Diagnosed July 2020

[ben-landis]

Hi Beth,

My husband was diagnosed with probably early DP in September 2020. I am an MSN prepared RN who has been mainly involved in nursing education during my career. Our daughter has had major sleep issues for more than 20 years (related to fibromyalgia). So I have become someone of an expert on sleep issues. I know you said you have mild sleep apnea and use a dental device. Years ago, I received an incorrect diagnosis after a sleep study and then used a dental device w/o much success. About 5 years ago, I had another study done and discovered that I do have sleep apnea. I have used a CPAP device for 5 years and oh my what a differed it has made.

Other options for sleep: ambien is quite effective but I wouldn’t recommend it for constant use to avoid becoming totally dependent. Trazadone (low dose) which is an antidepressant can be used to help with quality sleep by taking a low dose at bedtime. Finally my daughter’s fibro dr helped to formulate an effective natural product called Revitalizing Sleep Formula, made by Enzymatic Therapy. Can be purchased online.

Best wishes.

Cheryl Landis

 

[beth-t-browne]

Ben,

Thanks so much for taking the time to respond to my question.  I will discuss some of your things and see if we can reach some solution.  I do appreciate your time.

 

 

[beth-t-browne]

Hi Cheryl,

I did a sleep study with my mouth piece, and it was helping as long as I stayed on my side.  But, I do end up on my back at times, and then it does not work.  I got a t-shirt I could put a tennis ball in so when I turn on my back it would wake me, but that didn’t work either.  I could not get back to sleep.

I tried the CPAC years ago, and just could not handle it, but I may have to try it again.

Thank so much for taking time to respond.  I so appreciate it.

Beth.

 

 

 

 

 

[twok]

 

we had a support group member  who was immediately put on the patch because he couldn’t tolerate oral carb/lev…if you push for it you might get to try it…it’s very expensive, I hear.

best of luck!

[j-david-nelson]

Beth,  I was diagnosed with obstructive sleep apnea about a dozen years ago, in my late 60’s.  My ENT tested me with the CPAP device and my sleep was restored to almost normal.  At least for one night.  The “cure,” however, was for me to wear a sleeveless T-shirt with a pocket sewn into the back, right near the top center and capable of holding three tennis balls.  The sleep lab test was as good as the CPAP result, and sleeping with the tennis balls works wonderfully.

[beth-t-browne]

Hi David,

Thanks for taking time to write.

I did try the tennis ball thing, as my mouth piece, special made for mild sleep apnea, worked fine, as long as I did not turn on my back, then the apnea kicked in.  I did not know I slept on my back.  Anyway, the tennis balls thing only woke me up, and then I would lay there for anywhere from an hour to two, usually. Then I would finally get back to sleep, only to be awakened again.  So, I gave up on that.

I moved two years ago 60 miles from where I was living, to be closer to family.  Finding new doctors has been a challenge, but I have almost found the ones I need.  My new pulmonary, suggested a pillow like thing you wear, which responds like the tennis ball trick.  But they cost $200, and I live on a budget, and simply can’t fit that in right now.  And then if it doesn’t work, I am stuck with it.

I am so glad the tennis ball thing works for you.  I was surprised, however, that the CPAC didn’t work no matter how you sleep.  My son-in-law has used that machine for years and loves it.  I tried it about 10 yrs ago, and I was working then.  I spent more time not sleeping, so gave up.  I may try it again.

I have started walking faithfully 30 min a day, and will increase that after two weeks.  I exercised at the gym for 20 yrs faithfully three days a week for 1-1/2 hrs.  I stopped when I turned 73, as my arthritis was getting worse and the doc said not to lift the weights.  My relationship with the gym for 20 yrs. must have spoiled me, as I could not just go and walk the treadmill, so my walking has not been as good.  I have no problems yet with my legs, and I get up at 7:30, and do all kinds of things around my place, go shopping for food, doctors, etc.  I am told exercise is very important with PD.  So, hopefully it will help the tremors.  The meds were making me so sick I had to stop, and now on such a small dosage it does nothing so far.

Thank you again.  Sorry this is so long.

Beth.

