I have been taking sinemet mostly since the start after trying angst which was awful.
5 weeks ago I started waking up sick throwing up and a banging head. After 4 weeks of this I decided enough is enough and dropped all my meds. Here I am tremor a lot less and no headaches. I was advised headaches could be caused by codeine.
I just spent another £350 on a neuro who advised my sinemet dose was far too low
And I need to increase it slowly to over double what I was taking.
So now what should do I feel so much better. Main issue now is fatigue comes and goes.
????
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Theyakin
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One thing you can consider is the use of high dose thiamine (HDT) or vitamin B-1. It is compatible with all standard PD meds and has shown the potential to significantly slow or halt disease progression and being as you are relatively newly diagnosed with minimal symptoms, it may be worth your consideration. If started early enough, it has shown potential as a stand alone treatment.
HDT has also shown synergy with multiple levodopa products and some members have reported being able to lower their levodopa/sinemet/rytary/mucuna dose when they have added HDT to their regimen.
Here is a link to a reference page that should answer most if not all of your questions about HDT:
I have not used mucuna oil so have no experience to share, but other forum members have used different forms of mucuna to good effect in trying to reduce PD symptoms. You should be able to use the search function on the right top corner of the page to search mucuna on this forum. There are likely hundreds of posts on the subject. I think like everything else PD, it works for some and not for others.
Thank you for this reply! I have cut and pasted your post to the following very long thread where people are posting their results from HDT. I pasted it there because that thread is heavily followed and will help maximize exposure of your post in the hope that more people who are relatively newly diagnosed might see it and be able to get great benefit as you did, plus the advantage of now knowing that you have likely very significantly slowed or halted disease progression at such an early disease stage! Congratulations!!! :
I was diagnosed last Sept at 48, didn’t want to start meds so researched and found so many PWP benefiting from B1, I started taking it in November, 90% of my symptoms are gone. I had finger tremors, stiffness in my knee/neck, constipation, balance issues, waves of fatigue and loss of mobility in my left hand/foot. I take 1gm/day on my own.
Thank you again for this reply, more useful information!!! I'll add it right now!
Would it be possible for you to add information about how you arrived at your optimal dose and how long it took to find it to the following post where members discuss HDT dosing to share with others who are searching for their optimal dose?
He is taking one gram per day which is equivalent to 1,000 mg or 500 mg before breakfast and 500 mg before lunch. The earlier in the day dosing has helped some PWPs with sleep issues while he has reported that late day dosing may interfere with sleep in some people.
Is anyone familiar with Nucleo CMP Forte? It's a non-US approved nucleotide, good for a lot of nerve pain disorders that also shows promise in slowing down PD symptoms.
Have you looked at trying mucuna, my husband is your age, he still works full time, physically active, tremor dominant, he takes Barlowes 40% capsules 1capsule an hour before breakfast and another an hour after lunch, he takes it with or without green tea or green tea extract (carbidopa alternative) and it works the same each time. Yesterday we started him on taking two capsules am & pm and he felt really good. Today he is travelling for work, flying/meetings etc and his day started at 4am so he is having three doses today, 4am,9am and 2pm. He also takes ashwagandha 1 capsule am & pm with the mucuna, this really helps with stressful/anxious feelings for the whole day, this last week he also is taking L theanine half an hour before a meeting or stressful situation like checking in at airports etc and he says it makes him calm and is not bothered by things that used to bother him. He has been on B1 since Nov but is currently stopping for a month as he has hip pain that we can't relate to anything, have tried 2g, 1g and will trial a very low dose, say 100mg 2x day once his month break is over. We tried a couple of 15% strength mucuna earlier on and they don't compare to the Barlowes so we are sticking with this regime for now. My husband was also started on a dopamine agonist, pramipexole, was on it for 3 years ending up on highest dose per day, tapered him off and he stopped that in Dec, and he's feels so much better in himself being off that. If my husband was elderly, sure we'd probably go the sinemet route (maybe) but you and he are still young and from what I've read and seen (I am a nurse) the roller coaster of pills you can end up on is scary, and for how long will sinemet give you relief? without side effects overriding any benefit? i know everyone's PD is unique, the cause, our lives, support network etc, work,family etc ,,get as much info as you can and make an informed decision, your neurologist is not the only source of info, sometimes you need it straight from the horses mouth so to speak , e.g actual people using alternatives and those using pharma drugs then weigh things up. Like I said earlier I think it's a different kettle of fish being 47 compared to 67 and diagnosed with PD. Best wishes.
DO RESEARCH... my wife has been on sinemet for 10+ years and often wishes she did more research and tried other options before sinemet. Easier to stay away from it in early PD before you get "stuck" on it. I don't know how else to put it.
Sinemet and other levodopa products such as mucuna are all strictly for symptomatic relief. Sinemet is less prone to cause nausea than straight levodopa, but as your experience demonstrates, it can indeed cause nausea. Since you feel better without it and it is strictly for symptomatic relief, you have your answer - look to other substances for help.
Try Hardy’s daily essential nutrients and add extra b1 a bit at a time to find the correct level. The DEN has a whole range of ingredients, many of which are taken individually by people on this site. It is convenient to have everything in one supplement and it is mixed in a ratio that they have been testing for 15 years. Read up on it on their web page. It has made a big difference to my husband’s energy levels and mood.
He has been prescribed 3x2 sinemet per day but is just taking 1 in the morning which he reckons makes no difference. The Hardy’s made him feel so much better in 3 days. See my profile for the full list of what he is on,
. Maybe some of the others helped but the big difference occurred when he started the Hardy’s DEN. He is 58, diagnosed a 10 months ago and been through a really rough time with anxiety but this combo has made him feel better than he has for years.
I would be surprised if it had taken so long for those “side effects” of levodopa to become apparent. That type of side effect would become apparent much closer to the initiation of levodopa therapy. That your PD symptoms are better without levodopa might point to an issue with diagnosis. Have you been seen by a movement disorder specialist? If you can get to London, a referral by your GP to the National Hospital for Neurology and Neurosurgery might be a sensible step.
The issue of initiation of levodopa has been raised in this thread and this may be of interest academic.oup.com/brain/arti...
Thanks everyone what a great site and great people on here.
I have seen a movement speacialist (when it was not cancelled on the NHS)
And after a dat scan showing loss of dopamine and having a right side tremor and a small involuntary movement with my head they said I have pd. As i said my tremor is less now, no headaches and clearer with my thoughts after stopping the drugs
Check with the Neuro about being part of the SPARK trial. It is an international Stage two clinical trial of an anti-body named BIIB054 that dismantles the protein clumps associated with Parkinson’s. They’re looking for people diagnosed within the past few years who aren’t on medication. Good luck!
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