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

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

Post by brianthenewb » Thu Sep 18, 2014 10:25 am

Hello all, let me start off by introducing myself and giving you a little info that I may be asked anyway...I'm Brian, 29yo, 6'1", 345lbs, pack a day smoker, took a sleep study 3 weeks ago, and yes, I was just diagnosed with sleep apnea by the medical supply clerk who called me yesterday afternoon to inform me that she had an order for a CPAP machine for me!!!??? She didn't tell me what kind I have or the severity of it but I assume my Cardiologist who ordered the study will fill me in when he pulls his head out of his @$$. I really liked the guy too, but that's not the way to find out you have a life changing, serious condition. I mean, what if they found cancer and I got a call from a secretary scheduling me for chemotherapy before being informed of the diagnosis?

I have been experiencing strange symptoms for about 3-4yrs. I went to my PCP who's retired now with the following symptoms, dizziness, irregular bowel movements, frequent urination, fatigue/tiredness, muscle twitching/spasms, and be diagnosed me with high blood pressure 3-4yrs ago then he told me a month later he was wrong, I just have vitamin d deficiency and may be lactose intolerant, which I am not....Most of my symptoms persisted and I lost my health insurance so I didn't seek any further medical advice/treatment and just kind of learned to deal with it until earlier this year when symptoms intensified and I developed many new symptoms...

Fast forward to February 28th, 2014....

Woke up, ate, went on a drive with my brother to the casino just over an hour away and 45min into the drive is when I was nearly scared to death, I felt a very strange sensation in my chest/heart, it felt like something had passed through my heart, like something the thickness of a shoelace passing through one of those tiny little coffee straws, then it happened again & again about 40 times over 15min. When we got to the casino I had my bro take me straight to the front, had to pee real bad but I was so anxious/nervous, I couldn't go and my heart literally started to beat out of my chest and I got so dizzy/lightheaded I thought I was going to faint or just drop dead! Went right across from the restrooms to security and they checked vitals, pulse was 153, bp was 183/110, they called paramedics who immediately attributed it to stress/anxiety/panic...we stayed for about an hour then I got dizzy and said lets go, made it back home where I was fine for a couple hours then my pulse & bp went sky high again so my bro takes me to ER where they say I'm a little dehydrated probably from increased urination, so they gave me saline, ran a EKG & full blood work, came back normal and they discharged me diagnosing me with anxiety/panic & heart palpitations.

Had another episode a few days later high pulse, bp, nearly fainted, went to a different ER where they said same thing but prescribed me 25mg of atenolol which my new PCP upped to 50mg and I started feeling pinching in my chest & got really fatigued he said it's not enough and upped it to 100mg which is when I started getting severe chest pain, would nearly faint everyday, pulse dropped to 46 bpi, bp to 100/56, felt like I was having a heart attack. I went to ER again, they reassured me again I was not going to die that 100mg atenolol was too much for me go back to 50mg. My PCP disagreed, wanted me to stay on 100mg finally got him on board to lower back to 50mg, started feeling better but still not great and had these heart palpitations ALL THE TIME so got the docs PA to write me a referral for a Cardiologist which he was totally against, said I'm only 29, I've had full blood work, multiple EKGs, 2 chest X-rays, heart is healthy, etc.

Well in my first appointment with cardiologist, he came to the conclusion I may have sleep apnea and ordered a sleep study immediately as well as a halter monitor & heart ultrasound. Meeting with him on 9/25 to learn all results but as I've mentioned, I got a call from the medical supply informing me I have a CPAP machine on order, so I already know I have apnea. I just am curious if any of you have some of the same symptoms I've had and if anyone is on atenolol as I'm sure that's caused some symptoms & side effects.

Here is a list of my symptoms I've had since February 28th of this year...