 

 

[jlo355]

Hello Beth,

My doctor prescribed for me the lowest possible dose of Mirtazapine, which is an anti-depressant but seems to help people with Parkinson’s sleep. I take it once a day, about an hour before I go to bed. It also reportedly has reduced tremors for some people but I’ve not had that result. I started taking Rytary recently instead of the regular carbidopa-levodopa, and that change seemed to mess with my sleep so now I’m also taking 3 mg Melatonin about an hour before bedtime. I’ve read that this is not an immediate fix but rather it takes a week or two of regular dosing of this over-the-counter sleep aid before it might be effective. I wish you luck – everyone is different but I personally can relate to your frustration about sleep issues!

[beth-t-browne]

Hi Jan,

Thanks so much for responding to my question.  I so appreciate it.  I see my doctor this week, so I am going to discuss some things you mentioned.  I do take 3mg of Melatonin daily.  Been doing this regularly since July, but don’t see it helping.  My doctor says it takes a while to build up.  I am not familiar with Rytary, so will talk to her about that.  Mirtazapine I am not familiar with.  If it would help with sleep and my tremor, that would be great.  Thanks again for your time.

Beth

 

 

[bpettibone52]

Somewhere on the web I found a research study that used GABA and Theanine in a ratio of 1000mg GABA to 200mg Theanine. I use 2 capsules of 500mg GABA by Swanson and 1 capsule of 200mg Theanine by Jarrow. I have been using this combination of supplements for close to a year and it works well for sleep. I take it about 1/2 hour before bedtime.

[deborah-mcdonald]

Hi, what dose of levodopa were you on. Was it straight levodopa as on its own it will make you sick. If you were on low dose sinemet that should be better but if not the Neurologist should be able to give sinemet or if in Europe we also have Madopar. Both have a buffer against sickness. Some people still feel sick but they can be prescribed with an anti sickness drug which should do it. Either way try your neurologist first.

[beth-t-browne]

Hi,

The dose is Carbidopa/Levodopa, 25-100 mg.  My movement doctor, did not offer or say there was a lower dosage, nor did she offer to prescribe something for the nausea.  She just told me to stop taking it for now, and try the Dopamine 15%, which I get from Amazon.  That is not bothering me at just 2 pills a day.  I tried adding a third pill, and then I started having dizziness both in bed and out.  I stopped the 3rd pill about two weeks ago, and my dizziness is not there.  I see the doctor tomorrow, and will discuss this with her.  I am getting frustrated I cannot take anything to help my shaking.  I am petite.  I use to weigh 97 or 98, and now down to 92, due to the nausea and not eating several months ago.  I am eating now, but not gaining very fast.

[beata]

Hi There.  I have a very delicate stomach and was therefore amazed to find that Sinemet, a combo of Carbidopa and Levodopa,  not only addressed my Parkinson’s symptoms but also did not upset my stomach. I believe that Levodopa is the component that buffers the formula and prevents nausea.
As for sleep, I have found that I do well with 15mg timed release Melatonin and .25mg CBN/CBD, the latter to be obtained at a dispensary. I have lately added 500 mg Niacinamide. I still have my rocky nights occasionally but this regimen helps.
Additionally, my mantra is exercise exercise exercise, as much as I can. When I let up I don’t feel as well, I don’t move as well, I don’t think as well.

 

 

 

 

 

[beth-t-browne]

Hi Beta,

Thank you so much for your reply. Lots of good info.

I was taking the combo Carbidopa/Levodopa at 25/100 mg.  It was what was making me so nausea.  At my doctor’s recommendation, I now take just Dopamine I get from Amazon at 15%.  I started with 2 caps a day.  Then got up to 3 when I started experiencing dizziness both in bed and up.  So I went back to the two.  She originally said, taking 3 a day I should be able to get back to the prescription dosage, but it is not looking that way. I see her tomorrow.  I do take 3m of Melatonin daily, but not seeing any results.  I will try the time released and discuss w/her as well.  I have wanted to look into CBN/CBD, and I have a card but was not sure, and did not pursue, but I think I will now, as I really need sleep.  I take a prescription for my cholesterol and did not think I needed the Niacin, but need to make sure it won’t interfere or be too much.  Exercise I have read is so important. I exercised faithfully for 20 yrs at the gym, 3x a week for 1-1/2 hours.  When I retired at 72 (83 now) I continued for one yr but my arthritis got worse, so I stopped.  Two yrs ago I move to Orange County to be closer to my daughter.  At my apartment they had a licensed lady come and I went to her classes for a yr, but then everything stopped, including me.  I am up daily by 7:30, cleaning, cooking, grocery shopping, and walking some, but not enough.  Thanks for reminding me I must get better doing that.

