Two part question about really bad "OFF" time.

[manoa]

My wife is experiencing some horrible symptoms, starting with her mouth. Lots of puckering. lip smacking, tongue tapping and clicking from the pallet, and the tongue feels like it is numb and burning on the sides. She often feels like she can't maneuver her mouth, making swallowing very difficult. She considers this one of the worst symptoms she has, because if she gets caught going "OFF", a sinemet tablet is very hard to take. As her "OFF" progresses, she will experience extreme pain in her toes, sit bones, legs etc. She also feels a burning sensation in her right upper chest area and a crushing pain that is more centred around the sternum, making breathing difficult. These symptoms will manifest when she first starts to turn "OFF" and will subside when she takes her dose and turns back "ON." Are these typical non motor symptoms?

She has no motor symptoms and is struggling to get her "OFF" under control. Eating fatty food or protein will always shorten her "ON" time and sometimes she has a dose failure that can persist for hours. We are in a real catch 22. Her body weight is getting critical, so we need to try and eat as much as possible, however sometimes the "OFFS" are so bad we end up missing meals. We are taking 150 mg of sinemet every three hours so spacing meals is very difficult. Some "OFFS" are brief and mild, and some are so bad she can't even stand up.

[park_bear]

This is a situation that calls for medical help. Possibly duodopa pump, or other intervention. What does your neurologist have to say about this?

[manoa in reply to park_bear]

In Canada it is difficult to get a lot of time with the Neuro. We had a visit for an assessment 2 weeks ago (every six months), He determined that she is not that far advanced, as she was "ON" during the visit. When "ON" she does great. No motor symptoms , cognitive issues or coordination problems. We are still waiting to see his report, the report should be sent to her GP. He was considering a patch when he looked at her symptoms, before the visit, but after seeing her in person, he recommended Entacapone, to extend the life of the Levadopa. I am not sure that we have that problem, as I think we are having trouble getting the Levadopa to the brain due to food issues. I have read a lot of your posts and have thought about the over medication issue, however she usually responds positively about 35 minutes after a dose if we catch the symptoms before she gets too far down. We are on an antidepressant, Mirtazapine, and we started a PPI a while back to see if the burning in the chest is due to GERD. The burning hasn't stopped to date, but her GP wants to give it a good test before we stop it. She was only officially diagnosed a little over a year ago and it seems most of her slide down started when she was put on Levadopa.

[park_bear in reply to manoa]

I believe what she is experiencing is known as “wearing off dystonia”. I think the entacapone is a good idea to help mitigate that. It should extend her on time and enable her to reduce the frequency of the levodopa doses.

There are various disease modification ideas that could be tried but getting her on a stable medication regimen that is effective in reducing her symptoms is the first priority.

[manoa in reply to park_bear]

Thankyou PB for giving us an ear

My wife and I have done a lot of research on the inhibitors MAOB and COMT. I agree they would probably help with the "ON" time. My concern is that if the dose is not absorbed because of protein or is sitting in a full stomach and unable to reach the intestine in a timely manor, the dose regime becomes very unpredictable. The Levadopa needs to "get" to the brain so it can help. We do our best to empty the gut before a dose, but it can't be done all the time because the higher calorie foods take longer to digest and the foods that pass through the stomach quickly are usually low in calories. Her weight right now is at (IMHO), a critical level. She started dropping weight when she started on the Levodopa and has lost 30 pounds. We are struggling to keep her above 90.

As for the COMT entacapone, she dreads the thought of another pill every 3 hours to be taken with the Levodopa. I had he sold on Opicapone (not available in Canada) as it is once a day, however we need to do something. More Levo , entacapone or an agonist. Any thoughts on the pros and cons. It would be nice if we had a medical system that could afford us a Neurologist for a day of observation and discussion. I would love to have more than the allotted 30 min visit.

[park_bear in reply to manoa]

She is already taking so much levodopa I’d be reluctant to add more. A dopamine agonist patch might be worth a try:

ykhoa.org/d/topic.htm?path=...

