I suffer from intermittent periods of "air hunger" or shortness of breath when I am sleeping. It wakes me up suddenly and I feel like I am suffocating. The only thing that relieves it is literally getting up and about. I can't even lounge in a chair. I have to be up (vertical) to get the feeling of suffocation to go away. I have had my heart and lungs checked a few times as this only happens when I am lying down. I do not have shortness of breath during the day unless I had a particularly bad "episode" the night before.
So this happens for 5-10 nights in a row and then I get a break from it. This time it was 17 days without it (which kind of takes anxiety out as causation as I have been in an extremely stressful state for the last month and the shortness of breath just came back after 17 days.
When I first started my B12 hydroxy last August, the shortness of breath seemed to go away for a long time. I thought the B12 cured it. Now I am finding that the episodes are back. I did a shot this morning because the shortness of breath was back. The last shot was right after another bout of breathing problems while sleeping.
That was a lot of words to ask my question...last time I took a shot (3 weeks ago) it took 5 days for the shortness of breath while sleeping to go away and it did for 17 days. Could it be that the duration of action is that slow for me? I know many might say take shots more frequently but I still get very bad insomnia for a week with my shots so I hate to do that. Also could the B12 be causing this? Anyone think I can expect to just have to get through several days after each shot to take care of the problem? I have no idea what else is bringing this on for days at a time and then disappearing for a bit longer and then coming back...
Sorry if this is hard to follow. Waking up, feeling like you are suffocating, is one of the worst problems I cope with and it is exhausting.
Thanks for any thoughts...(btw, methylcobalamin was way too stimulating for me)
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I had an at home sleep apnea study. Sadly, I didn't sleep long enough stretches for them to get adequate data. I keep thinking that if this is sleep apnea, it would not force me to stay up for a couple hours before I start breathing normally enough to lay back down again.
I hear your reasoning and no, standard sleep apnoea wouldn't, but maybe something related might - a sort of nerve disruption response or something.
I know where you are coming from in trying to get to the true bottom of it and asking what is causing whatever it is.
I'm like you and care less about the diagnosis and more about what you need to do to stop it happening!
I was just thinking that I know the sleep clinic guys are often wonderful and I just wondered if they might be able to help you?
It might just be that a CPAP machine is your answer anyway - or at least until you can get to fix the root cause of the problem. I know they seem off-putting but in reality they are brilliant and when my husband had one it used to send me to sleep as well as him! 😃 Anything is better than suffering like you are at the moment, too!
Yes, Nackapan. I have tried all those things (extra pillow, raising head of bed, even sleeping on my left side) I just can't connect the dots. I guess I was asking if the full effects of the hydroxy shot could actually take several days to kick in (and thus stop the shortness of breath). Thanks for your thoughts. BTW, I read what you write all the time. I noticed you mentioned your daughter eats avocado every day but also that she follows low FODMAP. Avocadoes are considered high FODMAP. Wondering if I should try them...I am always looking for more foods to try and avocadoes would be great but I have been low FODMAP for quite some time.
I expect that although the B12 gets into the blood stream quickly, it might take several days for your cells, especially nerve cells, to repair. If it's something a bit more complicated so needs several sections of cells to be repaired together to stop the problem then it could easily explain the delay, the improvement and then the gradual decline again.
Totally agree with avoiding methylcobalamin. Methyl is essential if you need it but not good if you don't.
What about cyanocobalamin? There are several people like Clive who can't get on with hydroxocobalamin but do great with cyanocobalamin.
It might be doing a similar thing to what iron deficiency does - everything is linked so it might be that the B12 deficiency is stopping the iron working properly or it's acting on a similar nerve set.
Another suggestion is maybe using less B12 more often - so you can still get some sleep and cell repair? If only it could be that simple!
Can you try cyanocobalamin sublinguals between your hydroxocobalamin jabs maybe? To possibly get a smoother level?
I bought some cyanocobalamin sublinguals once and they were really nice. Didn't work a jot for me, sadly, and they were expensive as "sweets" but they tasted really good! 😃
I hope my suggestions aren't just annoying for you and you can get somewhere with this very soon.
Somehow I missed this, Denise, in the long (much appreciated) list of replies I got. I am intolerant of cyano. I had anaphylaxis to it once. It was in an infusion with other vitamins, but the doctor said it was likely the cyano causing the anaphylaxis, so I am hard-pressed to try it. Thank you for commenting on my question about the injection taking a few days to get into my cells. Yes, I have already reduced my dose to 500 mcg./3 weeks...I am just trying to see if B12 injection frequency/dose is at the root of this. I did not want to have a shot yesterday but since I started another bout of air hunger I did one. Work in progress. Thank you so much for your interest and help.
