Is it me? or does everyone with PD ride this rollercoaster daily?

Everyday every two hours I go from nauseous and fuzzy to right as rain and back again. When I'm up I'm up and when I'm down I'm down. In the evening when I stop the meds I feel better but less mobile.

I'm 47, dx'd 3 years, 3 kids at home (15, 12 and 6), self-empoloyed whew!

What I'm on: stalevo (4*125 in the morning, 4x100 afternoon - paced every two hours)

Azilect (1 in the morning), Amantadine (2 in the morning 1 at lunch).

Is this hellish seesaw normal for pders? Are the sweats and nausea side effects of the stalevo? If I had DBS I could reduce stalevo and possibly that. Should I get DBS?

13 Replies

  • Welcome to my world. Everyday isn't consistant but I am putting less good days in a row.

  • I too am slowing down. About 1/2 of a day is all I can go is gestting more often. I am dizzy and that just add to the problem...

  • to hours to days and depends rest, meds etc, everyone is different!

  • Welcome to the world of Parkinsons. No two days, or even two hours are the same. This makes it very difficult to plan ahead. I do not feel sick or dizzy. I take Stalevo 4/5 times a day. I take requip and half sinemet during night. Food affects how I feel. I don't think I will ever understand Parkinsons, it has so many facets and is different for all of us. Good luck.

  • I so agree with you. Sometimes I think I should keep a notebood about what I eat and when, how much sleep I get, stress level, etc. I've been on sinemet for 25 yrs and take ropinerole and azelect. (small dosages)

  • I am on Mirepex and Levodopa , you described PD perfect ! A roller coaster ride ( for sure ) if it looks like iam feeling good when i wake up , I end up doing too much, and will start feeling super dizzy .then some mornings I wake up and it hurts to walk, because my right toes curl up! A lot of nights I spend wide. Awake.i also have severe shoulder pain.

    Wow,,, I really commend you for taking care of 3 KIDS and holding down a job! That is just amazing!

  • That sounds like PD to me!

  • I'm in Leeds - where's your tearoom, oldtyke?

    The problem is nobody seems to recognise this aspect of PD. The feeling cacky half the time. Sweating and tired. Horrible!

  • hi, i am 52 y. o., had been diagnosed 3 y, ago, have 7 y.o. kid at home and 28 y. o. kid living independently. i am only on azilect 1mg/day. i really feel what you feel when it is about little kids! pd is a roller coaster life style, but you, guys, try to add kids in it! the thing i am trying to understand - seems like adding other medications does not make us feel much better, even worse because of side effects. and still - stiffness, pain, etc. Of course, everybody is different, but stil a lot of similar symptoms. i am trying to decide if i need to ask for more meds... my problem is balance and some freezing for a few minutes. of course - very tired in the evening, but 7 y. o. for even normal 52 y. o. mom sounds right, isn' t it?

  • Thank you for describing this issue. For me, it has never been the mobility or lack of it that bothers me. I accept the slowness and the stiffness and stretching exercise helps. But tt's this up and down indescribible awful feeling that truly bothers me the most about pD. I think they are just now addressing this - the non motor symptoms. I feel the best in the morining and can get out of bed eagerly to walk the dog and make breakfast. Around 10, I need to start taking my meds. After that, it's down hill all the way. The anxious nervous feeling w somehopeless feelings brought me to the neuro. HE prescribed Lexapro a few weeks ago. I am finding that it has helped this "moody, uncomfortable feeling" and I have been trying to get used to this lexapro. It makes my jaw very sore from clenching at night on my night guard. Also, I'm not happy about starting another med that's going to be difficult to get off of. I take 1/2 a pill ( 5mg) although the dr. described 10mg. Upset, that I shouldn't be calling myself "Allnatural" anymore even tho I still am taking Zandopa mucuna.

  • I was getting that I couldn't walk more than a 100m without distonia in my left foot so I went to a podiatrist who referred me to neurolgy and wham bam I get dxd with pd. that was 2010 and I was put on ropinerole right away which worked but needed to be increased quite rapidly and around 18 months later I was on 12mg a day slow release. What happend over that time is I put on 20Kg, developed sleep apnea as a consequence, as well as insomnia, had oedema in my legs and eventually a chest infection sent me to hospital. before going into hospital i tried neupro patches instead but they were useless - kept falling off so I was in hospital, on no effective meds and quite immobile. then my neuro said 'think we better try levadopa' and proscribed me stalevo.this has now risen to 900mg per day over 8 batches of pills together with some azilect and amantadine for good luck.


    i am mostly mobile

    I am 25kg lighter

    Half the time I feel great

    Half the time I feel ill

    cycle of two hours does my head in

    don't now whether sweats and unwell feelings are

    I sleep (but need to pee at 4am)

    start taking meds at 6am end at 8pm odd but by 11pm feeling ok if a bit stiff shuffly and tired.

    6yr old boy invariably wakes me at 6am and it all starts again.

    anyone whose haad dbs have this sort of lifesyle and did DBS make it a bit better?

  • Yes, that's about it. I'm supposed to go to a wedding Sunday and someone offered a ride. I had to explain that I may or may not be able to sit in a car much less through a dinner in the evening, due to pain and dystonia. Sigh.

  • You hit it square on. I am good for about 2 hours a day. Then I crash and am not worth a darn the rest of the day. I crash even if I don't do anything for those 2 hours.

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