What do I do about my dementia? (UK)

[Cheryl M]

I am 37 and live with my 75-year-old mother, who is also ill but notorious for refusing to see doctors. My cognition is now signficantly worse than hers and is deteriorating each week.

1. I have been on at least 75mg/day of pregabalin for the last four years. The (NHS) doctor and my mother think the inability to think and remember might be the fault of the pregabalin so we're reducing it. Have noticed no effects from that so far other than weight loss and blinding headache,,
2. The doctor suggested referring me to a memory clinic, then had second thoughts and said I didn't appear to be quite demented enough yet. She offered me a CT scan, then became worried, saying that CT scans can *cause* brain tumours via radiation. Any advice?
3. I asked the support worker person (from a care association) if social care is available for people with dementia in my part of the country (west Cumbria). She explained that nobody gets social care for dementia here, not even if they have Alzheimer's. I assume my mother is supposed to look after me until we both get put in care homes - is that right? My mother would be a fairly terrible carer as physical activity wears her out and she hates taking people to the doctor. We currently have a paid cleaner who comes in once a week and changes the beds as well.
4. I just got the PIP decision back from Atos. I'm still on the same rate despite my deteriorating condition; the comments are the usual random gibberish with no relation to what I actually can and can't do. I have been filling in the benefits application forms for the last 15yrs but I doubt I will be well enough to do it from now on. My mother will probably be bad at it as she always says I am about 3x as capable as I actually am! But first things first; should I wait until I have a diagnosis of dementia, then reapply? What if it takes a really long time to get the diagnosis?
5. I'm intestate. (My mother also hates going to lawyers.) I need to make a will and presumably give lasting power of attorney to my mother. What should I put in the living will, though? I'm worried there are all sorts of ME-related issues that I should specify, and neither the lawyer nor the doctor will know anything about them.

I know there is other stuff I should be thinking about but I can't remember it. I've taken some books about dementia out of the library but I worry that they will miss out more important ME-related things.

 

[Moof]

I'm so sorry to hear about your situation, Cheryl. You must be worried silly.

Did you know that dementia symptoms can be caused by losing the ability to absorb vitamin B12 from the gut? I'm wondering whether you've investigated this possibility already.

B12 deficiencies can happen at any age, and aren't always due to pernicious anaemia (an autoimmune condition that can cause dementia, psychosis, and eventually life-threatening deficiency). In my family we're very prone to h. pylori infections, and this can cause malabsorption by damaging the stomach lining. The NHS is appallingly bad at treating absorption issues, largely because they rely on tests that aren't actually reliable, and many people have to self-inject B12.

I had worsening dementia symptoms for three years, including very significant memory deficits and loss of basic skills. My GP wouldn't treat me for the B12 deficiency I suspected was behind it, as he said a serum test had shown higher than normal values (this was due to oral supplementation, which was in my bloodstream but which my body couldn't utilise properly).

I was frightened to death, and in desperation I learned to self-inject subcutaneously from a friend who has Type 1 diabetes. Within three months of alternate-day injections, the memory loss was gone. I also waved goodbye to tinnitus, chronic mouth ulcers, depression, and the additional fatigue the deficiency had caused – it was like coming out of a very long, very dark tunnel. I now inject about once a week.

If you haven't done so already, it's worth asking your doctor to test you. However, the serum B12 test GPs always offer is useless, as you can have perfectly adequate levels in your blood and still be severely deficient at cellular level. You'd need the MMA and homocysteine tests to check for both pernicious anaemia and deficiencies due to other causes.

 

[Mary]

@Cheryl M - here are some of the effects of pregabalin:

Commonly reported side effects of pregabalin include: infection, ataxia, blurred vision, constipation, diplopia, dizziness, drowsiness, fatigue, headache, peripheral edema, tremor, weight gain, visual field loss, accidental injury, and xerostomia. Other side effects include: abnormal gait, abnormality in thinking, amnesia, arthralgia, asthenia, cognitive dysfunction, confusion, edema, neuropathy, sinusitis, speech disturbance, vertigo, visual disturbance, myasthenia, amblyopia, increased appetite, and twitching. See below for a comprehensive list of adverse effects.

https://www.drugs.com/sfx/pregabalin-side-effects.html
So your doctor and your mom could very well be right that this is the cause of your "dementia". You're actually fortunate in that your doctor thinks you might be reacting to the drug - many if not most doctors downplay or dismiss the effects drugs have on us.

