My husband has developed excessive sweating to the point of drenched and during this time his leg is writhing and twisting to the point he can't walk and the pain is excruciating. These episodes can last for an hour up to several hours, and they happen now 2 or 3 times a day. He is on madopar 100/25 every 3 hours and uses mucuna 40% ldopa when needed. He still works ft, but he can't maintain with these huge ups and downs and very scary symptoms. I guess I just don't know if I should be taking him to ER, but we would be going there constantly. I'm at a total loss as to what to do. The neurologist knows of my husbands struggles, but has only upped or lowered his madopar dosage, he's never been able to get it right yet. Has anyone experienced this or have any suggestions. Much appreciated 🙏 Mel
How do you know when to go to emergency w... - Cure Parkinson's
How do you know when to go to emergency when PD symptoms are beyond erratic?
“leg is writhing and twisting” - This is dyskinesia which is the result of too much levodopa medication. Does this ever happen first thing in the morning before he has had his meds? Or later in the day? If the answers are no and yes, respectively, that confirms there's too much levodopa.
Unfortunately the emergency room is not a good idea for Parkinson's issues. Emergency departments are not set up to deal with Parkinson's. Chances are they will halt all meds, which could be disastrous, and work him up for stroke.
Hi PB, Thank you for your reply. Frankly, I am at a total loss re his medication and responses. He has had his dose lowered and upped over the years and nothing seems to work for long. The dystonia dyskinesia is now just an almost constant. If he goes off the madopar or barely on it, he is so stiff and slow, with extreme muscle tension and violent tremors on right arm left leg. He seems damned if he does take levadopa and damned if he doesn't. We are both at a total loss and the excessive sweating is very scary too! It can't be good for him. The constant pain and twisting on and off for hours at a time on a daily basis s taking a toll on him in every aspect mentally, physically, and emotionally. I am beside myself as well. I don't want him collapsing from losing electrolytes and from the leg that is totally out of control. It's thrown his back and hip out and now he has to get physio every week sometimes 2x a week. He has had cortisone injections to quell pain in his foot, shoulder, and back, but that doesn't last and it doesn't stop the writhing. We feel totally lost at sea and sinking fast! I have asked neurologist so many times for extended release he says it doesn't work. I've asked for Amantadine, but says not until madopar dose is right, which it's never been right for long. I ask re botox, I don't even know what his excuse for no is there, but it's a no. He finally prescribed ongentys. This seems to have made matters worse, but I could be wrong. It's supposed to help smooth out off times, but it hasn't yet. It's like my husband dives off a cliff every 2 hours. Watching him suffer is beyond me. I told the Dr if your dog was doing this, you'd put him down. Anyway, thank you for listening. I don't know if there's any help for him at this point. I'm just so worried and I honestly don't know where to turn to anymore 😞 Mel
I get it - he needs the levodopa to control his Parkinson's symptoms, but it is prone to triggering the terrible dyskinesia.
I've had a similar problem in a much smaller way recently. My solution has been to reduce my dosage of carbidopa levodopa ER and add entacapone which gives a smoother ride than without the entacapone.
In your husband's case, with a 3-hour dosage interval extended release formulations of levodopa will “stack”. You could go with a higher dosage of an extended release formulation at a less frequent interval. When I say extended release formulation I'm referring to madopar HBS, carbidopa levodopa ER, or Rytary. To do something like that you would of course need a cooperative MD. Worth a try to see if his primary care physician will work with you on this.
Well, we can't even get the Dr to prescribe extended release anything. His neurologist appt is next week and I will literally beg him for Amandatine and maybe a dopamine agonist. I feel like every time we see this Dr he just placates us. And if we go to another neurologist, we wouldn't even know where to begin. I feel that's what we will have to do though and hopefully they can look at him with fresh eyes. Something has to change that's for sure! His GP has prescribed the neuropro and stalevo, but we are worried about trying stuff without the neurologist in the loop. And since you only see the neurologist few times a year, it's impossible to keep him up to speed if we were to go with the GP prescriptions etc. I feel like it's just a never-ending cycle and I fear we won't be able to get a handle on it. I'm sure glad you were able to sort your issues though and hope you continue to keep symptoms at bay 🙂
A neurologist who “knows” things that are not true is value subtracted rather than value added. His statement regarding extended release - “it doesn't work” - is not true: pubmed.ncbi.nlm.nih.gov/901...
