crazy meds

i take sinemet 25./100 every 2 hrs and mirapax .25 every 4 hrs both starting at 4 am and the way the meds work are crazy! sometimes they kick in 20 min sometimes an hr 1/2 and every time in between... sometimes when i take a dose it doesn't even work... sometimes back to back doses so for 4 hours i am miserable and can't do anything.... unable to walk/move. other times when i take a dose and i may take a few min early to prevent "wear off" and i feel perfectly fine then about 10 - 20 min later i feel worse before feeling better. no rhyme or reason for any pf this. is it possible to have that nice consistency thruout my days so i can enjoy them bec. this roller coaster ride i am on really sucks and i never know how i will be from min to min. when my meds do work i feel somewhat normal...walking/moving normal sometimes without a cane even. although my balance still may be affected, but not always. does anyone else experience this? what could possibly be making me this way or is it just the way it can be? is it what i eat or my activity? i know protein can affect the way the meds work, but it's kinda hard to avoid an hr or 2 before or after taking meds when i am on a a schedule every 2 hrs. i talk to my dr. about it and he just says that how it is.... welcome to the world of parkinson's.... i hear a lil sarcarism in that statement. every time i bring up something new that's his comment. everything just gets blamed on parkinson's. well, i am going to mayo clinic in december to see if they can offer any other treatment options for me and i am looking for a new neurologist in january. does anyone think it's a good idea for going to mayo clinic? all your thoughts and comments welcome! please help! would also love to hear if anyone has this much trouble with their medications. thank you.

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  • Good Morning from Florida; I to have the same kind of resaults and have no idea why, sorry but I not sure there is a good answer. About Mayo here in Jacksonville it seems they have given up on PD they even cancelled their support group.

    Sorry for the spelling but it has become a hardship to remember words.

    Regards;

    ERIC

  • thx for your response. that's a bummer about mayo jacksonville. i will be headed up to mayo in mn. i thought it was a bit weird that mayo had no clinical trials that they are doing for pd in any 3 of the locations. im not going to lose hope yet, that is all i have to go by. i've chatted w/other people about mayo and they had good results. this is so exhausting looking for answers.....

  • You didn't mention if your neurologist is a movement disorder specialist. It's key to managing the disease that you do see a MDS.

    Have you tried Sinemet ER at bedtime? I take Sinemet 25/100 every 3 1/2 hours and Mirapex .50 twice per day - one with my 7:30 Sinemet and one with my 2:30 Sinemet. I take Simemet 50/200 ER at night. There are days, depending on my activity, stress level, etc., when I have to modify my Sinemet dose by taking half a pill to hold me til the next regular dose.

    I'd definitely tell that doctor he's an ass and move on.

  • ha, thank you me n family think such! yes, he i believe he is a movement disorder specialist. i started out seeing a regular neurologist and he referred him to him said he specializes in pd. yes, i did talk to him about sinemet er at bedtime... he petty much shot that idea down n said it probably wouldn't work for me. yep, i'm in the process of getting my records now for mayo clinic and new dr that i will be switching to.

  • The sinemet er at bedtime has helped me significantly - i take 2 tabs of 50-200 about 9:30 pm. good luck

  • Fluctuations... makes me feel crazy. Are you tremor dominant? Seems to me that it is a differenmt disease for those that aren't.

  • I have no tremors. i am mostly stiff and move slow which makes my balance and posture very poor. and very unsteady gait. i can't do much of anything when i am "off" bec. i really can't move or walk. it wears me out if i try and do simple daily tasks we all take for granted. what disease(s) would that be? i did have a dat scan, although still not 100% it proves parkinson's the results were consistent with parkinson's

  • I too have had a datscan that confirms PD. I went for 10 years with the dx but still felt that because I didn't have tremors I must be nuts. Non tremor pd seems to be more likely to include anxiety, depression and dementia... from what I've been reading. BUT every case seems to present differently.

