Breathing Difficulties | Multiple Sclerosis | Chronic Illness

[@IB_Trader01]

Besides the fatigue, the not being able to catch a breath is one of the toughest things to deal with for me. It induces panic and anxiety. Sometimes Im at work and ill put my palm on my chest and try and breath in slowly and deeply, sometimes it helps if try and yawn. I just want that deep breath. I feel you pain Neil. Take care.

[@NeilBradleyMS]

John Neufeld Hello John, I completely understand.. it’s just such a horrible feeling isn’t it. I discovered my problem was medication, I was taking Oral Morphine (Oramorph) for pain. Once I’d stopped taking it the weird breathing symptoms went away. I really hope you start to feel better very soon. Thank you for your message, it’s nice to hear from you .. take care.

[@lisabowers1435]

I have them have for 15 years to the point I literally stop breathing for 2-3 minutes I sleep better in my chair in an up position. It's scary but I come back and when I do I shake all over from the stress it had on my body.

[@NeilBradleyMS]

It’s very scary and I’m sorry to hear you’re suffering with this. It now only happens occasionally to me, but it’s so unpleasant when it does. I hope things improve for you.

[@RobdeKlerk-qg6lc]

Exactly the same here....so scary

[@kaldea6111]

Been experiencing this recently and even tonight! I found this video because I felt this way. It causes me to not sleep some nights because I’m worried I might stop breathing if I sleep. Scary feeling

[@NeilBradleyMS]

Hello there, thank you for your message. Yes indeed, it is very scary and I recall thinking and feeling exactly the same way. For me I discovered it was a side effect of a medication, so you might want to consider this yourself if your taking any medication. I hope you manage to figure out what the cause is, and hopefully resolve the problem.

[@Pixie_Salt31]

I felt this a couple days ago when it was hot outside. I usu tolerate heat well but am in the middle of a relapse. As you said, I don't have a breathing problem either, I but I had to consciously make myself breathe and it was a terrible struggle. As soon as I was able to get in my car and turn on the ac I felt my body cool and return to normal breathing...Caused a lot of anxiety, panic and frustration, but seeing something like this on the internet makes me feel comforted and understood. This is 3 years old lol....but I still want to say thank you for posting it.

[@NeilBradleyMS]

Hi Lauren, amazingly you are the first person I believe that has truly experienced the same thing. Yes, breathing should be a subconscious thing, we should not have to even think about it. But when this was happening, I felt I’d got to consciously intervene otherwise I would stop! It was very scary and, from time to time still happens too. In the video I said I think it was some pain medication (Oramorph) I was taking at the time, but I no longer believe this is true because once again, I’m having to take that same medication, and it’s not happening now, well very rarely. I’m sorry to hear that you’re currently going through a relapse, hopefully it will be short lived and that you’re being treated to take the edge of it. I’m also so pleased that you were able to draw comfort from my video, in the knowing that you no longer feel alone with this worrying symptom. Educating loved ones, friends and colleagues is very challenging!! It doesn’t take just months, it’s years! The problem being is this condition is hidden from the outside, to others you “look” perfectly fine, but if you’re anything like me .. you have pain of some degree every day. For me, I’m in pretty much severe pain 24/7. If ever you need to talk, you know where to find me. All the best - Neil.

[@vanessaallen8758]

I haven't been diagnosed yet but I have a lot of MS symptoms. I've most definitely had what you described, your video is enlightening because up to now I haven't been able to get it figured out, and it is frightening. Also, I'm not on any of the meds you mentioned, so it might not be the meds doing it to you. Hang in there.

[@NeilBradleyMS]

Hi There, thanks for your message. I no longer suffer with this breathing symptom as it was quite some time ago now. But yes, very frightening indeed. I’m sorry to hear you’re also having to deal with this and no doubt many other horrible symptoms. I’m not sure if it was the meds because since then I’ve taken the same medicine but without the breathing symptoms. Take care, and you hang in there also. 🙏

[@newjersey5100]

Hi Neil, I also have this at a low level constantly but it becomes worse when I have the tight banding in my chest. I have very poor trunk control and ataxia. My breathing has most definitely become shallow, my chest hardly rises anymore and my voice raspy and quiet, it’s a real strain to talk and hold a conversation. I’ve been too scared to fall asleep convinced the breathing will just stop and I’ll die. It’s very frightening. I’m so quiet and feel like half the person I was. I don’t take any drugs at all, except CBD oil and eat vegan, gluten free diet. I was diagnosed in December 2017, misdiagnosed 20 yrs+ . I practice breathing exercises and meditation to stop the panic lack of breath causes. Hope sleep returns to you peacefully 🙏🏻. Thank you for your videos. 🤗. P.S. haven’t seen my Neuro since my diagnosis so he doesn’t know my symptoms, trying to ‘cure’ myself and failing miserably! 😩

[@NeilBradleyMS]

Bless you.. the slow breathing and the feeling like it’s going to stop breathing is very real isn’t it. In fact, I’m sat in my favourite spot right now whilst I type this message to you on my phone, and I’ve just been falling asleep, but cannot because it’s happening again. As I’m drifting off I’m brought back because I become breathless. It’s horrible. I’m sorry to hear that it’s taken such a long time to get your diagnosis, it’s just so wrong. I’ve been trying different strengths of CBD but without success, I recently ordered from the States 1500mg strength so if I don’t see any significant results this time round I’m going abandon it. I do know though that it’s been very beneficial for a lot of people, just not for me so far.

