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Karvorka

Active member
Joined
Mar 7, 2011
Messages
52
Reason
PALS
Diagnosis
04/2008
Country
AU
State
NSW
City
New Lambton
Ok here's my question, I was diagnosed with bulbar onset over 3 years ago and the first specialist my neurologist sent me to see after my diagnosis was secondly and thirdly comfirmed was a respiratory and sleep specialist (I assume because people with bulbar onset have a higher prevalence of respiratory problems earlier on than limb onset).

Anyhow I did an overnight oximetry, a sleep study and a pulmonary function test to get a basis to work off for future tests, initially I would go once a month (which is as often as the respiratory clinic is run at my local hospital) to check for the speed of change; not much was happening so monthly turned into 3 months and than 6 months and so on. My last function test came back at 60% from my initial test at which point my doctor said he wants me to start using a bipap to help improve my quality of life but I feel fine, no headaches, tiredness, napping, fatigue. So I'm just not sure why I should use it to improve my quality of life if I feel fine. I have used it in the afternoons for a few hours to test it out but that's about it, what's the consensus ? Is there an unexplained reason why I should be using it other than to feel better?
Thanks
D.
 
My husband had no trouble adapting to BiPAP as he already used a CPAP prior to this for sleep apnoea. However, some people have difficulty getting used to using the BiPAP, finding a mask that they feel comfortable with etc. So getting used to it and doing your problem solving before you have to depend on it may be helpful. Another thing I picked up on is the quality of life statement. That is used a fair bit with BiPAP. As they refuse to do invasive ventilation, the only option in Australia for resp support is the BiPAP, so as your breathing becomes worse, and you may get headaches and breathlessness, the idea is that BiPAP will make you feel better because your decreased resp function is being supported. However, from what I've been told BiPAP is not enough ultimately to support life once the diaphragm gets too weak. Hence it gives you quality of life up to a point, but not ultimately life support like an invasive ventilator would. I should also warn you they love to hammer in the withdrawal of ventilation stuff. I think it should be a choice but they don't present it that way.

Thanks Chris and Shane
 
Hi Denise

I was pretty much in the same situation as you when I started using my bipap. No headaches, no fatigue, FVC 63% - only problem was that I wasn't falling into a deep sleep and would wake up a number of times a night. The bipap fixed all that.

It certainly won't hurt to start wearing it overnight - but if sleeping is not an issue yet and you have no other symptoms - you can probably get away without it for a bit. I would definitely get accustomed to it and try a few trial overnights - there are some fit issues that you will only find out about when you wear it for extended periods. Better to resolve these issues now before you are dependent on it.

You will know when it is time - but at that point you may already be de-saturating a bit. It is a tough call - it may not make any difference to you now - but the MDs will always err on the side of caution
 
Thanks guys for your responses, firstly you might have me confused with the other guy but my name is Dale not Denise and I fully understood your advice and it was much appreciated. It was pretty much what my doctor has been saying for the past few years but I was slightly confused about the symptoms of what justifies as a poor quality of life and when the bipap becomes a necessary daily activity. I have used it intermittently but I suppose I should start using it more frequently, I have bought myself quite a comfortable mask (the quattro fx) and I don't really have much of an excuse except I haven't been really bothered and I'm fishing for an excuse to justify my laziness ^^.
 
Another thing you'll want to consider is that the respiratory muscles can go very fast once they start. My FVC figure dropped 20 points in three months, pre-BiPAP. Other folks have seen declines of 15 percent of normal per month.

Also, using BiPAP at various times during the day will reduce the workload on your respiratory muscles. As the respiratory muscles start failing, they have to work harder to move the same volume of air. Putting the BiPAP on gives them a little help, sort of like a spotter for a weightlifter or a gymnast.
 
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