Comparison of immediate release and controlled release Carbidopa levodopa in Parkinson's disease. A multicenter 5-year study. The CR First Study Group:
“There was a statistically significant difference (p < 0.05) in activities of daily living as measured by the UPDRS in favor of Sinemet CR.”
My advice: Fire the neurologist and work with your cooperative GP.
Thank you PB, I'm sure this neurologist has his reasons, but I'm not sure I can get onboard with how his non treatment treatments are working or should I say not working any longer when it comes to the overall wellbeing of my husband. It's actually cruel to let him suffer for so long under his care. I have showed him videos and he barely looks at them . He just draws the graph and says he's not getting into the zone. I just hope this week's appointment the neuro will finally try something other than madopar🤞
It is cruel, irresponsible, and frankly, pathetic. Levodopa induced dyskinesia is a very well known problem in the treatment of Parkinson's, most typically caused by excessive peak levels of levodopa. The well-known solution is to provide a more even plasma level of levodopa. He has got no excuse for failing to respond appropriately to this issue. (It crosses my mind to suggest printing the foregoing out and handing it to him. I will take full responsibility for the comment -PB)
Rytary is the most sophisticated oral solution to this problem and accordingly commands high prices for doing so. Does he think Rytary does not work also?
Your GP is on the right track by prescribing stalevo. It is immediate release but contains entacapone which helps to smooth things out. As I mentioned earlier I use C/L ER plus entacapone which provides a smoother ride yet.
This problem is solvable. Keep at it, do not take no for an answer, and you'll get there.
Thank you PB. I am taking notes from all the good advice I have received on this thread and will be asking for these changes. It seems so insane not to even try to add something when the Dr knows he has severe dyskinesias, no matter how much or how little madopar he takes in a dose . I will def let you know if we get a new regime this week. I'm so hopeful, but also not since I have asked for these changes before. Thank you again for your help 🙏
> no matter how much or how little madopar he takes
Dyskinesia can occur in many different patterns. Peak dose is the most common, but dyskinesia can also occur in the off state or be biphasic - occurring at middling dose ranges. If it is possible to discern a pattern that would be helpful, but in any case, maintaining a consistent levodopa level remains the best way to avoid it. For a complete catalog of all the different varieties of dyskinesia see:
drive.google.com/file/d/1FG...
Tai Levodopa-induced Dyskinesia 2018.pdf
Hey PB, Thank for the link. He's def peak dose, mid dose, and low dose dyskinesia now. Pretty much once the drug gets through, it's just up and down from there. Tomorrow is a big day for us with the neuro and well I'm gonna see if he finally believes us re how tumultuous his reactions to madopar is. I think I'm gonna get another neuro Dr even if his current neuro finally helps him or not. I'm over this guy! Thanks again for always listening and helping!
how accurate is the concentration of levodopa in his MP? And how much does he take of it? It could be it is pushing his dose up too high as without carbidopa he might be getting an irregular amount from it especially if the amount given isn’t accurate. It does sound like an overdosing of levodopa.
Why not remove that for the time being and instead take an extra 1/4/ of instant release c/l tablet between doses around the middle of the day. Not in the evening when it is easy to be overdosed.
Hi LAJ, thank you for your reply. His MP is Barklowes 40% and he'll use about 1/4 tsp in-between his madapor doses. We do remove it from time to time as well, but he says it helps him with his ON time better, but then he pays the price coming OFF later. We have tried quick release madopar broken in half as well. I just think he has no real tolerance to this stuff anymore 😞 Interesting you say not to have an increase in the evenings. Unfortunately for my husband he is a shift worker and ends work at 11pm most nights. He just takes his same doses pretty much from 930AM til 930PM. Maybe he should try bigger doses in the AM then taper off after lunch time? I feel we've tried this in the past, but maybe it's time to try again. Thank you again.
yes the natural dopamine cycle peaks at midnight and is at a low at midday if he is making any of his own so if the first dose is in the morning each subsequent dose builds on the tail of the last one so night time it can get too much. Having said that I don’t know what happens to the natural cycle for a shift worker.