I urge you to do some reading about withdrawal from pregabalin - the withdrawal can be difficult and in general should be done slowly. I had to taper off a low dose of lorazepam which I took for sleep and it took me 8 months to get off of it, all the while having horrible sleep problems. But long-term use of benzos is related to Alzheimer's so I decided to stop it.

Headache is a very common symptom of withdrawal from pregabalin (who names these drugs anyways! )

And @Moof is right too about the possibility of low B12 despite seemingly normal or even high B12 blood levels.

 

[Runner5]

I first went to the doctor almost ten years ago with my really huge fear being dementia, and I was in my mid-30's and it was really scary. Long story short they loaded me up on psychotropic drugs and for five very long years I lost who I was as a person, I couldn't work, couldn't care for myself or my kids properly and was basically a lunatic - and then I got CFS.

Trusting doctors with pharmaceuticals almost killed me and I would recommend trying anything else first.

I've had really good luck with supplements and doing my own research and dietary tweaks. I had to write myself notes daily (Google Calendar has reminders and I could go edit > add on to my note for myself the next day) -- I had to go to extreme lengths to remember things at first. Now, I recall things I thought were long gone.

I was told if I did not take Lithium every day I would die of Alzheimer's like my grandmother. Now I feel like my health is in my own hands.

Good luck on your journey!

 

[MEPatient345]

I’m not questioning your diagnosis but am confused reading your description.

Are you calling the cognitive impairment of ME “dementia”? Trouble thinking, remembering, processing information, vision impairment, Brain fog, difficulty w things like filling out forms or cognitive “work”.. these are all symptoms of ME.

Are you looking for a dementia diagnosis bc of PIP or do you have dementia, the disease, separate to ME?can you pursue these benefits with a severe ME diagnosis instead?

 

[LINE]

Toxins involved in immune challenges disrupt neurological processes. Antioxidants can disable the toxins, this would include Vitamins C and E, turmeric has been proven to stop the bad stuff https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2781139/

 

[Moof]

Just to go back to some of your original questions, @Cheryl M:

There are two types of Lasting Power of Attorney, one of health and welfare and the other for financial decisions. They're very worth doing, especially if you're chronically ill, but you do need to be careful about what you include. The more complicated your instructions, the more likely it is the Office of the Public Guardian refuse to register it, because it could become very difficult for your attorney to administer. I was advised on my health one simply to state preferences (rather than firm directions) about things that are important to me, such as a need for quiet, access to the outdoors to experience nature, etc. You can get the forms online.

Your Mum doesn't have to be your attorney, by the way – you can nominate anyone whom you trust. Given that your Mum is in her mid-70s and not well herself, it might be better to think about whether there are any possible alternatives. I know how difficult this is, though, as being an attorney is a significant responsibility and my sister is the only person I've so far felt I could ask.

As well as my LPAs I plan to register an Advance Medical Decision, which needs to be made after the healthcare LPA so that an attorney couldn't override it. For me, this is simply about what happens if I lose the ability to communicate for any reason, and allows me to stipulate that I must not be resuscitated should my heart or breathing stop. Dignity in Dying offers lots of useful advice about these issues.

As for your will, Co-op Legal Services will do it over the phone and by letter, so you don't necessarily need to visit a solicitor's office. As I have no large assets my affairs are very simple, and they're doing my will for £150 less a 5% discount for being a Co-op member (anyone can join for £1, even if they don't have a local Co-op shop – I did it mostly because they give you a significant discount on prepaid funerals!). They're calling me in a couple of weeks to go through what's needed, they'll send me a draft, and provided it's OK, I'll get it signed. If you don't feel up to doing the LPAs yourself, they will also look after these for you.

