Sleep apnoea/laryngospasm

[Fennella02]

Hi everyone. Hope you're all having a great Christmas.

In the early hours of Tuesday, I awoke to the now familiar but terrifying feeling of complete suffocation. I have had a cold for the past 10 days and the pain in my chest (right, upper) was severe and persistent. Within 15 minutes of phoning my GP, I was in her office being diagnosed and treated aggressively for pneumonia and thanks to this approach, I have made a quick recovery. I take Mycophenolate & low dose prednisolone for lupus and have weak resp muscles (?cause) so can find it hard to breathe well when lying down.

My Consultant uses the terms Sleep apnoea and laryngospasm interchangeably but is not investigating/treating for either. I am 47, female & slim. I am due to see him by Feb (at my GP's insistence ) and I would be grateful on any tips on how to drive this appointment. My Consultant has a very 'relaxed' approach and favours 'surveillance' but this isn't particularly helpful and this recent painful episode has changed my focus.

Many thanks for your time. Clare x

[O2Trees]

Im glad you're over the infection now Clare, sounds like you had good treatment for that. Since you say its familiar, I assume you don't only have the laryngospasm while you have infections though the one you describe might have been worse.

I have something similar, though for me only when I'm being treated with pred during a flare-up. I was told it was laryngospasm as my throat would seal off and no air could pass either way which felt like suffocation. But now Im thinking that it may be excess throat mucus closing my throat. However i do have some experience of the panic this creates. I don't know if you have low oxygen but many with sleep apnoea do, and i would want to enquire about this and discuss with your GP if 24 hour oxygen monitoring would be appropriate.

If you are having extreme and totally understandable panic attacks about this feeling of suffocation, then I would feel that surveillance isn't enough.

If its any help, my respiratory physio told me laryngospam is not life-threatening even though it may feel so. Although it feels like you are suffocating, if it goes on too long you will pass out and your muscles will relax and the airflow will be restored. But when you've just woken up in a panic it might be hard to be that logical.

I would suggest calling the BLF helpline 03000 030 555 after the holiday to get advice about how to approach your next appointment. They are great at that. Good luck

[Fennella02 in reply to O2Trees]

Hi O2Trees and thank you for your input. I think we have spoken before on this subject and some of the responses to your post on this subject were quite shocking. This last episode was no more severe than the others but I think I hauled that first breath in so very hard that I may have aspirated forcefully - the severe pain was immediate, ripped right through my chest and lasted for hours and perhaps this is the cause of the pneumonia? This is a worry as my immunosuppression makes infections more threatening. I'm sure you will agree that there is little time for panic attacks - all instincts kick into survival mode. They call it 'dry drowning' - how apt that is.

I haven't seen my Consultant for a year and I'm keen to be fully informed for this appt. He has mentioned possible diaphragm pacing and/or overnight O2 to my GP but I have not done any sleep studies etc. I will ring the BLF in the New Year, they are fantastic support.

I hope you're keeping well and have had a great Christmas. Best wishes. Clare

[O2Trees in reply to Fennella02]

I remember all that post and replies Clare. Im sorry this is so horrible for you - that sounds awful, the possibility of aspirating stuff and causing the pneumonia. Dry drowning I've come across, though on another site i saw it compared to water boarding, so not dry! But whichever, the point is that the windpipe is blocked so that air can't go either way. I certainly don't have this like you do - I've not had it since last winter. But i remember that i couldn't do anything to make the air go in or out, i just didn't have enough oxygen as sats were right down. Luckily after about 30 seconds (an eternity) my airway relaxed a bit. It kept happening and we went to the GP who blue lighted me to hospital, where that physio explained as in my post above.

A sleep study seems a good idea, better than 24hr monitoring as that is just a monitor worn on the wrist. I don't know where you are in the country but i know the Homerton in east london where i used to live and still see my consultant do sleep studies.

I hope you get some answers and things improve. Wishing you also a happy and healthier new year. Warm wishes,

[RibvanRey]

Although I agree with O2Trees, I do think that the least you should push for is the over night wrist monitor. Like wearing an oversized wristwatch that has a start button and a short lead to a finger tip monitor. Just put it on at bed time and push Start. Then take it off when you wake up. Then take it back to the hospital and leave it to them to download the data and analysis it. The next time you see you Consultant he will be able to have seen exactly how often you have stopped breathing during the night. They aren't the most accurate methods but they are the cheapest and easiest way to tell if someone has Sleep Apnea. Then they can see if it is serious enough to investigate more.

