Hi.
I just wondered if many others find their asthma getting worse when it's windy outside?
If so what do you do? Are you able to tell the wind is coming before it really arrives as you can feel your asthma getting worse?
I've always been the same with the wind, it flares up my asthma; even though i'm Prednisolone steroids at the moment.
Becky
It can set an attack off if I'm facing into the wind but the mere presence doesn't set me off. Although thinking about it all that wind blowing all sorts of allergens around makes sense to effect some people with allergy induced asthma. I do, however, ensure that my mouth and neck are covered by a scarf when I go out during this time of year so that'll probably acting as a crude filter as well.
I do the same ON. I find I cough even more in the wind and can't catch my breath. I use a loose scarf round nose and mouth and find it really helps. It means I am breathing in warm air instead of cold. x
Never thought about the warmth afforded to air whilst coming through the scarf. I have to have a heated tube for my APAP machine or my asthma plays havoc. Sleep is hard enough with Sleep Apnea's without adding asthma into the mix.
I think it's the cold air hitting my lungs which sets off my coughing ON. Poor you having sleep apnoea as well. Do you have to use a CPAP machine? I bet that's a right pain. Take care. x
I use an Automated CPAP machine and it took awhile to get used to it and it's a pain in the rear end when we go away or if I have a performance too far away to drive there and back in one day. But them's the breaks. You'd think with my singing and brass playing my throat muscles would mean I'd not suffer, but my sleep consultant reckons it's because the muscles are so well toned that when I sleep they relax and block.
Take care of yourself also x
Apnoea sounds scary.
Have you had it all your life?
Hi Becky, my Sleep Dr seems to think so, although we all have them, it only becomes a concern when you have more than five occurances an hour there's a time frame as well but can't remember it off hand. I've been diagnosed for eight years so I'm used to it now. It did cause some freaking out when they first detected it.
Do you sort of have it under control, now you can use the machine at night?
I wasn't aware that we all have them.
I have it well controlled now I have my automated CPAP it adjusts my pressure levels as I need them so I don't have to worry about needing to adjust them manually.
Apparently everyone has small amounts of apnea's especially when in deep sleep or if you've had a large amount of alcohol or drugs. For most people it's nothing to be worried about, it's when you have a lot of them over an hour that lasts for longer than 10 secs. Just looked it up.
I do find it very interesting.
I like how people ask questions to each other about their condition, or your condition. And then that can get you to learn more about your condition to be able to answer someone else's question about your condition. 
I'm finding i'm doing that about my condition; asthma as well.
The machine that you use at night, do you use it with a face mask, with the straps over your head to keep it in place? I wonder if it's like using a nebulising machine, which i have done many times. I use the face mask. But as your'll be asleep you won't be able to hold the tube yourself.
Yes I use a full face mask, the head gear has improved in the eight years I've used it, and I find it keeps getting smaller and lighter every couple of years. Which helps.
I like hearing how other people cope with their illnesses too, it's useful to measure how you're doing against someone else and the advice that an experienced hand can provide is priceless.
It certainly helped to ease the worry over different treatment regimes. It's also good to hear I'm not a freak in having such a high 'normal' PEF.
How high is your normal PEF reading?
My normal is between 640-680. So it doesn't take much for me to notice symptoms that most Drs wouldn't bat an eye at.
That is high, i guess that is good. You can have alot of breath. My highest used to be around 500.
A lifetime of singing and playing a brass instrument. It is high, but then again I'm just shy of six foot tall.
I knew a guy at work who had sleep apnoea and he used the CPAP machine. He used to be very sleepy at work and unable to concentrate so he was moved to lighter duties. He said he felt a lot more alert using it which is understandable I guess.
From what he said it can be life threatening... I am sorry you have to use one but on the other hand isn't modern technology wonderful sometimes?
Are you on YouTube? I would love to hear you sing as I love opera. If you are can you put a link in please. I have always wished I could sing and it's the one talent I would pick over all others. x
I did notice an increase in my awareness after the first couple of nights, although my wife wasn't impressed at the Darth Vader impressions. And thank God for medical advances or we'd all be 'brown bread' by now.
I haven't uploaded anything onto YouTube, it's not something I've ever thought of. If I can manage my performance this weekend, I'll see if I can get my other half (The Management) to film it. I'll let you know how I get on.
Do you have to use your APAP machine every night?
Yes I use it every night, or I have an awful nights sleep. It does suck when travelling but you do get used to it.
Are you able to do exercise like ride a bike when it's windy out? Or would you not even think of doing that?
I'm a full time wheelchair user after having a spinal injury so no I can't ride a bike, been looking to purchase a hand cycle, but they're awfully expensive but I need the exercise. So the short answer is I don't know... 😉
I hope you can pick up maybe a secondhand cycle which you could get and do some exercise. Since i did my knee in (soon to have an op on it) i'm unable to do any cycling, and i've put on quite a bit of weight, even though i do a little bit of walking, but so painful on my knee. I used to love road cycling.
I'm keeping my eyes peeled as my teenage boys both love cycling so I feel a little left behind some days, but that's part of the job description I suppose.
Hope they get your knee sorted out keeping fit is important for lung function as well the mental aspects.
Yes i hope you do find one, it that's what you'd to try. Do keep in touch if you do find one. And start to use it. Are you able to do swimming? That's meant to be very good for you.
Thanks about my knee, yes i forget that it's good for my lungs too. Thanks.
I'm not able to swim due to other interventions around my bladder. But I've got lots of people keeping an eye or for me. So fingers crossed it won't be long before I'm clad in Lycra there's an acronym doing the rounds for gentlemen of a certain age. Can't remember it at present. Lol. Keep us in the loop with your knee too.
I'm sorry to hear that. So good that you have other people there able to keep an eye on you.
You're remark on gentleman in clad in lycra made me smile. I do wish you all the best.
Okay thanks, i'll keep you informed with my knee op. It's now been moved to 27th March due to me still not feeling well enough to have it done on Monday.