Racing pulse
High blood pressure
Heart palpitations/arrhythmia
Dizziness
Near fainting
Nausea
Fatigue
Excessive daytime sleepiness
Frequent urination
Pretty frequent Diarrhea and constipation
Blurry/double vision, especially when reading text or looking at lights
Occasional Migraine headaches
Almost daily headaches
Neck aches
Head pressure mainly by left & right temples
Irritability & mood changes
Hot & cold flashes running throughout whole body kind of like a flushing sensation
Electrical sensations throughout body
Muscle spasms & twitches
Sharp pains in limbs, side, back, and shoulder/chest
Pins & needles sensation in limbs
Tingling in limbs
Limbs falling asleep quite often
Shortness of breath occasionally
Feeling off balance and kind of a swaying feeling, almost like I'm on a boat like legs are going to give out. Maybe like equilibrium is out of whack?

Well I think that's about it, at least all I can think of but this has been such a scary year and I've been afraid to go on walks and leave the house for fear that ill faint and crack my head open or crash my car, so I've been a COUCH POTATO since 2/28 and I woke up 3 weeks ago with what I thought was a bad Charlie horse but it turned out to be a DVT (blood clot) in my left calf!! My dad has had 3 clots and my healthy bro has had 1 but they were all from trauma and they were tested for Leiden factor V which they had so I just found out in August I have it and my PCP was pissed I had the PA order the test then he told me I have the gene mutation that makes us more susceptible to clot but not to worry, I wouldn't get a clot unless I had blunt force trauma, then a week or two later I get a damn clot!!

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

Post by Julie » Thu Sep 18, 2014 10:42 am

Hi, you've had a very scary time! But now you know(?) more or less what's going on, you can address it and be taken care of.

This link will explain a lot of important stuff re getting the right machine vs what a dealer may try and tell you is available... read it.
http://maskarrayed.wordpress.com/taming ... e-quattro/

As far as all your symptoms go, they could be all about apnea, high BP, anxiety etc., and most can apply to various conditions depending on other factors, some of which are common to apnea, others not so much, but for now, just go with your MD's advice.

Until you get set up with a machine... do you have a recliner you can sleep in - not all the way backward, because being on your back provokes more apneas than anything, but more upright = fewer. If you sleep in bed, do whatever you can (row of pillows behind you, etc.) to sleep on a side instead.

Don't take meds if at all possible that would sedate you while waiting (tho' clear that with your MD), and don't drink alcohol any time after dinner (or close to bedtime). And cut back on caffeine in any form after noon... the idea is to sleep, but not with any underlying counteractivity going on.

And read your head off here about whatever comes up but don't worry that you'll necessary face any (certainly not all) of the problems others have. Everyone's different and deals with these things in their own way. This is far and away the best place online to learn, so you have come to the right place for help. Good luck with it all and get back with any questions.

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

Post by BlackSpinner » Thu Sep 18, 2014 10:50 am

Get a copy of both your prescription and sleep study.
Call your insurance company and find out who is in network and what is covered.
Then read up on what is top of the line machines.
You want a RESMED S9 elite, or Autoset (NEVER an Escape) or PR system 1 with a number higher then 460 ( never a 200 model)

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

Post by LSAT » Thu Sep 18, 2014 11:50 am

Age 29...High BP....345 pounds...smoking pk a day....heart symptoms for 3 years.....

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

Post by brianthenewb » Thu Sep 18, 2014 11:57 am

Julie wrote:Hi, you've had a very scary time! But now you know(?) more or less what's going on, you can address it and be taken care of.

This link will explain a lot of important stuff re getting the right machine vs what a dealer may try and tell you is available... read it.
http://maskarrayed.wordpress.com/taming ... e-quattro/

As far as all your symptoms go, they could be all about apnea, high BP, anxiety etc., and most can apply to various conditions depending on other factors, some of which are common to apnea, others not so much, but for now, just go with your MD's advice.

Until you get set up with a machine... do you have a recliner you can sleep in - not all the way backward, because being on your back provokes more apneas than anything, but more upright = fewer. If you sleep in bed, do whatever you can (row of pillows behind you, etc.) to sleep on a side instead.

