Am I wrong? 11yrs of suffering, HGV Driver

[yorkie9668]

My symptoms started back in 1999, I was originally diagnosed with M.E. C.F.S. but never thought I had that.
Then last year after years on and off work my Docs investigated possible MS, MRi, Cat Scan etc etc........
Nothing evident, mind you I never got inside the MRi machine, so Doc signed me fit to work again in May.
Back to work I went driving a 44 ton fridge artic throughout Europe, not knowing what was wrong with me, but getting worse everyday, but also knowing I was putting other road users and myself in danger, so 3 weeks ago I had to stop driving, went back to my Doctors after a friend who suffers from OSA suggested I discuss it with my GP.
The funny thing is I have been telling my Docs for years I have major sleep problems, lack of it, waking at odd hours for no known reason, been unable to go back to sleep, waking with a startle etc etc.....
Last Tuesday I saw Dr White at York Sleep Clinic, and today I collect the equipment to test me overnight, so here goes another rollercoaster :-}
If I am honest I never feel like I could just drop off to sleep, but I am very very tired all of my waking day, so tired and fatigued, I awake feeling worse than before I went to bed, even though I would have gone to bed totally exhausted after doing a normal 15 hour shift.
What I want to know is this, can a sufferer of OSA have the same symptoms as me, especially if they have suffered from this for over 11 years, I am very lethargic, my head feels like it is in a cloud, I have vision problems (which do not show up at the Opticians), dizzy spells, coordination problems, sweating especially at night and more, I could be here all day.
Sadly I lost one of my twin Daughters 3 years ago, Friends and Family think I am suffering from Depression, sorry no, I have had these symtoms along time before my Daughter was taken from me, I really do not know what to do next if this test comes back as not OSA.
It sounds sad that I can wish it is OSA, but I need to know what is wrong with me, I am 42 and have a good life, but it would be a lot better if we knew what was wrong with me.
So sorry for the long message, I hope you can understand my plight, I will keep you updated once I know more.
Mark

[pavarottiman]

It's a common problem.

Hi Mark, I too had a similar problem as you are experiencing now, I went to my doctor over a period of about 2 years complaining if lethargy, tiredness, waking at night etc, at the time I had been diagnosed with diabetes and all he could suggest for my symptoms was my diabetes. I had tests with a diabetic consultant, test after test which showed my diabetes under control, finally my doctor in no uncertain terms told me that he had no ideas as to why I was feeling the way that I was, and made it apparent that he wanted me to stop wasting his time.
I was on a flight from Aberdeen, when a little old lady sat next to me told the stewardess that she was concerned as I had fallen asleep and appeared to stop breathing, the stewardess woke me up and asked if I was ok? and did I have sleep apnea?, I had never heard of it, she told me her brother had the condition, armed with this episode I went to the surgery and saw the new doctor that had started with the practice, told him my story, had the tests for OSA and the rest is history as they say.
Strange thing is I also had problems with reflux, which I had had for about 12 years, my first doctor told me it was my lifestyle, when the new Doc asked if there was anything else troubling me?, I told him about the reflux, have you heard of Helica Bacta pylori? he asked, long story short, had the blood test for that and yes, I had it, can be in your stomach for years and cause a lot of pain and discomfort, course of tablets, and that was also sorted, so in escence, no I'm not surprised this has gone on a long time, your symptoms strongly suggest OSA, lets hope you get some help to sort you out.
Best of luck.
Alex.
I have been on CPAP for the last 8yrs, took to it intantly, and what difference.

[Tigers Fan]

No bet!

Hi Yorkie9668

If I was a betting man I wouldn't be able to lay a bet that you had OSA - no-one would take it.

Sure as shooting, you'll be a hose-head before much longer.

TF

[Berneta]

