Dystonia: WTF?!

[jeeves19]

Never saw this one coming. Funny, when you type this word into the search, there are very few posts with this in the title. Strange as this is becoming the symptom I fear and loathe most. During my 8 years with PD, I’ve been conscious of Dystonia in isolated areas like feet but about a year ago my diaphragm started to have involuntary contractions, for some reason when I was just settling down in bed to go to sleep 🛌. Solution: Madopar Dispersible 50. This dystonia now, if I’m really low on dopamine, attacks my stomach, feet, back muscles, neck - and as I witnessed during my ‘no drugs allowed’ period - my jaw. When this strikes I’m in a truly awful state and need to be rescued with the Madopar that I mentioned above. I’m posting because I’m sort of surprised that this symptom has so few similar ones, but then happy for the community if those of us who get this debilitating extension are in the minority.

PS. Was thinking ‘how do you know when you’re really sick?’ Answer: when the planned brain surgery can’t come soon enough! 😂😎

[Gigglers3]

dear Jeeves19. I’ve read previous posts of yours. My pd journey seems to be going in similar direction to yours though had my diagnosis end of of 2019. Will try to be brief . Some time ago you asked if anyone had experienced problems with toes. I tried to respond but reply failed & then couldn’t find post. I had terrible pain in toes, particularly in left foot. Saw Neurologist; said it was dystonia and recommended Botox treatment. Examined my toes & Said I was suitable candidate for Botox. I have had 2 treatments so far 3 months apart. Of course it wears off but so so very much better. I recommend for you. Best of luck with everything!! Hope all goes well

[jeeves19 in reply to Gigglers3]

Thanks Giggler. Wonder if I can have Botox all over? 😂. I doubt it considering the poor state of our wonderful NHS. Hang on in there.

[Zella23 in reply to jeeves19]

Hi Jeeves, in reply to the diaphragm contractions, my husband has had them a few times but they haven’t caused too much discomfort and they don’t happen all the time. Has dystonia in feet but it’s more like restless legs, but not all the time. Still is keeping to low dose meds as too much gives dyskinesia.

I wish you well on your journey in Bristol, have you made your mind up which DBS equipment you’re going to have? We know a couple of people who’ve had DBS and they’ve been very pleased with the result, but don’t know which one they opted for.

[jeeves19 in reply to Zella23]

Not really Zella. I’ve had several conversations but don’t feel much the wiser.

‘ Well do you want a rechargeable battery or non rechargeable?’ How the hell should I know? 😂🤔🤷‍♂️

[Bunny622023 in reply to jeeves19]

Interesting on the rechargeable. It was like a 'gift' when we found that Boston Scientific did rechargeable. It's a breeze and you don't sit there every day recharging. My husband often throws the belt around his neck with the 'puk' for recharging on when we are watching a movie... it's so simple. It's a God send over multiple battery replacement surgeries. Warranty on Boston Scientific I think is 15 years and I think they can last to 25 years.

[jeeves19 in reply to Bunny622023]

Bunny. Nothing I’m taking is bringing me on at the moment so forgive my brief answers. I be caught some virus and this appears to be doing a great job in stopping the meds working. Additionally I got terrible constipation from my general anaesthetic recently which I think has also not helped. Doing this with one tired thumb!

[AGH_1966 in reply to jeeves19]

I'm with you

[Bunny622023 in reply to jeeves19]

Oh no - i'm so sorry to hear that.......😑 if it's not one thing it's another. You'll get through this Jeeves. I can understand the stress with constipation as well, it's a curse, especially from anaesthetic. I can't offer any good advice apart from what we use to keep constipation at bay, being the Senna leaf tea. I hope you start feeling better soon and your meds kick in. 😇

[jeffmayer]

Yes got my levadopa challenge today I never thought I would welcome it but I can't wait

[gingerj in reply to jeffmayer]

Im in Salford Royal tonight, off meds for my levadopa challenge tomorrow at 10 in the morning. Not looking forward to how I'll be off meds.

[jeeves19 in reply to gingerj]

steel yourself young ginger! A tough but interesting experience. I’m looking at my Lowry painting as I write btw. ‘And he painted matchstick men and matchstick cats and dogs…….’ D you remember that? 😂. Marginally better than St Winifred’s Choir with annoying lispsy freckle faced child 👧.

[gingerj in reply to jeeves19]

👍🤣

[jeffmayer in reply to gingerj]

Well done my levadopa challenge just didn't sleep a wink sol I'm knackered apart from that it was on

[gingerj in reply to jeffmayer]

Yeah can't see me getting any sleep tonight 😵

[jeffmayer in reply to gingerj]

It's worse when you've just nodded off and a nurse wakes you up to do your blood pressure

[gingerj in reply to jeffmayer]

Just had mine taken for the third time 🙄

[jeeves19 in reply to jeffmayer]

what got me was the uncontrollable dystonia. I could handle the slow movements, the stiffness but the cramping is the worst. Each minute seemed to last 10!

