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NotTooLate blog

canary

Registered User
Feb 25, 2014
12,575
South coast
Ah, I wondered whether you are getting Temporal Lobe epilepsy, Richard - my OH does too, from a road accident many years ago. If you are coming off anti-epileptics then hallucinations as part of a seizure are almost certainly going to happen.

Personally, I am surprised that they are considering taking you off all the medication - I would have thought that you would need some to keep the seizures under control.
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
PNG image 161.png


My son and daughter are both determined as my Carers and even have Power of Attorney in regard to my finances and health, but I don’t think they care!

Let me clarify, they don’t need to care yet and care in the sense of looking after me totally! They of course care for me, as I care and love them. I think this a very important distinction when we use the word Care and Carer.

I see the word carer used for people that are looking after someone that has been apart of their life for so long, that they cannot image a time without them, but this type of care is different. When they were together before dementia devastated their lives, they cared for each other, it was a mutual, bonding existence. Now, the carer, looks after the other, decides for you, enables you to live, it becomes totally one sided and dependant on the Carer alone.

This Carer, is governed by love and can render the hardest lives alone with someone else.

Then there is of course, the Carer in the Care-home, or as a part of a community system. I think these play a vitally important role when dealing with sufferers of dementia. A true carer, of this type, see their role as a vocation, rather than just a job. This, I think, is a good way to assess a care home, or carer. Ask yourself, do they look, or act as if they see your loved one as a job. I do think most are first class and truly do care, or at least I hope so!

Then there are those like me, that liked to be cared for, who doesn’t, and love to care too. But, do I need the care in the sense of being controlled, or governed, at this moment in time… then I have to say no! What I need and get from my Son and Daughter, is total support. The talk to me, with me and we share everything. They know what I want as for as life goes and happily except my wishes. This does not mean I have free run on anything I do. I know that often I’m not really level headed and somethings just can’t happen. Such as, driving, some days I think I could just get it the car and drive away, but in reality this would be so dangerous. My son and daughter are my sanity. They support me, they guide me. They do care, but the greatest thing is they support me, to be me and help me Live with my Dementia!

I have Supporters and not Carers… this is a distinction that is really important when you try to consider someone that is suffering with the symptoms of some form of dementia. You have to assess, do they need care, or support? I think often the difference is lost in confusion and this means what is thought to be needed by the sufferer, is not really what they need! We also have to be aware that the time between support and care can vary and we may need care with somethings and support with another. This is a balancing act we hear about all the time. I think my clinic has a clear demarcation between the two and only those needing Care, need the attention. Those of use that require support… is another matter!

For Fellow People With Dementia
 

Weasell

Registered User
Oct 21, 2019
343
Is now the right time to come off epilepsy medication?
could you postpone your plans?
if you are determined to proceed, do you have access to an epilepsy nurse.
it must be an epilepsy specialist ,dont waste your breath on a Gp who not think well of the question.
if you do then ask them what their opinion of using shoe smelling to shorten the length of a tonic colonic seizure is?
let me be very clear I am not telling you to do this, I am telling you to discuss it with an epilepsy specialist.
The problem with this method is you are under going a seizure you need the support of another person to facilitate it.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,911
Bristol
I like the term supporter, rather than carer, @NotTooLate. There was woman who used to come to a carers group I went to and she looked after her son, she said she was just his mum and not a carer. IT does though give you carers assessments, have you had a care needs assessment and your children a carers assessment in case there is anything any of you need?
The ladies who come in to help my partner with her personal care are definitely not controlling, but the good ones know how to gently persuade her to have a shower or a bath. Most, I have to say, are dedicated and conscientious.
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Hi both and thanks for comments!

I’m not coming off my epilepsy medication yet, but I do plan to try!

As for support, that stopped when my neurologist moved from the QE and haven’t seen anyone since. Tablets just churned out as usual! 🤨

Main reason I’m trying to come off medication, the same thing over and over, another clinic, another doctor and another lot of tablets!
 