“Off" period dystonia during the day is managed similarly to other forms of the "wearing off" effect (eg, shortening the levodopa dose intervals or adding a dopamine agonist)”

On the other hand:

“Other antiparkinson drugs are much less likely to produce these motor abnormalities, but some, such as the dopamine agonists, may exacerbate them once they have already occurred following treatment with levodopa. “

Personal report: Entacapone has enabled me to reduce my levodopa dosage and may be reducing my own wearing off dystonia.

[manoa in reply to park_bear]

My wife suffered from Irritable Bowel Syndrome years back. She developed it from an undiagnosed allergy to coffee. She basically had diarrhea for two years. She is worried that the Entacapone could give her diarrhea. She had read that it is a high % side effect and sometimes is permanent. Have you had any problem or have you heard of this,

[park_bear in reply to manoa]

Yes, diarrhea is a possible side effect. Had not heard it could be permanent. Has not occurred in my case.

[park_bear in reply to manoa]

I find I continue to be concerned about your situation. Additional thoughts:

>officially diagnosed a little over a year ago and it seems most of her slide down started when she was put on levadopa

She is taking an awful lot of levodopa for so soon after diagnosis. This seems wrong, although I'm not suggesting trying to reduce without something to take its place. Also I need to mention there are severe adverse consequences for quitting levodopa cold turkey. In any case, this is where experienced MD advice would be useful. Your MD is treating the situation like business as usual whereas it really is something of an urgent matter. If there's any way to get additional medical attention that would definitely be in order. Also, as another commenter mentioned, a crushing pain around the sternum may indicate heart issues.

This situation reminds me a bit of my condition 2 years after diagnosis - taking a lot of levodopa and it was not working well. In my case Qigong made a big difference - enabled me to reduce my levodopa by more than half. That story here: healthunlocked.com/cure-par...

[HekateMoon in reply to manoa]

I take Opicapone at night and seems to stretch the on times during the day, Dont know if this is available in your country, though some of my doses fail too. Crushing pain around sternum can be costochondrytis ( if heart issues are excluded). I do some exercices for this that are relieving. I use some feldenkrais method as well as physio. Your GP/ MD is the one that needs to advocate for her medication to be properly regulated. As PB states this sounds like a medical emergency and should not be ignored. Best of luck. Keep us posted.

[manoa in reply to HekateMoon]

Opicapone is not available in Canada. My wife would probably take it if it was, She is a little worried about taking Entacapone with every dose of Sinimet as the diarhea is apparently in up to 20% of patients. She had IBS for over two years and the diarhea was unbearable. She is also struggling with the Protein effect and probably gastric emptying issues that already cause dose failures. Subsequently her weight is now a major concern. Diarhea would be the end of her.

Just wondering how much extra "ON" time do you think you are getting by using the COMT inhibitor

[taxidermy1944 in reply to manoa]

I totally agree with you about the short appointment time with the neurologist. I walk up and down the hallway and he tests reflexes with his rubber hammer, and says I will see you in 12 months. We currently are unable to get Ropinorole here due to some ingredient shortages. Unknown reason and causes. Neurologist advised, when I asked, what happens when I run out- "Just carry on without them." This does not do much to ease my anxiety.

[bradykin]

Hi manoa:

Some things to try:

1. Refrain from eating protein until the last meal of the day (same with larger heavy fatty meals).

2. Use c/l orally disintegrating tablets.

"Place on your tongue and let it dissolve. Water is not needed. Do not swallow it whole. Do not chew, break, or crush it."

drugs.com/cdi/carbidopa-and...

3. In case she has less trouble with drinking, crush her c/l dose and mix it in a cup of water (so she can drink her dose).

[Susan80 in reply to bradykin]

my husband’s doctor is having him chew his C/L. So it can get to his small intestine faster

[Wanderer444 in reply to bradykin]

The use of soda water to dissolve the C/L may help her absorb it faster.