Hi. Are you from the UK?
I'm from the UK, don't know if anybody else is.
I feel the same. The wind feels like it blows my breath away. Temperature changes are difficult too. Stepping out into the cold feel like my chest seizes up. I wonder about how the wind might change the air pressure or temperature to affect sensitive breathing, but I hadn't considered air pollution.
Thanks for your reply. It got me thinking so i just did some research about air pressure and temps.
I think for me i can feel my asthma getting worse without going outside. Having a cold and sore throat (still on steroids), at the moment is not helping my asthma, but other times of the year i can cycle in the wind and i'm not to bad.
I read that seasonal wind from changing from seasons can make your asthma worse. I wonder if that's it in my case, we are soon to be coming into Spring in the UK here.
Q1. Does the wind effect your asthma all year around, or only certain times of the year?
Q2. Do you have asthma or COPD or both? I've just been reading about COPD. Seems if you have asthma as you get older you can have more risk of developing COPD as well.
This is an interesting link which describes differences between asthma and COPD
healthline.com/health/copd/...
Becky
Hi, I'm not a big fan of windy days. If I can I just don't go outside, or else I scarfie up and take blue inhaler.
It is just like the wind takes my breath away.
Very very windy here today
Hi Becky I don't like the cold northern wind, I use 2 puffs of my reliever when I go out as recommended and I wear a scarf on my nose and mouth. If not it's ok, just that wind carries more particles and pollen I suppose..
HI Happylondon.
Yes that sounds like a good thing to do to try and stop the wind and particles getting into you.
Do you find that the wind can bring on your asthma when you are inside a building/home as well?
Hi Becky no it doesn't affect me when I am inside except if I feel the cold but I wear an extra layer :))
.....Oh good grief YES....I hate walking when it's windy. Can't catch my breath. I've noticed this since I was a kid...
100% the windy weather affects me. Its two things, firstly the pollution and stuff in the air gets swept straight to your lungs, secondly its the wind itself. I don't know if you have seen a physio therapist for Asthma, but if not OMG! it saved my life, especially with the wind. She showed me how to breathe, plus how to breathe if I had not got my Asthma reliever with me etc. Well it worked, really worked and works. I use my puffer a lot less when out and this happens. About 3 weeks after being shown the breathing techniques I had to go to London for a hospital appointment, I had picked up an empty reliever. In London I get an attack almost immediately, I was on my own in one of the most polluted streets, thought I would die, I did those exercises and managed to get to the hospital. It worked. Anyone who has not been shown or forgotten those exercises should definitely get them. It can save lives.
Hi Mitz. Thanks very for your reply. What a great story and info. So great that the exercises really worked for you, and made you cut down on your inhalers.
How long have you been doing the exercises for? Does it still work well for you?
I can't remember if i've been shown the breathing exercise before or not. I'm seeing the asthma nurse tomorrow morning, i shall ask her.
If she she's not sure, do you have a link available where i can find the breathing exercises which worked for you please.
Becky
My Asthma still very bad, I have another illness Vasculitis which attacks my immune system so Asthma up and down. But believe me those exercises really do help when you are in an attack, plus I found I was not breathing properly either, I was shown how to breathe. I honestly thought before I went it was a waste of time, but it was the opposite. I was told by the physiotherapist that most people don't breathe properly. Its hard to explain, but I think all Asthma/chest patients should be taught this. I went twice. Its so hard to explain what to do. But when you see your Asthma Nurse tell her what I have told you. I saw a Physiotherapist at the Royal Free, Hampstead, London apparently there it is/was a regular thing. Also told me if I was having an asthma attack (you can ask your Asthma nurse this) to put on a fan next to my face, it helps with the breathing etc. When I told my asthma nurse (physio told me this over 4 years ago) she freaked out, said no don't do it. Recently saw an asthma nurse again and she told me to do it. So I think the Royal Free are ahead of their game. I will look tomorrow and see if I can find the exercises. At the time I told an Australian friend and she told me that the exercises are standard procedure with their asthma nurses and she saw a physiotherapist from the start. I hope you manage to get one, think all asthma patients should be checked to see how they breathe. Its saved me a number of times, even with the Ventolin, helps get it down. Plus I have a nebulizer on the NHS, had a job to get that one, but I did, otherwise would have called 999 so many times. My breathing so much better now. Hope this helps will be back if I can find the exercises, but you do need to see a Physiotherapist if not seen one already. Not a cure, but really helps.
HI Mitz.
Thanks very much for your reply. I saw the asthma nurse this morning, briefly i forgot to ask about breathing exercises for asthma sufferers. She wanted me to get checked over by a doctor, so i saw a doctor 10 mins later which was amazing. He was very nice, he listened to what i said and let me decide on what i think i need now. He wanted to admit me to hospital but he could see and i told him i don't want to do that. So he is happy for me to keep using my nebuliser at home and if i get worse i come to see duty doctor straight away, and he wants to see my nebuliser, which i can understand.
He mentioned to me in Canada they don't nebulise asthma sufferers, They use inhalers and spacers i think he said. He asked me if i thought the steriods where working or making a difference, i said i've been on them 2 weeks and i don't think they are. He didn't say stop taking them, or ween myself down on them, so i'll keep taking them.
The only thing they would do for me in hospital is put me on a i.v drip, and monitor me.
So i'm not scared with asthma at the moment, i got some more nebules to use in nebuliser and i'm happy with that. He said i won't be put on anymore antibiotics, which could give me another allergic reaction. So i'm happy enough with that.
I know when my asthma is not under control that my whole body and my breathing changes, it's still like i'm in survival mode, and i try and breath the way i feel is most comfortable for me.
I did go to a Alexander Technique class many years ago, but it was too much for me, to much of change and focus i had to put into it.
I did look up another breathing technique which is meant to help, but i didn't really get into it. It seems i'm stuck in my breathing ways.
