New & just diagnosed w/apnea by medical supply clerk??

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Re: New & just diagnosed w/apnea by medical supply clerk??

Post by Janknitz » Fri Sep 19, 2014 6:51 pm

Don't take ANYONE's word for any of this. Call your insurance company and confirm.
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VikingGnome
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Re: New & just diagnosed w/apnea by medical supply clerk??

Post by VikingGnome » Fri Sep 19, 2014 7:47 pm

DON'T USE ANY CAFFEINE (no coffee, tea, soft drinks, energy drinks). The number one cause of racing heart is caffeine in people not diagnosed with other medical conditions causing it. It made my sister's heart rate go up to 170 at work and she would almost pass out. Without caffeine she is doing fine. No need for medication to regulate heart beat. A lot of people with undiagnosed or newly diagnosed sleep apnea depend on caffeine to make through the day. The excessive daytime drowsiness caused by interrupted sleep all night makes people reach for the coffee pot all day. But caffeine is a real booger for people with sleep apnea. It can interfere with your ability to fall asleep and can give you the jitters during the day. Makes your heart race, increases blood pressure. You can also suffer caffeine withdrawal symptoms when you quit using it abruptly. I went through caffeine withdrawals once. It was a very scary and uncomfortable experience.

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brianthenewb
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Re: New & just diagnosed w/apnea by medical supply clerk??

Post by brianthenewb » Fri Sep 19, 2014 7:55 pm

Greenkat wrote:Welcome!

I am reading thru your posts about your symptoms...particularly the heart symptoms, and wanted to share my experience.

I am also morbidly obese, but in my late 50's. About 10 years ago I began to have periods of a racing heart, but I thought they were anxiety as my father was ill & dying. I went in for all the heart tests...echo, stress test, etc. and was pronounced okay.

I continued to have periods of racing heart after that I put off to being related to stress, but it became worse in 2009 around the time my mom passed. I went in again for a series of tests and was cleared! So again I am thinking these symptoms are stress/anxiety-related.

Meanwhile, I am having all the symptoms of sleep apnea...waking up feeling unrested, waking up breathless, and getting foggier and foggier at work, but do nothing about it. I trick myself into believing it is from stress, getting older, and the demands of my job.



In 2012 I go in for pre-surgery testing and my EKG indicates an irregular heart rhythm. Long story short I am diagnosed with A-fib! I get referred to a cardiologist who does not even prescribe aspirin although BLOOD CLOTS are one of the major side affects of this condition unless you are put on blood thinners. My ankles begin to swell like tree trunks over the next year despite faithfully taking my blood pressure meds. I am feeling increasingly tired...actually calling off work b/c I did not sleep well the night before.

Despite my weight I had always been active and energetic up until about 2011. Now I can SEE my decline. I am only 57! I do NOT want to live like this. I go to another cardiologist for a 2nd opinion who is appalled my 1st cardiologist did not put me on a blood thinner or order a sleep study as heart problems and sleep apnea are linked. I go for my sleep study, and here I am!

The morale to my story? You do not want to do permanent damage to your heart...especially at 29, and you want to learn to be your own advocate for your health. I really think my 1st cardiologist did not do enough to get a handle on my condition or carefully review my results. Stay on these forums and gather as much info as possible and take your questions, comments or concerns to your doctor(s). Apnea is nothing to ignore or brush off! It is a serious & life threatening condition!

Thank God I never smoked, but I'd also focus on getting either the weight or smoking addressed. I am in the process of weight loss surgery b/c between the heart and the weight I am still more tired than I want to be despite a huge improvement from my apnea treatment.

So best of luck & sorry for the 'no nonsense' post, but at 29 you have your whole life ahead while a lot of us here are much older.

Keep us posted!

