Oxygen & Headaches

Hi Knitty, yes, just woke with one today, as I often do - well about twice weekly on average I guess. Know I probably need an overnight test but keep putting off mentioning it to doc because I would probably need to try 3/4 nights on the trot as can go two nights no sleep at all, another night just 2 or 3 hours and then once or twice a week I sleep 6 to 8 hours, like last night, and yes, thats when I wake up with the headaches. Got to dash and get my cuppa now and get back to part 2 of your pm - I just sent part one when I saw this post. Bye for now, Van x

PS. Hi to Jacee, hope you are well and enjoying sunshine, will talk more soon, love Van xx :hug: hugs to all xx

Hi Van,

Do you use O2 during the night?

As I thought the headaches were due to lack of oxygen, so if you are using it during the night then thats not the cause!

I have to say that just lately except for the odd very hot night I have been sleeping better.

It could be that I now take 2 Tramadol before bed!

Plus I have managed to \"re-train\" my bladder, I drink lots in the morning & up to 3pm then hardly anything after 3pm and at the moment I now only wake once in the night for a \"wee\" !!

It is great as I had started getting up 4 times a night so I was really exhausted all day!

I am off to ring mum again, cut short last time as she needed the bathroom!

Love Knitty xx :run: :run:

Hi,

No I don't use 02 at night, I just have daytime ambulatory 02. I have a 'mother tank' of liquid 02 stored in the utility room, from which I fill my smaller flask. This goes into a bag that I wear when walking around, doing housework etc. throughout the day. I have it as a shoulder bag when out, and a backpack at home hoovering / ironing etc. I don't use it when sitting as my sats usually stay around 90 to 94 then. I absolutely love it, but it's not meant for nightime (the cannula is only 4 foot long) and I haven't been tested for nightime. Also I'm worried they might give me C-PAP if they do test me as I think I may also have sleep apnea, as I do sometimes wake up in the night making choking noises and feeling like my head is about to explode for want of a breath!

In view of the above, I do know that weight gain plays a major part so am hoping to deal with it by exercise and diet. Also I think my throat and upper airways are 'floppy', so - don't laugh - I've started singing (though my voice disappears on me after a few seconds) and doing Ommm sounds, la,la,la's and all sorts of weird and wonderful things when I'm alone and the windows are closed! :yawn: :lol: All the same, if the headaches get more frequent and my self help doesn't start to show results, I will mention it to the Doc at the 'oxygen clinic' I will be attending 3 monthly for general 02 check ups.

Lots of love, and do try having a bit of a sing song - it does lift the spirits too.... love Vanessa x

Hi Again!

So much for my paperwork!!

I had a night study done at home, it was just a finger pulse oximetre & a cannula both wired to a control box that I wore around my waist.

I get the results in a couple of weeks.

I had had a habit of waking up in the middle of the night, very similar to that feeling you get when you are trying to go to sleep & you feel like you are falling but I would be gasping for air.

My husband said I used to snore horrendously also.

After then I started to take my Spiriva at night instead of the morning & it did improve so perhaps you could try that.

I know what you mean about weight, but it is so hard to shift.

As for singing...........

I dont think so!!

The walls are very very thin here & I dont want to upset the neighbours, Ha Ha !!

Luv Knitty xx

P.S. I have sent you another PM!!

Hi you two (and everyone else).

Just thought I would share that I have now used oxygen for a minimum of 15 hours daily (including overnight) for about 16 months. My sleep pattern is similar to Vanessa's (see above) and I have NEVER had a headache upon waking, either before or since I started to use it. Mind you, I can't remember ever having a headache at all; I don't think that particular pain receptor is connected - I don't even get hangovers!

The results of my first 24 hour finger oxymeter test showed an average of 90% oxygen saturation over the recorded period - sounds good till you realise that I was over 90 for half the day and so obviously under 90 for about 12 hours when I should be above for 15 hours daily. The test is to be repeated sometime over the next two weeks on a different setting (the first was on 1 lpm). Don't know why it takes so long.

Meanwhile, I am enjoying the sun. How was your festival Van? Please share some details as I must have lived a very sheltered life - I have never even seen a Morris dancer.

Jacee

xx

Hi Jacee,

How are you - any news on the oxygen front yet? I was just wondering if they've done your second test yet and what the outcome might be. Also how's the exercise going - are you keeping up with the weights etc and are you seeing any improvement yet? I do hope so.

