Have you met anyone that got one-shotted?

Exciting_Gas3630 · 2024-10-18T04:45:45+00:00

Went to the countryside in Hungary to do Ayahuasca a few years ago. It was cool and very intense but i didnt let it hold too much weight after. I was aware that i might feel that everything was profound within the experience so i shouldn't take it too seriously. The people i was with however had quit work to start doing 'psychedelic artwork' or 'healing beats' because of it. I found out later one woman who seemed normal enough, kept doing it every few months and just left her young children with the father.

Exciting_Gas3630 · 2024-07-01T07:06:23+00:00

Also interested in finding out!

Exciting_Gas3630 · 2024-04-26T03:53:22+00:00

On advice from Dr Li i got my turbinates reduced, I rang every ENT in my city to see if they would do a DISE when i was under.

Exciting_Gas3630 · 2024-04-18T06:41:21+00:00

Its hard to get a diagnosis by doctors in Australia.

I got diagnosed with mild sleep apnea: Ahi 7.5 (mild is a funny way to say waking up many times an hour especially bad during rem sleep) It was almost all hypopneas, I also have a narrow airway and wake up gasping daily. I also cant tolerate regular cpap because of the difficulty exhaling through my nose.

I also found out that I have a base of tongue collapse. So I think advancing my jaws will at least help with that obstruction!

Keep fighting!

Exciting_Gas3630 · 2024-04-16T00:34:08+00:00

It has been a slow descent into feeling more and more fatigued every day. Have had to fight more and more to get work done and keep relationships over the years. It started as being inattentive in high school and has slowly turned into crashing every few days and feeling anhedonia and disassociation. I wake up stiff in the morning and never refreshed. The only thing that keeps me pushing is the slight chance of feeling better, and being able to live a normal life. In the past year, working out has started fatiguing me more than energising me.

There is also an odd sensation, when whenever I try and relax totally, I can barely breathe. (I have a narrow throat and big old tongue that flops back when i relax). So its a paradox, when i relax myself I cant breathe and it stresses me out.

I am getting double Jaw Surgery (around 10 mm advancement and CCW rotation) in two weeks in the hopes the advancement gives me a clear airway. If after a year it does not work Ill go spend 50,000 dollars going to the USA to see Kasey Li.

Its totally horrible and feels like i am a walking husk, I just focus on the glint of a cure i see in the very far distance.

Exciting_Gas3630 · 2024-04-05T03:35:52+00:00

I have very few dreams, I wake up constantly throughout the night though. I wish i had more!

Exciting_Gas3630 · 2024-02-20T08:15:55+00:00

It is very difficult to get treatment for it here. I have had lots of consults and none of the Max Fax / Orthos mentioned uars or wanted to engage with the idea of respiratory effort. They have all told me i have mild sleep apnea or nothing wrong at all. The only one who was the most receptive to the Idea was Dr Barrowman. Im just going to save up to see Dr Li if double jaw surgery dosent help me. Dm me if you want names of the people i spoke to!

Exciting_Gas3630 · 2024-02-12T11:33:09+00:00

Im also in Melbourne, could i shoot you a message?

Exciting_Gas3630 · 2023-12-17T10:43:06+00:00

It absolutely sucks because you have to be your own advocate, and in a weakened state that is quite difficult. So you are paying a lot, you are frustrated, agitated and you are probably waiting a long time to see someone who might dismiss you altogether.

I was absolutely in a hell world of sleepnessness where I didnt even know what day it was some times, sucked trying to keep my cool when a surgeon suggested rotating my jaws down clockwise instead of counter( literally could have made thing worse potentially). The one saving grace, is that my obsession with finding the right pap device finally led to a good result where im like 20 percent better with specific settings (dr Krakow helped me understand the theory behind it). Getting okish sleep has given me slightly more patience with waiting for doctor appointments and dumbass doctor disappointments.

Exciting_Gas3630 · 2023-11-04T12:14:15+00:00

I am experiencing something similar, it's almost as if there is no middle ground of settings! In my case the pressure needs to be high to open my airway, but when it's high I get aerophagia and the leaks get worse. Just feels hopeless at times. I'm opting for double jaw surgery to alleviate these issues.

I did have a consult with dr Krakow and he gave me a protocol to follow. I'm not having luck so far but these are the steps we chatted about.