Lawson58

Registered User
Aug 1, 2014
2,165
Victoria, Australia
Hi again,

Firstly my husband was not at all cooperative when it came to getting an assessment because there was nothing wrong with him. According to him, I was making everything up and what I wasn't making up, it was all my fault because I was always criticizing him all the time. He was totally against any assessment. This was very destructive for our relationship and he fought me all the way about seeing a doctor.

My GP was wonderful in getting my husband to agree to having an assessment which took quite a while. When the consultant told him that he had Alzheimer's, he immediately interpreted that as meaning that he had only a little bit of dementia. Again, the denial. He didn't believe that he had it even after the doctor told him.

His mother had Alzheimer's, though from what I know now, he is very different to the way she was but I think his fear of being like his mother blocks the reality of his situation.. I think over the years, he has discussed Alzheimer's with me about 4 times, one of which was when he blithely described my Alzheimer's as not being as bad as his because I was a bit younger.

He has played cards all his life and grew up in a family of bookmakers. There is a strong connection between maths and cards so it is his absolute strength. So bridge has been a lifesaver for him and his reason for getting up in the morning.

His consultant always tells him to use it or lose it so we can only hope that he continues to do well. His Alzheimer's is quite different to most others in that his early memory has been the one that failed first so we are all fumbling around in the dark a bit.

So you are one up on him in that you are very aware of your condition but I would just like to say that I think that is a good reason not to give up.

Have you checked our Norms thread? He has done some wonderful things since his diagnosis. Worth a look.
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Here is what I take everyday and as you will see, I take Gabapentin, Pregabalin, Levetiracetam and Lamotrigine for epilepsy, so this is the reason I have to come off this stuff... it's killing me!



Aspirin 75mg 1 daily in morning HEART
Anti platelet agent. Stops blood clotting. Following heart problems 2007 and stent fitted.


Atorvastatin 80mg 1 daily at night Maximum Dose HEART
Statin. To lower cholesterol in blood. Following heart problems 2007 and stent fitted.
To be used when diet and life style fail to achieve lower cholesterol.


Bisoprolol 5mg 1 daily in morning HEART
Beta blocker. Protect heart from too much activity. Following heart problems 2007 and stent fitted.
Not to be used if heartbeat below 60bpm?


Candesartan 16mg 1 daily in morning HEART
Relax and widen blood vessels. Help to lower blood pressure. Makes easier for heart to pump blood. Following heart problems 2007 and stent fitted.


Bendroflumethiazide 2.5mg 1 daily in morning HEART
Water tablets. Reduce fluid retention. Lower blood pressure.


Glyceryl Trinitrate 500microg when required. HEART
Helps with heart pain and breathlessness


Donepezil10mg1 daily at night DEMENTIA
To help mild or moderately severe dementia
Slows down the breakdown of acetylcholine in in brain. Acetylcholine = neurotransmitter… vital for brain cells to communicate


Risperidone 0.5mg 1 daily at night ANTI-PSYCHOTIC


Betahistine16mg 1 – 3 times daily Morning, afternoon and night. Ménière’s
Vertigo, Tinnitus, Hearing loss. Helps blood pressure in inner ear. If I miss I get continued awareness of blood flowing in my head at each heartbeat.


Cinnarizine 15mg 2 – 3 times daily Morning, afternoon and night. Ménière’s
Bad Nausea, Vertigo, Tinnitus, Hearing loss. Helps blood pressure in inner ear.


Gabapentin 300mg 1 – 3 times daily Morning, afternoon and night.EPILEPSY AND NEUROPATHIC PAIN


Lamotrigine 150mg 1 twice daily Morning and night EPILEPSY
Blocks signals to the brain that trigger epileptic seizures


Levetiracetam 1.5g 1 twice daily Morning and night EPILEPSY
Help treat seizures predominantly from left temporal side if brain.
Add-on to Lamotrigine to help tonic clonic seizures. Grand Mal


Citalpram 40mg 1 daily at night DEPRESSION
SSRI Helps with panic attacks and depression


