Does anyone else get this?

BeeThere

15 Apr 12

5:29am

Hi guys,

I haven't been around in a long while, but I supposed my asthma was O.K. for a bit, or at least I had other health and life issues to deal with! And then my doctors have been giving me a bit of the run around with some of my symptoms, but I'm convinced they are asthma related. Then it dawned on me a day or so ago, that you guys could probably at least tell me I'm not a freak!

So anyways, this year my asthma meds had been switched around a bit, so I'm actually on less medication, though still more than any other asthmatic I know in person. I've also been newly diagnosed with arthritis, so between bad breathing and bad arthritis, have been on pred., have been on 4 1/2 months of pred. in the last 8 months. Meanwhile, I used to take what I think you call seretide, with the LABA and steroid inhaler in it. This year I've been taking zirlukfast as usual, flovent 220, 2 puffs twice a day, and then ipatropium and levabuterol nebs, or inhalers, as needed. When I''m sick I really do use the nebs, but haven't figured out a good way to use them at work due to how busy work is. So I use my inhalers there, but I don't think they work as well.

So, I've had many asthma attacks this year where I go from being just fine, to feeling like someone is squeezing my windpipe. Then two puffs of inhaler often doesn't work, so I take four. Around 30 min. later when I'm starting to feel desperate, it finally will lift up a bit. But I still have that tightness sometimes for another 3 to 5 hours. My lung doctor really didn't know what to make of this, but it happens all the time. He's also very relectant to put me on more inhalers, as he says he's never heard me wheezing. Well, unless I'm half dead, I don't wheeze! I cough myself senseless or get chest pain, but only wheeze when I'm really sick.

So I was just wondering if anyone else has experienced this and what you do. I guess it happens two ways. One way this kind of attack will happen daily, which is when I call and get pred. Another, it just mysteriously hits about twice a week, and then I don't know what to do, as I generally feel fine the rest of the time. Grrr.

Bee

Replies to: Does anyone else get this?

islandmedic

19 Apr 12

1:54pm

Hi Bee

talking of asthma symptomsin the Lloyds Pharmacy leaflet about asthma (their current campaign) the first symptom of asthma is cough.

BeeThere

19 Apr 12

11:15am

Gussypoo,

I understood what you meant! I get blurred vision sometimes with the pred. and it can be very frusterating.

Katharine,

Yes that annoys me too! I hardly ever wheeze. I never have either, except when I'm about to like keel over. It does seem odd...I think my allergist, who is terrific, said to me once there are several asthma symptoms, and one of the most common is cough. So I don't know what all the confusion is sometimes, but I've definitely dealt with that.

I'm off to work after having used my neb. Hmmm...I'll let you know how my day goes.

Bee

Gussypoo

18 Apr 12

7:57am

Tj ... Think the others where responding to your post asking for clarification on my post ..... I'm in agreement with the others ... It appears obvious what I meant.

tj

17 Apr 12

11:01pm

As I said before, the issue was not about neb meaning nebuliser just me checking what was meant. Yes, there has been some misunderstanding. Not everyone will know what a neb/nebuliser is either. Not sure why posting from a phone was mentioned not being part of the initial discussion?

Of course, people shouldn't be put off posting with literacy or computer/phone issues. However as always posts should be read before submission to the forum to check not hard to read or understand at times with text speak etc.

Now with moderator hat on. This is getting off the original discussion, please can we all return to the original topic?

BeeThere, how are you today?

FeeJay

17 Apr 12

10:47am

Hope you feel better soon bee. Off topic but yes Chris I agree it's very hard using the site from a phone. Particularly when the predictive text changes words or grammar you put in. I also am familiar with the abbreviation ""neb"" and would have thought from the context it could be easily inferred that gussypoo was asking a question? The phone just missed off the question mark at the end. Wouldn't want anyone to feel they couldn't post if they have literacy issues or a phone playing up....goodness over the years that would exclude a lot of members. Just thought I'd add my two pennorth.

woody-som

17 Apr 12

7:44am

TJ, I'm unsure what you were asking gussypoo regarding the use of the word 'neb' all of us who are familiar with nebulisers shorten it to 'neb' even doctors that I know. As far as I can see their shouldn't be any doubt what it refers to.

