I fall more now that I had DBS surgery

[Kadie57]

Every since the DBS I fall more, I m taking Carbadopa./ Leveadopa- reg and CR's Miripex reg and a CR. I m not sure what to think We having trouble find the right doasge with the meds and I am working weekly with the docotors I wondering if taking to much Mirapex could cause this?Wondering if anyone has been falling more and if they know why?. My legs seem to stay taunt and my feet always want to walk in their tip toes I fell hard today, it happpened so fast I was on the floor. It is a balance thing too, my feet just stop and my body keeps moving. Thanks for helping it is good find others who may have the same problems I appreciated your input so much.

[Nina_Liu]

Levodopa/Carbidopa/Levodopa orally disintegrating tablet(Parcopa)(Stalevo)Mirapex, requip,Comtan.Seligiline and more, I have taken ALL of these, and the end result! They made me dopy!That's where they named Dopa! Last week I gathered enough courage to answer a blog and truthfully, it is the best medicine! I have my aid,who sees all my shaking and they too stay taunt and my toes want to tap dance. To make my self get out of the agony, I take a big deep breaths,close your eyes pull your shoulders back open your chest, lift one leg then the other, keep deep breathing,,you will soon feel better, and I do.As I'm writing this I'm doing doing

the exercise and trying to end this as I must be boring you. I hope this made some sense. It was nice chatting with you.

[Nina_Liu in reply to Nina_Liu]

Please excuse the mistake as I'm new to this, I wanted to tell you my aid, Marlene even marveled how serenely, I have been for the past 2 hrs! Her famous words of encouragement is "you will get over it"and "you will soon feel better"! gotta go now before I start tap dancing again!

[Dennis in reply to Nina_Liu]

Each AM I am weak, can't hardly move much less get out of bed by 10 am I am finally "alive." The day hit or miss on how badly the PD treats me but at 5-6 PM each night I hurt all over, legs begin to jump about and I feel "strange." I never know when the PD will attack me (although) I hurt most of the day. Any thoughts? ~~Dennis

[Court in reply to Dennis]

I am at my best in the morning. However, always have back pain and leg cramps and pain. Pain killers do not seem to help, neither does exercise. Gardening, which I love, nearly kills me. Especially my back. Wonder if the back pain is related to posture.

[Dennis in reply to Court]

I believe back pain is related to posture or at least can be! That is what my doc told me.

[Cookie1124 in reply to Court]

I have heard from many sources that back pain is related to posture.

[Kadie57]

Thank you for your post, I guess I will feel better soon, just wish it was now.I don't worry about mistakes, my mind is prefectly clear it seems sometimes when I type then I re read later and can't believe that was what I wrote. Take care and not much tap dancing!

[compucure]

I find that since my DBS in September 2011 that I have reduced my meds by around 50% which has stopped my falling. Hope this helps. Tony

[export]

kadle57.

How long is it since your op ? When i first had my DBS I was collapsinng ,my legs would suddenly give way and my arms . never did find out why or why it stop't.

When you had your DBS op were you told , it can take up to two years to work.

My question is how long have you had the DBS ?

yours EXPORT .

[Cookie1124 in reply to export]

I just had the DBS on 9/11/2017 so it's new. I just did t know that I would trade in tremors for falling and walking problems. Will these B problems really go away with medication changes?

[goose63058]

I had DBS a couple of years ago. I recently started to fall maybe with in the last 4 months. My first Parkinson's fall was in the kitchen. It started at the kitchen sink and ende up acrooss the room . I bonked my head on the oven door, hit my wrist on the counter, had the mother of all bruises on my butt from the landing and a broken wrist.up untill two nights ago i was taking ambian for sleep. I have no recollection of getting up or doing anything, but the morning after just above my elbow is a terrible big black and blue bruise, my left knee is so sore i have to walk with the cane, i can't find the lid for the milk gallon, and my night gown was stiff from a spill with some milk.I don't know if I walked into a wall or fell down. I also tripped over the cat in the hall one night, and slipped over their water dish and ended up in the window cill.All the dbs has done for stopped the dyskinasia when it stikes.

[Cookie1124 in reply to goose63058]

What doesyour. Neurologist say about it? When you do not have these symptoms before DBS and get them after DBS' it makes me wonder if it's a side effect. Medtronics (the neurostimulator people) are interested in this and are willing to meet doctors and patients to try to help. You might want to call them.

[Sadiesadie]

I have started falling recently, I had DBS in 2004 and 2005, fell so hard I cracked my stupid tailbone!! I also fell off my back porch. Both falls have been within the last several months. But I still do yoga 3-4 times a week and pilates twice weekly, I would not give them up for anything. Both my pilates instructor and my yoga instructors know about my PD so they tailor my workouts, as much as possible to my limitations and work on balance all the time.

[Cookie1124 in reply to Sadiesadie]

I would definitely not give them up! You are doin good by tailoring them to your condition. Any interest in having medtronics or the maker of your neurostimulator come out to your next appt with your doctor ? Do you think it could help? Would your doctor be willing to do this?

[Hidden]

I personally do not think that most of the issues some of you are having are related to having the DBS! I think a lot of your problems are due to other medications! It takes a long time for doctors to get the correct regiman of medications for each individual! Every person and their PD is different! I had DBS in Oct. 2006! I have had falls. But I believe is due to medications and not the DBS! Balance issues! I had to go without the stimulator for a whole week and I found out how I would be without the DBS! I am so very thankful had the surgery! It took time to get it right and we still adjust it every time I go to see my Neorologist! And I only had one side of my brain done, because I started bleeding in the brain and they had to stop. I'm considering getting the other side done soon! I hope this helps! I'm not a doctor, just my personal opinion!

[moonswife in reply to Hidden]

RacingChaplain,

I am going to agree with you based on what the neuro says. He always reminds me "HOW WELL YOUR RX WORKS IS AFFECTED BY 6 FACTORS" timing, exhaustion, dehydration, body temperature, heat index, protein intake, empty/full stomach. Every fall we can trace back to one of these issues. Oh yes, and the G...D....cat.

[Cookie1124 in reply to Hidden]

Thanks for your input. Did you know that they do asleep DBS now. Mine was very accurate in positioning the probe.my skeptical neurologist was impressed.iIt's worth looking in to! My question is why the docs think the the falling is caused by meds and cannot be fixed by a DBS setting?

[Kadie57]

I had both sides done, and agree with you I also think it's a med issue, so I have been tracking the meds on paper, appointment is Wed, I emailed aheead about the fall to the PD nurse so we can find a better way. The clinic is 2 1/2 hrs away so I have to plan for a driver,etc. It just seemed so wonderful the 2 weeks after surgery, yet I m not shaking so that is the true prize. Thanks for all the imput.

[Cookie1124]

i have the same problem! Ever since DBS my walking and balance are off. I have fallen many times. I need to use a walker or wheelchair now, it's especially bad at night and early morning. I did not have this problem prior to DBS.. My neurologist says he believes it is a meds problem.The medtronics people (who make the neurostimulator) are interested in this and offered to meet with my neurologist and me at my next appt. to see if they can help. My Neuroligist says it's a medication prob and doesn't want to meet with them. What to do? I trust my neurologist, have a good history with him. He gave me his cell phone number and said to text him with any problems.. He's always been there for me. I don't know what to do at this point.. Suggestions welcome!