1. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Please could any of you very knowledgeable folks tell me if "faints" not blackouts or epilepsy are a symptom of AZ.

    David started having faints, while driving unfortunately though no one was ever hurt thank God, in 1996. He was diagnosed with AZ in 2002 officially after many years of no-diagnosis. He continues to have these "faints" and our GP has said it is because his blood pressure drops very low.

    It is something which has bothered me for years and has not gone away. We have even been in shops and quite happily shopping and then the next thing he is on the floor. At the beginning it has been known for him to "faint" several times a day resulting in him having to be taken to hospital, but nothing could be found and hence discharged back home.

    I would be grateful to hear from anyone who has experienced these symptoms.

    Thanks in anticipation.

    Katie
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Oh Katie, this brings it all back to me!

    The first sign I had of Jan's dementia was her telling me she had started fainting regularly, and bruising herself when falling.

    Her faints continued for years - this was before diagnosis, but no-one would take them seriously. Since then they have tried to call them fits, which they were not. They were classic faints.

    At first they happened mostly just after breakfast, but later it might be in church, or at other times of day.

    The worst ones were when she was sleeping.

    Yes.

    My MP has just been this hour with me as I was telling him about the problems of Early Onset Dementias, and when I told him this he said "how did you know if she was sleeping at the time?"

    The answer is in two parts.

    Firstly, there were big and little faints [no, NOT petit and grand mals]. In the big ones, her bladder would go and we'd get a wet bed. So that would show she had fainted. That was in the early days.

    The second part is that one gets used to listening and feeling the faints in the other person. They slump - and in Jan's case, sometimes stopped breathing.

    I learned to sleep so lightly that I could detect the slump as it happened.

    On a couple of occasions I thought she had died, so heavy was the faint.

    One night, Jan fainted 6-7 times, the peculiar thing being they happened at hourly intervals. The final faint I managed to predict to the second. Don't forget, Jan was sleeping, and thus not responding to my expectations.

    No medic has ever taken these descriptions seriously as far as I know. Mostly because they do not fit their narrow interpretation of symptoms. We know about fits, so it must be a fit, is the line they take.

    It was VERY frustrating!!!! as well as distressing.

    At one time they fitted her with an ambulatory heart monitor, and while she was still in the hospital she fainted. THEY thought she had arrested. The monitor was on her at the time but they learned nowt as it just went dead.

    Jan felt the faints coming and often said she could feel 'something rising' within her. I taught her to hit the floor asap so as not to fall, and she often controlled them this way.

    These days Jan does have fits.
     
  3. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Many thanks for sharing this with me Brucie, but sorry for bringing back such memories.

    David always says he feels warm and clammy then down he goes. I too have instructed him to lay down asap even if we are in the street.

    At last though I know of someone else who has experienced such events and I do thank you for that. It obviously does go with the diagnosis! Likewise David was fitted with a heart monitor, but he wouldn't "perform" while wearing it!

    Bless you and yours Brucie. A big thank you for sharing.

    Katie
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Katie

    a pleasure to share this particular info, especially because at last there's someone with the same story out there! I've waited a while.

    Amazing how it helps to know you are not alone.
     
  5. janew

    janew Registered User

    Mar 28, 2005
    51
    Dear Katie & Bruce

    Thank you for the info. I was wondering if I was alone with this. It only happens very occassionally - always in Church. On Sunday we were singing a hymn and next thing she had slipped under the pew. Luckily the preacher was an ambulance man so he came to check her over but other than she was very pale she was fine. I just put it down to it being very hot in Church.

    I did ask the doctor a while back but he said as it didn't happen very often he could not check it out.

    Best wishes to you all
    Jane
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    apparently Jan had been a fainter when she was a teenager and the doctors thought that it was possibly her hormones playing her up. Grasping for straws.

    Also, it seems that school assemblies - as well as church services - are common places for girls and women to faint. Never ever saw anyone else faint in church though....
     