Ah 👀! Best avoid cyanocobalamin then! 🙄😂 Back to the drawing board!
I really hope today's shot doesn't keep you awake and does stop the suffocating.
Forgive me bombarding you with ideas without rereading your history. I'm a bit broken myself at the moment - but only because I've done too much work, which is great... and it means I've got a bit of time to try to help.
Vitamin D and magnesium are vital to combat insomnia. Vitamin D especially - a deficiency of it makes you desperately tired and unable to sleep. Magnesium helps muscles to relax.
As you put more B12 in, the processes of cell repair use up other vitamins and minerals so they in turn can get in short supply.
Can you increase your vitamin D (and possibly magnesium intake too, ideally through your diet) in line with doing a B12 jab?
Or does this make you think of anything else that you might need to increase to support your B12 activity within your body?
If you get a chance to let us know how you get on, I'd be fascinated to hear what you say.
Thanks, Nackapan. You have inspired me to at least try a small piece of avocado...all that nutrition and all those calories. Oh, how wonderful it would be if I tolerate them. I eat low FODMAP (watching serving sizes on higher FODMAP foods; like 2 spears of asparagus, etc). thank you. I haven't quite figured out which component of the FODMAPS bother me the most so I try to rotate the foods and not eat too much of any one thing.
Interesting post. I have had the same problem and it’s very worrying when it happens. All kinds of things go through your mind and add to the problem and the cycle continues. It’s like once you take that big gasp of air you become very aware of the issue and more big breaths follow. I have no idea why it happens and have been trying to join the dots. I have 3 monthly B12 injections and low iron results. I don’t feel anxious but I reckon this can be subliminal as I work and I’m sure their can be stress related issues. Also, have you had COVID? I have, and I see this can be a side effect. There is perhaps a lot we don’t know about about long Covid.
No new thoughts except getting tested for sleep apnea seems a good idea. Your experience sounds horrible.
Just wanted to say that the low fodmap diet is a short term ( 3 months ish) food elimination diet. It's designed to identify groups of foods that might be causing you a problem. You stop eating all the listed foods and then try them out one at a time to see if they cause symptoms.
The foods that don't cause symptoms can then all be eaten again. And some that do cause symptoms can be eaten in small portion sizes.
It's not a diet designed for the long term because it cuts out so many foods and may cause deficiency issues.
As I said to Denise, and I will say to all, it seems like if it was sleep apnea, I would continue to feel like I am suffocating for a couple hours after getting up. When up I usually just sit straight up in a chair. I can't lie back at all. It takes 1-2 or more hours for it to resolve.
I have been adhering to FODMAP diet general principles for years, but as you said, it is not a healthy long-term diet so I try to eat small servings of higher FODMAP foods here and there.
I had the same problem last night, very unpleasant. I decided that I might be developing a goitre and plan to get some thyroid bloods done. The heat seems to have triggered it for me.
Mine ended up to be multi-nodular goitre, causing a multitude of breathing issues.I recentlly had a thyroidectomy.
There is a physical test you can do, on your own. Raise both arms over your head and slowly lower your chin. If there is an obstruction there, you will find it difficult to breathe or speak properly.
Waking up feeling like you are suffocating / gasping, or waking up with a bad headache, or needing to wee lots of times during the night can all be signs of sleep apnoea.
You need to get a referral to a sleep clinic ASAP, to rule this out - and anyone else reading this who also recognises those symptoms should also get a referral…!!!!
I have a functional B12 deficiency. I was also diagnosed with sleep apnoea in 2020. I am currently using a CPAP (breathing machine) at night. It sounds grim - but I have got used to it, and the alternatives are really (really) terrible. (Blood oxygen drops below 80 per cent can seriously damage your organs (esp cardiovascular) and brain).
Losing weight can help (that’s a work in progress for me…).
It’s very unusual, but sleep apnoea can also just be rem-related (occurring during the dreaming phase of sleep, when breathing function switches to just the diaphragm, rather than the intercostal muscles (in the ribs)).
Mine appears rem-related (according to the sleep unit consultant) and I noticed that it seemed to get a lot worse a few weeks after my first 3- monthly B12 injection in April (I use a Viatom Checkme pulse oximeter to keep track, and it showed some really significant oxygen drops (down to 61 per cent - I was horrified), when I had the alarm function off (on the viatom checkme) and I wasn’t using the CPAP.
I have other muscle/connective tissue issues, which I am trying to get to the bottom of (and trying to see if they are B12 related), so I wonder whether (for me) a possible diaphragm weakness is part of that - and if it does prove to be B12 responsive, then that is another very (very) strong argument for increasing access and frequency of IM hydroxocobalamin…?
