Hi guys. I’ve suffered from this for years. It’s a sort of ‘flu like’ feeling that comes when I’m off. It might be linked somehow to fatigue but I find it quite debilitating. I just wondered if anyone else got this unpleasant feeling? I don’t hear it discussed much on the site.
Do many of you just feel Ill when off? - Cure Parkinson's
Do many of you just feel Ill when off?
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jeeves19
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I don’t feel sick but I get a bad mood feeling and I tremor . Once my meds kick in I feel happy again. It happens most times that I’m off. I’ve always said I would rather have dyskinesia than tremors because I feel happier when I have the dyskinesia. 🥊
That's a new one, LagLag. I guess whatever keeps us in a state of equilibrium is a good thing.
Hello,
Do you mind me asking? When you say you tremor, are your muscles relaxed but shaking or extremely tight and because of that shaking?
It's very important for me to understand where the whole-body shaking I'm experiencing comes from so it could be treated, but my Neurologist and I have not agreed on the terminology and the facts yet.
With me, the time between medications feels more like a withdrawal episode with high BP and PR, and extremely tight muscles. The tightness of muscles causes the tremor and the total loss of voluntary movement. When I take Madopar it gets worse, if this is at all possible. I have to immediately lie down and need somebody to hold my arms and legs to prevent the increase of shaking to almost self-destructive amplitudes and frequencies. I only get better after about 90 minutes when the concentration of levodopa reaches approximately half of it's max value.
It’s completely debilitating and because of it I'm house and bed - bound.
I was wondering if anyone else has a similar experience and how they manage it.
Thank you in advance.
Hello there! Im sorry to hear about what you must go through. I don't know if what I have to say is what might offer the insight you are seeking. I hope that it does. My name is Sheila I am 62 y and was diagnosed at age 48. I take carb/ levo 5x a day. Sometimes I forget a dose and only realize when my body starts to "crash". That's my term for feeling like shit!! (Sorry, no better word for it) By this time all I can do is take my missed dose , lay down with a pillow between my knees and every other part of my body supported to wait until the rx kicks in rendering the ability to function again. It takes 20 minutes or more depending on how late I am in taking my missed dose. I live alone and don't know how I am managing to get by. I have not seen my neurologist in more than 2 years. Missed appointments you know. Basically they help me over the phone when I have issues. I have no help from anyone in anyway really. I have an 87 y mother who needs me a lot. Honestly don't know how I'm doing it but I am. I forget my meds so often it's crazy. That us .y whole existence....crazy!
Thank you for sharing your story. You are doing exceptionally well! You've lived with the disease for 14 years and you've managed to keep your L/C at 5 x tablets a day! Well done.
With me things are not as straightforward, unfortunately.
The medication I'm still on has never worked. I react to it but I have a really bad reaction because of which I was admitted twice to A&E, which wasn't helpful for several reasons.
Thank you again for taking the time to write to me, I do appreciate it.
Good luck to you and do keep in touch.
Best wishes.
I went through something like you have two years ago. I was under stress because of my dad getting sick & I ended up being in bed for 3-4 months because I took too much C/L. I had reactions similar to yours. Private message me if you want to know more. It’s kind of a long story. 🥊
I had a tough time remembering my meds, too. I recently set up the alarm on my cell phone and it works famously! The only hassle is if the phone is in the other room and I have to go turn it off - it's loud and obnoxious, but better than forgetting my meds to the point I am nearly non-functional. All the very best to you!
If you have a an app on Android called "My Therapy" and you can set up reminders for your medication and even track how many you have left. I've got in the habit of only taking my meds as I press the 'confirm' button, as I often used to miss medication or not remember if I've taken it or not!
I get a much milder case of what you get once I begin to crash ( not always good at timing my doses- I’ve started dividing mine up now and taking 50/12.5 Madopar every 2-3 hours instead of 2x 50/12.5 3x daily
I describe it as a writhing movement. I do not have pain with dyskinesia.
Hoping this will help you & others distinguish between the two This is one of the best descriptions I’ve read.