Also usin the site on phones is very hard work.

tj

16 Apr 12

7:58pm

Sorry Gussypoo, thanks for your post. That's the problem as writing on message boards is different to the spoken word and easy for misunderstandings to occur. I didn't mean neb vs nebuliser, just wasn't sure what you meant i.e. if you were asking a question or stating nebs should help? As I said may be me misreading too.

Doesn't sound like you're having the best time, can't be easy with blurred vision from steroids and blood sugars.

Anyway BeeThere, sorry for diversion off your original thread.

Gussypoo

16 Apr 12

2:34pm

Sorry for my grammar and spelling mistakes to everyone who had a problem reading and understanding my replies, unfortunately been having blurred vision with the steroids and blood sugars . the spell checker ain't helping .. But Yes I meant nebuliser when i said neb's... Excuse my ignorance as i thought everyone used this term . as a few other replies after me use the word neb instead of nebuliser ...

tj

15 Apr 12

9:46pm

The new forum will be in the same place but will change from this Thursday coming. All posts/messages from Friday backwards will be ported over. Have a look here for more info 'General forum > Forum and website changes - Asthma UK and moderator message - please read! *update added*' tinyurl.com/d6ofqhl

Good luck with the new job, sounds good. On a related note don't think there are many such positions in the UK.

Remember if you need the meds, you need them and consider the impact on yourself and your work if you are not feeling 100%. By all means, use your nebuliser discreetly if you prefer that. Not sure what spacer you have but there are small spacers that fit in most bags as well as large volume spacers.

katharine

15 Apr 12

5:58pm

have to say its very annoying when people esp professionals seem to think you have to wheeze i know that on the odd occasion when in wheeze at least i can breathe usually i just get silent chest with nio wheeze or if there is a wheeze its ionly heard via stethascope notb audiable. last tinme i had grren men after flying they kept trying to tell me i was having a panic attack and hyperventerlating as no wheeze but 15 min later in a ane sats sittingb at 93/94 despite nebs hydrocortisone/magnisium etc, at my last review with gp prac nurse she said as opf so awful to neb am and pm the use seritde and flixotide as i have both and then top up with bricanyl 2 puffs after have to say it does make thing slightly easier in day. so if you have nebs try using them then having inhalers after once airways open and see how goes

BeeThere

15 Apr 12

2:25pm

Thanks everyone, you're the best! So I don't want to miss moving with you...where do I connect to the new forum?

I'm sitting here using my nebulizer. So lets see...yes the nebulizer seems to give me better relief than the inhaler versions of levabuterol and ipatropium. I'm doing well after the heart, trachea decompression surgery. However, I still aspirate occasionally, and it's been about 1 year 2 months since the surgery, so a swallowing therapist had recommended to see about getting my esophagus dilated, as it is a bit narrowed. However, my cardiologist said to wait one more year to see if it gets better on its own. From vascular rings, that does get better on its own, but since I was so old when they fixed it (compared to little children!), it's a bit of a mystery how long these things take.

Anyways, I've actually tried taking seretide this week instead, and it did help more than just the fluticasone, but less than the nebs and such. So this morning I'm back on the nebs. They take a bit longer, but seem to help more. My peak flow does fall, especially in the mornings. My lung doctor did say something about cough varient asthma when I last saw him, so I think I need to keep reminding him that he thought of that. Meanwhile, my rheum. actually just had me tested for a hereditary immune deficiency, which my allergist doesn't think I have, and she has seen 9 years of these attacks so she should know. Then in the middle of that I had contacted another pt. support group, as I used to work with a pediatric infectious disease doctor, and he mentioned this other rare thing that can go along with heart defects, and my aorta being on the opposite side of my body to most people is a risk factor. Basically the little hairs in lungs, sinuses, and ears don't work right, so the mucus just sits there and creates havoc. So I'm going to be tested for that in a few months too.