Good luck with it, and hope things get sorted for you soon..
I hear you loud and clear and I will (given the opinions here) pursue the sleep study, though I barely sleep at home...I can't imagine trying to sleep in a lab. Also I don't have these episodes every night (I just went 17 nights without one) so the sleep study will be pointless if I don't have the shortness of breath. That said, I believe mine do happen during REM sleep as I am always acutely aware of what I have been dreaming about.
I have a pulsoxometer (sp?) and my blood oxygen always read 98. So I am getting oxygen, My brain is just giving me a false signal that I am not.
I also have very weak muscle/connective tissue problems, and a lot of rib cage pain. I have extensive calcifications between my ribs. The docs all dismiss this as not relevant. I do think I probably have a weak diaphragm.
I do sub-cutaneous injection. Is there a reason you specified IM hydroxy?
Thanks for your time and for sounding the alarm on sleep apnea!
Sorry for going on about it!I meant injections generally, not just IM (I have brain fog quite a bit!).
The NHS hospital that I was referred to (in London) don’t do sleep studies in the lab any more - you just go in to collect a viatom checkme pulse oximeter, then do it yourself at home, then you have to deliver it back to the hospital before 11.00am. They just download the data, and hey presto! Then it gets looked at by a lung function expert, and they either call you to discuss, or I presume you could go in for an appointment.
About 6 months after I started using CPAP, I decided to order a viatom checkme myself, as it is handy to use it (if I can’t use the cpap for instance). But over tue last couple of months I have been using it every night anyway, just to keep track.
I paid approx £100 for mine online last year. If you wanted to check it yourself (and were able to buy one) then you would need to make sure that you turn off the vibrating alarm (which usually wakes you up when the oxygen dips below a certain level), so that you could get an accurate reflection of what was happening.
You could then take that to your gp for a referral. Or you could just get a referral anyway - it sounds like you are having quite major problems.
Interestingly, when my vibrating alarm goes off, I wake and start to take deep breaths to get the oxygen levels up - it usually takes three deep breaths to stabilise, but occasionally five deep breaths (maybe when it has dipped lower).
Anyway, good luck! And I hope you manage to get some good sleep soon!
Don't you think that the fact that my pulsox is usually normal 98% indicates that it is not apnea? I assume the viatomcheckme is the same as a pulsox oximeter but maybe it checks and stores your oxygen all night, not just when you wake up and measure it like I do?
I don’t understand - does your monitor just check what it is in the morning when you wake? I wear the viatom overnight, and it has data (pulse and oxygen) for the whole night. What does yours measure?
No, mine just measures pulse and oxygen when I put it on my finger when I wake up short of breath? It does not measure for the whole night. I am going to research this thing you use...
When the alarm on mine goes off, I wake with a gasp or two and by the time I look at the viatom on my wrist I can see that the oxygen levels have normalised (but from the readings that I get next day I can see that it was a big dip. I expect that the few breaths you take whilst putting on your monitor are normalising the oxygen levels…
I bought a EMAY pulse oximeter from Amazon and wore it last night. I now have to study what the results mean, but on first glance (really haven't studied it yet) it said I spent 24% of my sleep under 94% oxygen level (not that low?). The lowest recorded rate was 88%. My heart rate went down to 42 at one point. Again, I don't know if any of this is significant yet, but I am glad to have the date. This data is based on a night I DID NOT have an episode of suffocation, so I will wear it every night and see what happens when I get the air hunger. I am grateful for the tip, Dilly. I am so, so appreciative of all the feedback I got with this question. I think I am going to step up my B12. I think I have noticed that on the second night after my shot, I almost sleep through the night, but then I regress back to fragmented sleep.
I’m glad things are progressing for you. Oxygen levels below 94 per cent are considered problematic / low. Essentially, the number of dips below 94 per cent (in my case it was drops of more than 4 per cent, which is prob similar to ‘below 94 per cent’) averaged out over the hours you sleep in the night, to give you a score of dips per hour, and depending on the figure, it is then classed as mild, moderate or severe sleep apnea. (I think this is AHI (apnea-hypopnea index)).
Up to 5 dips an hour is considered normal. 5-15 dips per hour is considered mild sleep apnea. 15-30 dips per hour is considered moderate sleep apnea. Over 30 dips per hour is considered severe sleep apnoea. (It can go into the hundreds..).
I think the recommendation for moderate and severe sleep apnoea is a CPAP machine. (I had an AHI of 17 when I was monitored (moderate SA).