I used to do meditation for a number of years, which helped control my breathing. But once i get wheezy it all goes out the window.
It seems you have taken quite some time looking into different breathing techniques and finding out expert advice from the professionals. It's nice to read what the new techniques are and how they are advancing with helping people with asthma to breath easier.
Q1. Did it take you alot of effort and change to do the exercises which you mention works really well for you now?
Q2. Is it easy to keep up the exercises? Or do you find yourself slipping back into your old breathing ways?
Q3. Or are you a changed person because of doing it?
Becky
Oh Becky I am so sorry your breathing so bad, I have been there, still am off and on. You see I was first diagnosed with Asthma, then eventually I was diagnosed with an auto immune disease called "Churg Strauss Syndrome/EPGA" and its very rare. One of the first symptoms is cough and asthma. So mine is up and down, can be terrible breathing for 6 months and then gut trouble etc. Ha!Ha! But luckily I belong to a Facebook Closed group for my disease, there are X nurses on there and X health workers from all over the world. Up to 3 months ago the Canadians do use Nebulizers for Asthma. It was my Canadian friend who worked for the Canadian Health Authorities who got me to insist on a nebulizer. However, if you are bad, please, please do not hesitate to call 999. Please don't just rely on it. I use it when I am bad because the spacers etc do not get the meds in my lungs. Sitting down relaxing and breathing properly with the nebulizer it does. Regarding the steroids, I been on steroids permentently unfortunately for 10 years, various strengths. However, cannot take them orally now stomach bad. I have monthly steroid infusions now. Plus I can manage to take Hydrocortisone different strengths depending on my CSS and Asthma. I manage this myself. But sorry too much information about me. There is a new steroid sparing drug for Eos and bad Asthma, my friends been on trials for years, now NICE has approved it. There are 2 other companies producing similar, all getting good results but not approved yet. My friends claim these drugs as miracle drugs, those that take it and on trials have managed to go back to work. So there is hope for all asthma sufferers. The exercises I do are not at all exhausting, just simple breathing and posture. Don't tire you out etc. Not muscle building. Had a rough night, but will asap find those exercises, if I cannot find, I will contact a FB friend who is an X nurse, she will find me a link or send me them. But take it from me, check your peak flow, relax and don't take any chances, call 999. I have learned my lesson, once my breathing went completely, I walked over to my Nebulizer, luckily enough I had filled it earlier. I woke up 2 hours later. Really though I was going to die, never had the phone near either. So take no chances. Because of my condition, not so much the asthma, have had to call 999 loads of times. I have spoken with loads of ambulance people, they tell me better to call 999 with breathing problems etc rather than we die. Once I was really bad, called 999, put nebulizer on, ambulance came, I felt fine when they came, but found out my heart rate etc was bad. They took me in, I spent 5 hours in A&E then came home. Better to be safe than sorry. I think your doctor needs to find the right medication for you, we are all different. I went through loads until I found the right one. But as I say I am permanently on steroids for the asthma and the CSS. Not a good thing but keeps me alive. Unfortunately I cannot exercise because of my illness, I have put on over double my weight, I have been on permanent diet, low carbs, low fat but the 10 years and high doses of steroids have made me like this. I am lucky, last year I lost 3 dear people with CSS, all ones that advised and helped me, so I am very lucky. Wish I could exercise but I cannot, but I do eat really good healthy food. Before this 10 years ago I was skinny, I cared too much about appearance etc, but I have met the most wonderful people in the world, lovely kind caring people and I don't care anymore as long as I am clean and tidy. Oh I wish for my super slim figure, no bust and completely flat stomach, but I am alive and I can see the sunshine or fog Ha!Ha! But with Asthma and under control you can do anything, so look after yourself, eat good healthy food and exercise if you can. I am sorry I will find those damn exercises, its really posture and knowing where to breathe from. It also helps me to walk because I breathe properly. After sitting down every day, doing the exercises for 15 mins every few hours I do it so naturally. However, when in an asthma attack or upset or excited I slip back, cannot breathe and remember to breathe properly again. The exercises are so damn simple, most people don't breathe properly. I even remember losing about 4kgs in a month when I first got told. I find the UK doctors have so many different opinions re Asthma. We are all different too. Hopefully can get back soon. My email address is mcostello99@yahoo.co.uk you can message if you like, if you don't hear from me re the exercises its because I am a bit rough, but hopefully will get back to you. Asthma is not all doom and gloom, have friends with what I have and once under control with right meds its all good news. Just be careful. One other thing, never just stop steroids suddenly unless advised by doctor. My father-in-law suddenly stopped from taking 50mg twice a day after 6 weeks, died of an asthma attack, well it caused heart attack. Steroids are only thing keeping me alive and asthma under control, but as I say I have this other disease, most asthma sufferers unless really acute only have them temporarily. I am hoping to get new drug in next few months, as I has eos asthma and it will help my CSS, but have to speak with my Respiratory Consultant next month. Sorry for the waffle. Just passionate that you don't take risks. Have you a Asthma Plan? This is written out by you and your GP/Asthma Nurse, it tells you what to do and what meds when your peak flow reaches a certain level. If you don't have one, ask for one. All this information was given to me by fellow sufferers. I am not medically trained just a sufferer and this is all experience. I wish you well.
Hi Mitz. Thanks for your long message. I enjoyed reading all of it. Very interesting and informative. Hearing your experience with you illnesses and what you've been through.
So you've been on steroids for 10 years. Do you think they are helping keeping you alive? I wasn't sure if they are working for me, as i don't seem to get any better.
I'm sorry to hear about your terrible experience with blacking out for a couple of hours after you managed to nebulised yourself. So you're very familiar with using 999 lots of times. I've never called them out. 111 last 2 weeks have wanted me to call an ambulance, but i've always drove myself the 7 miles to be nebulised for over 16 years. I seem to know my breathing limit, or i think i do, or have done so far.
If i really couldn't breath even now i have my first nebuliser at home, i wouldn't hesitate to call 999.