[@newjersey5100]

Hi Neil, I’ve only just started 1000mg CBD oil from Hemp.je and I will let you know what results I start noticing. Remember, you are not alone in this! 🙏🏻🤗

[@Orthodox.777]

Oh my God i feel you...i feel the same i'm scared of sleep when i have breathing difficulties at nights.. God Jesus Christ bless you my sweet soul..

[@danielhernandez-fo3mj]

so crazy to come across this .... iv been having this happen for over a year now off and on and yeah it will jolt me awake and i feel like I'm having to forcefully remind myself to take the breath in ..... i then become panicked and feel like ei have to walk around to get me feeling like my breathing is back to doing it normally ...... sad thing is lately i feel like I'm having the same struggle almost all day i just feel like its hard to breath in or out ( no copd and bronceo screening came back in normal level) but its been driving me nuts just developed a lison on the c spine around the time it started havppning daily .... but nero was unsure of it as an ms thing ... crazy to hear someone discibe the going to bed thing so well ..... i thought i was going crazy

[@NeilBradleyMS]

You're not going crazy, I can usure you of that.. it's a very real thing but I doubt very much the Doctors would even acknowledge it. I no longer have this problem thankfully, but at the time I discovered it was a side effect to medication I was taking, so you may possibly want to look out for something similar. I can also relate you having to walk round to convince yourself your breathing is back to normal. Scary isn't it!

[@danielhernandez-fo3mj]

@Neil Bradley MS yea pretty scary do you remember what med you were taking lol I'm taking a few that could be or a combo but not really an option to stop cuz they help so much ...

[@NeilBradleyMS]

At the time I was taking Morphine which is a very strong and potent pain killer. When I stopped taking it, the weird sleeping phenomenon seemed to stop. This was quite a number of years ago now though. I am now, taking Morphine (it’s proper name is OraMorph) once again, but no longer have anything like those symptoms we’ve been talking about. It might not have been the morphine causing it. Best thing to do is keep a diary of symptoms, medication your currently taking, that sort of thing. And, see if you spot some kind of pattern to when it happens. That’s what I do myself with different things, and it’s often surprising when you look back over time how something might stand out.

[@RobdeKlerk-qg6lc]

Same here ffs..

[@chucktrivette5723]

I have the ms hug thing going on but I also have the exact same breathing sensation that your describing. Started 2 nights ago with led me to search out videos like yours and your describing it perfectly. I'm actually in the hospital waiting for the test that looks for blockage in the heart. Now I'm thinking this difficulty breathing may have caused my heart issue. I also did the at home sleep apnea 2 nights ago, the night before I started having chest pains. Thanks for sharing.

[@NeilBradleyMS]

Hey there, thanks for your message. I hope your tests go well and they discover what is causing your breathing difficulties. I no longer get this strange breathing phenomenon as I describe in the video. I’m not really sure what caused it, but at the time it was very really and extremely disturbing. Take care.

[@AJHR77]

I take amitriptyline I have not experienced any breathing difficulties with it it just makes me very sleepy. However I have had some breathing difficulty since I have been diagnosed with MS and has made it quite difficult or scary enough for me to seek assistance at the local hospital. Of course that is of no help because they say it's just MS and send me home. It is very strange I have had the cardiologists look at my heart and all the chambers and my breathing and nothing turned up there. It's like taking your car to the auto shop and of course everything that you have described to them that is happening no longer is happening when you take it there for diagnosis and repair if that makes sense. Sending you some positive vibes!

[@NeilBradleyMS]

I see that you have the infamous "MS" label placed firmly on the front of your head, I have one of those as well Avril and it's most frustrating isn't it. I could have nose ache, and they'll say "That's the MS" .. it really winds me up and I'm sure that it does you also. I have also been prescribed Amitriptyline not only to help me with pain but also to help me sleep at night. But here's the thing, I find after taking this particular drug for a few days (10mg at night, only a small dose) my mobility starts to tumble quite significantly. Then when I stop taking it, I recover after a day or two. Do you have any kind of similar effect? I'm a bit miffed this drug has this kind of effect on me to be honest, because it works well with helping me sleep. I'm going to try it again soon.

[@AJHR77]

Neil Bradley Yes,everything is MS until I see the neurologist sees me and they say everything is not MS!! The doctors say we won't give you meds because It lowers your breathing such Bull. It helps me sleep and my migraine pains. Always a delight to hear from you,I hope you get some relief. I assume we have to go to other countries to get pain meds.

[@Orthodox.777]

Oh and sorry for my bad english cause this is not my main language..all i want to say is that.i understand you..i feel like I'm talking right now..i feel you.. God Jesus bless you always ...idk if you believe on Him but i really want to wish for you to get over this problem cause.... it's scary

[@NeilBradleyMS]

Thank you very much, I very much appreciate your kind thoughts. I hope also that you're able to recover from this breathing issue. I have put a more detailed reply on your other comment which, I hope you're able to read. And by the way, I think your English is excellent. Best to you - Neil.

[@Orthodox.777]

@@NeilBradleyMS ahh you are so kind! Thank you my good man i hope we get over this scary breathing issue i red your breathing problems on comments were caused by some medecines you got I'm glad you're now getting over it ..mine is caused by the multiple sclerosis and that's why i don't know how to help it 😅 i wish for you the best!