Again, I so appreciate you taking the time to write me with things that have helped you, and I will definitely be trying some.  I have bad allergies with cause me serious lung issues if I am not careful, so I need good sleep.

Beth

 

 

 

[thomas-casten]

Hi Beth:

My wife Judy was diagnosed at age 69 in November of 2012, and we soon learned that medicine did not yet have any drugs to slow or reverse Parkinson’s — had only drugs for symptoms like leva-dopa.  We also saw that exercise slows progressions.  All in, Judy has trained for and run 7 marathons, one per year, and remains independent 8 years after diagnoses.

Okay, marathons are a bit extreme, but recent research found that people that do extended exercise produce natural dopamine, and that after 30 to 45 minutes of exercise, our livers send out signals — ketone bodies — that tell our cells to digest fat.  These ketone bodies pass the blood-brain barrier and tell brain cells to digest fat. Our neuroscientist friend who specializes in Alzheimer’s disease, says that the brain could be digesting some of the lipids that seem to slow brain cell functions.

I am not qualified to claim this is scientific, but our experience suggests that you could try to walk every day and try to increase your time to an hour.

Hope this helps.

Tom Casten

[beth-t-browne]

Hi Tom,

Thank you so much for your time to help me.

I have read exercise is important, and while I was so good at it up until 73, I must admit, I have gotten lazy.  I know I need to walk, and while you and a few others have written its importance, I really need to get myself disciplined.  I am not improving with my shaking as I can’t tolerate the meds, so okay, exercise and stop complaining.  My Parkinson’s doctor has not emphasized this.  Shame on her.  Several who have written me also mention its benefits.

Thanks again Tom.  Much appreciate your kind words.

Beth

 

Amazing story about your wife.  I send my thoughts and prayers to her.  She sounds amazing.

 

[joyce2]

I was diagnosed in 2015. Started Levo/Carbo as did you Beth in January 2020. Long story short, after 3 months of “dizzziness” , the loss of 25 pounds, 2 trips to ER, 2 to GP and finally 1 trip to my neurologist, whom I had been unable to see due to the fact that during that time he suffered at heart attack at the ER, died,  and was brought back to life, he diagnosed me just by looking at me from across the room. I had severe orthostatic hypotension. Normally a 10 point drop causes the dizziness, he gets very worried at 20 points. I was dropping 50 points every time I stood up. Did your doctor check you? I could write a book in this box. I also have always had problems with medications my entire life.

As far as sleep goes, also had  sleep apnea which I no longer have. I take 10 mg of melatoin. I am presently using Nature’s Bounty Sleep 3 which 1. has a calming effect  from L-THEANINE 200mg, quick and slow release melatonine and a 50 mg herbal blend.Stay away from the Ambien-it was orginally prescribed by doctors at to high a dosage and caused many problems. The dose has been lowered but it is not for long term use.

[beth-t-browne]

Hi Joyce,

I just realized I had not responded to your note.  I am so sorry.  I got a lot of comments, but none that have worked yet.

I have never heard of orthotic hypotension.  Thanks for the info.  I will talk with my doc about it.  I stopped the prescription medication and my doctor said try it 2-low dose (15%) w/breakfast, and only 1 at lunch. I have only been doing this 3 days, and so far, not dizzy.  I need to get back on the stronger, prescription dose.

I also started being more faithful about walking.  So two days ago, I walked 30 min.  I am petite, 92 pounds due to loss of weight from not eating, due to prescription.  Never had a weight problem.  The 15% I order from Amazon, as she suggested.  You are first to mention you have a problem with all meds, like me.  I usually only take 1/2 of most.

