Newbie - pregnant and scared!

[silver6]

Hi,

After years of suspecting I had sleep apnoea, I have finally been diagnosed. Apparently, I stop breathing about 30 times an hour - right on the edge of severe. To make matters worse, this diagnosis has come right in the middle of a long awaited and much wanted pregnancy (have lost six early pregnancies before this one), which is also high risk due to my pre-existing high blood pressure, a clotting condition, low thyroid and insulin resistance.

To make it even worse than that, I currently have a horrible cough/cold/sinus infection thing which has gone on for 5 weeks and means my nose is either totally blocked or very snotty and I have a tickly cough. It was in full force when I went last week to be fitted with my CPAP machine. Totally disastrous! I was given a full-face mask (because of the blocked nose) and I freaked out completely and couldn't keep it on for more than half an hour - and it was half an hour of torture! I felt like I was being smothered.

I am a) terrified that my stopping breathing will affect the baby (though so far the consultants - both sleep and ob/gyn - have been very reassuring about that) and b) that I will not ever be able to tolerate the CPAP machine. The clinic were very good and provided me with a machine that eases up on the pressure when you breathe out and that has a humidifier, but I really haven't been able to use it and my GP has told me to stop trying as she's worried the stress will be worse for the baby than the apnoea.

The medical folk have today cooked up a plan between them whereby I am on heavy duty antibiotics to try and shift the infection, steroid nasal spray to try and clear my nose (in case this is also a pregnancy issue - apparently stuffy and runny nose can be ) and they then want to try me on a nasal prong mask.

Are there any wise folk on here who can give me some reassurance on getting to grips with CPAP? I volunteered to have a mandibular device instead but the consultant doesn't feel that would be an answer for the apnoea. In the meantime, I am sleeping propped up and on my side in the hope that this will help a bit - husband reckons this is kind of working.

Cheers,
Silver

[ElleCee]

Hi,
Welcome to the site, you have come to the right place for suggestions etc.
If you are really phobic about the mask I would suggest wearing it around the house during the day when it is not connected to the cpap machine. Get to know your mask and make friends with it. That way, when you go to bed you are halfway through the battle of coming to terms with it. When you do go to bed and plug it all in and connect yourself up, don't try going to sleep straight away. Try reading, watching the telly or listening to the radio. That way you will ease yourself into it slowly and without any of the panic involved.
Cpap and mask are your friends, they are there to help you live a normal life. If it were a plaster for a broken leg you would not question it, so do yourself a favour and take it slowly and gently and it will be fine.
All the very best to you and your baby.
Lorraine

[Tigers Fan]

Cool, calm, relaxed

Hi silver6

Lorrine's advice is exactly right. Practice with the mask dring the day, whilst you are busy doing something else to distract our mind. Start for short periods and build them up. When you are accustomd to the mask , connect yourself to the CPAP and start over but with pressure. There are thousands of us and we all got used to it in the end (I managed a breath or three my first time and took an age to calm down - now I don't feel safe if I try to sleep without it).

I expect you are using the ramp feature and if so, you might consider increasing the start pressure. Low start pressures can make you feel claustrophobic/ suffocated.

You say you've had OSA for years - so getting stressed out now you have a diagnosis isn't going to be best for you or baby, is it? Apart from being good for you both, being laid back is the best approach to CPAP.

Good luck. Be gentle with yourself!

TF

[shuckie]

Hi Silver!

Hello and welcome to the forums!

I agree with all the comments you've received thus far. The mask is something new at the moment and may take some getting used to, however if you take your time and keep reminding yourself that it's there to help you, you should become more comfortable with it as time goes on.

I didn't like wearing the mask at first. I felt smothered/suffocated and kept taking it off before I could go to sleep. That said, I became progressively more tired as time went on, and I eventually fell asleep with the mask on because I was so tired. I had problems with my dry mouth but a humidifier helped with that issue, and on the occasions where I've managed to sleep for a few hours wearing the mask my partner and I have definitely noticed an improvement with how tired I look.

I'm aware you have enough to think about already with your pregnancy and I don't wish to add to any stress you may already be under, however you may want to bear in mind that untreated sleep apnoea can cause other health problems in the future. Therefore, it is worth persevering with the treatment and ensuring that you work with your clinic to get the combination of mask and CPAP settings that you are most comfortable with.

