Husband saw new Movement Disorder Special... - Cure Parkinson's

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Husband saw new Movement Disorder Specialist who increased his Sinemet which has helped his walking.

50 Replies

Only problem is from time he goes to bed and gets up in the morning he has had no meds and then can't walk again until he takes his morning meds. Anyone else experiencing this problem? Hate waking him up in the middle of the night to take the medicine. It takes almost an hour for the Sinemet to kick in. We see dr. again in 6 weeks.

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50 Replies
Dennis profile image
Dennis

I have a difficult time walking almost anytime-- morning can hardly get out of bed...during day slow walking with pain...about 5 pm it gets worse until I

cannot hardly move after dinner. It feels as if my legs are weak and cannot hold up the body along with pain.

Hope your formula continues to work for you and improve as well.

~~~Dennis

in reply to Dennis

I'm so sorry you are having so many problems - are you on any meds to help? I would keep trying different doctors until you find someone who can help you. My husband is exactly like you and I am now on my 5th doctor trying to get him help. Thankfully, the new meds are starting to help him some although pain and slowness is still there as well as cognitive issues. Don't know which is worse, dementia or not being able to walk.

granny2012 profile image
granny2012

My doctor prescribed Sinemet along with my Lepadova/Capodova and the medication worked beautifully. Tremors are almost gone and steadiesr returning.

Granny2012

in reply to granny2012

That is wonderful that it is working for you. What dosage are you on? My husband is on a low dose right now and I can definitely tell the difference. The doctor will probably increase it some when he goes back in 6 weeks. He takes his meds before bedtime but when he gets up in the morning he is in a lot of pain until the meds kick in again. Wish there was something I could do about that but am thankful something is finally starting to help him. One thing that is happening though is he talks to people when he is napping and when he awakes he thinks he needs to go take care of something. That is new so don't know if it is the meds or not.

Pete-1 profile image
Pete-1 in reply to granny2012

That is a curious thing, Sinemet is Levodopa and Carbidopa together?????

PatV profile image
PatV in reply to Pete-1

my question too. Does doc know he's on 2 of the same meds?

michaela13 profile image
michaela13 in reply to Pete-1

I_was the same thing. Sinimet is cab/ leva.

wifeofparky profile image
wifeofparky in reply to granny2012

I'm confused. Sinemet is Levadopa/Carbadopa. Are you on different strengths?

MagicMax profile image
MagicMax in reply to granny2012

Levadopa/carbadopa is Sinemet. Sinemet was a brand name for it.

M1tz1 profile image
M1tz1 in reply to granny2012

So happy for you about the Sinemet. It doesn't help my husband at all, so the Dr has just changed him to Madopar. Hoping it's more successful.

granny2012 profile image
granny2012

Sinemet is 200 mg and Lepadova/Carpadove is 25-100 ng. I have pain in my hip when I first wake up abd sometimes during the day, but I don't pain meds for that. I suggest you bring up talking/napping/need to take care of something situation with the doctor.

in reply to granny2012

My husband takes 1 1/2 tablets of 25mg/100mg of the Carbidopa-Levodopa 3 times a day and it has definitely helped some. I thought Sinemet was the same thing as the Carbidopa/Levodopa - what is the difference? I will definitely speak to doctor about other issues although the doctor asked if he was napping alot like he knew he probably was so it must be a side affect for him.

Pete-1 profile image
Pete-1 in reply to

I already made the same commented on this one. Yes Sinemet is Levodopa and Carbidopa together - very curious?

wifeofparky profile image
wifeofparky in reply to granny2012

You are on two different strengths of the same drug.

Pete-1 profile image
Pete-1 in reply to wifeofparky

Or possibly the same strengths but therefore double the dose ?

in reply to granny2012

I take Stalevo (100mg) 4 times daily. I need just a small amount, so my neurologist prescribed 1/2 Carb/Levo (100mg) twice daily. That "extra kick" really helps me. Anymore than that cause PD symptoms.

If I remember correctly, Sinemet is a combination of carbidopa and levodopa, that is suppose to be longer lasting.

granny2012 profile image
granny2012 in reply to

That is correct about the Sinemet. Currently my doctor is prescribing both.

Odette profile image
Odette

Yes, every morning I have to waite an hour and more to be able to walk and do my morning things., go to the shower etc.I´m very slow and stiff, so it is hard in the mornings and also in the evenings whwn the medication doesn´t work. It is often very hard to believe that I could get to work from that situation, but always the miracle have happened. But I feel as I had had a marathon when I finally get to work.

granny2012 profile image
granny2012

Not encoutering the prollems list here.

Granny2012

granny2012 profile image