My asthma attack last 2 weeks is acute, normally my asthma is under control. Last time i had i really bad attack i was in hospital in 2000 for 3 to 4 days. That was scary, and i had to cry. Some nurses were sympathetic.
No i don't have an action plan, although i have printed out the template. I need to focus on it more and fill it out.
So Canadians do use nebuliser, interesting.
That miracle drug does sound amazing. I really hope that you can get to go on it or the trial.
I feel for you with the weight gain. I used to gain a bit of weight before when i was on steroids years ago.
But i'd rather breath better than be thin. I'm slightly overweight now. I've had a bad knee for year and half exercise i used to do, mainly road cycling has taken a back burner for a year and half. But i was meant to have operation on it yesterday, but i had to cancel it due to not feeling well. Now booked in for knee op on 27th March.
I will look after myself, and keep doing my peak flow several times a day i find it does help, it's a good guide. I don't tend to use it when i feel my asthma is under control.
And i won't hesitate to use the nebuliser if i feel i need it. And do a Pulse Oxmeter to check couple of times a day, even though it may not be that helpful. Least it tells me how much oxygen percentage my lung capacity is working at which at the moment is '%Sp02 98'. Although the doctor this morning said it's not very accurate with asthma.
I'm sorry to hear about your father-in-law. That's terrible and so sad. I didn't know stopping steroids like that can cause death. I'm on 5mg Prednisolone tablets. 8 Tablets a day for 10 days. That will take me up to 3 weeks on them.
I appreciate your replies and your experience, and contacts and interactions with private facebook group and x professionals. it is enlightening for me to hear it all. Yes i can see with having such illnesses that you get to meet some wonderful people, who have diseases like yours and meet some wonderful x or current health experts and professionals in the field.
Don't worry about the exercises, don't over exert yourself to find it or the link from other people.
I'm not so familiar with auto immune disease. It doesn't sound nice. I will look it up.
I wonder why the" body attacks and damages its own tissues." in auto immune disease.
"In response to an unknown trigger, the immune system may begin producing antibodies that instead of fighting infections, attack the body's own tissues. Treatment for autoimmune diseases generally focuses on reducing immune system activity. Examples of autoimmune diseases include."
"Treatment often requires daily oral prednisone, a steroid that reduces immune system function."
You said you can no longer take it orally, but have it injected once a month i think you said.
So for you Prednisone really helps reduce immune system function. I not sure what that means.
Wow it says:
"Rheumatoid arthritis. The immune system produces antibodies that attach to the linings of joints. Immune system cells then attack the joints, causing inflammation, swelling, and pain. If untreated, rheumatoid arthritis causes gradually causes permanent joint damage. Treatments for rheumatoid arthritis can include various oral or injectable medications that reduce immune system over activity.
Systemic lupus erythematosus (lupus). People with lupus develop autoimmune antibodies that can attach to tissues throughout the body. The joints, lungs, blood cells, nerves, and kidneys are commonly affected in lupus. Treatment often requires daily oral prednisone, a steroid that reduces immune system function.
Inflammatory bowel disease (IBD). The immune system attacks the lining of the intestines, causing episodes of diarrhea, rectal bleeding, urgent bowel movements, abdominal pain, fever, and weight loss. Ulcerative colitis and Crohn's disease are the two major forms of IBD. Oral and injected immune-suppressing medicines can treat IBD.
Multiple sclerosis (MS). The immune system attacks nerve cells, causing symptoms that can include pain, blindness, weakness, poor coordination, and muscle spasms. Various medicines that suppress the immune system can be used to treat multiple sclerosis.
Type 1 diabetes mellitus. Immune system antibodies attack and destroy insulin-producing cells in the pancreas. By young adulthood, people with type 1 diabetes require insulin injections to survive.
Guillain-Barre syndrome. The immune system attacks the nerves controlling muscles in the legs and sometimes the arms and upper body. Weakness results, which can sometimes be severe. Filtering the blood with a procedure called plasmapheresis is the main treatment for Guillain-Barre syndrome.
Chronic inflammatory demyelinating polyneuropathy. Similar to Guillian-Barre, the immune system also attacks the nerves in CIDP, but symptoms last much longer. About 30% of patients can become confined to a wheelchair if not diagnosed and treated early. Treatment for CIDP and GBS are essentially the same.
Psoriasis. In psoriasis, overactive immune system blood cells called T-cells collect in the skin. The immune system activity stimulates skin cells to reproduce rapidly, producing silvery, scaly plaques on the skin.
Graves' disease. The immune system produces antibodies that stimulate the thyroid gland to release excess amounts of thyroid hormone into the blood (hyperthyroidism). Symptoms of Graves' disease can include bulging eyes as well as weight loss, nervousness, irritability, rapid heart rate, weakness, and brittle hair. Destruction or removal of the thyroid gland, using medicines or surgery, is usually required to treat Graves' disease.
Hashimoto's thyroiditis. Antibodies produced by the immune system attack the thyroid gland, slowly destroying the cells that produce thyroid hormone. Low levels of thyroid hormone develop (hypothyroidism), usually over months to years. Symptoms include fatigue, constipation, weight gain, depression, dry skin, and sensitivity to cold. Taking a daily oral synthetic thyroid hormone pill restores normal body functions.
Myasthenia gravis. Antibodies bind to nerves and make them unable to stimulate muscles properly. Weakness that gets worse with activity is the main symptom of myasthenia gravis. Mestinon (pyridostigmine) is the main medicine used to treat myasthenia gravis.
Vasculitis. The immune system attacks and damages blood vessels in this group of autoimmune diseases. Vasculitis can affect any organ, so symptoms vary widely and can occur almost anywhere in the body. Treatment includes reducing immune system activity, usually with prednisone or another corticosteroid. "
So auto immune system can attack any part of the body.
This is the link where i found the above info.
webmd.com/a-to-z-guides/aut...
Thank you for your email address. I hope you are feeling better really soon.
