Sheila
Forum Replies Created
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Hi everyone
I am from Melbourne Australia. Hi to all the other Aussies – not too many of us but good to know we are represented.
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Thank you, Tim, for responding. I’m sorry you are also having to deal with these symptoms. Good luck with your team of doctors and do please let me know if they come up with anything worthwhile because anything at all that can relieve these awful and debilitating symptoms would be so welcome.
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Hi everyone,
My husband has many of the symptoms described here – he was diagnosed 5 years ago and the first 3-4 years were very manageable but getting much harder now. The very worse symptoms he has are what we call his “hot head syndrome” whereby his face and head feel hot and pulsing although he doesn’t look hot or even feel hot when touched. This symptom is very distressing to him and he has to go and sit in a cold room with the air conditioner on and often enough a fan blowing directly onto his head. It can take an hour or more for him to start feeling better. This symptom is usually accompanied by an upset stomach or a sense of indigestion. This is not helped by the usual medications for reflux/indigestion. A gastroscopy showed nothing unusual. No-one else has reported symptoms like this, doctors seem to be at a loss and I have searched the Internet for clues, all to no avail. Please … is there anybody out there who can relate to these symptoms and perhaps give us some clue as to how to manage them.
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Hi everyone, I’ve been reading the posts on this forum for a while and found them most informative and helpful but this is the first time I have responded. My husband (age 77) was diagnosed with PD in 2017 and for the first 3 years or so was very well managed. Then he started rocking and swaying quite a lot to the degree that I wondered if he would actually topple over! He never has but it does worry me. His neurologist dismissed this as dyskinesia and I’m reasonably happy to accept that but do wonder if there is something that can be done about it. However, more recently my husband has been suffering with what he calls “a very hot head”. It doesn’t look hot or feel hot to me but it clearly worries him a lot – he says it feels like his head is pulsing with heat. The only thing that helps is for him to sit in front of an air-conditioner on a very cold setting and also have a fan blowing directly on to his head. The medications he is on are levodopa (Kinson), Azilect and Madapar. I am wondering if any of you have experienced this type of side effect from PD medication or if anyone knows it as an actual symptom of PD itself. We have spoken to several doctors, nurses and other medical professionals but nobody seems to have an answer.
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Sorry to hear it didn’t help, Tim. That is so frustrating but you have to try everything possible as we are doing. We recently heard of a study that concluded Gluten could exacerbate Parkinson’s symptoms so my husband is now trying a 3-month trial of a gluten-free diet. It’s probably a long shot but who knows? Worth a try I think.
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There has been no CAT scan or MRI as yet and thank you for this suggestion. I will raise the possibility with my husband’s neurologist next time we see him.
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Hello George
I don’t have PD but I have experienced the sort of numbness you describe – in my lips and also my tongue. It turned out to be a vitamin B12 deficiency and as soon as I started taking vitamin B12 supplements the numbness disappeared and hasn’t returned. Worth a try I would think and I hope it helps you.
Sheila