This is wiping me out. Honestly. It tends to start at about 5 pm and lasts for about 2/3 hours. I used to take Whey protein to counter it but this appears to not hit the spot. I’m utterly exhausted when this phenomenon strikes and am wondering if anyone has any ideas? I take B1 daily (Superior Source under the tongue 100 mg, a B complex, Magnesium, Cod Liver Oil, Turmeric, B6, Resversatrol, L Carnatine, Alpha Lipoic Acid, Green Tea Extract and Spirulina. None of them appear to be helpful as regards this disabling symptom.
Thanks in advance gang. 😊🤷♂️
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jeeves19
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Worst thing to take in any form is sugar and fructose, the cause of Insulin Resistance.
Loved my cakes, didn't like my beer belly, went on 'Low' carb diet ( not keto, faster but harder to keep following) Went from 14st 3lbs to 12st 6lbs, slow but sure.
I ask because I was subject to such extreme bouts of fatigue until I went Keto and Two Meals A Day (TMAD), then no more fatigue, my energy progressively came back and brain fog greatly diminished. I still have asymmetric tremor (right hand, right foot) and Restless Leg Syndrome (RLS) and heightened anxiety, but I'm learning to live with it.
On this side of the pond, we have these little shot drinks called, "5 Hour Energy" which can definitely boost your energy, but I don't think they have these on your side of the pond. Here is a link to what they look like :
If you don't have a similar product available with the same or similar ingredients, then you might try coconut oil or MCT oil as this can also give an energy boost in some people. Here is a Cleveland Clinic article link discussing the energy boosting potential of MCT oil :
If it begins after dinner try digestive enzymes, that has helped my husband with some of his fatigue I think his digestive system is slower and body working harder.
I’m having the same problem. It started at once a day around 3:00 PM. Now it’s coming on around 11:00AM. Both times are about a half an hour before my meds. (25x100 C/L) x 2 with Entacapone five times a day. It comes on suddenly and I experience complete fatigue, and whole body weakness, fuzzy vision , brain fog and sometimes nausea. I have to lay down immediately and usually lasts at least an hour. I don’t have a headache but my brain feels like it’s overheating. Nothings different lately but if it goes on I’m going to have to see a Doctor. My MDParkinsons doctor is hard to see. Only one in the area.
why are you taking Entacapone with so little CD/LD
Entacapone is an antagonist that helps the CD/LD last longer and is usually kept for the end when the length of the CDLD affect is only 2 to 2.5 hrs and you are taking LDCD every 3 hrs
I didn't know that about Entacapone. I take C/L 25-100 three or four times a day and my MDS prescribed Entacapone with the direction to take one pill each time I took my C/L. I tried this and I became extremely exhausted and light-headed. It was awful. Are you suggesting that this was too much? I stopped right away. Then I waited a while and I forgot how bad it was, so I tried again. The reaction was just as bad. Do you think I didn't give it enough time or did she prescribe me too big of a dose?
Taking it for just that reason. The c/l isn’t too much and it makes it last longer. I do my meds 4 hours apart. 7-11-3-7-11. Works for me. I hadn’t considered the Entacapone might be a problem.
I disagree with the characterization of entacapone being heavy stuff to be saved for the end. What it does, from Wikipedia: en.wikipedia.org/wiki/Catec...
"The therapeutic benefit of using a COMT inhibitor is based on its ability to prevent the methylation of levodopa to 3-O-methyldopa, thus increasing the bioavailability of levodopa. COMT inhibitors significantly decrease off time in people with Parkinson's disease also taking carbidopa/levodopa"
"Peripheral COMT not only reduces levodopa concentrations, but its product 3-OMD also competes with levodopa in terms of blood–brain barrier transport and CNS dopamine uptake, and thus worsens motor function...
