Help!

I feel like I am sinking into despair. This is the 4th neurologist I've been to. I'm on sinemet 25/100 4x day. I tried selegeline but had so much dyskinesia I had to stop. I tried the patch for 2 months with no result, but only got worse. Now my new neuro prescribed Requip. But i didn't realize that they were large pills and i can't swallow them. And they're timed release so i can't cut them. I am so scared right now because it's hard to walk to get to the bathroom 4x a night. My neuro won't return my phone calls. What do i do? The sinemet is still working most of the time, but i don't take it at night because when it wears off I'm quite incapacitated. Any ideas? I'm about to give up. I just don't have the strength anymore.

69 Replies

oldestnewest
  • Hi Michaela13. Don't give up. Stress & getting yourself worked up is the worst thing for a PwP. Take 10 slow but deep breaths & try to think of some pleasant thoughts right now. I used to take Requip & it was rather small. Maybe for now they could give you some that's not time released & they would be smaller. What state do you live in?

  • maybe take requip with a swallow of applesauce?

  • Look into DBS buddy-took me out of despair!

  • Another thought is to take a Sinemet one of the times when you get up at night & it might help you get thru the night a little easier. I take Parcopa which dissolves on your tongue. Reason I went off Requip is because I had to go on Tamoxifen for 5 yrs for breast cancer. Have you tried Azilect? To find a new doctor, do a search for a Movement Disorder Specialist.

  • Do not give up! You're too young and too early into Dx. You need to get the right combination of meds at the right time.

  • Don't despair-- there are many options--try calling a pharmacy and asking the pharmacist about the options available for extended release sinemet or stalevo which is supposed to last longer and take it at night. also, you could take another dose in the night when you get up. maybe it would take care of the rest of the night. I don't know where you live, but it might be beneficial to visit cleveland clinic, mayo clinic or johns hopkins. During the night is there anyone who could help you get up? SOmetimes I keep a walker or an office chair on wheels next to the bed to get to the bathroom faster. Just be careful the chair doesnt slide out from under you. Pharmacists are very knowledgable and could give you ideas that you could ask the dr. about. Find a parkinsons expert somewhere and be persistent until you get help.

  • Hi Saik,

    Dyskinesias normally occur when either you have overdosed on Dopamine (L-dopa) or you have been taking Levodopa for a long time.

    Is it possible that your case of PD has progressed to the extent that Dopamine cannot be stored in the brain? Now if this were so then a large dose of Sinemet would appear for a while as an overdose. I am suggesting that in this case 1 x 125mg of Sinemet would be a large dose. What you may need is a small but regular dose of Levodopa in whatever form so that your brain has a supply that matches demand

    Taking Selegiline with a usual dose of Sinemet would preserve the amount of Dopamine floating about and again if it cannot be stored until needed then what is preserved + a usual dose may be enough to give you an overdose.

    So I am suggesting that you may need a timed release Levodopa and especially reduced if you are also taking Selegiline.

    Failing that perhaps A DBS implant is the way to go

    However you must continue to take a Dr.'s advice rather than mine as I am not medically trained.

  • Hi Saik, I think I addressed my last post to you and I should have addressed michaela13. Sorry to both of you especially if confused.

  • People with PD need doctors who will return their calls and work with them. Otherwise we can feel she or he has given up on us. And that's demoralizing. Can you find a movement disorder specialist who only treats PD and will work closely with you. Sounds like you you need a re-evaluation. Don't give up!! Don't give up on yourself. Get connected and get to work. One day at a time.

  • Hi Michaela. I am very surprised that selegiline gave you dyskinesia, but that well may mean that you don't have Pd! I am not a doctor so forgive me if i am wrong,

    Why do I say this? Well, selegiline helps you to keep more of the dopamine that is already in your brain, because it stops the natural breakdown of dopamine in the brain.

    My understanding is that too much dopamine in the brain causes dyskinesia. Many people get dyskinesia because they have to take so many levodopa (sinemet & other) tablets in order to get any relief from their tremors that the dopamine levels in the brain become so high that they show the signs of dyskinesia.