Dyskinesia is the involuntary movement of a body part or the entire body that you can’t control. Dystonia is the involuntary stiffening or contraction of a muscle. It can sometimes be difficult to tell the difference between the two, but dyskinesia more often looks like jerky movements of an arm, leg, or face. By contrast, dystonia is a repetitive pattern of muscle movements that can appear across a much wider range of body parts, including the jaw, eyelids, hands, arms, feet, legs, face, and neck. Both are common symptoms of Parkinson’s and can be related to long-term use of levodopa, though dystonia can also be a symptom of Parkinson’s itself and unrelated to medication use.
Thank you! This is exactly how I would describe it.So, I have never had dyskinesia but I have dystonia which appears when I take my levodopa medication, and it's really bad.
I cannot not take it as I get withdrawal episodes which are equally horrendous. It is a no-win situation. The worst is that my Neurologist doesn't believe me and I'm seriously considering asking him to arrange a hospital admission for a day only so he could hopefully try and understand what is making me so unwell.
Thank you again!
D.
Women respond differently to levodopa. Might be worth flagging this up with your consultant.
healthunlocked.com/cure-par...
Thank you so much for the link!I was not aware of this particular research.
I will try to discuss it with my Neurologist and will let you know of the outcome.
All the best!
It would be great to hear how you get on. I hope there are some solutions for you.
If you describe that you need your C/L medication, you are ok after about the breakdown of half of the medication and in the morning, if you have not yet overdosed you are best functioning, it seems that there is overdosing. Consult your doctor to possibly halve your dose but take it more often, with a smaller interval. Perhaps it works for you. 🍀
yes i found that the wearing feeling make my muscle tighten up. worse than totally off.
I wonder if this is C/L induced dystonia
Is the muscle tightening equally bad everywhere in your body or just in a led/arm/shoulder?I definitely have dystonia due to too much levodopa but I have no explanation for the wearing off period.
I also feel best early in the morning when I'm low on levodopa, and I get worse as the day progresses.
mostly neck and shoulder on the left side which is more severe. Sometimes I feel like dont have Parkinson at all during mid night going to toilet but I have DBS, it is so difficult to understand!
I didn't realise you had DBS, this is a very different situation to mine.Thanks again for your reply.
Even I, having overcome the difficulty of getting out of bed, am in better shape in the morning.
fitter than later in the day
Thank you for your response.Do you have any explanation why you feel better in the morning? I was led to believe that PD patients feel worst in the morning due to the lack of dopamine, and improve when they take their first dose of levodopa.
With me, like I said, it's exactly the opposite - I tolerate the first dose at around 6 am and after that my condition worsens to the extent that I'm bedridden 90 per cent of the day.
I’m not a neurologist Daisies, but it doesn’t sound like PD to me. Our response tends to be ups and downs all through the day? This is called Motor Fluctuations.
Thank you for your comment! I need to talk to you, do you mind if I private message you? I want to send you some calculations which will make it easier to explain what I go through during the day? I think you recently asked a question which was related to what I want to send you.
I think by sleeping our body produces dopamine .
At night I go to bed exhausted since I get up at five in the morning .
If I also wake up at three , I get up and walk without difficulty, with normal commuting.
I take my first dose at 8:00 a.m. and often arrive at that time tired but do not feel as exhausted as at the end of the first dose.
Thank you for the explanation. I can only say that it is all very different to how I am affected by Parkinson's.It's interesting that you feel exhausted at the end of the first dose. What symptoms do you have in between doses? Apologies that I'm asking too many questions, I'm just trying to understand what is going on with me as my Neurologist keeps telling me that he's never seen anything like me, which is never good. At the same time he is certain that what I have is Parkinson's. I'm finding this a bit contradicting...
Lately all the symptoms of Parkinson's have been more pronounced: tremor, excessive fatigue, bradykinesia, sometimes crying fits , difficulty taking the first step. When I am in bed extreme difficulty moving around
Thank you for taking the time to write to me. So sorry that you are having such a difficult time. I think a good Neurologist could help alleviate at least some of our symptoms but for some reason this isn't happening.D.
