My mum is 71 she has had Parkinsons for around 12 year she has really bad head pain does anyone else suffer with this and what helps if anything ?
she takes stalevo 125mg 8-10 times a day now has her parkinsons is really bad now she has a lot of other pain all over her body to she also takes gabapentin 3 times a day and an antidepressent but doesnt seem to do much more her
has anyone on here had success with pain relief or any advice would be much appreciated
Hello Jean M
Sorry to hear about the pain that your mum is experiencing - pain can be a big issue for some people with Parkinson's. Does anyone have any experiences that they can share?
From a Parkinson's UK point of view, it's hard to give you specific information without more conversation. So it's important to speak to a GP, specialist or Parkinson's nurse. Or you could phone our confidential helpline 0808 800 0303 and ask to speak to one of our nurses. (More information about the helpline at www.parkinsons.org.uk/helpline)
You may also find our information on pain in Parkinson's helpful: www.parkinsons.org.uk/pain - there are links on that page to a free information sheet and other information and resources.
I hope this helps.
My husband has also had Parkinson's for over 12 years now. He also suffers badly from Head pains....he describes it like wearing a helmet all the time and his pain is around the ear to upper eye area. He also suffers from body pain like it is in the bones and mostly in the hips and shoulder area's. He has continually been to the doctors and mentioned it on his regular visits to the parkinson clinic, but usually gets told ' Its Parkinsons'. He has been told that he can only take Cocodomine (which afects his bowels) and paracetomol which has very little effect on helping the pain. His hearing has also been affected with it mostly on the left side. He has now to go for a MRI scan on xmas eve which hopefully they can find out what is wrong. All I can say is keep going to the doctors as eventually they may find something to help the pain. I feel it for him and also feel useless as I can not help him, but we both keep thinking the positive with hopes that they can find a cure or something that can give a bit more life back from this horrible disease.
Thanks for your reply , the nurses tell my mum to take paracetamol to but it doesnt seemed to help, she to has pain all over her body, I know how you feel bcos you desperately want to help but there is very little can actually do it is so distressing, my mum has zopiclone tablets which sometimes takes a half or a quarter they are a sleeping tablet but sometimes just help for pain relief a bit, the NHS pulled the plug on funding a duadopa pump for her earlier this year which they say is much better for people with advanced parkinsons, what chance have we got now its so unfair, my mum never smoked or drank and lived a healthy lifestyle and still can get help the treatment from the NHS, we just have to soldier on, my mum had a MRI scan couple of yrs ago but nothing showed up. Hope your husband finds help I let you know if we find anything that works
I be very happy to hear any stories from people and how they manage their pain and how the hell do people get a decent nights rest with this horrible disease my mum hardly sleeps for more than an hour at a time
I have not yet been officially diagnosed with Parkinson but I am having ongoing investigations.
For almost 10 years I have struggled with pain, hips back, shoulder knees, jaw bone (which resulted in me loosing all my (top teeth not one of the was bad) breathlessness especially going up the stairs, BUT THE WORST PAIN is the head pain I can so relate to how your husband and mum feel, the pain is like no other pain which radiates mostly on the left side and attacks the jaw bone, cheek bone, temple,ear, side and top of head, on a really bad flare up I press top of my scalp against door or wall, I have to dig my nails into the scalp and for the burning I use the cold head caps which I keep in the fridge at all times. Flare ups can last for hours (absolutley horrendous pain)
I am scared but I after years and years of pain, loosing teeth, fatigue, breathlessness, head pain/burning, depression the list goes on and on at the moment i am trying to stay positive.
Thanks Ann (Poodles)