DLA sleep disorders

bambammy

The NHS sleep specialist stated I did not have to, and on his notes stated he had no concerns regarding it. I do not have cataplexy, and don't experience loss of muscle tone triggered by emotion. Which would be a concern when driving.

Glyndwr wrote: »

The DVLA (p10) state "Cease driving on diagnosis..." (their emphasis)

I would strongly suggest that you stop driving immediately and inform the DVLA as required by law.

sunnyone

bambammy wrote: »

I do have a certain amount of care needs.
From reading posts on MSE, and other advice forums, the care and mobility needs advice as I have read it and been told, is that if you require adaptions, medications, special equipment, ie beds, alternative treatments etc, this DLA money to help with that.
And yes, I would assume that those above would be classed as care needs. I need them to maintain.
My other was elaborating on other such likes I feel my family are burdened with.


You still dont get it and you are still not entitled to DLA from your posts, read what people have said and dont try to make your condition fit the rules, needing money dosnt mean you get DLA.

You MUST give up driving NOW, you are not safe and if you ask Swansea I bet you licence is revoked immediatly.

sunnyone

Ruby_Moon

Emma1973 wrote: »

As part of my overall job I do benefits advice, including filling these horrible forms in, and as with Glaswajen I would go for it, for night time supervision probably.

Having your condition controlled does not mean you are no longer entitled to DLA, having all the adaptions and aids does not mean you are not entitled to DLA. If, for example somebody cant get up and down the stairs, or in and out of the bath without assistance or supervision, the DLA isnt stopped when they get a stair so they can get upstairs by themselves, or grab rails in the bath. Its about care needs not unmet care needs.

And you dont always needs doctors letters or reports, etc, having a private consultant is ok. Out of the past 10 or so DLA and AA forms I've done ony one has required a medical examination (and that was because of an appeal) and 1 required a doctors report. The rest went on what was put on the form.

Theres nothing to lose by filling in the form, remember the golden rule of all welfare advisers though, fill it in regarding your worse days, the one when you have the greatest care needs!

Good Luck!

This is a complete fallacy and should not be said to people asking advice about filling out DLA because you might just manage to void her claim.
You need to fill out the DLA forms honestly and answer every question honestly without placing a "worst day" egde to it.
The decision makers are not stupid and can see through that ploy but are then left with a form that they have no idea of which bits are true or not, so they deny the claim.

OP fill the forms out. Answer the questions honestly in how things affect you day to day and how people help you. If you are denied, then you can decide what to do then however you might be surprised and they say Yes first time...it isn't unheard of.

Ruby_Moon

bambammy wrote: »

The NHS sleep specialist stated I did not have to, and on his notes stated he had no concerns regarding it. I do not have cataplexy, and don't experience loss of muscle tone triggered by emotion. Which would be a concern when driving.

Falling asleep as you have described or even being as tired as you say you are is SOOOO much reason for not driving!!
I do not care what your specialist said, if you are that bloody tired, you should not be driving full stop.
There have been a few people jailed recently for causing accidents due to being tired, not having narcalepsy, being just tired so what do you think would happen to you if you cause an accident??
Recent studies show that a driver can be more dangerous driving when tired then when twice the legal limit for drinking. It was just on TV a couple of weeks back!

Also, to add, it seems as though you are trying to liking your illness to CFS and listing comparisons. YOu say that people can claim DLA when they have CFS but you can't when you have a problem that causes much more tiredness than CFS.
CFS is not just tiredness. It is much much more than that and in some ways is not so different to some aspects of narcalepsy. It is often coupled with chronic pain and dreadful depression which as you might be aware of causes so many more knock on problems.
You need to make a claim based on YOU! I'd advise you to forget anything else you have read on here.

lolababy

Hi it could be argued that you have care needs due to your condition. Having problems with falling asleep when cooking is a risk and would meet the cooking test for low rate care.
What you really need is expert advice. Try your local cab office. Also try benefits and work where you can access up to date benefits advice. Another site is yourable.com.

Glyndwr_2

bambammy wrote: »

The NHS sleep specialist stated I did not have to, and on his notes stated he had no concerns regarding it. I do not have cataplexy, and don't experience loss of muscle tone triggered by emotion. Which would be a concern when driving.

You really don't get it do you . The NHS Sleep Specialist is a specialist in sleep, not a specialist in DVLA rules & the law.

You must inform the DVLA immediately as required by the law. The NHS website says it, the Narcolepsy website says it, the DVLA website says it & so do others related to the condition. The DVLA Medical Examination Report even specifically lists narcolepsy Section 2 Q3.

Oldernotwiser

lolababy wrote: »

Hi it could be argued that you have care needs due to your condition. Having problems with falling asleep when cooking is a risk and would meet the cooking test for low rate care.

Too tired to operate a cooker but perfectly ok to drive a car! That's a seriously scary thought!