Thank you, I also wish you to find a solution
Daisies, the biggest problem for me ( and I read for most of us) were the fluctuations that in off , as I have already written, exacerbated all the Parkinson's symptoms. These offs were hours and hours long.
I made a reasoning: if I spread the levodopa to take over the day every three hours from 8:00 a.m. to 8:00 p.m., I reduce the offs.
I tried it and it worked.
So you’re saying that taking them regularly pays dividends? My trouble is that these set times sometimes clashed with a snack etc that I might have had. I always struggle to make them work close to food protein or not. I suppose an observer would say ‘don’t snack then’ but it’s hard when you’re oilut with friends and you sit down in a cafe and everyone orders a cake !
I understand you completely, but between wanting to eat and feeling better, I prefer the latter.
Yes, this is precisely my reasoning too, except that I take my first dose at 5:30 am, I also take a controlled release one during the night. Unfortunately, this doesn't alleviate my problems in the slightest.
If I remember correctly you said you feel better in the morning, I also, just because of that I pull as much as I can and I start taking the first dose at 8 o'clock
Hi, I give my Hwp a half a teaspoon or so of peanut butter when he starts feeling like he has had too much levodopa. It helps calm his movements down. We are trying to decrease his c/l which was increased by his Dr. in June. Just wondering if that might help you a bit.
How interesting! I’ll try that meself
Hello and thank you for the information.I imagine the explanation for the peanut butter's calming effect might be that levodopa's absorption is affected not only by proteins but also fat. More fat = less levodopa absorption and fewer side effects from potential overdose. D.
I did not know that about the fat. It definitely makes sense though. Thank you for that information. I wonder if taking something like protein or fat would help with what you are going though with the Madopar.
I can only eat tiny amount of proteins (salmon) and fat (olives, olive oil or avocado, nuts) and by tiny I mean amount smaller than a tb spoon, otherwise the absorption of levodopa is affected and this makes my life even more difficult. For me, controlling the madopar absorption by eating certain foods will be very difficult. I would prefer taking it on an empty stomach as I then can predict what will happen.Thank you for taking the time to write to me, I do appreciate it.
To add to what I said before, there are variations of CL, that bypass the digestive system so that if your protein sensitive it's not an issue for you any longer. That's my understanding from various PD presentations. So maybe your MDS doctor can figure out something better.
Thank you. Yes, I have a long list of questions for my Neurologist!
Is your neurologist an MDS specialist? If not, it's worth visiting one even if it takes 6 months to get in. There's a measurable difference in care reported using MDS trained versus a regular neurologist. (So some neurologists can be good, but if you're not having success in MDS specialist is definitely worthwhile.)
I'm not sure if we have MDS in the UK. I certainly have never been referred to one. I was given a telephone appointment with a PD nurse in 6 months, and a telephone appointment with my Neurologist in the next 12 months! I will have to see if MDS exist in the private sector.Thanks!
There are now medications that administer the same levsdopa more constantly, instead of the ups and downs. Since you're having such debilitation from the off time and The med isn't useful until it's been in your system a while, maybe your doctor can adjust to some other medication choices.
I feel like that a lot but I thought maybe it’s just me not feeling well 
my husband says he feels nauseous on some days.
Yes my HWP will say I don't feel good. I say please be more specific and he really can't more like general malaise.
I hope you are recovering well!
That's me too. I will say I just don't feel good and my husband will say what's wrong and I can't explain.
Yes. I can telate to this. General weakness, deeper sadness, muscle achiness...
I'm not dealing with it currently. But last year for many months, I would have bouts during the day of just not feeling good. I couldn't put my finger on it because it wasn't anything we have words for that I knew of.
Also my sleep was completely mucked up. I was sleeping during the day and not at night. I was also on an intensive lymphoma med. But I knew that wasn't causing it, maybe contributing, but something with the PD med was doing it. Both causing the sleep disturbance and the on and off unwell feeling. I also thought that the upside down lack of sleep, was a significant contributor.