Don't take meds if at all possible that would sedate you while waiting (tho' clear that with your MD), and don't drink alcohol any time after dinner (or close to bedtime). And cut back on caffeine in any form after noon... the idea is to sleep, but not with any underlying counteractivity going on.

And read your head off here about whatever comes up but don't worry that you'll necessary face any (certainly not all) of the problems others have. Everyone's different and deals with these things in their own way. This is far and away the best place online to learn, so you have come to the right place for help. Good luck with it all and get back with any questions.
Hi Julie,

Thank you for your reply. Yes, it's been a scary rollercoaster and part of me hopes that everything will get better once on CPAP and hopefully discontinuing Atenolol with PCP approval of course. I know it may not be a cure all, but I can dream, right?

I have always been a side sleeper and quite often just crash on the couch but since you mentioned sleeping in a recliner, I have slept in a recliner and big comfy chair with an ottoman the last couple weeks to keep my foot/leg elevated while recovering from this DVT and I even saw the PCP last week and told him that since I was diagnosed with a DVT, my other symptoms have pretty much gone away and I feel more rested. He said he can't explain that and I said well I'm not surprised, I've been seeing you for months and you haven't explained much, it took a 30min visit with a Cardiologist to tell me I may have sleep apnea. Anyways, since you mentioned it, my apnea must be less severe or maybe non existent when sleeping upright in a chair/recliner.

My leg has been feeling much better, so the last 3 nights I've been sleeping on my side on the couch again and my symptoms are starting to intensify again, excessive sleepiness, feeling fatigued, headaches are back, feeling the electrical sensations/vibrations again, etc. Many of my symptoms do come & go so not sure if sleeping on my side again has brought them back or not but that may be the case. They have a very, very comfy recliner in the sleep study room, I wonder if they can do a sleep study in that instead of the uncomfortable bed? The technician woke me up like 3 times throughout the night for a faulty oximeter, a wire coming loose, and to put the CPAP machine on which was great once we went from the nose mask to the full face mask. Hell, I always wanted to be a fighter pilot and with a full mask on I kinda felt like one.

Thanks for the helpful info & support, I'll checkout that site in awhile. I was going to put off picking up the CPAP until Tuesday when I have a Dr. Appt. right across the street but I figure now, why wait, the sooner I start therapy/treatment the better, right?

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

Post by ems » Thu Sep 18, 2014 12:02 pm

Sorry you're having such a difficult time right now. You're so young to be dealing with all this. Read on this site (you'll find answers to many of your questions) and if sleep apnea is the true culprit, you'll want the best machine and the most comfortable mask possible. Many of your symptoms point to anxiety as well.

I also was told I had sleep apnea by a medical supply clerk (Respiratory Therapist). Unfortunately, this is more common than you might think. Just keep in mind that your doctors work for you... not the other way around. If you're not comfortable with your PCP or cardio consider switching to doctors you feel are more competent.

Wishing you much success in getting to the bottom of this and feel free to ask any and all questions. There are many knowledgable people on this forum.
Last edited by ems on Thu Sep 18, 2014 12:05 pm, edited 1 time in total.
If only the folks with sawdust for brains were as sweet and obliging and innocent as The Scarecrow! ~a friend~

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

Post by brianthenewb » Thu Sep 18, 2014 12:04 pm

LSAT wrote:Age 29...High BP....345 pounds...smoking pk a day....heart symptoms for 3 years.....
No smarty mcfly, heart symptoms for 6 1/2 months. Damn, was really hoping I wouldn't have to deal with jerks & trolls on this forum but I guess some people just can't resist. Ya know that old saying "ya can't cure stupid?" Guess the same could be said for @$$holes...

brianthenewb
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Joined: Thu Sep 18, 2014 8:06 am

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

Post by brianthenewb » Thu Sep 18, 2014 12:08 pm

BlackSpinner wrote:Get a copy of both your prescription and sleep study.
Call your insurance company and find out who is in network and what is covered.
Then read up on what is top of the line machines.
You want a RESMED S9 elite, or Autoset (NEVER an Escape) or PR system 1 with a number higher then 460 ( never a 200 model)
Thanks for the tips, I think I'm gonna pick up a machine today so I'll see if they have one of the good ones you mentioned in stock and make sure insurance will cover it. Thanks!

