Does anyone wake up feeling like they... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Does anyone wake up feeling like they are suffocating? Some mornings, I find myself struggling to breathe while I'm asleep,

iwantsimple profile image
28 Replies

dreaming that I'm not breathing right and waking up off and on to breathe better again, but when I get up and move around, after a while, I feel better and breathe right. I have been checked for sleep apnea, and I do not have it. I'm wondering if this is an APS thing.

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iwantsimple profile image
iwantsimple
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28 Replies
MaryF profile image
MaryFAdministrator

Hello, sorry to hear that you are waking up in such an unrelaxed manner. I suppose the first thing which springs to mind beyond having your lungs checked out, would be to be checked for sleep apnea, and also perhaps your thryoid, as this if not diagnosed can make the throat feel a bit funny. I hope it passes. I am sure others on here may have similar experiences to share with you. All the best Mary F x

iwantsimple profile image
iwantsimple

Hi! I've been checked for sleep apnea and don't have it, and my thyroid tests come back clear. My throat doesn't really feel funny. It's more like someone's squeezing my chest or lungs from inside. You know the feeling when you've eaten too much and can't take a deep breath? That's what it feels like. After a few hours awake, it seems to go away, though, so I'm thinking it is somehow related to lying flat.

MaryF profile image
MaryFAdministrator in reply to iwantsimple

Do you have a history of PE's with any old scarring, or a low level chest infection - worth checking it all out! Hope you feel better soon x

iwantsimple profile image
iwantsimple

No PE's, but I had pneumonia multiple times about 10 years ago. Other than that, nothing. I'm going to have to talk to my doc about this, I suppose....

Glitterwitch profile image
Glitterwitch

Hello, I sometimes wake up feeling as though I am being sqeezed or there is an elephant sitting on my chest! I can always breathe though and I find that taking a few deep breathes and thinking nice thoughts helps to calm me down. Have had lots of chest xrays and scans but nothing shows up.Hope this helps to feel that you are not alone, but sorry I cant help more then that. xx

TreyBon64 profile image
TreyBon64

Hello ... I, like Glitterwitch, have problems with my breathing. I find it helps that I sleep propped up in bed, but then again I have to do that as I have other problems. Due to the APS I have Rheumatoid Arthritis, Coeliac Disease, Meniere's Disease, Tinnitus and now due to cluster migraines and other symptoms I've recently had an mri to check for MS or tumour. Thankfully that was clear but the migraines still remain. All blood tests are clear but the MS symptoms are getting worse. But getting back to the breathing/chest thing. I find I get the heavy chest feeling when it is warm. I just put it down to APS and try to deal with IT and all the other symptoms day by day. Good Luck and I hope you find a solution that makes you feel comfortable and less stressed. Oh and stress can make it worse too Take care XX

3boys profile image
3boys in reply to TreyBon64

Cluster stink! I haven't met anyone else with them.I have been dealing with them for 25 yrs! I also have RA. I hope you feel better. What are you on for your RA? My O2 levels are real low at night, I do have sleep apnea,but the low O2 baffles my Doc. One says its SA, The other says it's pulmonary.

GinaD profile image
GinaD

Has anyone suggested a sleep study? I myself find that if I am in a position that favors the bad hip -- which would be with my legs elevated, then my chin can dip toward my neck at too acute an angle. And if my chin is that low, then my breathing can be strained. I think my esophagus is not as flexible as it once was. For me I currently must remember to adjust my pillows carefully to make sure my head and chin are in a neutral position.

A sleep study will show docs exactly what/ how is happening and you may find relief with cheap nasal strips or with a CPAP machine. Good luck.

Gina

iwantsimple profile image
iwantsimple

Hi, and thank you for your responses! It is so good to know that I am not alone in this! Of all the symptoms APS has brought, this breathing thing seems to be the most unnerving for me. I did have a sleep study done before APS was detected, but it came back clear and I wasn't have THIS sleep problem at the time. I will talk to my doctor about doing another one, though, since this is a new symptom, and it has been many years since I had the initial sleep study done. Like Glitterwitch, I find that taking some deep breaths when I awake helps. It seems to take an hour or two of this before I feel "normal." It really does feel like there is someone squeezing my chest. I, too, have been checked for MS (negative, thank goodness) and thought this was the "MS hug" feeling. Now that that has been ruled out, I just don't know what is causing it. I DO experience it when I am lying in a totally neutral position, as well. I never have any chest pain, though, so I'm assuming that means it can't be an embolism. Please tell me my assumption is correct. :)

SueLovett profile image
SueLovett

I get this too. It is very frightening.

I wake up suddenly and feel as though I am suffocating. I also wake up gagging because I can't swallow due to extreme dryness and I can't open my eyes either because they are so dry

Sorry others experience this distressing symptom

Ditendra profile image
Ditendra in reply to SueLovett

Hi, I also have exactly same problem. I don't have this elephant on chest feeling, but I can't breath and can't swallow because mouth is dry and also I hardly open my eyes cause of sudden wake up. Plz let me know if you still have this problem or did you fix it and if yes, how did you fix it?