Above is my picture with what I think happens in a day worker at least and was my husbands experience. I tabulated each dose and his side effects every hour for several days and this is what I feel was happening
Is he taking 5? When is he suffering the most? I think if I was him I would try taking the first 2 the same way to build up again to good level then see if he can either stretch the next out to 3.5 hours and take only 1/2 at night . Or if that seems a bit too little, in the afternoon take them say 4 hours apart with the remaining 2 quarters from night pill at the 2 hour marks.
If he is home during the day try making him a chart to fill in with the following headings. This is what hubby’s looked like. I could see the evening was worse, the morning and early afternoon was manageable.
Time. …. Dose. …… Side effects/ eg rigid, frozen, shaky, good
9 100 mg. ……….. shakey a bit
10. ………. Good
11. ……….. Rigid
12. 100 mg. ……….. Shaky frozen a bit
8pm. ………… Spasms, rigid, agitation
ps I wonder whether rather that feeling the price coming off he isn’t in fact feeling the price of the peak of the madopar being bumped up with the tail of the MP?
They have different profiles the madopar peak and the MP peak with the MP being longer and lower so it could well be pushing the following madopar up too high because when the benserazide from the madopar gets into the system it will mean more of the levodopa from the MP will become effective too . If you want to keep on with the MP perhaps reduce the madopar doses instead. Ask for some 50/12.5 tablets as you can more easily take an accurate lower dose. Eg 1.5 x 50mg.
WOW LA, you are amazing! I am so impressed with your graph and keeping track of your husband's reactions. My husband writes down all his reactions pretty much every hour every day of the week and we both tried to graph it once or twice, but we gave up it was so hard to do! But he still writes down every dose and his responses which is incredible. We don't know if it is a good thing to do or not since literally every day is different for him. I have thought about you suggestion re doses and timings and we tried it today, but his 3rd dose sent him over. So maybe if we do the higher dose of madopar every 3 hours for the first 2 doses of the day and then reduce the doses for the remainder of the day to the evenings? Its worth a try, I think and no mucuna for now. Thank you again for your help!Cheers
Mel
Sounds like an absolute nightmare for your husband to suffer and for you to watch. My husband had a similar experience, with dyskinesias from too much Madopar and the Neuro kept upping dose but never really spent enough time with us.
We changed Neuro with the help of our GP and we changed to a different hospital. The treatment was so different. The Neurologist went back to my husbands childhood to find out about him - they were so thorough. They added in Rasagaline and then Amantadine which helped so much over a period of months and he lowered dose of Madopar.
Recently he is adding in a very low dose of Neupro to see if it helps give more movement and less back ache and doesn’t make dyskinesia worse. He is seeing him in July to see if Neupro is helping.
If you can change Neuro I’d go for it, might take a while but the support is invaluable if you can find one to work with you. All the best to you, I feel your pain 😔
Hi Zella, Wow that is exactly like my husbands situation with this neurologist presently. I am so glad you guys found a better Dr, they sound amazing! I hope my husband will find one just like yours did 🤞 We have an appointment this week with the neuro I am literally going to beg him for Amantadine. I mean what harm can it do to just try it, right? If it makes things worse, we will stop it, easy enough if you ask me. Is your husbands neuro in Australia by chance? I'm do glad he found one that cares, it gives me hope. Thank you for your reply.Cheers Mel
Hi, unfortunately we re in London, but fingers crossed, there must be more caring ones in Australia. I can’t see the harm in him being given Amantadine even if he tried it and it didn’t suit. My husband takes less Madopar than he did than when dx over 7 years ago as the dyskinesias worsened when the dose increased. The additional meds he has as mentioned above help with getting the balance to help with PD symptoms, as you know it’s never easy.
He prefers to be a bit slower than overdosed and writhing with uncontrolled movements. It is still a work in progress but it helps when you get the right support. All the best to you and your husband in your search.