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

Post by Julie » Thu Sep 18, 2014 12:18 pm

They won't let you (to my knowledge) use the recliner for the study because they need to get a 'worst case' scenario, a baseline of parameters to know how bad things may get on a given night, which they can then use to help titrate your pressure needs for the MD to tell the dealers to set your machine at.

brianthenewb
Posts: 30
Joined: Thu Sep 18, 2014 8:06 am

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

Post by brianthenewb » Thu Sep 18, 2014 12:46 pm

ems wrote:Sorry you're having such a difficult time right now. You're so young to be dealing with all this. Read on this site (you'll find answers to many of your questions) and if sleep apnea is the true culprit, you'll want the best machine and the most comfortable mask possible. Many of your symptoms point to anxiety as well.

I also was told I had sleep apnea by a medical supply clerk (Respiratory Therapist). Unfortunately, this is more common than you might think. Just keep in mind that your doctors work for you... not the other way around. If you're not comfortable with your PCP or cardio consider switching to doctors you feel are more competent.

Wishing you much success in getting to the bottom of this and feel free to ask any and all questions. There are many knowledgable people on this forum.
Thank you ems! Yeah that's what everyone including the docs are telling me that I'm too young to be dealing with this. I know I need to work on some lifestyle changes but it all takes time. Heck, maybe if I quit smoking and drop some pounds I'll lose the apnea but who knows.... I've always been a big guy (250lbs in 7th grade) but I've always been active too even 3-4yrs ago when I started felling a little strange, it wasn't until all this scary stuff started to happen on 2/28 when I became a recluse & couch potato for the most part, no more walks, working in the yard, fishing, crabbing, shopping, etc...

It was a little bit surprising to hear I have apnea from the supply clerk & not my doctor although I was suspecting I had it once I was put on CPAP in the sleep study...

I love the cardiologist but my PCP does act like I'm wasting his time and doesn't seem to offer much help or sympathy. I only went to him because after my initial ER visit he was doc I was referred to and he's my Father's PCP as well but when this all started I didn't have insurance because of the cover Oregon fiasco and he charged $100 for an office visit that never went more than 5 minutes! Since finally getting my insurance, he bills them $225 and I have had several visits that lasted 15-30 minutes but all of those were with a PA, the PCP still only sees me for 5 minutes and still acts like I'm not worth his time so I know it's time to look for am new PCP, I'm just waiting for this DVT to go away and the cardiologist results next week then I'll fire him.

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

Post by brianthenewb » Thu Sep 18, 2014 12:51 pm

Julie wrote:They won't let you (to my knowledge) use the recliner for the study because they need to get a 'worst case' scenario, a baseline of parameters to know how bad things may get on a given night, which they can then use to help titrate your pressure needs for the MD to tell the dealers to set your machine at.
Thanks Julie, that makes sense. Maybe I'll just ask them where they got the recliner, it was the most comfortable recliner ever! Maybe I can convince my doc to write me a prescription for a lay-z-boy. Lol

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

Post by ems » Thu Sep 18, 2014 1:08 pm

Brian... since you've been getting the "all clear" on the tests you're recently had, how about just taking some baby steps. For instance, a one block walk in the fresh air. Or, just sit outside in front of your house for 15 minutes, for starters. Fresh air helps to clear your head sometimes and really does make you feel better - anyway, you need the vit D, right?
If only the folks with sawdust for brains were as sweet and obliging and innocent as The Scarecrow! ~a friend~

