Since my Mum came out of hospital she is noticing that she gets a ‘wearing off’ period before her next medication is due (about and hour before). The consultant doesn't want to up her dosage but I'm not really sure what the next steps are! It would be really good to hear from anyone that's been in a similar situation and anything that has helped them?
At the moment she takes Co-careldopa 25mg/100mg 5 times a day (7am/10am/1pm/4pm/7pm) and then a Co-careldopa 25mg/100mgmodified release at 10pm. She also takes Midodrinefor her blood pressure.
I do think she's fatigued a bit now she has left the hospital, they just leave them sat in a chair all day so I am not sure if its fatigue and low blood pressure?
She's obviously very scared because when she thinks the medication has worn off she can't have a drink or eat her food. I think this then stresses her out and makes it all work!
I'm also not sure if she is getting enough sleep, I have suggested she goes for an afternoon nap.
Any help or suggestions would be much appreciated.
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Purplestar2
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I don't know about your mums other medication but my husband is on the highest dose of Midodrine he can be and he certainly does get a wearing off period. He takes it, waits for for the Midodrine to take effect and then has what he calls " a golden hour or so" and then he can feel things getting worse until he can take the next dose. He likens it to being on a roller coaster .
Hi, thanks so much for getting back to me. I did wonder whether the midodrine needed to be upped, do you know what dose he takes? We have 7.5mg at 7am then 5mg at 10am/1pm/4pm and I wonder whether this should be upped to 7.5mg each time.
I have the very same issue. Except I’m still able to exercise in the early morning. I walk 30 minutes and exercise bike 30 minutes. And do 30 minutes of stretches and balancing exercises. I also take a nap daily and one CL 6 times daily I have tried adding Opicapone and Entacapone which are supposed to lengthen the ON time. Entacapone gave me 15 extra minutes for a while but then stopped working. Opicapone made me feel crazy after 5 days. Still trying to find another solution. I feel a bit better on a strict plant based, oil- free diet with one cup of blueberries daily and 4 cups of dark green leafy veggies . Also it helps to stay very busy and on my feet. Prolonged sitting is a huge problem. I even stand to use computer and pray despite pain from peripheral neuropathy and sciatica. I look goofy. Also nettle tea helps me relax. PS: I tried taking more CL but it did not help.
She hasn't been having her blueberries since she went in and came out of hospital so ill make sure she has these. She also hasn't been having as many green vegetables! Thanks also about the nettle tea tip I will get up some.
Do you think it might be something to so with inflammation? I wonder whether taking turmeric / celery?
Gallowglass, Have you been dx with MSA? Your above description sounds more like PD. It sounds like you are getting a good response from C/L. My husband has MSA and I was dx with PD 13 years ago. Our symptoms and progression have been very different.
They diagnosed MSA largely due to the orthostatic hypotension which we weren't really sure was actually there ahead of her taking co-benedopa? She has always had very low blood pressure.
What makes you think it might be PD rather than MSA? The movement disorder nurses at our trust seem to think that she isn't responding to the C/L as its wearing off and she's already on what they consider to be a high dose?
I'm at such a loss with everything if I am honest! The added complication is that she has very advanced osteoporosis (meaning curved spine posture) and anaggressive leg ulcer which was caused by cellulitis which they couldn't get rid of until they finally removed a varicose vein. That leg doesn't seem to have the best circulation.
She didn't have cold hands/feet (purple) until she started all this medication either.
She's fine walking (now with Zimmer due to hunched posture) and lots of her problems are more due to frailty and muscle mass loss and posture rather than anything else?
I was replying to Gallowglass. I'm sorry for the confusion. It's a difficult diagnosis and the label is probably less important than the progression and symptoms.
My Sue is on a range of medication to manage pain that she gets with her MSA.
Over the 10 years plus we have constantly adjusted her medication to ensure she is comfortable and alert with increasing doses and stronger medication.
All this has been done in conjunction with her neuro consultant and doctors so that we don't overdo it. My tip is to chat openly with the consultant and doctor about the medication and its benefits and changes.
I also still adjust Sue's meds In the background negatively to ensure that we are not over subscribing and that she is using the meds correctly.
Fatigue can be related to low blood pressure. Do you monitor her blood pressure? My Mum used to regularly check my Dad's blood pressure and when he was low or felt 'light' she would raise his legs and give him a glass of water with a good teaspoon of salt in it. This was very effective in raising his blood pressure and for my Dad more effective than midodrine.
I take 5 mg Midodrine every 3 hours with a salt tablet and 1/2 litre water. If I don’t I have that falling off period but never quite recover and become ruined for the remainder of the day.
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