I’m 61. Diagnosed 8 years ago. I take two 25/100 sinamet, one comtan and one amantadine around 8:00 am. About 4 hours latepr I take another two 25/100 sinamet with one amantadine then another two 25/100 about 3 1/2 to 4 hours later my last 25/100 sinamet. I am having a hard time getting dressed before I take my morning medicine. After about an hour I feel good for about 3.5 hours (total) then I take second dose and feel yucky don’t know how to explain maybe nauseous slow moving and feel like I need to lay down and rest. After second dose and rest I feel better but then third dose of 25/100 sinamet and one amantadine I don’t usually feel so good. My right foot seems to not work it drops I guess you could say. I don’t walk well so I can’t go to the store and that feels like the end of my day. I go into my office job mostly sitting from 10-5 Monday thru Friday
Do you guys have any suggestions for me,
in addition I have absolutely no motivation it’s terrible because I used to be like the energizer battery.
Thanks for your time.
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Blake0488
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Discuss with your doctor a possible increase in your dose sizes, with the aim of reducing the daily changes in the symptoms.
As a first step, make sure that you are not blocking the levodopa by eating, within a hour of taking a dose.
Medicating for PD is made difficult because the main drug( levodopa) has a relatively short half life (about 90 minutes). This means, that with each dose, the levoodpa concentration levels in the blood go up and down, causing the patient to go from "off" to "on" to "off" again several times per day.
You may wish to use an app that I've written to graph the concentration of levodopa and equivalent during the day. You enter your drug regimen into a spreadsheet and it estimates the levodopa equivalent value on a minute by minute basis. (Unfortunately, Comtan is not implemented, but you can estimate it by entering the Sinemet as Stalevo.)Sinemet = levodopa + carbidopa
John, I tried the graph just now and it affirmed sunrooms my husband shows after a certain time on medication. I suggest you share this app with another forum—- the Smart Patients Forum. It’s like this, a great way to connect and receive. I think you’ll get Good feedback on your creation.
It’s worth sharing it with as many as you can to offer answers.
Bonjour , j ai été diagnostiqué il y a 5 ans , j ai mis du temps à apprivoiser le traitement. Par exemple le matin je prends le 1er comprimé de stalevo vers 6 ou 7 h en fonction de l heure à laquelle je me réveille, mais pas plus tard sinon je me suis aperçu que ça marchait moins bien dans la journée si le premier est vers 10h , peut être que c est parce que la dopamine est secrètée le matin , mais après ce premier comprimé je redors une bonne heure et demi comme cela il a bien fait effet et je n ai aucun mal à me doucher et m habiller ,bon je suis en retraite , ça aide , mais un jour où je dois me lever à 7h et bien je mets mon réveil à 5h 30 , pour être très bien en levant , c est meilleur pour le moral .Le neurologue m avait dit de prendre mes comprimés à 8h 12h 16h et 20 h , mais alors j etais comme vous trop de fluctuations , je n étais bien que 3 fois 1h30 par 24h .il a accepté que je tâtonne moi même, avec pour seule consignes de ne pas les rapprocher de moins de 2h .après plusieurs mois d essais ce qui me va bien c est 6h 9h 12h et 17h , et la quasi très bien toute la journée, comme si j avais besoin d une dose plus concentrée le matin .Le comtan donne des nausees , j ai vomi plusieurs fois mon petit déjeuner au début, depuis ça va mieux mais c est limite, toujours un peu vaseuse .
Courage, voyez votre neurologue, il y a forcement une solution pour vous
Hello, I was diagnosed 5 years ago, it took me a long time to get to grips with the treatment. For example, in the morning, I take the first stalevo tablet around 6 or 7 a.m. depending on when I wake up, but no later, otherwise I noticed that it worked less well during the day if the first one is around 10 a.m. , maybe it's because dopamine is secreted in the morning, but after this first tablet I slept again for a good hour and a half like that it worked well and I have no trouble showering and getting dressed, well I'm in retirement, it helps, but one day when I have to get up at 7 a.m. and well I set my alarm clock at 5:30 a.m., to be very well when getting up, it's better for my morale. The neurologist told me to take my tablets at 8 a.m. 12 p.m. 4 p.m. and 8 p.m., but then I was like you too many fluctuations, I was only good 3 times 1h30 per 24h. he accepted that I grope myself, with the only instructions not to bring them closer than 2 hours .after several months of testing what suits me well is 6 a.m. 9 a.m. 12 p.m. and 5 p.m., and almost very well all day day, as if I needed a more concentrated dose in the morning. The comtan gives nausea, I vomited my breakfast several times at the beginning, since then it's better but it's limited, still a little muddy.
