I don't know how else to describe this. After an extrememly tiring 2 days, and at complete exhaustion, finally got to bed and just wanted to sleep.
Felt myself drifting off, then waking not breathing or being able to swallow. As if my body forgot how. Doesn't make sense I know. Not "air hunger", I have experienced that and this is different. Could not move my tongue, as if it was frozen and blocking my air way. Yes, very bizarre. Thought I had experienced it all by now.
After all these years, my body is still finding new symptoms to torment me.
Posted by Starfall1969 (Member # 17353) on :
Sounds a bit like sleep paralysis.
I get that a lot, I don't know how to define it, but it has something to do with your body's sleep cycle or something like that.
I think it's like your body is in between sleeping and waking, and your brain has your body in the sleep state evven though your mind is awake.
Posted by njlymemom (Member # 15088) on :
this would fit with other things happening now
thank you
Posted by Leelee (Member # 19112) on :
I have forgotten how to swallow a few times too. It is really frightening! This usually happens when I am lying down.
I've had other weird things happen with my throat muscles too. Before I crashed played the flute. There were a couple of weeks before my big Lyme downfall when I couldn't remember how to blow into the instrument. My throat would seize up and I couldn't make a sound.
Posted by painted turtle (Member # 7801) on :
I have had the forgetting to breathe symptom in the past. Like my brain was forgetting to breathe then I'd remember and do an in breath. I believe my LLNP at the time said it was my hypothalamus gland, if I am remembering correctly.
Did not have forgetting to swallow in a conscious way, but did choke on my food and choke on swallowing/saliva sometimes.
Posted by mtree (Member # 14305) on :
this is awful.... I just can't even believe what we all go through....
I do wake sometimes in the middle of the night....heart racing...feeling like the wind was knocked out of me...and shaky all over...
Dh says it's probably a nightmare.... ..I remember nightmares....this is not the same...
mtree
Posted by kam (Member # 3410) on :
It is scary. I recall going through this too towards the beginning.
I sure hope it does not come back and I hope it goes away quickly for you.
I think it might have been from over doing it and exhaustion.
Posted by feelfit (Member # 12770) on :
Njlymemom,
I have been experiencing this exact same thing, minus the frozen tongue.
It happens when I am just about to drift off to sleep and suddenly I am jolted by the fact that I cannot breathe. When my mind becomes alert, the breathing begins again. However, this happens for hours into the night, I am drifting off and no breathing, become alert, breathing begins. It usually settles between 3-5 am.
I have had my heart pause during this as well, but not all of the time.
It is not sleep apnea, but something totally different. The respritory therapist doing my CPAP fitting had never heard of this in her 10 years of work.
I don't know what it is, seems like it would come from the autonomic nervous system though. Last night I was wearing my CPAP for the first time and it still happened while I was drifting.
Go figure. It is scary and makes me think of ventilators...don't want to go there.
If you find the reason, please let me know.
Feelfit
Posted by nenet (Member # 13174) on :
These have been long-standing symptoms for me too. But I get them during the day too. Not as much anymore, because treatment is helping.
In my opinion it is likely ties to the autonomic nervous system and cranial nerve distrubance, both from damage caused by Lyme. Lyme can wreak all sorts of havoc on the nervous system.
Posted by ESG (Member # 4816) on :
I get choking on my own saliva and on food: mis-swallowing, I would call it. It is neurological symptom.
And that pause in breathing is a symptom too: almost like you have to tell yourself to take a breath.
I also get what I call breath hiccups: a pause in breathing followed by a little jerky breath. That happens in bed, always in the early morning hours, when I seem to be half-alseep & half-awake.
Yes, it gets better with ABX treatment - slowly. Comes back when I try stopping ABX.
ESG
Posted by ESG (Member # 4816) on :
and yes, sometimes I have to stop and think, talk to my tongue about how to swallow!
Posted by sutherngrl (Member # 16270) on :
I am constantly choking. Not neccessarily at night, but anytime. It happens almost everyday, but some days are worse than others. Feels like my throat is closing up. I also get the forget how to swallow thing but it doesn't bother me as much as choking.
I have been in treatment for 14 months. For me I had choking in the beginning of my illness 3 years ago, it got better and just came back the last 6 months.
Posted by njlymemom (Member # 15088) on :
feelfit, 2 drs (cardiologist and neuro) i have seen in the last 8 mos both want me tested for sleep apnea. were you tested? Sorry, i dont know what CPAP is. i am so afraid of hospitals, spending an overnight for this test to me is scary
i am so sorry for all of you who are going through this too
have had the swallowing issues for about 15 years. has improved with abx tx
never had this happen to my tongue - could not move it at all
starfall mentioned paralysis, and that sums it up
had a barium swallow test many years ago when they thought it was all MS
even then my esophagus was not working right
small bites or i will choke
it did not happen again last night
i was overdoing it this week
some things had to get done and now paying for it
yes, feelfit, ventilators what a frightening thought.