    Speak to your neurologist about this. If you get dyskinesia and you are taking selegiline and sinemet, then I think you should cut down the sinemet tablets. If you do not get the required relief from your symptoms then that is what your neurologist should be looking at.

    I hope this helps you.

    Kind regards

    John

  • John, i was on sinemet at the same time and my neuro didn't tell me i would have to back off the sinrmrt after a few days. I feel like I'm always guessing on my own. The selegeline seemed to really take effect. Wish i could try again but they're afraid of my low blood pressure. Did you have problems with low bp and the azilect?

  • Hi Michaela. Azilect tends to raise blood pressure because it also inhibits the breakdown of Tyramine in the body. Tyramine causes high blood pressure! Look at the bottom of page 57 of my book.

    Do you do any fast walking yet? If you do, your body produces GDNF, which repairs the damaged brain cells, which in turn produce more dopamine and you start to reverse the Pd.

    Is fast walking a problem fr you?

    Kind regards

    John

  • No but i can't go very far some days. I try to walk almost everyday. I have low blood pressure but my neuro wouldn't give me azilect because my bp was erratic- high in the morning and then low after i take the sinemet.

  • I really would like to try the selegeline again.

  • Hi michaela. I don't know what to say.

    You should not try to do fast walking every day.

    Please seriously consider walking as fast as YOU CAN for as little as five minutes, every second day. You can walk normally (slowly) every second day if you wish. After 2 weeks add five minutes onto your time and do that for the next two weeks. Keep a record of each walk showing time and distance. You will be amazed at how much good this will do you.

    Kind regards

    John

  • John if weather is to bad to get out and walk do you use a exercise bike In doors thanks

  • Hi Anthonyian. In South Africa the weather is never too bad to walk. If it is raining now, in an hour or two it will have changed. Our winters here in Cape Town don't get much cooler than 7 degrees celsius in the daytime. We get our rain mainly in the winter, generally in showers. I don't mind getting wet as long as it is not raining when I start. When it starts to rain after i am warmed-up, I am fine. I am never too far from home to not be able to get back within 20 minutes.

    When I lived in Johannesburg the temperatures get a lot lower in winter, but they are never less than -3 degrees and it seldom if ever rains in the winter. I was able to do my walks with no problems in the winter, but in summer, when we get our rain in short sharp thunder storms, I make sure I can get out before the storms start and am finished and back home when they let rip.

    Where do you live?

    John

  • Dear Michaela,

    Definitely don't give up, please. Don't despair. From what everyone says and from everything I read, it takes some time to get the medications sorted out and to find the right match with the meds and the right neurologist. I know it can be very discouraging. I'm not as knowledgeable as the others, so please try their good ideas. I just want you to know that you're not alone and that we care how you're doing. I'm praying for a bunch of little angels to come surround you.

    Best wishes and blessings to you,

    Leilani

  • L23 Thanks for your words Im sure there will be a cure for PD soon

  • I take a version of Sinemet that delivers Levodoa evenly over a 12 hour period. This tablet is so small I can hardy pick it up with my clumsy fingers

  • what is the name of that tablet please Pete-1.

  • I'd also like to know Pete.

  • Co-careldopa 25mg / 100mg m/r

  • Co-careldopa 25mg / 100mg m/r

  • Co-careldopa. I assume this is the generic name. I've also heard it called 1/2 Sinemet.

  • Pete are you in the US? sometimes the drugs are different.

  • UK. Yes sometimes different bur aren't the generic names usually he same?

  • We don't have a lot of med that you have. Like extended release sinemet. Only timed release

  • Co-careldopa 25mg / 100mg m/r

  • What is the name of that pill?

  • Co-careldopa 25mg / 100mg m/r

  • thanks!

  • I'm interested in finding this small sinemet,Having a terrible time with my PD . Ok at nite, take a 50/250 time release, but come daytime, all problems began, take 25/100 at 5 am,7. after eating so much starts,pressure in diaphragm,spasms, breathing problems, very weak, have to go to bed, heart jumping in chest, Now it's happening every day, I'm desperate, neuro says not Parkinson related. I also jerk. She wants me to take 31/2 sinemet every 3 hrs {4 x a day]

    I'm 88, have RA,Cll.

