Lived Experience Forum

[Griff25]

Hi all

New to this so bare with me. i want to ask others about how common sleep apnea is amongst forum users. Even though i have presented as exhausted to my dr and shrink for at least 10 years it was finally suggested i get tested by an eye specialist. When i went to the sleep test i was told by this service if you cant afford a machine told bother getting tested. This was very confronting. Find out my results Wednesday. i have been obese for years since all my treatment medications and quitting smoking. Everyone is telling me how my quality of life will vastly improve with treatment. I feel so disappointed this was not picked up earlier. I can afford the machine. Who out there may know they have it but not be able to afford the treatment of a $2000 machine. I am getting quite passionate about this issue and would love feedback. If you have symtoms please get tested. The out of pocket expense is $120. Evidence seems to show apnea mimics some mental health issues

[CherryBomb]

Hi @Griff25

Welcome to the Forums.

Off the top of my head I can't think of anyone on the Forums that has sleep apnea.

But you raise an interesting point to get assessed by your doctor if you suspect that you might have symptoms.

I can understand why you are feeling anxious about getting the results, particularly when the treatment is quite expensive. Could you speak with your doctor once you get the results to see if there are any other alternatives to treat it?

CB

[kato]

@Griff25

Hi griff, about 8 years ago, i think i was around 25, my now ex wife, told me that i stopped breathing during the night, and i had quite heavy snoring, which was a touch odd, because i was not overweight, so i didn't really believe it, from everything that i had read, it was not very common in people of my build, i was about 68kgs and 5'8 so rather slim.

Anyway, so i booked in to have the overnight test done, which confirmed that i had obstructive sleep apnea, which made a lot more sense, i tried using a cpap machine for a few months, but found it such a hindrance that i was getting not much sleep, and i was still snoring and suffering, so i spoke to the sleep dr person, and they decided to perform surgery on my nose internals, i have always had snoring issues, i had my tonsils and adnoids out when i was young.

I had the surgery, it really is not fun at all, the most painful and horrible thing i have ever encountered i can't understand why people would go through plastic surgery, end result i still have minor sleep apnea, but it does not affect my sleep except when i have a severe cold.

What a lot of people don't realise is it can be obstructive that they are suffering with, and it is not diagnosed because a lot of what you read refers to weight being the issue or how you sleep.

Just thought i would share my expierence

[CherryBomb]

Thanks for sharing @kato!

[Neito]

Griff25,

I just joined today, and low someone else has recently posted about Sleep Apnoea, a problem I have had diagnosed about 5 years ago, and thought was managed, until today. I too suffered from non-specific lethargy for most of my life and was seeing several GPs, including diagnostic specialist GP, without any positive test results, until I was nearly in a vegitative state of constant exhaustion. My first sleep clinic was public, and my first sleep doctor treated me badly, on reflection most medical professionals treat me badly, for reasons which are now obvious. The treatment only provided some improvement, after six months I did not feel like "superman", there was some other problems, which I did not get diagnosed with until last year, which I feel I have to mention later.

Since purchasing my CPAP machine with help from private health fund and an overly helpful parent, I have had a number of problems with the accesories for the CPAP and my own health has required changes to the settings. Most recently, the chin strap I wear under the mask has become loose with wear, and I am unable to adjust it any tighter. I had not thought this to be an overly important issue, but most people with Sleep Apnoea do not know what is going on while they are asleep. It might seem either obvious that you are not conscious while asleep or contradictory that you don't realise your keep waking up. The lack of oxygen affects memory, so you may not remember why you took your mask off 40 minutes after putting it on. If you have less or more apnoeas, you mostly will be unaware of the change, because for most sufferers, the apnoea usually only half-awakens part of the brain.

So back to today, checked my CPAP machine for the results of last night, (it is the type where the user can easily access that information on the control panel), and the numbers were bad, particularly the air leakage, so I got the chin strap fixed, and hopefully tonight will sleep better. But my advice is, even if it doesn't feel like it's working, or if you have been using CPAP for so long, you don't think you need it any more, it is still necessary. If you suspect something is not perfect, get it checked, because you probably don't even know for certain, what is happening while you sleep.