I fell off the wagon for a few days when it was really hot, but then having come across numerous examples (usually American / Canadian) of folks with readings like FEV1 30 0r 20 etc doing at least an hour a day serious workout, I gave myself a serious talking to and got on with it. I've noticed that these people tend to get around a lot more than I do. They are also living on into their 70's or 80's without deterioration of FEV1 or physical ability! Time and time again I read the same things ...... ' take your meds, avoid infection, maintain an ideal weight and exercise, exercise, exercise!

I have adapted my routine a little and it has now become habit. Six days a week I do 15 minutes on the treadmill (early morning) with 60's pop music for motivation. After a rest break with a glass of orange 'vitamin juice' (multi vits and minerals) I put morning news on TV and do 20 mins exercise bike. Then I shower and get on with my day. In the afternoon I either do more cycling in 20 minute sessions, or I do weights to strengthen my upper body. I had been neglecting the weights, but a week or so ago i really started to notice an increase in muscle strength in my thighs, and this seemed to highlight my upper body weakness even more. So now I do weights every other day and I'm enjoying that too. I can't believe the difference in the way I feel!

One more thing I did was to leave a nice soft single duvet rolled up at the side of the room. Every couple of days if the fancy takes me, I spread it out on the lounge floor and lie there stretching out, do a couple of gentle leg raises or lift my shoulders up off the floor a couple of times in a 'mock sit up'.

i'm also proud to say that I've lost 9lbs in the past 3 weeks, though i'm still huge and have a long way to go. It has given me a boost though, particularly after not losing anything for ages, no matter how I tried. I think it must be due to either muscle growth or to increased metabolism - or both. I'm going all out for it now though, in the hopes that I will roughly resemble my old self by this time next year, plus be a lot fitter.Incidentally, I think my SOB is improving gradually too!

I hope this finds you all well and enjoying your summer, talk to you again soon ( I'm off to cycle now) love Van xxx

:tennis: :run:

Update;

Wow! Life's a B****! Weighed myself this morning and I haven't lost an ounce this week! Exactly the same as last Sunday - I wouldn't mind but I kept strictly to my 1,200 cals, made sure I included enough protein too, and exercised, exercised, exercised. I've cycled, walked and stretched every day, and added my weights routines in every other day. If I subtract the cals burned from my cycling alone, which is usually around 300 - 500 cals, that really makes my intake more like 700 - 900 cals. What is it with this illness that has some of us expanding like balloons and others going skeletal after a lifetime of 'normal' weight? And I don't think all this hard work and hunger has even taken a centimeter off my measurements either. :cry:

I know I am way less SOB, able to do so much more than before, more energy etc. so I wouldn't stop doing it and go back to how I was just 2 months ago. For example, I used to dread my shower, the extreme SOB it caused and the wiped out feeling I had for an hour or so after. Now i am only getting slightly out of breath and also can rub myself down with the towel after instead of having to just sit in it. It's incredible the difference in such a short time. I'm convinced if I could just get back to an acceptable weight / size, I won't even need my oxygen anymore.

Oh well, I guess I feel a little better for getting all that off my chest :roll: I will just have to pedal even harder/ longer this week! I will let you know if there's any progress after next Sunday's weigh in, Love to all you gals, Vanessa xx

Hi all, Don't mean to go on about it , but just wanted to show you just one example of the kind of stuff that has spurred me on, and convinced me that exercise is key to living longer and better with this illness. Please note this is just one 'average' example ;

''Exercise is absolutely critical to managing and controlling COPD. Because I exercise every day, I am able to travel, to take my grandsons on vacation, visit people I enjoy, and in general enjoy life. I'm 66 and my FEV1 is 34%, the same as it was in 2000 when I was first diagnosed. I was at the U of Iowa Hospitals today to do the last test to see if I'm a candidate for LVRS (I am not, as it turns out, because the damage in my lungs is too generalized). One of the questions I asked the surgeon was if there was a chance that my lungs would deteriorate over the next several years to the point where I might be a good candidate. He said as long as I don't take up smoking again (as if!), continue with my exercise routine and don't catch something awful that I can't recover from, he saw no reason why I shouldn't maintain at my present level of functioning for many years to come. I always said I was married to a treadmill, but I think the relationship has just been sanctified (LOL).

