Usual other symptoms........an imaginary wind at my back pushes me faster than I would like........light headed........jerking arm movements, one side only and only when its at rest and I am trying to relax.
I have horrid nightmares and often wake m... - Cure Parkinson's
I have horrid nightmares and often wake myself up screaming......3 times in the one night last week. On Madopar and Sifrol ER.
Read more about...
53 Replies
•
Try ETS Zeolite to detox from your drugs...this is the cause of your symptoms, also drink distilled water and try Rifedigital.com Find out why natural cures have been suppressed in this country..the human organism was not ment to digest and use artificial drugs..this cause a host of other problems. try using magnascent iodine... you probably have a mineral imbalance. avoid toxic foods and toxic snacks...take control of your health. I used to have asthma and low thyroid, i no longer have these because I took control of my own health and stopped taking drugs which just caused more problems and never fix the issue. Your body does not need drugs it needs detoxification and vitamins and minerals. If I would have kept listening to the doctors i would have been a hot mess..thank God I used my common sense and did research. Watch gary Nulls exposes FDA documentary and see why drugs and your doctor are very hazardous to your health.
• in reply to
I am sorry but your reply is too confusing.
• in reply to
Google everything i mentioned i.e. rifedigital.com, distilled water, magnascent iodine, ETS zeolite.
• in reply to
Googled Rife Machine Australia
I could never go that way. Pages and pages which go against the efficacy of this machine.
• in reply to
I told you rifedigital.com This machine is Dr. Royal Rife certified. And he proved it's effectiveness. Do you want to be sick forever? Or are you going to take control of your health. You keep using drugs and will never heal, so why not try something that cures you.
• in reply to
I did google rifedigital.com. My husband and I both agree its definately not for me. Of course I don't want to be sick for ever.....who does but in this case Im sticking to my 'gut feeling'
However we will investigate further...".Nascent Iodine and Magnesium Chloride.
We are not stupid and believe very soon will be the breakthrough.
Now maybe you would be interested in googling:
Www.theverge.com and read.....
Scientists believe lasers could help CURE
Alzheimer's and Parkinson's.
Ryan12• in reply to
MY brother died from Parkinsson's symptons, choked on food he was in a nursing home and over over medicated.......Doctors hand out drugs like candy....he did not recognize his family one doctor started him on the nicotine patch and he recognized his family and could carry on a conversation. Stop taking all those drugs my brother had nightmares and talked to a friend all the time,,,,,,,,drink plenty of water and cut the dosage in half, drink waer to flush the meds out......try some natural meds......you alone can take charge and decide which meds help and cut out the ones that give you nightmares,,,,,,,,good luck stay in touch....let us know how you make out.
• in reply toRyan12
Thank you for your good wishes Ryan. I would likes to stop all medications but to challenge my Neurologist is rather daunting.
People say they cant see that I have PD but they cant see how I feel. The thing that scares me the most is falling.
Ryan12• in reply to
I chaallenge my Nerologist all the time it is my body and I should have the right to take what helps and discard the rest, as a test go to another Doctor and ask for a second opinion CU djr
• in reply toRyan12
You should try a Naturopath.
• in reply to
Taken on board especially after downloading from Integratedhealtblog.com........Parkinsons Disease:Supplement and Activity Program
quirkyme• in reply to
god heals
as a former RN and later a healthcare worker, stick with regular medicine. Naturopathy is unregulated and untested. And I would hope you wouldn't practice medicine here by telling people to try alternative medicines just because it is your 'belief.' Some people are gullible and might take your advice.
• in reply toquirkyme
The same regular medicine that kills 200,000 Americans every year? No thanks kid!!! Toxic substances are not supposed to be in your body period!!! You have no clue at to what Pharma industries do to keep you dumbed down like a zombie on drugs for their profit, do you? I healed myself Asthma, and hypothyroid with the time proven, over 3000 years of natural herbs, if you want to stick your head in the sand be my guest..if i had listened to people like you I probably would be dead or on ten differant drugs. keep your dumb comments to yourself kid.
