Hubby is feeling like he can’t get comfortable

[LAJ12345]

He is increasingly saying he can’t get comfortable and can’t do anything as he can’t find a comfortable position. This is distressing him. What causes this? Last night his arms became very stiff and he felt like they were being pulled in.

Is this over or under medication? Is it wearing off? It seems like since he has tried the Kinson and now madopar medications he has got a lot worse. Is it due to these or is he just getting worse? It seems very sudden, as before lockdown he was doing very well.

[pdpatient]

Hi LAJ.. while I can't speculate what the cause could be, I have been told by some of the topmost MDS doctors in the USA that it is extremely slow progressing and anything that we Parkinson's patients experience out of the ordinary on a day to day basis such as sudden stiffness or hyperactivity such as dyskinesia is due to medication issues or other reasons such as anxiety.

So, I would not worry about disease progression. Hopefully this gives you some comfort.

[Hikoi]

Hi LAJ

Since lockdown I too have noticed my discomfort more. There are less distractions I guess. It is an off symptom for me and improves once medication kicks in. That can take an hour for the pills to work, but the relief is amazing. I would say he is undermedicated and the stiffness is due to lack of dopamine. You can check easy enough, give him meds when he feels like this, does he get relief when the medication is working?

[LAJ12345 in reply to Hikoi]

I’m not really sure. He never says he feels better, only that he feels bad. He doesn’t seem to think they make any difference . Before he started taking them Just prior to lockdown he was just a Little stiff but we thought they could help, now he seems much worse

[Hidden in reply to LAJ12345]

How much is he taking and of what?

There's often a threshold effect with CL, where you'll feel nothing at all up to a certain point.

[LAJ12345 in reply to Hidden]

Madopar 4 x per day 62.5. But he was better before he started on it than he is now 6 weeks later.

[Hikoi in reply to LAJ12345]

His dose is very low. Sometimes it is enough but sometimes it never gets the levels up enough in the body, as Chris says, there is a threshold.

[LAJ12345 in reply to Hikoi]

Maybe he has never reached it then. The prescription says 4 per day then he can gradually increase by 2 tablets a week. I’m not sure how you would increase by 2 tablets a week.he takes them an hour before each meal then 10 at night. How would you fit in another 2 tablets in a week?? Or does it mean 2 more per day per week?

[jeffreyn in reply to LAJ12345]

I think it means 2 more per day per week, but you should contact the doctor's office to confirm.

And have I understood correctly that he has been on 4 per day for the last 6 weeks?

[LAJ12345 in reply to jeffreyn]

Yes, approximately 6 weeks from memory

[Gioc in reply to LAJ12345]

Hi Laj,

You should find detailed instructions with an increment table in the Madopar Package Leaflet under the “Initial Therapy” chapter with a table of Dose increments up to the optimal dose. I'd send you mine but it's in Italian.

I quote

“Initial therapy

For the above, it will be advisable to start administration with a capsule or a dispersible tablet of Madopar 100 mg + 25 mg or with 1/2 tablet of Madopar 200 mg + 50 mg once a day and then increase this dosage with a capsule or tablet. Madopar 100 mg + 25 mg dispersible or 1/2 Madopar 200 mg + 50 mg tablet every 3 days until the effective individual dose is reached.

In the rare cases in which badly tolerated side effects occur, the dosage increase or dose will be reduced. When the side effects disappear or lessen, the increase will resume at a slower rate: for example, one capsule or one dispersible tablet of Madopar 100 mg + 25 mg or 1/2 tablet of Madopar 200 mg + will resume. 50 mg per week.”

Reading it all you will get a bad idea, just take a look at the table contained in the chapter "use and dosage" section "initial therapy"

Here it is:

my-personaltrainer.it/Fogli...

[LAJ12345 in reply to Gioc]

Thanks. I found an English version of this leaflet and it seems it does seem to mean per day as it says to gradually increase by 50% over 2-3 days so I guess he should try taking an extra 1 then extra 2 per day.

[DEAT]

Been dx 5 years. I take madopar 7am 12 noon and 5pm.

150mg each time.

[aspergerian13]

MDS is "

Myelodysplastic syndrome"?

[jeffreyn in reply to aspergerian13]

In the context of PD, it usually means Movement Disorder Specialist.

[laglag]

Good comments above. Also, I believe the shutdown has gotten a few people down. You aren't socializing as much, you're not moving and/or exercising as much. If he doesn't go outside & walk, have him walk around the house. He can do some chair exercises and/or sit in a chair and stand up several times. Go to YouTube and search for "Chair exercises for Seniors". PwP's need to move more than the "normal" person or the stiffness will set in. Movement is a big factor in living with PD. Reminder: It's best to check with your doctor before changing meds.

[bassofspades]

Im no expert but if it were me, I'd do a cleanse of all supplements including thiamine for a week or two. Could be agitation which is the symptom of too much thiamine. Good luck my friend !

[LAJ12345 in reply to bassofspades]

Yes I think you might be right with the thiamine. He has been taking 2x 500 for ages so I will stop that for a while too just in case and I am also cutting back the hardys too. Maybe he has replenished all his deficiencies and is getting too much now. I have tried before cutting out the supplements for a while and he felt much worse and better when he started again but who can say if any of it is placebo. The other thing is now with the madopar there might be an interaction somewhere. I am not telling him his thiamine has stopped temporarily just in case he imagines an improvement or worsening. I am also going to cut back the fish oil as Art says it can cause agitation too. He felt Much worse after salmon again so I’m starting to think salmon is a problem for him. From pristine NZ high country🥺

[bcowart]

Exercise seems to go unmentioned in many discussions of PD meds. I hear from the researchers and neurologists repeatedly that exercise is as important as medication. Especially, to be effective against progression, “forced” exercise should be scheduled at least three times a week. I have a stationary bicycle and am trying to work up to the Cleveland Clinic program of 80-90 RPM, 45 min, 3 x week. Of course that assumes the patient can do exercise. It helps me when I am stuck, symptomatic, or “off” and waiting to come “on” after taking my meds. I also take a half-hour walk around 10pm most nights.

