Dx 2003 aged 46. until about 6 months ago i refused to be beaten. Now I am utterly beaten. For years I’ve taken madopar every 90 mins . I have always had sudden swings between off and on but was able to make them bearable – with the odd blip - with extra madopar. I worked out years ago that protein interferes with my medication, and with a carefully planned diet minimised the effect. Now all food - and even not eating - seems to stop my medication working . For the first time that I have lost control.
I knew it would happen – I just hoped I would continure to be able to understand how to minimise the effects of long term PD. I am not suitable for DBS. I recently had a hosptial trial with apomorphine - with out success.
I had the first classic PD symptoms a year ago after falling off a ladder. Now 80% of the time i'm a stooped, shuffling, juddering wreck and for much of that 80% i can't move at all. My voice becomes a faint croak and my breathing is rasping., In the last few weeks I feel i'm struggling to breathe and I'm told all the colour drains from my face and I go ashen, then grey. I have always been a very determined person and can push through any amount of pain but when I'm ‘’off’ I literally can’t do a thing. I am too weak to stand – even with two stiicks, let alone walk. I feel as though all the life force has drained from me. Dispersible madopar can 'revive' me for a bit - like magic - but i'm certain it makes the next off even worse.
I don't understand how I can appear (and feel!) as though I'm dying yet half an hour later I can walk, talk and am a normal colour again. I know of course that my body starts to work again as a result of my dopamine levels rising but my levels must be so low during the offs that if they continue to get worse at their present rate, pretty soon they will go so low that my body will give up and I will actually die during an off. I live alone and I don't enjoy the thought. . I've never been a drama queen but I need help and there isn't any. ( I had planned to be able to afford full time care in the final stages but a cowboy builder put paid to that idea.) Do I just take more and more madopar?
I have a very good, understanding GP but he told me a couple of weeks ago that I am extremely well informed, know far more than he does and he sees his role as 'rubber stamping ' my decisions. My consultant says the speed i switch between on and off is so unusual and the offs so severe, that he didn't believe me until he saw it happening in front of him.. However he seems to think that 'unusual' means he can't actuallly do anything to help.
.Have others managed to devise a medication scheme to stabilise - and even improve this situation?
I take 125 madopoar and 200mg entacapone at 07.00: 10.00:13.00: 16.00: 1900: 22.00:
I take 62.5 madopar at 08.30: 11.30:14.30: 17.30: 20.30.
I take 125 slow release madopar at midnight and 62.5 madopar once or twice during the night when I wake.
This totals c. 1000 mg madopar per day.
I also take Safinamide (Xadago) 1x a day, 15mg Mirtazapine every other day, Atenolol 50 mg 1x a day. I take betahistine for vertigo occasionally and diazepam for dystonia in my feet occasionally. I used to take Amantadine but it was stopped because of severe mottling of my skin (which still occurs and is worse when I'm 'off)
. A couple of days ago I added two more slow acting madoopar - i at 10.00 and 14.30 and had a better day. The next day I felt worse than ever.
I should be grateful to hear from anyone who has been able to manage similar situations by raising their total madopar and/or by swapping or adding in slow acting (controlled release madopar). Or by any method!!
Apologies for typos - this has taken over an hour!
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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:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 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”.
I was just diagnosed a year ago and I wish I could offer some advice, but I can't. I can only say that I am praying for you and for all of us. Thank you for sharing your story. I hope someone more knowledgeable and experienced than I can provide you with some practical advice. God bless you.
Thank you for your kind words. I'm overwhelmed by the number of generous people who have taken the time to reply. It's very humbling and I am so grateful.
I have involuntary body movements that caused me to twitch all over, I have movements with my tongue that caused me to bite it all day long and sometimes it’s so raw and bleeding. I have started on CBD oil not the $14.99 that you would pay for it on Amazon. Not all CBD oil is created equal. Within a few weeks my symptoms are gone, I have no More body twitching and my tongue has healed up beautifully! I am elated! Have you given that a try? It might be worth your while. Any questions? I will be happy to respond.