  7. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Bruce
    I have been doing a great deal of thinking about these faints.
    When I first knew Peg she would be about 17 and she used to faint on a regular basis.That was put down to girls problems.
    The faints became less frequent as she got older,but she still fainted.
    She did it reguarly in resturants and this was put down to lack of food in the day and then a rush of blood to the stomach.
    I am glad too say that she has not fainted now for years although she did have a TIA a few years back.
    Makes you think?
    Norman
     
  8. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Fainting

    Dear Katie,
    I posted a very similar question under the title of 'fainting' on Dec 9th.
    I am still puzzled that we (like you) were not taken seriously, and will always wonder whether a different GP might have had a helpful suggestion for us. :confused:
    It's just good to find confirmation that we are not as freaky as we felt at the time. I remember leaving the surgery with the distinct feeling that we were considered time-wasters and hypocondriacs, in spite of the fact that we rarely visit the surgery at all.
     
  9. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Everybody

    Many many thanks for your responses. At least now David and I do not feel so alone in this situation. For too long we have felt like time-wasters when visiting our GP/Consultant medics etc. Can't find a cause is not an acceptable answer from a doctor! It happens and is very unsetting when it does occur both for me and especially David.

    What a wonderful bunch of TP's we have out there.

    It is only by talking to others do we find out we are not alone in this awful disease.

    Love to you all from Katie and a big big thanks from David.
     
  10. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    Fainting

    Dear All

    Do the faints follow a particular pattern? I know that Brucie mentioned after eating, which is often seen with underlying blood pressure problems. Can't explain the fainting in bed though. Was this associated with any other symptoms? I'm quite intruiged I have to say. Will scroll through the text books at work and see what I can find.

    Take care love Katex.
     
  11. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Hi Kate

    David goes very pale extremely quickly, feels warm and his arms, yes arms, go very clammy,and then down he goes. It happens in seconds. It happens outside, indoors. He wrote off two company cars on the M1 motorway. No one else involved. Heart specialist said he couldn't find anything wrong and said he had probably fallen asleep at the wheel. What a load of tosh!

    David's psychiatrist was the only one to take him seriously!

    David does also suffer with recurrent and really quite bad chest infections due to life-long Bronchiectasis and has had several bouts of pneunomia, but the faints only started in 1996, not something he had as a child.

    Look forward to hearing from you very soon.

    I am now beginning to think IT IS something to do with the start of AD and others should be made aware!

    Katiex
     
  12. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    #12 MrsP, Jul 16, 2005
    Last edited: Jul 17, 2005
    Dear Katie & TP

    Had a quick literature search on faints and alzheimers and I think that your GP should take it a bit more seriously. AD, especially Lewy-Body dementia does appear to have an effect on the control of the heart and respiratory system and can therefore cause syncope, a sudden drop in blood pressure which can also slow down the heart rate. This may explain why Brucie's wife has periods where she doesn't appear to be breathing. I must stress that I haven't fully read any of this research, so can't be certain how good the evidence is.

    Hope this sets your mind at ease a little, it seems that you are right and this should be looked at. I know that where I work we have a syncope clinic run by one of the geriatricians, maybe you have one in your area. Might be worth looking into.

    Will keep looking, love Kate x.
     
  13. mandyp

    mandyp Registered User

    Oct 20, 2004
    150
    Glasgow
    Interesting thread, Mum has also started to faint occaisionally (GP says it's not connected but hasn't given an explanation). When she was a teenager I know that she frequently fainted and was told it was associated with hormones around the time of her period. In the last 10 years, she has frequently had little 'episodes' that have resulted in falls, Dad often wondered if that was connected with what happened to her when she was younger and hormone levels due to the menopause. Perhaps it's all been connected to the AD.....strange coincidence though.

    Mandy
     
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Even GPs can say the most fatuous thngs, and few understand much about the wider effects of dementia.

    The best that can be said by anybody is that faints may, or may not, be connected generally with the dementia.... the jury is out.

