Is it worth taking?

Discussion in 'I have dementia' started by Richard and Fin, Apr 27, 2019.

  1. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    I was going to call this post, Alternative Medication, but as there is no medication available.... there can not be an alternative..

    I'm taking all sorts of stuff, based on the latest research, although this is not so straight forward. One day... this is what you should do and the next... it's most definitely is not good for you!?

    When Red Wine and Chocolate was in... I was a drunk, chocolate stuffed lump! But guess what! :eek:

    Only joking about the drunkenness bit... only true some of the time.... just try to show the example of conflicting research.

    I'm taking Omega 3 LPC.. containing 600mg EPA and 440mg of DHA.
    This according to some research is the way to go and like all positive research the market follows!

    There are loads of companies, that you may never of heard of before, now producing, or just selling this type of Omega 3 type product.

    So what do you think? Is it worth giving it a go, should you follow the latest research, should you let these companies make money out of your demential? What is the alternative?

    What are you taking and does it help?
  2. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Well, worst case scenario is that Omega 3s are good for your eyes, skin and muscles. I take them because my eye doctor suggested it after my cataract surgery.
  3. AliceA

    AliceA Registered User

    May 27, 2016
    Several opticians have approved of Lutein. We have noticed the difference Glucosamine has although one has to take it a while before the joints notice. Vit D in winter. A lot of vit C for colds. Buffered is best. Otherwise a good mixed diet personally I do not eat meat. The best vitamin is not to worry, concern is different in my book it encourages action!
  4. AliceA

    AliceA Registered User

    May 27, 2016
    Omega depends on source, some better ones have a bad effect on the environment Catch 22.
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I take lots of supplements. I`ve no idea if they are helping me or not.

    All I can say is the problems I have are stable and the problems I might develop in future have not yet shown themselves.

    I do believe Glucosamine and Turmeric have helped slow down the progression of my arthritis but the other stuff I take is unlikely to be proved effective.

    My husband took the same supplements I take, except for Glucosamine but with the addition of Gingko Biloba and Ginseng. Both disagreed with me so I stopped them. He also ate far more oily fish then I ate, including sardines and mackerel a couple of times a week.

    I doubt any of these supplements are harmful and when my husband had dementia I would have tried anything to help him. He took these supplements for years before dementia kicked in so who knows how effective they are but I can`t blame anyone for trying.
  6. Bollasm

    Bollasm Registered User

    Dec 9, 2018
    Hi your so brave, you trying control your illness and telling people to let them know I hope you get all the help you need like my mum
  7. Lawson58

    Lawson58 Registered User

    The geriatrician recommended that my husband take high dosage Vitamin B12 and Souvenaid though he admitted he couldn't really say if the Souvenaid would have any benefit. He is a medical consultant for the company that produces it so you can make of that whatever you want. For his AD he also uses rivastigmine patches. His AD is progressing slowly but no one is prepared to say if it is the supplements helping or whether he would have been the same without them.

    Then it starts getting complicated by his need for iron tablets as a result of two massive nosebleeds and an internal bleed. Then because he takes iron tablets he has constipation so has to take laxatives as well. Add on all,the stuff he takes for his heart condition and his prostate/bladder, all the stuff he has to use for his skin, and I think it is amazing that he is still upright and breathing.
  8. patbryn

    patbryn Registered User

    Mar 22, 2019
    some supplements can work against proscription drugs so we need to take some care and talk to your doctor if you worry (if they know the answer that is) I take multi vits, Glucosamine, Turmeric and B12 because of my Vegan diet. I have mum on Cranberry juice capsules, horse chestnut oil and multi vits. I did try her on saffron as well but it also works to suppress the apatite so i took her off it as she hardly eats anyway.
  9. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    Good Morning everyone and a big thank you for taking the time to reply!

    The point about anyone saying if they help, or not... yea that is not going to change, unless they're doing research on it! It does seem you have to take pot-luck and decide on which bit of research seems to hit a chord with you.

    The conflict of drugs.... I take a load of stuff every day... prescription drugs that is and everyone of them tells me what I should, or should not be taking, and possible side affects. I think most of them conflict with each other, but the doctors still keep giving them to me!? I'm addicted to some, take others to counter problems of other drugs and rattle!