Hi Zella, I swear your husband and mine are the same. He told the Dr he'd rather not take anything and just put up with the symptoms, but then the shaking slowness sends him mad after awhile and then he takes the madooar. He's tried to tell the Dr the drug is causing the dyskinesia, but it doesn't seem to register. He just says if you take more you won't have it which we've done and still had it. We even asked the Dr to put him in hospital to do a dose cycle or observation, but that might be too extreme? I'm going to insist we get Amandatine and I'd love him to give botox as well to ease the twisting pain in that leg. I feel like the fact his dosing is so extreme its causing irreparable damage. I sure hope not. Thank you again for your advice, I hope you and your husband will continue to have success.
Neurologists come from a different angle. They think the more C/ L you take the more help you get and less writhing. In my husband’s experience nothing could be further from the truth. All the increased doses he had up to about 4 years after dx just made the dyskinesias much worse.
Two years ago the new Neuro, wearing the Red light hat, and a few other alternative things I think have all helped with symptoms. Updated the Red light hat last year, it’s not a miracle but it helps from my observation. 👍
healthunlocked.com/cure-par...
Yes, this is exactly what's happening to my sweetheart. I swear it's so hard to watch! He has been using the red light hat for a couple of years now. Not sure if it helps, but I just believe in the red light so does my husband and he will keep using forever it think.
we just had a week away and didn’t take the hat, it definitely makes a difference, unless it was just the grandchildren running us ragged😬. He’s going to use it forever I think too.
We re just sitting here chatting as it’s early morning, no writhing, no dyskinesia, premedication enjoying good movement. In an hour or so the dyskinesia may be slight or not, after meds. Yesterday was worse with them quite a lot of the day. the day before really mild.
If no meds slow movements.
Left off the last Madopar pill last night, didn’t need it. Such a balancing act, as you say so difficult to watch.
Ok your husband is my husbands twin. He loves the morning, he calls it the calm before the storm. Don't get me wrong, if he tosses and turns in bed his arm will shake and wake us ( I'm originally from California, so I used to wake as if an earthquake was happening 😬) but now I'm used to it. But he can fall back to sleep and when he does get up, he usually holds off for an hour or even more before he starts the madopar. Then just like clockwork 45 minutes later the writhing begins and he asks me pretty much daily, " Why do I take this stuff?" Yeah, the struggle is real.
definitely- now trying to work out if holding off one of his 3 meds and not taking them at the same time will help but I think we ve done this before, like Groundhog Day.
Occasionally it makes a difference but then the next day will be back to square one. The clocks have gone forward today so another pill juggling act!
Omg totally groundhog day! Everyday is the same but different. I tell him, at least there's consistency is the inconsistencies. Just now he text me "what should I do I can't walk" and he's at work. I just said ok stop the meds ride it out if you can and then just let the stiff and slowness take over and we have also added in the breathing technique Aaron suggested in one of the posts on this thread. He says he's soaked and breathing. It kills me l!
It must be, I think the stiffness and slowness are often preferable than the drugs! It must be so awful when you get a text to help him with freezing, I do hope the breathing helps.
Fortunately my husband was retired when he got the dx so didn’t have to factor working into the mix. After your visit to the Neuro this week, if he isn’t helpful, definitely research for a different one, preferably who specialises in Movement disorders. It must be hell on earth, for him to be suffering like this and awful for you to see and not know what to suggest.
Yeah, every time I get a message like that from him while he's at work, makes my heart sink. Sadly I get them more often as of late. My husband would love to retire and I feel cruel sending him off to work. But then I know it helps him socially, mentally, and it gets his mind of PD, kinda. I must say him working ft and fighting his own body is an incredible feat. I tell him he's superhuman, but he just says he's not the man he used to be 😔Tomorrow is the neuro appt I'm hoping we will have a breakthrough, if not we will def be changing neuros!
When he gets into that state he can try to calm down by using a technique called the "Physiological sigh", what is this?It's a breath technique that puts the nervous system from the sympathetic nervous system into the parasympathetic nervous system by stimulating the vagus nerve.
How?
In this state his mind is going crazy, it's stressed out to the absolute maximum.... to turn this around do this:
You may need to lead him by doing it as well, firstly take a DEEP breath through your nose but don't breathe out yet you need to literally draw on that breath again ( basically a double breath ) through your nose hold it for a second or two and then exhale out thru your mouth... but the deal is this exhale must be a little bit longer in duration than your inhale thru your nose. Keep doing this aa much aa you need it, or until you see his body unlock and he starts to rest a bit more.