• in reply toquirkyme
I have helped a number of people get off drugs, and heal themselves thank you very much...Diet is key to your health..if you eat chemically laden food your in trouble. Detox is also important. Face the truth Pharma drugs do not cure anything and only make you sicker. natural cures have been suppressed by FDA and AMA since the early 1930's. You do not know what you are talking about and remind me of a mind controlled zombie.
quirkyme• in reply to
your comments and name calling will turn people off....
Let's keep things positive and helpful. The purpose of this forum is to help one another. Bridieelena said she wouldn't follow your medical advice. That should have been the end of it.
• in reply toquirkyme
Keep in touch Quirkyme. Thank you for supporting me although I feel like retiring from this Forum
quirkyme• in reply to
I'm sorry that this exchange kind of hijacked your question. Apologies for my part of this. I got triggered.
Please don't let one unhelpful exchange influence you to leave. These conversations are important.
I've been on here a couple months and most people are very helpful and affirming. We learn things we'd never learn otherwise. People care. They are going through the same thing, only different because their experience with PD. Focus on the good.
The way I get through being a caregiver for my husband is gratitude as a spiritual practice.
• in reply toquirkyme
I gave her good sound advice, no one is forcing her into anything. Natural herbs are synthesized by drug companies, but are worthless due to the fact that they are inorganic and harm the body.
Dear Bridieelena,
I feel for you,
Check with your doctor for I think perhaps madopar is in different forms -
I am separated from my husband but I believe he has some in tablet form, some disperable in water, and some in patches (?)- it has helped him through the emotional roller coaster road he is going thorough.
Also his bedroom has had numerous little changes over the years that seem to have helped - classical, an electric pedestal fan on - throughout the whole year (at gentle breeze) and a night light on - things I didn't think would make any difference, but surprisingly seem to have...
Regards,
Alana - Western Australia
• in reply toSharonAB
Thank you Sharon. I live in North Queensland so it is comforting to hear from another Aussie. Havent had another episode for quite some time.
I mentioned it to my Neuro when I last saw her.....she was very indifferent. As we talk over so many things sometimes we dont visit all previous topics. I come away never feeling positive and go over our conversation in my head.....its then I realize that we havent come to a resolution over important symptoms.....oh well......theres always next time.......I see her every 3 months.
My bedroom is glorious. Two walls of glass which allows me to view the beautiful emerald water of The Whitsundays which is part of our Great Barrier Reef....it is very calming. I never read in bed. Fall asleep almost as soon as my head hits the pillow but I dont go earlier than 10.00pm. Wake around 4.30 am. We shall overcome. Have to believe that.
I should go back to your Doctor and tell him the exact problem you are having.
I know from experience the nightmares and lack of sleep.
It may be the Madopar does not suit you, or you can have it in slow release form.
I had problems with the Neupro patch, in the end I stopped using it. I do feel better.
Now I take Madopar 125 x 3 daily and two coconut oil capsules daily I do think it is helping me.
Every person is so individual in their requirements of drug dosage the optimum dosage is not always right
I wish you all the best
cabbagecottage• in reply to
how long did it take for tempeh effects of the patch to wear off owdsod
• in reply tocabbagecottage
About a week I suppose.
I take Madopar 125 X 3 times daily too. What is a Neupro. Patch.? Heard so much about Coconut Oil.....not sure if it can be obtained in capsule form here. Shall google it. Can buy the Oil locally and have tried it but its like eating moisture cream.
Also on Azilet and Sifrol ER. Sometimes wish I had never visited a GP to find out why I had a slight tremor. My Neurologist is 1400 klms away and I have to fly down to see her. Next visit scheduled for Jan. 2014. I am a bit timid when it comes to challenging my prescribed medication.
