DLA sleep disorders

jazabelle

kinkyjinks wrote: »

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.

Any chance of some paragraphs please kinkyjinks? I'm sure what you've put is great, but reading it is turning me crosseyed!

skipsmum

DS has melatonin on prescription, Im sure if the consultant thought it would help you he would prescribe it and therefore it would be free/cheaper.

Re the driving, it is definitely YOUR responsibilty to notify the DVLA if you have been diagnosed with narcolepsy. If you injure someone and you have been told you may have a sleep disorder you will be prosecuted.

[Deleted User]

Hm. It's the driving bit that it concerning me, bit of an anomaly if you say you've been diagnosed with narcolepsy.

The DVLA Guide to the Current Medical Standards of Fitness to Drive states:

NARCOLEPSY/CATAPLEXY
Cease driving on diagnosis. Driving will be permitted when satisfactory control of symptoms achieved, then 1, 2 or 3-year licence with regular medical review. Till 70 licence restored after 7 years of satisfactory control.

Seems pretty clear to me. I had to surrender my licence due to a neurological condition. It was tough but that's the rules.

What does your insurance company have to say about all this?

GlasweJen

OP, I don't mean to be offensive but it sounds to me like you're taking a lot of your information/guidance on management from the internet and taking the advice at face value. You need help, less supplements and you should NOT be taking herbal nytol, nytol one a night and melatonin at the same time, no wonder you get tired during the day when you take so many sleeping remedies (and nytol one a night can cause drowsiness into the next day, it says so on the packet). You're probably reliant on these to sleep at night and i would advise getting your liver and kidney function checked as both organs are probably shot to bits with you taking so much and they will be overloaded trying to metabolise that list of stuff on the last page.

Also why do you avoid dairy/gluten etc? do you have allergies?

The prices you quote for the injections are too high to be on NHS prescription but not high enough to be on private prescription (going by prices in scotland), are these prescribed items or are you buying online?

Most of the supplements could be cut out of your diet if you ate properly and took the injections as prescribed (assuming they are prescribed), people with malabsorption don't need all that stuff you wrote on the last page and even if you did have malabsorption that doesn't stop you from overdosing.

Oldernotwiser

bambammy wrote: »

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.

One would hope that you would feel considerably more guilty if you were responsible for causing an accident!

bambammy

I was out of order, what I said in post number 46. I am very sorry for that.
22 years, I have tried to find, aid ways of getting better, and I more than anyone, like you said, should have known. better.

A few times you have puts words into my posts I didn’t say.

I never said or claimed that I used my hands/backside on those bad days…to get upstairs to bathe!!!!

Like you, the mere task of washing, floors me back to bed, exhausted.
If you were alone in your house, and needed to ‘ go ‘ to the toilet, then you’d suffer the pain to ‘ go ‘ and if I was having that bad a day, like I already said, the kids would fetch me pillows and covers and I’d sleep on the couch.

I never at any point said I had narcolepsy.

I never at any point said I had CFS.

I believe there is more you can do to maintain it better. I have the NHS telling me to take x4 200mg of provigil, and they keep the brain awake. The body is almost comatised when I stop taking the following advice. I strongly believe, ( although it is hard to put into place ) that if you follow Dr.Sarah Myhill’s advice you may possibly have some improvement. http://www.drmyhill.co.uk/cfs_book.pdf

Invasion wrote: »

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...!

bambammy

TY KJ. Upon escaping from the vulture pit, when reading your post, I felt like you were the only one who has fully read and understood my posts.
I have not been diagnosed with Narcolepsy.
I have not been diagnosed with Idiopathic Hypersolmnolence.
They have stated ' probable ' Idiopathic Hypersomnolence.

Narcolepsy, amoungst other symptoms which I don't experience, is when you reach REM sleep under 5 minutes.
I reached it, at 6 minutes.
I!!!!!athic Hypersomnolence - does not have as many episodes of quickly entering REM sleep as someone with narcolepsy.

I had the over night study and day time study. Was suppose to be there til 6pm. They sent me home at 2.30pm. I asked why, she said, ' it was not normal for someone to reach REM sleep as quick as I did, in such short space of tests.

I have symptoms Restless leg Syndrome, parasomnias, sleep walking, talking and others of the umberella related sleep disorders. I have sent a letter to the hospital, two months ago, and they're reponse...they won't see me again, due to lack of funding issues and large amounts of patients waiting.

Doctor's stated i'll be on provigil for life.

kinkyjinks wrote: »

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.

JFKS

Can I make a suggestion that you get yourself refered to The Royal Neurolgical Hospital in Queens Square , London, Where they will test you for Mitrocondrial Diease and CFS, The test are not nice but might give you the answers as to what is wrong. What you should be having is a Open muscle biopsy, This will pick up weather the Mitrocondrial are working. When you get a confirmed diagnois The Team at Queens Square will help you get the needed benefit.

They will also run sleep studys to see what is exactly going on during sleep, If your Gp will not refer you change GP,

Yes I do know what I am talking about as I have Stage 4 Heart Failure caused Mitroconrdrial Myopathy, and with there help get both Mobility and care.

bambammy

Hiya Jen, after many years...god...22yrs I've danced with this issue. I use to live on soft food, soups, yogurts, mushy stuff....because to put anything in my mouth would cause me extreme pain.
Just kept giving me nexium. Not one doctor every suggested wheat/gluten/carb allergies.

I read Sarah Myhill's book, got the mitcho test done, followed her suggested eliminating various toxins, and I have determined that when I eat carbs, bread...I toss and turn badly, come out in spots, and i'm a dead women walking again.

I got a lecture from my mother about paying for the CFS mitcho test. But to me, the laboratories do not come up with different test results when testing, just because you went private.
Mostly purchase vitamins from ebay or Holland and Barrat.

GlasweJen wrote: »

Also why do you avoid dairy/gluten etc? do you have allergies?

The prices you quote for the injections are too high to be on NHS prescription but not high enough to be on private prescription (going by prices in scotland), are these prescribed items or are you buying online?

Most of the supplements could be cut out of your diet if you ate properly and took the injections as prescribed (assuming they are prescribed), people with malabsorption don't need all that stuff you wrote on the last page and even if you did have malabsorption that doesn't stop you from overdosing.

JFKS

Instead of moaning on here and following stupid expensive diets get yourself to London and see the Mitrocondrial team, The Biospy is simple it a 6cm inscion in your thigh and live muscle is harvested and then tested.

What test did you have done because Blood tests do not pick up all the Mitrocondrial problems.

If they find a problem they will prescribe any supplements you may need,

I do hope you dont not have the diease because it is not nice I no longer can do alot of things and like another poster to have a bath, wash my hair is a mammouth task, A day out can put me in bed for 3 or 4 days after.

The Muscle in my body that are affected are Eyes, Kidneys, Knees, Hips, I am awaiting assement for a Heart transplant, I have not slept properly for about 3 years but instead of moaning and following quack diets I sought proper help, and it was not easy.

So get yourself to London....

As for driving I would love to have the energy to open the car door let alone get to the car!