Mirtazapine 45mg 1 daily at night DEPRESSION
Antidepressant


Venlalic XL 75mg 1daily in the morning DEPRESSION
SNRI not sure who prescribed this. Severe side effects … increased episodes of severe muscular pain in body, increased Ménière’s problems, either sleeping all the time, or not at all. Took long time to settle


Lorazepam-1mg 1 twice daily Morning and night EXTREME ANXIETY
Helps with anxiety, stress and panic attacks


Pregabalin 100mg 1 twice daily Morning and night SEVERE NEURALGIC PAIN
Helps against hot, sharp, toothache like pain, in right side of face, ear, eye, arm and hand, teeth and gums, lower back, groin, backside, back of leg and inside leg, below foot.



Omeprazole 20mg 1 daily in morning ANTACID
Reduces acid in stomach. Protein pump inhibitors. .


Salbutamol 100 micrograms every 4 hours ASTHMA


Salmeterol 50 micrograms 1 twice daily ASTHMA


Cleaning Modulite 100 micrograms 2 twice daily ASTHMA


Senna 7.5mg 2 daily at night


Ispaghula husk 3.5 1 twice daily


Micro-Enema 5ml every other day
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Hi and many thanks Lawson,
My Grandad had Senility on his death certificate and according to my mother, my dad died with the fairies.... never knew what that meant... til now!

I'm aiming to stay aware as long as I can!

I will check out Morms thread.

Many thanks
 

Wordy

Registered User
Mar 27, 2020
20
Oh boy, Richard. You do have more problems than you deserve. I hope you are able to get the balance that suits your body and you. No wonder this site is a real asset to you. I found it cathartic just to write down how I felt, which is what you are doing too. Sometimes there isn't a clear answer to action but just people to share your experiences with. People that may have an empathy because of their own experiences. Hope your day so far has been as better as you hoped ❤
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Good Morning Wordy and thank you for your reply.

Balance is the key, or so I believe. It is certainly an imbalance within me that is causing the my problems. Now, finding out what is causing that imbalance is another matter.

This is the second time I’ve come to the site and in particular, this group, I have Dementia. Both times I have come in search of those suffering the symptoms of dementia, in hope of learning, sharing and hopefully helping each other in learning to live with Dementia. However, what I have found is a distinct lack of sufferers. My thoughts are that there is a point where those suffering with dementia, move from a time when they can in many ways be independent, to a point where they are in need of care. From this point the care just increases in need. I think that maybe forums like this are more about those that are in that vital caring role and not necessarily for those still able to help themselves.

Someone here made a comment, that made me think, they said, someone they were caring for, was in denial. Could that be the reason I’m finding so few. There is a greater number of people suffering the symptoms of dementia, but a majority of which are in denial of it, so don’t want to share, learn, or seek help?

The only thing about this denial idea is, are they truly in denial, or are they oblivious to it?

I find that writing down my thoughts and ideas helps greatly and as you say, very cathartic, but I also do it as another example of keeping my brain active. I’m a big believer in the this idea, Use it of Lose it! I’ve never written a blog before, in fact I couldn’t have told you what a blog was. This however, was one of the reasons I started it, it was new, novel and gave me a metal challenge.

You’re right, there isn’t always a clear answer to action, or even the need. As for people that can have empathy, such as carers that have gone through, or struggling now, with loved ones that are lost to dementia, they are a fantastic source and comfort often, but I need to know what I am going through, is what others are going through… I need to hear their words. I hope that makes sense?

I try and get as much enjoyment from each and every day as I can. I hope you are successful in doing the same. Please stay safe.
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
I last reduced my Gabapentin three weeks ago and have just started week 4, still on 200mg in the morning, 100mg in the afternoon and 200mg at night. This doesn’t sound like a lot, but it has a vice like grip on me. With the morphine, it seemed to be more a physical thing, I could feel the physical differences that it was having on me as I slowly reduced it and this gave me something to work with, but this stuff, it’s playing with my mind!


