1. Oct, 2013

Idiopathic Hypersomnia Awareness Month Radio Interview 24 Sept 2013

Listen to the interview

Ola:

We’ve heard of Hypertension, Hyperactivity, Hyperventilation, Hyperthyroidism, and even Hyperthermia. But, how many of us can say that we’ve heard of Hypersomnolence?

Hyper-what? You ask.

Exactly.

Hypersomnolence is not something that we’ve heard of often, or perhaps at all. I can admittedly tell you that in all my adult years, I had never come across it – and even when I did, it was largely by chance.

You see, I was going through the health calendar, and there – under the section for September, was Idiopathic Hypersomnolence Awareness Month.

That got my attention big time, because I didn’t even know there was something by that name that existed, let alone a whole month dedicated to raising awareness about it.

So, it was time to turn to “Dr Google” for answers, and answers I got, but only ones that left me with even bigger questions and a lot of confusion.

Time for plan B, which meant getting in contact with a real person who would give me the answers I was looking for.

That real person is joining me and you on Community Connect this afternoon to explain this fancy sounding condition in the simplest way possible.

Her name is Michelle Chadwick, the Director of Hypersomnolence Australia, and she’ll be with us right after the break to bring Hypersomnolence out of the shadows. So tune in if you’re curious to find out more. I know I am.

(SHORT MUSICAL INTERMISSION)

Ola:

On the line now, and joining us on Community Connect this afternoon is Michelle Chadwick, Director of Hypersomnolence Australia, to help educate us about a rarely heard of sleeping disorder called ‘Idiopathic Hypersomnolence’ and so I’d like to greet her and welcome her to the programme. Hello Michelle, and welcome to Community Connect.

Michelle:

Hi, and thank you for having us.

Ola:

Michelle, I must concede until very recently I had not heard of your organization, or Idiopathic Hypersomnolence, but once I did I became very intrigued to find out as much as I could, and to share it with the rest of the community as well.

Idiopathic Hypersomnolence it’s quite a mouthful to say, and sounds like a very fancy medical term for quite a complex condition. Can you please define this term, and give us a little introduction to Idiopathic Hypersomnolence please?

Michelle:

It is a sleep disorder, but it’s actually a neurological sleep disorder, so it’s not breathing related, so it’s not typical to what people usually think of when they think of sleep disorders, so it’s not Sleep Apnea.

It actually is characterized by excessive sleepiness. People with Idiopathic Hypersomnolence can sleep in excess of 12 hours or more in a 24 hour period, and still feel like they’ve had no sleep at all.

They wake up feeling drowsy, which is what’s called Sleep Drunkenness.  They feel like they have woken up somewhat sedated, and they’re trying to regain consciousness from that.

Ola:

So they just don’t seem to get enough sleep?

Michelle:  

Well it does appear that they don’t get enough sleep, it does appear that they suffer from chronic sleep deprivation, but the fact is that people with Idiopathic Hypersomnolence have an almost perfect nocturnal sleep, so they’re night-time sleep is actually considered quite good, but they don’t receive the benefits of that good sleep.

Ola:

Michelle, I stand to be corrected here, but I’m under the strong impression that the reason that I haven’t heard of Idiopathic Hypersomnolence before is because it’s a rare condition. Is it so, or have I just had my head buried in the sand all this time?

Michelle:

Well, not exactly. I think the main problem is, is that regardless of whether it’s rare or not, and there is some contentious issues there with current research and previous research, they do think it’s actually a lot more common than they used to believe. The problem is and the reason that you probably hadn’t heard about it is that it’s not a breathing related sleep disorder, and that seems to be what the focus is of sleep medicine. It is something that can be corrected with sleep machines and lifestyle changes, and things like that.  So, it’s something that can be successfully treated, whereas our condition is quite complex, and not a lot of research has been done about it, and as a result it’s not something that is focused on by our sleep medicine community, unfortunately.

Ola:

Is it known if this sleeping disorder is hard-wired into us at birth or whether it is something that we develop in a later stage in life?

Michelle:

Well it’s something that is usually, the onset is usually in the teenage years, and by the age of about 25 if you have Idiopathic Hypersomnolence, you would pretty much know it by that stage. It’s not something that’s a late onset disorder, and it’s not due to lifestyles – so it’s not something that you can acquire and it’s not something that you can change by lifestyle changes.

