Dealing with probable but undiagnosed sleep ... - Sleep Matters

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Dealing with probable but undiagnosed sleep apnea


So I got sort of a diagnosis of benign fasciculation syndrome over a year and a half ago, and have been in misery since dealing with it all the time. It basically means random muscles around my body twitch sporadically, sometimes constantly, without stopping. I saw three neurologists and all of them said it's benign... but that doesn't mean it hasn't had a major impact on the quality of my life. So I decided a few months ago to keep a health journal...

In this journal, I captured every day, my symptoms, diet, sleep patterns, blood pressure, and stool. At first I was certain it was a dietary issue. However now it's almost too obvious. Every time I sleep a full 8 hours without waking even once, even just lightly waking and drifting back to sleep, I have no twitching at all the day after. If I wake even a little at night, or wake up a few times, then the next day is horrible twitching all over, sometimes in a hotspot on an arm or leg where it twitches continuously for hours.

I'm trying to get a sleep study, even though my insurance won't cover it or a CPAP. My insurance will only cover it if I do a sleep study and get surgery for something immediately after.

I have a deviated septum which my ENT doesn't want to operate on because he thinks I've had it my whole life and it shouldn't be such a problem suddenly now(I'm 40). I tried nasal strips, antacids, and melatonin 6mg before bed and that seems to really help about 80-90% of the time.

Has anyone found any other methods for maintaining consistent good sleep for many nights in a row without necessitating a CPAP? Or is a CPAP absolutely necessary? They are so expensive and I'm not sure how I'm going to afford it, where I live they're around $3,000 each...

10 Replies

Hi, I can empathise with your many problems. It looks like you live in America from your spelling of Apnea and mention of Insurance, I live in the UK and I am twice your age but have has the same problems as you for the last 35 years but it took so long to diagnose my O.S.A. that I have only been on cpap for 15 years and it is a life saver. It seems strange for you to say that cpap machines are expensive if you are in America because I buy all my supplies from there and always have done because US prices are much cheaper than European. I deal with a company which does sell new machines but also lots of refurbished/sanitised machines at great prices. If you are interested I will turn up my corespondence with them when they said that they had in-house staff who could provide machines without prescription as long as it was an automatic or you knew the pressure setting. With regard to the mask I can talk you through the sizing but you need to decide if you are a nose or mouth breather, after that all you need is the tubing. I also had a deviated septum and had an operation where the lumps and bumps were lasered off but I would not advise it, three weeks later I had a nose bleed which put me in hospital and the within a few months I produced so much scar tissue that I was back to square one. With regard to the muscle twitching, I have had and still get this all over my body, mainly over the sites of vital organs, my Doctor was great and prescribed Diazepam 5mg up to 4 times a day. I have been on Diazepam for the 20 years but I only take them when I need them and they are super effective and quick acting. Please keep in touch if I can help.

Hi, I lived with Sleep Apnea for years without realising it, it was only when I did my own studies by keeping a record of possible symptoms and posted it on this site that someone suggested I might have it so I duly went to my doctors and after the written test was sent for a sleep study and I did indeed have severe apnea and was put on CPAP immediately. I am so claustrophobic I really didn't know how I was going to cope with a mask, but thank goodness I managed with the nose cushions and a chinstrap ( 5 attempts to get a good one ) , now it is second nature and had improved my life beyond description. My heart cardiologist is convinced it caused my Atrial Fibrillation issues and believes in time things will really improve with my heart. I also buy my extra supplies from USA as you can't get them over here even though the ResMes machine is supplied by out NHS. The machines you can buy in the UK for circa £600. Good luck and hopefully the website Swindonian recommended will help.

We can have different sleep issues, and to sleep better, we need to deal with all of them.

So you have 1 deviated septum which may be impacting on your oxygen levels 2 possible sleep apnoea (weak throat or other muscles interrupting oxygen) 3 possible insomnia, perhaps in response to the stress of one of the other issues.

