Diving with narcolepsy

5 years 1 month ago #26254 by mrpotato
mrpotato created the topic: Diving with narcolepsy
Hi All,

Recently I was diagnosed with narcolepsy and has thrown my diving plans out the window. I've been diving on and off for around 8 years and hoping someone else has experience with my condition.

I'm too worried to go diving without medication in case I do fall asleep and I'm not comfortable to dive on amphetamines or put my dive buddy in either situation.

Are there any other narcoleptic divers here or do I need to look at hanging up the fins?

Cheers,
Mr P

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5 years 1 month ago #295058 by regrungy
regrungy replied the topic: Diving with narcolepsy
Standard disclaimer

"I'm not a medical professional but..."

I reckon its a pretty safe bet you would be considered a high risk for yourself and your buddies. Without knowing how it affects you if you have been prescribed amphetamines then its probably serious enough to affect your lifestyle in general. At the very least you would have to limit your diving to no more than 20M as narcosis would possibly make things worse. Diving aside there is the risk of not being able to attend to an emergency or monitor divers if you are driving or minding a boat. I feel really sorry for you. Its a condition thats often joked about but I bet its not funny for those afflicted. The only thing I can offer is see how the treatment goes and make an informed decision based on your state of being.

If you do discontinue diving, I'm after some new regs !!

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5 years 1 month ago #295060 by mrpotato
mrpotato replied the topic: Diving with narcolepsy
Thanks Regrungy, I have pretty much decided that I would need to give it up as I really don't like the idea of having to put buddies into a situation.

I've been dealing with the condition for years without knowing what it was so yes there will be lifestyle changes but at least I know what the problem is now. I was hoping to find someone else with the same condition who dives or used to dive but as the condition isn't common that might be hard.

Looks like I will be selling some gear so happy to let you know what I have if you are interested.

Cheers,
Mr P

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5 years 1 month ago #295062 by Andy Del
Andy Del replied the topic: Diving with narcolepsy
You need to go talk to a hyperbaric or dive specialist who will be able to consider your condition, drugs prescribed, side effects, etc. etc. with regard to diving.

There are enough divers out there who develop type 2 diabetes and keep diving: they manage their condition successfully. It may be possible for you to do the same.

(I wouldn't even consider mentioning it to the specialist who is dealing with the narcolepsy, as they may not be in the know with diving. (My GP is still certain the pressure of diving will squish me flat as a pancake. Why I'm not sure. Maybe he wants a scholarship for his kids? [:o)] ) )

Good luck with this!

cheers

Andy

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5 years 1 month ago #295071 by mrpotato
mrpotato replied the topic: Diving with narcolepsy
Thanks Andy, I didn't even think of following that path so thanks for the tip. As you say I doubt very much my sleep specialist knows much about how this would affect diving.

Cheers,
Jason

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5 years 1 month ago #295073 by spiro
spiro replied the topic: Diving with narcolepsy
On a light hearted note.. You would be the ideal buddy for a group of rescue divers in training...

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5 years 1 month ago #295076 by Stan Bugg
Stan Bugg replied the topic: Diving with narcolepsy
G,day Jason,
As with Regrundy; "I'm not a doctor, but..."

Sadly some medical conditions carry with them the recommendation that the sufferer does not dive, and a condition that renders you unconscious with no warning would be a prime candidate.

I agree with Andy; seek expert medical opinion from a doctor qualified in underwater medicine.

I found some info on the SCUBAdoc website:
They say that someone with at least a year free of episodes might be considered OK to dive.
Additionally, they highlight side effects of medication that may not be compatible with diving.
They also point out that ALL who are involved in your diving..buddies, instructors, DMs, boat skippers etc..need to be informed of your condition. ( a mixed blessing, because it may give them the excuse they need to bar you!!)

I am sure one of the diving doctors who frequent this site will provide a more informed opinion in time.

Keep us informed.
Regards,
Stan

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5 years 1 month ago #295175 by No regrets
No regrets replied the topic: Diving with narcolepsy
Hi Jason,

As with previous posts, there is no substitute for seeing a qualified medical expert in the field however here is a site with some worthwhile perspective:

www.scuba-doc.com/narcodiv.htm

Bruce

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5 years 4 weeks ago #295208 by mrpotato
mrpotato replied the topic: Diving with narcolepsy
Hi Stan & Bruce,

Thanks for sending through the link to that scuba-doc site, this was the kind of information I was looking for. Reading about the possible risks of oxygen toxicity on my medication doesn't exactly have me wanting to go diving and not something I am willing to trial underwater.

