrypteline for my neck and head pain. Works wonders. It is generally known as an antidepressant but a very low dose acts as a muscle relaxant.

Caroline

alllowercase profile image
alllowercase in reply to carolineb211

Hi Caroline

Thanks for that. I will ask my GP when I go this week. Mind you, I am on the verge of changing my GP. He eas refused me2 meds in te last 2 months, both on the ground of cost. And these were both prescribed by Consultant Physicians.

Adrian

carolineb211 profile image
carolineb211 in reply to alllowercase

That is awful, denying you the meds you need!!! It must be so frustrating. I would be changing my doctor!!!.

Mine have been mostly OK, apart from the one who told me "Doesn't look like Parkinsons to me" a week before I was Dx by the specialist. GP's are jack of all trades, know a little about a lot, and as we all know ' a little knowledge can be a dangerous thing!!

soup profile image
soup in reply to alllowercase

There are rules about this sort of thing. A pharmacist will be able to explain them and Parkinson's UK helpline might be useful here too.

Polyanna007 profile image
Polyanna007

Dear linsoko

Have had PD diagnosis for two years and it progressed to facial twitching and for me personally it occasionally swapped sides, am on Requip 1 mg. three times daily

And chinn now quivers. However, was also on Cardopa/Levo and was better but drug out feeling and worse balancs loud nightmares made me stop.,sometimes, for me, it is better to increase ( as per Dr) the one that woks best before adding another My

Neurologist said side twitching in my case was usually due to not getting rest breaks durring the yday, I hope this information helps. Remedy for rest has helped my chin twitching.

Polyannua007

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