granny2012

I take both 6x times a day.

Other medication I take 3x a day. Dosage may have to be changed though. Will be calling my doctor this week.

Granny2012

lmbanni profile image
lmbanni

Raven, my husband has the same problems. Wow it is exactly the same! He is so sore and in pain and stiff and cannot walk well in the mornings. The doctor did give him a different version of the Sinemet. It is called Sinemet ER. The ER stands for extended release. He took it only for the night time dose. Being extended release it was to last during the night and help him feel looser and be able to walk better in the mornings. It worked a little for him but not enough. It may work for your husband though. You might want to try and ask the doctor about it for him. Good luck and God Bless you both! :-)

Mary

Pete-1 profile image
Pete-1 in reply to lmbanni

Hello Imbanni,

I was just wondering, is there any possibility that a stronger dose may do the trick?

Pete

lmbanni profile image
lmbanni in reply to Pete-1

I asked him the doctor Pete-1 and he doesn't want to give him a stronger dose. The doctor beleives he has Leo at a high dose now which he calls the limit of medication. I really don't know if that is correct though. I read some of the doses everyone else is on and it seems to me that it could be increased too. Leo is not a small man. He weighs about 210. So I don't believe it is due to his size. He is 5'11".

PatV profile image
PatV in reply to lmbanni

Yes I'm on both sinemet and sinemet time release. The latter gives me a lot of dyskinesia when it kicks in.

PatV profile image
PatV in reply to PatV

supposedly it should smooth out the wearing out but doesn't. I just take my main med more often.

cabbagecottage profile image
cabbagecottage in reply to PatV

Do you take the sinemet as well as the sinemet Cr at the same time at night . do you take Cr during the day . my husband takes three sinemet 125 daytime and I x 250 cr at night . I asked if he could take the CR in the day but nurse told they do not Reccommend taking the CR during daytime use

I think the morning getting out of bed is the worst time for most with PD .

I do notice once moving, (all be it as if I have Rigormortice,) I usually make a joke of it. After an hour of taking my medication, I do feel better till lunchtime. when I go downhill again, and the medication works less efficently until evening when I stiffen up once more.

I am about to try some new Patches and will post info on them and results.

If they work well I may save them on removal and make a Patchwork quilt

lmbanni profile image
lmbanni in reply to

Too funny oldtyke!!! A patch work quilt of the patches!!! LOL!! :-D

cabbagecottage profile image
cabbagecottage

will be interested in knowing what the different patch is for . My husband has Rotiotine . . He also takes Sinemt controlled release and also A 10 mg low dose Amitriptyline when he goes to bed these help him sleep better but they usually last until 5.6 am . The Amitriptyline can make you a little slower when you wake but usually gets better once you become accustomed to it .

wifeofparky profile image
wifeofparky

Our movement disorder specialist suggested taking one 25/100 levadopa/carbadopa during the night when he gets up to the bathroom.

in reply to wifeofparky

I'll have to ask the specialist about doing that also or maybe using the extended release form. Thanks.

soup profile image
soup

Do you have a soluble form of Laevadopa? This should get into the system more quickly. Also, Some people have a slow release medications to tide them over to the first morning dose. It goes in/on at night.

Ask your specialist about these.

bunngalo profile image
bunngalo

my mother takes a time release sinemet at 10:30 which carries her until 4:30AM

PecanPie profile image
PecanPie

I have read that the Carbo/Levodopa combo is to reduce side effects.

Pete-1 profile image
Pete-1 in reply to PecanPie

If Levodopa is taken on its own then much of it is absorbed from the blood stream into body tissue instead of the brain. This means a much larger dose is needed to have a useful effect on the brain.. Some people find Levodopa makes them feel nauseous and the bigger dose is especially likely to do so. In Sinemet and Madopar the other component (Carbidopa or Benseraside) is not absorbed into brain tissue and keeps the Levodopa in the blood stream until the brain is reached.

M1tz1 profile image
M1tz1 in reply to Pete-1

That's useful to know. I wonder why both drugs send my husband deeply asleep. Any ideas on how to overcome that problem?

MagicMax profile image
MagicMax

Sinemet (Carbadopa/Levadopa) takes about an hour to kick-in, and lasts about 3 to 4 hours. Most people keep their morning dose on the night stand with a bottle of water so they can take their dose as soon as they wake up. Note: this only works for about 6 years. Taking less and exercising extends it's useful life. It is the only true med that works well with PD.

in reply to MagicMax

I have also found the taking less and exercising is very helpful.

kkamegranny profile image
kkamegranny