Thank you for your reply. Ì did try CBD - an American friend gave me some (legal!) Unfortunately it didn't seem to have an effect. Thanks for the thought
From my knowledge that is not necessarily true. Most CBD oil has 0.3% THC which activates the CBD oil to give you the best benefit. You can buy CBD oil with absolutely no THC and still receive benefits, excellent benefits. In some states THC is not legal and people could also lose their jobs. I Live in a state that is not legal for THC or medical marijuana. However, I do add additional THC in the form of edibles. I am very cautious with it because I don’t want to get high. Low doses of additional THC will give you an overall body relaxation. I love it! Talk about a good nights sleep! And a host of other wonderful medical benefits
I live in California, it is OK to use it with doctors permission. In my experience, CBD alone does nothing. It works only with addition ( and mostly,) THC. Edibles are excellent for treating all bad symptoms. It excellent for sleep. it should be Indica. Sinemet can be used with less amount. works longer.The more THC, the better. No "high" ever. only needs to be right amount for every person, but it should be tailored for everyone personally. It should be bought in dispensary, for good quality.Sorry for my English, it is my second language. There are a lot of info in Internet, Youtube. Watch it. Google it like " parkinson and marijuana , Youtube.
Dementia care Central has an outstanding article on CBD oil for PD. Very encouraging! Also read on Projectcbd.org CBD and Parkinson’s disease. I have done my homework and trust me that there are a lot of cheap poor quality CBD oil out there, and is a waste of money. I use happyhemper.com. I called the Distributor/owner of happy hemper with you in mind and she recommends the gold label oral applicator. It’s expensive but the best and highest potency that she has. She would like for you to start out with 3 g for a week and if the symptoms Improve, then bye The larger one. When you go on her site to make your purchase there is a space to write a message. Please let her know that Mae Referred you to her regarding PD. There is also a contact us Icon on her site. She is outstanding and knows her stuff. If you want to talk with her she will make an appointment for you over the phone. I hope I have answered all your questions. If you should get stuck along the way and need assistance let me know. But I believe her site is user-friendly and she answers all of her messages And I wish you the very best. Mae
Do not give up on the project of switching yourself over to the slow-release Madopar. It will give you a much smoother ride without the violent transitions between on and off.
It sounds like you are in England. I do not know what social services are available, but if there is any way you can get someone to look in on you from time to time that would be a blessing. Perhaps some of our other members here will have some ideas.
Thank you for such a kind reply. Ì know I have to make changes. It's a bit of a challenge accepting that instead of a well person with the occasional problem every part of my life is now compromised by PD. We always think it won't happen to us!
I'm sorry to hear of your problems. I think your symptoms are likely to be the result of under-medication. This is fixable given the right medication. You should see your neurologist to suggest an alternative drug regimen. If a doctor is not available, you may find the app below useful. It works out your expected levodopa equivalent levels during the day.
Thank you very much for such s helpful reply. Ì hadn't heard of the app you mention - it looks fascinating. Ì do think we're all a bit scared of l-dopa overdose because we have it dinned into us ftom day 1. I'm switched on at the moment so I'll get onto the site and see what it says! Thank you again.
Thank you. Together with other informed and helpful replied you have given me courage to experiment further with adjusting and increasing my medication. Ì am.so grateful.
good evening pen how are you doing i just fed the the dog, cat. and not long afterwards ill watch a movie,, way, not sure what movie o well thats all for now enjoy your holiday,,,regards john.
Have you tried Parkinson's UK? They can advise on both medication and applying for social care. If you send your post to their online forum I believe they will respond. It sounds to me that you need to even out the troughs without increasing the highs (and risking dyskenesias). Your current schedule looks designed to do that - has it worked in the past? Your neurologist / Parkinsons; nurse could advise on adding extended release systematically to the mix - but you might have to reduce the IR.