I’m really sorry to say, but spending 24 per cent of the night with low oxygen levels (below 94 per cent) sounds worrying, to me. I think you need to call your GP for a speedy referral first thing tomorrow.. (sorry)..
..and I also have to say, that I hope they don’t - but if the sleep clinic do recommend a CPAP machine when you see them, it can be fiddly/ tricky at first, but within a couple of nights it gets a lot easier and it can start to make a massive difference to how you feel (sleep is so so important for all aspects of health). I don’t think I could manage without mine now. I am still hopeful though that if I can lose weight I may not need it so much!
An amazing book about sleep is by Matthew Walker, ‘why we sleep’, in case you need any motivation to get the sleep apnoea sorted!
Make sure you keep a diary, in terms of how well you sleep and when you have B12 - (I take a screenshot of the data graphs on my phone) - and there may be a way to download the data via some software (you can do that with the viatom, but I don’t have the software).
As far as I am aware, no medical professional would consider that sleep apnoea and B12 might be related (although I did find one case written up in a research article). I really think that print-outs of sleep apnea data from consecutive nights compared with B12 injection dates would be very convincing…
Unfortunately, my sleep apnoea seems so bad at the moment that I can’t risk not using the CPAP, to monitor it in its ‘raw’ state…
Thanks Dilly. I will be saving the data and trying to connect the dots. I can’t say that I really wanted to have an “episode” but I am very interested to see what this gadget tells me about my heart and breathing when I do. You may have just saved me from a sleep study! For $84 (special deal) this thing gives a lot of information!
I apparently missed all your posts. So you don’t think this is sleep apnea but it IS reason to get a referral for other reasons. I have no confidence that any doctor I could see would know what to do with this information.
Sorry if my posts are so confusing. From my perspective - and going from what I have been told by doctors - I think it very likely that you have sleep apnoea.
My viatom data typically shows that I spend maybe 20 minutes a night with low sleep oxygen, whereas you are spending 24 per cent of the night with low sleep oxygen (although my low oxygen levels sometimes go down to 70-plus per cent (and once down to 62 per cent), but for the majority of the night I have normal oxygen levels. Any drops greater than 4 per cent are considered an apnea event (so that also probably relates to any drops below 94 percent) - of which, you must be having a lot to be below that for 24 per cent of the night.
I think you definitely need a sleep apnoea referral. Sorry again for being so confusing.
I think it will also be important to see if you can get data for a night when you have an episode, so you can see what is going on there (and what size the dips are).
So - to reiterate - I think it is very important for you to have a sleep study. It may well be at home (the hospital may issue a monitor), and it will be important to take your own readings to the hospital as well, in case the severity changes with B12 injections (so hosp sleep study might show nothing if you have just had an injection).
Okay, thanks for clarifying that Dilly. Night two showed almost the exact same data as night one but no episode yet...It will be so interesting to see what is going on when I have one. I appreciate your help a lot.
Ps - when I did the sleep study for the hospital, I made sure to sleep on my back (that always causes it for me), so that they would be able to see what was happening ..
If only I could sleep on my back! It would help a lot of my spine, hip pain. I have always been a side sleeper or (heaven forbid) even on my stomach! I know it is bad for my back but sometimes I am so desperate for sleep, I have to choose the lesser of two evils. Thanks, Dilly! I appreciate your input so much.
My neighbour's son suffers from a muscle/connective tissue disorder that isn't Ehlers-Danlos syndrome so I'm aware that there are other things. Wishing you every luck with all these problems.
Thanks for this - it’s really helpful to know other people have experience of this too.. Apparently there are hundreds of types of Ehlers Danlos syndrome, and only about 40-50 per cent of them are ever genetically confirmed (so there is so much that they don’t know about it all).
I really wonder whether there is a link with low B12 / high mma for the muscle / connective tissue thing… ?
As B12 is used in DNA synthesis and energy release in every cell in our bodies it definitely is linked... But how closely, its hard to say.
As you don't get muscle or skin or nerves or anything without B12, then yes, it is a factor in any problem. I wonder if a shortage of B12, especially over a long time, causes slight changes in the DNA of some cells so that they don't replicate correctly and therefore errors creep in - and these cause problems.
My joints used to be terrible but with enough B12 and methylfolate they have improved so much its like I'm 20 years younger than I was, when in reality I'm 20 years older!
Our bodies are designed to repair problems so with enough of the right "ingredients" - vitamins and minerals - they will, over time, try not to reproduce any dodgy cells with "broken" DNA in them, and instead will replace them with copies of good cells with good DNA.
Unfortunately environmental factors, including smoking and drinking alcohol, tend to mess up the body's ability to sort out the good cells with good DNA from those with damage and that's what leads to cancers and similar problems.
