Tiredness and sleepiness

[MColmenares]

First I was diagnosed with Parkinson's in 2007.at the age of 47. I'm now 59 while it has progressed I keep moving and fight through the stages. Does anyone else suffer from fatigue and or sleepiness? Doc says it's the meds. Is there a medication to counter act this?

[ccobroussard]

None that I know of. Just always thought that it was part of the disease. I was diagnosed in 2006 at 46 and have been fighting this for 14 years.

[MColmenares in reply to ccobroussard]

Thank you. It's just fustrating. And I don't want to spend my day sleeping.

[park_bear]

In my experience it is not the meds – at least not the ones that I take – carbidopa levodopa ER and selegiline. Selegiline may help a little bit with fatigue.

I watch dance music videos on YouTube to motivate me to get up and moving.

[pvw2 in reply to park_bear]

It's inhibitors that do that, not L/Cs.

[park_bear in reply to pvw2]

As I said, selegiline helps a bit with fatigue. It is an MAO-B inhibitor.

[pvw2 in reply to park_bear]

I should have mentioned dopamine agonists as separate from the inhibitors. It's side effects seem stronger, but still diminish over time.

[Xenos]

Hi, MColmenares,

If I go to the gym, or walking, it's better. Never goes completely away though.

I also drink a lot of coffee and it works - to an extent.

[MColmenares in reply to Xenos]

Thanks, but right now I'm looking at knee replacement on my left knee. It has nothing to do with Parkinson's. It's from an old injury. But as soon as I'm able to, I'll be walking for excerise!!

[LAJ12345 in reply to MColmenares]

It is amazing how many pwp have knee problems.

[Harleybob08 in reply to LAJ12345]

Me too

[pvw2 in reply to LAJ12345]

Quote: Prevalence by Age

From 2013 to 2015 in the United States

Of people aged 18 to 44 years, 7.1% ever reported doctor-diagnosed arthritis.1

Of people aged 45 to 64 years, 29.3% ever reported doctor-diagnosed arthritis.1

Of people aged 65 years or older, 49.6% ever reported doctor-diagnosed arthritis.1

cdc.gov/arthritis/data_stat...

[LAJ12345 in reply to pvw2]

So are you saying half the people over 65 have knee problems therefore half the PWP are likely to?

[pvw2 in reply to LAJ12345]

That's what the CDC says.

[bepo in reply to MColmenares]

Look at Prolozone instead of a knee replacement. That's what I'm doing. My knees are getting stronger every day. I was initially told by the doctor who invented Prolozone that it wouldn't work because my knees were too degenerated. The earlier you start with Prolozone, the better.

[Despe in reply to bepo]

Bepo,

How long have you been on this therapy and what is the cost? Thank you!

[bepo in reply to Despe]

Have been on it for a couple of years. If I had the injections every two weeks, I think I would have healed faster. Our doctor charges $100.00 an injection. You can feel the relief right away. We pay out of pocket. I also take glucosamine chondroitin, sulfate, and Bio-cell collagen II, which helps with the rebuilding of cartilage. I take curcumin to help with the inflammation. I work very hard to stay away from dairy which increases the inflammation.

[Despe in reply to bepo]

Thanks, Bepo. I have been searching for ozone injections therapy in our town. So far no luck unless I am willing to drive 2 1/2 hours away.

[bepo in reply to Despe]

We used to drive about 4 1/2 hrs for prolozone treatments before our doctor here finally started doing the procedure. It is worth it. You will get pretty much immediate relief of pain, and it helps regrow cartilage.

[Despe in reply to bepo]

Personally, I wouldn't mind the driving, and I am not the one in pain, it's my husband who doesn't care to go to another big town to have the therapy.

[bepo in reply to Despe]

Nothing ventured: nothing gained It's worth it! It lasts!

I am healing without knee replacements. He will feel better immediately, and then it might hurt for a couple of days, and then the magic starts working. My last injection lasted. I am also doing stretching exercises to strengthen the knees without weight bearing stress. When I play music in the band, I have to climb one step up to the stage. My goal is to be able to do the stairs without two feet on one stair.

[Despe in reply to bepo]

Hope you reach your goal. Now, I have to convince my husband to have the therapy!

[bepo in reply to Despe]

We went to see Dr, Shallenberger, the father of prolozone, in Nevada. While there in the waiting room, there was an MD who had already had one knee replaced. His friend convinced him to try prolozone before having the second one replaced.