I sometimes have sudden OFF periods and it helps me. I also use Dopa Mucuna to replace some C/L with the benefit of a softer release and seemingly prolonged ON periods.

[NurturalApp]

Protein competes with L-dopa for absorption in some people, as you will know. Have you tried digestive enzymes to make sure the food is being properly digested and the nutrients (esp. B-vitamins, important for neurological symptoms) are being properly absorbed and utilised in the offs? Your wife may need a high level one. I use Enzyme Science products with my clients.

[manoa in reply to NurturalApp]

We have talked about digestive enzymes. Thanks for the response, I will definitely look more into it.

[Jana86]

I too take Entacapone with no diarrhea. But what concerns me most is your description of chest pain in the off periods. I have these ss.me symptoms. My PCP put me on a Halter monitor to track heart function for 24 hours. I also logged what I was doing. Quite obvious my heart goes into afib if I exert myself at all when off and that painful squeeze is the beginning of angina. I thought at first that I had dystonia in my esophagus as it was difficult to both breathe and swallow. I am working with a cardiac specialist in Boston now and am very careful about what I do when off. This is not a symptom that should be ignored.

Does your wife get very thirsty when the dystonia in her face occurs? I find that adding pedialite to the water I drink for pill taking is helpful and reduces this symptom.

[manoa in reply to Jana86]

I took her to the hospital emergency yesterday after reading your reply. It was packed solid. They were treating people in the hallways and even in the waiting area . The wait time was 5 hours to see a doctor. We had a blood test done in the waiting area, then moved to the hallway in the emergency room where they did EKG and then finally she was taken for a chest xray. After about 7 hours a doctor showed up and talked to us in the hallway. Everything checks out and there is nothing they can do. Seems she has an extra heartbeat every so often, but not to be concerned. Easy for him to say, but if you are my wife and experiencing the episodes of distress, it is not possible to not be concerned.

[Jana86 in reply to manoa]

The only way I know of to figure out whether it is esophageal dystonia or a heart issue is to wear a heart monitor through these episodes. If dystonia, it won't show on the monitor. If it is heart related, it will record and a doc can clearly see it. Your primary care doc can arrange for a monitor. I make a trip to the ER every 8 weeks or so, so I am familiar with the ER chaos you describe. I only go to the ER if I can't get the afib to stop...yoga/mindfulness breathing for 10-15 minutes helps most often, or not.

[manoa in reply to Jana86]

Hi Jana86

You also mentioned dystonia in the esophagus. This is one thing my wife has been stuck on. The symptoms she describes to me, sound an awful lot like what is described on the internet research she is doing. I know the internet can be a horrible place to rely on for information, however it can also be an excellent source for information. You need to know what sources you can trust. Is there anyway we can determine (or rule out) whether she has esophageal dystonia.

[Sydney75]

My HWP takes digestive enzymes w lunch and dinner meals i think it helps speed up his digestion. Could you try a more extended release version like Rytary or perhaps as others have mentioned low dose of Neupro patch to smooth out symptoms bypasses digestive system.

[manoa in reply to Sydney75]

Thankyou for the response. I am definitley going to look into digestive enzymes.

[1LittleWillow]

Have you ever tried adding digestive enzymes and HCl with pepsin with her meals to help with digestion? What about probiotic foods to help improve gut flora?

[Hidden]

Are the tablets she is taking yellow? Can you check the inactive ingredients for each medication? Also, is there any dust medication residual in the pill bottle or whenyou split it?

Yellow#10 aluminum lake is an allergen for some. Crospovidone is a tablet filler in many drugs and swells when it is wet. The reaction may be cumulative. Some people have reported asthma symptoms after inhaling the powder residue. Some generics advise against crushing or splitting them. When I took it, it felt like the tablets were sticking in my throat. I found that all three of my meds had it and I was getting at least twice the dose of the filler. There are so many variables . Good luck to you both.