I just switched doctors, and the new one says I was being double-dosed. With rasagiline and cl at the same time rather than being more careful about adjusting them. I haven't had time to describe the problem to him, he just immediately saw the med combination as causing problems.
Sensation-wise, I didn't feel well but it wasn't immune like I was coming down with a cold. It wasn't fatigue but there was some fatigue around it. I wasn't nauseous, but it crossed my mind. It might have been a little bit of dysautonomia. But I had dysautonomia years ago with CFS and it wasn't quite that. That was my best guess is that it was in the dysautonomia family, and since it's not common, we don't have language for it.
I started getting dyskinesis from the CL. I recognized that, so I stopped that med. It took months to get back under control again.
So I don't know, if this is what you're talking about, but if it is, been there, then distressed about it.
I'm sorry you're feeling whatever this is. I hope it gets better soon!
yes thanks. Within certain parameters obviously!
Just knackered and worn out like I'm walking on the moon
Have you tried Rock Steady Boxing? They can ease you into exercising. It’s strictly for PD. 🥊
Sadly and annoyingly not available in U.K. Debbie
I’m so sorry. What part of UK do you live? I know some of the people at headquarters. I’ll find out if they have any future plans for one. Surely they do. There are over 900 all over the world. I hope you start feeling better soon. I have friends that have recently had DBS and their programming took awhile but it was well worth it! So hang in there! Keep fighting!! 🥊
The.best cure if you can is exercise
I’m really struggling on that at the moment Jeff. 10 minutes on the stationary bike and I’m bushed.
I function better if i do 5 rythm dancing...try some on spotify...you can ease into it jeeves...
I think it's called akthesia
no I don’t mean that Johnny. I definitely feel poorly when unmedicated. It’s almost like I’m inflamed. Inside: generally unwell without any of the coughs or sneezes?
Yes
Yes. I suspect it is a refractory rebound, based on normal depletion of whatever is stimulated having at some point to recharge. Not unlike a sine wave. Sometimes it is called opponent process. Nature of our neural system's design.
Good morning,I have a similar problem with exercise. If I do even a 5 min session on my bike two hours after taking Madopar my whole body shakes.
Initially, my PD nurse attributed it to anxiety. I've noticed that my Neurologist explains everything he doesn't understand with Parkinson's anxiety, this is a great way to transfer the blame onto the patient.
I still don't know what causes this shaking. Before I was diagnosed I had similar but milder shaking in the knees only which was never treated. I wonder if these things are related somehow.
You are very brave to have the operation and perhaps you are asking too much of yourself too soon.
Best wishes,
D.
I wish I could explain that Daisy but I can’t. My trouble is energy levels. I’m just so easily washed out!
my husband used to complain of being fluey regularly before he was diagnosed and for a few years after. He rarely does now unless he is actually sick with a cold.
I put it down to some infection or gut overgrowth as he also had acne and roseacea. Once he came off gluten and sugar and he went through several courses of berberine and allimed garlic extract/ probiotics over about 6 months - year he lost 20kg weight and rosacea and acne and fluey feeling went away.
I think with the additional micronutrients and a strict health diet he is bodily a lot healthier than he used to be.
Well I’ve just decided that I’m going to fast really earnestly now. I’m just so sick of being sick?
Worth a try. Try berberine and allimed too.
Are you sugar and gluten free?
Just started
I have a few definite signals of being off. This usually happens 3 hours after taking CL. First my mouth floods with metallic saliva. Second my peripheral neuropathy in my toes gets much worse with pain and toe curling and a nerve the pulsates from toes up to hip. Third I feel woozy and disconnected from everything. Fourth my jaw slackens and my speech becomes mush mouthed. Then I have to wait until I can have more C/L. Often I lay down or take a nap because I can’t do much. Then I take CL and wait an hour until CL works
sounds quite severe?
Hi, I was describing my PD to someone the other day and I said it's like having flu but all the time. Exercise can help me break it sometimes but I'm always fighting excerice vs fatigue. Too much exercise increases my tremor and I feel wiped the next day, if I have a lazy day I feel flu like and frozen. Meds help with the 'pd flu' feeling a bit, and strangely it goes in the evening. Reading this back, for me at least, it could be a form of pd related depression?