My email is mason-becky@sky.com.
Although it's nice to write what's going on here, then you might get other people replying as well. But i do appreciate the offer of emailing each other.
Becky
Ha!Ha! Wicked is it not. The things I have learned since having this disease. Thank god for the internet and facebook, I would be dead without it. Mine is a rare form of Vasculitis, nobody knows what caused it etc, even then each one of us is completely different re the drugs etc. Lots of my fellow sufferers have had heart and kidney damage, mine is gut, bowel, sinuses, neuropathy etc. Oooooooo sounds awful, but its not I am lucky, I have no feeling in from my knees to tip of my toes, numb, but bones and muscles hurt. Also hands and arms, no feeling. Don't feel sorry its good, it happened so gradually over about 5 years, did not know, I was so clumsy was having rows with family. They all said you have to take care, you are too clumsy. So when eventually I saw a consultant for this and found out I was numb, I laughed, he thought I was mad. But it explained it was not me, it was the disease. Lots of us have it, we fall, trip etc when not thinking, we call it our dancing.
Oooo so sorry you have this, awful when you like to exercise, ride a bike etc. You will again, just need the right meds. Yes steroids have always worked for me, yes they keep me alive. Awful things, but they keep me alive. I have chemotherapy too, now every 4 months, that sounds awful too, but its not, I just have to stay in bed take anti-sickness and rest, some other sufferers feel nothing at all. Just one bit of advice, the consultants have found in a lot of CSS patients that some of us are better with Hydrocortisone, (its a more sort of organic steroid), you have to have much more but it works for me much better. That is what I take orally at present. A respiratory specialist at Addenbrooke's Hospital, Cambridge tested a lot of CSS and Asthma patients and found a lot of them were better with Hydrocortisone than with pred. Just a thing for you to keep in mind in the future. Often when in an attack, without reading any notes, the A&E and doctors give me IV Hydrocortisone, it really works so much better. Better on the gut too. God I sound like a hypochondriac.
Also re the knee operation, if ever you have to have an operation and you feel too scared with a general, please think on having the pain spinal blocker. There are risks of course, like going paralysed etc. I had to have one as they found I had bladder cancer when they did a routine scan. That was fine too, but the word "Cancer" scares people, more scared of dying of Asthma attack. I was lucky got a cancellation within 2 weeks of finding it, but however, my body gave me really bad Asthma attack. I was let out night before my operation, but I insisted they take the cancer out. They said impossible have to wait 2 months after an attack. I suggested/insisted on pain blocker, they did it, it was wonderful, I went home same day. I am clear, it was not a bad type of cancer, but in 2 weeks 3 more tumours had grown. Thanks to the internet informing me about pain blockers I got my operation.
I just looked for exercises etc, cannot find one yet, have to get hubby's dinner on, but found this one. This explains where you should breathe from. Perhaps you probably do, I always breathed from my chest, not my stomach. Still will look for you.
But reading the stuff on internet you should and must insist on seeing a physiotherapist for your asthma. Lots on internet about it. Both normal exercising and breathing exercising keeps lungs healthy and your heart too. I don't know where you live, but do a search. Royal Free in London are marvellous with their physio and asthma. I will message tonight or tomorrow on my group, ask them for the breathing exercises, I am sure one will send me a link. Have to wait though, its the time difference, mainly they are in USA/Canada. We have sufferers in the most remote parts of the world too. It started off with just 5, I joined at 30, now over 800.
I only use my nebulizer when asthma bad or having an attack, I use 4 puffers, if that don't work, I use nebulizer. One time I was on it for over a year every 4 hours, through the night too. Its fine now. Saves NHS a fortune, how many times would I have had to call 999 in an attack? Your Asthma nurse should monitor peak flow and fill out that form with you. I had same trouble. It was only on my insistence that I got it done. They take note now. Marvellous and rightly so you got to see your GP. Mine's awful. With my disease I am so lucky in one way, its not under control, therefore I don't catch infections. Obviously the last chemo must have done something as I caught pneumonia. Plus there is never anything on my chest, I don't crackle Ha!Ha! But when it started off years ago I was coughing up all the time, but no phlegm. GP sent me for a whole year having stomach tests! I knew it was Asthma, my mum had it. Then it was my nose. Thankfully I paid private because GP just kept giving me sprays. I was rushed into private hospital, hours away from death, my sinuses were completely blocked and start of blood poisoning. On and on it went. My allergist saved my life. She diagnosed CSS got me appointments etc. At that time I was not even seeing her as a patient. I found her email, emailed her at midnight, 2am in the morning she replied. Ooo sorry too much information. Just trust your own body. Make a fuss if need be. You have only one life so you press on. Get that action plan filled in and see a physio. Make such a big difference to me.
Oooo one other most important thing. Have you ever tried a tablet called Montelukast/Singular? My allergist gave it to me it was wonderful, my Asthma was non existent. I thought I was cured, but told I must take all my meds. Unfortunately, that brought to the fore my CSS, hence my email to my allergist, she knew that the montelukast was the problem, it was causing me to have a CSS flare. Montelukast/Singular is really good. My monther took it for many years, she was 93 when she died, her asthma was completely under control. She never died of an asthma attack. She had Asthma from 50. Bad asthma, nearly died 4 times, then given Montelukast. Yes, she had chest infections etc, but look at her age! So if not tried Montelukast, ask. But if you do get symptoms taking it, either immediately or after, see doctor. My sister is on Montelukast too, no problem. Just me, I am weird, not allergic to anything except medication Ha!Ha! Oooo Aspirin and food which has silicates in (organic form of Aspirin). Now too many tomatoes give me asthma attack. I was a Vegan Ha!Ha! Had to change my diet.
Oooo sorry I sound like a hypochondriac. I tell people only because it might help. Without fellow sufferers or their families I would have died so many times I have lost count. Have you found a trigger with the Asthma? Mine as I say is food and mainly the CSS. To the annoyance of the respiratory people and asthma nurse, even in freezing cold weather I cannot sleep etc without the window open, without it I cannot breathe. I am a terrible hospital inmate. Window open Ha!Ha!