I used online advice from Fightback4Justice in Bury for my PIP application. They offer subscriptions where you can access dozens of examples of well-completed forms (you can unsubscribe easily after you've downloaded what you need); they'll also, in return for a donation, do the entire application or Mandatory Reconsideration for you. They have two or three qualified lawyers and a very good success rate.

It's crucial to get as much medical evidence as possible to support your application, as even though DWP tells you that you don't need to gather evidence yourself, they almost never contact GPs. Even when they do, they often give the doctor a completely unrealistic deadline to reply, thus ensuring that the evidence doesn't get considered! You can obtain your records from your surgery via a Subject Access Request; I believe it might even be free now, following the new GDPR regulations. I requested mine earlier this year and still only had to pay £12 for the photocopying, so it wasn't hugely expensive.

 

[Alexi]

If B12 levels are above norm according to routine blood test, how can a GP be persuaded to consider the absorption issue at cellular level and instigate injections ?

 

[Moof]

If B12 levels are above norm according to routine blood test, how can a GP be persuaded to consider the absorption issue at cellular level and instigate injections ?

In my case, he couldn't be persuaded. But even he could see the quite enormous difference the injections made; he agreed that I must have been deficient due to inability to absorb it from food and oral supplements, and he offered me 12-weekly jabs after the fact. It's so much easier to just do them myself than to spend two hours travelling to the surgery, waiting for the nurse, then travelling back home, and I need them much more often than 12-weekly anyway, so I said I might as well continue...!

 

[Cheryl M]

Ta all for responding.

(a) I get a B12 injection every two weeks, and have done so (somewhat irregularly) for the last year. I also take oral B12. (It was only by seeing Dr Amolak Bansal privately that I managed to get this. I had a private blood test done showing borderline low B12, so my NHS clinic insisted on retesting until they got a normal result so that they could tell me the jabs weren't necessary!)
(b) So far I've sen a pharmacist about withdrawing from pregabalin, a somewhat surreal experience as she seemed to think I cou;dn't count: "Reduce the pregabalin from 400mg to 300, then to 200, then to 100, then stop." I tried to explain that I've tried quitting before and it hasn't been that simple. It's when it gets below 100mg/day that I'll really be in trouble. Am seeing the doctor again in two weeks, and if there hasn't been significant improvement from the pregabalin reduction we'll be talking about that brain scan.
(c) The failure of all my "thinking" functions has been proceeding steadily and incrementally for at least eight years now. First I lost my long-term memories, then my medium- and short-term ones. Three years ago I lost the ability the picture things visually. Two years ago I lost the ability to appreciate music. This year I have begun finding it difficult to read (despite the fact I have always been hyperlexic). I no longer have many emotions. I have no startle reflex. I can't recall dreams. There are other abilities I have lost, but I can't remember what they are.
(d) I have an ME diagnosis from Dr Bansal. PIP theoretcially is not dependent on your diagnosis (though in practice we all know having a diagnosis of any kind makes a HUGE difference); it is awarded strictly on the basis of what you can and cannot do. While a diagnosis of dementia would probably help with the PIP, they should be giving me the higher rate anyway because I can;t remember to do things or concentrate enough to complete a task. I could reapply straight away (though your benefits are frozen during the application process), appeal (if somebody was prepared to assist me), or wait and see if I get a dementia diagnosis and then reapply. The more I type these things out the more I think I should appeal - assuming I can do that...
(e) I've been taking a lot of supplements for years now including some antioxidants (knotweed, SOD etc). The problem is that they make me sleepy (I took 5g of Vit C three years ago and it knocked me out like a blow to the head - I have built up a tolerance to it now). When I thought I had Lyme disease I assumed that was a Herxheimer reaction - don't know what to think now. I suppose I'd better not start any new supplements while we're waiting to see what tapering the pregabalin does.
(f) Thanks so much to people who offered sympathy and reassurance, but one great symptom of the dementia is that I no longer feel emotion vbery much, so the thought of going crazy and dying doesn't really bother me any more!
(g) Moof, thanks a mllion for all that detailed advice. I'll print it out and show it to my mum.
(h) I forgot to mention that I have never been able to get any serious or in-depth ME testing other than a private brain MRI I purchased five years ago (the company claimed it showed nothing), so this CT scan might be my only chance of getting any measure of my debility on the NHS. The thought has occurred to me that if the scan shows significant damage, the clinic might finally start to take me seriously when I say I;m ill. (If not, on the other hand...)