Randomized, placebo-controlled studies of entacapone in PD patients with motor fluctuations showed an increase in ON time, a decrease in OFF time, a reduction of daily levodopa doses as well as improved UPDRS motor and ADL scores. "
you are correct as usual, I was basing the comment on my own experience which has influenced my opinion of Entacapone and I wrongly applied that to others. The world is divided into two groups, those that can tolerate it and those that can not. I have known for many years that I am "allergic" to COMT inhibitors. which means that I stayed away from them as long as possible but now there is nothing else and I may have to take it anyway. My personal reaction to them is first I start seeing things that are not there, and then that evolves into full blown hallucinations, seeing, smelling feeling things that are not there. Then after a couple weeks all my muscles start to hurt and every day it gets worse, then the muscles have no strength and if I continue to take it (reason maybe I can get usd to it) then after about 5 weeks it is too much pain and that is when I discovered that if I have been taking it for 5 weeks it will take approximately 4 weeks for my reactions to wear off.
I don't find that correct for everyone Gymsack. My husband has been on Comtan (Entaca) for many years to extend the med and it works well - he gets around 3.5 to 4 hrs out of his meds and doses every 4.5 to 5 hrs.
Have you had your Testosterone level checked?. I used to get fatigued until I found my T-level was low. I am now on T replacement therapy and it has greatly helped.
Have you had your b12 level checked? Mine was low in spite of getting plenty in my diet so obviously my gut was not absorbing it well. I do injections every two weeks now.
I had episodes of fatigue almost daily requiring one to one and a half hour nap every day.
I was taking regular generic C/L4 times a day 50 mg carpet/200 mg. I switched to brand-name. Rytary . It is extended release format. Now I have no strong desire for naps in the afternoon. Big improvement, changing the brand drug.
Art's input about the "little shot drinks" reminded me that in addition to Keto and TMAD, I also began William Curtiss's protocol based on beginning the day (at 04:30 AM) with Bullet Coffee. All in all, it seems to power up my engine and keep it going all day. Hope this helps.
I remember read an article that say the lowest point of dopamine is around 3pm. With PD, that's why you feel fatigue around that time. I would try to adjust ur time to take the CL around 4 to 4:30 to boost up ur energy at 5pm. Hope it helps!
I have had this far too often, I was sure it was a result of taking b-complex. However, I remember feeling this in the past and it was often a result of carbs. What do you eat for breakfast/lunch on the days it happens? How is your mental health? You exercise every day, do you take a rest day? Have you tried a 24h fast?
Good thinking. I need to be more businesslike re. my approach to this. Keep records etc. watch what I’m eating and be conscious of exercise. I might try the short fast but still imagine that no energy + no food coming in could be tough?
But at least the fast would be only a few days at the most. Martha Carlin (Sugar Shift creator) said her husband, John , did ProLon. A Fasting Mimicking Diet (FMD); in other words: it mimics a fasting state, but you are able to actually eat something. You purchase the kit and eat only what is in the boxes they provide. My bf has PD and he did it once, it improved his energy for a bit. I have an auto-immune disorder and at one point was so fatigued that my rheumatologist suggested it. It really helped me. It is typically suggested to do more than once, weeks apart, under the supervision of a doctor.
What !! You're not taking records of how things are going 🤣🐰 Naughty! Time for you to be put on Bad Santas List. 🐰How about trying to drop some or all of those supplements... gosh that seems a truck load to me. But that's me. My husband uses zero supplements. Actually gosh I tell a lie. Colace for digestion.
Hi Jeeves, Maybe you are missing something. When I read your text something immediately caught my attention, 100 mg B1 Sublingual it's a very high dose, and extreme fatigue is a sign of B1 overdose. And the sweet spot tends to lower over time. So before switching anything else I would make a 2 weeks break on B1 and see if they were any improvements. Good luck.
I am trialling B1 to find the right dose and recently over dosed. The fatigue was extreme. Took the two week break, fatigue went away, have started again at a lower dose. Hope you work it out!
