[Diagnosis] Understanding AHI, blood pressure, pulse, insomnia

[hollysleep]

Hello, I'm very glad to read the experiences and wealth of information on these boards.  Twenty years ago, my husband said that I would stop breathing then gasp for air throughout the night.  Five years ago, on a road trip, my friend told me the same thing and she insisted I request an in-clinic sleep study.  The sleep study lady was rude.  She said I'd barely slept all night, but the one cycle they captured was fine, and made me feel like a fool for going in.  Two years ago, I was dx'd with congenital heart failure & pulmonary hypertension.  Last year, my PCP recommended another sleep study, which started with a simple at-home kit.  It was a ResMed Apnea Link Plus, fwiw, and the report stated: 

"The patient experienced 227 respiratory events in total. Of these, 164 were identified as Central apneas (24.6/h) , and 63 (7/h) were identified as hypopneas. The overall apnea-hypopnea index (AHI) was 24.6 events/hour."

Question - is that AHI correct?  I thought it was calculated by adding the 24.6 + 7.  

Anyway, this would have been followed up with another in-clinic study, but unfortunately I lost my job and insurance.  After 3 months, I was able to see a doctor on state-funded healthcare, but although she referred me for another sleep study, more months passed without being contacted for that.  By then I'd found another job, and now my new insurance has started - halleluyah.  

So I'm obviously having trouble with sleep, lol.  Terrible insomnia, restless leg/body, nocturnal hypertension (160/90 range) & racing heartrate (100 at rest), pitting edema, cold/numb hands & feet, chest pains!  Then on the weekends, I can sleep from Friday night to Saturday night.  Thankfully with new ins. & dr. I've been given a medication for high BP, and will be seeing a cardiologist next week, and begining the sleep-study referral again.  I started reading about central apnea, again, and am worried that I'll be started on a CPAP that won't work, and that it will all be exasperating.  I'm trying to educate myself, and crossing my fingers for a great sleep-study doctor.  For the record, I'm 49/f, and 40 pounds overweight which has been gained in the last 5 years.  I've been drinking a lot of Coca-Cola for energy, but trying to quit.  

Thank you for any advice, or for your been-there-survived-that! encouragement.

[hollysleep]

P.S. Also in the at-home sleep report: "continuous oxygen saturations showed a mean Sp02 value of 90% throughout
the study, with minimum oxygen saturation during sleep of 80%," which is the same if not worse now. I've been obsessively using my little oximeter throughout the night and daytime. Daytime at rest is avg. 93-94 oxygen, which drops with exertion and also laying down. So another question I have is...

Does sleep apnea cause low oxygen even throughout the day? Once I do start treatment for the apnea, can I expect improvement there, or is it caused by heart failure/damage. Also, same lines, can I hope for BP to improve, as well?

[WakeUpTime]

...
So I'm obviously having trouble with sleep, lol.  Terrible insomnia...
I've been drinking a lot of Coca-Cola for energy, but trying to quit.  

You've reminded me of the vicious behavioral cycles of having bad sleeps.  We have to be careful of the natural responses to those bad sleeps.  (Much easier said that done.)  Tiredness leads to less physical movement and often switching to foods that give us quick energy.  Often that includes sugar and caffeine.  (I'm an expert on that.)  But too much of those intakes (or too little movement) contributes to another bad sleep the next evening.  (Rince. Repeat.)  I still am challenged by that each day.  I'm just remembering the first words of my sleep doctor more than 10 years ago, "lose weight" and "significantly cut back on caffeine", to which I immediately replied "is there a surgery for this condition?".

[clownbell]

@ Hollysleep - One of the bonna-fide experts will stop by soon, but in the meantime may I throw in my two cents.

First, about the AHI. It seems to me that it should be 24.6 + 7 = 31.6.

Secondly, most seem to be central apneas -- too many to all be treatment emergent. Straight-pressure CPAP machines and variable pressure automatic machines (APAP) are NOT designed to treat primary central apnea. The best machine is an ASV machine. HOWEVER, insurance typically requires the patient to fail on regular cpap therapy before they will pay for the much more expensive ASV machine. You can ask your doc to prescribe a ResMed ASV machine, but doc may not do that because he/she knows the insurance company procedure. It's worth a call to your insurance company to ask whether they will pay for ASV machine from the git-go.

[SevereApnea]

@ hollysleep,

commiserations, poor sleep 'aint no good.

please confirm that your profile is correct and your are not yet using CPAP.

Good to hear you will get some medical care about the health issues. Why not beat them to the punch and take care of simple things like caffeine and other wholistic health matters?


you said "Twenty years ago, my husband said that I would stop breathing then gasp for air throughout the night.  Five years ago, on a road trip, my friend told me the same thing and she insisted I request an in-clinic sleep study." This is exactly what my wife said to me for many years until I was rudely awakened by a medical event which forced me to listen to her! Finally!

I do believe that inadequate sleep studies (short sleep, not too deep of a sleep) will not fully capture your real situation. What I am suggesting is that based on your history from your husband you may be experiencing more true obstructive events than the sleep study revealed.

Based on that you may wish to look at different pillows, soft cervical collars, dietary modification in the meantime: plenty of advice here from others on this board that will inspire you.

Do get the medical workup.

Patience is needed, I am now starting week #130 on CPAP and only now are things starting to work for me!