I have another thing that helps with sleep of the same nature if the poor guy needs it too 😉
May I just pay my respects to you as a loving wife, still walking what seems like hell on this earth, but it's still by your husbands side no matter what.
My wife is the srame and I can not physically put it into words how much i love her for the help every day that she unselfishly shows, I'm with no doubt that your man feels the same way about you. Xx
Hi Aaron, first of all you made me cry with your sweet sentiments re your wife and your compassion towards me, Thank you so much! You're wife knows how lucky she is, I have no doubt! I will definitely tell him about the breathing technique, I am so happy you shared this info here. Thank you again for being so kind.
Cheers
Mel
Do you have PD nurses in Australia ? We do in UK and they know so much more than doctors. They are dealing with only PD. Would DBS help?
Hi Jeanie, I wish! I have not found PD nurses to be a thing here, but they sound amazing! I have asked the Dr and pretty much you're on your own , or well that's been our experience at least. He basically goes to drs to treat each of his symptoms. He sees the gp, physio, osteopath, chiropractor, you name it we try to tackle the pain, but the pain is caused by all the twisting for hours. If we could just stop the twisting, then maybe he'd be able to manage life a little better. As for DBS, my husband says "if they can't get the meds right why should he trust them with brain surgery?" Let's just say his confidence is low when it comes to various treatments. It may take some convincing one day, but I guess I don't blame him for being worried. Thank you again for your message 🙂
So sorry for everything you and your husband are going through. I can feel the frustration you have with your neuro. You have been very patient with him. In my opinion maybe too patient. Your physician should be willing to see your problem and troubleshoot it. He should listen to and address your suggestions. He should be able to think out of the box. You certainly should have confidence in him. If you are willing to find a new physician try asking PWPs about their MDs. Your PT may know a few. I have had some luck searching online and reading their reviews. I would also make sure that your Neuro is a Movement Disorder Specialist. I wish you and your husband luck in this journey.
Hi Sane, Thank you for your reply. Yes I think we are beyond frustrated and we are ready to find a new Neurologist. It just so sad we have given this top doctor in this country so much of our time and money and have literally gotten nowhere. He is a movement disorder specialist as well, but you wouldn't know it sadly in our experience. Yes, I will definitely have to source more help from the GPS here. It's just very time consuming and expensive. We did ask the speech therapist re a Neurologist and she gave us a name. I tried to do a review search of him, but nothing came up. Australia is very small population and I think Neurologist are far and few between here unfortunately, so reviews can be scarce. Thank you again for your kind words and caring enough to reply 😊
Has he tried Sinemet plus? 29 years in we have found less is more. Too much medication has all kinds of side effects. There are also dopa-agonists but these can cause compulsive behaviour though not in everyone. I agree with the others about you changing your neuro.
Hi Jeanie, No we have never heard of sinemet plus. The Neurologist he has had for the last 5 years has only prescribed madopar and madopar rapid. He did prescribe azilect, but my husband was worried to try it. I will definitely be asking for new drugs this visit. I'm not leaving without an Amantadine rx and a dopamine agonist. It's definitely time to try something different! My husband and I both believe less is more too, but we gotta try a different drug just incase it makes him semi stable. Thank you again for your reply and I am looking for a new Neurologist Pronto!
Nothing has really touched my husbands sy.ptoms. He had to give up working and then the intense cramping started. C/L did nothing. He then tried rytary and that took down the crampsby 90%. We cannot do without this drug now. You could try that. These cramps ae agonizing and he would be up and i would be up stretching out his limbs around the clock. I took shifts with the kids. They would stay up until 1am and then i would take over. Trully horrible. Give Rytary a try
Hi QW, I am so sorry to hear about your husband's suffering and I know how hard it is for you to watch and for your children as well. It's very frustrating when the so called gold standard medications don't work. You feel even more helpless. I am encouraged by your husband feeling better after taking rytary and I will definitely mention this at the next appointment this week. Thank you for taking the time out to share your story and I wish you both continued success in this battle.
My Hwp was switched from Sinemet to Rytary. The Rytary has really helped cut down on the intense cramping and he is able to walk unassisted much more each day.
