Parkinson’s

[Cindyross]

Hi My name is Cindy I’m new to this blog. I was diagnosed with PD in 2015 when I was 54. I’m taking 100/25mg of levocarb one ever three hours through the day because my speech starts to slur if I don’t. I am also very light headed and dizzy so my neurologist put me on serc three time a day I have been on it for 3 days so far I don’t feel any different. I keep falling because of my light headedness and the worse fall was six weeks ago when I cracked three ribs falling against my counter. Is anyone out there that has PD has light headedness and if they do what are they taking or doing to fix it. I have it all day except when I lay down and I have had every test done and nothing and I drink lots of water and it’s not my blood pressure sooo🤷‍♀️

[John_morris71]

Cindy - sorry to hear about your PD and the condition that you are in. Have hope. In the next 3 to 5 years, there is going to be something close to a cure or a way to stop the progression of PD. (given the R&D and number of trials that are going on). Since you are relatively young, put that extra effort to stay strong and healthy so that when the time comes you can recover faster. You may want to go to an ENT if you have balance issues as you say that the falls that you experienced are not due to low blood pressure.

[Cindyross in reply to John_morris71]

Thanks I walk everyday and get 10,000 steps or more. That would be great if they could find a cure

[WinnieThePoo in reply to John_morris71]

I really like your attitude even if I'm not quite so confident on timescales 😀

[ion_ion]

I was diagnosed inn 2017 but symptoms started few years earlier. It started with tremor and weakness in the RH and later with anxiety, depression and balance. First of all I had to accept the situation. In March 2018 I started HDT which fixed all the non-motors symptoms. Few months ago I started 3x100/25 c/l and 2x100 amantadine to fix the tremor but it did not help. Two weeks ago I stopped amantadine and reduced c/l to 2x a day. Still I have some tremor but mentally I'm very good. The sleep and the stress removal (exercising, dancing, avoiding conflicts, ignoring idiots etc.) are more important than the medicines. My neuro asked me to go to 6x100/25 c/l and 3x100 amantadine to get rid of the tremor. I just did not want to do it as it seems the dose was too high and he was not sure that will help either.

[MBAnderson]

Lightheadedness is common in PD and it is common that PD pharmaceuticals either cause it or make it worse. Here's a good read.

webmd.com/parkinsons-diseas...

I'm not trying to make all my symptoms vanish. It allows me to be free of pharmaceuticals. But, I'm retired, so that makes it easier for me than others.

[Cindyross in reply to MBAnderson]

Thanks it was a interesting read I have tried everything except compression socks. I think I will give it a shot nothing too lose

[park_bear in reply to Cindyross]

Compression socks are a treatment for orthostatic hypotension. It does seem likely that you do have orthostatic hypotension but you need to first confirm this diagnosis before deciding on treatment. You can do this yourself with a good blood pressure cuff, which can be easily had at a reasonable price from Amazon. Measure your blood pressure first sitting, or, preferably, lying down. Then measure it standing up. Ideally these numbers should be the same. If there is more than 20 points difference in the systolic (higher) number you indeed do have orthostatic hypotension.

[jeffmayer]

sounds like a high dose considering you have only been diagnosed 2 years I must confess 2 to 3 years in I was falling a lot and shuffling ironicly enough I have been diagnosed 7 years and am more stable now than ever I cycle 20 to 30 miles a day took a while to get my meds sorted I do get mild dyskinesia in my opinion that is a small price to pay you do sound positive keep it up

[berniemyk]

Hi, I found out that I had PD about 4 years ago. Like you I had every test that was available. I tried every kind of meds. I had side affects with most of them, then a doctor friend of mine got me on Sinemet. I realise different meds suit different people.

I take Sinemet 250/25 2 x a day - am/pm

Artane 2mg 1 x a day - mid day.

All my symptoms went away. I am lucky.

If I am stressed, I shake a little, but I find I can control it by putting my mind to it.

I have meds for Anxiety and depression that seems to come with PD.

I have my ups and downs, mostly with anxiety and depression. Like you, I do have the occasional dizzy spells and balance times. I ride a bicycle, for how long, I don’t know and realise I am not very good on it. I will use it for as long as I’m able because I am sure it’s helping me, even at the cost of 3 vehicles bumping into me and I bumped into one myself. All pumps though did not result in me falling off.

Take care

[condor39]

‘tried every kind of med., then came to Sinemet??? That is weird , most physicians would start with Sinemet. I was in practice when it first became available, and watched the amazing effect it had. Now I am taking it myself, with very gratifying results.

I do not fiddle around with any supplements, but stay with proven remedies.

[Cindyross]

I am told that levodopa/carbidopa is the generic meds for sinemet. I hope this is right

[PDGal4]

I also have dizziness. I do have low BP but this is the kind of dizziness that does not make the room spin and does not get better when I lie down. A PT suggested vestibular in nature, gave me a few exercises, like holding your thumb about a foot from your face, and turning your head to the right then the left, all the while keeping your eyes on your thumb. Repeat 5-10 times. Helps me a lot.

[Cindyross in reply to PDGal4]

I’m the same it isn’t vertigo but I have had every test done and nothing but I feel better when I lie down standing for me is the worst. And I also did exercises like the one you suggested but they didn’t help either. And my BP is fine 🤷‍♀️

[Hidden]

Diagnosed

2012

My regimen:

The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...

Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –

Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... ; …

Parkinson's Relief, Questions and Answers

[Cindyross]

I have ordered my b1 thiamine hcl yesterday will arrive today will tell you how I’m doing. How long do you need to take before you saw a difference and how much should I start with