Extreme muscle stiffness

[Daisies22]

Six years ago I was diagnosed with Young Onset of Parkinson's disease. I was prescribed Madopar and Pramipexole which later was replaced with Rotigotine transdermal patches. I had a very strong but paradoxical reaction to all three dopaminergic medications and eventually l

ended up in A&E where my dose was increased thus making my life more difficult.

A few days ago my extreme muscles stiffness became so bad that I have difficulties breathing, I feel as if I'm going to suffocate. This happens every time I take madopar Immediate Release, which is seven times a day. I also experience chest tightness which really scares me.

I was wondering if there are other people who live with PD and have experienced similar challenges. My question is how they managed to get the severe muscle tightness, which is a side effect of the Madopar, under control.

Is it known what exactly is the underlying mechanism of triggering such an instantaneous whole-body reaction?

Thank you,

[park_bear]

Hi Daisies. So sorry this has arisen. Some discussion of breathing difficulties in the last half of this post: healthunlocked.com/cure-par...

[Daisies22 in reply to park_bear]

Hi park_bear,Thank you for the link. I have read it a couple of times. It was an eye opener for me when I first read it. Sadly, it seems that levodopa overdosing is "all around us" but for some reasons the Neurologists chose not to see it. In my experience, the patients are left to deal with the consequences on their own.

Thank you again.

D

[DiyChas in reply to Daisies22]

That is the impression we have with my wife's neurologist who doesn't seem to have much experience with levodopa.

[Glenfarclas]

Have you contacted your neurologist or family doctor? Just concerned about the trouble breathing part.

[Daisies22 in reply to Glenfarclas]

Apologise for the delay in replying. I did read your message and then couldn't find it again to respond.Yes, my Neurologist is aware of my symptoms but unfortunately for me he explains everything by transferring the blame onto the patient. In this case the explanation was "this is your Parkinson's disease"..

[Routine100]

My wife is taking madopar and her reaction to this medication is similar.The dose was reduced reaction not as serve, but still no answer. I am working on getting hyperbaric treatment but this is dffcult beacause it is not recongized as a treatment for Parkinson's in Israel where we live. Ask your doctor what he knows about this treatment perhaps it is possible for you. Fell better and keep looking ffor a cure

[bigl62 in reply to Routine100]

I did 40 dives of HBT cost me $5k and no symptomatic improvements

[LAJ12345]

how long after taking it does it happen? It sounds like overdosing. The same happened to my husband. Try slowly reducing each dose. If you get the white tablets rather than the capsules they are easy to cut. Try taking one tablets worth of quarters out every 3 days for a while and see if you feel better or worse.

you might find you can eventually reduce each dose by 1/2. But go slow

What do you mean by paradoxical reaction?

[Daisies22 in reply to LAJ12345]

Thank you for your reply.

Paradoxical reaction - when the rezult is the total opposite of what is expected when taking a particular medication.

15 to 20 minutes after taking Madopar I have the extreme reaction I described in my post. I am convinced that I need a smaller dose but dose reduction is very difficult especially if you don't have the support/guidance of your Neurologist.

[LAJ12345 in reply to Daisies22]

If the reaction is 1/2 hour- 1 1/2 hours after dose it is almost certainly too much. We only see the neurologist for my husband every couple of years and they always want to increase and add more meds. after following their advice a few times and my husband becoming so disabled after an increase he couldn't even get onto the bed by himself, and having the spasm choking and chest constriction sensation like you have I decided to decrease his dose as we were desperate and no one was available to see him. And he got so much better that we had a few good years where he was fully mobile again. You know your body and have the right to decrease without permission. Just whatever you do reduce by a small amount at a time and trial each change a few days before decreasing again. Each dose has a peak at around an hour then tapers off so the next one is on top of the previous tails of the day. If you do decide to decrease start by taking a quarter off the last few doses of the day as by late in the day the doses have compounded so nights are usually worst.

[DiyChas in reply to Daisies22]

Is it possible to ask for another neurologist? This is your life and I think we need to be proactive.

[Daisies22 in reply to DiyChas]

Thanks. Eventually (last week) I asked for a change of Neurologist as the situation became unbearable. It will take the hospital a month to discuss my case and decide whether to say yes or no.

[Zella23]

This must be very frightening for you to experience, especially with breathing difficulties. Maybe lowering the dose, with help from your Neurologist, might be worth trying.

In my experience of PD meds with my husband is that less meds, although slowness can be a result, equals less side effects. He was dx at 65.

We changed Neurologists as our previous one was guilty of increasing the dose that just gave more side effects without symptom relief. Our current one added in Rasagaline, and Amantadine at low doses, allowing Madopar doses to stay low. The side effects gradually became less although dyskinesia was still there but other side effects lessened.

[Daisies22 in reply to Zella23]

Thank you for your reply. Yes, reducing the each individual dose does help but is very difficult to achieve as I need to do it very gradually otherwise I'm having really bad withdrawal effects.

I was considering Amantadine as well as it would allow me to reduce the dose of the Madopar quicker. My question is what will happen if I do succeed in reducing the dose of Madopar and then decide to reduce the dose of Amantadine I'm talking. Presumably I wil need to increase the dose of the Madopar, which is a pointless exercise.

