Biguglygremlin

Hi kitty

Thank you so much for your post.

How did you manage to find this thread?

I had more or less given up finding any meaningful responses from people with RBD.

I am sorry that you have to deal with these things at such an early age.

It's interesting that you too have linked the head injury to childhood 'nocturnal epilepsy' and RBD.

The only theory I can offer is that we are all unique and perhaps the disposition towards childhood nocturnal disturbances is genetic but most children grow out of them.

I think it takes a particular type of trigger or injury to cause long term damage that leads to RBD as an adult.

It also seems (hopefully) that if the damage has a physical cause (like head injury) then it is not the same thing as the disease process which starts at the base of the brain and eventually causes Parkinson's Disease.

I also had a head injury as a young child followed by violent nocturnal episodes.

I managed to stop the episodes for many years although something like Periodic Limb Movement Disorder continued through the decades until I was in my 50s and I started launching myself out of bed. The Longest Sentence

I am certainly not qualified to offer any advice on your circumstances kitty other than that it is virtually impossible to die by choking yourself but if your actions are violent enough you need a safe environment to sleep in without dangerous objects nearby.

A partner who enjoys rough and tumble in the early hours would be a definite advantage too. :)

Have you consulted any specialists or tried any medications?

If so I'd love to hear what they advised or if they worked.

My sleep study (5 years ago) was a home study with 439 mins in bed but I slept for less than 6 hours with an AHI of 50+

HI MondayZ

I have no medical training so this is just general uninformed advice.

Most chronic illnesses lead to similar symptoms and I would be surprised if sleep studies failed to find some level of APNEA but I doubt that there is a direct connection.

I would suggest that your circumstances are reminiscent of many chronic illnesses triggered by various viruses.

Sometimes it helps to recall all events, places and circumstances in the weeks or even months prior to first being aware of your current symptoms.

Jetstar have been polite and responsive and they have decided to refund the $60

I don't think this is a general policy and it won't change the problems CPAP users will face in the future but I certainly appreciate it right now.

I would never let my CPAP out of my hands because, as you imply bonjour, there are too many risks and no effective safeguards especially if you are arriving at a strange place late at night.

Just to compound the situation this particular machine belongs to the Launceston General Hospital and their contract forbids putting the machine through Check-in baggage.

They clearly understand that a machine, which cost them thousands of dollars and is considered to be a vital life support system, would be at risk if it was checked-in without all of it's original packaging for transport.

Our laptops and other electrical devices would be safer in general luggage than a CPAP.

Devices are, after all, designed for frequent travel where a CPAP is not.

Thanks Sierra,

I don't like wading into trouble any deeper than I need to but it's been a bad few weeks for me and I'm penniless as per usual so this was just the icing on the cake.

I'll give Jetstar a reasonable opportunity to respond before I take it any further.

Yesterday Jetstar Airlines charged me $60 to take my Resmed CPAP onboard their plane.

Many years ago I was told by my Respiratory Specialist that CPAP machines were classified as medical equipment and were allowed onboard aircraft without charge and numerous doctors and airline staff have told me the same thing since.

I have carried my CPAP onto about 20 Jetstar flights in the past 5 years without any issue or challenge.

I purchased this ticket unaware of any change in policy hence unaware of the need to buy an additional luggage allowance in advance for my CPAP.

I am a Jetstar Club member and I have authorised Jetstar notices via email yet I recieved no notification or warning of this change in policy.

I have since spent ages going round in circles within their website reading rules and policies etc and eventually did find a confusing reference to CPAP with a link to Check-In baggage rules but I certainly didn't find any warning of these changes and the impact on regular customers.

So suddenly, after 20 flights, the Jetstar staff members insisted on weighing my CPAP and proceeded to charge me $60 for the machine.

Apparently I had two choices. Check it into baggage, which I simply cannot do, or carry it onboard which was going to cost me $60.

Because of their extreme baggage charges once you reach the airport this is, for their previous CPAP customers, a form of entrapment and robbery by Jetstar. Without adequate warning it is unethical and unconscionable conduct on their part.

When I objected I was told by both attendants that "everybody has a CPAP now" and another staff member was most insistent that "1 in 3 or 4 passengers have CPAP machines" He even explained that I was being unreasonable in my objections because he had seen some couples with a CPAP each! (with righteous vindication on his part)

These justifications were, to me, gross exaggerations and displayed either ignorance or deception being used to overcome guilt or discomfort with the policies they were being required to enforce.

You all know how I feel about my machine. It is an abominable curse and detestable to the extreme. If I could possibly survive without it, no matter the discomfort or cost I would have given it back to the hospital a long time ago. CPAP Endurance

The implication that my machine is some kind of trendy fashion accessory was so ludicrous that I was dumbstruck!

Anyway my objection wasn't about their policy or their charges but their failure to provide sufficient warning or notification.

I lodged a complaint with Jetstar and am awaiting a response. (They have kindly agreed to refund the excess carry-on fee.)

So be warned that Jetstar now weigh and charge for CPAP machines if you are not willing to check them into normal baggage.

Yes it takes months here too.

When you referred to your doctor I mistakenly thought that maybe a GP could prescribe a machine in which case it would be a simple matter to visit a different one.

I guess the parameters for who can prescribe are set by whoever controls the money for the machine.

Hi jkeith

Are you entitled to a second opinion?

If so request a copy of relevant records and go consult someone else.

If the same situation recurs there might be a valid reason.

If it's an issue of economics offer to pay the difference.

My mask seems to have missed the boat. (or list) :(

Philips Nuance Gel Pillow Mask