    Love this site, Can anyone offer suggestions. I forgot I get terrible sweats, also very cold. Thanks to suggestions. Arthur 84{ I'm a female} Azilect caused H & L blood pressure. After eating my Bp goes so low[80[s}

  • And... make sure you find a doctor who will at least return your calls during normal working hours (or, at LEAST, a member of his/her staff). Unresponsive, uncaring doctors need to be allowed to go out of business.

  • Thank you so much for your ideas. I think at this point I'm so confused that i haven't found the right med.

  • Don't forget M13 that if you combine exercise, 4 glasses of water, nice diet and the right med you will feel better............ have a positive mental attitude, hang on there is a cure soon for PWP

  • that's been the story of our life the last seven years , working out what works best . In our case none of them have given any real help . of course that doesn't apply to everyone so so don't give , I'm not .

    as far as consultant Gps and nurses are concerned I give up all hope ...

    the best help I have had for my husband is with the OT and she has been brilliant ,He wouldn't still be home with me without her . she has stayed through thick and thin until she got what worked for us in our case . I am 77 we do have career morning and night but mainly invade I am not well ,I also find it a bit more difficult hoisting into bed but I do EVERYTHING else myself . we have had 99 different carers in eighteen months so I can't let go I can't trust that they will do the best for John .

  • Please don't give up! There is someone who CAN help you. I've found I have to be my own advocate. I, too, am on my fourth Neurologist. I kept going to different ones until I felt comfortable and with someone who would listen to me. A good way to do this, is by going to seminars in your area. I don't know where you are, but I am 90 miles south of Chicago and travel to get to these. That's how I found my present Dr. It is worth the travel time and gas money!! I've been with him for 4 yrs and hit the jack pot! Go to pdf.org (Parkinson's Disease Foundation) or call them @ 800-467- 6676 and ask where these seminars are held in your area. Good luck .....

  • Please don't give up! There is someone who CAN help you. I've found I have to be my own advocate. I, too, am on my fourth Neurologist. I kept going to different ones until I felt comfortable and with someone who would listen to me. A good way to do this, is by going to seminars in your area. I don't know where you are, but I am 90 miles south of Chicago and travel to get to these. That's how I found my present Dr. It is worth the travel time and gas money!! I've been with him for 4 yrs and hit the jack pot! Go to pdf.org (Parkinson's Disease Foundation) or call them @ 800-467- 6676 and ask where these seminars are held in your area. Good luck .....

  • My husband has advanced PD. DBS helped the dyskinisia. He keeps a urinal beside the bed at night. He breaks up his time release pills, better than not taking them. He used Zandopa for a while, but it was a factor in constipation. Savor the good times and keep up the fight.

  • First take a deep breath! At this point I suggest your next appointment be with, not a neuro, but with your Pharmacist, a Doctor of drugs.. Think about it who knows more about drugs? They will help you!

    Next. Be grateful everyday for something. Me I am grateful that I wake up. I am grateful for my wife. I find it easy to be grateful for small stuff. It gives me strength & faith.

    GOD Bless & good health.

  • You haven't mentioned exercise..... It it imperative to do something everyday. Stretching is the easiest to initiate. Balance and endurance activities are also a must. If you can't safely walk, procure a stationary bike. Work up In all Aspects and try to enjoy the event. Meditation particularly slow deep breathing is great.

  • Are you seeing movement specislist? Talk to pharmacist about another form of requip. I take with some applesauce. Sounds like you rx needs to be

    Evened out. Less During day, and enough to get you through the night.

    Don't give up now. Call for help from PDF re docs near you

    -- or insist on seeing present doc. Often they don't know how patients are being treated by schedulers.

    Stay strong.

