”OFF” time is turning into a nightmare - does anyone else have or experience this? If so, what is your neurologist or MDS suggesting?

[Dash7412]

Hello, I’m experiencing awful symptoms that are often intense and disturbing. It’s as if someone has flipped a switch, and I’m suddenly having unregulated breathing, heat waves in my entire body that feel like I am in an oven, dry as dust nasal passages, extreme weakness and fatigue which makes me feel like I can’t lift my head, and just an all over feeling of discomfort. If anyone has dealt with this, I would appreciate your feedback, as my MDS is saying that my only option is to take more of my Rytary (48.75/195 mg - 2 capsules - currently 5x/day - so that would put me at taking it 6x/day, which I think is too much)

Thanks in advance for your feedback.

[CaseyInsights]

This is a link to a similar inquiry here on Health Unlocked: Off times and hyperventilating

Hope you find the suggestions and resources of use

healthunlocked.com/cure-par...

[park_bear]

If this is happening in the morning it may be due to under medication. However, if it is happening in the afternoon or evening it may be due to stacking - overdose due to overlapping of time release medication doses. The bold line in the attached image shows duration and levels of rytary in your bloodstream. As you can see, after 8 hours, the level is still about half of the peak.

If it is a stacking problem, the solution is to take rytary less frequently, and increase these doses if necessary.

Many MDs do not recognize that over medication can be a serious problem: healthunlocked.com/cure-par...

Image credit: pmc.ncbi.nlm.nih.gov/articl...

Rytary in your bloodstream

[LAJ12345 in reply to park_bear]

This post should be displayed on HU as a must read post for any newly medicated patient. It seems so common on here I’m surprised most doctors seem oblivious and just tell people they are progressing.

it’s took months of distress for us to work it out and the answer from the specialist and pd nurse? Take more, you are under medicated! They refused to listen despite his improvement coming off their dose .

[Jmellano]

I have experienced each of your symptoms (except your breathing issue) in my down time also extreme fatigue, ,bradykinesia, weakness are with me always.I believe I m c/l resistant. I had been on rytary for a couple of years until Crexont came out. Rytary helped me tremendously as I was starting to to have more symptom intensity. Apparently time release works better for me.

Same equivalent Crexont ,I take now, only have to take meds 3x per day vs. 5x per day with rytary. My MDS thinks my pd symptoms could be aggravated by depression, sleep issues or blood pressure issues. We are attacking each to see if the issue is 1 of the 3 . He said the results of his clinical tests don’t map to the way I feel. I had sleep study, which showed no sleep issues , Dysautonomia testing at nyu Langone in nyc. It was noted some of my BP related baroreceptors were not functioning. This can be PD caused or caused by radiation to my head/neck in 2007(if that is the reason, not much can be done. I am about halfway through TMS therapy (I will create a post about my TMS experience when I will be done early 2025. Also seeing mental health professional 1x per week

[Nitro53 in reply to Jmellano]

Hi, what exactly is Crexont and how does it work? Do you feel the switch was worth it? Thanks

[Jmellano in reply to Nitro53]

i believe crexont is an enhanced rytary, definetely worth switch for me as the number of times i had to take meds went from 5x per day to 3x per day, note that thae capsules are not a one to one correspondence and MDS had to convert dosage values to get same amount of c/l as Rytary

[Jess123dog in reply to Jmellano]

Hi Jmellano, do you have low blood pressure problems or high. Interested in your comment about radiation to head/neck as I had that in 2012.

[Jmellano in reply to Jess123dog]

Low, yes, unfortunately there are no studies on long term impact of radiation on body. I have some articles on what has been done, lmk if u want me to send to u

[Jess123dog in reply to Jmellano]

Thanks Jmellano, I won't for now, a bit overwhelmed already with the the whole Parkinsons thing, it's like a full time job. Revisting the cancer episode of my life scares the life out of me 😬

[Jmellano in reply to Jess123dog]

Ok, lmk. Indeed, pd is a full time job, I find myself filling up my weekly calendar with p/t, speech therapy, mental health therapy appointments and various other pd related tasks and exercise when I have motivation ..jeez

[Nitro53]

Hi, I have been having this problem for some time. It helped when they added Entacapone but now that is starting not to work as well. When my off time comes it’s usually just before my next dose but it can always come anytime. I have extreme fatigue and weakness along with a feeling of brain fatigue. I have to stop everything. I currently take c/l 200mg ir with Entacapone 4x a day and 200mg c/l er with Entacapone before bed. I was talking with my Doctor about trying Rytary. As someone who takes it do you think it’s worth the switch. I will have to change my Rx plan as my current plan won’t cover it. Thanks

[Dash7412 in reply to Nitro53]

I have taken Rytary since I was diagnosed in 2016, and it has worked well until the beginning of this year and I started having level drops. My digestive system sometimes gets sluggish and I became more watchful and things improved. Then came the awful lower back pain and that has been a huge issue. Now my back pain has subsided, but I’m struggling with the sudden wearing off. I’m hoping that if I am more watchful I can get it figured out.

Thanks for your input and good luck if you try Rytary

[Lorraine33]

I’m not a doctor but it sounds like you maybe having an anxiety attack.

[Nitro53 in reply to Lorraine33]

I know anxiety! That’s not anxiety.

[Joanne_Joyce]

Sorry about your miserable off times . Before I started replacing two of my Sinamet with Mucuna Pruriens I was absolutely miserable before the Sinamet kicked in after about an hour. I couldn't do anything. Now when I take Mucuna Pruriens I only feel mild discomfort for about 30 minutes and I can continue doing whatever I was doing. Even now when I take Sinamet in late afternoon and before bedtime I have mild off times.

[Jess123dog in reply to Joanne_Joyce]

Can I ask what brand of mucuna you are using Joanne, and how much is the dosage?

[LAJ12345]

that sounds a bit like the overmedication that my husband had on the ER madopar. He now uses the IR tablets 50/12.5 and takes then at 8am,11,2,5,8 with 1/2 doses at 9.30 and 3.30

And a NOW dopa mucuna capsule + 1/3 entacapone at 8, 11 and 2.

He is doing very well at the moment.

His problem is he uses it up very fast then has an anxiety reaction to the biproducts so less and often is much better for him.

[Jeagar815]

I am not a fan of Rytary. Have you tried extended release Sinimet? It might be worth mentioning to your neurologist. Rytary was a complete nightmare for me.

[gginto]

Do you exercise daily like fast walking? I believe it's as important as meds.

If I don't exercise I feel off - more tremors, anxiety, sense of discomfort throughout my whole body, weakness. etc... I also take lots of evidence based supplements- also I go to a Traditional Chinese Medicine therapist and get acupuncture.. I believe a combination of all these things lessons the dependancy on drugs..

Don't eat too many carbs, drink lots of pure water and green tea. I also take frozen organic wheatgrass every morning,, you can email me I'll give u more info.