Well it’s hard to say really isn’t it? But I’m glad that it’s not just me. Fasting has got to be a way out of this nightmare I 🤔 think.
Yeah I was doing one or two 24h fasts a week and it does seem to help me; especially with brain fog and feeling stuck. Keeping it up is the challenge for me. However, it seems every time I try something tests me! Including a well meaning colleague leaving an Eton Mess on my desk at work. Pre diagnosis I was Keto for nearly two years and felt great; apart from missing pizza. Diet seems so important, and despite being fairly slim, food is my Achilles heel.
How many years are you’in’ on this nonsense journey we call Parkinson’s?
Coming up for two years diagnosed, nearly 8 years from first symptoms (tremor in hand that progressed to include leg). Long journey, including GP laughing in my face when I suspected PD, finally after physio agreed it seemed neurological, dat scan used to confirm. How about you?
My 8th year. If I were you - he says with the benefit of hindsight - and as you’re no stranger to fasting, do this as often and as intensely as you can stomach. Along with exercise you might just be able to avoid the worst ravages of this truly awful condition.
That sounds like good advice, thank you. I think COVID has accelerated my PD; the lock down more than virus, although I did have it twice. Before COVID I was running, cycling and eating a lot better. Struggling with motivation now. Think I've been waiting for the meds to fix things.
Something of a concern to the Keto fraternity that you were on this for two years before! Not really a great ad for the diet is it?
Impossible to tell really. I already had symptoms and keto seemed to help. The mental clarity was similar to fasting and I felt good, but keto is a lot harder to maintain. My carb consumption escalated a lot after stopping keto. Also stopped smoking before my symptoms and cut out coffee to try and sleep better, both of which turns out are neuro protective! It's a mine field of trying to work out what may have caused or helped pd. Like when I took loads of different supplements after I started having symptoms and I didn't plan or test them individually. I'm trying to be more scientific moving forward. I want to try mannitol but I'm just about to start a new medication (trihexylphenidyl) and I want to see the effects of that first. However, exercise is constantly touted by medical professionals and patients as unequivocally helpful.
And where exactly are you on the Scepeterd Isle? I’m of the opinion that 99% of Parkies start their journey with stress for what it’s worth. Our systems believe we’re at war with either our own bodies or the world and go haywire.
Ps Me: Brum
I so much relate to this, jeeves. I suffer from CPTSD even after years of therapy and i believe this is at the root of my PD. The HOPE method is trying to address some of this but i know little yet to promote it.
Yes! I have had that feeling (the flu) for years. It suddenly got worse after having Covid last month. I started taking Melatonin to sleep better, and that actually made things worse as I couldn’t shake off the Melatonin “hangover.” So I stopped that. I always worry that I blame all my symptoms on Parkinson’s, and it may cause me (or my doctors) to miss something else, like cancer, etc.
I have felt the flu like symptoms (I believe). I feel debilitated when I am off, stiff and aching. I feel like I want to lay down and sleep but I can’t get comfortable. I also get a stiff neck.
God, the neck is fast becoming my biggest pain in the butt. And I’m losing my voice too. What a drag.
You have been on C/L for quite awhile haven’t you? Does the sick feeling have anything to do with levodopa will make you nauseous if you don’t combine it with the right amount of carbidopa?
Hello, the management of this disease is very complex and it is difficult for neurologists and those who live with us to fully understand the life we lead.
When I am in off , sometimes, I have the feeling (and this is not an exaggeration) that life is coming to an end, if I had to flee because of an earthquake, I couldn't! When the dopamine kicks in I am reborn (for about two hours) I stop shaking, the tiredness returns, life begins again
Very true
Does it happen any time of day that you are off? I have been feeling like death warmed over in the am. Wondering if it is "OFF" on the C/L or too much melatonin or something else
Check out 'helicobacter pylori and fatigue"
Yeah , I get so weak, like now I can hardly type.
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