Ola:

Right… Michelle, although I had not heard of Idiopathic Hypersomnolence until very recently, as I started to read about it, it became evident to me that whilst it is quite an unusual condition, it does share some common symptoms with other sleeping disorders, and bares a lot of resemblance to symptoms of Narcolepsy. What I would like to know, (as I think most of our listeners want to know is) what sets IHapart from other sleeping disorders? What sort of symptoms could a person with Idiopathic Hypersomnolence experience?

Michelle:

Well, traditionally, the difference between Narcolepsy and Idiopathic Hypersomnolence was that we can sleep endlessly and still feel like we’ve had no sleep at all. We will wake up feeling like we’ve been sedated and we’re trying to regain consciousness from an anesthetic. It is that severe. We also don’t have refreshing naps, so we can nap during the day, hopefully wishing to wake refreshed, but it doesn’t happen.

Traditionally with Narcolepsy, naps are refreshing, so they do actually schedule short naps during the day. Sleep is not usually long, they sleep the normal amount of hours during the night. The other main difference is that their sleep is not normal. They have a disruptive sleep pattern – hence the reason for their excessive daytime sleepiness. But, recent research has shown that there’s quite a bit of overlap between Narcolepsy and Idiopathic Hypersomnolence, so there are numerous people with Narcolepsy that actually do experience some of those symptoms in Idiopathic Hypersomnolence, so there are crossovers, but traditionally those are the differences. We have very long sleep, none of our naps are refreshing, and that is pretty much the opposite for people with Narcolepsy.

Ola:

It is quite a strange condition. Now, how does the condition and its related symptoms interfere with a person’s ability to live a normal and wholesome life?

Michelle:

Well, it basically stunts their growth. As I say, it starts in their teenage years so you don’t actually reach your full potential. And, considering it does seem to be a progressive disorder, it’s something that throughout your life you’re constantly taking knocks, basically. So, you might feel like you know you’re succeeding at something, but the condition just keeps bringing you down. And, you just keep missing out on social activities, advances in your career or work, social life with your family. You miss out on quite a bit, and it’s not just because you’re excessively sleeping, it’s because the time when you’re awake, there’s no quality to it, there’s no quality to the time that you’re awake. And your cognitive ability really does start to diminish as the condition sets in and you get a bit older, so you really need to start re-evaluating your life, and you start realizing that you’re just not participating in life anymore.

Ola:

Yeah… So it’s not just about the time that’s lost from excessive sleep, it’s the fact that even those remaining hours when you are awake you’re not really awake, and therefore you’re not enjoying life. I presume this would interfere with your ability to (as you say) hold down a steady job or socialize with people, I mean maybe even driving and your ability to get around if affected.

Michelle:

Absolutely. And the unfortunate thing is there is research going to be done in Australia, and quite a bit of money has been put aside to look into the dangers in the workplace of sleep deprived people. But, they’re not including our condition. And absolutely we are a danger to ourselves, and to the people around us when driving, working, in everyday life and in the home we have the potential to have all sorts of accidents. And it is difficult because we tend to be misdiagnosed, or not diagnosed at all, so we don’t know that we have this condition. So we get around driving, and operating machinery and looking after children and whatnot, and we don’t know that there is something really wrong with us. So, it really is something that needs to be researched more and addressed because there are people out there that don’t even know that they’re suffering from something that really is real.

Ola:

Indeed, I mean the effects of fatigue have been known for some time, and fatigue is acknowledged quite readily by the medical profession and by the as you know something to be concerned about and people take their precautions as a result, knowing that you know “If I am fatigued, I shouldn’t drive”, or “I shouldn’t operate machinery” or “I shouldn’t be doing ‘such and such’”, but when it comes to Idiopathic Hypersomnolence, even though it’s very much like fatigue in that you’re not functioning at your best , it’s still not recognised, and therefore people are not taking precautions.

Michelle:

Well no, and the problem with the individual is that because they’ve lived with it for so long they don’t realize that their life is as bad as it is. They don’t realize that they’ve learnt coping mechanisms that can fail and often do.

Whereas when it comes to the medical profession, I don’t think they realize the prevalence of it in Australia, that there really is probably more people out there suffering from the condition than they may realize. There are no accurate statistics or figures on how many people are even diagnosed in Australia* let alone who may have the condition.