I agree that a higher starting ramp pressure can relieve the feeling of being suffocated as I had this problem, and after figuring out how to increase the starting pressure myself I definitely felt better. Also, ask your sleep technician to ensure that EPR (Exhalation Pressure Relief) is enabled on your CPAP and try wearing the mask in the clinic with your CPAP running with EPR enabled to ensure it feels comfortable. EPR reduces the pressure slightly when you're breathing out so make the experience feel a bit more natural. The amount of pressure relief can be altered by the technician which is why I suggest you have this set while you're at the clinic so you can be sure of feeling comfortable when you get home.

Please let us know how you're getting on and don't hesitate to post again should you need any further advice or support.


Kind regards

shuckie

[silver6]

Still Struggling

Hi folks,

Thank you so much for the replies and encouragement. I'm afraid I'm still having a tough time with it all. I'm on to my third mask and I still haven't managed to sleep with it on. I'm getting to the stage where just seeing the thing is giving me slight panic attacks. I KNOW that the machine is there to help me, but I just can't use it - and that's the worst bit - I panic when the machine is on that I can't breathe properly and then when I take it off I panic that I'm harming my baby by not using it. It's making me really miserable. I think one of the main issues is that it turns out that the cough and stuffy nose seem to be pregnancy symptoms. I've had them for almost 10 weeks now and while the nasal spray has worked a little, my nose is far from completely clear and even with the humidifier, the air blowing into my mouth/throat makes me cough. I have been trying to use my machine while upright in front of the TV and I can just about stand it but when I'm lying down, it's just impossible.

I asked my specialist about a mandibular splint, but a) she doesn't think it works for apnoea, just snoring, and b) she said they're having fitting issues at my clinic. Does anyone know if it's possible to get hold of one privately and whether a splint might help, even a little - anything has to be better than no treatment and panic attacks? I am going to keep trying with the machine - I know that it is the most effective form of treatment - but being pregnant, I'm kind of on a short timescale for improving things and at this rate, the machine and I are not going to be friends in the very near future.

I am sleeping on my side (at 25 weeks pregnant, I have little choice!!) and when the cough etc is bad, I sleep propped up. My husband seems to think that my snoring and apnoea aren't as bad - he hasn't noticed me stopping breathing recently, so I'm hoping that's helping. It's taking an age to go through the clinic - I saw the specialist about 3 weeks ago and she gave me the nose only mask (no good - now using a "liberty" nose and mouth thing) and I go back to see her in another 4 weeks for a review (she talked about maybe assessing me overnight again and giving me oxygen - not sure whether she meant with or without the machine). I know this is not bad timing on the NHS, but in terms of my pregnancy, I really want to do SOMETHING as soon as possible.

Sorry for wittering on - any advice on splints anyone?

Cheers,
Silver

[James @ Intus]

Hi Silver,

I can fill you in on the splint side of things a bit.

The vat majority of mouth splints are of such low quality, they will indeed only be good for snoring. The fact something stops your snoring is readily mistaken by people for it also stopping apnoeas. That often not the case. So if you stop snoring, apnoeas can continue, or hypopnoeas which also interrupt sleep but are often without sound or the gasping.

There are, however, good splints that are clinically proven to tackle mild and moderate sleep apnoea. In the States, Germany and Scandinavia, you will get more of a choice in good models. Here, they are few and far between. We happen to do what we still think is the Rolls Royce of them all, the SomnoDent. It's very, very good and very comfortable. Precision engineered and fully titratable so it will be great for anything but severe apnoea. As it's so high quality, it's also not cheap. It costs in the similar range of a full Auto-CPAP kit, depending on the dental work that needs done it can be higher.

So they do exist, but not through the NHS, as they run behind the times in this field and don't have the funding to use the top-end splints.

[silver6]

Splints

Ah - that is what I had heard a while back (I would swear it was from the clinic itself, but they are now saying otherwise). Any idea where I would get one fitted in the south of Scotland?
Silver

[James @ Intus]

I know one just East of Glasgow and one in South Newcastle. If you drop us an e-mail through that website, we'll have full details for you.

By the way, we'll also be in Perth on October 2nd, at the SASA AGM/patient day.

http://www.scottishsleepapnoea.co.uk/Conference.html

[silver6]

Thanks - I assume that's the UK SomnoDent website. I've dropped them an email asking for details. As I sit here in bed, typing away while wearing my CPAP, it also occurs to me that a splint would be a much better bet when the baby comes - much easier to get up multiple times a night wearing a splint than disentangling myself from all the tubes and wires that go with the machines!!