I will try Nature’s Bounty.  I have tried many I so on the internet with no success.  I take 3mg Melatonin daily.  Maybe I should up it.  I will check into that as well.  I don’t want to take a prescription, although I did take Lunesta years ago with no problem.  I had a noisy neighbor at nights, and I was working.

Okay, you have been most helpful, and I so appreciate your time.  Thanks a bunch.

Beth

 

 

 

 

 

[carolyn-huggett]

Hi Beth,

I also tried Levodopa and had to stop. I have had Arthritis for over 20 years and taken Glucosamine, MSM and Chondroitin during that time which has helped and whenever I stop which I do every so often to see if I can do without it, the pain returns. When I started Levodopa a similar thing happened and the Arthritis supplements didn’t seem to work        ( something I’ve found out recently that can happen with Levodopa). So I weighed it up and decided I couldn’t live with the pain but could manage the shaking in my right hand. I had a lot of nerve pain too and restless legs also associated with PD and my neurologist prescribed me Gabapentin. With walking every day, Tai Chi and dancing I am able to keep the PD in control at the moment. I don’t think you have to take Levodopa because you have PD. Doctors prescribing it says it wards off more deterioration but all the evidence says that patients have to increase the dosage until it doesn’t work any more. So much for warding off deterioration.  Regarding sleep – that is a problem for me too but I take Melatonin and with the Gabapentin , providing I have exercised well, I get a good night’s sleep, usually 8 hours. All the very best, Carolyn

[lyn-richards]

Hi Beth,

There are many people who need to start medications at a lower dose than is usually recommended, and also to increase their dosage more slowly in order to avoid adverse effects. I found that many of my clients were able to tolerate medications that had previously caused a lot of problems at the usual starting dose.

On-line pharma sites indicate that it  is okay to break  levocarbidopa tablets in half (the tablets are scored). Talk with your neurologist about starting at just 1/2 tablet a day and increasing your dose very gradually, decreasing if you have problems and waiting before trying another increase.

I take gabapentin (100-200mg) at bed-time to help my sleep. It was prescribed for restless leg syndrome, which hasn’t troubled me much, but I found it helpful for improving my sleep. When I have a really bad night I take 2.5-3.5mg of zopiclone and that knocks me out. I used zopiclone fairly often for several years before I was diagnosed with PD, and never had any problem with needing an increased dose or quitting it when my work/stress load decreased.  The most important thing for good quality sleep is vigorous physical exercise. This increases the percentage of slow wave sleep — which allows the body to restore itself. Vigorous physical exercise is also the only known way to slow the progression of PD.

Hope that’s helpful!

Lyn

 

[beth-t-browne]

Hi Lyn,

First off, I so appreciate you taking the time to write me about my medication and Parkinson’s.

My doctor did initially start me off doing what you suggested. 1/2 of the medication for two weeks, increasing it to 1 full pill, 3 x a day.  I had the nausea with the 1/2, but went on and increased it for a few days to the full prescribed dosage, only to feel even worse.  I lost  6 pounds quickly not being able to eat, and I only weighed 98 to begin with.  Have always been small, never overweight.

I have not heard of Zopiclone.  I will check it out and discuss w/my doctor.  I have bad allergies which often cause infection in my lungs, and I have to go on a Zipthro Pack to get through it.

Doctor said to try 15% Dopamine, which I could get at a Health Food Store or Amazon.  So, I started taking one w/breakfast and another at noon.  In two weeks I increased it to a third pill at dinner.  It was shortly after that I started experiencing dizziness in my bed and when up.  I finally thought it was that third 15mg pill.  When I stopped taking it and stayed with just the two, I got better.

I saw her today, and she suggested I try taking 2-15Mg at breakfast, and only one at lunch and none at dinner.  She said the time of day might make a difference.  Wish I could believe that, but starting in the morning, I will try that.

She did an MRI on my brain when I first went to see her, and said the lack of Dopamine was my problem.  My concern is not only sleep lost, but I am not getting anywhere with my tremors.  I was diagnoised in July of this year, but we think I may have had PD for a year.

