Restless legs

[tudorwood]

Hi all, my wife was diagnosed September 2016 with PD, she has steadily got worse, her speech is now more or less non existent, just a feint whisper and her walking and balance are dreadful breaking a wrist and cracked ribs, on top of all this she is racked with pain and just recently suffering with restless legs during the night, any help please, she has tried pain patches, she is now on Zomorph ( morphine ). Andrew

[johntPM]

What PD drugs is your wife on?

What PD drugs has she tried in the past?

For the restless legs, has she tried ropinirole?

[tudorwood in reply to johntPM]

she is on a cocktail of drugs for her PD and other issues, PD she is on 4x125 Madapar 2x125 Madapar slow release, 2x100 pregabalin for restless legs which has been working until a few days ago, she is also on mirtazapine for low mood and anxiety and Zomorph tablets and liquid for pain

[chartist in reply to tudorwood]

tudorwood,

The oral morphine can have drawbacks in that it can slow down the digestive system to the point of constipation and it can slow the healing process for the broken ribs and in some people it can make them feel "high" or lethargic. A way to lessen these negative effects is to ask your doctor to write a prescription to a compounding pharmacy to make a lotion with equivalent morphine that can be applied topically instead of systemically. This achieves several benefits over the oral route. One it will have little if any effect on the digestive system, two you will be able to apply directly to the areas of pain and be able to reach local tissue levels that can be more effective than the oral dose is capable of. Three, topical application is less likely to slow the healing process from the fall. Four this method is less likely to give any "high" or undesired effect.

In some cases, this cream can be applied to the spine and or hips in an effort to control RLS. Here is a link that goes into a bit more detail on morphine cream and it would probably be best to apply it with a thin glove so as not to put it on the hands unless pain relief is needed for the hands.

practicalpainmanagement.com...

Many forum members have found HDT/B-1/Thiamine HCL to help ameliorate some of the symptoms that your wife is having. Here is a page that lists most of the symptoms that forum members have found various degrees of relief using various dosages of B-1 :

healthunlocked.com/parkinso...

If you are considering HDT/B-1 for your wife, here is a link to a page that will answer most of your questions on the subject :

healthunlocked.com/parkinso...

For RLS, some people have found magnesium oil/mag oil/MO effective by applying it around the hips and spine and or directly to the legs. Here is a link to a product that costs $10 and will be plenty to test it for pain also. It also can relax muscles, relieve headaches caused by tight muscles in the neck and shoulder areas and alleviate leg, foot and toe cramps in minutes. I'm not recommending this product, just using it as a basic example that costs only $10 :

amazon.com/Magnesium-Oil-Sp...

Read some of the reviews of this product to get an idea of all of the things people use MO for.

Good luck and keep us posted on how your wife does!

Art

[Sandmanliz in reply to chartist]

CBD ointment on back of legs

[Hidden]

Pramipexole

[pvw2 in reply to Hidden]

This worked for me, but mine was related to REM sleep at night and not when awake.

[Hikoi]

Tuderwood, Aweful for you and your wife. Thoughts to you both.

[tudorwood]

Thank you Hikoi

[johntPM]

I am not a doctor, so make of this what you will.

If this were a straight PD drug issue I would look at it in the way shown below. But given that there may be interactions with the other drugs, I think that you should discuss the regimen with your doctor.

Regarding the Madopar, the levodopa equivalent daily dose is about 700 mg per day (4x125x1 + 2x125x0.7). This may be too low for your your wife to cross the therapeutic threshold. In addition, Madopar has a short half-life (about 90 minutes) so the concentration of levodopa goes up and down between doses. Is the pain correlated with the timing of the doses? Are the pains dystonic (often cramping, and with a strange posture)? If they are, a higher dose of levodopa may help.

Ropinirole can be useful in treating RLS and since it is a dopamine agonist it adds to the levodopa equivalent dose. On a mg to mg basis it is about 20 times more potent than Madopar So a 4 mg pill will be worth about 80 mg of Madopar. It also has the advantage that it has a long half-life, 6 hours. A word of caution: for some people dopamine agonists are linked to compulsive behaviours.

[tudorwood in reply to johntPM]

She has tried Pramipexole, its wonderful for RLS but she found it causes insomnia, has anyone else found this is the case and if so how do you manage to get a good night’s sleep?

[parkie13]

Have you tried thiamine HCL? You could try 500 mg in the morning and 500mg at lunch. For most of the people that have Parkinson's it does help. You could increase the dosage to 1000 mg in the morning and 1000 at lunch within a week's time.

For RLS trying massage and magnesium oil.. one of those massagers that you can buy on eBay or Amazon made by Homedics with two balls works really well. Massaging legs, both calves and thighs, applying magnesium oil and rubbing it in helps. Putting her legs on heating pad helps after you did a massage and the magnesium oil.

[alexask]

I would echo Vitamin B1/ Thiamine. Hitherto I never noticed any impact, with Mannitol and exercise controlling most of my symptoms. But then I did start to get issues with my legs especially at night. But a mere 100 mg per night of B1 seems to have resolved this.

Tis interesting because September 2016 was when I started to lose my sense of smell, and then my handwriting deteriorated, and I couldn't sleep at all. Or go to the toilet . And then I discovered Mannitol. That and exercise really sorted out the bulk of my issues. Still getting more and more lurid dreams though.

