Very Strange Symptoms, Anyone Else Have Them?

[AshleyPooh]

Hi all, I have two symptoms that I want to ask you all about. I have NCS by the way, at least only that as far as I know.

First off, has anyone experienced this?:

Today I was very sleepy so I went to take a nap ( which usually never works out as I get adrenaline rushes from the tiniest noises). Today I was able to fall asleep, and slept about an hour. When my alarm woke me up, I felt AWFUL. It was strange, but it felt like I had just not been breathing hardly at all for a long period of time. My head was really heavy feeling, my chest felt weird and heavy, and I felt basically suffocated. It took 15 minutes of laying in bed just breathing to recover enough to get up.

I've felt something similar to this before, mainly from having my head in the covers or something like that. Does that sound like an oxygen deprivation issue? I can't imagine why it happened. I wonder if like I've heard reported, I was waking up into a fainting episode or something?

Okay, here's another random symptom I wanted to ask about:

Does anyone have trouble with their menstrual cycles? I ask because, for years, I have had what nurses assumed was Endometriosis ( no surgery to verify this). On my first day of my period, I would get cramps that would worsen to the point where suddenly the blood would drain from my face and I'd go completely white, followed by vomiting and disorientation, until I would up on the floor. This would go on for hours until it subsided on its own, or with the help of heating pads and pain medication, usually chased by nausea medication. These episodes were so bad I became terrified of having one in public, as I would be completely unable to help myself. I got on depo provera, and it has stopped my cycles completely, so I don't have these episodes anymore. Do you think that the near fainting episodes I have with those are my NCS being triggered by the pain of the cramps? If so, I've had NCS since I was a teen but didn't know it b/c I only reacted during that situation.

Anyway, just curious

[SarahA33]

Ashley,

Hi there. I'm sorry I am unable to relate to your first set of symptoms. I rarely sleep at night and never cat nap during the day. I often do wonder what wakes me up though. The surges is my best guess. Often I wake up with really bad tachy and palpitations. Sometimes sweating and headaches. have you had a sleep study?

Lastly, I wanted to tell you that I have passed out because of the hyper pots (which is rare to actually "go out") and have pre syncope episodes throughout the day.

Sorry I could not be of more help. - Sarah

Today I was very sleepy so I went to take a nap ( which usually never works out as I get adrenaline rushes from the tiniest noises). Today I was able to fall asleep, and slept about an hour. When my alarm woke me up, I felt AWFUL. It was strange, but it felt like I had just not been breathing hardly at all for a long period of time. My head was really heavy feeling, my chest felt weird and heavy, and I felt basically suffocated. It took 15 minutes of laying in bed just breathing to recover enough to get up.

I've felt something similar to this before, mainly from having my head in the covers or something like that. Does that sound like an oxygen deprivation issue? I can't imagine why it happened. I wonder if like I've heard reported, I was waking up into a fainting episode or something?

. Do you think that the near fainting episodes I have with those are my NCS being triggered by the pain of the cramps? If so, I've had NCS since I was a teen but didn't know it b/c I only reacted during that situation

[AshleyPooh]

Sarah, thanks for replying.

I am considering a sleep study. I have had trouble sleeping a lot like you have for years, constantly waking up, and adrenaline surges when trying to fall asleep.

I have a feeling that yesterday's nap problem was because someone put the a/c to like 75 degrees, and the house heated up (it's not very shady and it's like 90s F here). I think this, along with maybe a heart rate decrease? could have triggered whatever happened. I did not get any real rest today either, felt bad waking up again. I think it's definitely something that if it doesn't resolve, I will need to see a doc about a sleep study.

I had no idea florinef could mess up your cycles! I am not on it but it's good to know for future reference.

I actually got a little faint the other day after ramming my toe into a chair. i got really hot, a bit queasy and stuff. I think pain is definitely a trigger to watch out for now

[Katybug]

I just had an appt with my sleep specialist this morning! On the subject of naps, she said to set an alarm and never to nap more than 40 minutes but preferably only 20-30 minutes. She said if you get past 40 minutes, you are likely to get part way into a REM cycle and then wake up. The REM sleep makes your body start to loose muscle tone amongst other things. Then when you wake y

,you feel worse than prior to napping.