[Zella23 in reply to Daisies22]

Not necessarily you could reduce the dose by spreading the time you take it more throughout the day. My husband takes meds 4 times a day with 2 of the doses being a half dose. Rasagaline and other similar drugs stop the dopamine being broken down. Amantadine is usually taken once or twice a day and has a limit of 3 times. It has a mild dopamine agonist effect, usually to help with dyskinesia.

My husband found doing going longer between doses and after adding Rasagaline this was easier to do.

Altering/reducing drugs in PD isn’t easy and takes time for your body to adjust. Once you find what works stay with that dose.

[cjCardio53]

Hi , I am YOPD'er too. on 14th year now. Iam going to neuro tomorrow..my meds are not helping with gait/freezing. Last 4 months, never know how off/on I will be, then SNAP, Ican be out, at anytime of day, no matter my med schedule, and I can't fricken' wallk/move. Iam going to ask her re: apomorphine pump, and new drug crexont, coming out this month. No matter which way u slice it, PD sucks.

[Daisies22 in reply to cjCardio53]

Thanks for your reply.What you are describing sounds very familiar, that is why I am confined to the house and the back garden. With me it's so extreme that I need to lie down which is not ideal in public, especially as it could last for hours..

Reducing the dose of each individual capsule does have a positive effect but it takes ages to achieve.

My Neurologist is very dismissive and this doesn't help either.

Good luck to you.

[cjCardio53 in reply to Daisies22]

That is horrible re: your neuro...get a new one for sure. My Md is so cool she listens to me, I can email her whenever and she or her NP get back to me. she is booked out until Jan/Feb 2025, yet got me in tomorrow due to the fact I am struggling so much with my symptoms. I truly hope u find a new MD.

[LAJ12345 in reply to Daisies22]

Do you have capsules or tablets of madopar? Ask for the tablets in the 50/12.5 as they are easy to cut and each one is weaker. I assume you are taking the 100/50 capsules?

[Daisies22 in reply to LAJ12345]

Capsules only in the UK. My prescription is for 100/25.

[LAJ12345 in reply to Daisies22]

Can you get the 50/12.5 mg capsules? Maybe your gp can give you a prescription for the 50/12.5 capsules at 2x the number to take 2 of instead of 1 of the stronger ones. My husband has never been able to increase to the stronger ones without all the symptoms you describe.

You could try swapping to one lower dose later in the day and space them slightly closer if you need to.What are the dispersibles? Are they breakable? You could cut them up and use a 50/12.5 and piece of dispersible to make it up to a 3/4 dose.

I don't think you can open the capsules?

[Sherry1960 in reply to cjCardio53]

You got that right! 😵‍💫

[Bear1927]

I had similiar breathing issues and muscle stiffness issues. Are you supplementing with Magnesium?. Try adding glutathione and amantadine, as well as doing some stretching exersise and humming.

[Daisies22 in reply to Bear1927]

I am on Madopar Immediate release, Madopar Controlled release at night, and Madopar dispersible when I need it.My Neurologist has never suggested any supplementation with Magnesium, do I need a prescription for this? Also, what dose will I need, is there a protocol for taking Magnesium?

Thank you again for the information.

[HekateMoon in reply to Daisies22]

I think you dont need magnesium to be prescribed. The dose is 400mg but best magnesium citrate. What you describe sounds like dystonia and magnesium is good for cramps. I experience it when my meds are going off but it can kick in when is on. Try to find a new neuro and perhaps a parkinsons advocate to accompany or prepare you for your neuro meetings. Dismissiveness is not acceptable when your life and quality of life are at stake. Hope you get better.

[Hidden in reply to Daisies22]

I agree it sounds like you are getting too much Madopar and I am not a fan of Pramipexole or equivalent after my PwP was put on it over 6 years ago - late last year we got him off it and he is 100% better now. To answer on magnesium - no you don't need a script and if you take it make sure you have the same dosage with potassium eg: 200mg of magnesium and 200mg of potassium - 1:1 and start off low at 200mg of each and if it is not enough you can go up to 500mg quite comfortably. Be aware that if you get loose bowels you may be getting too much magnesium - just see if it settles and if it doesn't drop back about 100mg. Magnesium and potassium work in synergy and most of us are deficient due to our soils our fresh produce are grown in are deficient. We take 500mg of each every day with our evening meal and neither of us suffer with stiffness or cramping and my PwP doesn't have the twisting and clawing with his hands and feet which was very painful for him. It seems you badly need a new neuro and one who will actually listen to you and not be dismissive - those who are like that in my opinion need to go back and learn their craft again and not pay guessing games with these drugs - more drugs are not the answer as we have proven - PwP has halved his intake of Madopar and is functioning very well and much happier in himself now. Best of luck my dear and stand up for yourself with these knowalls.

[Daisies22 in reply to Hidden]

Thank you so much for the information and also for always being so understanding, caring and supportive.Best wishes,

D

[Hidden in reply to Daisies22]

You are welcome and I hope you get some resolution for your problems soon - I know how hard it can be when the people who should be helping you don't - it took me over 5 years to get a neuro who listened and would work with us and our GP to get my hubby back on track.