Invasion

Oldernotwiser wrote: »

Too tired to operate a cooker but perfectly ok to drive a car! That's a seriously scary thought!

Precisely. If you're having to stop driving suddenly, on a regular basis, due to being just about to fall asleep then you are not safe to drive. How would you live with yourself if you were to cause an accident where someone else became permanently disabled because you were driving when you're so tired.

Also, you have a sleep disorder... why are you quoting things about mitochondrial dysfunction?! And once again, it's not a CFS diagnosis you have, so stop comparing your sleep disorder to it!

I have severe/moderate ME (which many call CFS) I'm 18 and I rely on my mum to wash my hair, help me bathe (which, incidentally I can only manage every 2-3 weeks because of how utterly exhausting it is) push my wheelchair, put on my socks, the list goes on, because I am in so much pain and my muscles don't work properly. It is SO SO much more than "being tired" I've had a CONSTANT headache for the past 3 years, and I've been using a wheelchair for all outside mobility needs since I was 16 because my legs give way and I collapse. I get migraines at least twice a month and I spend most of my day in bed, feeling like death warmed up, some days I can't move my legs. Doing anything, seeing a friend for an hour, has knock on effect for days, sometimes weeks after, where I can only get down the stairs on my bum like a toddler, and crawl up, where I can't sit up for longer than 15 minutes, where I can't read, and can't tolerate anyone having a conversation near me because I'm so noise sensitive. I also suffer from insomnia and disturbed sleep patterns, but I do not say I have a sleep disorder.... You have not been diagnosed with CFS (or at least that's not what you said in original post, but that's changed enough times now!) I am sick.to.death of people thinking CFS or ME, or whatever is "just" being tired!

magicstrawberry

[FONT=&quot]

I have tried. After disputing my B12 injection, malabsorption and other such likes. I was advised to refrain from all supplements for 3 months, and they retested.


~I also approached the private specialist for a test to confirm. Who used the http://www.biolab.co.uk/ The NHS won't supply this treatment because of the policies and political debates regarding the need for treatment relating to symptoms.

[/FONT]

[FONT=&quot]Price Enough for[/FONT][FONT=&quot]
[/FONT][FONT=&quot]BioCare multivitamins/minerals x 90 capsules ([/FONT][FONT=&quot]negligible amounts of minerals)[/FONT][FONT=&quot] @ £18.26 3 months [/FONT][FONT=&quot]
[/FONT][FONT=&quot]Igennus VegEPA 60 x 500mg caps (contains fish oil) OR @ £10.93 [/FONT][FONT=&quot]dose: 8 a day for 3 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]BioCare Essential Fatty Acids caps vegan 120 caps @ £14.38 2 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]BioCare magnesium ascorbate (neutral form of vitamin C) 0.5grams x 180 @ £20.70 45 days[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Ascorbic Acid powder (acid form of vitamin C) 500 grams @ £25.00 8 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot](clearly this is far less expensive, but some people do not tolerate the acid form)[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Vitamin Research Vitamin D3 1,000i.u 250 caps @ £12.94 4 months [/FONT][FONT=&quot]
[/FONT][FONT=&quot]Vitamin D concentrated powder 100g @ £8.97 100 days [/FONT][FONT=&quot]
[/FONT][FONT=&quot]Magic Minerals 405gms @ £18.40 approx. 80 days[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Solution for Sensitive Stomachs 100g @ £13.80 3 months[/FONT][FONT=&quot]

[/FONT][FONT=&quot]Bolt on extras for mitochondrial failure:[/FONT][FONT=&quot]
[/FONT][FONT=&quot]D-ribose pure powder – 500gms @ £26.45 approx. 6 weeks[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Acetyl- L- Carnitine pure powder – 120gms @ £11.50 approx 2 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Puritan’s Pride Niacinamide (vit B3) - 500mgs x 100 tablets @ £ 5.75 3 months [/FONT][FONT=&quot]
[/FONT][FONT=&quot]Healthy Origins Co Q 10 - 100mgs x 60 gelatin capsules @ £12.08 20-60 days [/FONT][FONT=&quot]depend on dose[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*DIY injected magnesium 50ml, lignocaine 20ml, 100 insulin syringes, sharps bin - @ £46.13 100 days[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*DIY injected B12 30 ml, 100 insulin syringes and needles, sharps bin - @ £36.58 2 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*B12 injection 30ml @ £16.10 2 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]* Magnesium sulphate injection 50ml @ £24.50 100 days[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Lignocaine injection 20ml @ £1.15 approx 100 days[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Syringes and needles 0.5ml 10 x 10 @ £18.98 [/FONT][FONT=&quot]
[/FONT][FONT=&quot]Sharps bin 1 litre @ £1.50[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Methocobalamin 1mg/ml 30mls @£36.23 2 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Methocobalamin 5ml/ml 10mls @£39.33 2 months [/FONT][FONT=&quot]
[/FONT][FONT=&quot]Shot-O-B12 sublingual spray @£20.71 80 days[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Magnesium Citrate powder 300grams @ £ 9.20 2 - 3 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Magnesium Oxide powder 330grams @ £ 5.75 2 - 3 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Magnesium Chloride powder 300grams @ £ 9.20 2 - 3 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]BioCare Magnesium EAP2 Capsules 300mg @ £16.68 1-2 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Magnesium Sulphate crystals (for nebulising) 60g @ £11.50 2 months[/FONT][FONT=&quot]