I took Gabapentin years ago for pain and sleep (I have osteoarthritis), but it did not agree with me.  It has been a long time, and I don’t recall exactly what made me feel bad, but I don’t want to try it again.

Thanks again so much.  Your information at least told me my doctor was on track.  She still thinks my body will build up to it, but I just don’t know.

Beth

 

 

[deborah-mcdonald]

Hi Beth, I can’t understand why you have been given dopamine as my understanding is that it can’t cross the brain barrier so is no use. Perhaps you should check with another neurologist. If you are in the UK or Europe you can get Madopar which is like sinemet but has doses of only 50mg of levodopa which can cross into the brain plus a substance to help prevent sickness. In US I guess you’ll have to stick with the higher doses plus an anti sickness drug. Good luck and I hope you find something to suit you soon

[beth-t-browne]

Hi Deborah,

Thank you very much or your time to replay.  I am seeing a Parkinson doctor in what is know as the top Medical Group in Orange County.  She had a brain scan and said while my brain showed no signs of Dementia it did show I have no Dopamine.  So that is why she started me out on it.  I am small in statue, and have always had difficulty with a lot of drugs.  The Dopamine she has me taking now, and she stopped the prescription which was much stronger, is only 15%.  How ever, it is not doing anything, and my tremors are getting worse.  I did see her today, and she suggested I increase the 15% more in the morning, rather than 3 15% pills morn, noon and night, since I experienced bad dizziness.  So I will try that.  She feels I will eventually be able to handle the Dopamine, which she says I need.  If this continues a few more months, I will get a second opinion.

Thank you again for sharing and your time.

Beth

 

 

[paul-hojuson]

Hi Beth: I have similar problems and been on meds for 5yrs. Success is irregular but I have found that my best and productive time is from 1-2AM to 12 noon. Everyone seems to be worried that I sleep only 4hrs max but I wake up fully relaxed and I use this early morning time for reading/computer email/painting/writing etc. I may take a nap during the day and sleep 1-2hrs but again I’m not concerned. Ambian was not helpful. Neither was melatonin nor benedryl.

I am no longer working and am doing more things now than compared to before retirement. I only  wish I could find a solution to that off period from 2-5PM. Even though I take my meds, they appear to have no effect.

I am experimenting with mannitol daily (too soon for any results) and I am using a gamma wave brain simulation device daily (such has been shown to reduce Louie  bodies in lab experiments).

I get the impression that my doctors are at a loss to stabilize my problems so I’m on my own. By the way, I’m 69 and have a LARRKS2 mutation as does my sister.

Paul

[beth-t-browne]

Hi Paul,

Thank you so much for your note.  It is so encouraging to know someone else who only gets 4 hours sleep.  And, that you appear to not have other issues due to lack of sleep.

I have allergies very bad and sometimes, if I can’t get them under control, my lungs get infected, and I get very sick.  Sleep is so important for me, mainly because of this.  I have to take 1/2 of a Benadryl to get to sleep often.  For some reason, my mind will not stop going a mile a minute.  But, I have heard bad things about using Benadryl, so it concerns me even though my PD doc says it is okay.

I have taken a nap occasionally, and sometimes when I think I need a nap, I don’t get to sleep.  But I think I will give that a try more often.  You seem to be on the same wave link as I do.  HA.

I am old, been retired since 2009.  I worked out faithfully at the gym for 20 yrs, 1-1/2 hours 3x a week.  I do think it helped compared to other women my age.  Most people put me in my 70’s, which I guess is nice.  However, do to osteoarthritis, I had to stop my weight lifting at 72.  Going to the gym was no longer enjoyable, and other then walking some, I gave up on exercise.  I am now finding out how important that it is with Parkinson’s and my determination is not as it was back in the day.  I was told that is what keeps the Dopamine in your brain, and that is what I am lacking.  So, I am going to really work on that.  Tremors started in my right hand, but in the last couple of weeks, I feel it throughout.  No one I know of in the family has Parkinson’s, but I never knew my dad, so maybe it was on that side.