Kathy
Thanks for sharing your story Kathy, I appreciate all of the responses I've received, it's nice to know we're not alone. It is a little disheartening I keep hearing I'm one of the youngest ones though, but hopefully that means we got it diagnosed in time I won't have permanent damage. That's been my biggest fear is that all of these feelings I'm having in my heart & chest, I feel like it has to be taking a toll on my heart. I've had like 4 or 5 ekg's in the last 7 months and none showed anything. Also, been doing a lot of reading on palpitations which a lot of sites & people just describe as a increased awareness of heartbeat and skipped beats, but sometimes it feels as if though things are passing through my heart, it makes me think it's a clot or something passing through my heart. We go over my echo, holter monitor, and sleep study results next week and I hope to be on CPAP by then.

Also, I'm about 99% certain some of my side effects have been caused by Atenolol as the first time I actually felt chest pain was on 50mg then on 100mg I thought I was having a heart attack because I was having severe chest pain & a sharp pain shot down my left arm. After the ER cleared me, I googled something like "Atenolol shooting pain in arm & chest" and a guy explained EXACTLY what I felt to a T and he too recently started taking Atenolol. Kept asking my doc about an alternative or something because I've experienced most of the possible side effects, even the ones that say stop use & seek immediate medical attention and he tells me to keep taking it!!

Afib can be caused by apnea too, right? Is it reversible or will you always have it? Have you noticed any improvement since starting CPAP?

I know I need to quit smoking and lose weight, it's just something I never thought about because it never slowed me down before. I could walk for hours & hours and at my last job, we walked about 10 miles a night. I went from 337 to 275 in a year, got laid off and slowly started putting the weight back on, but I swear since February, I must have gained 30-40lbs! I'm just too exhausted all the time & never have energy.

My Dad was 60 and 325lbs 2yrs ago and he started to exercise & eat right and now two years later, he's 195lbs! The neighbor didn't recognize him, they thought my Mom traded him in. Lol. But yeah, if my Dad can do it at his age, I know I can too, I just need energy and wanna make sure my heart won't explode since just a little exercise made my heart race & made me very dizzy, as well as set off the irregular heartbeat detector on my Omron.

brianthenewb
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Re: New & just diagnosed w/apnea by medical supply clerk??

Post by brianthenewb » Fri Sep 19, 2014 8:03 pm

VikingGnome wrote:DON'T USE ANY CAFFEINE (no coffee, tea, soft drinks, energy drinks). The number one cause of racing heart is caffeine in people not diagnosed with other medical conditions causing it. It made my sister's heart rate go up to 170 at work and she would almost pass out. Without caffeine she is doing fine. No need for medication to regulate heart beat. A lot of people with undiagnosed or newly diagnosed sleep apnea depend on caffeine to make through the day. The excessive daytime drowsiness caused by interrupted sleep all night makes people reach for the coffee pot all day. But caffeine is a real booger for people with sleep apnea. It can interfere with your ability to fall asleep and can give you the jitters during the day. Makes your heart race, increases blood pressure. You can also suffer caffeine withdrawal symptoms when you quit using it abruptly. I went through caffeine withdrawals once. It was a very scary and uncomfortable experience.
I stay away from caffeine completely, use to drink an occasional sweet tea, like 1 a month and maybe a hot mocha once a month in the winter, but I've never been a coffee drinker and stay away from chocolate and teas now and have never had an energy drink. The only soda I drink occasionally is caffeine free root beer.

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Re: New & just diagnosed w/apnea by medical supply clerk??

Post by Guest » Thu Sep 25, 2014 3:27 pm

Hey there Brian. Welcome and best wishes. Relax and rest assured there is help and plenty of sensible advice available here. It takes time to get used to major events like this. Reaching out and listening to other stories can really help. Strange as it may seems, you're the lucky one being given the information about a couple of treatable conditions at your age. Not saying it makes it easy, just that you can get a head start on looking after your health.

I was really struck with your story, it was almost like you were ghost-writing chunks of mine. Thing is that it wasn't until this year when I got an 'official' diagnosis of sleep apnea and a-fib that it all started to make some sense. And to top it off, I now seem to be getting some help for a life that was turning into a living nightmare as you probably understand. Funny enough, it was your comment about having to pee that caught my attention as it did the doctor who suspected I was having a mini-stroke and started the ball rolling that put this all in perspective.