My dr just changed my 50/200 Sinimet ER from twice a day to taking the ER at 9A & 9P and thenSinamet 25/100 at 1PM and 5PM.....Plus 300 mg Gabapentin at 9A-3P and 9P....Hopefully this will help. My main tremor problem that we can't seem to relieve is in my voice. Doing the LSVT Voice Therapy program and I'm seeing "some" difference but hoping the med increase will help even more. Embarrassed to speak in front of people I don't know well because of my voice.

in reply to kkamegranny

My husband's voice is tremoring and very low but speech therapy hasn't helped. His dementia has gotten worse since his meds were increased a few days ago but don't know if they are related. I use to be able to write on a dry erase board and he could read it but today he is way out in space and doesn't understand a thing I say or write. Boy, do I need patience today!

kkamegranny profile image
kkamegranny

I'm so sorry! I am only 59 and it scares me about what is ahead. I was diagnosed in Dec 2011 but I've ignored the symptoms for years. Have had the voice tremors for at least 6 years and didn't realize how softly I was speaking also. The program makes me feel like I'm screaming but everyone tells me I now speak at a normal level! Taking the Gabapentin makes me VERY tired but I don't seem to have issues with the Sinimet.........I just keep taking it one day at a time and rely on my faith and a close friend who is very religious who keeps me "up" and is always praying for me and more importantly WITH me.

in reply to kkamegranny

All you can do is take it one day at a time like you are doing and pray that God will get you through it. Thank goodness for friends! I did call the doctor today about my husband's dementia being so bad and they said the Sinemet wouldn't cause that but Parkinson's people are prone to infections and if he has one, that could cause the problem. So, they said to contact his family doctor and have some blood work done as it could be a kidney infection. Hopefully, he will be better in the morning so I don't have to do that. Take care and my prayers are with you.

kkamegranny profile image
kkamegranny in reply to

Praying for you and your husband too. I belong to a prayer group at my church which meets on Tuesday mornings and it's wonderful to know all these people are praying for me.

Lupi profile image
Lupi

A close friend of mine chews his sinemet ( the fast acting not the ER) and then swallows it with coke. The neurologist said this will make it work faster. He also said not to eat anything with protein 45 min before AND after taking sinemet. The protein will keep the sinemet from working. I also have 12 years experience working with Parkies. Hope this helps anyone! Blessings,

Lupi

grammieof3 profile image
grammieof3

Has anyone tried botox shots for walking worked great for me i thought i was normal for a little bit. Had a bad reaction in may so no more shots

leedee profile image
leedee

I was on carbodopa 25 & levodopa 100 aka sinimet 25/100 2 times a day and 1 requip 12mg. I saw a new Dr. and she switched me to stalevo 100. Stalevo 100 is sinimet 25/100 with the addition of entacapone 100 aka comtan. Comtan prevents the break down of levodopa increasing its availability in the CNS. Duration for me is about 6hrs, I take it 3 times a day. I still take requip 12mg, the new DR advised me to take requip 8mg in the am and 4mg in the evening. This new regime has worked well for me, my symptoms are managed during the day and I am finding it easier to reposition myself during the night. I have more energy, my gait has improved, my affect is no longer flat and my movements are smoother. I am working on making my voice louder, my new normal is understanding that if I feel as though I am yelling that is perfect. For the first time since being diagnosed in 2008, I feel good!

I am so happy you have found the right combination of meds to help with your symptoms and that you are feeling good - that is wonderful!! We see the new doctor for the 2nd time on Aug. 2nd so will ask him about additional meds. The little increase in the 25/100 sinemet is working to some degree other than hubby sleeps all the time and does have the between med time when he gets worse. He also has the PD dementia which is getting worse and makes it hard for him to convey his symptoms to me so I know how he is really feeling. Wish we could find a med combination that will work for him. Keep feeling good!!

leedee profile image
leedee

Vitamin D supplements are common in the med regime. I would also look to see if there is a Big and Loud program in your area, it may open a support door for you while your husband learns valuable exercises.

Kadie57 profile image
Kadie57

There is a CR (Time released) Sinement that can be taken, I take one before bed and one at 2 a,m. this helped allot the pills is a 8 hr pill. and I use both the regular Sinement and CR (time released) for a total pf 18 pills a day, plus I had the DBS surgery which stopped the shaking!! Life is good, PD does not define me, I still run my own life PD takes a back seat !!

M1tz1 profile image
M1tz1

I give my husband his Madopar a half-hour before he tries to get up. Still doesn't help him to walk. The more he can't do it, the worse it gets, it seems.

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