[/FONT][FONT=&quot]*Chromium drops x 30ml @ £ 9.20 2 months [/FONT][FONT=&quot]



[/FONT][FONT=&quot]Bolt on extras for poor antioxidant status[/FONT][FONT=&quot]

[/FONT][FONT=&quot]*Zinc drops x 50ml - @ £11.50 over 6 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Copper drops x 30ml - @ £ 9.20 8 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Manganese drops x 30ml - @ £ 9.20 8 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Selenium drops x 50ml - @ £10.93 over 6 months[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*(also B12 injections, co Q 10, A L carnitine)[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Puritan’s Pride Glutathione 250mg 60 caps @ £14.95 2 months [/FONT][FONT=&quot]

[/FONT][FONT=&quot]Action Against Arthritis (and osteoporosis)[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Devil’s Claw 2 gms, Glucosamine 2gms, strontium 250mgs, [/FONT][FONT=&quot]
[/FONT][FONT=&quot]boron 20mgs, organic silica 420 mg, vitamin D 5,000iu x 420g @ £27.03approx 80 days[/FONT][FONT=&quot]
[/FONT][FONT=&quot]AAA capsules 500mg x 300cap @ £27.60 depends on dose[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Osteotrace (Arthrotrace ) 90 caps @ £15.28 30 days[/FONT][FONT=&quot]




[/FONT][FONT=&quot]Sleep problems[/FONT][FONT=&quot]

[/FONT][FONT=&quot]Melatonin (Puritan’s Pride) 3 mg x 120 caps @ £ 5.75 40 –120 days[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Nytol one-a-night caps x 16 @ £ 3.51 [/FONT][FONT=&quot]
[/FONT][FONT=&quot]Nytol herbal 30 tablets @ £ 4.32 [/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Valerian x 100 @ £ 6.67depends on dose[/FONT][FONT=&quot]

[/FONT][FONT=&quot]Gut problems[/FONT][FONT=&quot]
[/FONT][FONT=&quot]Kefir sachet x 1 @ £6.00 a life time! [/FONT][FONT=&quot]
[/FONT][FONT=&quot]Hyperventilation[/FONT][FONT=&quot]

[/FONT][FONT=&quot]Potassium bicarbonate (Sando K) x 100 - @ £11.50 12–25 days[/FONT][FONT=&quot]dep on dose[/FONT][FONT=&quot]
[/FONT][FONT=&quot]*Zinc drops as above[/FONT]
[FONT=&quot]Quote:[/FONT]
[FONT=&quot]Originally Posted by Invasion [/FONT][FONT=&quot][IMG]file:///C:/Users/INVISI%7E1/AppData/Local/Temp/msohtmlclip1/01/clip_image001.gif[/IMG][/FONT]
[FONT=&quot]OP, the majority of physically disabled people, even when on painkillers/receiving treatment are in pain and still suffering considerably. 3 days functional is a considerable amount compared to many disabled people.

The vitamins etc that you're on.. If you're still having so many problems, is it worth evaluating whether there's any benefit from being on them, and therefore money to be saved? I'm not saying this is the case, just worth checking.[/FONT]

[FONT=&quot]

[/FONT][FONT=&quot]I Just want to ask you may have answered already but is the above list what you are currently on or what you have taken over a course of time. Also did a Doctor recognised by the GMC say its ok to take these? i understand fully that it is your condition and that im far from an expert but of my scientific background some of these chemicals although some are described to have beneficial properties some seem to contradict each other or i don’t see where you would be getting benefit from it for example the 8 types of magnesium? and also the Lignocaine injection just baffles me as its a local anaesthetic and antiarrhythmic drug? so i think i missed something there unless you have some other condition and i really don’t have to tell you how dangerous this could be if taken not under a proper doctors supervision.

Anyway regarding about the possibility to claim DLA you can claim if you have substantial care or mobility needs. In theory for example you sleep walk and you could be at risk i.e falling down the stairs then in theory you could try but i would think it would be hard to get a result.

good luck and best wishes with improving your health issues [/FONT]

[FONT=&quot]Magicstrawberry[/FONT]

pipkin71

Oldernotwiser wrote: »

Too tired to operate a cooker but perfectly ok to drive a car! That's a seriously scary thought!

I was just going to post similar to your comment.