I started having 'dizzy spells' when I was in my early 30's. It was apparently everything from swimmers ear, mystery infections, positional vertigo to a build up of ear wax and a problem with my neck muscles. No one -including me- connected any of the other things going on at the time. I had heartburn, pain in the middle of my back, aching ribs, and shoulder pain. I was told the pain in my jaw and teeth was from grinding. Maybe I had a weird rheumatism or fibromyalgia. I was told that my exhaustion, depression and high anxiety were a result of being me and worrying too much.

Apparently the exhaustion and constant bouts of 'flu like symptoms' I had in my late teens and 20's from supposed mono/eppstein-barr/overwork/worry, could have contributed. The fact that my friends and family joked about my snoring and that I wasn't always breathing when I was asleep didn't register anywhere, was forgotten, and wasn't a notable quirk in my 'personality'.

i don't think my story is especially uncommon. Except that it went on so long. By the end of my 30's and into my 40's I was having debilitating bouts of vertigo on a regular basis 3 or 4 times a year. It seemed to be combined with a flu and was even once suggested that it was possibly meningitis. Then a little over ten years ago I had a massive set of events almost identical to yours. I was sick for 6 months. felt like I was walking underwater and had to use a cane. Was panicking most of the time started suffering chest pain and fell completely through the cracks of the healthcare system. Interestingly enough, it was while hooked up in emergency that I noticed when I fell asleep, the machine started pinging because my oxygen was too low and I was only breathing a couple of times a minute. This happened over a number of visits and each time the nurse came in to bang the machine or turn it off because it was 'acting up'.

I learned to live with it all and the confusion until this past year. Last christmas I was out for a walk and noticed how short of breath I was, but didn't really pay much attention. A month later, I thought I should see the doctor about the chest pain I was having because it wasn't really indigestion. He said I was a 'hyper-reactor' - a term coined in the 1930's - and it that it was certainly acid-reflux. The 159/100 blood pressure was just 'white coat syndrome' but he would send me to a clinic for an ECG just in case. When I got to the clinic, the doctor looked me over and even though there was nothing really wrong with the ECG said I needed to get to a hospital to get some blood work done. Lucky, I was told that I had had a major heart event (heart attack) and was two weeks in the hospital before they would let me go. All the tests came back normal but there was still definitely something wrong. No one knew exactly, but they suspected it was cardio related. There were weekly trips to the emergency. A couple of times in an ambulance. There was no controlling the angina, My daily blood pressures ranged from 60/42 to 175/105. A couple of times going into the hospital they were well over 200/110 and I was scared.
The ridiculously low blood pressure was generally in the middle of the night, and was followed by a spike later in the day. It was one particular night, I wound up in emergency with a constant uncontrollable urge to pee, dizzyness, trouble swallowing, mentally confused, chest pain and high anxiety. Sounds as if you might understand the symptoms yourself. The doctor on call didn't find anything wrong with my heart but he did suggest a cat scan of my head. He didn't like what he saw and held me overnight for a MRI. The results said that there was evidence of a previous stroke, some scarring in the cerebellum and inflammation of the brain tissue, probably as a result of one or several TIA's or 'mini-strokes'. I was sent for a sleep test and wore a heart monitor for two weeks. They found I had random atrial-fibrillation which was likely causing smaller clots to shoot straight to my brain and then blow through leaving little trace, and temporary symptoms and impairment that I recover from over time. Occasionally they think they were going to my heart.

When I went for my sleep study, the clinician woke me early in the night to say that my oxygen levels were dropping below 72% and I needed to be on a cpap right away. They didn't even tell me how many or types of incidents until later. (in the low 20's).

