social spark Aisling Beatha: So, what does sleep apnoea mean to me?

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Tuesday, January 20, 2009

So, what does sleep apnoea mean to me?

If you saw this as an empty post earlier, I apologise, my hand slipped and I posted it just as I had typed the title!

So, you've had some fairly good explanations of the technicality behind what sleep apnoea is, before now.
What I want to share with you is how it affects me personally, on this, the week I will finally receive my CPAP machine.

I have always been a snorer. It runs in the family. Dad snores, I snores, my sons snore.

I have always had problem tonsils, in fact if I have the story right the doctors got to the point when I was a kid that they told mom and dad if i got tonsillitis again they would take my tonsils out, but then I didn't get it again for a while. I have had tonsillitis a few times as an adult and to be honest don't even bother going to the GP, because it is never the horrendous cases I used to get as a kid and there's nothing they can do for it anyway.

I have spent much of my life overweight. I was a podgy child, I lost weight in my teens and then put it all back on again as a young mother. I am now clinically obese and have been for years. I have tried to lose weight at various times with varying amounts of success, but always end up back where I started, eventually.

THAT is not the future I want!

Why am I telling you this? Because these 3 issues are all factors in Sleep Apnoea.
The biggest factor of all being the weight, because that will always make this condition worse.
So, why don't I just lose the weight, and keep it off and solve the problem that way?
I have tried, but as my sleep apnoea symptoms have worsened, it has become harder and harder to find the energy to cook proper meals and harder and harder to find the energy to even do housework let alone add in exercise, which I know is essential for me to lose the amounts I need to lose.
So in the end I have got stuck in a vicious cycle which only gets worse and worse.

How long have I been suffering what I consider to be sleep apnoea symptoms?
I would say that seriously I must have had it for at least 4 or 5 years now, this lack of energy, this daytime tiredness, but I did not seek help at first, because I "Knew" that the doctor would just tell me to lose weight and go home. At that point in time I had not thought it was sleep apnoea, and so carried on as best as I could thinking if only I could lose the weight it would be fine.
After a couple of years of that my symptoms got worse, around the time when my son went to 6th form. I was driving 12 miles each way a number of times a week, and at least 3 or 4 miles each way the rest of the week. Not a lot, not a problem, well, not if you can stay awake. And his school pick ups would often come at what was my worst time of the day for tiredness. It was hard. I kept cola, caffeine tablets, and an anti viral nasal spray in the car to keep me awake. If you think the nasal spray is an odd thing to have in a list of things to keep you awake, you've obviously never used one of those things, WOW does it make sure you're awake, for a while at least.
Once I actually fell asleep driving, thankfully I hit the kerb and that woke me up.

That frightened me enough to finally go see the doctor, although I didn't tell him about the falling asleep driving, I did stress how tired I was and how little energy I had and so on. I was by now convinced I had sleep apnoea.
I did not see my usual GP. Our surgery is a large surgery, and is also a training practice. Every year we have 2 doctors who are on the final year of their GP training. I saw one of those doctors. By now I had begun to do my own research, and I was pretty convinced I had sleep apnoea, everything seemed to fit, so I went and told her so. She refused to refer me for a sleep study, because my husband could not say he had heard me stop breathing in the night while I was snoring. I was incredulous, I mean, just because he hasn't witnessed it means it hasn't happened?
So they did all the usual blood tests for tiredness and lack of energy, iron levels, diabetes, thyroid and EVERYTHING came back normal!

I should have pursued this further back then, but I didn't, she had basically left me with the distinct impression that my original assumption had been correct and that all they were going to do was assume it was because of my weight and therefore my own stupid fault and just tell me to go away and lose it. Oh yes, they even offered me exercise on prescription, which is a fantastic scheme if you get free prescriptions, if not it actually ends up costing more than a gym membership and I couldn't afford one of those!

