I'm very worried. At the end of January they changed me from Stalene 125 ( 4 a day) to Sinemet 250 ( 3 a day, whole, half, whole other half) and Opicapona. With the Stalene I was losing strength and endurance, and I started to lose my balance, of which I also blame the Ryvotril and Trazadona. And the dystonia in my foot is driving me crazy, it is end of dose dystonia, and with nothing that lowers my dopamine level I already have my foot writhing in pain. I can't sit up, I have to walk, and my body is tensing up. It's a horrible hour or hour and a half, it comes to me every day at 8.30 pm and that's when I disconnect. On other days, depending on breakfast and lunch, I go offline, and my foot is already bothering me, there are days when I go offline three times. This is taking away my social life.
The neurologist says it's due to lack of treatment. I know that. And I'm on levodopa. Last week he upped me to 4 Sinemet out of 250. Now I'm noticing that Sinemet lasts less time, which causes the damn dystonia to start. It also continues to decrease strength, balance and endurance. Tomorrow I have to call him and I know what he's going to say: increase Sinemet.
Diagnosed in 2012, aged 52. Until December 2018 I only took 2 Stalevo 100mg per day, one at 8.00 am and one at 14.20, the rest of the day I took Mucuna Pruriens, ashwagandha, Rhodiola, reishi, eleutherococcus and other supplements. I drove my BMW motorcycle, I rode 10 to 15 km daily, I could go out for lunch or dinner with my wonderful wife, in a state of disconnection, without medication. But one day I noticed that the 8.00 am Estalevo was making me less effective and instead of adding some mucuna, I decided to go and tell my neurologist to put it on. My surprise was that the neurologist was no longer seeing me. Now her husband was, I still decided to go. He took me to Stalevo 125, 4 a day, he also sent me a dopamine agonist, ropinerole. And to stop taking nonsense. I listened to him and the first ropinerole he took (at 5 months) made me faint 3 times in 15 minutes. Since then I've been doing badly, and it seems to be progressing very fast day by day.
I don't know what to do, but I can't go on like this. How far will Sinemet go?
I don't feel good about thiamine either, my kidneys hurt. Dr Constantini sent me 3 grams and soon after that I got sick.
I'm going back to Mucuna and I'm going to stop taking my medication. And I'll find another neurologist. This must be a solution. I feel like a dog that has to be taken for a walk every day, not tied up but holding on to my arm.
Someone can help me. Life doesn't make any sense to me anymore. But God exists.
I hate to inform you that your "PD honeymoon” is probably over…
I don’t recommend that you go off your meds (e.g., carbadopa/levodopa (c/l) with opacapone)…
Instead, you need to experiment with different c/l dose amounts and inter-dose intervals, until you find what works for you… This is a tedious trial and error process…
First find the “lowest single c/l dose” that gives you good relief from PD symptoms for several hours (e.g., 2 - 4).
Next determine the proper inter-dose interval (i.e., the amount of time between successsive doses) that provides sufficient overlap between the “lowest single c/l doses” such that you reliably don’t go off in between doses…
Note, you should do this while:
+ severely minimizing the amount of protein you eat < 5 grams per dosing interval, and eat your day’s worth of protein 30-60 minutes after your last dose (of the day’s consecutive doses)...
+ avoiding large meals that are high in fiber and/or high in fats (before your last dose of the day’s consecutive doses…
+ keep your bowels moving (e.g. take Miralax as needed to achieve this)
+ If you’re feeling ambitious/curious, then during the trial and error period, do not eat ANYTHING until after your last consecutive dose of the day… this will demonstrate to you how what you eat can interfere with the medications (i.e., you will see the effect of the meds without any food to interfere)… for me, this was the thing that signaled the end of the honeymoon period (i.e., what I ate had a serious impact on the effectiveness of the meds)...
Other notes:
+ It is my experience that the first dose of the day needs to be higher than those that follow.
+ If you space you doses too closely, then your blood levodopa levels will increase over the course of the day, and this could result in peak dose dyskinesias…
+ If you space the doses too far apart, your roughs will be below your therapeutic threshold (and you will go off)...
Note it currently doesn’t have support for opacapone…, but it at least can be useful to get a general idea of how each dose effects your blood’s levodopa level...
I dont know what has been lost in translation but you sound like you are in a mess. The first three drugs wont help your movement. One is antifungal and the other two for your mood (antidepressant).
It could be Dangerous to stop any medication abruptly but you certainly need help to organise what you should take. You sound like you are over dosing.
Can you get a second opinion? You will have a national Parkinson organisation and I would contact them too.
You are 100% correct. That was happened to my mom as well. Beside dystonia she was developed anxiety as well. She toke Sinemet 1-1/2 times as well. I try anything and everything to improve her condition to take her out of dystonia, including thiamine 500mg 3 times dally, but she got sick from it like you are.. So until I found the solution. Here what improved her dystonia and Anxiety. I cut the dose of Sinemet for her period! Now when she wake up in the morning she take only 1 Sinemet 100/25 30 minutes before eating anything, then after 30 minutes with food I'm giving her vitamins. I changed the 500mg thiamine for Allithiamine 50mg B1, and that is not bothering her at all. So after 30 minutes from the 1 Sinemet with food I'm giving her 1 Allithiamine, 2; 200mg=400mg Magnesium bis glycinate, 1; 1000mg vitamin c, 1; 400mg Riboflavin B2, and 1 , from Bell products its called Inflammexx it is a anti-inflammatory vitamin protect cells from free radical damage and helps address pain and inflammation at the cellular level. Because before dystonia she was hardly could of move and Parkinson parts of the inflammation in the body and joints. My mom after this method of regular taking this for two months she can easier walk, have a good sleep now, dystonia and Anxiety is disappeared as well even her left frozen shoulder is improved big time so now she can move and her energy increased. Before just push her one finger she would fall, out of balance totally and very weak! For her bowel movement I give her Dulcolax but not always, because with better movement now she can go quiet regular to washroom. Her hands where both shake as well, but big improvement too.. Like I said I take her off almost completely from Sinemet, When her neurologist seen her couldn't believe either. But it toke me over a 1,5 year to try everything you name it, I have a complete vitamin store in my house you name it, I have it.. to try figure it out what's works and what's not to get her out of this mess. She is 76 and over 10 years ago diagnosed. Hope this helps, good luck to you and god bless.
Cuanto Sinemet estaba tomando? y como lo reduciste? De golpe no es bueno reducirlo. La Distonia era dolorosa? La mía me da al final de dosis, y cada día es peor, me hace retorcerme, es horrible. Me tengo que tomar un Orfidal, ( lorazepam) y aún así dura una hora y media. También me tomo una valeriana y una pasiflora. Aparte de que he perdido el equilibrio y ando sujetandome en las paredes. La alitiamina no le da dolor de riñón? Me da mucha alegría ver como cuidas de tu madre. Ere único.
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