Courage, see your neurologist, there is sure to be a solution for you
My husbands Orthostatic Hypotension (low blood pressure) is getting worse. How do you suggest to adjust Levdopa? Can you show a sample? Not much help from Doctors🙄
Wish i had an easy answer! The disease also causes it so a double whammy. I stopped tolcopone and reduced agonists and that worked for me. (I was vomiting with low BP)
So you reduced agonists tohow low, and was it difficult? He stopped the beta blocker doing alittle better OH wise but now experiencing High Blood pressure when I check in the morning. So I’m sure during the night too. He sleeps with his head elevated, 30 degrees, maybe he shouldn’t? I almost thought about Parkinsons Meds around the clock since they lower BP, might be a safer option than adding a short term BP med. Anyone else having BP fluctuating issues?
When you say his bp is high in the mornings do you take both lying and standing BP and are they both high? If not then treating the high BP is also lowering the low BP. Are you checking before or after meds? You need a few standing / lying readings to take to doctor. Do you see a cardiologist and if so does he understand about the non motor aspects of pd in particular the autonomic changes in PD ?
Yes, we just saw a cardiologist and he said its OH. Following up with an Echocardiogram next week just to be sure heart is ok. He said no more beta blocker and start with non pharmacological treatment. Water, water, a little more salt in diet. OH is alittle better but I think Supine hypertension is there. Raising head to sleep. This could have been going on awhile, which can cause other problems too. Recently after several fainting spells seems like cognitive issues set in. Slower. After parkinson meds his BP seems to stabilize, but as day goes on it seems to creeps up. Wish we had a Movement Disorder Specialist here to tweak medications. Not much help. They look for what I suggest. I know its complicated for them too.
I get supine hypertension I think but decided its better not to know as nothing can be done for it. I don’t have a movement disorder specialist either :(. My PD nurse told me to eat crisps. Such a good idea lol.
I was thinking tweak the levdopa and use through the night since it seems to cause some of the OH. There are short term BP Meds but still seem risky for OH, if u ask me. you are right nothing we can do. I read a schedule a woman was working on for her Mom:Regular levdopa at 8 am
Extended 11 am
Extended. 5 pm
Regular. 11 pm
Extended 2 am
Just a thought to help with supine HBP? I think I want him off the ropinrole.
The levdopa during the night/sleeping since it seems to lower BP, I think. He stops meds at 9 or 10 pm. Never took it for bedtime because he actually always slept pretty good. Some of the dreams and movement has to raise BP. I read everyones BP raises at night into morning, why most heart attacks happen in the mornings, ugh🥺6 am now and he is laughing/interacting in his sleep.
So ropinirole is an agonist? I did consider he stop using and see what his PD sides look like. But that too will be hard to wean. He is also on a beta blocker prescribed years ago I currently got down to 12.5 mg. But he can run HB at times. Seeing a cardiologist Thursday. He has had several fainting spells the last couple of weeks, but had several years ago too, Dr’s just said syncope and took him off a diuretic he wad also prescribef. omgosh. Never should have been on a beta blocker with PD. You have to to be your own detective. I really think less is better of we can. He is 8 years in, 72 years old. The lupron shots for recent Prostate cancer don’t help, his fatigue is horrible, hope just OH at this point.
My immediate reponse to your post was over dose. Over and under dosing have very similar symptoms. I would be lowering my sinemet amount or stopping comtan which adds to the effect of sinemet. But really you should be reporting to your neuro and getting advice. Can you stop work or cut back hours. It is hard 8 yrs post diagnosis to work full time.
My husband passed out on comtan. Watch the low blood pressure. Husband felt sick lightheaded, we didn’t know he had it. If he stood up fast etc. Just unaware. Could be the meds or Parkinsons itself.
please don’t worry; we’re here for you. We understand what you must be going through.
Suggest to start B1 sustained release. I take around 600 mg but see what dose suits you. I will also be starting a supplement with Citicoline. Will keep you posted if it’s helpful
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