 

[Hip]

I have been on at least 75mg/day of pregabalin for the last four years. The (NHS) doctor and my mother think the inability to think and remember might be the fault of the pregabalin so we're reducing it. Have noticed no effects from that so far other than weight loss and blinding headache

If you are using pregabalin for the neuropathic pain of ME/CFS, then you might like to consider the supplement benfotiamine as a possible alternative to pregabalin. Benfotiamine derives from vitamin B1 and has been shown to reduce nerve pain (this study used a daily dose of 320 mg for treating nerve pain).

You can get good deals on supplements at HealthMonthly.

Neuropathic pain can also be treated with antidepressant drugs such as amitriptyline, which might be another alternative to pregabalin.

 

[Hip]

In the future, you might also look into treatments for ME/CFS that are used by doctors in the US. Perhaps oxymatrine (another supplement available online) is the most inexpensive and accessible. It does not work for everyone, but when it does work, it can bring major overall improvements in your ME/CFS within around 2 months.

And low-dose naltrexone (LDN) may be worth trying; this is a drug taken in low doses; if you doctor does not want to prescribe it, you can buy it at the reliable online prescription-free pharmacies listed in this post.

 

[Cheryl M]

Thanks, I've tried LDN with unfortunately no effect. Pregabalin was prescribed for anxiety and accidentally produced a remission that lasted about 18 months. The remission has gone (and how!) so I suppose there's not much point in continuing with the pregabalin except for the anxiety issue. I am not feeling very much at the moment so I'll continue tapering the pregabalin and wait and see if those problems come back.

I'll look into the oxymatrine.

 

[Moof]

@Cheryl M, it sounds as if what you need most urgently is a flipping diagnosis – it's outrageous you've been left for so long without one, especially with such an atypical presentation. Every case of dementia (if that's what it is) is different, but it's unusual for long-term memory to be affected first and short-term memory last. If you don't feel you can take on your GP alone, maybe join a community on something like the Alzheimer's Society website? They'll have a lot of experience of this. The NHS always stresses that getting a diagnosis as soon as possible is crucial, so it would be great to hold them to that!

It might be best not to hang too much hope on the CAT scan, you know. My elderly Mum had several falls after the onset of her dementia, and because she couldn't remember what had happened, the hospital always needed to do a scan to make sure she hadn't got a head injury. Her dementia was fairly significant by the time of the final one, but there were still no visible brain changes. Apparently it does show up sometimes, especially with vascular dementia, but not always. Mum had dementia resulting from a brain injury rather than any of the more common types, but the doctors always said her noggin looked entirely normal for someone of her age.

If it is drug-related and you need to taper your pregabalin very slowly, there are a couple of ways to do it depending on what form it comes in. I've had to do two super-slow tapers, one of a particularly evil benzodiazepine my GP gave me at age 16 for ME (that helped with fatigue about as well as you'd imagine!), and the second of gabapentin.

The Ativan was a solid tablet, and I tapered that by filing small amounts off each tablet with a glass file. It meant I could go so slowly that I didn't really have anything in the way of withdrawal at all. It took nearly two years to get the dose down to just licking a bit of dust off the file! – but it worked really well.

The gabapentin came in a capsule, and I started opening them and taking a bit of the powder out with a bamboo kebab stick. I'd take more and more out each week until I'd cut one whole capsule from the dose, then start reducing the amount of the drug in next capsule. This didn't take as long, as the side-effects of reducing the dose weren't as bad, but it was still easier than cutting out whole capsules at once.