I was put on blood thinners specific to atrial-fibrillation/stroke and a cpap immediately. I went on the DASH diet and started a regular exercise program. Within 10 days, my blood pressure was regular at around 115/75 where it has remained rock steady for a couple of months now, and I get 6 hours a night of sleep.

Discussion with my service provider suggests that I've had apnea since I was 7 or 8 years old and untreated over time, has contributed to neurological problems responsible for the heart attack, a-fib, and strokes. I'm definitely not saying this is what has happened in your case but to let you know not to fight yourself, your diagnosis, or your healthcare providers. Even though I hate to say it, they are on your side. It's possible to get to the bottom of things in time and get out of the vortex. A good nights sleep can really help.

Right now it's a chicken or the egg what is causing what and it doesn't really matter in the long run as the symptoms have pretty well stopped. Keep asking for help and listen to the stories here. I consider myself pretty lucky, not taking this seriously is like playing chicken on the freeway. Wouldn't recommend it myself. Sorry to take be so longwinded... Your story hit a nerve, and I wish I new there was an end to it when I was in your shoes. If you want to PM me, I can send you some pretty good info on TIA's and A-fib. Same to anyone else. All the best.

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archangle
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Re: New & just diagnosed w/apnea by medical supply clerk??

Post by archangle » Thu Sep 25, 2014 6:04 pm

Greenkat wrote:My ankles begin to swell like tree trunks over the next year despite faithfully taking my blood pressure meds. I am feeling increasingly tired...actually calling off work b/c I did not sleep well the night before.
We should probably start a new thread about this rather than hijack this thread.

Look very carefully to see if any of your symptoms might be due to the BP meds. I had a nasty cough from one of my meds. I thought it was caused by the Zestril I was taking. Two different doctors swore up and down that it wasn't the cause. It was listed as one of the side effects, but the doctors said it was uncommon and they had never had problems. I told the doctor I wasn't going to take that med any more. We changed to another med and the cough went away.

A few years later, the doc said that he had had that problem with a several of his patients and they now refer to that as "the Zestril cough."

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Re: New & just diagnosed w/apnea by medical supply clerk??

Post by angeltink » Fri Sep 26, 2014 12:04 am

I just had to respond to you thoughts about not getting the call from a cancer doctor if they found cancer. I was diagnosed with cancer last year and it was in a phone call from a CNA at the doctors clinic who diagnosed me based off an ultrasound and no an actual biopsy done. The CNA could not answer any of my questions nor did she act like she cared just that she was bored and wanted off the phone. The doctor refused to call me to answer my questions so I fired her and then had to find a new doctor and wait till I could get in to see them. Anyway, my point is that the DME person calling you does not surprise me from the experiences I have had in healthcare. I have one doctor that only calls on Wednesday's and expects you to be home when he calls and if not you wait another whole week for lab results good or bad. He is about to be fired as well if I could find someone to replace him.

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Re: New & just diagnosed w/apnea by medical supply clerk??

Post by 49er » Fri Sep 26, 2014 2:42 am

archangle wrote:
Greenkat wrote:My ankles begin to swell like tree trunks over the next year despite faithfully taking my blood pressure meds. I am feeling increasingly tired...actually calling off work b/c I did not sleep well the night before.
We should probably start a new thread about this rather than hijack this thread.

Look very carefully to see if any of your symptoms might be due to the BP meds. I had a nasty cough from one of my meds. I thought it was caused by the Zestril I was taking. Two different doctors swore up and down that it wasn't the cause. It was listed as one of the side effects, but the doctors said it was uncommon and they had never had problems. I told the doctor I wasn't going to take that med any more. We changed to another med and the cough went away.

A few years later, the doc said that he had had that problem with a several of his patients and they now refer to that as "the Zestril cough."
I apologize for this off topic response but I had to reply to this post. So now, the doctor is the judge of whether your side effects are legitimate or not, facts be dammed?

What about the patients who don't know any better and do what the doctor says. How much longer would they have suffered until he/she figured things out?

Back to regularly schedule programming.

49er