If you can get enough B12 and supporting vitamins and minerals, without too many detrimental environmental factors, there is a good chance that you won't get any worse and may improve. I sincerely hope so!
Some things are defects in our DNA from birth and because they are what our body knows as "correct" (it assumes we start out with perfect DNA before the environmental factors mess things up) it selects for that DNA and that's why many inherited genetic conditions gradually show up as we age - our bodies select for undesirable traits, thinking that's how we should be, until they cause symptoms. These problems are not reversible, except sometimes with medications that override the natural selection for the genetic problem - hence why it's usually good to detect problems as early as possible.
You are definitely not alone in having a bonkers body! 😘
Definitely have a bonkers body and also have known genetic methylation problems, especially w/ B and D vitamins. Right now, my goal is not to get worse. Before my methylation problems and deficiencies were known, I avoided these vitamins because they made me feel sick. I now have malabsorption problems with all vitamins and have to use the sun to raise my Vitamin D as my gut won't absorb it. I can't imagine feeling 20 years younger. I feel 50 years older...just kinda patched together.
Ah ha - this answers my message of a moment ago. It could well account for the insomnia problems. What a git!
More eggs? A food source of vitamin D. And a damn good excuse to eat cake! 😃
Have you considered trying vitamin D injections?
I have dreadful malabsorption problems too - due to genetics and a duff pancreas - but can take supplements, even if they don't hardly work. I always take them with food and my digestive enzymes, keep additional calcium 2 hours apart (calcium locks up most things) and crush them and put them under my tongue for best (some!) results.
Food sources of everything are way better than supplements in providing available nutrients... But only any good if you can digest food! I am prescribed Creon which is 7 to 10 times more concentrated than over the counter enzymes but anything might be better than nothing.
Did you know that you can get injectable folic acid too? Until recently I have needed the methyl in the methylfolate as much, if not more than the folate, so I haven't bothered to try it but know its an option.
You are one smart cookie and hit (some) nails on the head. I have serious malabsorption and am in the process of having my pancreas evaluated. That said, a short trial of a small dose of creon gave me crushing pain in my upper abdomen adding insult to injury. I fear this is what I need though...Digestive enzymes tend to increase my stomach pain badly...sigh! I may resort to trying over the counter enzymes again to see if I tolerate them better.
I have an endocrinologist appt. in August as we know I have serious Vitamin D deficiency. I tried all last year with supplements and sun to increase my vitamin D to no avail. We found out I have a homozygous mutation on the VDR receptor, thus the apparent inability to absorb vitamin D. I fear an infusion of vitamin D as my body has a difficult time with conservative amounts.
As you have probably picked up, I "over-react" to supplements like I do to drugs which is how I found myself so deficient. I just avoided things that made me feel "revved up" which all vitamins do, especially the B's and D. So now I am trying to play catch-up and it may be too little, too late. I am trying to eat more green veggies and things with folate to get it from food as methylfolate is a disaster for me as well. I am about to get a vitamin D test again to see if the nearly 3 months I have been getting daily sun exposure has helped. I was not very aggressive with it before but I am being very disciplined and aggressive now so I hope my blood levels are up.
I am not supplementing magnesium but I think I get quite a bit from food. I had a "red blood cell" magnesium test (much more accurate than a simple magnesium test) and my levels were good. I try not to supplement when I don't need to as it seems to muddy the waters a bit.
I have been wishing I could get folate injections though I am guessing the folic acid is the only form it comes in. I supplement with folinic acid....not a lot...but every time I do an injection. It is my understanding that it is not unusual for people to respond poorly to folic acid and/or methylfolate. I seem to do okay with folinic acid as long aas I don't take too much.
So I am working on B12, D, folate, and my magnesium (RBC) is good. I get a lot of vitamin K through diet as this is also indicated for vitamin D absorption. My gut is really a mess. I weigh only 88# at 5'2". I am actually in a real health crisis now. I have been for a while but it is all crushing in on me currently and I am not sure I will get out from under...
You asked, and brought to mind, many poignant ideas and thoughts. Thank you.
Of course if I make progress I will check in. I already have with the B12. I normalized my homocysteine and MMA in less than 6 months with conservative B12 injection treatments. Unfortunately this has only translated to better blood work so far; not better quality of life.
Sorry all of this took up so much time and space and energy! I am quite sick and appreciate the help. It is better than anything I get from any doctor.
You weigh 14 kgs less than me (I'm 119lbs) at only 2" less and I see what you are saying about being at a crisis point. I can understand your frustration at having to wait for appointments - you need help last year and now, not 2 months time - if you're lucky!