I am petite.  Always have been small, never overweight, but I lost 6 pounds when I got so nauseous with the drug.  I now am trying some a bit different.  I was told to switch to Dopamine at 15%, which is not a prescription, and to take 3x a day.  That has made me very dizzy.  So, I am starting to take 2 pills with breakfast, and only 1 with lunch, and none at bedtime, to see if that works.  My doc is trying to get me to work up to the prescription dosage.  I have always had problems with many drugs, so we shall see.

That off period, 2-5pm, for me, is when I do feel like not doing much.  I get up at 7:30, even though I may not have slept much, and I stay busy doing many things around my place.

I have wondered about mannitol and thought it was for people that had more symptoms and have had PD longer.  I will discuss with my doctor next time.  I have not heard of the gamma wave brain simulation device.

I so appreciate you taking time to write.  Hearing your experiences have helped me to feel a bit better about my sleep problems.  I hope you are able to have a great Thanksgiving without worrying about COVID.  My daughter lives nearby, and my granddaughter and her live in boyfriend will be getting together.  My daughter invited a couple near them, which concerns me since I know nothing about their life style, so I may not go.  Also, my hand shakes worse then other times, and getting food to my mouth is sometimes difficult. I don’t like the idea of eating in front of people.

Wishing better health for you, and thanks again.

Beth

 

 

[john-bredenkamp]

Hi Beth, I’ve only been on this PD Journey for four months now, and over the first three months started on  Carbidopa/Levodopa, 25-100 mg taking only half a tablet per day and increasing every few days until I was on one and a half tabs three times a day. My walking improved as did my hand control, but the day I got to two tablets three times a day the nausea and dizziness hit me and I can only imagine what pregnancy does to women! With doctor’s advice, scaled back to one and a half but also take an anti nausea tablet first thing in the day and that has helped tremendously. I also carry a supply of ginger candies with me for when nausea does threaten and I’m fine with that.

I too only sleep for about four hours but am coming to accept that as I don’t want to take any sleep medication. In the middle of the day I put the TV news on and catch forty winks if I can.

As I read of your struggles I count my blessings how lightly I am affected at present. I wish you well.

John

[beth-t-browne]

Hi John,

Just opened my Ipad and read you nice note.  Thanks so much for taking the time to share.

I was diagnoised the end of July of this year, so I am about four months also.   I am petite, now 92 pounds, but started at 98 until the nausea hit and the eating was not there much.  I have never had a weight problem, always been small.

My doctor started me off 1/2 tablet, 3x a day for two weeks.  Did okay on that.  The third week I was to start a whole pill and the nausea started immediately.  I could tell it was helping me, so I tried to continue for a week when she said to stop, and start taking Dopamine at 15%, which you have to get at a Health Food Store, or Amazon.  I could not find a store that carried it, so got it at Amazon.  I took two a day for a couple of weeks.  Then tried that third pill, and I started getting very dizzy, both in bed and out.  She now says try taking 2 of those in the morning with breakfast, and the 3rd at lunch.  None at dinner.  So, I just started that two days ago.  So far, no dizziness, but I shall see.

Glad to know I am not the only one sleeping 4 hours.  I occasionally nap 30 or 40 min and get very sleep around 6 to 8, but when I hit the bed, I am wide awake.  Crazy.  Last night it was 2am, and I am still awake.

I wonder why my doc has not prescribed the anti nausea tablet.  I will ask.  I doubt I will get up to 1-1/2 3x a day, but if I could just get to 1 3x a day with out feeling so nauseous, I would be happy.

I had Whooping Cough at 2 that damaged my lungs.  In the 80’s I would get very sick if I caught a cold.  Had pneumonia a couple of times.  I worked in a corporate environment for 20 yrs, so I had to stay healthy.  Did not want to loose my job.  This is why I need more sleep.  I take a lot of supplements, and my immune is okay the pulmonary said.  However, I moved 60 miles from where I lived for 51 yrs to be near my daughter.  The pulmonary said the weather is just enough different here to be causing my ongoing allergy problems which get severe at times.  So, hoping I can over come this down the road and get more sleep.

I did try the ginger candies for a while, but maybe I need to try them again and be more faithful.

