A CRY FOR HELP, Is this only sleep apnea

hi
im a 28 year old from Australia and my life is hell.
the past 12months or so have been the most challenging on my entire life.
. Im hear to share some things i have been experiencing and would like to get your
opinions on whether or not you think the symptoms are linked to my recent OSA diagnosis
because i feel so terrible im finding it hard to believe a lack of sleep is the root cause. I will try keep it compressed for now as not to bore people.
on a daily basis i have been experiencing the following

...tired all the time and sleeping 9hrs a night
...Blured vision/eye floaters
...shaky hands
...depression , suicidel thoughts
...lost of coerdination
...cant do my job
...brain fog
...hallucinations
...depersonalization
...disconnected from reality
...headaches
...vommitting in the mornings
...diahrea
...heart palpatations

My home study test said 29.1 AHI and have been on CPAP for 2 weeks. ive had multiple blood test done and nothing serious showed up. been to 7 doctors and ENT.

i can share more info but initially would like to know if anyone thinks that everything i have been suffering through could be sleep Apnea. and is it common. im not sure how much longer i can cope and this is a cry for help. thanks

You are dealing with so much difficulty -- my hat's off to you for your strength in coping.

I don't have the medical expertise to answer your basic question, but I do know that chronic and severe sleep disruption and deprivation can lead to many health problems, even including the ones that seem unlikely (vomiting, hallucination). Sometimes other underlying conditions are part of the cause for the problem. But whether that's what's going on with you, I don't know.

Are you feeling any better with CPAP? How do your nights go? Lots of waking up, lots of time awake? How many hours of sleep do you think you get each night?

Sometimes seeing a lot of different specialist doctors means that no one doctor is looking at the big picture. Do you think there's someone who has heard you describe all of your symptoms -- and really listened?

Are you taking any meds?

Barebones wrote: ↑

Fri Jan 29, 2021 2:23 pm

My home study test said 29.1 AHI and have been on CPAP for 2 weeks. ive had multiple blood test done and nothing serious showed up. been to 7 doctors and ENT.

i can share more info but initially would like to know if anyone thinks that everything i have been suffering through could be sleep Apnea. and is it common. im not sure how much longer i can cope and this is a cry for help. thanks

Not a doctor, not trained in anything medical (aside from first aid and CPR).

You have such a large constellation of symptoms! That is quite a lot to deal with, hats off to you for working through it!

My opinion, which you can write on toilet paper and use accordingly, is that you have more than one thing going on. The AHI means you definitely have a sleep breathing disorder, that there's no doubt of, and it is definitely contributing to at least some of your symptoms. I would be very surprised if your only issue is sleep breathing.

I assume and hope you have more than a primary care doctor involved.

Are you willing to list your current medications? I have some suspicions....

Male or female?

Have you been tested for fasting blood sugar? MANY of the symptoms you list could be either diabetes or hypoglycemia, especially in the morning.

Have you seen a neurologist?

Are you being treated for anything other than OSA? (related to the 'what medications' question).

In Australia, do you have known issue with tick-borne illnesses? There are a few here that can cause a similar constellation of symptoms.
I'm sending my thoughts and internet hugs for you!

Hi Barebones,

That's quite a list. But oddly enough, I have a list of symptoms on my desk which pretty much matches yours. I got my list 30 years ago from a compatriot of yours, an Auzzie doctor named Claude Lum. He's no longer with us now, but he was pretty well-qualified in his day. FRCP, FRACP if that means anything to you.

He had a simple message for his colleagues in medicine and also for us patients. When all the tests and examination procedures and scans have been done and "there's nothing to find" – and yet the patient still has some, or most, of these symptoms – then it's worth asking: could this be hyper-ventilation syndrome, or HVS?

It seems too easy an explanation to some people, but chronic unbalanced (or over-) breathing alters the acid-alkalinity of the blood. And if it is present for long enough, then every one of the symptoms that you list, Claude Lum found that symptom in one or other of the patients who got sent to him as a specialist in chest medicine, and who he had examined and tested, and for whom he had eliminated all the possible 'organic' reasons for their symptoms.