EDIT: Obviously, after taking powder out of my capsules to reduce the dose, I did put them back together again before swallowing. I once accidentally swallowed loose gabapentin powder from a capsule that had got cracked at some point during production, and it tasted vile!

 

[Hip]

Pregabalin was prescribed for anxiety and accidentally produced a remission that lasted about 18 months. The remission has gone (and how!) so I suppose there's not much point in continuing with the pregabalin except for the anxiety issue.

Unfortunately it's not uncommon for ME/CFS patients to get a temporary remission from some drugs, only to find the remission mysteriously disappears after some time. I had this myself with Wellbutrin (although my remission only lasted 2 weeks before just vanishing).

I would guess it is also possible you might have built up a tolerance to pregabalin, and that's why it stopped working. If you manage to get off pregabalin, it would be interesting to see if you can gan gain the remission again from this drug after being off it for many months.


For anxiety, you might find the supplements detailed in this thread provide a good solution:

Completely eliminated my severe anxiety symptoms with three supplements!

Worked very well for me.

 

[Mary]

I get a B12 injection every two weeks, and have done so (somewhat irregularly) for the last year. I also take oral B12.

I think a B12 injection done irregularly every two weeks generally is not nearly enough to remedy a B12 deficiency. And many of us have trouble getting enough B12 orally due to absorption problems. I did injections (self-administered) 3 x a week for a couple of years and it made no noticeable difference. I switched to daily sublingual high-dose tablets (5000 mcg.) and noticed nothing. And then I finally tried a liquid methylcobalamin and took it sublingually - instead of just swallowing it, placed it under my tongue, two 5000 mcg. doses a day, and finally noticed a difference. The sublingual part of an oral B12 supplement is very important. Just swallowing a pill would not do much for many of us because of problems with absorption. I took this dose for many months and now I do well with one 5000 mcg dose of liquid methylcobalamin taken sublingually every day.

My B12 levels on blood works were always high, due to the supplements I was taking, but I think very little was actually getting into my cells and properly utilized. On hair analysis, my B12 levels were basically undetectable despite years of supplementation. Also, persons with ME/CFS often require very high doses of B12 for it to be effective. I don't know if this is primarily due to poor absorption or metabolic issues, but it's true for many of us. And the vast majority of doctors will only look at the blood work. In general they know nothing about ME/CFS.

Re getting off pregabalin - my brother was on it for 9 years, at varying doses, but I think the last dose he was on was 300 mg, when he finally tapered off. It took him a year to do it. His doctor told him initially it would take a week. He cut his dose by 25 mg a month. I think for the final 100 mg you should just go more slowly. Maybe try cutting it by 10 mg a month, you'll have to find whatever works best for you. I think it's not uncommon when weaning off a substance to have the last part be the hardest.

 

[Cheryl M]

GABAergic drugs have always made me feel better, but benzos and phenibut stopped working almost immediately and baclofen's effect lessened slowly. I agree it'd be interesting to try coming off pregabalin and going back on it again, but I have to wonder if my clinic would ever re-prescribe it (I don't think they even believe I'm ill, much less that the pregabalin produced a remission).

I'm a bit pessimistic about the CT scan too - I'd prefer SPECT because that is supposed to show the brain dysfunction that comes with ME, but I suppose I can't ask for that? (And I assume it will carry the same risks from radiation.)

I'm boggling at your dedication and ingenuity, Moof. I'm having problems finding a dose of mirtazapine small enough to get me to sleep in the evening without making me sleep in till 2pm the next day. The most obvious solution (get it?!) I've find so far is to dissolve the tablet in a given amount of water, e.g. 15mg in 15ml, which will give you a tiny dose of 1mg if you take 1ml. This has some advantages, because the active ingredient in medicine isn't usually distributed evenly through the pill (I expect capsules are different), whereas if you make sure to shake your solution every time you should be getting a consistent dose. The problems are that the lactose in the pills can make the solution go off and smell, and, as you said, it tastes abominable. Pregabalin comes in doses as small as 25mg and if necessary I'll beg the clinic to prescribe me the expensive liquid form again. I'm glad you got off your benzos in the end.