Best Wishes I will get back when I find those damn exercises. I know it is silly but me, my mum and hubby never done the following.
To perform this exercise while sitting in a chair:
1.Sit comfortably, with your knees bent and your shoulders, head and neck relaxed.
2.Breathe in slowly through your nose so that your stomach moves out against your hand. The hand on your chest should remain as still as possible.
3.Place one hand on your upper chest and the other just below your rib cage. This will allow you to feel your diaphragm move as you breathe.
4.Tighten your stomach muscles, letting them fall inward as you exhale through pursed lips (see "Pursed Lip Breathing Technique"). The hand on your upper chest must remain as still as possible.
Note: You may notice an increased effort will be needed to use the diaphragm correctly. At first, you'll probably get tired while doing this exercise. But keep at it, because with continued practice, diaphragmatic breathing will become easy and automatic.
Hi Mitz. Thanks for you reply. Yesterday i felt i needed to regroup, and i was able to have a chat with Asthma.uk asthma nurse on the phone (for first time ever). I wanted her advice, of what i need to do next as i didn't know. All the good advice that you have been giving me has been so useful and encouraging. And your sense of humour which comes through in your messages is great and it makes me smile and gives me hope. You seem quite an inspiration to me with your attitude and all of which you've been through. You seem grateful for what you've experienced. And i admire that greatly.
The asthma nurse on the phone when i told her i'm only on 'Qvar 100mg and Ventolin 100mg'. She suggested i ask the doctor to be put on a Combination Inhaler like a 'Fostair' which is a 'long acting inhaler.'
Also to ask for some 'Actrovent nebules' which i can use at the same time as the 'Ventolin nebules' in my nebuliser machine.
So the GP phoned me back quickly and made up a prescription for me to go and collect it.
Asthma nurse also mentioned about 'Montelukast' as soon as she said it, it told her i had been talking with you yesterday and i remembered that you had mentioned that name to me. And how it's like a miracle cure.
Asthma nurse suggested i just bring it up with GP and see what they say. She said though if i'm taking all 3 new things together and it makes me feel alot better, then i won't know which one was the one which made me feel better.
When i spoke with GP he said the same thing. He also so what he prescribed me the other day was just to treat my then cause of not feeling well.
I picked up 'Actrovent nebulise' around 4pm. They didn't have the 'Fostair in 200mg dose' so i have to pick it up at 1pm today.
But i felt i turned a corner in feeling a bit better by tea time yesterday. My breathing felt not worrying.
So i choose not to take or try to nebulise myself with either 'Ventolin or Actrovent nebules' yesterday evening.
And i slept so much better last night. My asthma felt so much better. I noticed my nose felt blocked, first time in months. So i unblocked it. Always blocked during the year except winter when nothing is alive. I love nature, i really do, even if it causes me havoc with my allergies, sinus etc.
So with the new medicine i was given yesterday, i started to feel better before i even took it.
Which is interesting...
I bought myself a pre-paid NHS certificate for 3 months, as i thought it save me alot of money not having to buy each item on prescriptions at £8.40 a time. At £29.10 for 3 months, is good value, i've done it before but only when i've thought i'd need alot of medicines.
Q1. Do you do that as well? Or perhaps you pay for the year one, or get it free depending on your condition?
That's very interesting that you find taking the 'Hydrocortisone' organic steroid instead of the Prednisolone works better for you and for alot of other asthma sufferers. I've never heard of that steroid before and my GP's A and E doctors have never mentioned about trying me on it instead of Prednisolone.
I shall write the name down and bring it up another time and see what they say.
Thanks for the advice about asking for a 'Pain Blocker'. All operation info and advice is all new to me. As like i said i've never had an operation before, so i really have no experience and little knowledge about what to expect and ask for.
All i have is the print out of what the hospital gave me on 'Arthroscopy of the knee'. And the slightly more indepth downloadable version.
I'm meant to go for the 'Pre-Assessment appointment on 13th March.
I finish this last lot of Pred steroids on this Saturday.
Q2. Can i ask your advice, that will i be safe to go for the pre-assessment on the 13th March?
Or do you think i will need to cancel it again, as it's too soon after me having the nearly 3 week asthma attack, and i'm still not back to normal yet.
You sound so brave and knowing. That you can say to the professionals what you need and what in order to get what you feel you need at that time, for your the operation... Yes Cancer is a scary word, but your more scared of an asthma attack.. Yes the internet is a marvel with advice and information at our fingertips.
Q3. But how do you know what information is correct and not correct for you, as everyone is different and things work differently for everyone? Depends which sight you look on and look at research and tests, trails, medical papers... Yes..
I have been seeing a physiotherapist through my insurance company as i was driven into from behind while stationary in a car in Dec. But she is treating me for neck pain. When i see her again i will ask her about breathing exercises. Thank you, i wouldn't have thought of doing that.
Q4. How does it make you feel when a GP is telling you it's your stomach for a year that you have to have tests on it, when you said you know that it's your asthma instead?
Were you not able to change your doctor to one which actually is interested in what you think and feel about your body?
That you may actually know abit more than he does in some cases, as you're the one living with it.
So you went private as doctor kept giving you sprays... Interesting..
Wow- so your my sinuses were completely blocked and start of blood poisoning. You where hours away from death.. God....
You said your mum had it as well, so you knew the signs... Thank god you took some initiative and went private. I wouldn't be able to afford to do that.
So your allergist saved your life. She diagnosed you with CSS and got you some appointments.
"Trust your own body. Make a fuss if need be. " Yes thank you does sound like good advice. I do do that.
Q5. So i'm confused. Did you say the Montelukast helped you, but it also brought on your CSS and a flare up.
My asthma triggers are penicillin for sure, more anti-biotic medicines that i try.