[@rikke3101]

Hi Neil. First I have to say it upsets me so much, when doctors ascribe every single symptom to the ms. It´s so damn frustrating. And your facial expression told me that you feel the same. Honestly I was worried the loss of bladder control *could* have something to do with your back problems. Did they even care to look into that or did they just yell "MS!"? Okay, I´ll stop complaining now. I am just glad the bladder problems were solved back then (thanks to yourself!). And also very glad to see that the breathing issues seem to have disappeared too. That must have been so scary. Very claustrophobic, I imagine! As far as the heat goes, it sounds like you´re about as ready for fall as I am. Hopefully it will cool down in the UK very soon. We´re looking at a couple of days with 30+C next week, but after that it should get more tolerable. Take it easy!

[@NeilBradleyMS]

Hi Rikke, I’ve got this big label on my head now that says, “MS” .. I could have nose ache, “that will be the MS!” I get sick and tired of it. Yes everything is put down to those infamous two letters I feel. The high dose of Pregabalin I was taking was relaxing my bladder muscles so much that they were no longer functioning properly. I mentioned it to the hospital, “yes that’s the MS” .. was it hell. I slowly reduced the dose of medication and the problem went away and never returned. Neil was right!! The breathing issue keeps coming and going but I’m convinced it could be medication related, possibly the Oramorph which I’m taking more regularly now for pain. I’m going to experiment a bit. Yep, it’s been very warm.. another day of high temps tomorrow then it’s cooling down for quite some time. Hope all is well with you Rikke, as always it’s lovely to hear from you. You take it easy too😊

[@rikke3101]

Sounds like a good idea experimenting to see what makes the breathing issues come and go. I think you have proven several times that you know your own body best. And you´re the only one who can *feel* it.

[@KB-xp5cy]

Thank you so much for posting this, Neil. I’ve experienced a few times and have also woken up from a dreaming state feeling like I am suffocating. It is a very scary sensation. To me, it seems to happen often if I become overheated at night, and I often better once I cool down. However other times it does seem to occur during that quasi-dreamlike state before being fully asleep. I have not been diagnosed nor am I on any medication for it, but am currently seeing a neurologist because my breathing and swallowing issues (waking symptoms) seem to have worsened recently. I hope you have found some relief from your symptoms.

[@NeilBradleyMS]

Hello Kristin, and thank you for your message. Hmm, very interesting indeed. The “quasi-dreamlike” state is actually called “Hypnogogic state”😊 but I know what you mean. This is also the state it would happen to me. I say would, because it’s stopped now some time ago. I discovered it was pain medication causing the issue, particularly Oramorph. I’ve since stopped taking it, and the horrible issue has gone away. However, it’s interesting to note when you say it seems to happen when you become over heated. There is a Neurological condition which I mention a lot in my videos called “Uhthoff’s Phenomenon”, I suffer with this a lot and have to make sure I keep cool as much as possible. I’ve got a least three videos on this on my channel, you may find them interesting. For me though, when I heat up my mobility worsens, and more recently my blurry eye does as well. I hope you find the answer to this problem Kristin, I’d be very interested to know how you Neurologist visit goes. Best of luck.

[@ilmcr07]

Hey Neil! Stay cool and continue to document those symptoms. You're right with all the meds the Dr prescribes it may be an issue they haven't discovered yet...scary. Say hi to Theresa for me and be well my friend!

[@NeilBradleyMS]

Hey there, yes indeed I will say Hi to my good wife for you. She reads all of the comments as well. Yes I think it’s important to document the symptoms as they arise etc. I do think meds has something to do with it so I’m currently in the process of elimination. Good to hear from you.

[@Orthodox.777]

Yes they haven't discover it yet...to me they say it's not MS symptom..im about to get insane

[@julies7028]

Hi Neil. I have just come across your interesting video after researching my many issues. I've been researching for the past 18 months and over the past year I have been concerned about the same issue as you (although reading further down I now know you are cured of this through coming off your medication). I still wanted to comment, partly due to other people reading the comments who may be in similar situation. It happens with me occasionally whilst asleep in bed at night laying down and if I am taking a nap in the day sat upright (that's how tired I am sometimes). I jolt awake and my chest feels slightly tight and it feels like my throat has closed up (lasts for approx 5 seconds but it's scary). I haven't been diagnosed with MS. I was diagnosed with silent reflux 18 months ago but over the phone (my symptoms were occasional hiccups and belching, difficulty swallowing/food slower to go down so taking ages to eat), fatigue (sleeping most afternoons) and slight breathing problems in the shower which was the first symptom I noticed up to a year before the other symptoms. I had also woken up a few times gasping for breath and coughing which is a different sensation to what I and you have described which came later. Since then my breathing has got worse (like I need more air and can't take a full yawn many times and breathing seems unnatural sometimes like I am pausing breathing during waking hours (very mild). This is almost daily and some days are worse than others. For the past 4 months I now get short of breath DURING eating which is really worrying me. I've had endoscopy and seen ENT (camera down throat), blood tests and CT scan of tummy. My oxygen saturation and blood pressure are fine and had a chest Xray. I was tested positive for H Pylori bacteria 8 months after I first rang the Dr and I'm aware that can cause many issues but even after eradication I still have the same issues. My iron levels are low but still in the normal range so I'm not sure if that's anything to do with the breathing issues as H Pylori can cause depletion in iron and I tried PPIs (acid reducing medicine) for 2 months and my iron levels dropped drastically. I have so many other symptoms such as mild pins and needles in feet sometimes, occasional dizziness when I stand up from crouched position, aching legs that are so uncomfortable (although that could be arthritis). Everything I research can have so many similar symptoms and there can be an association between them (eg apnea and asthma, apnea andreflux) . Drs aren't very helpful (have contacted them at least 7 times now) and one even made fun when I explained about my suspected apnea, stating 'we all can wake up with a startle if we think we can hear something and hold our breath). All the Drs keep telling me to go on PPIs despite me telling them I tried them and they didn't work, but there is no other solution or explanation. I mentioned the sleep apnea on my first Dr appointment and several times since and one of the Drs has only just referred me to a sleep clinic. I don't think the stopping breathing can be caused by reflux, particularly when sleeping upright. I'm 55 and have never had any health issues. Sorry, this has turned out quite long.