Also I might add, my current bugbear is multiple conditions with similar symptoms. It is a bugbear because current professional medical testing schemes work very hard to try to eliminate similar diagnosis. This prevented me from being treated, because no doctor could find one diagnosis which fit my symptoms. This year I turn 41 years old and have three professionally diagnosed conditions which affect energy levels from birth. In my memory, I started having symptoms of Sleep Apneoa when aged 4, Asperger's from age 4, ADHD from age 5, I probably had symptoms earlier, but have few memories before age 4 as expected. I was diagnosed for Sleep Apnoea at age 35, ADHD at 39 and Asperger's at 40.

If you are a medical professional who knows the history of any of these conditions, you will know that I was too old for early intervention, which is the main focus of treatment for all three. Now it is very difficult for me to receive additional assistance, because there are very few programs I am entitiled to. I need to access most of my treatments through private, although mostly medicare subsidised providers. Because I need more than 10 counselling sessions per year, this financially limits my recovery, so my only long term hope is that I am elligible for NDIS in 2016 to 2019, which is already appearing to be unlikely.

So in your situation, if you are diagnosed positively for Sleep Apnoea, it does not necessarily mean your mental or psychiatric disorder is going away, or that the Apnoea was the cause of all the psych problems. It certainly will help, more in the long term than the short term, but I think it would be rare for even a mild condition to be 'cured' by combination with CPAP or surgery. From my experience, which weighs a lot more than a research paper, Apnoeas not only mimic some issues, but also can make other issues worse, and can hide some issues in another layer of complexity. Although, my Psych issues became more recognisable after long term CPAP, because the improved energy allowed more consistant clarity of thought, allowing me to express what was going on inside my head. You will probably experience some of the same things, and change your outlook on mental health.

I hope my experience is helpful to you in the future.

[NikNik]

Hi @Neito

I'm so sorry that you had to go through all those experiences, and I'm so grateful that you shared. 

@Griff25 I hope you've found these responses helpful. How did you go with your results?

[Appleblossom]

I had an adult music student go through the process of diagnosis for sleep apnea and became amazed at the increasing prevalence of its diagnosis.

I am struck by your comment that evidence suggests it mimics some MI symptoms.

i have also had significant sleep issues over the years, but not thought it worth pursuing getting a machine to sleep with for myself.

Unfortunately, the machine did not really help this student overall as it was something his wife loudly complained about the cost.  She was a bit of a standover merchant to a gentler soul.  His alzheimer's deteriorated, but at least he has his music.

[500bluebirds]

Hi @Griff25,

Although late to the discussion, I hope this is helpful.

I was diagnosed with Severe Complex Sleep Apnoea, in February 2015, with approx 60 apnoeas per hour. At the time I was roughly 85kgs and 5'3".

Like all drs and specialists I've been shoved off to, no one gave me any information until I had done their tests and was sitting in front of the doctor with the results. The first appointment alone was +$400. The CPAP machine was going to cost more, especially if I were to rent one. I was told I would be on it "long-term" (which I now know is like a life-sentence).

I asked if there were any alternatives, or things that can help manage the condition without the use of cpap. I went to 2 different sleep drs and both gave me the same reaction and the same "no-option" speech. They fully expected me to fork out all this money from nowhere and just do what they said without question (and both drs hated me asking questions). I said that I needed to go away and think on it for a bit. I ended up seeing other doctors: I gave them my results, told them exactly what the sleep drs told me, told them my concerns and how they were just being ignored or dismissed, and I asked if there were anything that could help at all (including diet, breathing exercises, walking, etc) - harmless things.

Before end with where everything is at + my treatment plan.. I want to list my symptoms:

daytime tiredness, somnolence, unrefreshing sleep, poor concentration, low or nil energy, heaviness in limbs, weakness in limbs, frequent nightmares, mixed parasomnias, irritability that doesn't go away, positional breathing difficulties, depression (diagnosed 2010. occurring for much longer), anxiety (diagnosed 2010 with depression. "generalised", associated with sleep, social, +more), shallow breathing, frequent deep sharp breaths in (or gasps), iron deficient anaemia, lowered thyroid function, restless legs, unexplained pain and swelling in legs (since 2012).

