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Still struggling advice please !

Ok this could as long as my arm but I’m going to try and keep it as short as possible.

All started with blotchy skin back in October 2018. When ever I touched my skin anywhere on my body it goes all red and blotchy for about 20-30 mins.

Couple weeks later my skin started being really itchy, I would get pimples and bumps along with blotchy red patches when itching.

Week later I get a cold. Towards the end of my cold I started developing breathing problems.

As soon as I laid down in bed I would find it really hard to breath! Felt like I couldn’t take in enough air.

Over the last 5 months it’s got worse and worse.

I have a irritating cough upon waking in the middle of the night ! Only starts in the evening and night, I wake 2-3-4 times a night coughing and finding it hard to breath.

Medication that I have been on since October last year !

Started with blue & brown inhalers

Went into fostair 100/6 and blue

Went into seretide and blue

Went into symbicort 200/6 dry powder inhaler

Had prednisone steroid a few times (did absolutely nothing)

All lung tests, chest X-rays, blood tests fine

We even tried anxiety tablets no joy

My consultant appointment has been brought towards to next week.

At present I am going through 2 blue inhalers a week (52 puffs a day) and 12 puffs of symbicort a day

I’m hoping the consultant will be able to prescribe me some “add on meds” to my daily routine and find the cause of all this!

I’m tired ! Frustrated, annoyed that this has been going on so long uncontrolled! It’s affecting everyday life for me!

Could it be Ashma or another condition which is going un-noticed. It’s been 5 months of hell and I don’t think I can take it much longer.

Last week I woke up with chronic cramp in my legs ouch, some times my veins feel like they are popping out the bottom of my foot

16 Replies
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Hello Splurge, I can understand that you feel frustrated, special when nobody told you what you got. I am surprised that after 5month time no one is able to tell you what you suffering from. There are different types of asthma.

It's sounds like you have an allergic reaction to some of the medication you take. I hope that you will get some answers when your appointment is due. Stay strong and safe, don't give up! There will be an explanation for it don't give up hope honey!! You take care and all the best!! That you will get better again!!

🌺🌺🌺🍀🍀🍀

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Thanks Melnel

I just feel so let down ! Why have the docs and nurse not got this under control yet !

I have had blood tests for ige and rast test done which are all clear apparently !

I downloaded an app the other day which works with my Apple Watch !

It records when you sleep. I woke up 6 times during the night and my heart rate while at rest/asleep was an average of 95 beats per minute. At one point in the night my heart beat recorded 110 beats per min.

When I wake in the night I also feel so so hot ! My face feels like it’s swollen and red.

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First of all I just have to comment on the amount of Ventolin/Salbutamol you said you were taking, the amount is very, very high. Have you read the leaflet which comes with the inhaler? Are you on any antihistamine, such as Cetirizine and if so, how much? Had any Piriton?

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Do your inhalers give you proper relief from the shortness of breath (SoB), what is you peak flow like when you have SoB? Because it might be silent reflux (LPR), the waking in the night coughing and SoB are symptoms,do you have any other symptoms?

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Hi Simple Simon

I don’t feel any relief which is why I have to take such a high amount and eventually the breathing goes back to normal

I haven’t tried peak flow when sob ! I find it hard to take a breath so haven’t thought about trying a peak flow then. Perhaps I will try that tonight

I get a lump in the back of my throat sometimes but not all the time.

I wee a lot more at night ! Pretty much when I wake up I go for a wee this could be 2-6 times a night.

And obviously I get red blotchy skin which is all the time ! Anytime I touch my skin I come out all red in the patch I have touched.

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Hi Wheezy Anne

No I haven’t read the leaflet ! I should really call A&E when I’m using the ventolin like that in the evenings but the hospital just send me home!

I am in 180mg fexofenadine (antihistamine tabs) I take one tab in the morning

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It sounds like you have microbial contamination in your home that's affecting your breathing and also systemically. It causes reactions just like you're describing. You sound almost like a mastocytosis case, at the least then mast cell activation type reactions. Contamination such as mold, bacteria and virus trigger these reactions.