[@NeilBradleyMS]

Hi Julie, please no apologies for how long your message is .. I and no doubt several other of my subscribers will find your experience interesting and be able to relate to it. I really appreciate you sharing, thank you. I recorded this video quite some time ago now, but I do recall this breathing issue quite vividly. I did think it was to do with some strong pain medication I was on called "Oramorph" (liquid morphine) but recently I'm back on it for pain and I'm no longer having those same breathing symptoms which is interesting. The issue I was having was definitely not Sleep Apnea whereby you can actually stop breathing when asleep by means of the throat closing up (and I've never had stomach acid/reflux issues). For me, it was just at the point of 'dropping off' and falling asleep I felt like I'd got to consciously re-take over my breathing or else I'd stop !!. Effectively my sub-conscious (which should breath for me without my thinking) decides to pack up! A very strange and worrying experience which, I do still in fact get from time to time but not as often as when I made this video. There are so many Dr's that simply "don't know" or aren't experienced enough in a particular area. However, I'm pleased to hear you've been referred to the sleep clinic, this sounds really positive and a good step forward to getting to the bottom of the problem. All the best - Neil.

[@julies7028]

@@NeilBradleyMS Thank you for taking the time to reply Neil. Sometimes I haven't quite dropped off and it happens but more when I'm asleep. I wish you well.

[@Princesscarlie]

I was given nortryptline..and yes I bet its amitryptyline yep....it has some weird effects yet it helps

[@Princesscarlie]

oh and no sun when your on it,,so yes heat plus drug

[@Princesscarlie]

I actually opened my pill and took only half..

[@NeilBradleyMS]

Hi Carlie, yes I’m thinking it could be drug related. But it’s so scary when it happens. Nice to hear from you, I hope you’re keeping well.

[@plsnoteli]

I feel the sensation of needing oxygen/not getting enough most of the time. I need to manually control my breathing a lot.

[@NeilBradleyMS]

Yes, having to manually control your breathing is definitely how I would’ve described it.

[@glenwestphal7510]

Hey Mr Neil, Glen here how you feeling today, I hope much better. As you are reading these testamonials of other MS sufferers I am surprised at how common this is to so many people. I have had this issue for about 4 years now, doctors thought it was sleep apnea, turned out after 3 different test they couldn't tell, imwould be sound asleep in as little as 10 min . and waking up not just no breathing but actually coughing and gasping for air and threw the very violent grasping for air struggling very hard to actually get the air into my lungs between the actual chocking !! I have no answers for you again mine started lightly and I got it like it is now. Happens to me at least 2 to 3 times a month and then several months without it, why now I believe it to be MS related. Just like my neck pain starting outta nowhere and then moved to my throat and closing off were I had to go to the ER to get help and the Doctor called my MS specialist and she ordered a high dose of Prednisone and said if I'm able to swollow in 15 mim. Thrn it's the MS and it was i got to ho jome and the next day was like it never happened. But yet, other things have happened and figured it out that mot everything is MS related, makes life very interesting. We just need to inform others compare notes and keep trucking and hopefully what you are doing will help doctors figure out things as well as all of us, so thank you again, Glen in the USA

[@NeilBradleyMS]

Hi Glen, it’s all a bit of a mystery isn’t it. What you describe sounds absolutely terrible and scary. It’s quite random when it happens to me, after shooting the video I went several days without the problem. Then out of nowhere it’s started happening again this last few days. I don’t think it’s MS related, I think it could be more medication related. I’m going to have to do a process of elimination I think. Good to hear from you, as always. Take care.

[@thekingbee100]

Hello Neil. You could have a "Nocturnal Polysomnography" (sleep study) test done. I know that my Doc always wants me to have one, due to the prevalence of the changes of sleep patterns as we age. Welcome to Middle Age, Old Chap...I think you're spot on about the meds, but it could be a combination of things, medications certainly being one of them.

[@NeilBradleyMS]

Hi John, this is the first time this strange sleep phenomenon has happened and I’m watching out for it again. Very occasionally I get a hint of it happening again, but not like when I recorded the video. I’ll consider the option of a sleep study if it starts to get too bad or much more frequent. I like to try and eliminate the cause (suspect medication) myself first. Hey John, I’ve been in that middle age club for quite some time now, in fact that pretty much when everything went wrong with my body! Take care.

[@thekingbee100]

I understand completely Neil. When I'm given a new medication, or and adjustment of my current medication dose, I take it in the morning and check my blood pressure, heart beat per minute and Oxygen saturation levels for a few days. Those O2 Sat devices are pretty neat.; a little device that goes on the tip of the finger for about 10 seconds, or less.