    1. Aspirin 75mg 1 daily
    2. Atorvastatin 80mg 1 daily
    3. Bisoprolol 5mg 1 daily
    4. Candesartan 16mg 1 daily
    5. Donepezil10mg1 daily at night
    6. Bendroflumethiazide 2.5mg 1 daily
    7. Betahistine16mg 1 - 3 times daily
    8. Cinnarizine 15mg 2 - 3 times daily
    9. Citalpram 40mg 1 daily at night
    10. Gabapentin 300mg 1 - 3 times daily
    11. Glyceryl Trinitrate 500microg when required
    12. Lamotrigine 150mg 1 twice daily
    13. Levetiracetam 1.5g 1 twice daily
    14. Mirtazapine 45mg 1 daily at night
    15. Pregabalin 100mg 1 twice daily
    16. Risperidone 0.5mg 1 daily at night
    17. Zomorph 40mg 1 twice daily
    18. Omeprazole 20mg 1 daily
    19. Salbutamol 100 micrograms every 4 hours
    20. Salmeterol 50 micrograms 1 twice daily
    21. Cleaning Modulite 100 micrograms 2 twice daily
    22. Senna 7.5mg 2 daily at night
    23. Oramorph 10mg/5ml when required
    24. Lorazepam-1mg 1 twice daily
    25. Ispaghula husk 3.5 1 twice daily
    26. Simple Trident T2 Sterile Leg Bag 500ml replace every other day
    27. Clear Advantage Sheath replace every day
    28. Micro-Enema 5ml every other day

    I usually try something for a few months and do a self assessment! ;)

    I just think what have I got to lose... but then some days I think, why bother!?

    I do plan to come off as much of this medication over the next two years, if I'm still around.

    Told doctor.... not too happy... with idea, but my life! :)

    Have a lovely day!
  10. AliceA

    AliceA Registered User

    May 27, 2016
    Our late friend a scientist and homeopath with a herbalist husband warned against mixing too many drugs. She said as a bell ringer she knew how many changes it was possible to ring.
    Her thought was a chemist may know the reaction of some drugs with others but throw a few more into the mix and it becomes impossible.
    I try to use things derived from food, so turmeric, ginger etc. She also said that herbal remedies often have a buffer in them as opposed to a manufactured remedy. She quoted aspirin v willow bark.
    Mind, I got quite high one hot day, I made lemonade with camomile and lemon balm. It was very hot! When family expected supper I could not care less. Re reading the herbal it said a small sherry glass and I had been drinking by the tumbler.
    Perhaps I should make it again.
  11. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    #11 Richard and Fin, May 1, 2019
    Last edited by a moderator: May 1, 2019
    Hi Alicea

    Turmeric... is one of those popular at the moment, but I would try anything!

    Talking of trying things... I like the sound of this Lemonade, camomile and lemon balm... this sounds like a magical potion worth a try! :rolleyes:

    I'm looking at the cannabinoids in cannabis... this is one of those things that one minute it's in and the next it's not!

    There seems to be two main components... one for high and one for pain relief... Both would be good for me.

    Now they are everywhere, even advertised on the telly... but it's a money making scam again. You can never know if it the genuine thing or not.
  12. 70smand

    70smand Registered User

    Dec 4, 2011
    Hi there, ( Mandy; dad has Alzheimer’s ) Wow! What a cocktail you are on @Richard and Fin, and no wonder you are curious as to whether there are alternative/ complementary medication available. I guess it depends on how you feel on the meds you are prescribed and if you feel they are doing you harm, or making you feel worse. I am familiar with all the meds you are on but a pharmacist is always a good person to ask, especially about any interactions, and everyone can react so differently.
    I’m also curious as to whether cannabis helps as I have seen people on cannabis oil, but not seen much evidence of it working, although I am a palliative care nurse in a hospice. There definitely needs to be research into the long term effects of cannabis and if it has a role for certain conditions.
    I would love to know whether additional herbs and vitamins really help, and are even absorbed or is that another market fleecing everyone.
    I am taking turmeric, magnesium and b vitamins and I can’t even remember why, but I must have read something to say they help with arthritis.
    I know I took fish oil capsules a few years back and they repeated on me - my husband joked and called me ‘fishbreath’ And I never took them again :rolleyes:.
    Over the years I have looked up just about every medication to do with Alzheimer’s and when drs have started my dad on drugs to help with one problem they have usually caused another - I guess that’s just because everyone reacts so differently and what suits one person does not always suit another, especially one with such a damaged brain.