I suffer with hallucinations, but these come in all forms, what I see, hear and feel. Since starting to reduce my Gabapentin intake, these have become increasingly worse. I find I’m panicking for no reason, something I think I see, hear or feel, just sets me off, but I don’t know what it is. I often wake in the night with my heart beating like mad, I’m sweating, just like the morphine, sweating and cold, this just turns me upside down.


My thought was that in a few weeks this would settle, but it doesn’t seem to be. To change this, I have to take the next step and reduce the Gabapentin again. It is the morning dose I’m thinking of changing, from 200mg to 100mg and I intend to start next Monday, 6th April. I’ve set this date as I’ve got to work myself up to doing it!


I would like to hear from anyone that has gone through this with Gabapentin, or any of the other named products containing the same medication. Please fill in the Comments form below.

My Blog with all my post about, Living With Dementia


What is Gabapentin?
Gabapentin (generic name: Neurontin) is an anticonvulsant medication prescribed for the management of seizures, nerve pain associated with shingles, and restless legs syndrome. It has a number of off-label uses, including neuropathic pain management, migraine prevention, and treatment of alcohol dependence.
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
I had to wait a bit today, wasn’t light enough till about 6.30am, because of, Summer Time and the clocks going forward an hour.

Well, I’ve done my mile, avoiding anyone on the way, and about 20 minutes later I was back and feeling really pleased with myself.

Still taking a toil on the muscles, but that’s ok, it will get better as my body strengthens to the challenge.

The biggest challenging part at the moment is getting myself enthused enough to do it in the first place. I often find myself trying to talk myself out of it, looking for any excuse! I think this is what a lot of people suffer with when it comes to any form of exercise, especially in the initial stages, but it does get better!


When I was doing my five miles a day before, it would the first mile that was though, feeling as if I was going up hill and through treacle. There is no denying it was a struggle, but then, it’s like you get this whoosh and away you go. My body felt as it was thriving on the exercise. I’ve heard some people call it a high and I can understand why. The downside to this, if you can really call it a downside, is I found it hard to stop. I kept thinking, I could do just one more lap. I’m looking forward to getting to this point again and it’s that, that keeps me going!

My Living With Dementia

If you are still doing your own Marathon, then well done and don’t doubt yourself, you can do it!
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,130
Yorkshire
hi @NotTooLate
I have no experience to offer
but must admit to being concerned for you
I hope you are checking each reduction with your doctor and reporting back everything you describe in your post ... it's really important that the doctor has a fully up to date picture of how things are with you
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
A short while ago I filled in a survey that was aimed at those suffering with symptoms of dementia. I believe that it is an important part of survey, that it was completed by those with dementia. I did ask about the hopefully growing results, but was told they don't have details of individuals. I just want to know, if anyone can tell me the numbers of people that have completed the survey so far?

Also, as I am desperate to contact other sufferers, so could a link to my blog, or contact tag here, be added to the survey as an option for those participating to contact me, or visit my blog to share and learn about how we suffer this thing together!?

Never Too Late Blog
 

DesperateofDevon

Registered User
Jul 7, 2019
2,675

Not a good day for my phantoms. Not seeing more so much as hearing things. I’ve started to hear Finn, calling, a sort of little yelp. I know it’s him, but then I know it can’t be. Finn use to help me with this. If I saw, felt, smelt, heard, or sensed things, I would look at Finn and if he didn’t react, I knew I was ok, but now I don’t have my little helper.

I’m told that these are nothing that exist outside my own mind and I try to believe this. You know how when you dream, it is real, regardless of how strange, then that is what it is like for me, even when I’m awake. I take medication for this, but I don’t think it helps, it certainly doesn’t stop it.

Certain things happen often, so often that they have become normal. My Mum over my right shoulder, I don’t see her, but I sense and hear her there. My constant spies at the bottom of the garden, just behind the shed. The voices at the front door, the shadow behind the curtain in the bathroom, that is not there when I move the curtain and my morning call, ‘you got to get up, you got to get up…… I see things scurry passed, gone before I see them, the spiders, or the legs just sticking out, moving, the clicks, bumps, things moving, scratching, the breaths, sighs, moans that continually haunt me.