Normalising your homocysteine and MMA is a huge feat in itself and you have done brilliantly to have done that. If you can maintain that it will really pay off in time, I promise. Homocysteine is like a poison to your whole system, which is why its so important to get it down.
Vitamin D deficiency is as bad, with similar symptoms, as B12d so I'm not surprised you haven't felt any better yet. However if you can get somewhere with the D (+K2, of course, exactly), having got your B12 improved, it will give you a chance to actually feel better too.
Really interesting about folinic acid - I've heard of a few people doing better with that. I've suggested it several times on here.
I have a friend from when I was a child who is allergic to folic acid - even in food. That's a tricky one!
I know some people in the pancreatitis groups say Creon is a killer, where to most of us it's a life saver! It might be worth joining one of the pancreatitis groups - there's a HU forum on here and a couple of Facebook groups - and asking for their suggestions too. Don't be panicked by how ill some of the poor people are though - or the fact that several are there because of alcohol abuse issues. Lots of them have incredible knowledge of the general workings (or not! 🙄) of the whole GI tract, not just the pancreas. That said, I'm surprised by the general lack of knowledge of nutrients and deficiencies, but there are some specialists.
Oh, thanks so much for your support today, Denise. I definitely feel like this is all caving in on me now. I feel a bit responsible. I live a very, very obsessively clean lifestyle and I am underweight, which is not good but avoids some problems there.
I have an MRI of my pancreas/abdomen on Tuesday. I am sure a prescription for Creon is coming. It is frightfully expensive as well as really strong on a fragile gut. I do not have proper insurance for it right now so I may have to start with OTC supps. It all is over-whelming as my body doesn't adjust well to changes and I need a ton of D, B, enzymes, etc. Which to do first? How much pain/insomnia can I abide? I also need calcium supplements as I am allergic to dairy and have severe osteoporosis but calcium causes me severe motility problems. It's a viscous cycle... I need the calcium but it causes my digestion to stop and my pancreas hurts as well...blah, blah, blah...
I have not had the best medical treatment though I have really tried to get it. Most of what I do, and try comes from my own work, like many here! I am working hard on trying to get the right nutrients but it isn't easy. There are folinic acid drops (in ionized water) on Amazon that one can take if folic acid/folate/methylfolate doesn't work. I seem to be very intolerant to methyl groups and methylfolate is known to be anxiety inducing and stimulating so it is not a good match for me.
I just ordered the device Dilly recommended to wear at night and see just what my oxygen levels are doing. Perhaps that will be insightful.
Thanks for urging me to try a pancreas support group either here or on Facebook. I am going to need support.
Again, Denise, I am humbled and grateful for the time you have taken with me. I think you can see the enormity of my problems. Thanks for the thumbs-up on my progress with B12. It has been quite a journey figuring out what works for me. Now if only I can do the same with Vitamin D. Do you think that the fact that my Red blood cell magnesium is good means I don't need to supplement that as well? I am trying not to over-whelm my body with a bunch of new stuff. It won't work. I won't be able to sort anything out.
The specialists would often assume poor diet smoking ect.
My daughter cooked her food . Also for others .
Never drank alcohol as didn't like the smell . Sipped it a few times and was disgusted.
Never smoked.
I think it wax stress abd pushing through too often ad told to
Get on with life too many times by medics.
Also accused of laziness .
Actually ...polar opposite
So often at the doctors in pain dismissed as growing pains
In her head
And the list goes on
Then reluctant to even see a doctor as they had never helped her.
Difficult to pursue .
Why oh why are notes not read.
A medic who can tie all investigation together.
Specialists do not talk to each other unless you are in hospital long enough.
She is more educated in nutrition than the specialists shex seen.
They have said as much.
It's not so much what we eat as to determine if it can actually be utilised.
I am s victim of thinking a very good diet would keep me well
Of course it does if you csn absorb the nutrients.
That waxs a shock to me
Also a shock thr medics loathed to do nutritional bloods if nothing else found.
This is huge. Hopefully on someone's agenda
It was a'general medical consultant ' in an a and e that finally took an interest in my daughtef and believed her.
This was after being left on the ground outside and ignored ax she physically hadn't made it through the doors when you then are under thd responsibility of the hospital.
Noone stopped to help outside the doors .
Only on return from parking the car!!
Was she helped in
Flabagasted outside the door in pain ignored .
A busy Addenbrookes
Very same hospital once IN had the doctor that took an interest!!!
Back to being really listened to.
First skill now seemingly has to be taught to medics
Many academic children get pushed into being Drs by pushy parents and they are often higher autistic and basically hate other people. It's no wonder they don't care.
Addenbrooke's guys are a world apart.... Thank goodness.
