Botox and Parkinsonisms

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My dad has been diagnosed with parkinsonisms. At first he was told it was Parkinson's itself, but an appointment with a private specialist confirmed it was 'parkinsonisms' instead. His main symptom is a facial tremor which is causing severe cluster headaches. When the headaches start, he's almost beside himself with pain and has to knock himself out with diazepam!

Anyway, he's been referred for Botox treatment. It took a lot of nagging, after I read about it online. The GP and the specialist both said 'no' but then he paid privately and was told he'd be a good candidate. I think they're reluctant to refer people, as it's just so expensive. That is understandable!

Anyway, does anyone have any experience in Botox in treatment of headaches and/or/tremor? It would be fantastic if it helped my dad. At the moment, he's not got great quality of life...he's always concerned about doing something which will irritate the nerves in his head and set off the he's mostly just pottering about.

He's got an appointment with a medical Botox specialist soon. What can he expect?

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10 Replies

  • Posted

    Hi I totally feel for your dad.

    I don't have that but I've developed in the last few months cervical dystonia. I go to the local Parkinson's clinic where I see a movement specialist.

    My neck pulls uncontrollably to the left and stays there pulling. It is the most incredible pain. It's debilitating and I've not been able to do anything and am housebound 90% of the time except when I go to Drs appt and get groceries.

    Last week I got my first Botox injection. It didn't work and so I'm waiting to get a higher dose next week. They say it's trial and error on dosage to start with but also which muscles to inject into.

    I'm also on diazepam. Going up in dose as that isn't helping with the extreme pain. Tried other muscle relaxants but they weren't effective.

    Not sure what parkinsonianism is but you may get some useful info searching on dystonia too

    Hope that helps. Good luck.

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  • Posted

    Hi, I have myoclonic. Dystonia which causes my head to tremor and I hold my head to one side because my muscles in my shoulders and neck are always contracting to cause my jerky head. I have had 3 rounds of botox so far on my first visit I found it helped I would be less jerky and I could feel my muscles relaxing. It's a very quick process. They pinpoint the muscles that is causing pain and then inject you with botox it cause some pain at the point of injection , I do get I minor headache after. I also have it every 3months in out very quickly. I'm also a candidate for deep brain stimulation which I'm starting the process of which they also treat people with Parkinson's with great success. Good luck to your dad.

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    • Posted

      Hi my movement disorder is actually genetic, it is called alcohol sensitive myoclonic dystonia. If I have few drinks helps with the tremors and my symptoms. It is also called Dty1 and i have generalised or essential tremor. Confusing all these terms. Myoclonic is the jerky movements and I have dystonia the way I hold my head and in my hands. I hope this makes since I live in Australia.
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    • Posted

      Hi thanks for explaining it. how long have you had your symptoms and any other family members have it too?

      Do you also take meds for it? I've tried tha Parkinson's meds like Cogentin and Artane but it didn't help. So now on Valium. That's helping just a little not much. So I get Botox again today so hoping it will give me relief. First shot several weeks ago didn't.

      Do you have a dystonia support group there?

      Our leader here is actually moving to Australia.

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    • Posted

      Hi, my brother has it he got symptoms appeared when he was very little but they took a long to get a diagnosis because doctors knew very little about it . I developed my symptoms in my teenaged years but tried to hide it. I then went and had genetic testing about 5 yrs ago I think? I have taken clonazepam since day1 and I'm also on gabapention and Zoloft. I've tried keppra which didn't agree it made me suicidle. The botox takes a few weeks to work. I found my first round gave me relief but I have had several afterward and not working as well. With my dystonia in the neck I can live with its mild but it the head tremor I cannot stand its embarrassing. I'm actually going to do deep brain stimulation. I have to wait a yr in the public system so its free. But I will need that yr to prepare for it emotionally.I m not sure about a support group but I do see very talented neurologists at the movement disorder clinic.

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    • Posted

      I can relate to getting emotionally and mentally prepared for it. It's been since March of this year for me since I developed symptoms. Probably from taking Abilify for depression. Hoping, praying it won't be a permanent thing but at the intensity I have it now the dr said it may be

      Does the clonazepam work well for you? I was up to .75 mg twice a day but it didn't help. Only made me SO sedated had to sleep all day long.

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  • Posted

    Do not know about the plural -s in the diagnosis, but I heard that Parkinson's proper is a disease in itself, while parkinsonism may be a secondary condition e.g. after some medications.

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