[Bear1927 in reply to Daisies22]

Your doctor will never address Magnesium issue or any other issue. My best advice - get topical Magnesium, and use it all over your body, especially underarms ( avoid using antiperspirants) and between the toes on your feet, let it dry naturally, even if it takes 20 minutes (you can do some Humming while you wait). Do this daily for a week and let me know if you notice any difference.

[Daisies22 in reply to Bear1927]

Hi Bear,Just to let you know that I have got some Magnesium oil and after a few applications I noticed a slight improvement of my symptoms.

I did not expect almost an immediate reaction so I was pleasantly surprised.

Thank you so much for getting in touch and also for the information about the Magnesium oil. Amantadine is a prescription medication and it will take ages to get. What exactly does it do?

D.

[Bear1927 in reply to Daisies22]

I'm glad Magnesium helped a bit. Ideally I would like to leave on sea coast and enjoy the unlimited supply of it:). Amantadine initially helped me with Dyskenisia. Now it wears off quickly. I find GLP 1 micro dosing more effective

[JayPwP in reply to Bear1927]

Would Magnesium oil help with Toe curling? Which Magnesium oil is recommended? Any specific carrier oil to look for? How much to use? Any contraindications?

[Bear1927 in reply to JayPwP]

Toe curling is something that it might not help in short term. Use as much of topical magnesium as you can, its like swimming in the sea. There are no limit. Same applies to vitamin C. Less stress, good sleep, humming for at least 30 minutes might relieve curling quicker

[JayPwP in reply to Bear1927]

I think Epsom Salt foot bath also gives similar effect but I am not too sure.

[Bear1927 in reply to JayPwP]

everything containing magnesium is good

[Daisies22 in reply to Bear1927]

Thanks. For how long have you been taking Amantadine before it started to wear off quickly? The microdosing - I'm not entirely sure what it is so I need to Google it now.Thank you.

[Bear1927 in reply to Daisies22]

about a year

[LAJ12345 in reply to Daisies22]

Ah, the controlled release might be the problem. That was what gave my husband the horrible choking. Just take the instant at night before bed then when you wake take the next. Most people can go overnight.

[Bear1927]

I had similiar breathing issues and muscle stiffness issues. Are you supplementing with Magnesium?. Try adding glutathione and amantadine, as well as doing some stretching exersise and humming.

[debmorris1]

Do fast walking or other aerobic exercise if you can and stretching. Start high dose B-1 therapy. Experiment with different types of magnesium until you find the one that works best for you and find a movement disorder specialist, not just a neurologist. Keep doing as much research as you can. You have to do trial and error. This site and the people on here are wonderful. I have halted and reversed the progression of my wife’s Parkinson’s through information from this website. We have a movement disorder specialist that understands every patient is different and listens to us.

[Daisies22 in reply to debmorris1]

Thank you for your suggestions.

I agree with you that HU is an excellent source of information, and I have met some wonderful people here.

However, you are making a very big statement here:

" I have halted and reversed the progression of my wife’s Parkinson’s through information from this website."

I just was wondering what evidence you have in support of your statement. I would appreciate a link to a peer-reviewed paper.

All the best to you and your wife.

[OKWY]

Hi Daisies22, our experiences again cross paths. My HWP also had to go into emergency, this time with a completely blocked digestive system due to a strangulated hiatal hernia.As nothing could go the oral route, the hospital pharmacist calculated the conversion from daily 500mg Madopar to the corresponding dose of the 24 hour Rotigatine transdermal patch. He was given 12mg (two 6mg patches) per day. I was expecting great things from the patches as my husband like you never had a good benefit from Madopar (although the challenge test showed he had some benefit).

He recovered well from a fairly large operation and 4 weeks now since the operation, his digestive tract seems to be working well so far. But his right leg is very rigid even when moved passively. Walking is near impossible. His occasional tremor is now practically constant and markedly increased. He still had some hallucinations. I was starting to wonder about the dosage and asked his GP and pharmacist about the correct conversion. Both had no idea and were just relying on the fact that the pharmacy department of a major hospital would have worked it out and assuming the new symptoms may just be due to the major surgery, anaesthesia, etc. After a week and not getting any better, I started to google. Given the maximum dose is 16mg, his 12mg dose seemed incredibly high. I then found a UK site that had a converter from different Parkinson's meds into rotigotine patches and it turned out the correct dose should have been 4mg. He was receiving triple that dose.

I have slowly reduced him now to one 6 mg patch and take it off during night (as he seems to make some dopamine during sleep). Symptoms are slowly improving now. His neurologist appointment is in a couple of weeks, where we will discuss whether to continue with patches (very convenient) or go back to oral Madopar.

He also had almost constant hiccups during his hospital stay. Everybody assumed it was a reaction of his diaphragm to the protruding hernia, but hiccups are a stated side effect to Rotigatine. It's quite possible the breathing problems are also connected in the same way through the diaphragm.

If you want to check the conversion, below is the conversion tool.

pdmedcalc.co.uk/calculator