Hi there, I’m so sorry to hear you are dealing with this. I have had this for years too and it is very scary. At first though many years ago, I was diagnosed with a Hiatus Hernia which caused me to wake up choking which was scary for me as well as my Husband, I have never been a good sleeper since infancy and have had studies etc done, seems I just don’t need much sleep!! However I started staying awake to try and avoid these choking incidents, which was pretty detrimental! I was told by a male GP that I had the Hernia because I had had 3 children and should think myself lucky!! He wasn’t my favourite!! Anyway, I have had major health issues for almost 20 years since my youngest was born but last September something changed, I just knew something new was going on! Was tested for many things until one day a Locum GP at my Surgery asked to do some tests, she didn’t want to say what she was thinking until the bloods came back but when they did she was one part overjoyed at her find and one part sorry for me!! She said I had extremely low B12, no folate and diagnosed Pernicious Anaemia. She is a fabulous Doctor which makes it difficult to get to see her but I have been getting B12 injections since the beginning of the year and have found this forum and all of the people contributing to be wonderful and a great help and source of information so thank you!
Since last September my Apple Watch would buzz and light up if I did manage to fall asleep in the early hours, would happen after 10 minutes or so, turns out it was warning of low blood oxygen. I also, as well as still having the choking incidents had times when I woke up and felt like I was suffocating/dying (I know this sounds dramatic but it’s true!) I would have to walk around the house sometimes for hours until I was able to sit or lie down again!
I saw someone mentioned Covid or Long Covid as a possible cause, I have had Covid but earlier this year and this has been happening since well before that. I have also been tested for things like sleep apnoea in the past.
I’m so sorry for the long post and do hope you get to the bottom of this, it is very disconcerting to say the least!! I do thank yourself and every person who posts, much as you hate to hear others suffering, it is also a comfort to know you are not alone!! Take care from Sunny Scotland!!
It’s great news you have such an understanding doctor. Can you download data from your Apple Watch to your phone, then take screenshots or photos of it, to give to your doctor (so that they will refer you on)? If you have found it to be worse since September then perhaps it is time to get sleep apnoea checked out again? These things can get worse over time (my health has taken a bit of a nose-dive coincidentally at the same time as menopause..).
Yes my iPhone records all the data and have showed it to my GP. I worried that she would think it silly “quoting” my Apple Watch but she seemed to think the technology to be pretty accurate and said I should always wear it at night and charge it in the day if possible!! I’m awaiting Cardiology and Neurology appointments, so perhaps will find out more then, just feel exhausted with only getting on average 10 minutes sleep at a time!! As stated, I am used to needing little sleep but even I reckon I need more than I am getting at the moment!!
I had had menopause symptoms since a full hysterectomy 2008 age 32 and finally was put on HRT in January 2021, the experts all kept saying I was too young to go on HRT but would put me on it when I turned 45?? Never got anyone to explain the science behind that if there is any!! I turned 45 in December 2020 and they still refused to give me HRT but I managed to persuade a GP I needed help, I had obviously tried to help myself all these years to little or no real permanent success! Anyway, thankfully the HRT patches I am now on seem to have aided with most of the menopause symptoms.
I have also been on Fentanyl patches since 2013 and know morphine based medicines can slow breathing etc but the Drs have all said the patches aren’t the issue?? I have never smoked and very rarely drank and don’t at all since being on such strong medication so also wondered if the PA/B12/folate deficiency could be a factor?! Many a Doctor/Nurse has outright said to me they do not understand much about B12 which blows my mind!! My eldest Daughter is a Student Nurse going into her 3rd year and just recently did a study of B12 with Medical Students at the University so hopefully it’s being taught more widely to the Nurses and Doctors of the future!!
I am seriously contemplating buying my own B12 as I have seen many others doing because my GP said the NHS recommendation is an injection every 3 months but I certainly feel that I may require it a lot more often than that! Next one is 6th July so will see what happens then!!
Again, thanks to all who contribute and offer such understanding, comfort and help 😊
I used to get short of breath if I used a fentanyl patch. I only had six hours before the breathing problems kicked in. I respond that way to all pain killers so I use nothing for pain...ever. It seems that if it was the fantanyl patch was causing your breathing problem it would be constant. It was for me. It took my pain away but it took my air too.