Old triggers Dust, certain cat and dog hair, household cleaning irritants products. Wind, perfumes and certain perfumed scented things, incense sticks, cleaning sprays. People smoking if my asthma is bad. (When it's good i like the smell of cigarette smoke- being an ex smoker myself i still like the smell.)
Q6. Have you had Kinesiology testing before? And do you think it's good way to test your health to foods we eat? I had it done about 15 years ago, and it showed up some things like garlic i think, but i love garlic.
The asthma nurse from Asthma UK when i phoned her yesterday she gave me a plan of where i need to get too at the moment, to get my asthma undercontrol, and then make another action plan and more forward thinking of what needs to be done after that. To maintain healthy asthma to the best of my ability.
I need to keep it up and slip and forget about using my inhalers once i feel better again.
I go through periods, of taking my medication well for months and months, then i slowly stop taking the preventer. I must always do it, even when i wonder if i will have the money to buy a new prescription of preventer inhalers.
Thanks very much for adding the breathing exercises. I shall print them out and look at them, and give them ago. And research about them to find out more.
Great to be chatting with you.
Becky
Hi sorry for delay, I am bit rough with my CSS symptoms, don't worry I am OK, just the normal with a bit of a flare. Ha!Ha! Alive though. I promise will answer all your questions etc asap. But one thing about your operation, do not worry please. You ask should you go ahead with pre-assessment. Well that is not for me to answer. A pre-assessment is usually done by a nurse, dependepent upon each clinic they ask several health questions, always asthma. But if it were me I would either contact one of the following: GP, Asthma/Respiratory Clinic or the pre-assessment for advice, informing them of your recent attack and health. But whatever you do don't ignore it, they will be happy to help and advise. Operations, mmmmm, its dangerous for anyone, just like its dangerous to cross the road, its luck. I hate operations but in past ten years I have had at least 7. One with pain block. I have got through even when my sinuses been blocked and asthma has been bad. I was just kept in a while longer, with 02 etc. No worries still here. I would go again too, recently had to be put out just for a colonoscopy as a previous one was too painful without being put out. I survived, was let out 2 hours after, hence getting ill, but that was my CSS attacking my gut, they let me out too quick. So no worries. Please phone about the pre-assessment. That is what they are there for. When in hospital please always make sure you have a red wrist band stating your allergies. Believe it or not once I never had one, gave me wrong med, was ill. So always insist especially if its a drug you are allergic to. Yes, I am a mess things happen to me.
Sorry waffle on, my fellow CSS sufferers have kept me alive with information. Often patients know more than there doctors only because we go through it, find things and doctors don't have time to listen.
Montelukast/Singular, if your asthma after this episode is not good etc, this drug is wonderful. I don't know how good/bad your asthma is. I mention these things just in case. Its all from my experience and my fellow sufferers experience. I pass it on in case now or in the future it helps. Doctors have so many drugs to prescribe and we are all completely different. It was my allergist who prescribed the Montelukast, not my respiratory or GP. I had been 2 years fighting to breathe, that worked for me. When I told my GP he said oh yes that is a good drug. Unfortunately it brought my CSS to the fore. My CSS is very, very rare. Nobody knew a thing about it. With another group and fellow sufferers we are getting doctors to learn more. They know so much more now. People have died in hospital as they had not a clue what was wrong. Word of mouth is good too, now even the Ambulance men know all about it. They are the best our Ambulance men/woman. They work too many hours too. But I have been given wonderful kindness from them.
Your nose. Have you got polyps? Beware of Polyps. I only say this as my mum had them for years and years and 3 operations. If you keep on with blocked nose and/or sinus problems for a time, get GP to check it out. Polyps that are treated early stop having operations. Mum would not listen hence 3 operations. If you have a few, then nasal medication can shrink them. This is one thing with my disease, nasal polyps. My case was for CSS, not treated for years, hence emergency operation. I had polyps completely blocking my nose and sinuses right up to my brain. This won't happen to you, honestly, unless you have CSS or Wegners. Oooo never meant to scare you. Polyps are like weeds and need to shrunk, lasered out etc. Not saying for one minute you have any, but Asthma patients and sometimes the meds can cause them. Probably yours is just a blockage as you say you been on steroids. Steriods keeping my polyps down. As I say this is a symptom of my disease.
Hoping not scaring you or anyone. But without the information before and after I got diagnosed with my disease I would be dead. So many people been kind. It may not help you, but you never know it might help someone.
Sorry I am waffling, my back is killing me and my abdomen, so have to go and lie down Ha!Ha! ooooo I am lazy. I will be back. Look at your other questions.
Thank you I am only ordinary. I feel if we help each other, even if it is with a smile, the world will be a good place.
I go to hospital at least 1 per month by Ambulance, a long journey about 1.40mins to 2 hours one way. Oh the ambulance people are wonderful. Most of them are employed by private company now. They work really long hours. All the ones I have met work for British Red Cross too unpaid in their spare time. They are my saints. We talk about Asthma. I have helped them lots too. Its often the ambulance people who save us before we get to hospital. One has asthma himself, really bad, now on montelukast and is fit and well. There are some really wonderful people in this world. Not me. Ha!Ha! Evil person scaring you with all this information.
Right bed calls, not to sleep to rest my back.
HI Mitz.
Sorry for the long delay back. Feel fit to reply back now.
Thanks for your suggestions. I will phone up pre-assessment this morning and try and talk with them.
How are things with you at the moment?
I hope that you are up at the moment. If not i'll send you some warm rays of light and cheer..
That's s great that the ambulance people are so great to you, and that they are clued up on Asthma.
The ambulance crew are you saints. Yes i can very much see that. Totally.
I wasn't aware some of them work privately.
I used to volunteer for the Red Cross going into a stroke hospital and mental health hospital offering free massages over the clothes while sat in a chair. I have fond memories of doing that.
Yes any help any words we offer or any smile, joke is wonderful to receive and offer.
