how are you supposed to feel on meds?

this is my first attempt ever at talking online;i was dx with pd 2 years ago; i'll be 50 in feb; i started with just a small tremor in my right hand when i was lifting something and BAM you have pd; was teaching high school full time -- now on retirement, both school and ss disability (just got approved on jan 1 - phew what an ordeal)

MY doc is a move.  dis. spec. and has mr on azilect 1x/day; stalevo 150 2x; stalevo 125 2x and requip xl 1x at night; she also gave me a scrip for lorazapam for sleep and i take one everynight and still wake up at 2 or 3 and patientlly wait until 4 to take my pills....

my plea is AM I SUPPOSSED TO FEEL BETTER ON THESE MEDS; GENERALLY i get severe dyskinesia by lunch time and can barely walk/talk by 5 pm (i take meds 4 am; 8 am; 12 pm; 4pm) and go to  bed by 7 or 8 my off periods seem tobe more frequent than on...just wonderinig if anyone out there feels like exercising, biking, swimming or doing anything physical and what meds are theytaking cause i don't seem to be benefitting!

ive tried amantadine, mirapex, neupro, sinemet, comtan (stalevo is just the combo of those two)

any view would be appreciated

hi thewind! i try to think positive but sometimes i wonder what "normal" is as well; believe it or not i think the meds are sometimes worse than the symptoms --- but i can't really say that with any certainty but when its ready for my next pills i feel like im inslow motion, the tremor is not even a problem now (was never a "problem") just slow and slow and slow are my symptoms now when im going off my meds not a pleasant feeling

do you ever have dyskinesia ---- it seems to be a real problem for me; stressed, not enough sleep (oh i harken back to the days of sleeping to 6 and trying to pull myself out of bed to go to school; now i wake up bright eyed and bushy tailed --- well maybe not at 3 am!) good to hear from some compadre who is young -- also do you attend a support meeting?

Hi clover ann, I have also had problems w/ meds (especially Azilect): rashes, nausea, anxiety, apathy (you name it) - but no dyskinesia. I have been resistant to taking Sinemet so far for fear of TD. Currently the only PD specific med I'm on is Mirapex and it is being titrated up very slowly to see if I tolerate it better this time. Also take Effexor for PD related depression and .5 clonazepam for anxiety [related to lorazepam (another benzodiazepine) but longer acting]. Have also bee prescribed Ambien for occasional sleep difficulty. My movement problems are always in AM, i.e. "slow motion" and seem to get better as the day progresses - until I get tired, that is. As w/ you, the tremors are of lesser concern (mostly while stressed). My manual dexterity is shot - especially right hand - and writing longhand, typing, opening pill bottles are major projects. I was also a teacher for a time, then a mental health case manager, - but above all a writer -- and now sometimes I have to type with left hand only! But as you see, my neuro & I are still tinkering w/ meds. Sorry if I rambled

Hi Clover Ann,

I was dx with pd 14 or so years ago.  I don't have any tremor   I, too sometimes think the med makes me feel worse. Usually I take the meds 3 hours apart.  Depending what my day is going to be like, I have to work my meds so I am not out of it. If I go to church which starts at 10:45, I have to take meds at 6 a.m and again at 9, which will keep me till 12.  Sometimes after taking medsI feel so bad that I might be out of it for 30 minutes up to 2 hours. I take sinemet 4 times a day and someimes 5. I take requip the same time.  I take another med 3 times a day, but can't pu t my finger on the name now. Wish there was an answer.

Clover Ann,

Glad you found this site. As you mention, I find great support in 'talking' with others who share similar situations.

 

I am 53 and was diagnosed with PD almost 9 years ago - symptoms 2-3 years prior. I have only taken Requip/Requip XL with the exception of Azilect for a few months. I have been very fortunate to remain on a low dosage of meds - 12 mg Requip XL once in the morning. I sometimes get 'the yawns' from Requip XL so occasionally take Provigil to offset that side effect. I primarily get sleepy when not active - ex., sitting at a desk. I am VERY conscious of the sleepiness when driving and either take Provigil in addition to Requip XL or don't take Requip XL if driving long distances by myself.