[@andreawheatley5528]

Hi Neil, sorry to hear you are having such a scare, but a sleep study couldn't hurt. I do have times I wake myself up, from my breathing, sometimes it's a MS Hug, other times, I have no idea. I had surgery on my Carotid Artery in late January, and the nurse came in the room and called my name, the bed had sensors all over it, and apparently, my alarm went off, because I had stopped breathing. I always keep you in my prayers, and I'm going to make a new video, and more videos on MS. I learn from yours, hang in there friend, and fight the good fight. XoXo's

[@NeilBradleyMS]

Hi Andrea, for the time being it’s not happened again so I’m continuing to monitor it to try and figure out the cause. If it becomes a regular thing I might consider a sleep study. I remember when you had your surgery, I recall it was a no brainier otherwise you could have a stroke. I look forward to seeing another video Andrea, I have my notifications set on your channel to let me know. Take care of yourself.

[@andreawheatley5528]

Thank you Neil, you could be right with the medications, some really do a number on us. Good memory Neil, it is healing up nicely. I seem to have more endurance, since that surgery, but I still have my bad days. I hope you got a good nights rest last night, and I will get a video out soon. Happy Saturday.

[@sue4531]

Hi Neil, wow I can sleep sitting up downstairs like you but not in bed its so weird isnt it, the breathing thing ive had for about 20 yrs id just stop breathing at any time of day whatever im doing but I just thought it was normal for me but apparently people with Ms get it its the same when I cant swallow, that can get scary, Ive been terrible with the heat, my legs feel heavy im shaky ive got reflux back really badly but I dunno why so ive been feeling sick alot and my bladder playing up and ive lost sensation in various parts of my body, my memory has been real bad ive even missed appointments, im putting it down to heat 🔥 I was even ill on my Birthday & still dont feel right I was swaying all over the place falling into everything, its been crap! Rebif has got me up the wall after injection my leg comes up like I have an egg under my skin and it burns for days, just fedup atm. You look after yourself & love to Teresa 💜💜☺

[@NeilBradleyMS]

Hi Sue, nice to hear from you. When my back is really bad I find lying in bed extremely uncomfortable, so sleeping in the chair is always a good option for me. Lying flat seems to make my lower back more painful, then everything else follows. That’s very interesting to learn ya have similar issues breathing. I forgot to mention in the video that the breathless problem only seems to happen when sleeping sitting up. Very strange. Ahh Sue, poor you.. I do think the heat possibly has a lot to do with the raise in symptoms your experiencing at the moment. I much prefer the cooler weather, as I’m sure that you probably do also. Much easier to put an extra jumper on if you’re cold, or turn the heating up. I feel for you Sue, when I used to inject Copaxone, I had plenty of those golf ball size lumps under the skin, that itch like crazy and drive you insane. I couldn’t cope with it any longer and packed it it. Take care Sue, I hope things pick up for you soon. Neil & Tree. Xx

[@dpaudj]

i do this when im concentrating on something, like i forget to breath in!

[@NeilBradleyMS]

Hello Deborah, I know what you mean! I believe this problem was caused by pain killing medication called "Oramorph" Oral Morphine basically. A lot of these medications can cause respiratory issues, after a while of stopping taking it the problem went away, and hasn't returned. I hope you're keeping well, and thank you for your message. Best to you - Neil.

[@crystalakers8324]

Mine similar I also a lot of times feels like as soon as if falll a sleep but like I catching my self a falling off some thing then wake up but no it feels like spine or a muscle sliding off too at the same time .specially if I'm lying g on my side .also first start of relapsing symptom I also have there are time it feel like a light switch being turn of for like split second and like in that split second of of my breathing atop like engines bending cut off almost like switch icouttng whole body every thing at the split second feelike someone turning off light and it never when I'm a wake it like I'm a computer I and some one pulled th plug all system shock then it like they plug it back on turn it to reload and ideal like in that split second on off so fast like it stumps you beyond your core and al most like I died for spilt seccond and a scary and heart jolt rapidly an I breathing heavy like I just got shock back to life also all a 5he same time I've had the happen off n on for while I think mine happen s when I get ready to go I to relapse and through out the intire relapse they haven't happened here lately but thank God I dont like that feeling at all scary

[@NeilBradleyMS]

Hi Crystal, thank you for writing and letting me know about your breathing experience, it sounds just horrendous! Fortunately this weird phenomenon has completely stopped for me, I’m pretty sure it was a side effect of Oramorph which is a pain killing drug I used to take. I’ve not taken this now for months. Take care.

[@Orthodox.777]

What??? You said you find yourself on your sleep like you are falling from something??? Yeah me too! I sometimes not always find myself as I'm sleeping to fall from something and then i wake up ..

[@OckGal]

That sounds scary! Does sound like it could be the meds since they mess with stuff. I imagine the fact that it's happening will induce anxiety and make it even worse! I was having issues just making it to the bathroom (since you mentioned) but luckily it hasn't been so bad. I have a bad habit of waiting til the last minute to go downstairs (idiot me). Odd that it went away after being a problem, but I won't complain about that! Anyway, hope you figure out the reason and it subsides.

[@OckGal]

Oh I just saw the text at the end saying it cleared itself up. Yay!

[@NeilBradleyMS]

Thanks Lisa, it’s kind of cleared up although I keep getting ‘glimpses’ of it happening again but nothing like when I recorded the video. I’m going to continue to monitor it.