Sounds Like OSA

Hi Yorkie, Yes it does sound like OSA--- but there are other conditions that have the same or similar symptoms, to name a few : Parkinson's, ALS, Immune System Disorder, Diabetes, Heart Problems, Brain Tumors--just to name a few. But those things are usually discovered before 11 years have passed--- but they can't always be ruled out right away. Because of the time involved I am guessing OSA--but its a guess, and you won't know for sure till you go through a sleep test. I am so sorry about the loss of your daughter. That was awful, and you have my sympathy. THAT and feeling the way you do is ALL depressing--so you can't help but feel depressed. There is no shame in that. But being a little depressed is also a symptom of OSA. THE good thing if its OSA-- is that there is a treatment for it. And its not unusal for OSA to go on for years without a Dr getting it figured out. Mine was blamed on Diabetes for years too-- my sleep problems were discovered accidently while I was in the Hospital for something else entirely! I think Drs are only just in the last few years taking OSA seriously. At least that is true here in the States. They blame the fatigue on everything but OSA: being overweight, not going to bed early enough, working too many hours, depression, diabetes, and other conditions, I had lots of MRI's, Cat Scans, EEG's, EKG's--and nothing showed up as a reason for my mild seizures. (Which have stopped since begining CPAP Therapy.) I still take s small dose Valium just in case I have a seizure. (It stops them.)
At first the Neurologist told me I had a "psychological" problem-- because nothing showed up on the machinery, Then during the next 3 days and nights they discovered the Sleep Apnea. I was hooked up to machinery that sounded off with bells, whenever I stopped breathing! And since I wasn't sleeping that was often. I sure got tired of Nurses slapping and shouting me awake. Drs aren't perfect. If you need to, get a second or third opinion. But--- I would not be surprised that your sleep test will show your problem is OSA . Good Luck, Berneta

[yorkie9668]

Many thanks for the replies, well what a totally rubbish nights sleep I had, just returned from York Hospital where I returned the monitor.
I was informed I would get my results within 6 to 8 weeks, this is crazy, surely they can inform us quicker?
Sounds daft but I really hope it is OSA, otherwise I have no idea what to do next, the drive to York was horrendous, 11miles, I frlt like I was in a Trance all the way.
I will keep you all posted, many thanks again from a very tired Yorkshireman

[Richard]

Hi Mark,

If you are concerned about your hospital's laid-back response to informing you whether or not you have OSA, there's nothing to stop you phoning them next week to 'progress' the results.

Do that, politely, every couple of days until you get the answer you want.

Take care

Richard

[yorkie9668]

Just spoke to the Hospital, a ltter is coming out to me, the Doctor wants me to have further tests, taking another type of machine home.
No further info until the letter arrives, anyone have any ideas?

[Tigers Fan]

Probably

Hi yorkie9668

Probably a APAP (Automatic rather than Constant) which will tell them what pressures to set your machine to.

Sounds like you are on the hurry up list - but, as with all things NHS, wait and
see.

Methinks you are on the road to HoseHead-dom!

Good luck

TF

[yorkie9668]

I still do not know if I have OSA mind you, would a machine like this mean I have low or high apnea?
My head is banging off walls with worry, thanks for the reply

[Fredxx]

If you have OSA and they are sending the machine, the OSA will be treated...and you have nothing to worry about! (this is the most likely). It sounds to me like the first test indicated you do have evidence of Apnoeas and they are sending a machine to confirm it and determine the treatment level.

whether the OSA is mild or severe only tend to determine whether you need the machine set to a lower or higher pressure; that pressure will be what the machine is being sent to determine.

OSA is some part of the airway collapsing as the muscles relax, blocking the airway. This means you stop breathing, wake up, the muscles start to work again and the airway opens. Typically in OSA that happens many times an hour, meaning you never get meaningful sleep. The CPAP pressure you will need is the minimum to keep the airway inflated, and that varies for each of us

Good luck with it all

[Tigers Fan]

Fredxx has it precisely right. You are at stage 2 of getting started on treatment. This is the end of any 'need' to worry and the beginning of getting your life back.

Your biggest concern within the next few days will be how to stop the damn mask leaking!

TF

[Fredxx]

And when it comes to stopping the mask leaking, remember tighter is not better! Just tight enough to stop the leaks, then a little tweek tighter

[yorkie9668]

Still no letter, so I called the Hospital again, I am been sent an appointment to collect a machine to to a Polysomnography, no idea what this all means?

Do I suffer from OSA or not?
A simple question, I will have to wait for the letter, according to the Hospital Cadio-respiritory dept the Doc needs to check further doh!

[Tigers Fan]

That means you are getting the best investigation possible and they will know exactly what is wrong with you - and thus the best treatment. Unfortunately, you are left dangling .....

TF

[yorkie9668]

I understand that, but was more worried if it is not OSA, I cannot seem to find much reference in regard this, time will tell.

http://www.mayoclinic.com/health/central-sleep-apnea/DS00995/DSECTION=tests-and-diagnosis

This link was helpful mind you