I actually have two asthma doctors...one's an allergist who has known me for forever, and the other is my pulmonologist who keeps scratching his head as I had a negative methacholine challenge test, which is correct in 90% of the cases saying you don't have asthma. So...I'm sort of stuck. But I think you're right, and I need to advocate for what I need. The odd thing about the attacks at work, or when out because it's happened at church and in a restaurant too, is that the inhaler does kick in pretty decently most of the time, so I don't go to the ER. But then I think you're right in saying, I've been wondering if I need to go in earlier. However, since I'm not wheezing when at the lung doctor's, he's always telling me it's O.K. not to go kind of, which is really confusing! But I had another lung doctor who was a complete idiot and told me the same thing, and I almost died a few times it was so bad. So I think I should just go by my own instinct on that, of course with a bit of encouragement, as I hate going to emergency!

And one more thing, I actually just got a new job working as a pediatric oncology social worker. I wasn't really looking, but my friend's supervisor was complaining that she couldn't find anyone, and my friend thought of me as I used to work in peds. Anyways, the job is a ten minute commute, as opposed to an hour, and the head of the department trained my past supervisor at another job who was terrific. So I think it will be really good, and more reasonable than my current work place. Also, I do have a travel neb. but it's a bit loud. I'm thinking of replacing the parts to an older neb. I have that's almost silent. I do use a spacer, but am a bit shy about it because it seems to freak my co-workers out when I ""need to use it."" It does work better though. Also I carry a small purse with me when I'm out on the hospital floors, so the spacer doesn't fit.

Bee

tj

15 Apr 12

12:52pm

Hello BeeThere and welcome back,

First of all, have you seen the posts that the forum will be relaunching this week? Recent posts such as this may not be carried over.

Seretide is Advair in the US I believe? Flovent is the Fluticasone or Flixotide steriod element. Atrovent is a brand name for ipratropium.

Anyway, it seems you are seeing your doctor about this but perhaps best go back and maybe see another. A lot of people here also have problems with no wheeze and doctors.

Do you have a spacer to help with inhalers? Also in regards to work, have you tried a portable nebuliser which are often quite quiet and discreet?

Gussypoo,I may be misreading but not sure what you mean where you said ""When having An attack how does the Neb help ."" Are you asking if nebulisers help?

TJ

Philomela

15 Apr 12

11:26am

Hi Bee, welcome back!

I don't know if I can help, except to say that I don't think you're a freak as this sounds a little familiar! I don't get it in the same way, but also find I have episodes where the inhaler doesn't seem to be working so I take loads and FINALLY it works, but doesn't go away entirely (I feel like it never quite goes away entirely though I do have good days where it doesn't really bother me). Do you take both the Atrovent and Ventolin when this happens? I find the Atrovent's generally more effective for me, though both together are even better; 30 mins is about the right time for the Atrovent to be kicking in so wonder if it's mainly that, if you are taking it.

I find if I don't take the Atrovent before bed I don't sleep well; I'd need to take vast amounts of Ventolin before it helps as much. But I take it at the same time as Atrovent for quick relief, and the combination seems to help more, then I'd take more Ventolin in between and that seems to help a bit more - but I always seem to need a lot of Ventolin for it to do anything (I had reversibility testing which showed nothing but they only gave me 2 puffs of it which I suspected wasn't going to do much). Have you ever had this when you have used the nebs? Did they help more?

Anyway sorry for rambling, just wanted to say you're not alone though not sure what you can do about it! Are you at all able to document PF during one of these attacks, to show your dr and maybe convince him the lack of a wheeze doesn't mean nothing's going on? (I so hate it when they get hung up on that one...).

Sorry to hear about the arthritis! Hope things are ok after the surgery though that you had on your trachea/heart.

Gussypoo

15 Apr 12

8:14am

If your medication fails to help during an asthma attack you seek emergercy attention from gp or a accident and emergency department.

if your meds are not lastimg the required length of time and or you are using more of the blue , you should have a review by your gp .

You should discuss your asthma with your manager And the need to take your nebuliser at work . By using at work you may get better relief and better control .. I take my neb anywhere as i rather have a neb than have an ambulance called out ... When having An attack how does the Neb help .