Lure2 profile image
Lure2 in reply to Ditendra

Hi Ditendra,

I see you have now landed on a 5 year old question!!

I also see you have joined today so I wnat to ask you if you have got HS/APS as that illness we all have here and that is the only thing we can give answers on as we are not even medical trained.

Your symptoms could be the symptom of several other illnesses so please see a Doctor and if he says you have HS/APS you are welcomed again.

Best wishes from Kerstin in Stockholm

Ditendra profile image
Ditendra in reply to Lure2

Thank you

Suzypawz profile image
Suzypawz

Hi, I'm sorry to hear you are going through this :( .....I sometimes wake up thinking something is lodged in my windpipe & if I speak or breathe in I'm going to die!! it is a very scary experience, so I do understand how you must be feeling.

They have so far sent me to a memory clinic!............to search for an answer, then to see a shrink!!!..............still no answers, they have now made me an appointment to speak to someone to do with sleep problems,.......at last! to see if they can resolve this or at least give me some answers!

I hope you too get some, Sue x

Mair profile image
Mair

I'm sorry you have this problem, but also relieved to know I'm not the only one. The heavy chest, a sensation that there's not enough oxygen in the room sometimes occurs during the night or during the daytime with activity. It clears quite quickly with rest.

I've had multiple cardiac and lung tests, even an angiogram because APS can cause pulmonary hypertension.

Everything has been ruled out and none of the docs seem to think it's APS related, so they've settled on "variant asthma", although really they act like I'm imagining it all. grrrrrrrrrrrrr. I use inhalers but they don't really help. If you get any answers I'd be grateful to hear.

Mair

iwantsimple profile image
iwantsimple

If I am able to find answers for this, I will absolutely share with everyone here! Thanks for sharing your experiences. :)

WayneL profile image
WayneL

Hi, iwantsimple.

My daughter says she experiences most of what has been described on here already, including the Elephant sitting on her chest.

Her best description so far has been like being wrapped in rubber bands that squeeze you so that you can't breathe and that you have to manually operate muscles to get air.

I have wondered if perhaps something like a C_Pap machine may be of some therapeutic value to APS sufferers.

Wayne L

iwantsimple profile image
iwantsimple

Maybe. The C-Pap is a pain in the bootie, if you ask me. I had to use one years ago when I had sleep apnea problems due to weight gain. (Sleep Apnea went away when I lost weight.) At any rate, I hated that machine! BUT, I hate not breathing more. Might be worth considering.

sk_Vignesh profile image
sk_Vignesh

You have hietal hernia where your sphincter beween esophagus and stomach is open. Now the acid comes up due to lack of gravitational pull and enters your lunch through mouth which is causing you to suffocate. To avoid this.

1. Eat only fruits at bed time

2. Eat your dinner at least 3 hours before bed.

3. Avoid coffee,

4. Use elevated pillow.

5. Sleep left (left hand down)

nationwide profile image
nationwide

Hi, I've had a similar problem..

When I wake up it feels like my breathing slows down and my body feels numb... I also have nightmares so idk if that has anything to do with it.... and wheb I'm fully awake my room seems to be spinning

danman profile image
danman

Hi,

I am encountering the same symptoms . Please tell me what is this and what is the treatment ?

shawcable profile image
shawcable

possible side effect from opiate medications, i have this happen when dosage increased. Suggest dosing earlier in day or lowering dose if possible.

Lure2 profile image
Lure2

Hi,

Do you have APS? What you describe does not sound very typical for APS.

We are no doctors here and this site is for people with APS. Better ask your GP or someone else. Hope you feel better soon.

Best wishes from Kerstin in Stockholm

Terrified6666 profile image
Terrified6666

I get eactly the same- its like i have to temind nyself to breathe- its horrible. Usually just before i wake i deeam im trying to get a blanket off my face or something but im not... i walk around for a bit n like you it goes away but had it last night i woke up with it & i was lying flat as id slipped off the pillow n today it still feels wrong. My breathing isnt right. Its like unatural breathing. Im scared as im already in a real terrified state due to ectoppc heartbeats..

phyllis55 profile image
phyllis55

I have the exact same problem. I thought it was related to my heart. Cardiologist says No. I thought it was drug related as I take several drugs. I also used to use sleeping pills in order to go to sleep and thought that was the problem. I stopped using the pills and it isn't as bad but I still have the problem. Like you, it does go away after a time that I stand up and remain vertical.

Lure2 profile image
Lure2 in reply to phyllis55

Hi,

Have you talked to your Specialist for APS about it? You do not say if you have heart/lung-issues from your APS.

phyllis55 profile image
phyllis55

What is APS that you reference? I have had MVP and now chronic AF.

Lure2 profile image
Lure2

This a a site for Antiphospholipidsyndrome (APS) Sticky blood syndrome in other words.

We all have it here and I do not know what MVP is.

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