After three years from dx till now no meds. Early Sunday morning my tremors were so bad I went to emergency room to see if they could give me something. They could not but the doc went ahead and gave me a prescription for levodopa/carb. This to do me until I can see my doctor Monday, if I can get in that early. I'll have him give me a prescription for Neupro patches.
emergency room : After three years from dx... - Cure Parkinson's
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Sorry to hear this. Hope the meds block the tremor.
Good luck with the meds they can be a life changer
Bailey
Will be interested to know how you get on.
in reply to stevie3
What caused me to go to the emergency room was not only tremors but strong discomfort over my entire body. While still in exam my blood pressure came down and I once again was feeling (near) normal. I left the ER with the temp C/L prescription.. I started taking the med. When I see my neurologist next week. I am going to ask how do I now safely stop entirely, C/L. I am first going to explain why I went to ER and ask him what caused my distress and what can I do to prevent it from occurring again.
Observation:
Last year I had a walking exercise regime. Result, it seemed to me that my right arm resumed swinging normally, when I did not hold my hand against my thigh to control the tremor.
1. The C/L had no noticeable improvement. I want to return to no med practice. I want to make it to the 5 year mark without meds.
2. I have resumed walking exercise. I did not loose any strength over the Winter months.... My arm still swings normally. Now let us see if I can keep up with the exercise.
Were you under stress prior to this "incident"? I seem to be far more symptomatic thanks to the current weather condition (windy, damp and cold). Hope levod had kicked in for you.
in reply to
Not under stress. Woke up just after three a.m. and was "beating the drum" and was in great discomfort,
in reply to
Welcome back, Roy. You had a dreadful Sunday! Rest up 🍀🍀🍀🍀
Hope things go well for you. I know you don't like meds, but a little can go a long way & make life so much easier.
I'm so sorry. I know (reading your sharing) how you have worked hard to keep away from meds. I've been reading PALFREMAN'S, Brain Storms. Lots of the advances in PD have been unintentional discoveries. Maybe this will be the case with you. Best!!
Hi Roy. Why does this s**t always happen on the weekends?? I've got my fingers crossed that the meds will kick in and bring you some blessed relief! Keep us posted ... I know we will all be thinking of you.
Sorry to hear.
Roy must be exhausted from all this..I would be..Hope he isn't too upset though I would be if I were him 😩
3 hours after my first dose of CL, 25-100, 1/2 tablet still tremors persist, Not as bad as at 3 o'clock this morning..Back to normal. While in the ER the tremors subsided somewhat while awaiting the results of my labs. They say my labs and blood work, better than they were two years ago.
Note: Carb/Levo way less costly than Neupro. I'll think, maybe go ahead amd get Neupro unless my neurologist has other suggestion.
Pete-1 in reply to
Don't forget that the Neupro option is a Dopamine agonist and that therefore means very unpleasant withdrawal if you want to stop using it.
Try a web search for Dopamine Agonist Withdrawal Syndrome (DAWS). Best to use the full name otherwise doesn't seem to find anything relevant.
If I were you I'd be considering the Levodopa option. Not problem free but not as awful as the agonist drug.
Rengifo04 in reply to
Roy your not on any meds? My father had the worse side effects with neupro patches, he was hallucinating real bad. Please be careful. I was so against all these meds. He started with Murcuna puriens (velvet bean) he did improve just a little, but we were not sure what his dosage should be. Also he was very lethargic, always falling asleep. Antisocial, withdrawing from conversations.. He doesn't have any tremors, he's rigid & stiff, shorts steps, shuffling walk, very slow, low voice, after some time of getting a second opinion from a neurologist we decided to go for carb/leva 25/100 3 times a day, his voice has improved a bit, he's definitely more alert & not completely out of it.., he has good & bad days... Right now I notice that he sometimes forget I'm his daughter, when he misplaces something then he can't find it he suspects someone stole his things. It's frustrating, & I believe the meds are making him forgetful & playing with his mind , but what can we do! It's so frustrating & difficult... My husband is in the military, I had to travel & leave him because my dad can't drive anymore & do the things he could before. I fly back & forth since 2014, I'm tired & my marriage is tired too. I feel helpless, i pray to God for the sake of everyone here trying to find answers towards this evil disease, God help us all...
in reply to Rengifo04
Had a session with neuro yesterday. He gave me some tests and exam then put me on ropinirole. In three weeks he will test and examine me again. The medicine does quell my tremors.