Sleep drs disregarded my anxiety and worries towards the cpap masks (I experience sleep paralysis so I don't like having things on or around my head/face/neck. I experience anxiety & noct. paranoia, often feeling on edge. Have nightmares. Various pains and discomforts despite a comfortable sleeping environment. Sensitive skin and prone to acne). There's just a s-load going on and they weren't taking me seriously.

I'm now seeing a Physician and am monitoring my general health. My Dr is really nice and understanding. Said the best treatment is to lose weight. They said that they know it is really difficult, especially when you're dealing with so many extremely painful and energy-zapping symptoms... so I'm just taking it slow. Nothing is asked of me except that I see them in 6months to check how I'm doing 🙂

It is difficult to tell what belongs to a physical problem, a mental issue, or a medical concern. The thing I get told most often is that it's all linked to my medication, and unlikely due to my mental state. However, I get told different things by different drs, and they point fingers at different problems. The best you can do is to monitor your condition, confer with your treating doctor/s, keep talking about different options, and ask questions. 

I apologise if I've waffled on.. but I hope your SA has improved or is being managed well enough for your symptoms to improve, and better the quality of your life.

All the best,

BB

[Justdance]

Try some of the following treatment methods to relieve sleep apnea, so you don’t have to rely on a machine for breathing.

1. Almonds

This sounds too simple to be true, but almonds are one tasty way to help improve sleep apnea symptoms. These nuts are high in magnesium, which stimulate sound sleep and muscle relaxation. When the airways are relaxed, you can breathe more easily. Try eating 1 ounce (about a handful) of almonds each day or try some almond butter about an hour before bedtime.

2. See a Chiropractor

Most people who suffer from this sleep disorder have problems in their upper cervical spine, and sometimes even problems with the lower spine. When your spine is out of alignment, it compresses the nerves, interrupting signals between the brain and the respiratory system. A typical problem for those with sleep apnea is that the head is shifted forward more than it should be, which puts stress on the airways. See a chiropractor and explain that you have sleep apnea. They can recommend exercises and take the necessary steps to help put things back in alignment.

3. Honey

Another tasty way to beat this sleep disorder! Honey is full of anti-inflammatory compounds that reduce the swelling in the throat that can obstruct breathing. Honey will also lubricate the throat, which will help to prevent snoring, one of the most common symptoms of this disorder. Honey encourages relaxation and promotes healthy sleep patterns. Add one tablespoon of raw honey to a glass of water and drink about one hour before bedtime.

4. Cinnamon

This spice has been used in Ayurvedic medicine for hundreds of years as a sedative, which can encourage better sleep and help to treat breathing problems. Make your own cinnamon tea by mixing one tablespoon of grated ginger and one cinnamon stick to one cup of water. Boil for 5 minutes, strain and cool. Add a teaspoon of honey and drink each night about one hour before bed. An alternate method is to make a paste using two teaspoons of cinnamon powder and a bit of water. Apply this paste to your chest, throat and forehead. Allow to penetrate for about five minutes, and then rinse off with water. Do this each night just before bedtime for best results.

5. Try a New Pillow or special CPAP machine

There are numerous pillows or special machine for sale that will position the head and neck so that the airways remain open and clear, allowing for easier breathing. These are available online or in many medical device locations that sell other items such as crutches or wheelchairs for example you can watch a little list of best and cheap CPAP machines http://healthyhowardmd.org/cpap-machines/ to choose something then . 

6. Garlic

This is a great home remedy for treating sleep apnea. Garlic has anti-inflammatory compounds that reduce inflammation in the respiratory system, which will improve breathing. Garlic will also prevent snoring by helping alleviate enlarged tonsils. Crush two cloves of fresh, organic garlic and allow it to sit for a few minutes, and then swallow them whole. Follow with a full glass of water. Do this once each day until your symptoms improve. Find out : Essential oils for snoring and sleep apnea

[Shaz51]

Hello @Justdance, welcome to the forum

very interesting my friend