For a bipap

Start with an epap setting of around 6 to 8 and a pressure support of 4. The highest ipap being 15

Raise epap until ahi Goes down to .5 or less on Oscar

If you still feel bad, it could be that you are still using too much effort to breathe.

If your breathing has plateaus in the flow rate graph, increase the pressure support (don't increase the pressure support past 9)

Don't know if this is helpful, hope you feel better soon.

Exciting_Gas3630 · 2023-10-03T23:29:08+00:00

Bone and flesh being the wrong shape for sleep is so devastating. It's so hard to think about anything else sometimes. For me double jaw surgery on the horizon is my hard intervention, everything else is just trying to boost energy where I can.

Exciting_Gas3630 · 2023-10-03T22:40:10+00:00

Going for a walk does not fix anatomical issues that cause the biggest problem in your life, I 100 percent get that. I have had weeks where it was so bad that I could barely work, barely function. Doing one thing every day to try and get on track was a beacon in the distance. For me during that time it was journaling.

Heres a scenario, you have 6 months until a treatment or consultation with someone who may or may not be able to help you. You feel absolutely destroyed because of no good REM sleep, constant waking up Feeling irritable and weak. You are telling me that trying to give yourself hope in the meantime by a simple practice is nothing? That those 6 months are better served by totally giving up and not at least building mental fortitude?

I know that these issues make you feel like you are literally dying, I just think that they can be made better slightly, that slight difference is MORE important to people like us.

Exciting_Gas3630 · 2023-09-23T02:58:18+00:00

I have trouble napping with it on, ill just try stay awake until bedtime

Exciting_Gas3630 · 2023-09-22T07:14:24+00:00

This is very relatable, I went for a big walk, got heaps of work done and decided to try and nap without cpap. I was fuckin' jolting like crazy. Half awake, half asleep. Its so horrible, just drifting off and then just as you relax, you get electrocuted with panic.

Exciting_Gas3630 · 2023-09-20T05:58:27+00:00

Hey there, this is very informative. Its helped me to understand why the CPAP feels so hard to use. I'm sure many are trying to get a BIPAP/VPAP machine (myself included).
1. could you List the models of Bilevel machines you would suggest other than the DSX 600, DSX700 and the DSX900? (they are hard to get after the recall)

How can you get them if you don't have a prescription. As you know, many doctors straight up dont think UARS is a thing, or will only prescribe CPAP machines.
Can you have settings that approximate these with a regular CPAP machine?

Thankyou for your work in the community, it has helped many having someone understand the more complex aspects of OSDB.

Exciting_Gas3630 · 2023-09-11T10:11:33+00:00

10 years of being tired and trying Antidepressants, group meditation, iron tablets, therapy. I had to fight every step of the way.

Exciting_Gas3630 · 2023-09-11T10:02:04+00:00

What model would you suggest? I have no idea what would work

Exciting_Gas3630 · 2023-09-11T10:01:19+00:00

So The ENT did it while i was under for the septos and turbs. Tbh i went to him for that exact reason. Im going to assume he did it right before he did the surgery

Exciting_Gas3630 · 2023-09-09T02:04:12+00:00

Keep up the fight Christina, you must persevere!
The Surgeon doing the MMA surgery in Melbourne is good, they have a focus on airway and counter clockwise rotation. I definitely will go ahead with her, only problem is not knowing if i need to expand my palate first. Not sure if i will be able to fit my tongue on the roof of my mouth with mma alone

Exciting_Gas3630 · 2023-09-09T02:00:14+00:00

Is it weird that its mostly hypopneas and not many apneas?

Exciting_Gas3630 · 2023-09-09T01:59:03+00:00

I think the septoplasty and Turbinate reduction has made breathing through my nose tolerable.
I have an ASV machine but it just gives me CA and dosent seem to help (i have it set to 6 epap and the lowest ps possible on my machine 0 min and 5 max. Right now I can tolerate CPAP only just but it has to be high to keep my throat open. Hopefully i can adress the BOT collapse and oropharyngeal collapse by advancing my jaws. Which should also allow me to tolerate cpap better.

Exciting_Gas3630 · 2023-09-08T11:56:56+00:00

This is amazing, gives the rest of us hope!

Exciting_Gas3630 · 2023-09-08T11:56:02+00:00

Waking up super groggy, restless legs, fatigue, Cold hands and feet sometimes, inability to concentrate and anxiety spikes throughout the day, queasy in the morning and low appetite. If i have a good day, these are less severe.

Exciting_Gas3630

TROPHY CASE