I am unclear. Have the shortness of breath issues gotten better since you started B12 therapy? It's interesting to me that you, too, have to be up and about (moving) to be able to lie down again. As I said earlier, though, my oxygen is normal when I wake with this suffocation feeling. I haven't had COVID, but I worry about it so much because I know what suffocating feels like, and I know people struggle to breathe when they get sick with COVID (and sometimes for a long time after)
Much as the B12 certainly helped with many other things was so grateful to receive it, I still had these episodes of falling asleep for all of 10 minutes only to waken feeling like I was being suffocated and in a panic! I normally stand up and walk around, sometimes for quite a while and it feels as though I am gasping for air, it is quite horrible but when I realised my watch was taking readings I realised my blood oxygen was pretty low in these instances, perhaps this is because I was told my red blood cells are “huge” was the word used!! I have mentioned this happening to many Doctors and Nurses and on stays in hospital Nurses have witnessed it but no one, even my lovely new GP have seemed too concerned about it and you are the first person I’ve seen say it happens too! I am on quite a lot of medicines unfortunately, some pretty powerful ones but none are new so I wondered if it was something that went hand in hand with Pernicious Anaemia as that’s the only thing I know I started really getting the symptoms of at roughly the same time. My family and I were very lucky with Covid I have to say, me, my Husband and 3 children all had it very mildly, like a common cold and my Husband works in the main hospital where we live and my eldest Daughter has worked in Covid wards right throughout the pandemic, I was amazed none of us caught it before January this year to be honest. I absolutely understand peoples fear though and hope it stays well away from you. Sending best wishes.
Hmmmm....more food for thought. I am on very low doses of 3 meds for depression and anxiety. Have been on them for years, every night, and have experimented w/ taking meds during day to see if it changed anything and it didn't. This has been going on for quite some time, but has increased in frequency a hundredfold in the past few years.
my mother got pernicious when she was 34, she was breathless and very weak, b12 injections improved everything, maybe you need a complete check up, could it be anxiety i dont know, your doctor and if not happy ask for a second opinion, i too have pernicious anemia for the last 18 years get checked out maybe you are not getting enough b12 i dont know do you smoke?
I have never smoked. I am highly anxious, mostly because I am so sick, in pain and tired, and none of it is under control. I do get therapy and calming body work treatment every week. It seems as though this would bother me during the day and happen every night if it is caused by anxiety.
That sounds really difficult. I hope you get it sorted out soon.
My own air hunger that I was aware of was when I was awake. But I do recall sharing a room with someone when we were on a course, more than 30 years ago, and they told me they daren't sleep because I kept stopping breathing after I'd gone to sleep. Poor thing.
That’s interesting - yes, it is quite often partners who have to tell a person that they have night-time breathing problems! It may still be an issue for you, so would be worth getting checked out with a doctor.
Yes I have this same problem and it can come for several weeks at a time then I’m fine for a while before it comes back. I’ve had it for years. I suspect acid from reflux being aerolised and inhaled into lungs as I lie down (??). Doc has never taken it seriously but I now have small airways disease (possibly as a result of this..) still to have respiratory appt to discuss ct findings.
this is interesting. Perhaps something like this is happening to me? My digestion is very very poor. I am not ever aware of reflux, though. I eat a low acid diet.
Thank you to you and all who replied to my question. I am grateful. I am reconsidering a sleep study, reflux issues, diaphragm weakness, though I am not sure who, where to go for these problems. My docs all write it off as anxiety now. I just know it's not that; though I have anxiety about gasping for air all night...I went 17 nights without any problem, air hunger problems that is. I NEVER sleep well. Frequent awakenings always. Thanks again everybody.
As someone who has injected all three forms of b12, and then exercises on that day, it was clear to me that the highest level of hydroxocobalamin hits on day two or possibly three. For myself, I could distinctly feel the difference in immediacy.
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Did you answer about testing for sleep apnea? EDIT:I see you are considering a sleep study
Litatamon, Do you mean that exercise interferes with the hydroxy effects in a good or bad way? I walk more than an hour every day but am not well enough to do strength training.
lack of iron can cause shortness of breath and GPs dont very often do the full range of tests to establish deficiency. I was anaemic for years and told bloods normal but they never tested my ferritin.
Air hunger can be how B12D manifests itself. The oxygen isn’t getting round as well as it could, and your body (mis) interprets this as you not breathing right, and stimulates the gasping reflex.
My wife had this, and tests for sleep apnoea have been inconclusive. But the devices to combat sleep apnoea will actually help here anyway.
We haven’t needed to go as far as getting a CPAP machine, but she uses a wedge pillow to sleep slightly upright, and now has weekly SI jabs instead of struggling pointlessly to last a month at a time.
One or both have helped; but where she used to have to take the wedge pillow when we went for a weekend away, she now uses it only at home. We put this down to the more frequent SI-ing.
If only I could sleep that way, but I appreciate the input. Perhaps I really need to step up my B12. I had a good night on night 2 after my injection. (no air hunger)
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