1. < Parkinson's Disease
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Started Carbidopa/Levodopa Today

Posted by radioactivems @radioactivems, Apr 16 4:30pm

I'm excited. I'm praying for relief i don't have to work until the weekend, so I'm not going to be doing anything for a couple of days

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

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jtes | @jtes | Apr 28 5:50am
In reply to @mimifont "I just found this group. My husband has been having a lot of Parkinson's symptoms, though..." + (show)
Profile picture for mimifont @mimifont

I just found this group. My husband has been having a lot of Parkinson's symptoms, though he has not been formally diagnosed with Parkinson's. He's had a lot of tests, and they have sent his records and blood samples to Mayo clinic. No one so far has decided what it is. However, he is on carbidopa/levodopa and he seems to do better when he's on it, so he is continuing. We have been waiting to get into a new neurologist for months now. His appointment was supposed to have been last week, but his neurologist decided to leave that practice, and they are trying to get him in with someone else. I decided to try and find out as much as possible about PD - since, even if that's not what he has, he shares a lot of the same problems with those who do. His mobility is getting worse and worse, and I'm really afraid of what is coming. He was given exercises to do every morning, but I suspect that he should be doing more. It sounds like a lot of you who have had diagnoses for quite awhile are doing better than he is. Anyhow, just wanted to say, "Hi."

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My husband was diagnosed 5 years ago. The best things for him in addition to his meds are regular exercise, Parkinson’s boxing (where in addition to the exercise he meets others dealing with the same issues), occasional PT with a Parkinsons specialist and a monthly massage. It’s a tough diagnosis but there is help out there. I wish you both well.

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adrienne625 | @adrienne625 | Apr 30 8:29am
In reply to @katrinafunst47 "How did you tolerate the levodopa-carbodopa blend?" + (show)
Profile picture for katrinafunst47 @katrinafunst47

How did you tolerate the levodopa-carbodopa blend?

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I was diagnosed 2 months ago and have been on Carbidopa-Levodopa since then. My morning dose can make me queasy. Yesterday, my neurologist said it was fine to have a few crackers before taking the pills. That seems to help.

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cbsgoldi | @cbsgoldi | Apr 30 9:47pm
In reply to @mimifont "I just found this group. My husband has been having a lot of Parkinson's symptoms, though..." + (show)
Profile picture for mimifont @mimifont

I just found this group. My husband has been having a lot of Parkinson's symptoms, though he has not been formally diagnosed with Parkinson's. He's had a lot of tests, and they have sent his records and blood samples to Mayo clinic. No one so far has decided what it is. However, he is on carbidopa/levodopa and he seems to do better when he's on it, so he is continuing. We have been waiting to get into a new neurologist for months now. His appointment was supposed to have been last week, but his neurologist decided to leave that practice, and they are trying to get him in with someone else. I decided to try and find out as much as possible about PD - since, even if that's not what he has, he shares a lot of the same problems with those who do. His mobility is getting worse and worse, and I'm really afraid of what is coming. He was given exercises to do every morning, but I suspect that he should be doing more. It sounds like a lot of you who have had diagnoses for quite awhile are doing better than he is. Anyhow, just wanted to say, "Hi."

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Hi. My Mom was diagnosed Aug 2023 and boy did we have a horrible time getting diagnosed. I have honestly cried just about everyday since. She lives with me and I see her declining daily. Not to be negative but this disease is dreaded. I’m so sorry. Mom has really declined significantly in these last couple years. I just got her into rocksteady boxing for PD patients and she hates it. The carbo/leva makes her sleepy and she takes it 4 times per day and sleeps a lot now. Her dreams are so vivid and often very scary as she screams and cries. I mean like horrific screams. She has fallen so many times. Broken back, fractured hip and hit her head so many times. It breaks my heart into to witness this. But I know God has a plan and doesn’t make mistakes.

