DLA sleep disorders

seven-day-weekend

A friend of mine was diagnosed with narcolepsy and had to instantly relinquish his driving licence.

He got it back eventually, when his condition was under control.

As regards the DLA, I think you should just fill in the form and tell them how your condition affects you, how it varies and how often, what help you need to manage it, things you can't do because of it - and see what happens. The worst that can happen is that they say no.

GlasweJen

OP, nytol one a night should never be used in the long term, what pharmacy is supplying this on a regular basis? OTC products are for short term use only, anything long term must be on prescription and nytol is blacklisted for prescriptions (well it is in scotland). Also you appear to be overdosing on some supplements, maybe you should see an alternate therapist to go through your meds with you?

Before i get flamed i have a toxicology degree and work as a medicine counter assistant in a pharmacy.

bambammy

I got the CFS test, because ( it's not available on the NHS ) there's disputes about my sleep disorder. They don't dispute the hospital readings, I have many symptoms that fit different.
When cooking, because the prep of that and the time of day it is at, peak times for fatigue, I go threw to the sitting room to rest, and forget or can fall asleep on the couch. Leaving the oven/or frying pan on. I seldom cook home alone because of it. I pace myself.

The specialist have a legal obligation to notify the DVLA , along with the doctors. They are not concerned.

And yes I do get it. The mortage won't pay itself. I drive to go to work to keep a roof over our heads. Buses and travelling two hours is not plausible. Having to pull over is ususally when i'm pushing myself past my capabilites.

I have downloaded the forms from the DVLA website. I am reduced to tears at the thought of losing everything I have worked so hard for.
The prospect of having to sign on, is enough to reduce me to tears. In the middle of hard financial times, I have no concerns about losing my job, but do now as you all guilt trip and push me on to your moral high horse.

bambammy

Hiya Jen. Also have malabsorption GI tract problems, ulcers to. I did have a few scares with niacin B3. Whole body was burning red hot. Didnt follow proper advice, but soon realised there were high levels of it in the selenium A,C,E supplement I was taking along with multivitamins.

It's melatonin I use. I follow advice from sites like stewartnutrition.co.uk, and books from the library. Doctor didn't have concerns with it, but doesn't know of all the supplements i'm taking. But I will take along my diary notes of what i've been taking every day and see what the doctor says, and see if I can they will refer me to a nutrionist. Which will in opinion just be going through the motions. I eat very healthily, organic, soya. Stoneage diet. It's the malabsorption in the GI tract.

GlasweJen wrote: »

OP, nytol one a night should never be used in the long term, what pharmacy is supplying this on a regular basis? OTC products are for short term use only, anything long term must be on prescription and nytol is blacklisted for prescriptions (well it is in scotland). Also you appear to be overdosing on some supplements, maybe you should see an alternate therapist to go through your meds with you?

Before i get flamed i have a toxicology degree and work as a medicine counter assistant in a pharmacy.

bambammy

Chronic fatigue, syndromes are symptoms of underlying issues!!! Those CFS symptoms I have are down to something other than my sleep disorder ! My mitochondrial function test affirms symptoms.

I experience all you described below and more. Minus the need for a wheelchair, because I maintain my illness better than you seem to be doing. I eat organic, elimate all toxins , use infrared sauna, CBT, don't eat wheat and other allergy foods, supplement on vitamins and exercise. If I don't do these things, I look like dead women walking and feel like a spare part for a horror movie and need to be bodily carried around, and when no-ones around, like you, i've had to use my hands,backside to get up and down stairs! Hence why we're moving to a cottage.

At no point have I said CFS symptoms are just being tired. I feel the same frustrations. But until people are educated, live with or experience a family member going through such like.

Invasion wrote: »

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!

[Deleted User]

bambammy wrote: »

I experience all you described below and more. Minus the need for a wheelchair, because I maintain my illness better than you seem to be doing.

Not nice.

Indie_Kid

bambammy wrote: »

The specialist have a legal obligation to notify the DVLA , along with the doctors. They are not concerned.