Ola:

Yeah, I also understand that this condition it’s characterized with heavy sleep or being a heavy sleeper and not being able to wake very easily. People may put that down to just being a heavy sleeper at the end of the day?

Michelle:

That’s a very good question, and that does tend to be what you and your family may start to realize is becoming more and more of a real problem, is that you can’t be left to wake up yourself, and actually do need another person to come and physically wake you. And they can wake you and walk out of the room, and you will fall back into a deep sleep. And that can happen several times before you actually make it out of the bed.

Because it happens usually around your teenage years, that’s just blamed on being a teenager.

Ola:

(Laughs)Yes true.

Michelle:

That’s how teenagers are they like to sleep, they don’t like to get up. But as I say, as you start to get older, yourself and usually your family start to realize that it’s not just being a teenager.

Ola:

Michelle, prior to this discussion we had an interesting phone conversation in which you told me a little about your own experience with Idiopathic Hypersomnolence, and how it was such a challenge just to get a proper diagnosis for your condition. Would you care to share your experience with our listeners?

Michelle:

Well yeah, that’s another good point to bring up. I took over twenty years to be diagnosed.

Ola:

Wow

Michelle:

And it wasn’t that I wasn’t trying, I mean I’m a proactive person and I’m not somebody that takes no for an answer easily. I was pushed and shoved all over the place. And for twenty years there wasn’t a single GP (ordinary doctor) who even thought of sending me for a sleep study. So I basically had a little bit of a look on the internet myself, and had no idea about Idiopathic Hypersomnolence or anything like that. What I found on the internet was there was such a thing as sleep studies, I didn’t even know that, and I asked my GP you know “Could that be something that we need to look at next?” because it is a diagnosis of exclusion. You do need to exclude everything else that could possibly be causing you to be this exhausted and sleepy and tired, and we had done that – and I had done that numerous times over the years but we just never got to sleep studies.

Ola:

I guess people would put it down to (as you say) maybe being a teenager or thyroid problems or hormone problems…

Michelle:

Yep

Ola:

…of some sort, or just to all sorts of things. When something is not known or not as “popular” with the community, or with Gp’s even, as is the case with Idiopathic Hypersomnolence, then yes there is this expectancy that they’re going to be pushing you and shoving you in every which direction to try and diagnose you with something that is known to them.

Michelle:

Yeah well that’s true. I mean umm, I went through every stage in my life where it provided an excuse for everyone, including myself, I would excuse my condition. I would excuse what was happening to me to “Oh I'm just tired and that’s why I fell asleep in the middle of class,” or “I had a late night,” or “Maybe I’m not getting good sleep,” I did consider that. And as I got older, it was you know “I’m going out too much, I’m socializing,” right up to “Oh, I’m now pregnant and it’s expected of pregnant women to be tired”

Ola:

Yes

Michelle:

Or I have young children, so it was expected of me to be tired, because I’ve got young children… but this is not tired, this is you are sleepy constantly, you don’t ever feel fully awake and there is a big difference.

Ola:

That is very very difficult, when you comes to that point when you eventually run out of excuses, and you’re left with no other explanation as to why you’re feeling like that and still the doctors are telling you “Oh, there’s nothing wrong with you,” or maybe you know “There is something wrong with you but we just don’t know what it is”.

Michelle:

Well most doctors actually say that ‘There’s nothing wrong with you, to be honest’ and they’re honest with you because they don’t know about Idiopathic Hypersomnolence, so they truly believe that they’ve ticked every box that they’ve gone over everything, and that there isn’t anything wrong with you. And that’s what concerns me personally and our Organization, that there are people that go to doctors and they feel (because their doctor has told them that they have) that they’ve exhausted all avenues and there is nothing wrong with them.

Ola:

Yes, now in medicine, it has often been said that knowing the cause behind a condition is reaching the halfway line to finding a cure for it, or at least a treatment. Michelle, how close to that halfway line are we in terms of establishing cause, or finding either a cure or treatment for IH?

Michelle:

I’m sure that IH is not the only disease or disorder where a diagnosis doesn’t fill you with a lot of happiness (laughs) or joy.

