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I have one and truly love it. I have e Rescue Med unit with a humidifier attachment. It is extremely quiet and I use the nasal pillow system instead of a traditional mask. I never realized how bad my sleep was and what impact it had till I got this. I like using aromatherapy scents with it. A little Lavender oil on a cotton ball by the filter intake does wonders. Good luck and keep an open mind!

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  • 2 months later...

Kim,

I was just diagnosed with sleep apnea a couple of weeks ago and am awaiting delivery of a PAP machine. Four weeks of an APAP first then continuing with that machine or changing to a CPAP. Have you been able to adjust to your CPAP machine and have you found there to be any symptom improvement ? I haven't seen many posting of others with sleep apnea here but did notice a mention that 30% of dysautonomia patients have this disorder. I hope you are realizing some symptom improvement with your CPAP therapy. I'm sure I will give my husband and kids a good laugh as well when they see the contraption on my face. Lol.

Mark,

I hope you are continuing to do well with your sleep apnea therapy. Your success with it is encouraging to me. At this point I don't quite know what to expect. I'm guardedly optimistic I guess.

Janet

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Hi Kim,

I'm so glad CPAP has helped, at least to some degree. I can't imagine how difficult it must be to deal with a feeding tube and CPAP going at night. Obtaining any kind of consistent restorative sleep seems so illusive. You certainly have immense challenges to overcome in general. Your fighting spirit and attitude are an inspiration to me. Thank you so much for your response. I'm actually still waiting for a call from a medical supply rep so I can receive my machine and use instructions. I'll let you know how it goes.

Janet

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Thanks Janet

I guess I only have the option to fight and keep my head up at this point with two children who rely on me. I do have my down days and just seem to becoming out of a five month flare up after my j tube placement. You made me smile with your kind words.

Thanks

Kim

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The Lavender will actually help in falling asleep as well as some herbal sleep remedy's, but stay away from melatonin based one because they can affect your POTS. I use L-Tryptophan based one's when I need them. I have also noticed now that I sleep sound and dream that some dreams will trigger my fight or flight response and actually wake me up. I forgot my night time dose of Metropolol and had a especially vivid dream and woke to find my pulse trip hammering. I increased my night time dose from 27and 1/2mg to 50mg ( with my Dr's consent) because I found it helped me wake up fewer times during the night.

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Hi Kim,

It makes me smile to know that I made you smile. Thank you for sharing that. I really don't think its possible to not have any down days. I try to stay as upbeat as possible but with every set back or new diagnosis I find an associated mental adjustment period, regrouping and down days which eventually resolves.

I hope you are doing better with your j tube.

Janet

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Mark,

That's very interesting about your aroma therapy success and herbal sleep remedy cautions. For myself I am so sensitive to fragrances I'm not sure if I could tolerate it but I will have to give it a try. The change in sleep cycles and dreaming more that you describe have been concerns of mine as one could certainly expect a potential marked sympathetic response to unaccustomed dreaming. That's great that a beta blocker increase has helped that problem for you. I still don't have my PAP machine so I don't know what kind of problems I'm going to encounter yet.

fkrizanek,

Welcome to the forum. That's great that you have found a sleep system that works for you. I love music. I have never thought about wearing earphones and listening to music as I go off to sleep. I may have to replace my earplugs with something like that. Have you realized any symptom improvement since starting PAP therapy ?

Thanks to all. I really appreciate hearing about what is working for others.

Janet

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