[@willowithywindle]

Not a lot of fun Neil. I have times when I have to go on what I call manual breathing because the natural rhythm is not working. I am used to being woken up at times because I am not breathing properly too. This is the neuro part of ME I think though muscle weakness also plays into it. It sounds similar to what your MS is doing. No medical person shows any interest in it nor can say what is happening. If they can't 'fix' it they are not interested. This happens to me even when I am not an any medication. I know that the anxiety that develops round it is important to manage and if I feel I am getting flustered and can't deal with it I take half a valium as I believe this will help me chill out. It may only be acting as a placebo but I don't care. AGENCY is so very important. We panic when we feel are losing it. And we start squirting adrenaline in consequence which further exacerbates what ever is going on. This would be so much easier if we had a proper health care/support system. If you could ring someone in the middle of the night or when ever and say I am feeling vulnerable and somewhat afraid and you were listened to and was reassured you/we would fare so much better. But we are in uncharted waters without a map and our survival is on the line. No wonder we are suffering stress on top of what ever is going on. We are left to ourselves with nothing but trial and error to work with and with your MS things are changing all the time too. It is like that with ME. There is no base line to give a sense of normality or stability and we are always working in the shadows if not the dark. Not easy and sometimes terribly hard. .....feeling with you. 🌷

[@NeilBradleyMS]

Hi Willow, I can relate to the manual breathing mode, I experienced this when it first started happening a few weeks ago, it was quite worrying. I don’t think it’s the MS, I feel medication has more to do with it and I’m currently in the process of elimination. Yes the anxiety which developed as a result was quite a big deal. I forgot to mention in the video that this only happens to me when I’m sitting up trying to sleep. So far lying in bed I’ve been fine. If I mention this to a Dr I just think I’d get a blank look, I’m pretty sure they wouldn’t know where to start. So as you say, this is where the uncharted waters comes in and we’re left to try and figure it out alone. I accept that science doesn’t always have the answers. As always, lovely to hear for you and I hope this message finds you well. Take care - Neil.

[@Orthodox.777]

Did you go to check it? To get answers of whats wrong with your breathing problems ..ik its from Multiple sclerosis cause i have it too and i really feel exact the same ..my mother says i have to check it on a doctor who's for breathing problems

[@dean200993]

I get this too, Neil.

[@NeilBradleyMS]

It was very scary at the time Dean, turned out it was medication causing the problem. Soon as I stopped the medication (Oramorph) the issue went away.

[@bornfree7788]

Thanks for your breathing experience. I have had almost all ms symptoms I have heard of. Not diagnosed though. Symptoms last for a few months then something else starts. Fallen over hundreds of times in last 4 years. I drive semis but when I trip over my feet in the service station and am on the floor it looks a bit bad. 3 weeks ago my breathing stopped working properly and I am tortured day and night trying to open my lungs to breath. I get so angry with frustration as I become oxygen starved and heave and struggle for many minutes to get a quick breath in a second when they open but then close again. I am greatly distressed by this and feel I am dyeing. I get light headed when trying hard to open lungs and this is a trouble when driving. If I do have ms it could be a lesion on my spine. I don’t know what to do. My Dr did a lung function test which showed my lungs are 88 years old but I’m 58. He wants me to use an inhaler that gives a dose of some drug for a month but I haven’t got it yet. I am interested if what I am suffering is an ms symptom as I have never smoked and a CT scan came back clear. Thanks.

[@NeilBradleyMS]

Hey there, and thank you for your comment. Your breathing difficulties sounds just awful and I’m so sorry you’re having to deal with this. It definitely sounds like you’ve got something neurological going on, especially if you keep falling for no apparent reason. What is your balance like? Also, it seems strange that you say your breathing stopped functioning properly about three weeks ago.. was this like a flick of a switch or do you feel it’s been gradually coming on. I expect the inhaler the Dr has prescribed would be to help open up your lungs to help you breath and get more oxygen in. But as you say you feel you’ve got lots of MS type symptoms, perhaps your Dr needs to refer you for more tests at the hospital.

[@ronwyn70]

Hi Neil just wanted to ask have you found out why you are having the stop breathing episodes when falling asleep , I have for the past 2 months been having the same thing happen to me only as I’m about to fall asleep and it’s starting to concern me. I just did the sleep apnea test last week and waiting on results but I don’t feel it is as it’s not

[@NeilBradleyMS]

Hi Ronwyn, and thanks for your message. I can very much understand your concern with this, it's just such a horrible sensation isn't it. It would happen to me as I was about to "nod off" on the settee, never in bed. It would fee like I would have to consciously re-take over my breathing. The only thing I put it down to at the time was medication, I was taking a pain killing drug called "Oramorph" which is quite strong and can effect on the respiratory system. I decided to stop taking it for a while and the strange breathing problem went away. This video is a couple of years old now, and I've recently been taking Oramorph once again but I've not experience the same breathing issues. So I'm really not sure now if it was the drug or not you see, bit of a mystery. If you are taking any medication, it might be an idea to look at any of the side effects for clues. I'd be interested to know if you get to the bottom of the problem, good luck and all the best - Neil.

[@dominickguerra189]

I am not diagnosed with ms yet but I am currently seeing my GP for many symptoms of ms. I just had this SAME exact symptom with the breathing issue happen to me a couple months ago. It went away after a couple weeks but now it's coming back. Sleeping pills do help with this issue. Do u use any sleeping pills? It also has been bothering me constantly during the day where I need to concentrate on my breathing instead of it being passive like it used to be! So annoying

[@NeilBradleyMS]

Hi Dominick, no I don’t use sleeping pills. This symptom has also gone away for me. The word passive describes it perfectly, when I was trying to sleep my breathing should be passive but it wasn’t, it became a conscious effort. I believe I know what was causing it though, at the time I was taking Oramorph for pain and I’m convinced it was a side effect. Because, once I’d stopped taking it the problem has gone away. I’ve not taken it since. You shouldn’t have to be concentrating on your breathing, as you say it should be passive. Have you considered it could be a side effect to medication your on. Might be worth looking them up. Take care.