Hope the Rx gives you some relief
Good luck Roy
I reckon you have given it your best shot Roy. Hope you are not disheartened.
My wife is reading the Replies and says "what nice people".
We both appreciate you all.
Wish you the best
RoyProp
Sorry to hear you were in ER.
I enjoy reading your posts. I am not on meds yet (dx 8 mths) and will be interested to follow your progress. Hope you find the right meds for you and you have relief from the tremors. You have done very well to go for three years meds free.
All the best and stay strong.
The beta blocker Propanalol can be helpful for reducing tremors. I lasted five years on just Azilect and propanalol. Azilect probably has the least side effects and makes a good PD start drug. None of the PD drugs work straight away when you're new to them. I was told - give it up to six weeks! Deep slow breathing I find helpful too! Good luck.
in reply to Dap1948
"often take several months"
Tips on Taking Your Medications
ec-online.net/knowledge/art...
I would like to share with you some things I have learned over the past ten years about taking PD medications. For some of you this may not be new information, but it should serve as a good reminder. These helpful tips include the following:
•PD drugs are usually introduced in low doses and gradually increased over time. Remember, PD drugs often take several months to develop their full therapeutic effects and you need to be patient.
Good luck Roy!
RoyPop, sorry to hear about your experience. Did the Levodopa/Carb address your tremors completely? As you may remember I am 2+ years PD diagnosed and my major symptom is tremors which have increased. I have been prescribed the Neupro-patch but not yet started it. Can you tell me your experience with Neupro-patch if you have started it? As you may remember I have NOT started medications yet so this will be the first drug I take but I want to make sure it addresses the tremors.
Thank you and good luck and good health.
in reply to racerCP
3 yrs ago, when dx my neuro recommended the patch. That may not be his recommend at this late date of my PD.
I will be calling my neuro this morning for appointment to discuss meds and obtain a prescript. Last time I saw him, when I was dx 3 years ago.
The ER gave me a temp prescript. I have been on CL one day. Still tremors but not as severe. But that may not be the meds.
I will ask doc about Neupro patch as -
Pete-1 posted this reply -
Don't forget that the Neupro option is a Dopamine agonist and that therefore means very unpleasant withdrawal if you want to stop using it.
Try a web search for Dopamine Agonist Withdrawal Syndrome (DAWS). Best to use the full name otherwise doesn't seem to find anything relevant.
If I were you I'd be considering the Levodopa option. Not problem free but not as awful as the agonist drug.
My dad was on carbidopa-levodopa plus roprinorole for several years. Tremor and walking stiffness were his main PD issues. He did not like taking medicines, either, but told me multiple times that he could not function without those. Best to you.
So far I really like the levodopa/carb Sinemet. I hope that is all I ever have to take. The little yellow pill has made my handwriting normal and removed my slight tremor noticed only when lifting a cup or fork. Maybe I didn't need it yet but maybe it was good I got some dopamine when I did. I guess it won't work forever but since I am 74 maybe I won't live long enough to get the shaking problem people mention can come from taking it. It doesn't cost much which is nice. I don't think you should be afraid of it.
in reply to hopedope
please, what dose levodopa/carb Sinemet? The Emergergency Room doc prescribed 1/2 tablet, 25 - 100 Sinemet. x3 / day
hopedope in reply to
My dose is 25/100. I take the whole tablet.
Hi hopedope. What is your sinemet dosage? How many times a day? My father is 76 yrs old & started taking sinemet (3x daily) not even a year ago, he doesn't have the tremors. However, he's lost so much weight & his balance is off. He has the gait problem, he takes really small steps & gets tired quickly , he is extremely rigid, his arms don't move when he walks. The neuro had increased his dosage to 4 sinemet a day but it started to mess with his stomach.
Hi. My dosage is 25/100 three times a day. It is my original dosage from regular neurologist. I have seen a movement disorder specialist since then and she left the dosage the same. I have no tremors at all and my gait and balance are fine. In fact, I am now taking Tai Chi with "regular" people who don't know I have PD. So far any standing on one foot is done by beginners using a chair to hold on to. My balance is good though maybe because I used to figure skate a lot (at least through college years)--not like Dorothy Hamil though :).