I've spoken to my specialist and come to the conclusion that I will give up the diving for now and maybe at a later stage in life if things change I might look at it again. I've had some great experiences and trips diving so I will miss it but it does mean I will be able to go surfing more often.

Thanks for everyones help and it is much appreciated!

Cheers,
J

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5 years 3 weeks ago #295284 by Andy
Andy replied the topic: Diving with narcolepsy
I knew someone who was diagnosed with narcolepsy and dived without issue with the condition. She was put on amphetamines (and dived using them) as her doctor was concerned she might dose off whilst driving. Whilst constantly tired I have never seen her fall asleep in the middle of something though she might dose off on the couch occasionally when it had been a long day.

The father-in-law of a chap who worked for me has been in several car crashes because of narcolepsy and apparently would fall asleep mid sentence. I don't know if he was taking any medication.

I would suggest these two cases represent somewhat the extremes of the condition.

Ultimately I guess you will have to consider the severity of your own condition and the risk of many activities to yourself and others. With regard diving there is a big difference between pottering around under a jetty in 8m to boat diving a current affected wreck or a reef in 40m. Who you dive with, how close they stay and their ability to assist you is something else you might have to consider.

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5 years 3 weeks ago #295322 by wiggsy
wiggsy replied the topic: Diving with narcolepsy
Andy's pretty much spot on - it would relate to the frequency and the severity of the condition. Certainly you should consult a diving doctor - maybe e-mail Sportdiving magazine who run an excellent column on diving medical matters. John Lippmann may be able to help. Keep in mind that people with quite serious challenges (such as blindness, or wheelchair bound) manage to dive. I imagine that some dive operations may be able to supply a one-on-one specialist guide who would be paid a fee to watch you closely (and I mean closely). But try to keep positive too, and consider whether snorkelling might be an option, again depending on the severity of your symptoms. If you worked hard at freediving and trained up a bit, you would be amazed at what you can see freediving. I recently broke an arm and was reduced to snorkel only while it healed on a trip to The Philippines. I had a brilliant time - I couldn't believe how close I got to Butterflyfish and Moon Wrasse in the shallows. Snorkelling with a buddy could be a good compromise, but again, you would need to seek qualified opinion. I just would think it unlikely that you could unfocus and drift off whilst on an actual freedive. If you are permitted to swim, then snorkelling in confined calm waters could be an option. Good luck with it all.

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5 years 3 weeks ago #295343 by mrpotato
mrpotato replied the topic: Diving with narcolepsy
Hi Andy & Wiggsy,

Thank you for the feedback and very interesting comments on friends with N. Thankfully for me I am very much like your friend who is constantly tired and never actually fallen asleep unless I jump on the couch too. Problem for me is that as this is an early diagnosis I really don't know if my symptoms will get worse over time or not.

Like Wiggsy said I have always loved snorkelling and I will take this option for the next couple of years at least and then maybe reassess where I am.

Scary part for me is before I was diagnosed I used to take Travacalm for boat dives (I suffer severe sea sickness) and this made me come very close to sleeping on the boat ride out to the dive every time so I feel very fortunate nothing serious ever came of it.

I'm just getting back to driving a car now on medication and based on my experience I really have no desire to go 30 metres underwater at the moment :)

Lucky for me I have really gotten into my surfing lately and diving became a second option but I will miss it.

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5 years 3 weeks ago #295346 by Steve
Steve replied the topic: Diving with narcolepsy
Agree with the Diving Doc recommendations. Learn more about and discuss full face masks (FFM) with them.

If you love diving and get a good answer regarding the FFM and how it would work for you and your situation, then I'd dive with you. For what that is worth :)

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5 years 3 weeks ago #295347 by mrpotato
mrpotato replied the topic: Diving with narcolepsy
Thanks Steve, it's good to know other divers are keen to help out and willing to put themselves in that situation.

I'll see how things are in a year and if all going well I might just take you up on that offer..even if it is just to take a visit to Perth :)

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