I have been on Madopar 125 since 2005. Really good for first 10 years then a bit of Dyskenesia and Dystonia crept in , I wasn’t having as long being ‘on’ ,very dizzy ,numb, so resorted to increased Madopar. I too researched and went on to an injection weekly of Exenatide not prescribed for PD but was trialling in USA for PD. It is available here only for Diabetes but my Neurologist was happy for me to try. I have to pay for it. I thought it was helping as my symptoms didn’t escalate but also wasn’t marvellous. Then a new drug was put onto our PBS scheme for PD and I was one of the first to apply for it as it hadn’t even dropped into my Neurologists ‘in’ tray so to speak.This was about 3 months ago. (As I’m still in bed I can’t think of it’s name). Since then though the Dyskenesia had grown to such a violent situation that I simply had to reduce the Madopar to reduce the flaying arms and torso. Neurologist said I could play around with doseage. I don’t think he meant ‘reduce’ but I did and so happy I have. I’m starting 1 x 125 about 5.am have another about 9.00am another about 2 or 3 in the afternoon. About 7 or 8, I go to bed
deliberating whether to take another or not. I’m fine with my upper body....my feet by then have refused to cooperate so I usually take another Madopar. I used to take 2 x125 at each session. I know I’m much better as the dizziness and numbness has gone, I get very little Dystonia (and that plagued me daily on rising out of bed ,) However I still have Dyskenesia within 1/2 hour of Madopar but not as violent. (I used to move the chair I was sitting in).
I still don’t roll over in bed as easily and getting out of bed after 7/8 hours sleep is slow going. Today I had to use the bathroom at 3.00 am. I stay up then doing just what I’m doing now. Come 4.45 or 5.00 I’ll take just 1x1.25 Madopar and within 20 mins I’ll be feeling really positive. Getting around the house doing usual chores.
Now here’s the conundrum....I still have Falls. Whoea over I go with no warning. Last one 3 weeks ago resulted in trip to hospital and stitched up. Have never broken a bone but black eyes over and over.
I’m alone as husband died last September.
My GP has been on my case to have help so Im waiting to enter a Nursing facility . The amount of Paperwork is overwhelming. I know I’ll be living a more secure life. I don’t want to break a hip or leg or my neck.
This place I have chosen is so new the paint has barely dried. It’s so personal too. Sure there will be regulations but only for my safety. My space has my own patio complete with outdoor furniture, en suite bathroom , built in writing desk. The overall benefits must be conclusive to my happiness. There’s a Library or Theatre to escape to, a Coffee Shop or maybe I’ll get my Hair styled in the Salon.
My PD definitely has changed my life . I can handle it though. Once my feet obey then I can Dance.
I still don’t know if the weekly injection is helping or this new drug or a combination and I wont know until I come off them. I will try that once I’m re settled.
I’m 72 but look 10 years younger so Im told.
As long as I don’t regress I can handle it. Never considered DBS. Gladly give Cannabis a go but no contacts. Im Australian. When I can get to kitchen where most meds are I’ll send through the name of this (new to me) drug.
I get lost with these Forums and finding my way back could be confusing.
Firstly, my pd profile is almost the same as yours, you can tell your Neuro someone else suddenly crashes and feels like they're dying only to bounce back an hour later. These crashes are due to the medication levels suddenly dropping, crucially they can cause anxiety/depression, apathy etc. Mental wellbeing is critical. Most of my physical symptoms are due to this. We are, in a very loose sense, being thrown into a 'withdrawal' type of situation, hence we feel so ill! I was on ropinirole and stalevo with a total L.dopa equivalency of 1200mg per day. All it did was make me have anxiety attacks and be violently sick. Now I'm on about 960mg per day with sinemet cr and less ropinirole, Considering the drop in total dopa-juice it's strange that while no better overall I'm no worse but have no panic attacks or vomiting, which alone is worth the asking price.
Is there a reason for madopar? Maybe trying a slow release formulation (if not already) to try establish a baseline level, or stalevo (not everone has probs) this formulation gives more bang for ya bucks, its comt inhibitor means a 150mg tablet gives say 175mg (the app john mentions will tell you exactly) plus it's regarded as more stable, so less ups/downs.
I'm considering trying stalevo again but on a lower dose to avoid the nausea.
Finally, 3 x 500mg solgar B1 hcl has transformed my mental health in an incredible way.
Hey Pen 1, thanks for sharing and for your courageous efforts. Never give up.
motor symptons really improved with my mum with Symprove which she's currently in month 2, also fast walking has massively improved her mood and posture etc.
She suffers from very extreme dizziness, and still trying to get the med balance right. Trying vestibular exercises and also encouraging her to do diaphragmatic breathing, which is known to treat her anxiety, which sort of goes hand in hand.