Thanks again so much for your note.  I so appreciate it.  Hope your Thanksgiving is a good one.

Beth

 

[joseph-oconnor]

Hi,

 

The real key to keeping Parkinson’s at bay is exercise – this will also help with your sleep. Melatonin can help as well. You dont have to take CL you can take a dopanaminergic (sp!!) such as ropinirole

[beth-t-browne]

Hi Joseph,

I have heard exercise is important, so I have finally started walking 30 min a day, hoping to up it soon.  At 83, with arthritis, I don’t push anything too much.  I did a lot of dancing when I as younger, and wish they had classes for PD patients only.  I would certainly give that a try.

I have been taking Melatonin for years, but it still does not do anything.  I have never heard of ropinirole.  I am taking 15mg of Dopamine but it doesn’t seem to help the tremors.  My doctor put me on it with the idea I will eventually be able to handle the prescription dose.  I have always had some problems with prescription drugs. I am petite, 98 pounds, never overweight.  And, just have not handled meds to well.  Not all but some.

I am praying the exercise will kick in when I have been at it long enough.

Thank for taking time to write me.  It is much appreciated.

Beth

[joyce2]

Hi Beth,

Sorry I missspelled it:

orthostatic hypotension

Try to cut, copy, paste, theses links:

https://www.multiplesystematrophy.org/about-msa/neurogenic-orthostatic-hypotension/?gclid=Cj0KCQiAqdP9BRDVARIsAGSZ8AkP26q4XlIHf1JwURNWdOP7z7HRbdiz5aXd6TD_VlpB-wN-hhZs9nMaAnt_EALw_wcB

THE MIDODRINE MEDICATION ALSO MADE ME SICK ITSELF-HAD TO STOP THAT ONE TOO>

https://www.mayoclinic.org/diseases-conditions/orthostatic-hypotension/symptoms-causes/syc-20352548

https://www.ninds.nih.gov/Disorders/All-Disorders/Orthostatic-Hypotension-Information-Page

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/

https://www.accesshealth.tv/category/episodes/                                                        SECOND ROW LEFT BOX

Also, the medications/Parkinson’s may  cause:

Supine Headaches which I kept blowing off as my normal migrains.

 

[richb99]

Hi Beth,

Check with your doctor about this idea, but did you try taking half a tablet of the 25-100 sinemet? You could take it morning and afternoon (i.e. 2 times only) and get some benefit without the nausea.

As for melatonin, 3 mg is a starting dose. You may need to take more such as 6 mg (up to 12 mg) increasing gradually until you find the dose that works. But melatonin doesn’t help everyone.

Rich

[beth-t-browne]

Hi Rich,

My reply came back.  So I will try this one more time.

I did the Sinemet 3x a day, 1/2 pill, and got the nausea.  My doc never mentioned to try it your way, however, when the 15% Dopamine I am not taking starting making me dizzy at morn, noon, and night, she suggest to take 2 in the AM and one at lunch.  That seems to be working.  But it isn’t helping.  Her idea is if I take it long enough, I will be able to get back to the prescription, which is stronger.

Not sure why she didn’t suggest what you did, unless she thinks it won’t work.  But, I still have the prescription, so I may give it a try and see if the nausea is not so bad.

Also, I have taken Melatonin for years, with no luck, so maybe I need to up it to 6mg and see how that works.

Thanks so much for your suggestions.  I would like to be able to eat without struggling so.

Beth

 

 

[robert-harris]

I’ve suffered from  “sleep disturbances” since I was about 8 (I’m 70 now) I’ll give you a digest of what sort of helps with sleep for me.

1. I take a pretty hot bath just before bedtime. The theory is that when your body starts cooling down, your brain goes into sleep mode, because it takes a cue from the temp change.

2. Relatedly, make sure your bedroom is cool enough.  Some of the experts recommend a nighttime room temp of 60 degrees F, That’s a bit  frigid for me, so I prefer a room temp set at 70 (for the rest of the family) and a window in  my bedroom kept slightly open, bringing sleeping temp down to 68 or so.