I was waking up every night 'drenched' in sweat. I'm post menopausal and knew this had to be the Parkinson's and autonomic dysfunction. On another PD group a woman recommended the herb sage for the sweating. It worked the 1st night I tried it. Took 2 capsules and it regulated my internal thermostat. No more sweating. You might give it a try. Probably won't help the dyskinesia which is another issue. This is the brand I use:
amazon.com/dp/B07MD3M5SR?re...
Hi Beedie, Thank you for this suggestion and the link. I will order some asap. I am so encouraged, because the extreme sudden sweating scares me! I have gotten him all kinds of things to help him cool off, but it's difficult to manage it when he's at work. I just don't think it's healthy to lose so much water rapidly, I worry he will collapse or something . Thank you so much for this advice and for sharing your experience.
I can't say much except that YOU NEED A NEW DOCTOR.
Someone here had reported that the excessive sweating was subsided after taking B3
This sounds like a horrible situation and my heart goes out to you. For what it’s worth googling the sweating issues I got info that seemed to imply it’s often because of changing dopamine levels so he may benefit from trying to even out the levels, and it’s worse for those with diskenesias.
There’s also info on the Uk site … seems they can use Botox to treat it:
parkinsons.org.uk/informati...
My hubby has the opposite problem of no sweat so we don’t have experience with this. Fingers crossed you can take some of this info to a doctor and get some help.
Hi Lehar, Thank you for your reply. I definitely think it's the dopamine and the disease. It also doesn't help his sweating issues, when he's incessantly moving 24/7. The sweating is a new symptom, for sure though. He used to never sweat. In fact he didn't even use deodorant. I was so amazed back in the day by this. Thank you for the link. I never knew this re botox, I thought they just used it to help stop the dystonia. Now I have TWO good reasons to beg for it at the next appointment. Thankbyou again for your advice.
can try madopar hbs it’s slow released
Hi limcheese, No he has not tried any slow or extended release. We asked the neuro for it, but the neuro says it doesn't work. He explained it takes too long to get from your stomach to your small intestines and therefore loses its effect apparently or according to him. So he won't prescribe it. Do you take it or know somebody who does? Did it help? Thank you for your suggestion 😊
my hubby tried that and it nearly killed him, made him suicidal and made him feel like he was choking. It was way too strong. But he is only on the 50/12.5 fast release and the HBS is 100 so a big increase. That might have been the problem.
Hi LAJ, I remember you telling us re this. I do not want that to happen. Thank you for reminding me. I'm so glad he's doing better these days in that regard. I remember how awful it was for you both.
yes, he has never been as bad since. Has had a bad patch over summer as usual but back to level again. I know he is on the mend again when he starts playing old favourite tunes and I hear Meatloaf Bat outa hell!
yes tried before until I got DBS. I feel like compare to stiffness and tremor that require high levodopa concentration in blood, excessive sweating maybe require not so strong long lasting dose. HBS maybe able to help. However I only took it during night time. Or maybe you can try rytary.
Hi Limcheese, you might be right re sweating etc. Since this is fairly new symptom I think it must be the combo of the disease progression and the dopamine. We will mention it to the Dr again, since I think suddenly losing all your water in one hit is dangerous. It looks like someone poured a bucket of water over head right out of the blue. It's a scene, that's for sure.
My heart goes out to you and your husband after reading your posts.
My first thought is that maybe he’s dehydrated? I read somewhere that to prevent dyskinesia when medications first kick in, you should drink a large glass of water when medication is taken. This prevents medication from being absorbed all at once and allows the meds to ramp up slowly.
And if he is sweating a lot he is probably losing potassium, magnesium and sodium so he should be consuming electrolytes as well.
Hi Debgiffen, Thank you for your kind words. I have def been making sure he's drinking tons and drinks with electrolytes too. He supplemts with magnesium thankfully. I am going to try getting the sage supplements that was recommended on this thread as well. I'm really hoping he will notice a difference once we get them 🤞 Thank you again for your reply and advice.Cheers
Mel
What are you doing to prepare your loved ones to care for you and your affairs when you can no longer care for yourself?
What to do when things go wrong with PD medications?
Is there anyone with DBS taking Madopar or Sinemet and then added Azilect?
When do I give up trying to help.