    My mum read somewhere coconut oil helped and she gave dad so much that it upset his stomach, so she cut it back after that - never too sure if it helped or not. I guess that’s the problem, we’d rather try something and not just wait for dr’s prescriptions.

    I do know that some of the medication for behaviour, whilst improving dad’s mood, have given him a far more rapid deterioration to his health, but that’s just my dad.

    I’m also gonna try me some of that lemonade ;). I will keep googling and see what I find, but how we know if it’s all just false advertising’s don’t know.
    Good luck and Best wishes x
  13. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    High Peak
    Richard, I am really shocked by this list. Several of the drugs are different versions of the same thing. Have you shown this list to your doctor? I'm sure he/she would be as shocked as I am to see it there in black and white. (Obviously I have no knowledge of your various other health conditions.)

    OK, here's the problem. When you take so many powerful substances, it is impossible to know which are working and which are not, or which are possibly making things worse. This is always a problem with any sort of drug trials - it's virtually impossible to say whether a perceived benefit is due to a drug when you can't rule out all other factors. (Lifestyle, diet and even social class make a BIG difference in drug trials!)

    A lot of the hype you read about any new wonder drug or trendy diet is simply 'bad science' for exactly this reason.

    Please discuss your meds with your GP - no one should be on such a crazy mix.
  14. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    Hi Jaded'n'faded,

    I have just had my review, because I have several on going problems, the drugs are geared to treat those particular problems. Every time I go to the hospitals they go through my medication and nothing changes.

    All my medication is now supplied is blister packs, arranged by the Dementia Clinic and GP.

    I've been on many of these for so long, I'm addicted. I can tell when there is any change, or if I miss anything.

    I've also told my GP that I wish to reduce my medication over the next two years as a part of my way of dealing with my dementia. This will be hard and may not be possible, but it would be nice to try!
  15. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    High Peak
    Sheesh. Well I'm very glad it is being checked. Still seems an awful lot to me...

    I hope you do manage to reduce it. But it will be hard to work out which to try dropping! As you say, long term use/addiction plays a part now and that complicates things :(

    Your upbeat attitude does you great credit!
  16. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    I often think my manic state... switching from supper high to pit bottom, is often made worse by the drugs... but what do I know... I'm just the patient! This will change over the next two years, it has to!
  17. exsmoker

    exsmoker Registered User

    Apr 30, 2017
    Hi Iam taking memantins 20mg prescribe by my doctor and they really do help
  18. Philbo

    Philbo Registered User

    Feb 28, 2017
    Before my wife was diagnosed, when I could tell that all was not right (but hoping it was something other than dementia), there were a lot of articles in the media about coconut oil.

    I seem to remember that one "celebrity" in a newspaper article reported that giving his parent coconut oil on cereals each day had a dramatic affect - purporting to be something of a miracle cure?

    So I purchased a big jar from a health food shop and dutifully grated it onto my wife's Weetabix every morning - for the next 6 months! Needless to say, we did not observe any improvements or any noticeable slowing down of the progress of her condition.

    The other thing I often find is well-meaning relatives or friends will alert you to various "cure for dementia" stories, as though each one is "the holy grail". I usually politely thank them for their interest and then wait for the counter-claims to appear.

    To be fair though, there have been times when, if someone said that standing on your head, naked, it a muddy puddle whistling the Monty Python theme tune would help, we'd have tried it:D

    Just a good job that no-one did!:)

  19. witts1973

    witts1973 Registered User

    Jun 20, 2018
    Leamington Spa
    I tried loads of different things for my mum coconut oil and pills,beetroot juice,turmeric and the list went on and on,then she couldn't even swallow the pills so I still have have them lying around,she's bed bound now and were just enjoying our days together as best we can,at least I known I spent hour after hour researching and grasping at any little amount of hope to help her.
    My main goal is to give her good nutrition now and keep her from getting constipation and I'm doing well on that side of things,I'm at peace with myself.
  20. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I think that is all you can do

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