I also noticed the high b1 and was thinking the same thing. I thought I was declining and then I realized my b1 might be too high. I took a break from b1 and bounced back. B1 is extremely sensitive. I also take the Sublingual form. Right now I am down to 1/4 of a pill, 25 mg. 2 times a week and feel I'm very close to the sweet spot. I think it's worth taking,it just takes patience to find the right dose.
Same extreme fatigue happened to me last week. Figured too much B1. I started 2 years ago with 1 sublingual, then down to 1 every 3 days, now on a break, fatigue has been relieved.
Jeeves it seems you are taking too many vitamins...always remember anything we put in out body..body requires energy to digest, so I would suggest cut down what is excess and keep your gut healthy by drinking luke warm water instead of cold water, it will help you trust me
Hi Jeeves, followed your journey from afar for a long while now. I know you had DBS last year (abouts) and reported early successes. A few questions and sorry if too detailed or personal, which DBS targets were hit, dual STN or GPI or other/combo? Was levedopa reduction a goal? Do you know if your stim settings from initial to now have changed lower or higher? I think you have the Medtronic Percept device, have you had a recent "OFF" sensing session to see if your underlying PD signals have changed either in peak location and/or intensity? I am a caretaker for my wife with PD and she also had DBS/Dual STN/Percept and your journey helped us to proceed with it. We are several months behind you in the timing of it all, we found early success too, but as honeymoon of lead implant wore off we found she was creeping back up in PD symptoms and medications increasing. Decided to do a decently OFF sense session and found her PD signals all in same locations but intensity was much higher than in honeymoon. She was OFF meds for about 6-8 hrs at sense timing after being on a 3 hr dose cycle. The stim was increased 2-3X intensity and became much more theraputic for her. Not sure if it will last but its been working very well (better than even the earlier honeymoon period success). Wishing you and all the others on here the best!
Hi. I think that we get less info than you do because we’re the National Health Service and we tend to get told things rather than being in charge (which is the natural consequence of ‘engaging a programmer’ as opposed to here in the U.K.). I think that I’ve gone up a bit on both sides. I had STN by the way. I was on 1.2/1.4 but following a consultation in March went up 1.3/1.5. My main problem has been my speech but they gave me a Speech Channel which enables talking. They don’t like me using this one though as it’s not as effective as the ‘Original Channel’ and they argue that swapping channels too often lessens the ability of the Original channel to bed in a really work. But I think this is based on their gut feeling rather than being based in science. Good to talk. Keep in touch by all means.
I can empathize with the lack of detail shared due to the NHS etc. I would try to be as OFF as possible for the next BrainSense scan when and hopefully if the Medtronic rep is with you. In my wifes case she went from around 1 on each side to 3 L and 2 R so it was a big jump. Other than the temporary ramp tingles, she did not get other poor effects. Sorry you do see that. Since she was OFF for that key session I gave her a C/L and within 2 hours she was comedically dyskinetic, so had to turn stim way down til that C/L wore off. Since then only 1/4 C/L here or there so big med reduction was possible. The Sense feature seems like a very powerful tool to take advantage of. We still have ability to tweak settings with our patient programmer, can turn down all the way to stim OFF, and up to 3.5/2.5 i guess and have played with alternate channels too, but mainly minor up/downs within same channel.
None if you are talking about just the act of speaking, getting a word from her thoughts yes. Of course everyone is different and I think it somewhat depends on quality of the implant procedure and the level of PD issues going into it. For my wife there is always a nuisance level of cognitive issues that were there before DBS, but physically the DBS is providing all that is needed and we dont get in the deep OFFs anymore that made all things much worse.
Fantastic post JBinAZ. It's one thing I keep reading on different sites how the Programmers will not up the stim or at least listen to the PWP as to how they are feeling and try different things or give them the ability to change themselves as we can. How interesting what you did with your wife's OFF sense session. Never heard of that before.