Bridi
Info from the Australian literature:
Vivid dreams and nightmares are commonly experienced by PWP and may be exacerbated by medications used for Pd. If nightmares are disturbing, the treating specialist may review the timing of medications.
Less frequently, dreams or nightmares can be carried over to the waking period and may be confused with hallucinations.
See
parkinsons.org.au/about-ps/...
and
parkinsons.org.uk/content/s...
• in reply toHikoi
Hi Hikoi
Have just finished reading from parkinsons.org.au/about.
It was easy to understand and comprehend. I haven't been able to roll over in bed for years and didn't know why. I grab the bed head for assistance. Still have plenty of energy even though I only average about 5 hours sleep. Up until being diagnosed and starting on all the drugs, I worked full time catching a train into the city for about a 45 minute ride, It was easy to fall asleep until I had to exit. Wasn't overly tired at my job but again on the way home could fall asleep until I again had to exit. Weekends I would still be in bed until 10.00/11.00.
Obviously it is the drugs stopping me from that 'activity' now. I do like the early morning wake-up and get up and go much better.
Thank you
Bridie. Qld Australia
Hikoi response was right on. Start a journal noting what time you took your medicine, what kind of day you had and what you eaten that day you may find a pattern. I know when I first started taking Sinemet it states vivid dreams was common. They finally started to subside after I was on the medicine for awhile. Next time you see your doctor bring a list of everything you want to address so you'll leave with answers to all your questions. It's very easy to get side track during an appointment and forget to ask a question. Good Luck!!
I too had horrid dreams and so vivid you could write. A book about it the next day.
Contacted my pharmacist whom I feel knows much more than many doctors about
Drug regimens and found the new drug for gastric reflux wash the problem.
Needed the medication but not this side effects,once he stopped the gerd medication it ended. Try the Pharmacist vas all you have to lose is a visitm or call and gain release of nightmares. Worth your time and even iif not the answer you h,mmmave a answer of effects of medication. Good luck.
Polyanna007
Ambien caused nightmares. Doc switched me to klonopin and I added valerian and melatonin. Now I have vivid dreams but they are very pleasant.
• in reply toPolyanna007
Hello Polyanna007
Yes, my Pharmacist is looking out for me. Would you believe I am the only PD client he has. They dont keep PD medications and always get mine special delivery following the filled one. I do believe its either madopar or sifrol. Have been on a thyroid medication and a blood pressure tablet for years so dont believe its either one of those.
Admittedly I havent mentioned the nightmares to him. Food for thought.
Also last week changed GP's and once again came away forgetting to mention so much. I am a carrier for Haemochromatosis too and even forgot to tell him that. My Mother and Sister have Haemochromatosis and have to have Veni (? Spelling) sections regularly to prevent the build up of Iron in their vital organs. Maybe the problem lies there.
Thank you so much for caring
Bridieelena. Queensland Australia
Hi Brideelena my meds were stalevo & sifrol & i was falling asleep & dreams would wake me sometimes within seconds, no nightmares though. Just over a year ago I had DBS and am now taking 2 tabs of sinamet CR a day.
I found that the Sifrol was causing most of my problems I reduced it down from 3 tabs a day to 1/2 tab a day with no difference, finally stopped the half tab. My legs are no more swollen & red, I have lost 16kg's in weight, no longer having problems with diskenesia & hardly any compulsive behaviours. For me it seems most of the side effects I was suffering were from the sifrol.
Mick Newcastle Australia
• in reply tomag2908
Gosh Mick so glad you got in touch.
I have put on weight too and the swelling around my ankles and wrists grotesque. At least that's how I feel about myself. Hiding away in long pants and long dresses.
The Sifrol ER I take is extended release. I definately will talk over going off this one.