3. I have arthritis in my spine, and myoclonus (spinal also), and a regular backache, plus Parkinson’s. What  I’ve discovered for helping me to sleep is to put two 1″ thick exercise mats on the floor, add a couple of body pillows and  a microfiber cover. The sleep on my stomach with a plush microfiber throw on top of  me as a blanket. Can’t do my side or my back anymore, but  tummy position helps.

4. You might be able to avoid nausea if you eat something with your dopamine. Note that protein will destroy dopamine’s effectiveness.

5. Chamomile tea for sleep, anyone?

6. Are your bowels cooperating? Sleep when constipated is more  challenging.

7. For  troublesome bouts of insomnia, as when I  just can’t sleep and have something important next day, I take two regular (325mg) aspirin.

Comment: dopamine by itself is less effective than dopamine paired with Carbidopa. If your body is producing any dopamine, ask  your neurologist about a dopamine agonist (that makes the dopamine you already have work  harder and last longer. )

Examples: pramipexole, ropinirole,  Requip. One side effect is sleepiness, so if you have insomnia, you might tackle two issues with one pill. Also, Requip is used for  RLS (restless leg syndrome), so that might benefit you there, too.

I hope  some of this helps.

Bob

[ann-perkins]

I do not have sleep suggestions, but i do have a writeup on Sinemet causing nausea.

Controlling Nausea and recommendations if Sinemet is the cause.
There are several ways to control or relieve nausea, including:
Drink clear or ice-cold drinks. Drinks containing sugar may calm the stomach better than other liquids.
Avoid orange and grapefruit juices because these are too acidic and may worsen nausea.
Drink beverages slowly.
Drink liquids between meals instead of during them.
Eat light, bland foods (such as saltine crackers or plain bread).
Avoid fried, greasy, or sweet foods.
Eat slowly.
Eat smaller, more frequent meals throughout the day.
Do not mix hot and cold foods.
Eat foods that are cold or at room temperature to avoid getting nauseated from the smell of hot or warm foods.
Rest after eating, keeping your head elevated. Activity may worsen nausea and may lead to vomiting.
Avoid brushing your teeth after eating.
Try to eat when you feel less nauseated.
If these techniques do not seem to ease your queasy stomach, consult your doctor.
ParkinsonPlace.org August 2014
Letter from a PWP following up a support group meeting June 8, 2011

It is referred to as an “orphan” drug in the United States. The manufacture of domperidone has been discontinued in the U.S. since there is little demand for it and consequently is not profitable. Domperidone is a nausea inhibitor which enables me to use Sinemet.

Your neurologist needs to write a prescription indicating that the drug will be used only to “treat severe symptoms of Parkinson’s Disease or gastroparesis. This drug will be used by the patient only under the supervision of the prescribing physician (prescription enclosed) and is for PERSONAL USE ONLY (personal statement enclosed or/and prescription). Patient has tried other locally available therapies with no success.” Hope this helps, Ann P.

[robert-li]

Hi everyone,

This is my first post so I hope I’m on the right track.  I have Parkinsonism, RLS, and dystonia all in partial remission, but I don’t have PD.  I have had sleep issues for most of my life.  There are a few alternative things that might help.

RLS can be made worse by iron deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5454050/ or low vitamin D https://pubmed.ncbi.nlm.nih.gov/25148866/.

Note that iron deficiency can also increase absorption of manganese (not to be confused with magnesium). Low vitamin D may decrease production of SLC30A10 proteins, which protect cells against high levels of manganese.  High levels of manganese can cause dystonia and Parkinsonism by disrupting dopamine production, and oxidizing dopamine.  However, usually a third factor is required to create high manganese levels, like liver cirrhosis or exposure to airborne pollution, usually from metalworking sources or train tracks.

One other note, I started taking magnesium to reduce muscle spasms, and got RLS badly for two days, and then it went away.  I am still taking magnesium.  Also, sweet potato for dinner helps me, both from beta carotene and reducing constipation.  It is important to fight constipation and IBS for good sleep.

Also if you have sleep apnea, it can help to sleep on your side (besides have an appliance of some sort).

Stay safe, I hope this helps.

Robert