VES - desaturisation overnight?

General
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Hi

I could not find any search results about possible desaturisation of oxygen overnight caused by VES. So I am posting this info in case other members need help with this.

I knew that I felt dreadful when I woke from sleeping overnight and that sleeping was becoming more difficult for me. Medics could not say why.

So when my jaw expert lent me his own Viatom O2 ring (he wanted to check for sleep apnea), I saw that I had very bad desaturisation overnight.

At this point I had left JV decompression & styloid cut but was awaiting spinal fusion & right JV VES/decompression surgery.

Now I have had my VES surgery 2 weeks ago it is very clear to me that VES was mainly causing the desaturisation as it has improved enormously now.

i did have a sleep study & respiratory tests but they told me I did not have sleep apnea or central apnea. They told me up to 5 drops an hour of 4% is normal & requires no intervention. I was way above that at my worst. Also told brain only gets impacted when desats are below 80%. Over 95% is normal.

While I waited for help I decided to hire an oxygen concentrator to use overnight to protect my brain from being deprived of oxygen. It did improve my desat data a lot. But now I am not having to use the nasal canula or oxygen, which is great.

So if you are feeling dreadful on waking at night it may be worth trying a Viatom ring & seeing desat data on your mobile phone. Doing that & using oxygen helped me out a lot while I tried to get help. D

Ps. Will post another day about big pulse spikes during sleep, a topic in its own right. D

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Upload desat Viatom data from March before oxygen use.

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Thank you for this information @PatientD. This may be very helpful for our VES members!

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It helped me manage VES better. Hope it may help others. Not a cure but mitigates things. For me the lower I can get my resting heart rate overnight, the less trapped abnormal fluid in skull & Neuro impacts on waking. If oxygen less for brain, then my heart rate increases while sleep. Canula & oxygen machine noise not great for sleep but overall been helpful to me.

I use small portable unit so it can easily be used when travel for medics etc. I started with constant flow larger machine hire to test but realised needed portable one. My machine is Imogen One with car charger & shoulder carrier but are lots of machine choices. NHS lent me CPAP machine to try if want to lie flat & sleep. Not sure if or when will try that. Bit scared it’s too much as I only use setting one (lowest) on my machine. D

I do get some desaturisation events awake but for me overnight sleeping is main issue. D

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