Thank you
Bridie. Qld Australia
mag2908• in reply to
Brideelena I agree with some of the previous comments about taking charge yourself. i weaned myself off sifrol from 3 tabs per day to 1/2 tabs a day, nothing happened until I stopped taking that last 1/2 tablet. That left me on 3 madopar per day with Sinemet fcr diskenesia as required. Every time I took a madopar I wound up with diskenesia around 1 to 2 hrs after taking it. I then weaned off madopar & increased sine met. I did this myself but talked to my Parkinsosons nurse GP & neurologist to keep them in the loop, they had no problems with what I was doing, and it worked out well for me. Having said that I probably would not have done it if they had strongly disagreed with my theories. Good Luck.
Mick
• in reply tomag2908
Mick, I always seem to be better before medications than after. I have come out with rashes now since adding Azilect, which are distressing.....red and itchy......something else to put up with until I can see a professional. Just made up my mind....making an appointment tomorow.
mag2908• in reply to
Good luck, having DBS has helped me, maybe without it I would still need to use those medications
Hikoi• in reply to
Bridie
Parkinsons is a very complex multi systems condition that can affect every part of our body from eye problems to swallowing problems to cognitive issues to muscle and joint problems to digestive problems.... Some countries the differing symptoms get separated off and are often treated as separate conditions, some countries like Australia are less likely to do that though you may have a specialist referral for advice on a particular problem.
It takes a long time I believe for our bodies to get used to our meds ( months rather than weeks) and as the disease is progressive many of us find we are having to adjust medications on a regular basis.
There is some very helpful literature on line especially about the type of meds available to treat PD (there arent that many). We each have to be experts on our own condition, for instance I am on a sifrol equivalent, it controls my muscle aches and increases my flexibility, I think the cost of some ankle swelling is worth it. Others may not.
I hope you work out what is best for you as you sift through all this information. Meantime enjoy that view from your windows!
This is a long list and technical but shows the many effects of PD
Table 1: Major nonmotor symptoms (NMS) in PD (adapted from [3]).
(a) Neuropsychiatric symptoms:
(1) Depression
(2) Anxiety
(3) Apathy
(4) Hallucinations, delusions, illusions
(5) Delirium (may be drug induced)
(6) Cognitive impairment
(7) Dopaminergic dysregulation syndrome (usually related to
levodopa)
(8) Impulse control disorders (related to dopaminergic drugs).
(b) Sleep disorders:
(1) REM sleep behaviour disorder
(2) excessive daytime somnolence, narcolepsy type “sleep
attack”
(3) restless legs syndrome, periodic leg movements
(4) insomnia
(5) sleep disordered breathing
(6) non-REM parasomnias (confusional wandering)
(c) Fatigue:
(1) central fatigue (may be related to dysautonomia)
(2) peripheral fatigue.
(d) Sensory symptoms:
(1) pain
(2) olfactory disturbance
(3) hyposmia
(4) functional anosmia
(5) visual disturbance (blurred vision, diplopia; impaired
contrast-sensitivity).
(e) Autonomic dysfunction:
(1) bladder dysfunction (urgency, frequency, nocturia)
(2) sexual dysfunction (may be drug-induced)
(3) sweating abnormalities (hyperhydrosis)
(4) orthostatic hypotension.
(f) Gastrointestinal symptoms:
(1) dribbling of saliva
(2) dysphagia
(3) agueusia
(4) constipation
(5) nausea
(6) vomiting.
(g) Dopaminergic drug-induced behaviour NMS:
(1) hallucinations, psychosis, delusions
(2) dopamine dysregulation syndrome
(3) impulse control disorders.
(h) Dopaminergic drug-induced other NMS:
(1) ankle swelling
(2) dyspnea
(3) skin reactions
(4) subcutaneous nodules
(5) erythematous
(i) Nonmotor fluctuations:
(1) dysautonomia
(2) cognitive/psychiatric
(3) sensory/pain
(4) visual blurring
(j) Other symptoms:
(1) weight loss
(2) weight gain.
More info at:
hindawi.com/journals/pd/201...
• in reply toHikoi
Some research there Hikoi. Yes, I can relate to some. Most though I hope I never have to relate to.