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

Post by brianthenewb » Thu Sep 18, 2014 1:28 pm

ems wrote:Brian... since you've been getting the "all clear" on the tests you're recently had, how about just taking some baby steps. For instance, a one block walk in the fresh air. Or, just sit outside in front of your house for 15 minutes, for starters. Fresh air helps to clear your head sometimes and really does make you feel better - anyway, you need the vit D, right?
Yeah it's a good idea to get out for the fresh air & vitamin D, we're all vitamin D deficient here in Oregon. My current PCP tells me I have no vitamin or mineral deficiencies and told me I don't need any supplements but he didn't order tests to look for deficiencies, he just gave me his "opinion". I haven't got the all clear from the halter monitor or echocardiogram ultrasound or whatever but will get all those results next week so hopefully I get the all clear. I tried exercising for 30min with one of those foot peddlers about a month ago and felt great while using it but got extremely lightheaded when I got up and my heart was doing funny things and set the irregular heartbeat alarm off on my BP monitor for the 1st time. PCP didn't seem concerned. I think he thinks I'm making this stuff up or something.... always has a big grin on his face, just makes me wanna slap the you know what outta him...

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

Post by JQLewis » Thu Sep 18, 2014 1:38 pm

Just to emphasize the important point made by BlackSpinner, make sure the machine they offer you has full data capability. If it doesn't, say no thanks. Make sure you know what your prescription calls for before taking anything from a DME. It's also worth educating yourself about masks before accepting the first choice that someone else is making for you.

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

Post by SleepyEyes21 » Thu Sep 18, 2014 2:09 pm

[quote="brianthenewb"]Hello all, let me start off by introducing myself and giving you a little info that I may be asked anyway...I'm Brian, 29yo, 6'1", 345lbs, pack a day smoker, took a sleep study 3 weeks ago, and yes, I was just diagnosed with sleep apnea by the medical supply clerk who called me yesterday afternoon to inform me that she had an order for a CPAP machine for me!!!??? She didn't tell me what kind I have or the severity of it but I assume my Cardiologist who ordered the study will fill me in when he pulls his head out of his @$$. I really liked the guy too, but that's not the way to find out you have a life changing, serious condition. I mean, what if they found cancer and I got a call from a secretary scheduling me for chemotherapy before being informed of the diagnosis?

I have been experiencing strange symptoms for about 3-4yrs. I went to my PCP who's retired now with the following symptoms, dizziness, irregular bowel movements, frequent urination, fatigue/tiredness, muscle twitching/spasms, and be diagnosed me with high blood pressure 3-4yrs ago then he told me a month later he was wrong, I just have vitamin d deficiency and may be lactose intolerant, which I am not....Most of my symptoms persisted and I lost my health insurance so I didn't seek any further medical advice/treatment and just kind of learned to deal with it until earlier this year when symptoms intensified and I developed many new symptoms...

Fast forward to February 28th, 2014....

Woke up, ate, went on a drive with my brother to the casino just over an hour away and 45min into the drive is when I was nearly scared to death, I felt a very strange sensation in my chest/heart, it felt like something had passed through my heart, like something the thickness of a shoelace passing through one of those tiny little coffee straws, then it happened again & again about 40 times over 15min. When we got to the casino I had my bro take me straight to the front, had to pee real bad but I was so anxious/nervous, I couldn't go and my heart literally started to beat out of my chest and I got so dizzy/lightheaded I thought I was going to faint or just drop dead! Went right across from the restrooms to security and they checked vitals, pulse was 153, bp was 183/110, they called paramedics who immediately attributed it to stress/anxiety/panic...we stayed for about an hour then I got dizzy and said lets go, made it back home where I was fine for a couple hours then my pulse & bp went sky high again so my bro takes me to ER where they say I'm a little dehydrated probably from increased urination, so they gave me saline, ran a EKG & full blood work, came back normal and they discharged me diagnosing me with anxiety/panic & heart palpitations.