As for menstrual problems, I have had painful periods my whole life. I can't take any oral BC as they all mess with my stomach. I tried nuvaring and that didn't work either. We finally figured out that my body does not like estrogen, so I do DepoProvera shots to keep things under control. There have been many threads on this subject so you may want to do a search to find more info.

[bellgirl]

I'm so glad that some are starting to realize that sleep apnea can go along with dysautonomia!! I have it, and my Cpap has made a world of difference in my life. I'm starting to really live again!! Supposedly, about 30% of us have it from what I have read. I wasn't sleeping for years, with a very poor quality of life. I still have POTS, but it is controlled to a certain extent, and I'm so much better. Sarah, I'm glad your boyfriend is sleeping better, and Ashley that's a very scary experience when you can't breathe!! I completely understand...

I'm in menopause, so I can't relate to the other issue...going through it wasn't pretty, and I did have very heavy periods, though...

[AshleyPooh]

Yeah I'm not sure if the apnea (if that's what it is) is caused by the NCS or anxiety, aka adrenaline rushes, or what.

30 percent is a lot of people to get sleep apnea. my dad had it, but he had heart disease and that is common. my mom has some unknown sleep disorder, basically a 'hyper sleep' where she goes into shut down mode and has to sleep for days at a time. Anything depressant that she takes, such as anxiety meds, antihistamines, stuff like that would drop her into an episode. she avoids all that now, and is supposed to go in for a sleep study.

And yeah, as to the menstrual stuff, that's exactly what's up with me, Katybug. Basically my body hates estrogen, which is uncool since i'm only 26 and a girl kinda needs estrogen for stuff at my age. Depo has been a blessing in terms of keeping me pain/faint free

[Katybug]

Yeah, I haven't wanted kids and don't see that changing now that I'm 38, so depo has been a blessing that works in all ways for me.

Is what your mom has "hypersomnia"? I have that and it's awful! It's not as bad as it was when I first had to stop working. For the first 2-3 months after I stopped working I literally slept 20 hours a day. I couldn't stay up to save my soul. Now I have to nap usually twice a day for a couple of hours. The sleep specialist is trying to work with me to retrain my body. I used to be able to sleep 6-7 hours total a day and be great but not anymore.

[okiedokie123]

Glad you guys could confirm this. 2 years ago when I had insurance, I had a sleep study done and was diagnosed with Upper Airway Resistance Syndrome, pretty much Sleep Apnea from what the doc told me I recall... It is physical narrowing of an airway so not alot of O2 is going through. On X-Ray, they found a stricture on my hypopharynx in 2011 (again, when I had insurance). On a separate matter, I had Allergic Esophagitis one time but that must've been something I drank (Apple Cider Vinegar, I think). So yeah, I'm going to talk to an ENT when I can and see what happens. I might also bring up TMJ that I'm getting and that some potsies reportedly have as well.

I can't really put the patho together with strictures and dysautonomia.

[AshleyPooh]

katybug, we are thinking that it is something like hypersomnia yeah.She started having phases of basically not being able to sleep. she'd go outside and garden or whatever even though she needed sleep. Then she'd go into a 'loopy' phase where she'd get so sleepy that she'd practically be sleeping while on her feet, hallucinating conversations, being stubborn about laying down even though she clearly would fall asleep immediately if she did. Sometimes she'd randomly go make food even though she couldn't stay awake enough to eat it. We found out that her medications were making her worse ( anxiety meds) so she stopped taking them.

Without any depressant meds, she does a lot better. She still needs to nap in the daytime though, and if she doesn't she runs the risk of loopiness.

She was once in the hospital for 3 days because they couldn't keep her awake. All her vitals were normal, brain scans fine. Finally she got better, woke up, and we could take her home. She'd lost 20 lbs b/c she hadn't eaten the whole time. We were terrified until they told us they thought it was a sleep disorder. Now we are going to get that investigated.

okiedokie: I have TMJ as well. I hope to get a sleep study too to rule out sleep apnea, but from what i can tell, my problem seems to stem from anxiety triggering some sort of weird breathing reaction when trying to sleep.

[bellgirl]

I meant that about 30% of us with dysautonomia have sleep apnea, not the general population, but not many talk about it on here for some reason, so I'm beginning to wonder if that percentage is really accurate. To be honest I think all of us with dysautonomia have some sort of hypopnea, shallow breathing or abnormally low respiratory rate, because our brains "forget" to breathe properly, along with doing other things correctly...