According to a bunch of papers I was given 2 years ago, it said "you [the person named on the pieces of paper - me] are responsible for notifying the DVLA of changes that may affect your ability to drive". I didn't need to do this because I hadn't applied for a driving licence and wasn't planning on doing so until I'd been told by a medical professional whether they thought I was safe enough to drive - it turns out they said I wasn't.

Also, I have a friend whose driving licence was taken away from him because he fell asleep at the wheel. You want that?

What I have causes chronic tiredness and have friends who are sensible enough to only drive when they know they're not tired. (my vision is too poor for me to drive)

kinkyjinks

Hi, I feel like I'm kind of able to give an informed point of view on the topic, as my husband has severe narcolepsy with cataplexy and I fill out his forms. I've also researched narcolepsy and the associated neurological conditions in a bid to find the magic 'cure' and studied neuroscience at uni. I can only answer based on my own experience of dealing with various doctors, specialists and my personal form filling.

My husband gets DLA at the middle rate. After an appeal he was awarded DLA because he cannot cook for himself as a result of both the narcolepsy and the cataplexy, he cannot go out alone because the cataplexy is not fully controlled and he has hurt himself in the past when he was out unattended, he cannot use public transport on his own because of the narcolepsy and has woken up at bus terminals in the past. He also needs supervision at night because he suffers from hynagogic hallucinations which can leave him confused and on occassion scared. He also needs to be woken up in the morning at the same time every day and I have to make sure he takes his medications because he forgets very easy and without the medication, he would go back to sleep and become groggier and groggier every time he woke up.

There is also a part on the form which asks you if your particular illness has had an affect on your quality of life, which in his case is considerable as he cannot interact with the kids doing'normal' things like playing football or even playing the xbox with them, because it brings on a cataplexy attack which happens with no warning. If he didn't have cataplexy, I'm sure he would still qualify for DLA, however, it may be at the lower amount


Like people have pointed out, 'if' you had been diagnosed with narcolepsy you HAVE to inform the DVLA and they will review your license, however, I'm a bit confused about your actual diagnosis, a dispute between narcolepsy without cataplexy or idiopathic hypersomnolence? The two illnesses have excessive daytime sleepiness in common but narcoleptics suffer from noticeable periods of wakefullness throughout the night where as idiopathic hypersomnolence does not cause periods of being awake through the night.

I also note that you have been to see a sleep specialist, did you have an EEG? It's one thing to suffer from excessive daytime sleepiness and an entirely different thing to have narcolepsy, which usually is easily diagnosed with an EEG. If you feel like it isn't under control and you have not had a definitive diagnosis and you feel like your condition has got worse then go back to the doctor and demand another sleep study, this time with an EEG because as I have stated, there is no mistaking the sleep rhythmes of narcolepsy. HTH.

Invasion

That's a hideous thing to say, would you say to someone who was paralysed that they weren't managing their illness properly because their legs don't work?! How can you have to crawl up the stairs, and be unable to bathe unaided etc etc, as you claim, but have no need for a wheelchair... and tell someone who has no choice but to use one that's it's THERE OWN FAULT?!

Also, unfortunately there's very little apart from pacing and pain relief that can be done for my illness, I'm under the care of an OT, a paed.consultant neuro and a muscle specialist, all who believe I am managing my illness as best as possible, there's currently nothing that I can do to "maintain" it any better! I've tried many of the things you have, to no effect.

If you have mitochondrial dysfunction then surely you of all people should understand the need for a wheelchair.. Because my muscles don't work as they should...!

jazabelle

bambammy wrote: »

I experience all you described below and more. Minus the need for a wheelchair, because I maintain my illness better than you seem to be doing.

You have absolutely no idea what Invasion does and doesn't do to manage her condition. You are very lucky if you've found a way to help yours, because a lot of us are not so lucky. And that is what it is - LUCK.

It sucks you have a condition too, but judgements like that is what we have to put up with all the time. "Oh just do x, and you'll get better" - but never an answer when it doesn't work.

Why don't you stop comparing and condemning other people for their conditions, and go and get on with yours.