Anyway, add another 2 years to the story, and earlier this year my symptoms racked up another notch. I can't pinpoint when exactly but I gradually began to be aware that I was FREQUENTLY falling asleep
  • At the computer desk
  • seated on the sofa
  • as a passenger in the car
  • even during a sermon in church
  • finally even during lively worship in church
  • ALWAYS if I lay on the sofa
  • and so on
At the same time I became more and more aware of my night wakings. I would wake, sit bolt upright on the side of the bed and fall back to sleep right there, only waking again when muscle tone dropped and I fell over. I was falling asleep on the toilet in the middle of the night and all sorts. It was quite frightening.
I was starting to get neck cricks form the falling asleep sat up, and I was often biting my tongue when alseep in that position. I researched sleep apnoea again and I KNEW that this was what I had, what I didn't know was how to convince the GP.

BUT STILL I was tired, falling asleep etc. I researched some more and found a chart where you fill in how often you are likely to fall asleep in a number of different situations. If your result was 11 or more, you should consult your GP with regards sleep apnoea being a possibility. Mine came out at 17 or 18, which the chart considers even a risk of narcolepsy! So I took that with me on yet another visit to the GP. This time was very interesting, I was armed with my chart, I was armed with the knowledge that Andrew would now happily say he had heard me stop breathing in the night, because he had!
Now, I mentioned that our surgery is a training surgery, they are expanding their training services and this time there was a very young newly qualified doctor, considering a move to GP work, sitting in on the appointment. It was clear my GP was not happy about me researching myself, and he had this guy run through all the other possible reasons for tiredness and lack of energy, and insisted on referring me for the blood tests. Anyway I finally got him to refer me for an appointment with the sleep clinic.

I had to wait over 12 weeks for my appointment at the hospital. 3 months of symptoms getting worse again, meanwhile we started with the whole round of blood tests again, la de da! One did not come back normal and concerned them because ti was away from normal the opposite way to the way it normally is if there's a problem, I researched it online and discovered this was a common result in obese people and would return to normal when weight reduced. And that it wasn't a health threat in itself just a warning.

So finally, back in November I was due to see my sleep specialist, Mr Moudgil at the Princess Royal Hospital in Telford, Shropshire. I actually got to see him a few weeks early because they added in an extra clinic on a weekend. the only thing about weekend clinics is that all the other departments, like x-ray etc, for doing tests are closed, so I had to go back and do those on the Monday.
But in talking with me Mr Moudgil was quite happy that he was sure I was right and I did have Sleep Apnoea. He did not confirm my fears about being lectured about my weight, in fact he confirmed what I had already worked out for myself about the vicious circle and said "Let's get this treated first, then we can get the weight off." WOW, what a revelation, a doctor who took me seriously, a doctor who was willing to do what I needed to get better, WOW.

He suggested it might be an idea for me to see and ENT (Ear, Nose and Throat surgeon) as after one look at my tonsils his first comment was how big they were. He figured that overlarge tonsils just add to all the flesh in the throat that causes the airway to close down and removing them MIGHT solve the problem on it's own.

Some consultants at this point would have made you go research that alternative first, then come back to them, but he didn't, he said eh was quite happy to continue down both tracks of treatment at the same time, then He referred me for a sleep study, which these days involves bringing a machine home and strapping yourself up to it that night, then taking it back the following day. He said that if that came back positive I would probably see one of the technicians to pick up my machine before I saw him again.

Sure enough, the appointment to pick up my machine, came in the post weeks before my letter from him confirming that indeed my sleep study confirmed I have sleep apnoea.

SO, I pick up my machine on friday 23rd January, this week, which is also my birthday!
Then on 11th February I see the ENT to discuss my possible tonsillectomy. However in my letter from Mr Moudgil he did say that having viewed my results he now thought this would HELP rather than CURE, but heck, I'll take all the help I can get.

2 comments:

  1. Hi Zoe!
    I enjoyed visiting your blog, so glad to hear you're getting the treatment you need for your sleep apnea. My father-in-law suffers from it also, but refuses to use the machine at night. I hope your birthday is wonderful!
    Love, Velvia

    ReplyDelete
  2. ((Zoe)) You've written a very complete description. Doing that helped me shortly after starting dialysis. I am praying that everything will go well and that you will get some good sleep!

    ReplyDelete
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