I have a support group meeting this week. Shall take this with me for discussion.
Hikoi• in reply to
I hope you have an interesting discussion.
The list is by Prof. CHAUDHURI, London (and others) and there is a questionnaire many neurologists now use with patients. It is here
parkinsons.org.uk/sites/def...
And here
Thanks for the reply Brideelena. We are as about as far apart continent wise as one can be but same issue it
seems. However here in Florida in the USA we are blessed with an abundance of PD. Not a true BLESSSING
but have excellent Neurologists that deal with this condition. It seems to be a common thread in reactions to many medications for those with PD. I was on the GERD medication ( Gastric Reflux Disease ) for years before taking Ropinirole and it is contraindicate with the pill I was taking and caused severe reaction before the
pharmacist read on and on and on--------. I feel your pain when trying to decide what to take and what to
eliminate. God Bless and hang in there as better days are coming for us.
Try making a note to _ ASK DR ! .. before next visit as they usually walk in walking out!!!!!!!!!!!!!!
• in reply toPolyanna007
Hello again Polyanna007
I have had a giggle with your final statement : oh so true!!
Yes everything will be written down before I attend next session in early January.
Feeling better already.
when my husband was first diagnosed, he went through a period of crying out and flailing and nightmares. It happened when he had watched violent movies. He was on totally different meds than you. Now 6 years into this his body is used to the meds and his decline is slow (I tell myself).
He was also diagnosed with sleep apnea and gets better sleep/better REM (deep) sleep. He's never had a nightmare while wearing his mask, so I think he had a spell of not breathing and that may have led to his panic. I don't have PD but I have weird patterns before my eyes whenever I eat any processed meats. There's something in those foods that cause this to happen. Now I avoid them. The brains of PwPD (people with PD) are sensitive already and we need to know that any symptoms might be multi-causal. We often have to be our own detective and keep a diary or keep side effects in mind.
Good luck
• in reply toquirkyme
Thank you quirkyme
So much information I am receiving from each and everyone with PD anyone of which could be beneficial.
Re processed meats.....I am very aware of how terrible they really are and avoid them most of the time.
My brother wears a mask every night for his sleep apnea but I dont believe I have the same problem however again food for thought.
Our father definately had sleep apnea and would wake when he stopped breathing so maybe its a hereditary thing.
quirkyme• in reply to
yes, so much to take into consideration. It all goes into the mix.
We all work hard to do our own sleuthing.
Sleep apnea can come with age as the tissues relax. I have severe sleep apnea and I don't have PD. Again, I remember my father would stop breathing and snort (hypopnea, it's called, I believe) as he woke up.
Anyway, keep one keepin' on!
• in reply toquirkyme
Your dad sounds like my dad.
here's some info. on sleep apnea and PD. There's 'central sleep apnea' --that originates in the brain not functioning and regular sleep apnea that comes from the tongue relaxing and blocking the windpipe. I think my husband has both. Here in the US those with sleep apnea are actively treated because statistics bear out that a sleep mask, used regularly, can improve and maintain overall health. Insurance companies here know this so they pay for the treatments.
I have heard what you have said and would like to end it now. This slanging match is not productive.
Thank you and do hope you find a more sympathetic ear somewnere else.
• in reply to
Why don't you follow your own advice, thanks.
I feel so sorry for you. I have experienced the same nightmares - so I know what you are talking about. A lot of these well-meaning answers are not so easy for you to act upon. So much information - and Your neurologist so far away. I Guess you have understood by now that the nightmares are getting worse due to the medicine you use at what time of the day. I had Your problems half a year ago, and I was recommended to try to change the medicine I'm using - the agonist Requip. Not the same as you are using. I regulated my medicines so that I did not take so much Requip Close to my bed-time - but took them in the morning and during the day instead.
That has helped a lot and now I can sleep almost without nightmares for long periods.
I think we can try out this ourselves - it's not going Down on medicine - but changing the times of the day. Good Luck to you!!!!
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