spasms low chest when falling asleep; panic; mold; dysautomia

[MarthaStett]

Hi everyone. I am new here. My question may be related to dysautonomia. For past 2 months, I have been having spasms in the middle of my lower chest, where my diaphragm is located, over and over as I am on the edge of sleep. It does not happen in the daytime.

My sleep clinic has adjusted my BiPap because of increased central sleep apnea (where your brain forgets to tell you to breathe), and they've put in an order for a new machine that will apparently breathe for me when the central sleep apnea occurs. My apnea episodes are way down with just their tweaking of my BiPap settings, but the spasms continue.

An echocardiogram showed no issues with the structure of my heart. About to do a 24-hour holter heart monitor to check electrical activity. I suspect a neurological issue due to chronic inflammation, perhaps irritation of the phrenic nerve that controls my diaphragm. It seems to be a "myoclonus": jerks, shakes, or spasms that are sudden, brief, involuntary, shock-like, and variable in intensity. The spasms or shock sensation lasts only about 1 second. Often I wake in a panic that I am dying and try to call out for help but the words won't come and all I can do is yell.

Husband just put a baby monitor in the bedroom so he can listen for me while he stays up late. My integrative doc has me on salt tabs and increased water for mild OI, but maybe I need more potassium. My ME/CFS seems to have started with CIRS (Chronic Inflammatory Response Syndrome) from water damage in our home, and I was treated for Lyme twice years ago. Has anyone experienced similar spasms? Thank you.

 

[Gingergrrl]

I suspect a neurological issue due to chronic inflammation, perhaps irritation of the phrenic nerve that controls my diaphragm.

I thought of a few tests that might be informative if you have a doctor willing to order them. The first is spirometry or pulmonary function test (PFT) to check your breathing. The second is called a "Sniff test" to check your diaphragm function, and the third is an EMG or nerve conduction test (to check the phrenic nerve to the diaphragm).

Although if they come back abnormal, then the question is why? In my case, I had a lot of abnormal tests due to autoimmunity. My case started out with viral and toxic mold exposures which caused POTS and then it all morphed into autoimmunity and MCAS. You might also want to test for autoantibodies that might be causing some of your symptoms.

Are you still living in the home with the mold & water damage? This could be another avenue to pursue (treatments for mold detox) but they would only have a chance if you are no longer currently living with the mold. I relate to a lot of what you shared although I never had Lyme or sleep apnea. I am writing fast and hope I am not causing more confusion!

 

[MarthaStett]

Thank you, Gingergrrl, for these suggestions. I do live in our water-damaged home, but only after extensive remediation and continued mold testing. I've been getting treatment for CIRS from the mold since April, and my intregrative medicine doc expects that both my central sleep apnea and the chest spasms will go away as the CIRS treatment continues. Let's hope she's right. But I suspect not. Thanks again for the thoughtful message.

 

[Gar Dee]

@MarthaStett

Have you had any change / improvements of your symptoms since you last posted? For a very long time I used to get frequent spasms similar to those you mention; always just as I was on the verge of dropping off to sleep. In fact over the years I must have lost many hundreds of hours of sleep to these. They would usually happen on nights after periods of physical or extreme mental exertion. Often they'd also be triggered by the slightest of noises. After experiencing the spasms I'd always wake up in the morning feeling like I'd been beaten up, and then suffer extensive periods of PEM - typically lasting for a number of weeks. At first I was absolutely terrified, fearing I wouldn't wake up the next day - but I'm still here decades later to tell the story! Around the same time l also had POTS symptoms and severe nights sweats. You mention you feel it's in your diaphragm; the spasms I experienced felt lower down, like they were in my abdominal region, but of course I can't be certain they weren't being referred there from higher up. Which leads to the possibility of sleep apnea initially being a factor with me also, as I'd often jolt awake very quickly after eventually drifting off, and feel very, very groggy, like I'd emerged from a very deep sleep state - even though I'd only been out for a few seconds / minutes. No doctors at the time were of any assistance to me or were able to offer any advice. I'm still convinced it was some sort of inflammation / virus / CNS issues in my lower spine, as even now if I was to over-stress my lower back (eg doing sit-ups), I can still get very mild recurrences of these spasms. Looking back, even though I worked for a period in an old and damp building, it would take a lot to convince me that mold played any part in my circumstances. Have you noticed any significant patterns before or after your own experiences?

 

[MarthaStett]

Hi Gar Dee. Those 1-second spasms in my lower center chest that woke me up over and over on the edge of sleep went away within a few days of starting the Gupta program for brain retraining. I had suspected that it might be neurological or stress related, as docs could not find a reason.

My panic attacks at night also went away, the ones where I would wake up in the middle of the night yelling for help and convinced I was dying.

I have also received more assistance from a sleep clinic and tweaks to my Bipap machine for sleep apnea, which helped with the obstructive and central sleep apnea. But those tweaks happened before I started Gupta, and I noticed a marked change with Gupta.

Two nights ago I started using a different kind of machine for sleep apnea that will breathe for me when I have central sleep apnea.

I am still not getting very much deep sleep, the restorative kind, but I think the Gupta program is starting to help my nervous system calm down at night.

Martha

 

[BeADocToGoTo1]

Have you tried sleeping with a ~10 inch elevation just at the head? You can just stack a few books or wood block under the two legs by the head of the bed so that your body is still straight, but at an elevation. Ever been checked for silent reflux (i.e. without the classic heart burn pain) or hiatal hernia?

 

[Gar Dee]

Those 1-second spasms in my lower center chest that woke me up over and over on the edge of sleep went away within a few days of starting the Gupta program for brain retraining. I had suspected that it might be neurological or stress related, as docs could not find a reason.

My panic attacks at night also went away, the ones where I would wake up in the middle of the night yelling for help and convinced I was dying.

I have also received more assistance from a sleep clinic and tweaks to my Bipap machine for sleep apnea, which helped with the obstructive and central sleep apnea. But those tweaks happened before I started Gupta, and I noticed a marked change with Gupta.

Two nights ago I started using a different kind of machine for sleep apnea that will breathe for me when I have central sleep apnea.

I am still not getting very much deep sleep, the restorative kind, but I think the Gupta program is starting to help my nervous system calm down at night.

Martha - I'm glad to hear you seem to be making such big strides in getting things under control, and so quickly too! It's always uplifting to hear other's stories when things are improving and solutions found. I hope you start to get some decent quality sleep soon, and that things continue to move in a positive direction for you!

 

[MarthaStett]

Have you tried sleeping with a ~10 inch elevation just at the head? You can just stack a few books or wood block under the two legs by the head of the bed so that your body is still straight, but at an elevation. Ever been checked for silent reflux (i.e. without the classic heart burn pain) or hiatal hernia?

Thank you, yes, I did rule out reflux and a hernia. But I do sleep with a wedge pillow to elevate my head and torso anyway.