Only thing - in terms of DVLA, will splint keep them happy? So far, I haven't told them about my apnoea, as the info from my clinic says you only need to do that if you experience sleepiness while driving, which I don't & I only really drive to work and back and that's ten minutes each way, but as I'm pregnant, have to carry a lot and there's no public transport to and from work, I'd be totally stuffed if I couldn't drive. But I'm aware that some places say you HAVE to tell them regardless. I'm lucky in that I only tend to feel sleepy/fall asleep when inactive (eg watching telly or when a passenger in a car). I've never had trouble with sleepiness/falling asleep while driving, talking to someone etc. Wonder if it's something to do with oxygen levels, as although I had up to 30 episodes an hour during my sleep test and my levels went down, they apparently came straight back up every time.

Cheers,
Silver

[James @ Intus]

Oxygen shoots up instantly after an event, that's the usual case of an apnoea.

The DVLA don't care much how you are treated, as long as the end result means safe driving. Mandibular advancement, as it's called, is world-wide recognised as effective treatment for mild to moderate OSA. You will have no problem quoting clinical trials to anyone who questions.

And yes, a splint is much easier to wear, you will be more mobile, both at home and when travelling.

[shuckie]

Hi silver!

Only thing - in terms of DVLA, will splint keep them happy? So far, I haven't told them about my apnoea, as the info from my clinic says you only need to do that if you experience sleepiness while driving

As far as I am aware you are legally obligated to inform the DVLA once you have been diagnosed, regardless of whether or not you are sleepy during the day. If you don't tell them and they find out by some other means, such as your hospital informing them for whatever reason, then you may be fined up to £1000 and have your licence revoked anyway.

I recommend that you download the medical questionnaire from the DirectGov/DVLA website (http://www.direct.gov.uk/en/Motoring...lA-Z/DG_185769) in addition to printing off a personalised copy of your Epworth Sleepiness Scale report from the British Snoring website (http://www.britishsnoring.co.uk/slee...ness_scale.php). I did both when the DVLA requested an update after I started CPAP therapy, and I think it was at least partly because my Epworth results fell in the "normal" range that I was able to keep my licence.

I know you're concerned about not being able to drive, but if you can honestly say that you are free of excessive drowsiness, then hopefully the DVLA won't revoke your licence.

You should also inform your car insurance company so they won't have an excuse to invalidate your policy.


Regards

shuckie

[Tigers Fan]

Right on!

Hi Shuckie

Well done you for taking the moral position about DVLA and OSA. It isn't about being clever enough to deceive the DVLA, it's about keeping oneself and other folk safe from potentially sleepy drivers.

The usual way an undeclared OSA driver s discovered is when the police check medical records after an "accident" they suspect was caused by a driver falling asleep.

I don't think the DVLA mind what sort of treatment we get for OSA provided it is effective, so that our Epworth results are low - so we are not likely to fall asleep at the wheel.

To clamber onto a soap box briefly, the same goes for drink and drug drivers as well as mobile phone using drivers. The Law is there to try to keep us safe from the idiots who will not see the sense of it. Again, they are to be found at the scenes of a large number of "accidents".

TF

[Berneta]

Panic

Hi Silver,
It sounds like you have gotten lots of good advice from everyone. The thought of trying to get used to a CPAP while pregnant is enough to cause any woman to panic. Esp. after having lost some babies. Do whatever makes you feel comfortable, and have less panic. If sitting up makes it easier for you--maybe you could try a hospital bed for awhile. There would be no fuss trying to stay propped up! I don't think you need to worry too much about the baby not getting oxygen-- if you are not passing out constantly day and night. As long as you are breathing enough for you--the baby should get enough oxygen too. But your Dr might want you to use some oxygen "just to make you more comfortable". (less panic) One thing you already know is that you need the CPAP--so please don't give up on it. Try using it hooked up and running several times a day for short periods. When you feel more comfortable with it--try it for longer periods. You should be resting more now anyway. If you use it just for short periods at night for awhile--that is still better than not using it at all. The main thing is knowing that its ok if you can't use it all night long at first. Hardly anyone does--so don't panic. Just try to make yourself as comfortable as you can. Best Wishes, and congrats on the baby! Berneta