You may want to titrate the c/l. Starting at 1/2 a tab 3x day for 3 days, then add 1 tab once daily, 1/2 tab twice daily for 3 days, then add 1 tab twice daily and 1/2 tab once daily-- you get the idea I'm sure. It can take some time to get use to c/l.
in reply to christymw
I will titrate. I will increase in three day increments until I reach 4 tabs per day on February 9th. Along the way, if and when tremors subside, I will mark the occasion as my dose level. I may even reduce back somewhat to allow for the six days or so the body adjusts to Sinemet. I will be prepared for the appointment with my neuro on the 24th.
Agree with Christy one one level, on the other, starting sinemet was smooth for me, no problems. More likely to get nausea at low doses so hang in if you do.
My neuro laughed at half sinemet as an inadequate dose. It may be a good amount to begin but it is unlikely to be effective enough for you at this stage and would just be a beginning dose and Will need increasing.
All the best
I take 2 1/2 tabs 5 times a day of 25/100 sinemet and it works wonders. I have little or no side affects it is a wonder drug. Can not function with out it.
I do not have tremor so i don't know much about how it works for tremor.
I am 62 and 10 years DX.
Bailey
hopedope in reply to
I'm so glad you're doing so well after 10 years on sinemet and taking it five times a day. That's great. I take the same amount but just three times a day for a year now. I think it is a wonder drug too.
Remember to take sinemet between meals and never around the time you eat anything with calcium, e.g., cheese, milk or for some reason ,yogurt. Don't eat Tums or drink Mylanta or any otc stomach coater. All those things inhibit absorption. And if it still doesn't work as well as you like, try sipping on a beer with it to raise your dopamine a little higher. If you feel a little nauseous from CL try munching on ginger snaps
in reply to BUZZ1397
1 hr before and 2 hours after
Hi Roy my Dr says 1 hour before & 1 hour after. I was also told protein was what we had to watch out for, along with dairy. The side effects of CL aren't as bad as the symptoms of PD and I did get used to most of them or they went away altogether after a while.
Wish you all a the best. LLWWD
68 yo, diagnosed 3 years earlier. By choice have not taken medicine. Then there was an event at 3am. I was feeling so terrible and my right arm tremor was more severe than normal. Went to emergency room thinking they could give me a muscle relaxant. That doc was not versed in Parkinson's but said he would give me script for Carbidopa Levodopa. Fearing another event before I can see my neurologist I am taking the med. The med is not for tremor. The mystery, during the ER exam, my blood pressure (stress) came down and I began to feel better. The time I have been taking the med, I feel the same as before the event. No change. I will see my neurologist ten days, the first time since the first exam 3 years ago. I will like to stop taking C/L and will see what the doc says about what may have caused the event and what I can do to prevent another event.
Hikoi in reply to
Roy I know that tremor is particularly difficult to treat but you say carbidopa / levadopa is not for tremor? I don't follow. It stops my tremor for a while.
in reply to Hikoi
what I read, not effective for tremor. My tremor intensity fluctuates over time and in what position I place my arm. Sometimes, no matter what I do, tremor. Maybe your tremor fluctuates normally w/o or with cl
Hikoi in reply to
Not effective? - everyone is different but I'm normal ie absolutely no tremor and can write, when it's working (8yrs PD ) It comes back like clockwork every 21/2 hrs when my levadopa has worn off! Very debilitating at those times I find.
in reply to Hikoi
A diagnosis tool, if symptoms are improved after taking Parkinson's med, confirming the dx. So, the C/L does not stop my tremors, I do not have Parkinson's. As my wife says, what could it be? Feb 24 I will address the issue with my neurologist.
Had a session with neuro yesterday. He gave me some tests and exam then put me on ropinirole. In three weeks he will test and examine me again. The medicine does quell my tremors.
Thanks for posting that. I finally started to take ropinirole two days ago, after leaving it in my drawer for a number of months. I'm on a very small dose, building up - I've agreed with my GP that when I get to a point where the dosage seems to be effective, I'll remain on that dose. I don't want to go up to the max which has been prescribed. I finally decided to start the medication because I felt the quality of my life was now adversely affected - I was very uncomfortable. So, Royprop, I'm going to watch how you get on with interest and I will report back as well.
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