The anxiety was caused by a combination of two antidepressants causing a catastrophic reaction that I think was serotonin syndrome. This caused hypervigilance which has never really gone away, but at least I'm not panicking all the time any more.

Making a note about the liquid B12. Should I try to find one with the other B vitamins in it as well? And I'm having trouble finding any UK sites that sell oxymatrine...

 

[Hip]

GABAergic drugs have always made me feel better, but benzos and phenibut stopped working almost immediately and baclofen's effect lessened slowly.

That is the trouble with GABAergic meds: the GABAergic system is subject to problems of tolerance, loss of effect, addiction and later often withdrawal symptoms.

Whereas I think if you approach anxiety from the other angle, namely the NMDA receptor (glutamate receptor), this appears to be less subject to tolerance build up, so you don't get loss of effect and addiction.

The theory is that activating GABA receptors relaxes neurons, whereas activating NMDA receptors does the opposite, and excites neurons. So to achieve relaxation, you can either activate GABA receptors, or alternatively you can try to reduce the activation of NMDA receptors.

The anti-anxiety approach outlined in my thread works with the latter, trying to reduce NMDA receptor activation by reducing levels of the glutamate neurotransmitter in the brain, which activates NMDA. Glutamate is released during brain inflammation, which is why I believe chronic brain inflammation may be a cause of generalized anxiety disorder. The approach I successfully used relies on supplements like N-acetyl-glucosamine which I believe may reduce brain inflammation, and thereby reduce glutamate release, and thus lower anxiety.

I summarized this theory of neuroinflammation-caused anxiety in this post.

 

[Moof]

The most obvious solution (get it?!) I've find so far is to dissolve the tablet in a given amount of water, e.g. 15mg in 15ml, which will give you a tiny dose of 1mg if you take 1ml. This has some advantages, because the active ingredient in medicine isn't usually distributed evenly through the pill (I expect capsules are different), whereas if you make sure to shake your solution every time you should be getting a consistent dose. The problems are that the lactose in the pills can make the solution go off and smell, and, as you said, it tastes abominable. .

Great idea – but if you're supposed to take a whole pill every night, and you're supplied with enough to do that, would you actually need to store the liquid? You could just take your 1ml and present the rest as a votive offering to the toilet god! That's if the drug dissolves OK in water; if it won't dissolve evenly, you could just put a little bit of the drug into an empty capsule (you can buy these quite cheaply), and swallow that. Presumably you've already tried melatonin for sleep and found no benefit? It works well for me, and is sometimes the only thing that keeps me going.

If the sublingual route doesn't work well for you, you can buy methylcobalamin for injection from Oxford Biosciences. I'm absolutely fine with injected hydroxocobalamin, but I know a couple of folk with PA who can only keep their levels up with the methyl form. As @Mary has said, frequency is key, especially at the beginning of treatment. For people with PA/malabsorption who only benefit from injections, the Society of Haematologists recommends every other day until there is no further improvement. I guess sublingual treatment needs to be equally frequent.

The most important co-factor for B12 is folate. I eat a lot of leafy greens and take a methylfolate tablet once or twice a week as insurance, and this has been enough to get on top of my deficiency.

 

[Cheryl M]

Yes, magnesium has worked incredibly well for the anxiety a couple of times, but the effect has gone away within 24 hours whenever I've raised the dose (and now I've reached bowel tolerance, so I suppose the only solution would be to go to Breakspear or somewhere and get injections). Inositol too. Melatonin also made me feel good for a few days but I developed tolerance very fast.

Blimey, that's a long thread Will have a go at it soon.

Moof, good point, I could just throw it away whenever it gets manky (though someone was telling me off for flushing meds recently - bad for marine life apparently!!).