I'd get pulse oximeter and check your oxygen levels when you wake at night. These can be cheap, c $30. That should give you a clue as to whether your insomnia is the cause of the twitchiness or a result of low oxygen levels.

If you think apnoea is a cause or partial cause of your issues, kook at throat muscle strengthening exercises, join a choir (!). Singers rarely get apnoea. Others have given good advice on CPAP.

Deviated septum. My son, now 24, has a deviated septum. He is waiting for a proper assessment. In the past, I regretted not having operated, but now, having heard a couple of horror stories, I am not so sure, In his case, I think he generally gets good sleep unless he eats too much wheat or overdoes alcohol and sleeps in a bad position. I'd exhaust other ways of opening the nose before going for an op. Nick Littlehales recommends the Rhinomed nasal dilator. I have no experience of it but it is cheap enough to try. c $20

On insomnia, I'd try the Zeez Sleep Pebble. I am biased (co inventor). I think it is the best. You could also try the Neorhythm or Modius Sleep. I wouldn't use sedation. You need real sleep. If you want to try a herb, you could try American skullcap.

Finally, and importantly, I would supplement with a good magnesium and make sure that I had enough potassium in my diet. Given that you are stressed you will be depleting magnesium, and it is essential for good sleep and often linked with twitchiness. I think this is a good one I'd also take a good multivit/ multimineral - something like Nutri or Thorne, so that you get the selenium and iodine that ar nexessary to make the most of magnesium. Good Luck! Let us know how you get on.

Wow thank you everyone! This is all super useful information!!! I'm going to check out the nasal dilator and the pulse oximeter. Both looks like cheap and easy things to try first. I'm going to try and get a sleep study done soon as my insurance just said they may help with it, but they won't help with a CPAP. So I need to figure out how to get one at a reasonable price.

#1 with your doctor's approval, try 2 to 3 tablespoon full of cacao/cocoa powder at night

#2 for me, if #1 fails, add DMAE; read up on my other posts

#3 no CPAP anymore for me; my oximeter tells me daily my AHI is around 3 to 9 depending on the SALT (biggest enemy); lower SALT means lower AHI for me

#4 without above treatments, my AHI ranges anywhere between 20 to 35; numbers don't lie

For the pulse oximeter, I haven't read up on how it works yet, but is it something I wear overnight to get a reading over a period of time? Or is it a once or twice thing that I do at night and in the morning?

Have you had a sleep study or not?

I finally had the sleep study, the results were not great, and although I don't have bad apnea, my blood oxygen level goes up and down between 95 and 90 often and I snored through the entire test. It also showed I had frequent movement. So the doctor referred me to an ENT to discuss the options for fixing my nose, getting my tonsils removed, and/or a CPAP. He said likely I'll need a CPAP at the least, but he said my throat was too narrow which can also cause problems.

So they put me on a CPAP for a month and said at the end of the month will decide whether to do surgery or not. Had my first night with the CPAP last night, was very hard to fall asleep, I think because I'm not used to breathing only through my nose for a very long time. The sleep doctor said we need to rewire my brain to start using my nose for breathing again. The mask is comfortable though and I kept it on the whole night, just had trouble sleeping though.

It sort of felt like my breathing is not a set pattern, I take some deep breaths and some short breaths and the CPAP seems to follow a pattern with pushing the air. That also sort of confused me a bit. It never felt like I was breathing normally, I felt more inclines to try to follow the pattern of the CPAP where I would try to breath in when it pushed the air and breath out when it reduces the airflow a little.

OK, been three nights now, I'm starting to get used to the CPAP. One thing I noticed though is that before using it, I would be cold at night and need a heavy blanket. But with the CPAP on, I feel like my body temp goes up and I push the blankets off at night because I get hot. Is that normal? I also feel my heart racing a bit when I wake up, not sure what that's about.

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