 

My primary symptom is tremor on my right side. It's aggravated by stress, cold and physical activity such as exercising, gardening, etc. I recently (past year) have developed slowness on my right side (that darn mouse doesn't want to move exactly to that teeny, tiny check box without effort). I have been very fortunate to have had a slow progression.

 

Do the meds make me feel 'normal'? Yes, I would say they do. I actually forget I  have PD. I do not have dyskinesia, although that is more commonly a side effect of Sinemet or Stalevo (Sinemet with Comtan). As mentioned, my only side effect of meds is the sleepiness. I still work full-time and do every thing I ever did - just with a bit of a shake at times. I encourage you to educate yourself on your meds and work with your neuro/MDS. Only you know what works for you and what doesn't.

 

I am an avid believer in rigorous exercise. There is some evidence that rigorous exercise may be neuro-protective or slow the progession. I have been participating in a non-contact, boxing-based fitness program for people with Parkinson's for almost 3 and a half years. I believe exercise has made a difference and would encourage any one to exercise in whatever capacity they can. There is no fee for people in this program who have Parkinson's (so my purpose is not to promote this particular program). To see what it's about, go to www.youtube.com and search on 'Rock Steady Boxing'. Check out 'The Battle' and the NBC or ABC (I forget which one is posted there) stories.

 

Oh, I also started a young onset support group a few years ago and believe in the benefits of that for some folks. Different people get 'support' in different ways - meeting face-to-face, PD chat rooms, message boards like this, sharing an activity like boxing/exercise, etc. Do whatever works for you because it helps to know you are not alone - we are all in this together - and together we can make a difference.

 

Wow, I better quit before yekimo cuts me off ....  teeheeheeeee

lizzy4451

 

so oooo....does anyone out there fight dyskinesia; have been told several things...1) that since i'm so young (relatively speaking) TOO MUCH levadopa is making it past the blood brain barrier, so doctor says to eat protein when taking pills...doesm't help in the least

dyskinesia for me starts when i'm doing something that uses fine motor skills (like typing this); then my muscles tense up ESPECIALLY MY MOUTH - START TO CHEW ON MY INNER LIP - -MY ARMS FLAIL AROUND ALL THE WHILE MY MUSCLES ARE SO TENSE - i feel like i've run a  marathon by the end of the  day

question....can you go off sinemet after you've started or once you've started are you locked in for life?  i don't seem to get dyskinesia after taking requip xl however, i take it before bed

HELP!

thanx izzy4451 - i checked out the forum for yopa seems light on discussion but i signed up and i'll talk to my pharmacist

Hi everybody, interesting questions and answers. For newly diagnosed people it is important to remember that we are all different and will present great differences in our condition even if we are the same age and length of time with the condition. We all progress - or regress - at different rates. Likewise with medication but possibly more so. We all react differently to our medication despite possibly being on the same drug and dose. It must be very frustrating to know another person with Krapinsons who has had it much longer and who appears much healthier - it is the unique properties of this thing we have. 'Are we supposed to feel NORMAL when we take our meds?' Again, what is normal? I would say 'yes' with reservations. Once we know what we have I believe we should then redefine what 'normal' is. Pre Krapinsons normal is not post Krapinsons normal. We set ourselves up for much frustration if we don't redefine. People ask me what it is like having Krappo/ All I can say to them is 'Different' but for some of us 'Big Different'.
I use Neupro patches as the agonist; sinimet plus; and entacapone. I also take propanalol - a beta blocker used commonly to reduce blood pressure - which helps greatly to reduce my right hand tremor. I take all of my drugs for the day in one big shot in the morning and that does me well until the next day - only because it works for ME. I waited 9 months after dxs before i started meds and I knew I had Krappo 18 months prior to dxs.
Neupro works really well and I have posted information about it elsewhere on the threads but it appears it is politics and the power of the pharma companies in the states to lobby to keep it off the shelves. [one presumes because they were not granted a licence to manufacture over there].

I don't feel that much worse than I did 4 years ago and I am hoping to go back to work again soon - I was retired on health grounds last year!
Don't be dispirited and if anyone wants to know more about neupro in case it gets licensed do email me on [email protected]
take care people
The Bear