    Specifically speaking. I know my wife's faints were connected. How, I don't know, but it was too much of a coincidence that they both started the same time. And they were faints, not fits.
     
  15. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Hello again

    Just back from a long weekend with our son and daughter-in-law in South Wales.

    We have had a lovely time and it was good for our son to see his Dad.

    Faints! They obviously are more common than I first thought. I am now at peace with the fact that David's AD started with his faints in 1996. Unlike us females he cannot blame them on his "periods"!!!

    Seriously though, I think GP's need to listen more and not fob us off. David's second car crash could so easily have killed him and some poor innocent family.

    Glad this thread has been possible.

    Thanks to you all.

    Katiex
     
  16. Matzu

    Matzu Registered User

    Jun 7, 2005
    11
    South Carolina
    Brucie, a neurologist states that fainting during sleep by definition is impossible. Could these have been seizures? I'm from the US and participate in other forums there and have never seen anyone mention faints in connection with AD. I care for my husband who is in Stage 6 and find things like this interesting. I enjoy Talking Point very much but sometimes the terminology is a little different. When you say Jan has fits, do you mean what The 36-Hour Day describes as catastrophic reactions?

    Matzu
     
  17. daughter

    daughter Registered User

    Mar 16, 2005
    824
  18. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Matsu

    Thanks for your post.

    Forgive me if I don't always take what medics say as the final word. They hate things that they can't understand, so they - as we all do - like to put things into categories they do understand, because that is better than being able to come up with no solution.

    I also only take my own spoutings as descriptions based on very close observation of one person over a period of decades.

    Of course, it depends on what you define as a seizure. Most typically a seizure is a fit, and fits are commonly associated with epilepsy. http://www.epilepsy.org.uk/info/types.html

    Well we had neurologists checking Jan out as well, and they all checked out the angle of fits, and epilepsy, and had those tests confirmed some form of epileptic episode, then I'd have gone with that. But they didn't.

    The brain is of course a most complicated part of us, and it affects everything we do. As someone who has never studied the brain and its workings and who is NOT an expert in any way, but who has wondered, thought, agonised, ranted over what was happening to Jan at that time, I look at many of the problems of the brain and their diagnosis and see a jar full of M & Ms [Smarties in the UK].

    Tip out the jar. If there are more red ones than other colours, then I categorise that these M & Ms may have condition A. If there are more green than anything, then they may have Condition B. If there are more orange ones, etc, etc.

    Chance may have it that no-one has ever seen more blue ones than anything else, but should we do so then blue may appear closer to green in colour than to red, so let's call the blue ones green and then we have Condition B. Makes it easier to understand that way. Doesn't mean it is the same though, just that there is insufficient information yet.

    I'm sticking with faints, because I have observed Jan fainting once or twice, way before dementia came on the scene, and I have also observed her faint while conscious since then, and also the faints she had in her sleep. I have also seen her real seizures as her brain has deteriorated, and they are absolutely different.

    If I were to go with seizures, then I'd have to go with temporal lobe http://www.mayoclinic.com/invoke.cfm?objectid=31931A43-1B50-41C2-AF8B9E37305E23CC&dsection=2
    , not petit mal http://www.mayoclinic.com/invoke.cfm?objectid=FF61322D-E4E7-4C51-B7BC3FE4D4758FC3&dsection=2 or grand mal http://www.mayoclinic.com/invoke.cfm?objectid=0B19991C-69E4-488A-A96C808BB0F1F830&dsection=2, but even then, the only similarity appears to have been the rising sensation in the abdomen.

    I guess it is all water under the bridge now anyway.....
     
  19. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Hi

    This topic is quite a discussion point, I am pleased to say.

    David too was checked for epilepsy and narcolepsy. All his tests came out negative! I too stick with the faint theory.

    Katie
     
  20. mandyp

    mandyp Registered User

    Oct 20, 2004
    150
    Glasgow
    Yep, Mum was also checked for narcolepsy I'm more inclined towards faints.
     

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