The treatment, he said, is both simple and low-cost. You do special breathing exercises five times a day – (1) to get your blood gases back into normal range, and (2) for that way of proper breathing to become a habit.

Now, I can't tell just from reading your post if the above applies to you. But given that you have seen all those doctors, and yet they didn't (you imply) find anything, then I offer it as a possibility.

If you want to follow it up, I suggest you look for a good respiratory physiologist – one who knows about Dr Lum's work, and is experienced in working with it.

The respiratory physiologist can diagnose you for HVS. And teach you the exercises. And get on your case if you get lazy and skip doing them. But if it is HVS, then there is a way forward.

I should add – from what I know – this daytime disordered breathing, to give it its other formal name – isn't necessarily connected to sleep apnea. HVS doesn't necessarily cause OSA, and OSA doesn't necessarily cause HVS. The best idea is to treat each separately with its proven 'gold standard' approach.

Rick, this is fascinating. Thanks so much for the post.

Thanks so much to all who have replied. its supporting to read.
i cant emphasize how hard it has been and is.

my story is long and i would really love to share my whole history but it would be a MASSIVE post. So ill just stick to answering your questions which i really appreciate.

The cpap i think helps , i havnt been using it long enough to show good Data. i have been reading this forum for help and thus discovered OSCAR so thanks. i now have been seeing the same doctor for that exact reason "Miss Emerita" He is determined to find the "Organic" cuase before mental. 2 doctors prior put me straight on Antidepresants without looking deeper. living with undiagnosed OSA this whole time whilst battling Antidepressant wean in and wean outs. i stopped that and felt slightly better knowing i have no medications in my body and trying to find the root cause rather than masking it with meds. This doctor has discovered i have severe Deviated Septum. I can only breath out of one nostril which doesn't help sleeping of coarse. the ENT advice me to get onto a CPAP for 3months and i will return to see him. He didn't want to discuss surgery before trying to increase my quality of life.


i am not taking any meds atm "Julie" although i am considering starting back on sertraline 25mg..dealing with these symptoms day in day out messes with your head. i need help. i was on sertraline 50mg for 6years leading up to the end of 2019, LONG story short i haven't been on anything for around 8months i think. everything has been a blur so im not confident on time frames sorry.

khauser wrote: ↑

Fri Jan 29, 2021 4:19 pm

Are you willing to list your current medications? I have some suspicions....

Male or female?

Have you been tested for fasting blood sugar? MANY of the symptoms you list could be either diabetes or hypoglycemia, especially in the morning.

Have you seen a neurologist?

Are you being treated for anything other than OSA? (related to the 'what medications' question).

In Australia, do you have known issue with tick-borne illnesses? There are a few here that can cause a similar constellation of symptoms.
I'm sending my thoughts and internet hugs for you!

. im a male 75kg 183cm tall "khauser"
at this point i only have one doctor involved i live in a small town and choice of doctors is quite limited. i have not seen a neurologist. not sure on the blood fasting or tick borne illness.

some things that did return positive and (i didnt even know) in past pathology were.
ross river virus- common in my part of aus
galandular fever
gilberts deseise

Apnea is often diagnosed as depression and if you can afford it I'd try to get referred somewhere that has a real sleep center and sort things out - too often small town docs are unfamiliar with points of apnea and don't know how to properly diagnose it. We call glandular fever Mono here and it can leave you with symptoms of tiredness.

I'm glad to hear you have a doctor who is committed to finding an organic cause for your difficulties. It sounds as though he listens well.

I'm really fascinated by what Rick Blaine has posted. You might want to look at this article by Lum:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1290766/

If you read all the way through, you will see a great many of your symptoms mentioned. I'd suggest sharing this with your doctor.

One of your positive tests was for glandular fever (better known here as mononucleosis). Fatigue with mono can be profound, and it can linger for some months. I wonder when you had it?