I think this is more of a problem, because I don’t have Finn as my spirit guide. I have no way of knowing if what I see, hear, smell, feel, sense, is real, or not. I know the more it happens and the more I become aware, the more it seems to happen, but that’s no help!

I also know that this has got worse since I started reducing the Gabapentin, so I feel that this has something to do with it.

The horrible thing is, I can’t shut them off. I can’t cover my ears, keep my eyes closed, refuse to smell, or close my mind to feelings.

I’m getting stressed and jumpy, so if anyone has any suggestions or idea, I would be very grateful? Please?
((((((hugs))))))
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
I have dementia, but it took years before the diagnoses was made. I didn’t even consider that this could be dementia, until the last few years and after being sent for these strange assessment tests. The problem was, that symptoms I was experiencing during this time were getting worse, but nothing was being done. When I see others at the clinic, I think, it’s too late. Even I was told this…. it’s too late! It was a major turning point in my trying to understand and deal with this horrible thing. However, if this is the case, surely it would be better to start dealing with the symptoms that lead us here, before it becomes, another case of… too late!?

It is well known that the underlying causes that lead to dementia are often slowly manifesting themselves decades before the signs and symptoms start to show. It is also clear that evidence is growing that a lot can be done to change this situation, through life style changes including diet, exercise and keeping are brains active. So why is nothing done?

What I am trying to do is to learn everything I can about my so called dementia and try to live with it, deal with the possible causes of it and change things that I can, that maybe help me to live a fuller life in the now. As a part of this I am trying to share my thoughts, ideas and hopes with other sufferers of dementia. I have started a blog, that cost nothing, has no adverts, belongs to no company and does not require you to sign up, or give any details. It is there for you to check out and see if there is anything that can help you! You may then have an idea that you would like to share to, well that is what I hope?

My Blog. Living with Dementia
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
I’ve just realised that the clinic that I am attached to for Dementia Care, hasn’t been in touch since this epidemic started?

Now, I know all NHS Staff are busy, they always are, but I’m feeling a bit isolated from them at this moment in time.

This is a strange one for me, because I don’t really like going there anyway. I don’t have a nurse, as the last one was more into her social life and would spend our time together constantly texting, oblivious to what was happening in my life. As for note taking, what notes!? I’m also aware that the doctors cannot do anything, other than ask if I’m ok, or talk to my son and daughter as if I’ve already gone.

When something comes along that I can try, then I want to hear, but until then, I’m happy battling this alone, with the support of my son and daughter.

Really I’m not that bothered that I haven’t heard, but then I get to thinking, there are lots of others out there that are suffering with, or looking after someone with Dementia that is far more severe, are they being looked after?

My hope is that the support is there for those that need it!
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
PNG image 163.png

I’ve change my diet a lot since my diagnoses. I’ve cut out refined sugars and carbohydrates, because what I’ve read seems to suggest is that high sugar and high carb diets are bad for the body and of course the brain.

My eating pattern has change also and again this is based on research. I don’t have breakfast and do not eat till after 12 and stop eating anything after 6pm. This means that I have 18hours without eating.

Firstly, I am not hungry in the morning and sometimes I find that I go way over 12 before having my first meal. However, if I do eat in the morning, I seem to feel hungry all the time, not starving hungry, but picky. A packet of biscuits can go in no time!

This has been my eating pattern for several months and although the amount I’m eating has gone down and generally I think I feel better, I still have this belly fat!?

There is a possible genetic explanation. I’m the youngest of 9, that being one sister and seven brothers and they all have what may be called, a bit of a belly!

My diet is such that I would have though it would have had a major impact on my belly fat, but this doesn’t seem to be true, so could my low sugar and carbohydrates, basically a Keto Diet, not really be working?

There are always new diets coming becoming popular, I would like to know if you have any comments?

I’m thinking of maybe sticking with the eating pattern, time wise, but relaxing the over restriction with sugars and carbohydrates.

It could be a simple case of eating in moderation?

I'm Living With Dementia