Regards Rib

[Fennella02]

Thank you Rib. I didn't know that such a monitor even existed and it does seem like a sensible place to start. All advice is gratefully received and leaves me better placed to discuss future options with my Consultant. Best wishes. Clare

[NickyD]

Hi Clareb67 I have just found out that the condition i have is called Laryngospasm. I have been having breathing "episodes" on and off for 30 years. I had one yesterday when driving on the M40 in the fast lane and had to pull on to the hard shoulder to be able to relax and concentrate on my breathing. The episode was scary and the where and when it came on really upset me. Is there a support group for people with this condition? NickyD

[Fennella02 in reply to NickyD]

Hi Nicky. I'm glad at least that you know what is causing these terrifying episodes. I felt much happier when my consultant gave it a name. I'm not aware of any support groups and I think that its terror rating is under recognized. I haven't had a bad one for 10 months but toothpaste caused a minor one only yesterday. Are you on PPI's? Reflux is a huge trigger, even if its silent. Do keep in touch xx

[NickyD]

What are PPI's? I have been getting the episodes on and off for over 30 years but have been to my Dr who had never heard of it. She asked her other Dr's in the surgery and they had never heard of it. I went to hospital for an ENT examination and the consultant had never heard of it - you start to wonder if you are making it up. They put a camera down my throat and said it was not reflux. I had an episode yesterday when i was driving on the M40 motorway in the fast lane at 75 mph and it freaked me out big time. I have had them where there is just NO air going in and others where there is a reasonable amount. I rate them on a scale from 1 - 10 where 10 is the worst you can imagine. Yesterday was around a 4 - 5, but there was no way I could drive as i was coughing and trying to breathe. All the other episodes have been where I can stop what i am doing without any problems. I did not sleep last night thinking of the "what if's". I can have them day or night, indoors or outdoors, eating or not eating etc etc. It is hard to find a common denominator. it is SO good to find a site where others know what I am talking about and that you are not making it up when you say it is very scary. My confidence was hit big time yesterday when I was in my car on my own. Not nice . NickyD

[jenss in reply to NickyD]

Well Nicky, PPI stands for Proton-Pump Inhibitors a class of drugs that suppress the production of acid in the stomach. You take them once or twice a day and they reduce the amount of acid produced and therefore prevent silent and non-silent refllux. Both forms of reflux can lead to serous complications if left untreated including cancer of the oesophagus. I cannot believe that your drs have not heard of PPIs. Please go back and get checked out as access stomach acid can come up during sleep at night and can be aspirated into lungs and cause serious damage to lung and other tissues it comes in contact with. Best wishesxxx

[NickyD]

I did have a camera down my throat and they said there was no sign of reflux. Do you get an acid taste in your mouth? I have never had any kind of acid problem ever.

[jenss in reply to NickyD]

Hi Nicky, with reflux you do not always know that you have it -so no acid taste and they call it silent reflux. As you have had the camera test its seems unlikely that you have acid reflux (sorry I did not read that earlier when I replied regarding the PPIs). Looks like you may have other triggers for the spasms- can you related to having lots or little food in your tummy? What does your dr say about management? What could help?

Regarding the PPIs don't use them until you have to as I have heard that you can never get off them again once you have started them-not sure if that is true. You may still want to discuss with your dr to maybe not put you on PPI (for the reason that supposedly you can never come off them) but to put you on other antiacids for a trial to see if acid plays are role in triggering your spasms. Good luck and I hope you get to sleep tonight and you and your drs can find a way to better manage the spasms. Best wishesxxx

[Fennella02 in reply to jenss]

Your advice is really sound Jenss. The only thing I would add is that I take Omeprazole (PPI) for a few days or a few weeks as I feel necessary and am fine restarting/quitting at intervals. A fever, spicy food, spell of anemia or anything really can upset the pH of my stomach and restart the reflux - silent or otherwise but it does settle down again.

None of my docs had come across the laryngospasm/VCD either. Not even the radiologist who read my ct scans it would seem. Everyone seemed to play Chinese whispers until they were all convinced that I had had 2 pulmonary emboli. My resp consultant, arrogant and obnoxious though he is, added ct + symptoms + existing conditions ie lupus = myopathy/reflux & Laryngospasm. I think that once the predisposition us there, the attacks can still occur but hopefully lower on your scale of severity.

The last bad one, Xmas 2014, sent me to hospital with lungs full of God-knows-what. Not looking forward to a repeat any time soon.

[NickyD]

Thanks for coming back to me. Just having someone to talk to makes a huge amount of difference. The earliest i can book an appt to see my Dr is 24th November, instead i have decided to queue and wait to see him Monday morning 8.15am when the surgery opens at 8.30am. Never actually met him, moved house over two years ago and have seen other doctors instead. I think i will make a point of seeing just one when talking of Laryngospasm. Take care and hope you are ok. N