Had another episode a few days later high pulse, bp, nearly fainted, went to a different ER where they said same thing but prescribed me 25mg of atenolol which my new PCP upped to 50mg and I started feeling pinching in my chest & got really fatigued he said it's not enough and upped it to 100mg which is when I started getting severe chest pain, would nearly faint everyday, pulse dropped to 46 bpi, bp to 100/56, felt like I was having a heart attack. I went to ER again, they reassured me again I was not going to die that 100mg atenolol was too much for me go back to 50mg. My PCP disagreed, wanted me to stay on 100mg finally got him on board to lower back to 50mg, started feeling better but still not great and had these heart palpitations ALL THE TIME so got the docs PA to write me a referral for a Cardiologist which he was totally against, said I'm only 29, I've had full blood work, multiple EKGs, 2 chest X-rays, heart is healthy, etc.

Well in my first appointment with cardiologist, he came to the conclusion I may have sleep apnea and ordered a sleep study immediately as well as a halter monitor & heart ultrasound. Meeting with him on 9/25 to learn all results but as I've mentioned, I got a call from the medical supply informing me I have a CPAP machine on order, so I already know I have apnea. I just am curious if any of you have some of the same symptoms I've had and if anyone is on atenolol as I'm sure that's caused some symptoms & side effects.

Here is a list of my symptoms I've had since February 28th of this year...

Racing pulse
High blood pressure
Heart palpitations/arrhythmia
Dizziness
Near fainting
Nausea
Fatigue
Excessive daytime sleepiness
Frequent urination
Pretty frequent Diarrhea and constipation
Blurry/double vision, especially when reading text or looking at lights
Occasional Migraine headaches
Almost daily headaches
Neck aches
Head pressure mainly by left & right temples
Irritability & mood changes
Hot & cold flashes running throughout whole body kind of like a flushing sensation
Electrical sensations throughout body
Muscle spasms & twitches
Sharp pains in limbs, side, back, and shoulder/chest
Pins & needles sensation in limbs
Tingling in limbs
Limbs falling asleep quite often
Shortness of breath occasionally
Feeling off balance and kind of a swaying feeling, almost like I'm on a boat like legs are going to give out. Maybe like equilibrium is out of whack?

Well I think that's about it, at least all I can think of but this has been such a scary year and I've been afraid to go on walks and leave the house for fear that ill faint and crack my head open or crash my car, so I've been a COUCH POTATO since 2/28 and I woke up 3 weeks ago with what I thought was a bad Charlie horse but it turned out to be a DVT (blood clot) in my left calf!! My dad has had 3 clots and my healthy bro has had 1 but they were all from trauma and they were tested for Leiden factor V which they had so I just found out in August I have it and my PCP was pissed I had the PA order the test then he told me I have the gene mutation that makes us more susceptible to clot but not to worry, I wouldn't get a clot unless I had blunt force trauma, then a week or two later I get a damn clot!! [/quote

Hi Brian - welcome to the forum. I can relate to some of what has happened to you; I experienced a pulmonary embolism in January 2013- docs still have no idea why I had it - no trauma, no family history, no clotting disorders, genetic indicators, etc. Scary when the docs have no idea!

In June of this year, I went to ER twice due to sudden onset of intense dizziness. Had it every day of that month, at some level. Like you, I was afraid to drive/ leave the house for fear I would pass out. Again - docs have not been able to determine the cause to date.
In June, I had to change PCP's due to new insurance. New doc's office secretary told me "You don't have sleep apnea because you are born with it; if you have it, you've had it all of your life." (she stated this in front of the doc, and he agreed with her.) Yes - I wanted to slap the h*** out of both of them
New doc would not give me a referral for any specialists, nor for apnea test.
I changed docs by end of June, then had to wait til August to see new doc #2. I was tested and diagnosed with sleep apnea by end of August, and have been using cpap since end of August.

From your posts, it sounds like it may be of benefit for you to change PCP's when you are able. Also - have you ever been tested for a thyroid disorder or diabetes? These conditions (as well as others), can cause many of the symptoms you listed.

Most other members who have responded to you are giving you valuable information; keep reading There is a TON of useful information here, and great support from many users

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