  • i also heard that if you have the form of parkinson's without tremor that is the worst kind. it progresses more rapidly and is more severely disabling. i was diagnosed in 2009 at the age of 40 and have progressed really fast and am disabled. within 1 or 2 yrs. had to quit my job. no longer drive. walk with a cane or walker (which is pretty much useless when i am real bad) i use a scooter when i go somewhere when there is alot of walking. my husband has to help me sometimes with dressing, getting in/out of bed, bathing, etc. to name a few when i am bad off which seems to be alot lately. my meds are less effective. this really bites. i just want my life back ya know.. i also suffer from anxiety and depression. thank god for my wonderful hubby and parents

  • i too have heard that the non tremor kind is worse than the tremor pd - i was dxd in 2010 and cannot walk now or dress or wash / bathe without my darling husbands assistance - i dt have depession though which is a blessing ---

  • hi

    i hav e PSP which mimics parkinsons in some ways - no tremor but other symptoms r similar

    ie falling and balance problems

    co ord problems

    no depression altho i suffere dit for most of miy adult life

    dxd at age 64 2 yrs ago

    eye problems too -with eyes closign/ not blinking /and downward gaze affected

    no meds to tkae fo rit - i tried sinemet and amantadien and no difference - one fo the ways of diagnosign psp

    but..

    i am good!!!!

    lol Jill

    ;-)

  • I know that PD effects all of us in different ways, but I've never heard of anyone taking Sinemet 25/100 every two hours. I've been on L-dopa/C-dopa since 1998 and although my neurologist and I have experimented with the LA tablets, my dosage and frequency has remained 25/100 and three to four times a day. Now the other medications I have been on run the gammot. Azilect & Comtan are my two current drugs, but over the years, we have tried Rotigotine (Neupro patch), Pramipexole, Selegine and Amantadine. I also have, at times, supplemented my prescribed medications with CoQ10, Vitamin C & E.

    I find stress, lack of sleep, diet (eating too much or too little), alcoholic intake, infections and other minor diseases, all effect the efficacy of my medications. There are probably things I do that cause my symptoms to recur at odd times that I am not even aware of.

    Anyhoo, I hope this has helped.

  • thank you. i recently tried the patch and it made me sick, buy the 3rd day i was vomiting...when i removed it i quit vomiting. i have also took coq10,vit c and vit e.would you say comtan and azilect work better than the sinemet? i know that we all respond differently to meds. i have also noticed stress and lack of sleep and protein intake around same time as taking meds all affect how they work,

  • I think the Azilect and Comtan enhance the efficiency of the Sinemet. I believe it's called a "synergistic" effect. My doctor had me cut my Comtan from three times a day to twice a day bcause I was getting a lot of dystonia from taking too much. The only way I can tell the Azilect is working is if I miss a dose or two. Then, I notice the wear-off time of the Sinemet is shorter and my tremors are increased.

  • I am taking Stalevo 100mg 2 times a day 7am and 11am and Requipt 4mg at 4PM shake. Was taking Stalevo 3times and Requipt at 7-8PM was better but sleep 4-6hours. When I skipped Reqipt I slept 8 hours. IF I take too much I shake too little I shake. I think I will go back to 3X stalevo + requipt and naps.

    Paulfg

  • Good Morning greetings from Ireland ,

    Parkinson’s is such a unique disease that we all have different symptoms and different responses to medication to stress etc

    I was diagnosed in 2004 and have spent the last 8 years learning how to manage it so I will share a little bit of what has supported me and maybe it may help you .I have learnt the most about manging Parkinsons, from my fellow Parkinson's Community

    .In relation to your medication and how to manage it can you answer these questions

    Do you know what medication you are taking ?

    Do you know when you are supposed to take them?

    Do you know how you are you supposed to take it (recommend a full glass of water with each dose .

    why a full glass of water? The tablets have to get into your gut and through your blood system back into your brain, water helps the journey so give it every chance!!!)

    Do you have to take them before food ,does protein interfere with them (again only you can answer these questions as food plays a huge part in managing Parkinsons both what we eat and when we eat only you know how food reacts to the medication.

    Do you know what the medication is supposed to do?