  • Hello Michaela 13, My husband feels the EXACT same way you do!!!!! He has trouble walking during the night to go to the bathroom!! He is now also having trouble walking when his Sinemet wears off. He wants to give up but knows God will not want this from him. I am always with him and help as much as I can but he is having trouble keeping a positive attitude. I feel for you Michaela 13!!! I know what you are going through!! Please don't give up!! And getting as upset and down about all this is only making you worse. Symptom wise. I think you are also suffering from depression. I know my husband is!! He is on Welbutrin but it doesn't seem to make him feel better. He tried a stronger dose and said he felt sick and went back down to the old dose. Anyway, I think you need to try an anti-depressant. As far as your doctor, that is how they become if they can not help you. They do all they can and then if it doesn't work for you they get to the point and actually say, "This is as good as you will be." This is what has happened to my husband. I know I am not giving you very much advice to help with your problem but I wanted to let you know you are not alone!! I think more people have it as bad or maybe even worse than you and my husband have it. Please keep fighting Michaela 13!!! It's ALL you can do!!! Take Sinemet during the night when you wake up. It may help next time you get up again. My husband is trying this. He takes it about every 3 hours now. 2 tablets of 25/100.

    God Bless you Michaela 13 and I hope by hearing you are not alone and so many people are in the same situation as you helps you a little. I am always praying for ALL of the people suffering with Parkinson's Disease and that a cure comes quickly!!

    Praying for peace for you until that cure comes.

    Mary

  • Thank you so much everyone. I don't know what i would do without all of you to give me the courage to keep going..

  • I took sinemet once before i went to bed. Then when i woke up i was like paralyzed because when it wears off its the worst for a while. Then it gets better.

  • My husband keeps a small plastic urinal next to the bed for night time use. I was afraid for him falling so suggested he try it. It also is quicker and he can go back to sleep easier. Sounds like you need timed release sinamet but as others have recommended, find a neuro who is movement disorder specialist

  • Put your foot down with the doctors. I went and sat in their clinic and refused to move.had I not done this I would be deadnow.

  • Hi Michaela13 - Not so good I hear (read). I started on Azilect about 7 yeas ago and that (still) works well with my Sinemet (25,100 4 times a day - two tabs) and my amantadine (100MG twice a day) and it still does. I take Requip (16 MG (two tabs of 8MG)) once a day in the evening

    You could also try upping your Sinemet

    Or you could try dispersible Cardiopa / Levodopa as a quick fix

    Do you exercise? That is a good thing to do

    We're all so different. That's the problem

    Kind regards and good luck

  • f55 often you take Azilect beside the Sinemet wich is awesome for your tremors

  • Hi Serg,

    I take a one MG tablet of Azilect with my first cocktail of the morning - any time between 09.00 and 10.00. As Isaid in. Y first response the Azilect made a huge difference to my reaction to the meds - and still does

    Kind regards

    Bob

  • Hi Bob do you take Sinemet along with Azilect?

  • Hi Serg

    Yes I take the Azilect with Sinemet and Amantadine as my first cocktail of the day. My second (+4 hours¡) comprises Sinemet and Amantadine with the third and fourth being only Sinemet - well actually I take Requip with the third

    Kind regards

    Bob

  • I take 1 Tbl of Sinemet w/ Amantidine first think in the mg and 1 tbl of sinemet at 1:00 PM along w/Benztropine then at 6:00 PM 1 tbl of Sinemet

    and the last at bed time, however early in the morning it starts my tremors againg becouse the meds they warned off and i started my cicly early, hows your expirience? Bob

    Good luck

    Serg

  • Hi f55 thanks for your response my Neust prescribe me Azilect with my Meds i'm going to try see how I feel

    Serg

  • Hi f55 thanks for your response my Neust prescribe me Azilect with my Meds i'm going to try see how I feel

    Serg

  • you got to live so something has to click and it will, i m just like you, so i understan you

  • Im in sinemet 4 x day And it works becouse i combine exercise And a good diet i started to have twice a day CO (coconut oil) And a list it is helping with my tremores however don't give up And have faith the cure is coming good look

  • Things they don't talk about. Parkinson's medication is absorbed in the upper bowels,not the stomach. PD directly causes constipation and the meds. also cause constipation, plus you do not get as much exercise as you used to. You take meds. every 4 hours but if every thing is blocked it can not be delivered efficiently. Maybe you are eating lots of vegetables and bran and fluids and getting lots of exercise and having a bowl movement once a day EVERY day and this is not the problem. But I do those things and still some days I have a huge gut and I can not get my pants on easily and I then realize too late that the drugs are not going to kick in the same. Those are the worst days my medication is not working and if not resolved a vicious cycle can start and every thing gets bad. Look up Parkinson's constipation on the internet for advise on what to do about it. I know every body is different but I am serious EVERY DAY without fail is the only way. My friends tell me I am full of it.