Thank you for your reply. Ì took Azilect for years and lsdt yesr switched to safinamide (xadago) which had just become available in the UK. It's the same class of drug - MAOI (B) but evidence suggests has a Neuro protective effect. I've tried all the various supplements over the last 16 years- many suggested by kind people on this site which i really appreciate . Ì was lucky to get nearly 15 years before PD really hit me full on. I'm just being greedy wanting more time! I know many people are struggling after only a few years and my heart goes out to them.
Very interesting idea to crush the madopar and sip. I've always thought that a constant input of l-dopa would be so much better than much bigger amounts every few hours . The 2 pumps available are unbelievably crude. Ihavve a friend whose diabetes is controlled using a very sophisticated pump. I know we're talking very different pathologies and processes and I'm not daft enough to think the insulin pump could magically be Adapted for L-dopa but i can't help feeling that because PD is perceived (Oh, so wrongly) to be almost a natural result of becoming very old it doesn't attract either the research funds or the researchers that other diseases do. Ìll certainly give your idea a go- much appreciated.
There is a company that has a method similar to the diabetes pump system for c/l in clinical trials, but it seems to have stalled. It was an Israeli company called Neuroderm. They were bought by a Japanese company in 2017 and nothing since then.
Thanks so much for this. I've not heard of ultra sound therapy. Ì suspect it may not be available yet in the UK but I will read up about it and ask my consultant about it when I see him and his team next month.
Don't give up! I'm sorry I can't offer any advice on this but there is so much knowledge and support on here that I really hope you find some answers. Best wishes to you.
Pen, I am sorry you are going through such a bad time.Being alone doesn't help either.Why do these doctors play God? If he can't help you anymore why doesn't he refer you to another doctor who maybe knows more than him and CAN hel you.....Lois
I'm overwhelmed by the number and kindness of all the replies I've received to my post Losing Hope. There's so much information, so many knowledgeable and thoughtful people out there and so much goodwill. This site must surely be one of the best resources for increasing the understand g of PD.
Is deep brain stimulation an option? I was desperate and suffering last summer and had the surgery at the end of November. I am taking no medication and doing quite well.
You should try to see a movement disorder specialist if there's one near you. They are better equipped to deal with PD than a general neurologist and far better than a PCP.
I suspect you are actually over-medicated. Standard synthetic / chemical medications never made anyone healthy.
I'm all for trying natural / nutritional medicines like Vitamin B1, CBD and Mucuna Pruriens, which can have beneficial health effects as well as getting you 'on' again. Mucuna Pruriens powder - a ground up raw bean with high levels of natural levodopa - has been used for centuries by Ayurvedic doctors to treat Parkinson's Disease. It proved to be a life saver for my husband when his standard PD medication stopped working altogether a few years ago.
He was diagnosed in 2004. There's a very long story leading up to him trying Mucuna Pruriens powder, but suffice it to say that standard PD medications always caused him terrible side effects and became less and less reliable as the years went by. There was little information online about Mucuna, so we set out to experiment with it ourselves. We started with him taking a teaspoon of Mucuna, but it didn't do anything, so we gradually increased the dose until at a tablespoon of powder (mixed in a little water) he was suddenly 'on' and moving freely.
We charted how long he was 'on' with each dose and eventually worked out that he was very reliably 'on' for around 3 hours per dose. Each dose would also get him 'on' in only 5 to 10 minutes. He gradually swapped out all his synthetic PD medication (Stalevo, which is levodopa, carbidopa and entacapone) for Mucuna Pruriens powder, but we noticed the MP soon wore off quicker in the afternoon. So he added back just 2 tablets of Stalevo - 1 upon rising and 1 mid afternoon - because the carbidopa element in the Stalevo helps the natural levodopa in the Mucuna cross his blood brain barrier.
Mucuna contains beneficial fibre and nutrients and is said to be neuro-protective. We have not detected any negative side effects, even though my husband takes a bigger dose than we've ever seen recommended online. It's a bean after all, so his body just absorbs it readily as food.
For us, Mucuna has been the best, most reliable and beneficial treatment for my husband's Parkinson's Disease by far. Every day for more than 3 years he has known he will be reliably 'on' soon after rising and he'll be able to stay 'on' for around 95% of the day, with no nasty side effects from this natural ground up bean - Mucuna Pruriens.
For anyone suffering the side effects of synthetic levodopa and other chemicals in standard PD medications, we recommend giving Mucuna Pruriens powder a try. My husband has had PD for more than 15 years, and though it has progressed a little, the last 3+ years have been the easiest because of Mucuna. We live in the UK and usually buy ours from Detox Trading. I hope this helps.