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radioactivems | @radioactivems | May 1 7:17am
In reply to @cbsgoldi "Hi. My Mom was diagnosed Aug 2023 and boy did we have a horrible time getting..." + (show)
Profile picture for cbsgoldi @cbsgoldi

Hi. My Mom was diagnosed Aug 2023 and boy did we have a horrible time getting diagnosed. I have honestly cried just about everyday since. She lives with me and I see her declining daily. Not to be negative but this disease is dreaded. I’m so sorry. Mom has really declined significantly in these last couple years. I just got her into rocksteady boxing for PD patients and she hates it. The carbo/leva makes her sleepy and she takes it 4 times per day and sleeps a lot now. Her dreams are so vivid and often very scary as she screams and cries. I mean like horrific screams. She has fallen so many times. Broken back, fractured hip and hit her head so many times. It breaks my heart into to witness this. But I know God has a plan and doesn’t make mistakes.

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I'm sorry your mom is going through this. My mom died from PD and it was tough to watch her decline. I'll be praying for both of you.

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Teresa, Volunteer Mentor | @hopeful33250 | May 3 12:03pm
In reply to @katrinafunst47 "How did you tolerate the levodopa-carbodopa blend?" + (show)
Profile picture for katrinafunst47 @katrinafunst47

How did you tolerate the levodopa-carbodopa blend?

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You were asking how PD patients tolerate the levodopa-carbidopa, @katrinafunst47. Speaking from my own experience, my neurologist titrated the medication for the first month. I began by taking 1/2 tablet every day for one week. Then continued to increase it by a 1/2 each week until I reached 3 tablets a day. When I was into the second week (1/2 tab twice a day) I was beginning to notice a difference in my symptoms. I had less balance and gait problems. So I increased it by another 1/2 tab the second week.

My neurologist also said to take it with meals to avoid stomach upset. I see that one member mentioned eating a few crackers with the med to help with nausea.

I look forward to hearing from you and learning how you are doing. Will you post again about your adjustment to the medication?

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adrienne625 | @adrienne625 | May 3 2:00pm

Your mom is so lucky to have you 🥰

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radioactivems | @radioactivems | May 3 8:43pm

Thanks. She passed away 7 years ago Monday.

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Moderator
Lisa Lucier, Moderator | @lisalucier | May 28 1:26pm
In reply to @jaybee51 "Hi, I was recently diagnosed with Parkinson’s and was prescribed Carbodopa/Levidopa. The day after taking it,..." + (show)
Profile picture for jaybee51 @jaybee51

Hi, I was recently diagnosed with Parkinson’s and was prescribed Carbodopa/Levidopa. The day after taking it, I began experiencing a skin rash and hives. After several days, it had not subsided so I was referred to a pharmacist who specializes in drug reactions and interactions. After reviewing my symptoms and all my medications, he said he thought the rash and hives were unrelated to my medications (even though rash and hives are listed as possible side effects of Carbodopa/Levadopa) and that it was just urticaria so he prescribed an antihistamine (Xyzal).I have been taking it for 3 days and it has not helped at all. Hives are spreading and itch so badly I can hardly sleep and is quite irritating all day.Has anyone else experienced this and if so, how did you find relief? Thanks for your thoughts. Jim

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Hi, @jaybee51 - just wondering what happened with the rash and hives you were experiencing? Are you still taking Carbodopa/Levidopa?

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Moderator
Lisa Lucier, Moderator | @lisalucier | May 28 1:45pm
In reply to @bromy "I have been taking carob/levo for over a year and take it three times a day...." + (show)
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I have been taking carob/levo for over a year and take it three times a day. As the meds start to “sunset” and the new ones start to take effect, in addition for my tremor starting up , I have a dull sensation in my right ear, a headache and start to yawn ..sometimes for as long as 20 min. Then I often cough for a few minutes. This is very unpleasant as well as exhausting. What is causing this? Is it normal? I always drink plenty of water and try to just keep moving or doing something.

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How are things going with your Parkinson's medications, @bromy?

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angels81 | @angels81 | May 31 11:06am

Wife recently diagnosed with Parkinson. Prescribed Carbidopa/Levodopa and took it only 8days before experiencing dizziness, lightheadedness, brain fog etc. Neurologist recommended discontinuing meds. Off medication 5 weeks now but still with side effects. Scheduled for MRI of ears in 1 week. Exploring methods to manage symptoms including non-invasive vagus nerve stimulation, "Relief Band" worn on wrist for motion sickness, accupuncture, physical therapy etc. Any recommendations or guidance concerning this would be much appreciated.

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