I’m a PD warrior on C/L who can sleep fine as long as the l-dopa is where it needs to be. That means a dose before bed and then 3- 4 hours later a “wake-up” call for another dose. Yes, I just wake up just like that, and if I wait long enough RLS will kick in. A dose then will get me down for the rest. Part of me is thankful for this, but is there anyone out there who has learned a way to conquer this? BTW, the 50/200 ER does not work to get me through the night..
Thoughts welcome!
Gets me through. ER 50/200 daily 7am, 7pm, 1am.
Hi RoyProp!
What should I do if my blood test show too high B1 and B6?
Dr. Costantini had be on 4 /500.mg tabs 2x daily. Any ideas?
Without HDT Parkinson's will progress.
interpreters,
Dr. C has stated on multiple occasions that most of his patients test in range for B-1 before starting on HDT and then once they start on HDT, they test "off the charts". The problem seems to be that there are normal serum levels, but tissue levels in some areas are not enough. HDT apparently is able to get more effective amounts of B-1 where it needs to be.
Art
Thank you for your comprehensive reply!
what is 50/200 ER?
what is RLS?
What happens if you take a larger dose at bedtime?
Hi if I take the second. Sinamet at 4.00 I manage good nights sleep, but just as important to me when I do get up usually 8,00 ish my neck is not hurting?,. Yes i tried sleeping pills, it seem like nothing will help me sleep though. Next visit to my neorologist I will try to get. 25/100 sinimet. Cerian
hi tryguy well i take 4 madopar 200/50 every day 1 at 9.30 am the next at 2.30 pm one at 5.30 pm and one at 8 30 pm thats it and i get a good nights sleep well at least 6 hours sleep some times 7 hours but then i exercise every day and very tired i have had pd for at least 6 years regards john.
Nice pun but probably unintentional. “RLS kicks in”!
PD has not improved my low threshold for humour.
I take Siphrol 2.2 mg ER an hour before bedtime to manage RLS, Sinemet 50/200 CR when turning the light off and Stalevo 100/25/200 at 4:30am. The 4:30 dose reduces stiffening and helps me start the day in good shape. Stalevo every 3 hours completes the cycle. Working very well in combination with PD Wartiors.
I have the same reaction as you TryGuy! As inconvenient as it is, Its almost like an alarm clock. 3AM dose of 3 25/100 Sinemet and (if I haven't been bombarded by my brain and the current political issues, or some other thing I know I can do little about) I return to sleep for another 3-4 hours. The C/L product I reluctantly tried again recently (for a new resident Neuro I'm training) was as bad as I remembered. It was almost like taking nothing! CBD oil (with a % of THC) has been my greatest stablizer .
Tryguy, This is what I need to do as well. I've found myself dosing according to my body signals...not so much the strict schedule my neuro started me with. I was diagnosed last June. Thanks for posting.
No, I am not on amantadine. At one time I felt that my RLS was due to Mirapex withdrawal. I eventually figured out that NO dopamine =- RLS for me, like clockwork. Unfortunately the clock works at around 4am..
I am only on C/L and 5mg selegeline /day.
You might want to consider adding entacapone to the C/L or using Sastravi (a combination of all 3).
I can imagine the comments on this, however if I have had success with something I feel I have a responsibility to share it.
I was diagnosed with Parkinson's approximately 7 years ago. A series of DAT scans confirmed the shortage of dopamine in my brain. I was started on Pramipexol and titrated up to 150 mcg.
2 years later I was diagnosed with ADHD. Right away I saw the connection, they are both dopamine loss related. I started to study both, because it seemed logical that medication given for 1 out to be efficacious for both. I looked at two of the main ADHD medications, methylphenidate and dextroamphetamine, and found that both helped the ADHD with the dextroamphetamine doing a slightly better job, at least for me Neither seemed to do the job I expected with the Parkinsons.
Upon reading the stuudies and reports I began taking both medications together. That was the trick because 1 causes the body to produce dopamine and the other slows the re -uptake of it, causing it to remain in the system longer. I was able to wean myself off of the pramipexole, which has horrible side affects and do with just the stimulant combo to combat the Parkinsons. I went two years with that combination and then took a big gamble. I wasnt comfortable with the side effects of the dextroamphetamine/methyphenidate combo and personal experience earlier in life as well as several studies showing methamphetamine to be 5 times stronger with 1/2 the side effects led me to try that by itself. My whole body responded to this. My variable blood pressure settled down to a reasonable average of 105/60. My gastroparesis went away. I have been on it now for 4 years and have yet to experiernce a a single side effect
Hi Audioman
Very interesting. I think you should do a post by itself on this because this is burried and wont get much attention.
My son was diagnosed with non-hyperactive attention deficit disorder when he was 8 (now 32).
When I was diagnosed with PD in 2017, I remembered the dopamine deficiency similarly.
There are alot of very knowledgeable membres on here. Maybe one can explain some more.
Although methamphetamine seems more damaging than good for pd, dextroamphetamine/methyphenidate should be interesting for pd... I wish someone would share if they have any more info on this.
I am in no way promoting the use of methamphetamine. I am merely reporting what is currently working for me and how I arrived at it. It was a surprise to me as well. The belief that Meth was more dangerous came from overthinking the knowledge that it is 5 times more powerful. When I'm studying a medicine for possible use I dont rely on doctors or pharmacists. I try to find the studies which were done inorder to have it accepted. If fthere is still any doubt I dig up the studies as it was being designed. It is reputed to be 5 times more powerful and at the same time it has 50 percent fewer side affects at the same dose as the dex. The methylphenidate dose stayed the same but I cut the dosage in 1/2 on the meth to have the same result. I made the decision actually based on the low level of side affects. Unfortunatey the warning still applies: one of the few side effects it does have is its about 30 percent more addictive.
But here is some food for thought : If you nee a drug to suustain your life and you are going to have to take it until your end, what does it matter if youu become addicted? At least you wont miss your doses.
interestingly, Selegiline, an MAO-B inhibitor prescribed for PD, is metabolized to amphetamine and methamphetamine metabolites. Gave me horrible migraines though.
Did anyone start treatment taking a dopamine agonist?
Wake up with light flashes in eyes
Who wakes up “on”?
Rethinking Parkinson’s Disease: could dopamine reduction therapy have clinical utility. (The article)