[@Orthodox.777]

No sleeping pills are not good they are like miorel to relax your nerves when you have spasticity . If i take sleeping pills i think my problem will get worse especially breathing problems cause ... breathing problems coming from multiple sclerosis which it slows down nerves's activity and that's why we have disabilities So sleeping pills will destroy someone with multiple sclerosis that has breathing problems

[@Brandi.65]

I have this and had to go on a Cpap for sleep apnea.

[@NeilBradleyMS]

I’m pretty sure for me it’s not sleep apnea because it happens before I’ve properly entered sleep. I can feel it coming on as I’m drifting off sort of thing.

[@halimamuslimah]

Sleep apnea. They've got CPAP machines for that. They're not comfortable at all.

[@NeilBradleyMS]

Hello again Elizabeth, I'm confident it's not sleep Apnea because once I'm actually asleep I'm ok and my breathing is fine. It's the process of actually falling asleep only when I'm sitting up on the settee downstairs, it happened to me again today. It's so strange, when I'm lying in bed it doesn't happen.

[@karenpny]

Scary! Please get it checked out Neil.

[@NeilBradleyMS]

Thanks Karen, yeah it is fairly unsettling but it does come and go, and I forgot to mention this in the video but it only occurs when I’m falling asleep sat up, as opposed to lying down in bed. I’ll continue to monitor it. I hope all is well with yourself.

[@BarbdWireNRoses1]

I hope you can figure out if it's the meds or something else.. With chronic illness it seems if its not one thing it's another! I have definitely seen that for me, poor and little sleep makes everything worse. Take care

[@NeilBradleyMS]

Yep, I use that expression a lot “if it’s not one thing, it’s another!” .. that’s how life feels now, I’m in total agreement with you. And yes you’re also right about the sleep, poor sleep night after night just worsens everything doesn’t it. Occasionally I’ll get a good night’s sleep and I feel amazing, mentally recharged. This highlights how poor my sleep usually is though. You take care also, good to hear from you.

[@Orthodox.777]

But what if you can't sleep?.. oh my god

[@gabrielle7255]

Hi Neil, have you ever tried to change for a special diet like the Whals protocol? I do only half of it, than no coffee and no alcohol and feel great!

[@NeilBradleyMS]

Hi Gabriel, I haven’t really. I don’t drink much alcohol, I do like the odd glass of port but it’s definitely not every night, just when I fancy it really. I switched to decaf coffee last year for a period of about three months, and didn’t really notice anything significant, so switched back to normal again. If I’m honest, I don’t have a lot of faith in these special diets, but that is not to say they don’t work for other people. I just did a quick Google on the Whals diet and it looks like I’m already doing a lot of the do’s and dont’s. I’d do eat a lot of vegetables, some meat (mainly chicken) and fish. My wife is diabetic so we avoid sugar and treat it like it’s poisen. As for diary, pretty much just a splash of milk in coffee. My diet is already very healthy, we don’t have takeaways.. well on occasion but can’t remember the last time so it’s a very long time ago. Thank you Gabriel for raising this point and I’m thrilled that you’re feeling better by following some of the points in the protocol. Perhaps over time if you introduced a fraction more of the diet it will benefit you even more. Good luck! All the best - Neil.

[@michellefry599]

Hi again, could this be a form of sleep apnea ? As suggested a sleep study sounds like a great plan .... I snore according to my hubby Nick lol but it’s a throat snore, so I may put in for a sleep study too. Do you ever have a similar feeling with swallowing, as if you forget to swallow, liquid and solids. I am giggling as I wrote all the above before you said you didn’t think it was sleep apnea lol Still worth looking into though. Stay cool Neil xx

[@NeilBradleyMS]

Hi Michelle, pretty sure it’s not sleep Apnea as I believe that is something that happens whilst you’re actually sleeping. Where as this is during the process of trying to fall asleep if you see what I mean. Something I meant to say in the video but forgot, strangely this only seems to happen whilst I’m sat up sleeping as opposed to lying down in bed. I just can’t work it out. No, I never have difficulty swallowing and I do know a lot of people with MS have this problem. Take care Michelle, and thanks for the message.

[@NeilBradleyMS]

Hi there.. this has stopped happening to me now but it was horrible at the time. I’m sure it was due to a pain medication I was taking a the time called Oromorph. I’ve not taken this now for months, and the breathing problems have ceased.

[@NeilBradleyMS]

Yes it’s possible, have you been diagnosed with MS?

[@trevorkenward7661]

I have recently started gasping myself awake when in the half sleep mode. It’s like i am re starting my breathing by gasping for air. Haven’t had this before but now it is quite regular. Anyone else had the gasping effect?

[@NeilBradleyMS]

Hi Trev, that’s pretty much what’s happening to me. Even this last day or so, I’m having a “nod” on the settee and can’t drop off as my breathing seems to slow/stop. The sensation then brings me round. It’s horrible.

[@trevorkenward7661]

Neil Bradley Do you get this gasp that is a bit like coming up for air from under water. I wonder if it's the throat muscle relaxing. Isn't it odd how many symptoms we share...

[@NeilBradleyMS]

Flood & Fidler It feels a little bit like that maybe, by it feels more like my breathing just starts to go so slow it’s about to stop and I have to consciously take over.

[@trevorkenward7661]

Neil Bradley oh OK, a bit different then. You should go to GP just to be safe.