I don't think i have Polyps. Or i didn't when they have looked up there years ago.
I was prescribed Antrovent nebules last week. I took on in with Ventolin nebule into nebulizer 9.30am by 1.30pm afternoon my stomach was in alot of discomfort until 10pm that night.
I haven't taken another Antrovent nebules since again. That really wasn't nice.
I was also given Fostair combination inhaler the next morning. I took 2 puffs in the morning and i felt some chest pains very shortly after, which was worrying. So i stopped taking Fostair.
I saw the doctor and told him my reactions to the new medicine, and i also phoned Asthma nurse at Asthma.uk both told me to stop taking them. Asthma nurse suggested i ask doctor for referral to see Respiratory specialist in Swindon. So i did. He agreed. He also let me try taking 'Montelukast' 10mg 28 tablets.
I've had it since Friday just gone, but i'm afraid to take any. As i'm only meant to take it at night. And i don't want to end up in A and E incase i get a bad reaction.
Now weekend is over i will take one tonight. And hope for the best.
The pharmacist in my small town i know her we both used be part of a local Ramblers walking group. so she's always happy to see me and ask me how i'm getting on. She wants me pop in this week to pharmacy to let her know how i'm getting on this week. She's a caring woman.
Steroids finished on Saturday, so i'm just on inhalers Qvar back on again as no reaction to that. And Ventolin inhaler, oldie but goodie through spacers. Have got bit of sore throat from taking them, but washing mouth out helps they say with that.
Thanks for advice about red wrist band, they put one on in A and E. Good advice for the operation on knee. Thank you.
No penicillin for me, or most other antibiotics...
My stats i do at home seem to be keeping the same, SpO2 98, pulse 82. Peak Flow ranging from 310-380L/min.
I haven't nebulised myself since Thursday.
The sun is out this morning so far, and i can hear the birds chirping. They are waiting for me to give them their breakfast.
I've just been reading over your replies. And i've been looking at "Churg Strauss Syndrome/EGPA".
U -Tube has alot of "Extraordinary Vasculitis Stories" of people with it and sharing there stories.
But i was watching this video more to understand the CSS condition you have.
youtube.com/watch?v=dE7aS-H...
Also thank you for the Breathing exercises.
I used to focus on doing "diaphragmatic breathing " when i was going to Yoga classes years ago, and meditation practice.
I have slipped out of those healthy practices.
I shall do it.
Becky
Many apologies. Just had a few gremlins. I read your message yesterday then washing machine broke. The pump got blocked. Tried to fix it, tired and not thinking, flooded the whole kitchen. Not once 3 times! No mop, had to use loads of bath sheets. Ha!Ha! Whole bath full. Realised how bad my breathing is then. Weird, we do not realise, we get used to it. Luckily got a Respiratory appointment in next 10 days. Well I fixed it. It was a new door mat I bought, says washable, the old ones I have were fine, this one decided to shed loads of cotton and block the machine. My dog thought it was great, lets go paddling mum. So I am shattered today and the pain. The fun. Hubby comes home ********* not saying! Ha!Ha!
Lots of Ambulances are fun privately now, these men/woman also work the emergency ones for the NHS. Feel for them. They work too many hours. One lady broke down in front of me 19 hours she had worked, she lived 100 miles away, she then gets a call wanting her to go another further 80 miles pick up a patient take them to the hospital. She left. She needed the money but she was too tired. She was scared she would have an accident. There is no limit for Ambulance Drivers to the time they work. It was lifted a few years ago as there is/was a shortage of ambulance drivers. Its dangerous, lorry drivers etc have limits, ambulance drivers do not. So I feel for them.
How are you now? Are you having the operation, did you phone?
Have you tried the Montelukast yet? Its extremely rare that you have reactions. I get reactions to any medications and food. Had so many attacks, luckily mainly in hospital.
Oh I love the countryside and wildlife too. Its kept me going all these years. I used to be called the Squirrel Lady, Ha!Ha! I live in a town, but had loads of Squirrels coming to my Garden to be fed, I did it for years, bought them raw Peanuts, bags of them. They never dug up my Garden, they did my neighbours, so I told them, feed them and they won't it worked. As I worse and many stays in hospital they drifted away, but I do feed the birds. I have a little tiny old cottage in Norfolk, in the middle of a field, even the locals don't know its there. Brilliant. These past 5 years I have missed the birds emigrating. The sky goes black when they leave and the noise, OMG! the noise, its brilliant. I am stupid over animals. I have, I hope they will come back, House Martins we had 3 nests in Norfolk this year, I missed them going. Oh they are wonderful birds, their nests in my eaves, in my bedroom. Oooooo I wake up hearing them chirp when they are nesting. The babies ooooo their little mouths and noise. When I was young we used to have in excess of 20. Recent years only one, now 3 thank god. So yep mad about animals. Keeps me alive. I have had Kestrals and their baby on my fence by my kitchen window and that is in town, also had a deer!
I spoke (typed) with my Canadian Friend (an x-nurse) she said they do give nebulizers, her daughter just got one in the past month. The whole family have Asthma now. She lives in the really outback of Canada, she is snowed in at the moment, she lives on a farm. She has snow drifts the lot, hard life, but whole family have asthma. Luckily the cold does not affect their Asthma, it does mine. She will look up for the exercises, the whole family do it. Her daughter managed to keep off nebulizer for years, but she has got worse.
Please try to see a physio who deals with Asthma patients. In Canada they do this.
Best Wishes.
Hi Mitz. Thanks for your reply. You have had a time of it with your washing machine breaking down. It looks like we both have a love of nature. I love chatting about nature, and sharing stories and love of nature, as well as asthma and aliments. If you wanted to chat as well as nature isn't asthma related (although it totally is, with the pollen allergies), here is my email address. mason-becky@sky.com
I will send you an email as you gave it to me before.
I always carry a scale with me so if the wind appears I pull it up to cover my nose and month and prevent the wind getting to me I only put it on loosely .
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