Just a quick catch up from my last blog where I was pretty fed up and down whilst awaiting appointments.
I visited The Royal Brompton Hospital in London today for an appointment with the Sleep and Respiratory clinic.
The drive from where I live is terrible and the parking at the hospital is non-existant. The disabled bays are far and few between and cost us £20.00 to park.
But, I must say that the appointment went pretty well considering I have been trying to find a consultant to look into my breathing problems and take them seriously, for some years now.
I was diagnosed with Sleep Apnea/Hypopnea 6 years ago and it was left untreated. The breathing problem at night has become so bad I do not sleep more than about 2hours I can bearly function in the day and so am now also getting problems breathing during the day.
I did my usual stance of sending my written history and previous test results/diagnosis ahead so this could be looked at before I saw him. He praised me for being so helpful and did a variety of tests and listened carefully, which he stated that he felt my Apnea/hypopnea had got much worse. He also, noticed my problem with breathing and had ordered more indepth lung function tests, Xrays, ESG and another sleep test with in mind to supply me with a CPAP machine.
The good thing about it was that he didn't need or make any references to the problem being down to panic or stress [unlike other doctors I had seen in the past]. Also didn't insist it wasn't a problem connected to behcets, therefore I couldn't have it......such a relief to have somebody look at the problem for what it is and not make judgement.
It all sounds very daunting but not half as bad as having to carry on with not breathing properly.
I just wondered if anybody else here has to use a CPAP machine and how they are getting on with it..
Andrea
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When I first went to the Sleep clinic in 2006 it was more to do with the amount of sleep. I didn't know at the time that I had a problem with breathing while I was sleeping.
In my mind if I could just get the right amount and quality of sleep, I wouldn't feel so fatigued and have the memory loss etc that I was experiencing...to me it seemed to be the source of a lot of my problems, rather than it being connected to any particular diagnosis.
When the sleep study in 2006 showed this problem with breathing and oxygenation, the consultants said "no longer can doctors say there is nothing wrong with you" and confirmation of the Fibromyalgia and chronic fatigue was varified by them because of this test....the fibromyalgia being a secondary condition within behcets.....and the neurological symptoms were occuring at the same time.
I wasn't so overweight then, but still the neurologists [at that time] couldn't agree with the diagnosis being connected with all the symptoms I was experiencing. Since the diagnosis and treatment of steroids and more mobility problems, the problem has progressed and I am now quite a lot overweight than I was then.
My new G.P's approach has been to try and sort out the individual symptoms that have been causing me a problem with quality of life and this was one of the major factors, in my life.
This method of tackiling individual problems has been working for me. Instead of telling my neurologist and rheumatolist, where they write it down on reports, but never really investigating the problem.
I am rambling on a bit...that's why I put it on the blog for discussion, rather than a question. I think it just goes to show that we as patients have to try and help ourselves with trying to improve the quality of our lives, rather than worrying about whether it being connected to any condition or not.
Of course this does mean a lot more appointments and the stress that is connected with that, but for now it is working and I hope my blog will help others and also help me.
Improvement of oxygenation in patients during mechanical ventilation and spontaneous breathing today PEEP: Positive end expiratory pressure) and CPAP (Continuous Positive Airway Pressure) of the patient breathes spontaneously, but when forced to keep a continuous open alveollerini (COPD "patients with and so on.) Is used. Venturi masks a routine method
I'm so pleased you had a positive meeting. I have breathing problems too - not permanent but very frequent. I've been tested to the eyeballs and nobody can find anything wrong and I'm made to feel such a fraud. However, when I was bluelighted into hospital a few months back not only was my oxygen saturation low but when they looked at my blood gases it showed a very low level of circulating oxygen. It was after this that they did all the tests and came up with nowt.
I've been told 'we don't know what it is' and just left with it. I too am massively overweight due to the steroids and, although it hasn't been said, I'm quite convinced they think it's a weight thing.
I entirely understand the sleep situation. I have a maximum of 2 hours most nights and spend the days trying to keep my eyes open. A couple of times I've found myself talking to myself (I'm sure that just comes with complete exhaustion and isn't anything else. I nod my head in answer to questions that haven't been asked and it's all a bit scary really.
I've not had CPAP but I don't think it will cause you any major problems - in fact, you'll probably feel like you've got a new lease of life! Let us know how it goes.
I don't think other people realise just how terrible sleep deprivation is. Some times I find myself holding my breath, without realising because I am literally too exhausted and fatigued to breathe.
Believe me doing nothing is not an easy task for me and I am not one to be in bed. But all day I am going back upstairs to rest for an hour and then coming back down again for a while and then going back up again....I have been trying to manage my fatigue by pacing myself, but my life has reduced so much now that I am barely doing anything.
I do hope they do find something to help me, the consultant said that they would be able to treat me straight after the test, because the Doctor will be present when I am there.
Did they test you for a sleep disorder as this can have a real bad knock on affect during the day ?
LOL - I do the 'I'm going upstairs for an hour' thing and then go back down. I don't want to sleep my life away. Things are dire though: just this morning I nodded off with a cup of tea in my hand; it was the cup falling that woke me up. That wasn't the first time and, so far, I've been lucky and haven't scalded myself. I've ruined a new mattress topper though having fallen asleep with a cup of peppermint tea in my hand.
So, going to sleep doesn't seem to be a problem - staying asleep for longer than a few seconds is.
No, I haven't been tested for a sleep disorder, neither has it been suggested. Whenever I talk about the problem it's sort of brushed aside as if to say, 'well, yeah, but that's just Behcet's isn't it.'
Right now I'm feeling pretty rough, tiredness-wise and I will go off to try to sleep in a minute. I'll probably be back online within the hour.
I do hope they find a solution - or at least some help for your breathing and that this will, in turn, help you to sleep. As ever, do let us know x
P.S. Oh, yes, I'm answering this even though you've addressed it to DD (I assume desperate dan). I took a look and he's not taken part in this discussion so a little light bulb clicked on with the immortal phrase, 'it could be you.'
I am so sorry for getting the name wrong...it was meant to be you
That's another one of my sleep deprived afflctions, along with spelling and wrong words or missing them out altogether.
I have the same problem of dropping off to sleep no problem but for only a few minutes/seconds and then waking up and physicly jerking hard in the arms, legs, face, stomach. Also a short snort sound as if gasping for air. I will try and go back down to sleep again and then get the jerking and snorting starts again and this goes on and on until I am completely fed up and get up anyway....with me having slept for approx 2hrs.
Other times I get what feels like someone sticking pins in my toes. It is really like chinese torture where my body just won't let me go to sleep.
In 2006 I asked my G.P to refer me for a sleep study and this is when they found I did have a real problem after all.....it maybe worth asking your G.P to refer you particularly as your oxygen levels are dropping in the daytime...as this can be a symptom of a sleep/breathing problem.
Thanks again Di - at least I got the name right this time
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Please help me - how does the diagnoise work?
Confused 
Gastrointestinal Behcet's Anyone?