[Despe in reply to bepo]

I have checked Dr. Shallenberger's site, although I had checked it before this conversation. I found a local ND and he said they do provide ozone therapy. We made an appointment for next week. See what he has to offer.

[bepo in reply to Despe]

Excellent. He would have had to have been trained by Dr. Shallenberger.

[Xenos]

I have had that done last year. They don't tell you but there is a lot of rehab afterwards. At the same time, it's such a relief to be able to take the stairs without that pain !

[Grumpy77]

Hello MColmenares

I posted a thread mentioning this same issue some days ago and so many suggestions of high energy supplements and vitamins were mentioned

You might want to have a look at it. Here is the link healthunlocked.com/parkinso...

Good luck

[pvw2]

Inhibitors will do this. But, the side effect lessens over time. Side effects will go up with increased dosage then start down again.

[MColmenares]

Thank you sir

[Grumpy77 in reply to MColmenares]

For reasons I don't know the post appeared twice so I deleted the second one before I realized you had replied to it. But the exact post is still immediately above

[MColmenares]

It hasn't changed for me, with any dosage. No matter how long I have been taking it.

[aspergerian]

Dr. Costantini has published studies reporting that high dose thiamine (HDT) lessens fatigue.

[Maltipom in reply to aspergerian]

Not for me.

[Kia17]

Lowering carbohydrates intake , outdoor activities like walking or cycling, meditation,Yoga can also reduce fatigue

[Kwinholt]

MColmenares, Hi there. I was diagnosed at 49 , will be 57 this year. My Azilect and cd/ld make me tired and for me the disease has given me overwhelming fatigue. My body was just fatigued. I exercise and eat well and they helps but I finally asked my dr if there is something that is given for the fatigue. He prescribed me Modifinal, a natural Adderal. I’m supposed to take 1 in the morning but ive only been taking 1/2 in the morning. It has helped me but I know for some it didn’t work for them . You might ask about it. Take care. Karen

[lenamm]

My B12 level was super low and now that I'm on injections my energy is way higher.

[Despe]

Lenamm is right! Have liposomal B12 (all three forms in one chewable tablet - Designs For Health Trifolamin) and liposomal glutathione. Both of these supplements will help you a lot!

[ddmagee1]

I have fatigue, and sleepiness much of the time. I wouldn’t blame it on Sinemet! To me, it seems like the disease process, of PD, affects the brain’s consciousness/sleepiness center. I cannot prove this, not being a medical or research professional. I, also, have been diagnosed with anemia, which doesn’t help, when I feel overwhelming fatigue and sleepiness. Before these diagnoses, I was seldom fatigued or sleepy! I don’t have a good solution to fix this problem. I’ve tried vitamins, and exercise, which only helps a bit.

[marnegro in reply to ddmagee1]

Anemia may occur as a result of very low levels of B-6 (p5p) as a side effect of carbidopa component which depletes B-6 and this is a essential vitamin not produced by the body, it is just supplied through food or direct supplementation. It is needed by our bodies for a lot of other functions like to control blood pressure too. Few weeks ago my B-6 levels were at 8 and minimum is 5. I started to supplement p5p and my fatigue (very close to anemia) has improved a bit and certainly my blood pressure get steady now. It was having spikes from very low to very high at anytime. If you will start on B-6 be aware to take separate as far as possible from your dose of c/l to avoid it blocks the effectiveness of your Parkinson medication.

[ddmagee1 in reply to marnegro]

Thank you! I did not know all of this! I appreciate your reply and will see if I can apply a solution to my problem.

[Zella23]

One of my husbands worse symptoms is fatigue and sleepiness, been diagnosed for nearly 5 years. No medication has helped particularly with this. He takes supplements including B 1, B 12 amongst others.

A vitamin C drink with other B vits seem to help with energy in the morning and a gym session helps, still sleeps most afternoons. He is 70 this year.

He has cut down on C/L, after Azilect 0.5 prescribed and now Amantadine twice a day, which has really helped with dyskinesia.

Still gets tired and has muscle fatigue after walking, which he says feels like he has had a day of Rugby training!

