[Treatment] Diagnosed Today!! Help!!!

[ambroseee]

Hi all, this is my first of hopefully many threads on this site. I was newly diagnosed today with obstructive sleep apnea. I have been trying to figure out for the past 2 years what has been causing all my symptoms: extreme fatigue, no energy, acid reflux, costochondritis, heart rate, hypertension, anxiety, irritability, forgetfullness, tingling, etc. Doctor's thought it was anything from nutrient deficiency to MS, then my 3rd cardiologist told me he wanted to do a sleep study on me 3 weeks ago which was so strange to me because I was like, "I don't snore and I sleep all the time!" Low and behold my results came back today, he said I was a 7 on the rating (unsure what that means) and that I do in fact snore, have about 40 apneas per hour, etc. 

I am a 20 year old thin female who has no other medical problems, I don't drink, I don't smoke, I exercise regularly, none of my family has sleep apnea, and I've even had my tonsils and adenoids out AND have had a septoplasty to fix my deviated symptom, so this diagnoses was a complete shock to me. Anyways, I have many questions I hope some of you can answer. 

Did any of you experience these symptoms I listed above, or any similar? If so, did they improve after starting your treatment?

I was prescribed a CPAP machine but my physician said it may take a month for me to get it, so is there anything I can do in the mean time to help this sleep apnea before I get my machine?

Does the CPAP machine truly help with the apnea, i.e. will my symptoms such as extreme fatigue, fast heart rate, and anxiety start to diminish after using the machine? Should I get a full mask or just a nose mask? 

Any additional tips, support, anything would be greatly appreciated! I'm just a shocked, scared teenager trying to focus on pharmacy school while dealing with these awful symptoms. Thanks so much!!

[DeepBreathing]

G'day ambroseee. Welcome to Apnea Board.

That first diagnosis of sleep apnea can come as a shock, especially for somebody as young as yourself. The good thing is that you've got your diagnosis early so you won't have many years of apnea slowly damaging your body (as happened to most of us). If you're experiencing 40 apneas per hour, that is regarded as severe and it certainly could be contributing to your other symptoms.

In my case it was also my cardiologist who sent me for a sleep test to try and track down the cause of heart palpitations. Once using the machine, those palpitations have disappeared completely. I also lost the urge to sleep while driving to work, and the habit of falling asleep during afternoon meetings.

The first thing you should do is get hold of your sleep study report and have a look at the various types of events. Typically people have obstructive apnea, where the upper airway becomes blocked by your tongue, soft palate or other tissues while you sleep. You can also have hypopneas, which are a partial blockage. There is also a type of apnea called central sleep apnea. This is different from the other types as there is no blockage, but your lungs don't get the "breathe now" message from your brain. Because you are young, skinny and fit, it wouldn't surprise me if at least part of your problem is central apnea. If so, you must discuss this with your doctor as centrals require a different type of machine.

A CPAP machine will most definitely treat your apnea and resolve many of the symptoms you describe. However, about 50% of people give up on the machine - in most cases I believe it's because they are not set up properly and they're not getting proper support from their doctor and DME supplier. This forum will provide you lots of support, but you will also need to engage your family and partner (if any) to help you along. Some people adjust to the machine instantly and have immediate relief. For most of us it's a journey - two steps forward, one step back.

The hardest part for most people is getting a mask which fits properly, doesn't leak and is comfortable. There's no one right answer here - you need to try as many as necessary to find the one which suits you. Make sure your contract includes a provision for you to try and return masks which don't suit. Two very popular types you could start with are the Resmed P10 pillows or the Fisher & Paykel Simplus full face mask.

Make sure you get a fully data capable automatic machine. This is very necessary to optimise and fine tune your treatment. This link is a little bit out of date, but does indicate the type of things you need to watch out for: http://www.apneaboard.com/wiki/index.php...ne_Choices Beware that many DMEs either don't know much about CPAP machines or are less than forthcoming in giving you the best service.

In the meantime the best advice is to sleep on your side - this has a demonstrable effect on reducing obstructive apnea. Also, make sure that you sleep with your neck extended (ie don't tuck your chin down to your chest) The easiest way is to make sure you have a nice supportive pillow.

Unfortunately for all of us there is no cure for apnea. However it can be treated with excellent results.

[Beej]

Welcome to the forum.

I second the sleeping on the side; it cut my apneas by about 75%. If you're not used to it, it may be helpful to get a firm, bolstering pillow to place behind your back so that if you start to roll onto it, it stops you.

If you've got GERD/Reflux, sleep on your left side to help reduce that. Also, putting the head of the bed on some bricks will further help with that.

For rapid heartbeat/anxiety/breathlessness, you may find that practicing a gentle, slow, breathing exercise will help, as follows:

Relaxation Breathing​
- based on the information in "The Relaxation Response" by Herbert Benson, MD.

Begin by sitting in a comfortable chair with good back support, or lying down. The key thing is to have your body pretty much straight between hips and shoulders so your lungs have room.

Now, breathe out completely. That way there will be room for a full breath in. If you start with half filled lungs, taking a deep breath in won't feel very large.

Pause.

Slowly, take a deep breath.

Pause.

Slowly, exhale.

Repeat, and establish a pattern of slow, deep breathing. Give yourself a good 20 minutes (turn off the phone, close the door) to get into this process. If done at bedtime, you may drift into sleep.

By slowing and deepening your breathing, you often cause the heart rate to slow and relax, muscle tightness to ease away, and blood pressure to decrease.

[Gideon]

Welcome, and everything above.  

especially the bit about a data capable machine.

