Still very shaky with Bipap

[LONGSAM2]

Hi All, I promised to report back on my progress with the Bipap. Even with 1 mg.of ativan I was still anxious but slept three hours the first night, four the next and five last night. Now, pulmonary doctor says I can't use ativan because it relaxes the muscles too much. So he prescribed Xanax.25 a much lower dose. Will give it a try but am not feeling good about it. I was surprised because so many PALS use Ativan. Why can't anything go smoothly for a change. Will keep you updated on progress. Sharon

 

[Al]

I use 2 mg of Ativan and felt the need to up it recently but the doc wouldn't go for it unless I wanted to off myself. He said he wasn't comfortable letting me take more than 2mg with my breathing issues but the 2 hasn't killed me yet so for me it must be OK. Guess I'm just a tough old bird.
AL.

 

[CindyM]

Hi Sharon- you are right that things shoudl go more smoothy for you. With everything else you have to deal with, too! Stay strong. We have faith in you! Cindy

 

[anne]

hi Al....You mentioned your breathing problems. Just wondering what type of breathing issues you are having. Two days after my mom went to Sunnybrook she started with breathing problems. Especially on exertion she breaths really loudly and gets out of breath easily. It came on her so quickly that we had to take her to emerg last Thursday because she was just unable to catch her breath and was going into a panic attack. Thankfully I was able to move her sleep study up from August 8th to last Monday. My mom told me she had the best sleep she had had in a long time during her sleep study. I was surprised that she did not have another breathing test at the clinic at her last appointment. She had had one three months prior. So now we wait for 4 to 5 weeks before getting the sleep study results. For now my mom has to take it easy and rest in between. This is all too frustrating for her. Anne

 

[LONGSAM2]

Thank You Cindy and Al for your support. I also have emphysema which I guess worries the doctor about the Ativan but at this point I don't know if I care about the risks. But I will give the xanax a try tonight. .25 seems like such a low dose. Wish some of these docs could experience some of our problems and anxieties. Will keep in touch. Sharon

 

[Al]

Hi anne. I've been on a Bipap since Jan.05 because I couldn't breathe lying down or even reclining in a lazy boy. I got winded with exertion as well and on stairs. My FVC was 80 % in Feb. and was down to 62 % at the May 29th appointment so that's not too good. I have a sleep study coming July 17 so we'll see what that says. It makes you wonder that with the fancy computers today it still takes a good month to analyse the sleep data but that is normal.
AL.

 

[anne]

Thanks for the info.....my mom breaths well when reclining on her chair or sitting up. When laying down for bed she needs to have several pillows. I have been trying to get her to get an adjustable bed but she has not agreed to that yet. She really does not like changes which there has been alot of over the past year. Take care. Anne

 

[Al]

ALS Society of Ont has loaned me a hospital bed which is a godsend for sleeping. Try to talk your mom into it. She'll be glad she got it.
AL.

 

[nspoc]

Hi Longsam2 -

Don't worry about the milligram differences in Ativan and Xanax - they are not equivalent. The doctor might have ordered Xanax because it has a much shorter half life - doesn't swim around in the body as long in case you do get into trouble.

I used a .25 mg. of Xanax cut in half as my dose to get over fear of flying and it worked so well I did not need it after 3 flights. Try the dose and see what happens - it might work very well for you and your particular chemistry. Just remember - the dosages are not the same for the two medications - so you cannot compare by number of milligrams. That is not a drastically lower dose than 1 mg. of Ativan - certainly nothing like a quarter of the dose.

Also - I want to commend you on your progress so far - you have nearly doubled your time in 3 days - that is great.

Also - check with your pulmonolgist and see if you have the correct bipap rate - sometimes adjusting it makes a huge difference.

Good luck - and try to relax about the Xanax - many people find it quite effective.

Beth

 

[CindyM]

I want to commend you on your progress so far - you have nearly doubled your time in 3 days - that is great.

Thanks for reminding us, Beth, that when trying something new it is a good idea to compare pur progress from where we started, not where we hope to end up! i always forget that handy little tip. Regards, Cindy

 

[anne]

I am sure there will be a time sooner than later that my mom will need an adjustable bed. The Als Society of Ontario loaned us a lift chair. I had alot of problems having it delivered as they kept on calling my mother to confirm the delivery even after they had arranged the delivery with me and were told on numerous occasions not to call my mom because she cannot speak. In all fairness it was the delivery company that was messing up not the ALS Society. Anyhow after getting the chair and having kept it for three weeks I now have to arrange to have them pick it up because my mother really needs the chair with the third position. With the weakness in her neck she requires to be reclined in a further position so I went out to buy her the chair which she is very happy with. When she finally agrees to an adjustable bed I will go out and get her one. She does not want a hospital bed and I think this is why she is resisting. There are companies that have adjustable beds that you can use your own head board and they come in all sizes. Take care. Anne

 

[LONGSAM2]

Still shaky with Bipap

Hi Beth,......thank you for your comments and information about dosages. I was not aware how it worked. Tried the xanax last night. Finally fell asleep after an hour and slept for three hours. Boy, the ups and downs. Will try again tonight. I'm not giving up. The RP is coming tomorrow so I'll have him check everything. Thanks, Sharon