[Sugarbear67]

Yes I do but my Dr tells me it's all made up. We are fulltime RVer's and when we move from one campground to another 3 miles away I'm so tired and worn out I can't function the next day. If you don't mind how are you getting around these days? Mine tells me I look to good for having been diagnosed in 2003 @ 41 yrs old. I have a new Dr, he has seen me one time and didn't review my huge 4" thick file till I met him.

[MColmenares in reply to Sugarbear67]

I get around with a cane. I also still can drive. My Dr says the same thing, I look good for the duration of my illness

[Bill55]

I was prescribed Amandine for chronic fatigue and occasional dyskinesia. It worked for me. I have been on it for 4 years. Also on Rytary for that same period.

[MColmenares in reply to Bill55]

Thank you

[healthabc]

B complex, B12 sublingual and B1 hcl work for me!Any of them individually, or any combo of them-

[MColmenares in reply to healthabc]

Thanks 😊

[PDGal4]

I'd suggest having your B-12 level checked. D as well. Relatively easy blood tests; mine were both very low on diagnosis 8 years ago. Dr. prescribed B-12 shots for 2 years along with oral supplementation. She suggested chewable vitamins, or sublingual, as pills often don't get broken down and absorbed. I still get tired times during the day, but not the overwhelming fatigue before B-12. I still supplement with daily (along with D-3 and a host of other vitamins/supplements).

[MColmenares in reply to PDGal4]

Thank you, that makes sense

[bepo in reply to MColmenares]

Both my husband and I take methylated B12 supplements. We have the MTHFR gene which inhibits B12 absorption. We also take a natural form of thyroid, naturethroid, or armour thyroid.

[rideabike]

You might want to have your thyroid level checked. That can make you tired.

[Rwesol in reply to rideabike]

My thyroid tests/scan were all normal except for low TSH x 3 so I'm asking about "Central hypothyroidism". Thoughts anybody?

[Sandmanliz in reply to Rwesol]

your TSH can be normal and you can still be low. You must look at T3 and T4 levels as well.

[Rwesol in reply to Sandmanliz]

All other testing normal including nuc scan....

[Stevenmast]

I'm pushing 58 had it at 47 the mucuna I take definitely makes you tired sleepy! I do find the HDT high-dose thiamine helps with energy. Thanks for reminding me to take it

[Reginald1]

Yes I suffer from fatigue and sleepiness and the only medication I'm on is Kinson 3 times a day.

[marnegro]

I was diagnosed in 2007 too at age 43. Sleepiness and fatigue is driving me nuts. It doesn't me allow to think, I'm foggy all the time can barely use the computer or start and finish a task. How about your off periods? mine are very hard, can barely walk and get a terrible rigidity on my neck during off periods.

[sue2000web]

Have you tried magnesium. I take one tablet a day, and now I have to set my alarm, and I sleep for 7/8 hours.

[Rosenmu]

I felt tired and sluggish until I started on Keto, have lots of energy most days, especially if I keep my carbs low. Diet is so important with PD, you won't regret changing things up. Keto, Paleo, Mediterranean, all based on healthy fats, veggies and healthy meats.

[AaronS]

Low magnesium causes fatigue, sounds like an imbalance to me

[aspergerian]

HealthLine mentions fatigue:

healthline.com/nutrition/th...

****

Eg:

RESULTS: Ten patients out of twelve showed complete regression of fatigue, while the remaining two patients showed nearly complete regression of fatigue compared to the chronic fatigue syndrome scale scores before therapy..

ncbi.nlm.nih.gov/m/pubmed/2...

[aspergerian in reply to aspergerian]

7 studies are retrieved when pubmed is searched for:

costantini a fatigue thiamine.

[gwendolinej]

My husband has been taking Mannitol for a couple of months, 1tbs in coffee daily . It improved him mentally very quickly. Google Mannitol and Parkinsons. Also syncolein.com. They have produced Mannitol especially for Parkinsons and have some information on the research, including a video on their site.

My husband had extreme apathy, plus fogginess, particularly in the morning. Both have gone. We are hoping it will help restore his sense of taste eventually.

Mannitol is a diabetic sweetener used to sweeten products during manufacture. When my husband was in hospital recently, doctors were telling me that it's used in hospitals to treat my injuries and has been for a long time.

We are in Australia and we sourced it from the manufacturer here. Others have done that in the UK.

Syncolein supply it, of course.

I hope this is of some help. I got my information initially from a link put on this site. Good luck.

[MColmenares]

Thank you ma'am