[gingerj in reply to jeeves19]

Not looking forward to tomorrow 🙁

[jeeves19]

Oooooohhhh Jeff. Dying to hear how it goes for you! The most difficult symptom to have to tolerate is dystonia. But not all Parkies get this!

[Bunny622023]

I love your sense of humor Jeeves and positivity even when things are not going how you would expect.... how any of us would expect. Mind you expectation is a difficult word when in conjunction with Parkinsons I feel.

My husband had dystonia in the foot, first symptom but it went away once he started on Amantadine back in 1998. Hasn't had it since.

As for the botox in the whole of the body... this is what I mean Jeeves - 😆 that made me laugh.....

[jeeves19 in reply to Bunny622023]

🤭😀

[Bunny622023]

Hi Jeeves, do you know whether you are having the DBS implant into STN or GPI yet?

[jeeves19 in reply to Bunny622023]

Hi Bunny. I’m presuming they’ll put it in the place that is best for bradycardia, dystonia and rigidity as these are my main symptoms. I have begun to get dyskinesia recently however which I think is dealt with by the ‘other site’. This concerns my a little. I don’t like the concept of either/or.

[Bunny622023 in reply to jeeves19]

Mmmm not so easy. DBS is fantastic but it's not the answer to everything. My husband was offered GPI because it's easier on the cognition. STN we were told is better for less medications, so that would mean less Dyskinesias for most. In reality my husband should have taken that option as he has been on Sinemet so long that Dyskinesias are pretty much ramping up again because as the PD progresses he is needing to take more meds. At present he is stable though - thank God... 2.5 x 200/50 Sinemet CR - 4 times per day. Different programs on the DBS are targeted to different contacts on the implants though, depending on deepness of the rods.... it's an extremely interesting thing. He had one rod deeper than another so certain contacts were targeted to help more on the dyskinetics and other contacts helped on the speech. The trouble with all of this over time, for him anyway, is that the PD progresses and then you need to adjust programming, but there comes a time that nothing helps. EG: nothing helps with his walking or speech..... the PD progression is the problem. Medications help a little for a certain amount of time. Catching that 'sweet spot' is of course 'the ultimate' want. BUT Jeeves - life is bloody good. We are very lucky that he can do nearly everything still - whether it's walking with me, the gym, cycling, driving, going on holiday - the down side being he will have 8 to 10 falls per day, and his voice is very quiet and slurred many days, and untold saliva is the problem of the slurring. There seems to be no answer to excess saliva, and I certainly don't like the botox intervention that is offered. Wish you well with your DBS - I expect you will find it life changing.

[Bunny622023 in reply to jeeves19]

I think you will find that with Parkinsons, there is always an either/or.... it's unfortunate. We've had it too often. Change parameters on the DBS and no Dyskinesias, but at the expense of terrible speech or more falls. It shouldn't work like that. Normally DBS does not help with gait and falls.. if anything his falls became worse with DBS.

[Nuthatcher]

I also have dystonia in my left foot. It seems to be traveling up my leg. I have had it since the beginning of this PD. I get the Botox every 3 months and it helps. Unfortunately you can’t get Botox up your leg muscles. I’m wondering if this is how people end up in wheelchairs?? My foot is becoming kind of deformed. I was diagnosed in spring of 2019.

[Gallowglass]

I have toe dystopia. When dopamine is low my toes involuntarily curl and uncurl. Toes hurt all the time. I’ve learned to ignore it but it makes is hard to sleep. I have cut ace bandages into 6!inch segments and weave them between toes. Then put on socks. It gives enough relief to get to sleep. High quality cbd hemp cream helps too.

[fnedorez70]

Do you take magnesium supplements? I found that taking 450 mg part in the morning and part at night helped me with the problem

[jeeves19 in reply to fnedorez70]

I used to and May start again if you feel tgatir might help.

[fnedorez70 in reply to jeeves19]

I take citrate and Magnetin

[photo-man]

Hi Jeeves 19,

I have not experienced any dystonia, I do get restless legs which affects my sleep several times during the week. I am taking Madopar or Co -beneldopa/Levadopa 12.5/50mg 4 x times a day but this now seems to be not a effective as it used to be. My neurologist prescribed Amantadine 100mg a day but I have not tried it yet as I have to do some blood pressure checks and see my Doctor before he prescribes it.

Anyway best of luck, I hope all goes well.

photo-man.

[jeeves19 in reply to photo-man]

good luck to you as well. 😀

[JustJeff]

Hi i also have diaphragm contractions making me squirm only intermittent during the day i also take dispersable madopar first thing in the morning and last thing at night

[jeeves19]

the Dispersible is valuable at such a time isn’t it?

[beehive23]

the reason why there are very few posts...relatively is because once we become dystonic.......we are preoccupied with staying alive..hang tough....