[LAJ12345 in reply to bcowart]

He will walk with me and the dog, but as yet can’t get him to do any other active exercises despite buying equipment for him. Cross trainer, punch bag, treadmill weights etc.

[Enidah]

Lots of good feedback on here. When I have that profound discomfort about all I can do is wait for my meds to kick in. I can't even lie in bed but actually do better getting up and walking around. One of my least favorite symptoms. I haven't come up with a favorite yet.

[17Hillview]

Google Akathisia. If the symptoms match what your husband feels, then a levodopa med is the only thing that helped me. In my case Sinimet. So in that case your current Madopar dose may be too low. Just sharing my experience.

[LAJ12345 in reply to 17Hillview]

Thanks. I am always getting these medical terms confused, there are so many of them! I will look at increasing the dose

[17Hillview in reply to LAJ12345]

I don't think thar you have confused anything, sorry for my poor wording if it conveyed this. I was just suggesting that his symptoms sound like what I had....something called Akathisia.

Best of luck and keep us informed please.

[LAJ12345 in reply to 17Hillview]

Oh no, you didn’t confuse me. I just know there is a whole list of words beginning with a that I must write down somewhere and memorise😊. I keep having to look up which one means which symptom.

[AmyLindy in reply to LAJ12345]

I’m very glad that I started my 3rd Sinemet at bedtime - reduces aches and pains and thereby improves sleep and even aids in waking up more mobile.

[Parkie- in reply to 17Hillview]

I just want to mention that akathisia can be induced by Levodopa: (that's what I have)

ncbi.nlm.nih.gov/pmc/articl...

"Non-neuroleptic drugs reported to cause akathisia ...

Others: Methyldopa, LEVODOPA and dopamine agonists..."

[17Hillview in reply to Parkie-]

Thanks for this. I can only speak from my experience, and that is that Sinimet was the only thing that brought relief from my Akathisia. As always, and as I did this time as well, I urge others to Google before trying any suggestions.

Rgds

[LAJ12345 in reply to Parkie-]

Oh, so it might be too much rather than too little? He did become rather worse when he started them. He has also been on fluoxetine and sertraline previously which did also cause the same reaction.

[Parkie- in reply to LAJ12345]

Fluoxetine and sertraline are both listed as causing akathisia (in my link above). Have you ever tried lowering his levodopa?

[Hidden in reply to Parkie-]

Lowering it? Much less than 4 x 50/12.5 per day and he won't be taking any.

[Gioc in reply to Hidden]

You are learning but you still lack the practice, how much ldopa do you take for your PD?

[LAJ12345 in reply to Gioc]

4 x62.5 madopar

[Gioc in reply to LAJ12345]

Laj

I know I was answering Chriswf.

[LAJ12345 in reply to Hidden]

He started yesterday to have an extra one before breakfast for a few days then introduce another extra one later in the day to increase the dose. How would you introduce the extra capsules? Do you take 2 at once or try and spread them further? The original 4 he takes before meals then last thing at night.

I noticed on the pack instructions it says it may make you feel worse before feeling better so maybe it is normal.

[Gioc in reply to LAJ12345]

Laj

I did exactly as described in the Madopar pack istruction table with no changes. Obviously you started from a lower dosage.

[pinoka11]

Hi, I recognize this feeling! I am 3 years underway after my first symptoms and 6 months ago I could not sit or lie in any comfortable position. Tremor in my hand/arm and leg, which made me extremely anxious. Meds did not work 2 years ago, but Madopar did kick in this time. I am now on 150mg 4 times a day and feel so much better. On/off iS there, but is predictable. My life is almost normal now. Hope I can keep this up for a long time... I think your husband should reach the threshold which works for him.

[LAJ12345 in reply to pinoka11]

Thanks for the hope😊

[Parkie-]

Almost one month since your post. Just wondering if your husband is feeling more comfortable? Have you increased or decreased his levodopa carbidopa?

Kind regards

[LAJ12345]

Hi. He is still feeling bad. He tried increasing madopar, but it was worse so back to 4 x62.5. He doesn’t think it helps at all but any more makes him feel much worse.

[Parkie- in reply to LAJ12345]

Hello Laj,

I am so sorry that your husband is going through this. It seems to be the exact same reaction as I have to levodopa carbidopa (akathisia).

Unfortunately, the only thing I found is to reduce dosage. I went from 700 mg a day of regular c/l to now 2 x 100mg of continous release, reducing by 100mg at a time every few months (sometimes weeks) as this symptom returns with c/l continous use. It is by far the worst pd symptom. Very invading.

[LAJ12345 in reply to Parkie-]

I’m not sure how to reduce the madopar as it comes in capsules which can’t be cut.i suppose I can spread them out further And go down to 3 but it’s tricky dodging meals then. He is on the lower dose ones 62.5 ones. I asked the nurs but she said the continuous ones are much too strong and I don’t want to go there!

[Cleo16]

So sorry to hear that. Have you been in touch with the neurologist? What does your husband think of it all? I know from my own experience that some seemingly inoffensive supplements make me feel bad. I know you have said previously that you give your husband quite a few supplements maybe they are reacting with each other?Just a thought.

Take care both of you

[LAJ12345 in reply to Cleo16]

Hi yes I wondered if the madopar was reacting with something so he went off everything else for a few weeks but felt even worse so we are reintroducing them one at a time.