Would you like to post an Oscar daily chart or two, just to see if anyone has observations or suggestions?

Thanks again for all your replys.
What do I need to upload from Oscar in order for you guys to have a look at my cpap data? I have been using it almost every night and think should have some good data now. Be great to get your opinions.
Thanks

Barebones wrote: ↑

Thu Feb 04, 2021 2:17 pm

Thanks again for all your replys.
What do I need to upload from Oscar in order for you guys to have a look at my cpap data? I have been using it almost every night and think should have some good data now. Be great to get your opinions.
Thanks

like this-

How to order the charts
When you start Oscar and select Daily view, you will see a page with information on the left, and charts on the right.

Each chart has a name displayed on it vertically on the left side of the chart.

Drag the Oscar window to use as much of your screen as you can, so that you can get as much info as possible.

You can move a chart up or down in the order by pointing your mouse pointer in the label part of the chart, left clicking and holding while moving the mouse up or down.

and-

Suggested Support Order for your charts
Event Flags
Flow Rate
Pressure
Leak Rate
Flow Limit (Only for Resmed machines, not on Respironics)
Below these charts, you can organize the remainder any way you want. We normally don't need, or want, to see those, because they end up scrunching up the charts we do want to see.

Left Side Calendar Off
On the left side, we want to see the calendar collapsed as monthly display is not of interest and it will end up hiding other info that will be wanted. We also want the right panel turned off, because it needlessly compresses the charts.

If you are using the F12 or screen shot function, it will automatically minimize the calendar and turn off the right panel for you and return it back to what it was set to when done.

You can hit F9 and F10 to turn off the calendar and right panel

the above is from the cpapwiki which can be accessed through the very top of the front page.

good luck!

im not sure if this all you need .

zonker wrote: ↑

Thu Feb 04, 2021 5:04 pm

Barebones wrote: ↑

Thu Feb 04, 2021 2:17 pm

Thanks again for all your replys.
What do I need to upload from Oscar in order for you guys to have a look at my cpap data? I have been using it almost every night and think should have some good data now. Be great to get your opinions.
Thanks

like this-

How to order the charts
When you start Oscar and select Daily view, you will see a page with information on the left, and charts on the right.

Each chart has a name displayed on it vertically on the left side of the chart.

Drag the Oscar window to use as much of your screen as you can, so that you can get as much info as possible.

You can move a chart up or down in the order by pointing your mouse pointer in the label part of the chart, left clicking and holding while moving the mouse up or down.

and-

Suggested Support Order for your charts
Event Flags
Flow Rate
Pressure
Leak Rate
Flow Limit (Only for Resmed machines, not on Respironics)
Below these charts, you can organize the remainder any way you want. We normally don't need, or want, to see those, because they end up scrunching up the charts we do want to see.

Left Side Calendar Off
On the left side, we want to see the calendar collapsed as monthly display is not of interest and it will end up hiding other info that will be wanted. We also want the right panel turned off, because it needlessly compresses the charts.

If you are using the F12 or screen shot function, it will automatically minimize the calendar and turn off the right panel for you and return it back to what it was set to when done.

You can hit F9 and F10 to turn off the calendar and right panel

the above is from the cpapwiki which can be accessed through the very top of the front page.

good luck!

See this thread for what is needed and examples...and see what you are missing....the stuff on the left side of the graphs.

viewtopic/t158560/How-to-post-images-for-review.html

Barebones wrote: ↑

Fri Feb 05, 2021 2:42 pm

im not sure if this all you need .

see the link pugsy provided. you've taken out the whole left side, which needs to be seen

my first attempts at posting a chart where awful. took me forever to get one up that people could see and advise on.

good luck!

eta: here's an example-

woops sorry. i thought i was meant to remove that section so i left it out. Thanks for letting me know
hows this....
Also do you need multiple days for a good analysis?
still trying to understand this all. but thanks so much for all your support. i check this thread daily for replys. so thanks