As for continuing to work out even when you're not feeling your best, I usually do, unless I'm running a temp or am coughing so much I can't keep going. I find I feel better when I work out than when I don't, even if I'm not quite up to par.''

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The main point to note of course, is that she has held her FEV1 at the same level for 10 years now. Even more importantly, if she avoids infection and continues with her exercise routine , she is expected to stay the same ,and active, for many years to come. It is the many folk I have come across like this that have given me hope and direction for the future.

Love Van :wink:

Hi Van,

Don’t give up on your good work!

I know I cant talk as I need to loose some weight but you have been doing so well.

I remember reading somewhere that muscle weighs more than fat so perhaps that is why your actual weight hasn’t changed this week? As it has changed to muscle!

Another thing is I remember when I last tried dieting, your body gets used to less food & your metabolism slows down to compensate for less food.

I have Rosemary Conley's Metabolism Booster Diet book and it suggests changing your meals, i.e. eating 4 smaller meals a day, and varying them more.

Just think how you feel after a shower & I am sure that will spur you on.

Take Care, Knitty xx

P.S. Did you get my PM on Wednesday?

Hi Van

I am still plodding on – thanks for asking. I am collecting the 24 hour pulse/oxymeter on 19th July to conduct another test, then see my own consultant on 28th. I am still attending at pulmonary rehab but am really struggling. I started at 30 seconds per exercise (as we all do) but after all this time have not been able to increase much. Although I religiously do at least five days a week and I am not a slacker, I really push myself to the limit, I find that the limit is soon reached. I now do between 45 seconds and three minutes on each of the exercises, the arm ones coming much easier. I find I am very soon gasping for breath and am told not to push to my upper limit (although I often do) and my sats still drop quite considerably even when I am on 4 lpm. However, I have also read others' experiences and looked at the research and it is obvious that exercise improves quality of life and also prolongs it, so I will keep going.

What makes it harder is the weight increase I have to carry about. Though my health trainer tells me I have an ultra healthy diet, my portions are smaller than average and I exercise to my maximum level of tolerance, I recently bought new knickers and had gone up another two dress sizes. I have now gone from a skeletal size 8 (because I was a smoker and also too breathless to eat properly) to clinically obese and my shower has gone from a 3, through a 5, to what is now a seven stage operation!!! (Turn on, undress, get in and stand under flow; wash hands, face and neck; wash arms, armpits and shoulders; wash upper body; wash private bits and enormous backside; wash one leg and foot; wash other leg and foot. Then I have to wash my hair, another four stages. And yes, I then sit in a towel with another one round my head until I am about dry.) :cry:

You sound to be doing wonderfully well, Van. Like knitty, I think you are probably turning “flab” into muscle. Having routines is the key to doing the exercises regularly and yours sounds really enjoyable too, which also keeps motivation high. You WILL lose weight but even if this is a slow process you will be so much fitter in getting there it will help to keep it off, so do not lose heart. You are an inspiration to many of us. :idea:

Hope you enjoyed your festival.

Jacee

xx

Hi Jacee,

First may I say \"hats' off to you\", keeping going with the rehab exercises when its such a struggle for you with your oxygen problems - and sorry to hear it's taking so long to sort your 02 out. I hope your consultant will be able to help you in some way and that you will soon be feeling some improvement in your life.

You have my complete sympathy and understanding on the weight front. It seems so unfair that we have to cope with this on top of everything else. I do think that the COPD medics and research folk are generally ignorant regarding weight gain. They put it down to us just sitting on our bums, or eating wrongly, but I am certain there is some underlying cause. When women (and men) suddenly balloon in size/weight after a lifetime of normal weight and eating habits, and it happens to so many of us - most of us in fact as we reach the more serious levels of the disease - then it is obvious that something in the disease triggers it. What tickles me is that nearly every COPD book I pick up talks about extreme weight loss and how we should try to eat more. I know a minority of people have problems in that direction too, but from what I've seen so far, it's mostly weight gain that's the problem.

I know that in my own case, the weight gain and muscle loss came BEFORE the inactivity. I am very aware of this because as I tried to struggle on with my massage business (before diagnosis) I noticed a shocking loss of muscle in my upper arms as massage became more tiring to do - and also in my last year before giving up I had to buy a new uniform twice - each time a size larger. Now that can't be blamed on 'inactivity' - I challenge any doctor to spend a day giving massages - especially sports or remedial massages which can be quite physically demanding. So don't ever feel it's your 'fault' that you are gaining this weight - though do all you can to fight it of course, and remember to eat a good level of protein as we need to fight muscle loss.