Ola:

(Laughs) Yep

Michelle:

I do understand that in a lot of cases it is a relief to know that there really is something wrong with you and it’s not all in your head and it’s real, but that is short-lived because you realize that it is a very isolating condition.

Ola:

Yes

Michelle:

There isn't a lot of research being done, and the treatment that is offered to people in Australia or mostly throughout the world it doesn’t differ greatly, but particularly in Australia the medication that is offered to us is the medication that is approved for Narcolepsy, there isn’t any medication approved for our condition.

And the medication for Narcolepsy is not overly effective for Idiopathic Hypersomnolence. So, diagnosis is definitely a relief, but it doesn’t provide a lot in terms of treatment, there’s no cure in sight.

There is some promising research being done at Emory University in the States, which suggest that GABA may be responsible for at least some people with Idiopathic Hypersomnolence, and some people with Narcolepsy (without cataplexy), those are the people that would have crossover symptoms, umm they would probably share a disorder that Emory have identified, but really that’s not the answer for everybody and the medications that they are discovering work with the disorder is not readily available to everyone to even try.

Ola:

So, a label is pretty much all that you have in terms of relief at the moment. You’ve got a label on the condition as to what you have, but as far as you know getting treatment or finding a solution, or finding a way to manage that condition effectively is out of your reach still.

Michelle:

Yes it is. That’s the short of it. We have a diagnosis, we have a label, but there isn't any treatments approved in Australia, there isn’t any research being done in Australia, there isn’t any awareness being done in Australia except for what our organization has started to do this year.

So, apart from the label, nobody knows about it. So, there is still some doubt definitely, even if people who come home from their specialist with a diagnosis will have family who still doubt them.

Ola:

Yes indeed. I could imagine, because if they don’t understand it and they’ve never heard of it before, and even the doctors are telling you “well, there is something wrong with you, but we don’t know exactly what?” and so, it could be met with a bit of scepticism, but it is real for those who are affected by it, very very real.

Now Michelle as you just mentioned, this September has been significant for Hypersomnolence Australia in that it has been the first time a Hypersomnolence week has been held or marked. Why did your organization feel the need to dedicate an awareness month to this cause, and in what ways would raising awareness make a difference to those who are living with IH?

Michelle:

That’s a really good question as well, because it’s a pretty bold move for our organization to declare an Idiopathic Hypersomnolence Awareness month, being such a rare disease, and rather small community, and we are a very young, small organization ourselves. We weren’t quite sure what we were going to be able to achieve. But we knew that if we were able to raise awareness within our own communities, so that we felt safe to discuss our condition with our employers and our families and friends, which many of us don’t, we keep it to ourselves and keep it secret.

Ola:

Yeah

Michelle:

And we just felt that if we were able to raise awareness within our own communities and hopefully get a little bit of news out there on Facebook and whatnot, that would be a start.

It’s been amazing the reactions that we have received and we’ve been overwhelmed by the amount of people who’ve contacted us through our website and Facebook page, and yourself offering to do this interview. It’s been fantastic, and we really do appreciate the support that we’ve received, way beyond our expectations.

Ola:

Yes, I guess there are a lot of people out there who can relate to the symptoms that you outline, and to you know, the experiences of the people who have shared their stories on the internet or on Facebook. And who have suddenly said “Oh, there’s someone out there who is exactly like me! And I’m not abnormal and I’m not imagining stuff” There is a real condition, and it’s got poor recognition to it.

Michelle:

Yes and like I said, there are actually people diagnosed that keep it secret, that there are very few people in their life that know that they are suffering from the condition, because it’s not recognized, there’s no discrimination laws that particularly cover us, so people don’t want their employers to know and they don’t want their families and friends to know, because they don’t feel that it’s going to be accepted and they will be judged. So the awareness has been to people that didn’t know they had a condition, but it’s also spread throughout our own community, and that has been a good thing because it does need to be spoken about, and our employers do need to know that it’s a real disorder, just like anybody else they can’t discriminate against us, although they do.

Ola:

It’s not something that you can help, after all, and it is beyond your control, and employers and families need to be aware of that.

Michelle:

Yeah

Ola:

Now on the topic of your organization and its role during Hypersomnolence Awareness Month, what can you tell us about Hypersomnolence Australia’s current efforts and future objectives?