[@NeilBradleyMS]

Hmm, whilst it quite disturbing I don’t feel it warrants a visit to my GP just yet. I don’t actually feel that worried, if on the other hand it was happening whilst lying in bed, that would be a different matter. It only seems to happen whilst sitting up. I’ll continue to monitor. Cheers.

[@RobdeKlerk-qg6lc]

Exactly the same here ffs..

[@NeilBradleyMS]

Yes, it really is isn’t it. Thoughts are with you. 🙏

[@RobdeKlerk-qg6lc]

Thanks....how are you doing?

[@NeilBradleyMS]

@RobdeKlerk-qg6lc Just keep pushing on, since this particular video my health has continued to deteriorate unfortunately, worsening mobility and pain. I try not to let it win though, i think it’s really important to stay as busy and as active as is possible. Nevertheless, that said, it is a significant daily battle. How about yourself ?

[@RobdeKlerk-qg6lc]

@NeilBradleyMS Sorry to hear..the breathing as you said is very disturbing..I don't inhale automatically anymore at the moment...by the way , do you still have your breathing to stop...

[@vvdv3444]

happened to me got better please detox

[@NeilBradleyMS]

Yeah, it’s only happened that way one time so far, and I do keep getting a small hint of it happening again, but nothing like when I made the video. Thanks. 👍

[@vvdv3444]

look into MS and mercury

[@zan1158]

Did it only happen when you slept sitting up? Hope this is only a temporary nuisance. Be Well.

[@NeilBradleyMS]

Hi Zan, yes that’s another weird thing.. only when I’m snoozing sitting up in the chair. It’s never an issue when I go to bed, I forgot to mention that rather important fact in the video.

[@Orthodox.777]

I have the same problem and my mom says i have to go to doctor... but idk. Why? i have multiple sclerosis.. multiple sclerosis brings many problems but idk what will change if i go to doctor for breathing difficulties? Tell me my good man... I'm afraid cause i sleepp at nights full of fear when i have breathing problems

[@NeilBradleyMS]

Hello Christy, and thank you for your message. This video was a little while ago now but I can still remember this problem very clearly. I also discovered what was causing it. I was taking some quite strong pain killing medication called "Oromorph" basically liquid morphine, I was also taking it regularly (every day). One day I decided to stop, and after a while the Breathing Problem whilst dropping off to sleep subsided and went away and has never returned since (I don't take Oromorph now). A lot of medications can cause side effects, and so it important to do a process of elimination sometimes to try and figure out which was is causing the problems. You could discuss your list of medication with your Dr, he/she is the one most qualified to know which medication could possibly be causing this horrible side effect. It then may be reduced slightly to see if the breathing issue improves etc. If the breathing issue is a relatively new thing, you could also look back on your medication to see if you've started anything new recently that could be causing it, this is what I always do when I get a new side effect. I hope this helps you. Best regards - Neil.

[@Orthodox.777]

@@NeilBradleyMS thank you so much for answer me to both of my comments cause i forgot to write you some important things .. i'm not on any medication..thats why i'm worried of it because it's symptom of Ms and i don't know what to do with it cause if it was medication i would be glad cause i would stop it right away ...but this is not the cause , my neurologist's doctor helpers ..(my doctor has the same disease thats why he is not coming to examine me) they say breathing problems are not symptom of Ms but i learned by many patients that it is a symptom of Ms . Yesterday i slept well before i sleep i had breathing problems again but i prayed to wake up the next morning, and i fell asleep ..(i can't stay awake at nights anymore i'm really tired to stay awake like i did old days with Ms) sorry this is a long comment i just wanted to explain.. best regards to you again

[@NeilBradleyMS]

No problem about the long comment, it's absolutely fine. Ahh I see, you're not on any medication so I understand why you may think this is the MS. As a rule I've not heard (or read) that MS causes breathing difficulties, it can however cause swallowing difficulties, which is kind of the closest think. Can you describe the breathing difficulties? Do you experience this only when you're falling asleep, or do you have these breathing issues during waking hours of the day also?

[@Orthodox.777]

@@NeilBradleyMS i have it sometimes it happens on sleep t , when i relax when i sit , or when i'm standing up it's not that everyday but when this happens it's really hard for me.. as i learned about Ms is a disease that attacks to our nerves , and our nerves controll everything our organisation does like: hand moves ,leg moves ,head moves, heart activity, bones, blander activity , stomach, breathing activity, optic activity, etch. If those nerves get attacked everything is connected so there will be damage to our organisation For example we have small nerves on swallowing so as Ms is attacking, those nerves slow down their activity and its hard to swallow food or drink Thats what happens with everything else our body..here i'll send you a video kzbin.info/www/bejne/pHOZqnlsh8mrrMU neurologists never explained us what exactly wrongs with Ms inside us...all i know of them is they don't admit all Ms symptoms and I don't know the reason ..thank you again for your time

[@mindywebb5462]

Happens to me every night...scary

[@NeilBradleyMS]

Really! Strangely, something I didn’t mention in the video was it doesn’t happened when I go to bed, ie lie down to go to sleep, only when I’m upright on the settee. But it’s not happened again for quite a few days so I’m monitoring it.

[@dominickguerra189]

Are u ever able to get any sleep?

[@NeilBradleyMS]

At this moment in time, I’m sleeping reasonably.. I’m not by any means sleeping as well as I should be but that is down to pain and discomfort as a rule. The breathing issue seems to have subsided as I believe this was a side effect to pain medication.