Head twisting

[JH23]

I am a PWP diagnosed 6 months ago aged 58, my neurologist thinks I have been suffering undiagnosed for 10 years, I am now on 25/100 Madopar 3x per day. I usually walk 3-4miles per day and have recently noticed when walking my heard is trying to turn/twist to the right, has anyone else had this issue, I am unsure is this a progression of Parkinsons or a side effect of the medication?

[Juliegrace]

I suspect it is a side effect of the medication and you might be one of the unlucky percentage who is prone to early dyskinesia.

[JH23 in reply to Juliegrace]

Thanks appreciate your reply

[Bunny622023 in reply to Juliegrace]

I'm thinking that also, but hard to say. My husbands head is a little rigid to one side and definitely it's more pronounced with dyskinesias. Also, a friend of ours has dystonia in his neck, it cause a cranking to the side when he talks and walks, he had Botox actually to correct it a few years back now.....

[JH23 in reply to Bunny622023]

Hi thanks for this, very interesting, I am due to talk to my neurologist and will mention this, thank you.

[Bunny622023 in reply to JH23]

Could also be rigidity maybe?

[JH23 in reply to Bunny622023]

Yes this is true, I hope not! thanks

[Ethin]

Does it only happen when you are in the ON state or also when OFF medication? That should help to decide whether it‘s related to the medication, or in fact too little medication. In any case, good luck to you.

[JH23 in reply to Ethin]

Thanks, thats a good point.

[Bunny622023 in reply to JH23]

Good question Ethin, as my husbands is normally when his meds are wearing off AND YET, when he is fully on, sometimes the body just says 'nope, too much Sinemet? which will cause the dyskinesia also.... very fine line some days. Good luck at the Neuro JH23.

[Ethin in reply to Bunny622023]

Just going by my own experience where leg/foot dystonia is well controlled by moderate doses of LDOPA (which doesn't preclude that it rears its ugly head despite the medication if I'm stressed by something; nonetheless, experience suggests that the dystonia is a consequence of the pathology not the medication). Of course I don't know what you are dealing with, it seems lots of different scenarios are possible with this disease.

[JH23 in reply to Ethin]

Hi Ethan, thanks for this, I am seeing my Neurologist, hopefully, he will be able to advise, as you say stress exacerbates any issues even when on medication

[Tribselyov]

I favor a function of disease as my new gimpy walk doesn’t change with meds. Now 10 years in the game

[Psalm119143]

Hi JH23, I was diagnosed Feb 22. My first indication was my voice, i had to keep clearing my throat a lot, after many tests finally diagnosed Parkinsons. Looking back i now believe i had signs pointing to P for some time. Initially I was prescribed Madopar 1x 50mg 12.5(62.5mg) twice per day, I now am on 187.5mg (100mg :25/50mg :12.5) four times daily. This is to try and control the tremor in my right arm. I have no noticeable side effects to date other than what is expected from the drug. I too now aim to walk daily at least a mile daily. I wish you well on your journey with Parkinsons. I must compliment the Parkinsons support, the have and are very helpful as have the NHS local doctors.

[JH23]

Hi Psalm, thanks for this, the NHS do a great job, I too suffer with chronic throat clearing and sore throat with many years of investigation before finally being diagnosed, it's no fun!