I really really need to finish that online survey for you all....

[parkie13]

Try melatonin for dreams it really helps

[1LittleWillow]

I take magnesium glycinate with a little calcium at bedtime. That eliminates my RLS (if I skip it, the RLS comes back). I also take magnesium malate in the AM and magnesium threonate at noon (my daily intake is about 120% of the RDI). I take 500mg to 1g per day of B1 (thiamine HCL), which has helped many of my PD symptoms.

I tore my rotator cuff in 2018. During the 4 month period prior to having surgery, I was in constant pain. I used CBD oil and took curcumin, and both helped significantly with no side effects.

[Sapeye2020 in reply to 1LittleWillow]

I was using Mg Bisglycinate for 3 to4 years with some success for night time stiff/cramping legs, but changed to a new form of Vit C that has Mg ascorbate as one of 8 forms of Vit C. Brand is Roots , Vitamin C-8. My legs still bother me at night but nowhere as before. I also went back to Mg citrate for constipation so I get a fair supply of Mg daily as I take a morning and evening dose of both pills. HTH

[philipstar]

How very worrying for you and unpleasant for your wife. I have also suffered from speech problems but nothing like this severe as what you describe. I have found that Jim Donovan's Sound Solutions is very good

news for my voice he suggests a number of voice exercises, but whether that would be helpful for your wife I just don't know. With reference to restless legs I take Gabapentin at night and have found this really helpful for calming my legs.

[Hidden]

Magnesium oxide 420 mg works good muscle rigidity and constipation I take 4 pills daily or as needed.

[Newbyhere]

Two things that, together, have really helped my husband’s restless legs: older generic drug, gabapentin (400 mg at bedtime), and newer, very expensive Neupro patch (6 mg). Both are very helpful and together he really sleeps well with no restless leg syndrome. For a long time before his PD diagnosis and after until these drugs were prescribed, he could hardly sleep at all due to rls. Hope this info helps.

[bubee]

Check out side effects of mirtasipne and any other drug she is taking. Bubee

[ScribblerCLT]

So sorry for your wife. I can only relay my experience. DXed in Feb 2018 at 52, but convinced I've had PD since 2013 and possibly 2009. I'm a professional communicator and still have a very load voice, but am quieter and slurred when I'm tired. Balance is bad, but walk fine. RLS. Active REM. Arms clumsy and hands clumsier. Can't write anymore. 1000mg Sinemet a day and 200mg Sinemet CR at bedtime takes edge off my symptoms. Pramipexole worked wonderfully for 4 months then I augmented when I tried to raise it from 0.125mg, so the somnoligist started me on the tiniest doses of gabapentin (100mg capsules), and I've been vilely nauseous, dizzy and clumsy for two weeks, but the legs are finally calm and nausea easing off. Apparently the adjustment period to gabapentin, an anti-convulsant, is similar to Sinemet, a dopamine agonist (??). So expect to feel well in two weeks. And melatonin, which I've taken for two years, seems virtually useless in my case. So I've concluded that my best bet is exercise, which consistently helps. When I stop working, likely in a year or so, I'll try to maintain 3-4 hours day of walking/running/yoga/boxing or anything that keeps me moving. Bought a Cubii Jr. under-desk elliptical for times when I am too unbalanced for the full elliptical. A day without exercise, and I can feel it right away. Good luck.

[koshca]

Melatonin plus cannabis.

[jenniferdunstan]

I had success using neurontin (gabapentin) for restless legs. I used it for a couple of years but the trade off was brain fog. So I stopped taking it but given the scale of pain your wife is experiencing, the possible relief may be worth some brain fog.

Oddly, my restless legs stopped and I began getting dystonia in my right foot to the extent that I'm now going to start Botox injections in my toes to relieve the cramping, once the covi crisis has passed.

Best wishes you find some relief quickly!

[MerckK]

Reading many posts in this forum, I have arrived to a conclusion that more the medicines, more is the suffering. Cracking of bones cannot be due to PD but can be females generally have this problem. She must be requiring calcium and protein with vitamins. Bone density can be examined before switching to any supplement.

[aspergerian in reply to MerckK]

Google:

prunes bone health.

[ScribblerCLT]

Hello everyone: I just wanted to update you on the gabapentin I was taking. I know it works very well for some people, but it was disastrous for me. At 200 mg once a day after two weeks, I felt so awful that I was sent to ER in the middle of a pandemic. All my vital signs looked great, so the ER doctor concluded I better get off the gabapentin. My sleep doctor agreed. I did some more digging, and I found that the US FDA has recorded that gabapentin can cause spontaneous breathing problems in patients. I am never going to touch an anticonvulsant again. The Sinemet has never worked as well for me as it has for others in my support group and I think I’m simply one of those people that don’t take well to drugs. Anyway, I’m going to go the exercise and diet route as much as I can.

[aspergerian]

There may be clues in:

Brain Glucose Metabolism Heterogeneity in Idiopathic REM Sleep Behavior Disorder and in Parkinson’s Disease.

2019.

Available via: academia.edu

[aspergerian in reply to aspergerian]

Or, see:

Abnormal pattern of brain glucose metabolism in Parkinson’s disease: replication in three European cohorts.

2019. Open access.

link.springer.com/article/1...