Sleep Apnoea Forum Bringing Help + Support to the Patient

I am new to this forum so not sure if this is the right place to post this so please delete if not appropriate. I am not looking for medical advice but just thought it would be good to get some feedback from people who have already been diagnosed to see if you had any similar symptoms prior to diagnosis.

This has been a long journey for me and I think I may have sleep apnea and I am currently waiting to do the hope2sleep test. I am also terrified that it is not.......

I have been struggling since a teenager really and my main symptoms are extreme fatigue, lack of concentration and memory problems which has been steadily getting worse over the last few years.

As a child, I had a lot of problems breathing and was under an ENT specialist who told me that my tonsils were too big that I would grow out of it. I was a heavy breather as a child but I did grow out of this.

Since I was a child, despite being very slim build I was a very loud snorer which has continued since. People have found it difficult to sleep in the same room as me. My partner has just told me that I occasionally grunt in my sleep but he said it doesn't happen very often. 

When I nap, I often wake up with my heart racing and very disorientated and groggy. When I sleep at night, I could easily sleep 10 hours and still wake up tired although I don’t have any problems actually waking up in the morning.

Over the years, I have also had bouts of Low B12 and Anemia but the GP has always said it was borderline and unlikely to make me this tired.

I have been for almost every test possible and they have ruled out thyroid, immune system issues, hormonal issues, diabetes, ADHD, depression and various other things. Although the while thing is getting me down and I am worried I might be starting to develop depression. 

I have currently been diagnosed with dyspraxia and I am seeing a geneticist for hypermobility. These things don’t really account for the pattern of my symptoms however

Steadily over the years I have also been having poor circulation and more and more problems breathing during exercise which leaves me exhausted. My skin and hair condition are also getting progressively worse. I have good days though and wake up refreshed but it doesn’t occur very often. During these days, most of my symptoms go away.

I also had a stimulatory side effect from a medication I was taking and I never felt so good in my whole life.

This test for sleep apnea is a bit of a last resort for me. I am just wondering why none of the specialists would have suggested this before? I don’t want to ask for a sleep test until I have done the hope2sleep test as they have referred me to so many other people already so might think I am just making it up.

I am in my late 20s with a slim build and low to normal blood pressure so although I know its possible to have sleep apnea, is it possible to have all my symptoms without being overweight and having high blood pressure?

Thanks for reading. 

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Hi, my heart goes out to you, I don't think it matters what your build is, although I'm on the heavy side, and can relate to a childhood of heavy breathing/snoring (for the record I was VERY skinny until puberty but still snored). Take the sleep test and if it SA get it diagnosed,

"I also had a stimulatory side effect from a medication I was taking and I never felt so good in my whole life".

I wonder what that medicine was and why it made you feel so good?

Take the test from Hope2sleep, but remember that if it is a home study it may not be 100% acurate, but a very good guide.  Once you get an answer go and get referred to a Sleep Centre for a Nocturnal polysomnography, this is the best test and it involves you being in hospital/Sleep Clinic and wired up to a computer and an APAP for a night, sometimes two.  However, it is the best test there is and it might even pick up other odd sleep patterns.  I used to be thin when I was at school and snored like a power saw on heat lol.  I did this most of my life until I met my partner, this is when she noticed I stopped breathing.  Then she read about it in a magazine and we went to the doctor who promptly said "No one has ever died of Sleep Apnoea", this made my partner hit the roof.  She was so angry that he agreed to send me to ENT where it just happened that the consultant there was attached to the Chest Clinic and was in charge of Sleep Apnoea studies there at the time, so it was a lucky break.  I did tests in Aberdeen, first time the nurse managed to delete the data, so I had to go back in again the next night to do it all over again!  However, the second night I had a room all to myself (the first night I was on a main ward with oldies coughing and moaning all night) so I got a better sleep and as the nurse said a scary result.  There was a male nurse there called Spike because of his hair, he was very camp, but he looked after me very well and was an excellent nurse.

I was then sent to Edinburgh eventually and after a night there came home with a machine and all the gear.

Took a while to get used to it, but I made up my mind that it had to work for me as there was no more options open to me by then.  I was so tired during the day by this time that I could only drive safely 30 miles before I had to stop and take a rest.  This had an impact on work, but I muddled through it.

I know what you are going through and when I was at school the teacher would say I was always a bit slower then everyone else and sometimes they thought I was asleep.  I just got fed up listening to then prattling on and I needed more to keep my interest lol.

Good old days, you must be kidding!!!

Stick at it and do the test, then go for it.  Straight to the doctor, though it can be a long wait and might be worth getting a machine of your own if it is going to be a long wait.  Buy a second hand APAP if you have to.

Thank you both for your comments. I have just done the sleep test last night and a bit scared of the results now! I have this feeling that it will come back fine as everything else has but regardless think I will ask the doctor for a sleep study anyway as I guess it could be other things.

Whatever happens DON'T worry about it, yes there is some disruption if you have to use a machine but believe me and I'm sure sleep2snore will agree, the disruption is far outweighed by the feeling of relief you'll get from a good nights sleep and the boost in confidence you'll get.
"No one has ever died of Sleep Apnoea" What a STUPID statement and from a doctor as well, i'm glas
RK176 said:

Thank you both for your comments. I have just done the sleep test last night and a bit scared of the results now! I have this feeling that it will come back fine as everything else has but regardless think I will ask the doctor for a sleep study anyway as I guess it could be other things.

Sorry I'm late to this discussion, and hopefully you are now on the way to finding out whether sleep apnoea is at the root of your problems, as if I'm correct in who you are I believe you may have already done our test which we're just awaiting to arrive back here, and once it does it will tell us what's going on.  Our home screening test has proven to be as accurate as the hospital ones - most of whom do home sleep tests, and some of the hospitals even use our report as a diagnostic.  We don't offer it as a diagnostic, even though our chairman and medical advisers are fully qualified to do this, because our aim is that people will be treated at their local clinics, as we cannot emphasise enough how important it is to have a face to face consultation with a full medical history.

Your story is so typical of people who have struggled with undiagnosed sleep apnoea for most of their lives, but let's wait and see what the report says before jumping to conclusions and we'll be in touch asap when the device arrives back here.  I will say though that my story was similar....had every test under the sun, and the last resort was actually the one thing that was overlooked!

Hang in there as we're nearly there....

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