Quick answer? Go away into a clean environment for 2 weeks and see if things improve. Don't take ANY items from your home because if it's contaminated they'll serve as triggers. This is a difficult task but if it brought you relief you'd have your answers and if when you returned your symptoms worsened you'd really know how to deal with it.

Best wishes xx

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Hi Saassii

Ido actually get it when I’m at work or in the van or out at dinner etc so it’s not just refined to home life. But it’s just worse at home in the evenings and night

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Yes once an exposure has happened, hypersensitivity stays high. The immune system has become sensitized to the offending allergen. Our bodies are smart, the mast cells are part of our defense system I our white blood cells. The immune system can't forget it or the body will die and it's sending signals for survival. Typically the person reacts to lower and lower levels.

I was exposed in my home unwittingly for 3 years with low levels. Then another water damage happened in my awareness, I'd been told by the insurance company that they'd made it safe. 28 days later and I was horrendously unwell including hemorrhaging. Now I react to particularly low levels of microbes. E.g. At the kitchen sink, the microbes in that drain cause immediate wheezing. No water damage is present, but the biofilm in the drain is rife with it. I react in restaurants, near drains outside, to chemicals and fumes now, dirty carpets, anything that can house microbes. But it all started in the home. If you have the most major source there that will continue to escalate and problems everywhere else will continue.

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I would ask for a referral to a respiritory clinic for lung function tests and possibility a CT scan. There are many lung conditions apart from Asthma. I was diagnosed with late onset Asthma in my 50s. After 3 years of treatment not working, tests proved I had Bronchiectasis and I've never looked back.

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Hi Poemsgalore

I have been referred to the respiratory clinic at Poole hospital. My consultant appointment was through them at the hospital.

I have had some lung function tests done already which are apparently clear.

Was it the consultant that diagnosed you ??

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I understand the the Ashma nurse at the hospital is just there for medication and controlling it but who is actually responsible for getting a diagnosis’s? Doctor or consultant at the hospital ??

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Your GP is there to make a diagnosis, but they then refer you on to a consultant if you need more invesigations or more experienced doctor in there specialist field of medicine.

A friend of mine had asthma which was getting worse and worse in spite of medication and eventually he had a scan and they found he had aspergillosis. I'd suggest you keep a note of when you have attacks and where to see if there is any pattern. Also record doctors visits, investigations and treatment, suggested diagnosis. Basically doctors generally start out looking at the most common caused, then widen it out, as your doctor seems to have done. When that doesn't work they then send you to a specialist. The issue is finding the right specialist who can make the correct diagnosis!

CT scan sounds like a good idea. Acid reflux (silent reflux) can certainly exacerbate coughing at night. Try sleeping upright to see if that helps. Do you measure your oxygen levels? You can buy oximeters quite cheaply on line. The rash alongside your symptoms sounds puzzling, but it could be a reaction to the envirionment. Working out when you feel better might help to track down possible causes.

As another member said when your system is already sensitised you start reacting more widely and strongly.

Ige might only be high if you are reacting when the blood test is taken if you were on antihistamines that might invalidate the result? RAST tests are good but what they did they test for? You need to ask for a copy to ensure they covered anything that might be causing your problem. What at night might be aggravating your health? Sleeping position, or environment? Just some thoughts and hope that you find a good specialist to help you. Don't give up, be persistent.

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Yes, the hospital consultant diagnosed me on the CT scan and lung function tests

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Oh ok, hopefully I will have more luck with the consultant then, my appointment was brought forwards for Thursday this week.

I shall give you all an update to let you know what they say.

P.s did you have to stay there for additional tests on the day you saw the consultant ? And did they diagnose you that same day ?

Sorry for the questions I just want to prepare myself for the day !

😁

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The CT scan was on a different day to the Lung function test. I didn't have any other tests except for regular Spirometry. Sometimes at the hospital, other times at my GP surgery.

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