    I hope this helps

    Jim

  • I completely agree with you GymBag. Exercise is key and so is moving your bowels for the reaons you give

    Kind regards

  • Did you try Senna for constipation? Sold as Senacot over the counter. My husband's constipation was helped greatly with sennaC twice a day. Doc sais he could even take a third tab if needed. Also fruit/veg

  • That's very interesting jim . A similar thing happens with my husband his tummy at the end of the day is much bigger . He will often ask me to loosen his belt , he doesn't wear a belt . I buy extra larg trousers , there is more than enough room really . He does have some constipation but sit seems to happen at any time constipated or not

  • I don't think it's gluid retention

  • I assume that you ment Fluid

    No I don't think its fluid retention, feels solid to me. Abdomen is rock hard, and that's not muscle either.

  • Gymbags right what you eat and how you get rid of it matters more than ever.

    DYSKINESIA

    Is uncontrolled involuntary body movements,

    It usually occurs about 20 to 40 minutes after taking meds [.The dose peak or high].

    If you get dyskinetic then the balance is wrong and benefits lost

    The time factor is affected by your stomach,[and taking meds on time]

    •if its empty it will be absorbed quickly and efficiently

    •If its full it will take longer and less of the drug will make it to the destination the small intestine and it can only then begin its journey to your brain

    If you are new to the drug,it should be introduced at a low dose and increased very slowly to get the best response and everyone is different.

    Changing your neuro or your meds doesn’t help[there all pretty much the same] and if youve had 4 neuros,your probaby in trouble .

    Seek information, but at the end of the day you are the measure of your own health,

    The drugs work well,the tough bit is getting it right for you and that takes time several months .

    The ordinary release requip is a small pill

    controlled release sinemet very useful to some overnight,your paralysis on waking was it perhaps extreme

    stiffness,had you perhaps slept better.we often dont move in bed and can wake up rigid

  • I read everyone's comments and am frustrated all over again with the monster we call "Parkinson's". It seems to affect each person just a bit differently and it always takes a while to get the drugs regulated. And, just about the time they seem to be coordinated correctly, the disease worsens and we have to start all over! I was diagnosed six and a half years ago. Very quickly, I went to a specialist in Movement Disorders at a Movement Disorders Clinic. I have since moved on to a neurologist at a Movement Clinic nearer my home, but in both places, I found compassionate experts who listened, were easily accessible via phone and email, and who have always treated me with dignity and respect. My strategies for coping have included exercise at least 3 times a week: I love Yoga classes and swimming laps at the local YMCA. My biggest challenge has been reducing stress - I am and elementary school teacher! Two months ago, I had DBS surgery, in the field study being sponsored by Boston-Scientific. It is a LONG process, and I'm not where I want to be with it - final optimization is still two months away. I have had bouts of depression ( a rarity for me!) as I have had to face my limits, but the timed trials and exercise seem to help. SO does asking lots of questions and reading most anything and everything I can find about this illness. I've got to hand it to my husband and friends too - the support system they provide is phenomenal. If you can, find some folks in your area via a support group, so at least you have some camaraderie. Good luck! Don't give up. Just remember that you can be proactive in many ways that actually help the symptoms.

  • Michaela13,

    How are you feeling today?

  • I've been feeling a little better. Nights are so different. One night i can walk pretty good. The next I'll be struggling to make it to the bathroom. This new neuro wants me to try the patch again so i guess I'll do that. Thank you do much for thinking of me.

  • Please send me your e-mail address hnsjackson@telenet.be

You may also like...