All too often the DME will dispense the cheapest machine possible because that way they make more profit.  We would like to help you setup for the best machine possible for you.

[TASmart]

I had most of the things you described. Only I suffered with most of them for 40 years. Finally, I got the sleep studies, titration, and finally an APAP. I can say that after only 1 week several of my symptoms are either improving or gone. I am starting to sleep more restfully, and from night one I noticed that I did not want to go back to sleep as soon as I woke up. for the last couple days, I have not needed a nap, although I tried to sleep for an hour to test some APAP settings but did not sleep. My eyes are less bloodshot in the morning, but I think that's from the filtered air reducing allergens. I can actually breathe through my nose all night, never been able to. BP and pulse are down, at age 60 my pulse is still 60 BPM at rest. Now if I can just lose all the pounds I piled on over the years.

I would advise that your life will be better, far in excess of the bother of the hose-nose connection.

[trish6hundred]

Hi ambroseee,
WELCOME! to the forum.!
I know this can be overwhelming, but you came to the right place for help.
I wish you good luck as you start your CPAP journey, hang in there for more responses to your post.

[dosco]

especially the bit about a data capable machine.

All too often the DME will dispense the cheapest machine possible because that way they make more profit.  We would like to help you setup for the best machine possible for you.

+1 to Bonjour's comments.

I've been on a CPAP since late 2007 ... my current machine is a non-data-capable CPAP "brick." After finding this forum, I found my sleep study and then was able to rent a Resmed S9. The ability to review data from the previous night is simply amazing. I learned that I'm a "mouth breather" (insert joke here, haha) and my nasal pillows are not effective when the air is just shooting out of my mouth during mouth breathing episodes. Yesterday I ordered a full face mask (FFM) as a result, should be here sometime today.

The other thing is that I can now experiment with "automatic PAP" ... last night was the first night using the Resmed's APAP capability, and I found that 7 cm air pressure might be more effective than 8 cm (my prescribed setting for my CPAP).

The DMEs generally don't care all that much, so it's on you to own your treatment. Data will help you win the day.

I strongly suggest you ask your DME what machine they plan to dispense to you, and compare that to the "list of machines" (link here) PRIOR to accepting the machine from the DME. They'll probably do the least amount of work possible to fill the doctor's prescription - and you'll be on the short end of the stick.


Remember: only you can own your treatment and be your own advocate.

Good luck.

Regards-
Dave

[Gideon]

I was prescribed a CPAP machine but my physician said it may take a month for me to get it, so is there anything I can do in the mean time to help this sleep apnea before I get my machine?

Find out what machine they are planning on getting, You want "ResMed Autosense 10 AUTOSET"  This is a fully data capable machine that is an Auto CPAP and IS the same billing code as any other CPAP.  Ask your Dr. if that is what he prescribed.  If not ask him if he could specifically request that machine with a DAW (dispense as written).  This ties the hands of the DME into not giving you a brick.  Tell him you are going into Pharmacy AND you want the ability to see ALL the data 

in a nutshell what we call a brick does not offer enough data to with knowledge change your CPAP Therapy.  That is not enough data you, your Dr., your sleep lab, your DME, or us to see that is happening in your therapy and subsequently alter your therapy.  This is why the machine you get is so, so important.  We will, or they (your Dr, DME, etc) may take an educated guess on what changes to make.  But this is best done with data.

Any additional tips, support, anything would be greatly appreciated! I'm just a shocked, scared teenager trying to focus on pharmacy school while dealing with these awful symptoms. Thanks so much!!

Unfortunately, or fortunately it is extremely likely this will be with you your entire life.  Keep this site bookmarked.  The members here can help you through anything apnea related.  And I mean ANYTHING.

Does the CPAP machine truly help with the apnea, i.e. will my symptoms such as extreme fatigue, fast heart rate, and anxiety start to diminish after using the machine? Should I get a full mask or just a nose mask? 

Look at the Mask Primer.   see my signature
And every chance you get try on masks, different masks, under pressure and lying down.  Start with the smaller and less intrusive to the larger and more intrusive.  Unfortunately the fitting of a mask is very personal.  All anyone else can say is that this mask works for me or that mask does not work for me.  The ONLY way to find the right mask is to try them on.  Try a lot of them on.
And yes, CPAP does help with apnea.
What kind of detail can you get  Detail down to breath by breath of what is happening, (what we/you want) or basically nothing.  Even just how many hours you used the machine
we can get the below and much, much more.  Don't worry about getting it.

[Hydrangea]

Welcome!

And ditto to what everyone else has already said, especially bonjour.

I would've never guessed I had sleep apnea, and I most surely would've never guessed I could benefit from a CPAP. Alas, here I am, loving my CPAP and feeling amazing!

[Marillion]

Welcome and good job finding this forum. I actually envy you in finding out so early! Like many others above, I too was only diagnosed a couple of months ago at the age of 47 but I have suffering from Sleep Apnea for years now and just "dealing with the tiredness" like I assumed everyone is. I thought it was a normal part of life when you hit your 40's. Well, even after the first week, the changes in my life were immediate and drastic. I have way more energy than I have had for years and I feel much better in many, many ways. Including not feeling ready to fall asleep in the afternoon like I always did before.

As mentioned above, one of the hardest parts is finding a mask that works for you. Try as many as you can. My recommendation primarily falling on the Airfit P10 as that is the one which worked the best for me.

Once you get your mask sorted out, you will get lots of help here with your settings and adjustments. Just make sure you get the right kind of machine, as mentioned to you above. All the best to you!