weakness with bi-pap machine

[beverly rees]

I have posted a few weeks ago about my husband having trouble with the bi-pap machine. We have worked out the settings and the mask problems. However, the more he uses the machine he is experiencing weakness. He also had the same problem with the rilutek medication. Tried it a few times and was very weak within hours of taking the medication so after two attempts discontinued using it.

We would like to keep working with the bi-pap because from everything I have read on here it has been successful for most people once they have adpated to using it. Most people report feeling significantly more energized. Has anyone else had the experince in the beginning of feeling weaker the more they use the machine? Thanks for all your help. Bev

 

[brooksea]

Beverly,

Sorry your husband is feeling weak. Is he feeling exhausted or is it muscle weakness you refer to?

My husband uses the BiPap. We find that if he takes it easy, does not exert himself or stay up late and then uses the BiPap at night that he will have near normal energy levels the next day. Most of the time he cannot do this, as he is not one to sit still. He has always been a hyper person.

From what I understand this just goes along with the disease. Your husband could be a pALS with hypermetabolism. The neuro told us that pALS bodies are "running a marathon" while at rest, that is why weight loss comes so easily and dangerously.

My husband takes methyl (generic Ritalin) when he really wants to get something done, but he pays for it the next day. Unfortunately, a side effect of Ritalin is curbed appetite. Sigh... There are other medications that may help. I know there is one that some take off label that is meant for Narcolepsy. Can't remember the name of it at this moment.

He may need to get with his doc to see if there is a medication that could help him that doesn't have a lot of side effects.

Good luck! Hope he can get some energy back and keep using the BiPap!

 

[GlenBrittle]

Hi Beverly,

I can offer a different spin , but it is only my opinion.

I do not use a BI-PAP machine yet so its only speculation from me. What I do use is a CPAP machine, due to sleep apnea. I have had this machine for 7+ years now , way before I was diagnosed with ALS.

If your hubby is run down , the BI-PAP may take a while to perk him up. I was told this with my CPAP , it took me about a month to regain some energy.

The best thing is to ask a doctor. Tell him to not give up , keep trying. If it doesn't work one way , try another. And take some naps. Yeah , I hate them too.

Best wishes to feeling better.

Glen

 

[hopingforthebest]

bipap

Hi Beverly

My husband is on bipap 24/7. When he sits and is on bipap he said it is wonderful.

Going to bathroom (disconnecting bipap) and back to his sofa, he is exhausted without the bipap.

He has described being off the bipap for any significant amount of time like having a plastic bag over his head.

Again, as I posted previous, at his ALS clinic visit last month, R.T. told us they had patient 13 years on bipap. I am praying my husband to have years on bipap before intervention is needed. Do not have any idea if this is unrealistic but hoping and praying for this. Keep saying God is bigger than this ALS disease and so far, has been 1 year for my hubby on hospice and he is doing okay.

Good luck

Patty