The first few program sessions after turn on they want patient off meds as much as possible. I think the issue is as the first few weeks pass and the procedure honeymoon period wears off the BrainSense data baseline will change. At some point later another off programming session would be a good idea. I could just see my wifes medication demand/problematic PD issues increasing again after a few weeks. We are fortunate to have a great MDS and rapport with the Medtronic reps in our area. The Medtronic reps participate in local PD events prominently and they really get to know the local PWPs and caregivers. I wish that were the case for everyone.
The frustrating thing about B1 is that you need to find your sweet spot to get the benefits. The B1 dose you are on is very high. (I take 12.5 mg every 4th or 5th day currently.). If it’s too high you will see no benefits and possibly get some worsening symptoms. One of the first benefits of B1 is losing your fatigue BUT you do have to be on the right dose. I always suggest to someone who comes to me, on a high dose of B1 and who is not being helped by it, is to take a B1 break for 1-2 weeks and see what happens. Often symptoms can improve during this break. Anyway, if you want my help just email me…
Wow did not understand sublingual B1 vs capsules. My husband has been taking100mg sublingual although he does not keep it under tongue for more than 3 minutes. I think we will take a break as I did not understand worsing of symptoms, it could aggravate his pain as well as fatigue.
Hí Jeeves I have little idea why and it's likely a placebo effect but when I am feeling crappy with low energy my Red light panel does seem to be helpful. I use a platinum LED biomax panel for a prox 10 to 15 minutes and after doing so many times I'll feel like I have more energy to get some s*** done. Good luck
Did you ever suffer from this fatigue before your DBS implantation?
Somebody mentioned talking about modafinil. But modafinil is for sleepiness, not generalized fatigue. Which is it that you would say you have, a more generalized fatigue/energy malaise, body tiredness, inability even to speak, or rather a more circumscribed sleepiness/wakefulness problem? And you say it is limited to a reliably specific period in the day?
I don't have time to read through all the posts, someone may have mentioned this already, but some people who did the broccoli seed tea protocol found a lot of relief from the problem of fatigue.
Well we're trying... At least try to answer whether this happened a lot before you have the DBS or since. That should be good for an easy yes or no. Might help you shortcut a lot of time running down things. Hopefully save a little time in the long run... maybe. I know it is trying, when people get engaged into an intriguing problem. Certainly there's no hurry, please don't feel too pressured. Nobody is going anywhere. Plenty of time, just be comfortable as you can. 🙂
Also it could be just PD progression I'm afraid to say. Just a thought. For my husband the progression seems to go in steps... nothing for months, even years and then suddenly a wake up call..... and it's a progressional step has happened. That's what the Neuro has always said when something doesn't seem to get better.
Are you taking NAC? Also, liposomal glutathione helps. Hubby stopped gluatathione (instranasal, Dr. Mischley's prescription) some time ago. He started taking liposomal glutathione (oral spray), along with NeuroNAC, a couple of weeks ago, and they really have helped. No naps, although he never wanted to nap.
Despe. Thanks but I’m going to suspend all supplements for a while at least and see if it makes a difference? Today is my third supplement free day and so far, so good although it might just be luck?
The human body works like a computer--gets confused and needs reboot! 😀 I have hubby off of all his supplements on W/Es. Don't know if it's psychological, but he does so much better when not on his supplements. Body needs to recycle all that it doesn't need.
The only thing you ought to consider is to take Vitamin C with your meds.
PS. Luck or no luck, who cares, as long as you feel better. Again, PwP are like snow flakes! What works for my hubby, it might not work for you,
I would recommend viewing Prof Bas Bloem’s “The Importance of Balancing Nutrition in Parkinsons Disease”. He stresses that high doses of B6 can be toxic and some supplements can be detrimental to your health, especially for us with Parkinsons.
I recently discovered that some brands of Turmeric have a high lead content, especially those that come from Bangladesh as they use Lead Cromate Adulteration to enhance the yellow colour of the spice.
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