    (for me levadopa is what gets me walking I don’t have tremor I have slowness of movement.For everyone it is different that is why we have to take ownership)

    If you cannot answer any part of these questioins you need to talk to your healthcare professional who can give you expert advice on what your choices are and then together you can put a plan in place.

    Once I get my medication in order then I can start looking at the other areas that hugely support my quality of life with Parkinson’s if I manage them.

    Nutrition, Exercise, Emotional Well being and Optional treatment.

    Managing Parkinson’s disease is a full time job and I would regard myself as having a good understanding and yet last week I got caught out again ! I had a few very bad off days and had to take a good look at what was the cause, my off periods were more frequent and I could hardly move (I would be regarded as very positive but even my daughter said “Mum this is just so challenging “ )

    Increasing my medication for me I knew was not the answer

    So I worked it out

    1. I was not drinking enough water

    2 I was constipated {causes havoc with my mediation)

    3 I had missed a session in the gym

    4 My mum was very ill she is 84 had a stroke 10 years ago is now blind went into hospital for some tests got the vomiting bug and they stopped all visitors she is hugely dependent on her family and I thought had problems!!!(And I was stressed and upset (that’s normal).

    So what did I do?

    1. So I upped my water, got some fibre etc into me

    2. Added in another gym session

    3. Got back to my meditation and mindfulness breathing

    4. Started planning my food again!

    Result have had a few very good days and my mobility is much improved and yet I am still always amazed when I take ownershiip and it works!!

    For me I have to manage Parkinson’s otherwise it manages me!!!

    Hope this may be of some help Mag

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  • I liked this post. I think you are so right.

  • thank you so much very good information. I did hear about drinking plenty of water with medication..... I do try to drink as much as I can but honestly I do not like water but I suck it up and drinking anyway. I can't say that I drink a full glass every time I take my dose because I will be drinking a full glass every 2 hours I will be floating, but I do drink as much as I can most of the time is usually around the time I take my medication and other times during the day I take it a drink here in there ..... A big swallow or 2. I also take fiber supplements. do you think tea or kool aid would work just as well as water? I used to have a membership at the gym.... but it got to the point to where I had to give it up because I could no longer drive me there and if I would when I would get there I could not do anything my meds would usually stop working ..... probably stress related so now I do exercises at home when I can.

  • hi i too gave up gym memebrship as i could no longe rswim (cannot co-ordinat earms and legs) and my balance is so poor tha ti dar ento do nay of hge exercise classes

    but i try to hav e alittle walk each day iwht a stick and an arm to hold on to

    and do some indoo rexercises

    lol jIll

    :-)

  • hi

    a good post if you can tkae the meds

    lol Jill

    :-)

  • I hear a lot of sarcasm in that statement by your Doctor. How does he know to welcome you to the world of PD or does he have it too? Treating it and having it is two completely different things.

    He sounds quite unsympathetic to me, and should be doing his best to find which drugs do work with you.

    Some drugs just make you feel worse.

    I dont have much faith in the medical profession personally and yet we rely on them for the drugs we need.

    Have you tried to do some research yourself as to what you think might be better in the drug department?

    I wish you all the very best.

  • I knew right that's what I thought. he had try me on stalevo and comtan at different times but what I do not understand is he would keep me on my regular medication every 2 hours and then you say about 1 o'clock I would not take my regular medication he would have me take just 1 pill either 1 whichever when he was trying and then 2 hours later I would start back up my regular medications..... now how can you tell if something is going work for you doing it that way? it just makes sense for me to get off the other completely before starting the new. do you agree or do you think the doctor was right doing that way? I live on NY computer it seems like doing research.... I have even tried alternative medicine.... I would love to be on natural home remedies without the side effects. I honestly do believe that sometimes the drugs he has me taking make me feel worse.... not quite sure if it is the frequency or the drugs or both. thank you.

  • Hi tmhiggs :

    the roller coaster realy does suck i have less of a problem now since my doctor put me on stelevo 200 x 4 and 100 x 1 per day , i had been on sinimet before the stelevo will last at least 3 hours and it is pretty dependable

  • Yes, I have this problem. What I eat makes a huge difference most of the time. Protein is a problem, so are nitrates (hot dogs, cold cuts) Doctors don't really know about this because everyone is different. Try not eating protein for breakfast and lunch. That usually works for me. By works I mean sometimes ......maybe. :)

  • yeah I have noticed when I drink a glass of milk in the morning with medications they don't work as well. never heard about the nitrates though that is interesting. thank you :)

  • thank you everyone for all your responses.

