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breathing problems solution?

Messages
65
Location
Uk
Hiya I have been experiencing a lot of breathing trouble lately. Which I've heard being referred to as air hunger on here.

Today I thought I was going to have to seek medical attention. But thankfully it resolved itself after a while.

I was involuntarily taking in a big gasp of air after every few breaths. Usually I feel like I'm barely breathing and having to work extra hard to get the oxygen. Sometimes it may only last for short periods of time, but sometimes it can go on for hours.

Anyway I was just wondering has anyone used a nebulizer at home along with saline before, to help when they have difficulties? Or does anyone else have any suggestions for something to help?

Many thanks :)
 
Messages
15,786
@jules78 - I gasp when my pulse pressure gets low and I'm not getting enough oxygen circulating in my blood for too long. Usually the gasping starts after I sit or lay down, even though it was the standing (or sitting with my feet down) which triggered the problem.

Can you catch your breath after a bit if you lie down? If so, my guess would be orthostatic intolerance. If so, the "cure" is to be upright less, or at least keep an eye or heart rate (will rise) and oxygen saturation (will drop) with a finger pulse oximeter.
 
Messages
65
Location
Uk
Thank you @Valentijn that's makes sense, as it came on today after I'd woken up. I'm not sure if that's what caused me to wake though, or I just woke up naturally.

When I'm feeling like I'm short of oxygen and having to work harder, lying down feels worse. I tend to mostly be laying down or a little propped up it not too much. I can't sit up for long. The only thing that feels a bit better is if I stand, but I can't do that for long :-/

Do you use anything to help you, or do you just sit propped up and let it run its course? x
 
Messages
15,786
Thank you @Valentijn that's makes sense, as it came on today after I'd woken up. I'm not sure if that's what caused me to wake though, or I just woke up naturally.

When I'm feeling like I'm short of oxygen and having to work harder, lying down feels worse. I tend to mostly be laying down or a little propped up it not too much. I can't sit up for long. The only thing that feels a bit better is if I stand, but I can't do that for long :-/

Do you use anything to help you, or do you just sit propped up and let it run its course? x
I use the pulse oximeter a lot. Mine also showed me that I have much better oxygenation when laying in a certain position - in my case, my left side, though a lot of people need to lie on their right side instead. Laying on my back is very bad for me, and even leaning back when sitting up causes problems. So I tend to sit cross-legged on the bed or couch, leaning forward a bit. Very slouchy!

Yohimbe and Strattera have both helped with my pulse pressure. I usually just take it during the day, but if I have pulse pressure and oxygen problems even when lying on my good side, I'll take an extra dose so I can get my heart rate low enough to sleep.
 
Messages
65
Location
Uk
Thank you for the great advice :) I have just order myself an oximeter. As I did think this might help me to keep an eye on things.
Was the medication you mentioned prescribed by your doctor?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I've tried Singulair. I think it helps me feel like the air I'm getting has more oxygen in it so I don't feel as fogged. Mine is usually when I'm really tired.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I told my doc what was going on and asked for it. She was fine. It turns out the problem I wanted it for was a reaction to a medication I was taking, (I know right?) but I like to have it around to experiment with.

I should have taken some this morning. I'm paying for making a bunch of phone calls yesterday afternoon.
 
Messages
65
Location
Uk
I may ask to see a different doctor @minkeygirl as at my last appointment.

I asked him if I could be prescribed some painkillers, as I get terrible headaches. He asked where the pain was, I told him the one side of my forehead.

He said they sounded like tension headaches and told me to massage the back of my neck.

That's all well and good if I catch it early enough, but when I'm in so much pain with it that I don't want to move my head. Rubbing my neck is the last thing I want to do!!! :mad: Lol
 
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minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@jules78 I hear you. Docs don't even want to take the time to think about what you are saying and if what they say is even correct. If you can find a doc who listens that is great.

I know a place where you can get codeine with aspirin or tylenol for pretty cheap without an RX. About $35 US with shipping for 30. PM me if you want it.

Sometimes we just want drugs!
 
Messages
15,786
Thank you for the great advice :) I have just order myself an oximeter. As I did think this might help me to keep an eye on things.
Was the medication you mentioned prescribed by your doctor?
Yohimbe might be available over-the-counter, or with a prescription. It's different in different countries, even within Europe. It's not available at all in the Netherlands (though it should be, by prescription), so I just bring some back with me from the US when I visit.

I got Strattera in the US by asking my Naturopathic Doctor to prescribe it, based on the suggestion of another patient here, and eventually my GP prescribed it here in the Netherlands where it's much cheaper. She assumed it was an amphetamine at first, since it's an ADHD medication, but it's really just an NRI.

Each drug basically counteracts the effects of a gene (ADRA2A) that gets up-regulated in ME patients after exertion. The Yohimbe directly represses that gene, and the Strattera compensates for ADRA2A repressing norepinephrine. So the Yohimbe seems more helpful with symptoms in general, but the Strattera also worked fairly well for my OI specifically.

I did 10mg Strattera three times per day. Now I do 100mg Yohimbe (which is about 2mg Yohimbine) twice per day instead.
 
Messages
15,786
I asked him if I could be prescribed some painkillers, as I get terrible headaches. He asked where the pain was, I told him the one side of my forehead.
Have you ever tried high EPA & DHA fish oil? The omega 3 fatty acids are anti-inflammatory, and 2 or 3 grams per day keeps away my brain-crushing headache. It takes about 24 hours to start working.
 
Messages
65
Location
Uk
No I haven't tried those @Valentijn . But thank you, will ask about those in the health food shop here.

I'm so pleased I found this site as everyone's so helpful. The doctors been pretty useless at offering advice or explaining things.

And it's baffling at times. I'm still some days still trying to come to terms with the fact, that I went to bed pretty fit and very active.

Then woke up not having enough energy to even reach for my cup beside me, when I'm in bed at times x
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Thanks @minkeygirl I will ask the doctor. But he just doesn't seem that helpful :confused:
I had to go through a lot of doctors before finding the more helpful ones, especially for primary care. If you are in a location where you can do that, I would encourage you to keep looking for a helpful doc.

With medical care I had several different lung problems identified, some related to my ME and one not. They also checked my heart.

I hope you are able to find out what's wrong and get some appropriate treatment.
 
Messages
65
Location
Uk
Thanks @WillowJ do you think I will have anymore joy at the CFS clinic, as surely they must take you more serious there? Or again is it down to finding the right person
 
Messages
10,157
@jules78 I hear you. Docs don't even want to take the time to think about what you are saying and if what they say is even correct. If you can find a doc who listens that is great.

I know a place where you can get codeine with aspirin or tylenol for pretty cheap without an RX. About $35 US with shipping for 30. PM me if you want it.

Sometimes we just want drugs!

Please note, if a medication is only available by prescription, then it is illegal to order it without a prescription and if you do so you could be putting yourself at risk.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
The place I was talking about has an online form you have to fill out. Then a doctor on staff reviews the form and based on the information can approve the order. Canada does this all the time.

I meant an RX from a personal doctor. And BTW, I'm willing to take a personal risk to get a medication I might need and can't get because of poor medical care.