Restless legs, Parkinson's and Meds

[Jess123dog]

61 year old, female, currently otherwise pretty healthy, I was DX about 18 months ago, but probably started symptoms up to a year before that, it is hard to tell as I had some kind of illness at the time that meant I was extremely fatigued most of the time and either bed ridden or couch bound.

I only started meds about 9 months ago after suddenly starting with restless legs and being unable to sleep at all.

Initially started on one or two 12.5/50 Madopar over night with sporadic ones through the day.

Fast forward to a week ago I was taking one 12.5/50 Madopar and one 100mg Mucuna (Source Naturals), every three hours otherwise I am extremely uncomfortable.

Last week I made contact for the first time with my Parkinson's nurse after feeling overwhelmed by being 'on the clock', day and night, every three hours. And still not always feeling medicated enough. Also, this was just after a visit to my neurologist who had tried to make me feel bad for upping the dose (he thinks I should need no more than 4-6 per day and I dare not even tell him about the Mucuna) when I am still recently diagnosed. Added to that I have lost a lot of weight in the last few months.

The much more helpful Parkinson's nurse (in a phone call) gave me a prescription for slow release to take over night (2 x 25/100) and suggested I double my dose through the day (so 2 x 12.5/50) and try to make that last 6 hours between doses, until she can see me in a few weeks time. I think she is then going to stat me on a low dose of DAs although I am nervous about that, but will give them a go with her supervision.

I have double dose but they are barely lasting me 4 hours before I start the neurological s**t show that happens when I am not medicated.

Has anyone had a situation like this? Is this 'normal' for someone to so quickly become dependant on needing medication so regularly? Even without restless legs my other symptoms would still kick in just as quickly.

I would appreciate any help/reassurance.

[Juliegrace]

The standard dose in the US is 25/100, so two 12.5/50 is not excessive. You need what you need, so try the new regimen that the nurse suggested and go from there. I recommend you tell her about the mucuna though, and try the DA if they prescribe it for you, just carefully monitor (or have someone else do it) for compulsive behaviors.

[Jess123dog in reply to Juliegrace]

Thank you for that Juliegrace and I hope you continue to improve after your DBS, you have been through so much, I also have a wonderful husband Who supports me, but i don't know how much I could take.

[Bolt_Upright]

You might want to join the Zoom calls MBAnderson is so nice to host. Lots of nice people who will offer advice and moral support:

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[Jess123dog in reply to Bolt_Upright]

Thanks Bolt, I will look into that 😀

[MarionP]

I dug this up. No guarantees of course.

Of interest may be the meds in the gabapentin and pregabalin variety, the so called "gabapentinoids." Also consider whether you have something in the area of D3 deficiency or iron deficiency. Just was reading through it is all.

prevention.com/health/a2042...

You may want to take a look at the websites of Mayo Clinic and Cleveland Clinic about restless legs syndrome.

[Jess123dog in reply to MarionP]

Thanks MarionP I will do that.

[1LittleWillow]

I'm sorry I can't answer your questions regarding meds, but I was wondering if you've tried magnesium and potassium at bedtime for the restless legs. I've had pretty severe restless legs at times, but as long as I take those supplements at bedtime, I'm fine. I actually take magnesium in the morning and the afternoon as well, but I have to take the bedtime dose to keep the RLS under control.

[Jess123dog in reply to 1LittleWillow]

Thanks 1littlewillow, I take magnesium and potassium but not always at bedtime so I will try that thanks. Can I ask what you use for potassium, is it the product called lo salt and how do you take it and how much. I think I might be potassium deficient to be honest. I recent hair test analysis said I am and sodium too.

[Buckholt]

I’m 9 years in and in that time I’ve had settled and unsettled periods in my condition. It’s so difficult to identify why things go out of control, but the trick is not to panic and raise your anxiety, ( easier said than done). Managing PD for me is about keeping a fine balance between sleep, diet, exercise, stress etc and routine helps a lot. I had a particularly bad period about 18 months ago which came out of nowhere, when I developed restless legs in the evening and this affected my sleep, I became stressed, and things got worse. So I took more meds, stopped eating, lost weight and things got even worse.

I realized I was in a negative spiral and had to stop it. So I slowly started to reverse the changes I’d made, reduced my meds, started eating more, tried to stay calm and go back to what I was doing before. Things did recover. Whether this was because of what I did, or whether it was just a natural cycle I don’t know.

At that time, I also started taking CBD gummies and oil at night, having heard about the therapeutic benefits and I think this has helped me a lot for reducing anxiety, pain and improving sleep. Would happily share my source of these is you are interested.

[Jess123dog in reply to Buckholt]

Hi that is all great advice Buckholt. Nice to think that just because things are going in the wrong direction now it doesn't necessarily mean that it will always be the case. What happened to the restless legs when you reduced meds? They are my worst symptom at the mo, without that I could reduce meds a bit straightaway. I live in the uk, would love to know about cbd gummies but not sure if they are available here?

[Buckholt in reply to Jess123dog]

Yes my legs did get better, although I still get periods when the problem resurfaces but this time I stick to my plan and ride it out as best I can. What I have found useful is a short nap in the mid evening and also having a distraction like a film. I find using fine control of my hands, like using phone, tablet or any sort of fine manipulation, makes the problem worse .

There are lots of CBD suppliers out there but I use Supreme CBD. They may be the UKs biggest outlet and have good reviews. The stuff isn’t cheap but I think you get what you pay for as a lot of stuff out there is very weak. They are good at giving advice if you message them, and there is also advice on their website.I started with their low strength oil at first but found real benefit when I went up to the 3000mg oil and strong gummies. I notice that they have a two for one sale on at the moment and if you use promo code FOWLER40 you should get 40% off on top. supremecbd.uk If you use X or Twitter, they are active with deals and feedback on there.

(No, I have no association with them!)

[Jess123dog in reply to Buckholt]

Oh you are uk too, that's fantastic advice and recommendation, thank you.