Michelle:

Well what we hope to achieve primarily right now is to get an information pamphlet together, explaining everything that there is to know, that you could possibly know about Idiopathic Hypersomnolence. Where you can get support, where you can get further information from, everything that you’d usually find in a medical-type pamphlet in a doctor’s surgery, because there isn’t anything like that that exists at the moment. So you go and you get your diagnosis, the specialist will say a few things about it, but you’re leave feeling fairly confused and isolated, and you don’t know where to go next, and you don’t know a lot about it, the doctor hasn’t explained much, so we want to provide sleep clinics and appropriate doctor’s surgery’s with a pamphlet that they can hand their patients that will provide them with the information that they need to take the next step in their life.

So, we’re focusing on raising awareness through a pamphlet like that, within surgery’s and sleep clinics, and what our long-term goal is to get research happening in Australia for non-breathing sleep disorders.

There is a lot of research and an awful a lot of money spent in Australia on Sleep Apnea, Insomnia and other sleep disorders, but to my knowledge there has never been any research, any significant research at all done on Narcolepsy or Idiopathic Hypersomnolence and we would like to change that.

Ola:

You know what? I think that’s been reflected, because as I started to do my research on this topic I really did struggle to find any length of detailed information about Idiopathic Hypersomnolence, except for when I turned to your website, and this is when I really began to understand, and this is where I began to really see that yes this may be the only source of information that I have to rely upon because everywhere else there were little bits and pieces about it, but nothing that really explained it to me. And I guess the idea of having a pamphlet produced for people to have access to, is a great idea.

Michelle:

Yeah, well it’s definitely needed. When you go into a sleep clinic there will be pamphlets on Obstructive Sleep Apnea, Restless Leg Syndrome and other sleep disorders, but you won’t even find anything on Narcolepsy. So, as I say, it is a very confusing time when you are diagnosed, because you don’t come away with an awful lot of information, and although you can find things on the internet that relate to Idiopathic Hypersomnolence, it’s not Australian, and it’s not particularly focused on how the condition is handled and treated in Australia, and that’s what people need to know.

Ola:

That’s right indeed, and finally where can people go to find out more about IH or to discuss their concerns about symptoms they feel may be related to Idiopathic Hypersomnolence?

Michelle:

Well it may be helpful to check our website out www.hypersomnolenceaustralia.com we’re also on Facebook and that’s a Facebook Page, Hypersomnolence Australia. We also have a support group we do actually find people that join our support group (and our support group is on Facebook) it’s called Idiopathic Hypersomnia Australia, and we have people that join our support group because they feel they may have Idiopathic Hypersomnolence** sometimes they find out that they actually have Narcolepsy, but they just have symptoms that are similar to our condition, so they stay with our support group because they relate more to us.

Ola:

Yes

Michelle:

We also have people that join our group and then realize that their condition is actually something completely different, but they start there because they do feel that they relate to the condition, and our support group and our organization is welcome to anyone that is concerned about their condition. We aren’t experts, we can’t tell people what is wrong with them, but certainly once you’ve spoken to people with the condition you can be a good judge of whether you believe you need to investigate the sleep condition further, and anyone concerned about their sleep condition or the conditions of their sleep should speak to their GP and ask for a sleep study.

Ola:

Indeed, now Michelle this has really been a very interesting learning curve for me today. I wish to thank you for giving us a glimpse into this perplexing condition, and for sharing your experience with us on ‘Community Connect’.

Michelle:

Well thank you for having us. As I say, community awareness is imperative, it needs to happen for appropriate treatments to be available for people with this condition, so you’ve done a great service for our organization, and for the patients that suffer with Idiopathic Hypersomnolence so we can’t thank you enough.

Ola:

Thank you very much, it’s been my pleasure.

Michelle:

And my pleasure too, thank you.


 

If you would like to support Hypersomnolence Austalia and help those with Idiopathic Hypersomnia please click here!

*Hypersomnolence Australia now has a patient registry.

**The Idiopathic Hypersomnia Australia Support Group is now only available to those who already have a diagnosis of Idiopathic Hypersomnia/Hypersomnolence. If you are experiencing any symptoms we urge you to get medical investigation.

Acknowledgement and appreciation:

Ola Nafeh and Community Connect 92.1FM for this opportunity and further use of this broadcast.

Mr S. Heath for volunteering recording and transcription.