I have learned that adding matcha green tea powder to each dose of the mucuna bean powder that I take extends the effectiveness of the dopamine absorption across the blood-brain barrier.
The amounts needed will vary from one person to another. The quantity i use seems excessive but it has worked well for me over the past 6 months, and I only use it before going to bed each night. Into a cup of hot water, I add about 3 tablespoons of the mucuna powder and about 1 teaspoon of the matcha powder, and some sweetener to taste. Sometimes I also add a little cocoa powder, for variety. I suppose any powdered fruit could be used to enhance the flavor, as long as there is no dairy component to interfere at the receptor site.
You will need to experiment to discover what amounts will work best for you.
Thanks tarz. My husband has become mostly vegan to avoid all animal protein, so that isn't a problem for him.
Are you taking the whole 3 T mucuna powder with 1 t matcha powder in hot water at night? Or are you making that up for a number of doses for the next day? If that is just one dose, how long do the beneficial effects last?
My husband (diagnosed 15 years ago) takes 1 T mucuna powder in a little room temperature water about every 3 hours throughout the day (total 6 T mucuna). We haven't heard of anyone taking that much in total before, but it has never had any discernible negative effect on him. However, if you're taking 3 T mucuna in one dose, that does seem a lot, especially at night. The first time my husband took mucuna it was at night (1T), it made him twitch and jerk all night long. He slept through it, but it shook the bed so much it kept me awake.
I think we'll try making up a cup of matcha green tea using 1 teaspoon in boiling water, but use it cooled down in place of water to make up his 6 daily doses of 1 tablespoon mucuna powder. Hopefully that will take the place of carbidopa to get mucuna's natural l-dopa across his blood brain barrier.
Thanks for this info. Been PD for 3 years+.Unable to see anyone in the neuro team for 18 months due to staffing crisis . Most of time I have managed the condition ok though, like most Parkies I have been up and down, over and under medicated.I now I feel I would like to try the bean route and have help with diet and alcohol. I think I am getting to a place where I only feel “myself “ after a couple of glasses of wine which can’t really be a good thing , or can it ?
Hope folks feel like commenting on this my first post
Struth B. Wish I could enjoy a glass or 2. I have had my companion since 2005. 10 years were blissful and had me thinking this PD is OK . What’s to worry about the diagnosis.?
Then it started to creep in. Can’t move my feet, Dystonia, dizziness fuzzy , face feeling numb, cant roll over in bed, incontinence , Dyskenesia. The latter being the most devastating for me. It had compromised my shoulder to the extent of needing injections for pain relief. All this time on Madopar, Sifrol .
I have this personality where everything I do has to work immediately so the 4 years have been tough. I dropped my daily dose of Madopar to half in the belief that less of that equals less Dyskenesia. It is working and mobility isn’t compromised, confidence improving and all this only about a week ago. Mind you during this time I’ve tried everything. Exenatide Injections I’m still on and now Safinamide has been added. So what has contributed to me feeling very positive to this very minute ? I don’t know. I’m just continuing on this path until my condition suffers a hiccup and I’m on the research trail again.
Its come to me that I have to try what my body and mind is telling me, with the knowledge I have been able to glean from the Internet.
There are a lot of good ideas posted here about treating the symptoms of PD, in response to your plea, but don't forget that there are also many good ideas for reversing and potentially curing the entire condition, which can be found posted in other places on this website and at other internet websites, as well. So, as you find effective ways of dealing with the symptoms, don't forget to continue researching and experimenting to find the cure that will heal you. The body is designed to heal itself, when given the proper tools, however, it appears that the brain requires more time to do so.
My husband stooped too and although in his 60s he looks 80s now. Recently we went to a Physio while on holiday in malaysia and he used a ems machine. You can run this machine like 20 mins on any part of your body and it activates your muscles and it helps. He said there is a little more strength in his limps and his neck muscles now. I have been working on his arms and neck so far as i am trying to get his head back up.The ems machine is not too expensive to buy. It costs me 39 pds in the amazon .if its aching i would run tens but tens is only temporary..
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Is this progression normal
Medication Question
Any suggestions for managing this kind of dyskinesia?