  • it is very interesting to read all the comments here - esp about the milk - protien -- i have cerial and milk for breakfast mostdays and then find i cannot walk as well as i did before i eat - so what do most people have for breakfst - i have tried rice milk which is ok but more fattening thn semi skimed milk - maybe i will ask a question ...

  • Pop tarts, toast, sausage or bacon bisquit minus the egg....less protein as possible.

  • I do not eat anything in the morning until after my meds kick in. Then I usually have raisin toast and coffee. I try to not eat too muh protein especially beef I think is the worst. If I have to go somewhere and want my meds to work better I try not to have protein. But sometimes this "parkie" thing seems creep up on you. I believe we know our body better than the Dr. We just have to find what woks for us. Exercise,rest and

    less stress are very important. Also stay away from negative people. Hang in there and don't give up. P.s. find a good movement specialist that treats you with respect!

  • thank you I did find a new doctor. he is a movement disorder specialist with good reviews by the patients. however I have to wait till February to get in see him. they did put me on a cancellation list so hopefully I will get in soon.

  • I react the very same way. I spend more time frozen than not. I'm misserable.

  • I am in NZ. I start my first medication at 6.00am. This is 1 1/2 Sinemet 100/25mg, 1 Comtan 200mg, 1 Ropinirole 2mg. The next meds are at 8.00am.10.00, 12.00noon, 2.00pm. 4.00pm. 6.00pm.These are all the same as the 6.00am meds. Then at 8.30pm I take 1 Sinemet 50mg/200 CR. This medication gets me through the day with no side effects. I don't have an off period or on, it is just the same every day.. I must say though I have had DBS 2 years ago.

    Hope this will be of some help. If I am going out at night I take another lot of my 6.00pm meds at 8.00pm then I take my night sinemet 2 hours later and that keeps me going through the night. Things maybe a bit different in New Zealand.

    Khazan:

  • My husband has only ever been prescribed sinemet inc sinemet cr at night along with the rotigotine . has been on then for at least 5 years . Can honestly say I don't really think they have helped or made a great deal of difference we have tried difference strengths and routines during this period .

    I have often wondered if there is an another drug he could have tried

    Whenever we see his consultant he shrugs and tells us he us doing ok . But he doesnt live with us . !!,

  • I would suggest in seeing another doctor. let me ask did he see a movement disorder specialist? because that is the key that it is you need to see. there are so many medications available. it is just a matter of finding the right 1 for you. however sinemet it is the standard gold treatment for Parkinson's.... but I believe is most people take the CR form only to be taking 1 or 2 tablets at bedtime to get through the night but then take the regular sinemet throughout the day and it usually does work well. I take that and mirapex thtuout my day. and it does help . even know my days are not great I do experience on n off periods . during my off. I don't do much of anything until my meds kick back in and then I'm good to go. is something I had to use to but at least I can get to thru my days n function pretty well I hope this helps and good luck.

  • My husband only takes one Sinemet CR at bedtime . I asked the consultant if I might try giving him a Sinemet CR in the morning and then a sinemet 110 later in the morning . he sint brill but no worse . How long do you think Sinemet CR lasts .

  • i'm really not sure cuz i have never been on it. it seems to be some people on this site take it at bed time to get them thru the nite so i imagine several hrs. i asked my doc about it cuz i wanted to try at nite bec it is so hard on me i cant move around in bed and he moreless stuck his nose up about it and said it doesn't work very well but other people in here it seems to work for them. i cant wait to get in and see my new doc.

  • keep at him . I think it does help my husband but he does take a low dose Amitriptyline as well , he manages on10 mg . It is an antidepressant which is now prescribed in low doses for nerve pain and restless legs which is what can happen in Parkinsons . That also has helped my husband .

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