Please don't mind me mentioning this, but wouldn't you consider trying Symbicort again? Remember it takes three plus weeks to build up to full effect. The reason I say this is because it made at least another 5% improvement in my FEV1 and I do notice the difference in my breathing if I miss it. It also keeps inflammation at bay - I haven't needed prednisone once since using Symbicort. Do think it over or talk it through with your consultant. Please? Pretty Please? Oh, and also I didn't bother with my own Symbicort either after trying it out for a fortnight I thought it didn't do anything for me, but my respiratory nurse had a go at me about it and made me give it a longer 'trial'. She kept checking with me that I was regular with it, and I'm so glad now as it does make a difference - in fact if I had to choose between Spiriva and Symbicort, I honestly don't know which one would win out, its a close call.

Well I'd better finish now as I'm still sat in my nightie and haven't done my morning ' dreadmill' yet! Keep well Jacee, thinking of you, love Vanessa xxx

:hug: big hug

Hi Van, Sorry but I will have to pass on the Symbicort. I did try it but found I had so many chest infections (four in a year, which resulted in four prescriptions for corticosteroids) that I gave it up. Also put me off that it can cause pneumonia in COPD patients. Since I gave it up I have had only one chest infection in about 18 months. Are you sure it was the Symbicort that helped your FEV1 improve? Could be your exercise regime you know! Anyway, glad there is an improvement for you whatever caused it.:D

By the way, I had the extreme weight loss first - down from a 12 to an 8 and falling towards a 6. Then, suddenly, I piled it on whilst eating the same and working full time. I took the same amount of exercise - just got more breathless. You are right, there must be some explanation not yet put forward.

Enjoy your exercises. I am going to mine at rehab again today. (I talk of being in rehab and my family think it is hilarious, associating it with drug or alcohol abuse. This is particularly poignant when you consider that I used to refer others onto these programmes very often!)

Hugs right back at you :hug: keep smiling.

Jacee

xx

Just a 'quickie', -Yes - funny you should mention that - I had the whole village warning me about anorexia / did I have diabetes etc just BEFORE my weight gain. At 5'7\" high, I had always been a dress size 12 (summer) 14 (winter) , but inexplicably went down to an 8 - 10 over a period of a few weeks - I was losing quite literally a pound a day and everyone was going on about me not eating - but I was - just the same as I always had done. And then after a few lovely skinny months of being 'able to wear anything' , BOOM! on came the weight. In fact, come to think of it, that skinny period could well have been when the major muscle loss occurred, 'tho I didn't notice it 'till later. Hmmm, I wonder if others had this 'skinny before fat' thing too? And are the 'skinnies' the same but for some reason didn't then balloon and just stayed at that skinny stage.....? It's my last happy memory of someone commenting on my appearance ..... my skinny period , standing in the post office queue, and a lady behind me saying \" just my luck to be stuck behind the girl with the perfect figure\" ..... oh! bittersweet memory! Luv V. xx

Hi Guys,

Sorry not to have been in touch for a while, I have been busy, started a new relationship after being on my own for ages (give or take the odd fling!). So far so good... :D

I also had extreme weight loss - from a 10/12 to 6/8 (very worrying and before I diagnosed with COPD). I hated being so skinny and was pleased when I begun to put it on again. I reached a decent size 10 again and was so happy. BUT..it didn't stop! I put on 3 stone in 3 months ( a 14 may not sound like much but my whole shape has changed, none of my clothes fit me and I don't enjoy dancing like I used to. I assumed putting it on so quickly was giving up smoking, but...loosing it was spooky and now you guys have made me think it is the COPD?!!! Grrr I hate this disease!

I got my Spriva but to be honest I haven't noticed a lot of diff (after all that!).

Hope you are all keeping well, Knitty, Jacee and Van and everyone

I think you are all marvellous xxx

Hi Flossie, lovely to hear from you. You seem to have followed the same pattern as the rest of us with your weight. I thought I had gone to a 14 because I had stopped smoking (though I did not eat more) but I hope you don't continue to pile it on as I did (my knickers are now size 22!!!!!!!!).

Glad to hear you have found someone new, hope he deserves you.

Keep smiling

Jacee

xx