Posted by LittleLymie19 (Member # 15610) on :
I just wanted to pull this post back up again because this morning I woke up and had the "forgetting to breathe" issue. I've had it for hours now, all morning.
Does anyone get this during the day? I'm sitting here forcing myself to breathe, and if I don't, I realize I'm not breathing and feel like I have to gasp for air.
This is awful! I am finding it hard to coordinate breathing and talking as well. Has anyone experienced that?
Thanks everyone. I hope you all are well and breathing today!
Posted by LymedOut (Member # 22351) on :
feelfit,
I have the same exact symptoms as you and it does get very scary. I wore a sleep monitor at home and the nurse told me I probably had sleep apnea. I stopped breathing a few times. I feel like it's more my brain forgetting to tell me to breathe. I sometimes jump up out of bed feeling like I am dying. My heart is sometimes racing and I feel like my body is catching back up on functioning and breathing. It's really weird. This happens to me at least 6 or more times a night and then I finally get to sleep. I've read that people with Lyme have an issue getting to a deep sleep.
Posted by feelfit (Member # 12770) on :
Hey Guys,
A very sick Feelfit here. I am bad, bad, bad. In bed the last 3 days with horrific HA and the breathing/swallowing.
LL. Yes, I get the breathing during the day too. Then I think that I might be hyperventilating because when you are 'telling' yourself to breathe, the rythum is all off and breathing becomes audible gasps. I have also run out of breath when trying to speak. MId-sentence and there isn't any air left.
My doctor looked at my uvula the last time that I was there and he said that it deviated to the left and that that was a sign of crainial nerve involvement.
All of this is a result of malfunctioning nervous system. Inflamed nerves caused by the disease.
Lymedout, You are probably right as to the brain/breathe connection and not a true apnea. It happens just as you are drifting off right?
Njlymemom, sorry, I did not see your last post. But a CPAP is for sleep apnea. It is a positive airway pressure machine. It doesn't do a bit of good for the breathing stoppage that happens while awake! How are you doing with the breathing/swallowing now?
Posted by LymedOut (Member # 22351) on :
feelfit,
Yes, it happens 6 or more times right when I'm drifting off to sleep. It's scary and sometimes I wake up feeling like I'm going to pass out.
Sorry your feeling so bad. I hope it gets better for you.
Posted by njlymemom (Member # 15088) on :
hi feelfit - i never went for the sleep apnea test - had a severe attack in early Aug.
i know that sleep apnea is not it - b/c it happens when i am awake. when it gets really back i am gasping for air and can't swallow.
it takes me a few minutes then i get back to "normal". in the meantime have develped what they are calling myoclonus and on anticonvulsive med for that - helping a little - it is not going away - neuro was sure it would
did a few searches and lyme can cause this - doctors are blaming it on the meds - i think they are wrong - i am right - b/c it gets worse when my head/neck is swollen, when pain is worse and numbness is worse - it is all connected - i know it and so far can't prove it
you are right - don't think the CPAP would do a darn thing for me - i am not going to spend the money on the sleep study - don't think it will give me any data that will help with my tx in any way - not made of $$$$
I have been in bed with the head pain recently too. Can't make it to the pt, only driving wi/in a few miles of my home. Used a few detox methods, and is helping with the pain.
Hope all of you find releif soon.
Posted by lpkayak (Member # 5230) on :
i've had lyme since 84
i've had these sx on and off for a long time
it got much worse after a 4 hr surgery when i had general anesthesia-but i had it before
i often gag brushing my teeth-i mean long term gag to coughing fit
i have had all kind of testing for it with no answer...but i believe it is related to lyme in cranial nerves
those of you where sleep and breathing are involved -i would encourage you to rule out sleep apnea if possible. i know how tx for that can really help
getting good sleep can not only give you more energy and clearer thinking...it helps immune sys and so can help you get better from lyme etc
Posted by Starfall1969 (Member # 17353) on :
Yes, I get this too.
It's gotten really bad since I switched to Amoxyl.
It usually happens when I'm drifting off to sleep. I start feeling like I'm smothering. Once I'm fully awake, it lets up.
Sometimes it's an hour before things settle down and I can get to sleep.
Once I get to sleep, I'm fine.
Posted by feelfit (Member # 12770) on :
yup.....strange!
Posted by LymedOut (Member # 22351) on :
Does anyone feel, while their waking up, that something is wrong? Like you're dying? Sometimes, I jump up and walk around because it feels like I'm dying. Once I'm completely awake, those feelings subside.
![[shake]](graemlins/shake.gif)
..I remember nightmares....this is not the same...![[Roll Eyes]](rolleyes.gif)
mtree