I feel like I am dying in my sleep..
 

Not sure what this is, and it's happened since I was diagnosed, so I can't help but think this is related to my MS.

It's like when I go to sleep my body doesn't know how to work everything while I am not conscience.

I wake up abruptly, very short of breath, inside's are in a huge panic, and my pupils will be so messed up, like one pupil super small and the other is huge.

My neuro said they're panic attacks, but I firmly believe that is not the case.
I wake up like this, and after about 2 minutes of being awake my insides go right back to how they were before.

The feeling is awful, my inside's truly feel like I am dying.

Have any of you experienced this?

I hate doing it, I feel like the scare of it is taking years off of my life, and some nights it happens 4-5 times in one night...

I don't have that sx but your post did make me want to reply.

So your neuro thinks it can be panic attacks? Now what? You are still having a huge scare, that is very real. What did he recommend you do for the panic attacks? Did he blow you off with his comments?

If the answer is yes, you have to be a better advocate for yourself. Do you bring anyone in with you when you have a consultation? That may help, especially if you believe the neuro is not being as thorough as he/she should be. Two concerned people can work their magic on the situation. Plus your "other" might perceive what is happening differently, interpret whether you are being blown off or not understanding what is being said.

It should not be adversarial. You are both on the SAME side and he gets paid a lot of money!:) I would pursue the panic attack with my PCP, no doubt. Let the PCP have a crack at it and see what is said.

If panic attack is ruled out then go back to the neuro.

Whatever you do, never let the doctor stand with one hand ready to walk out the door.

One of my favorite ways to pleasantly manipulate the situation is saying, "Ok, you think it is such-n-such. We need to work together to come up with a solution. I am open for suggestions."

smile, relax. He is the expert and you are the body!

Yes, I have and your Doc is right....Panic attacks, at least for me. I thought I was dying too. I never had a panic attack or suffered depression befor MS, so I know darn well, it's caused by MS.

Ask your Doc about Buspar or Paxil, they are both good for panic/anxiety as well as depression. I'm on Prozac now, but if you are having Panic Attacks, you don't want Prozac yet as it has a bit of an upper effect.

:hug:

since getting my own panic attacks under control I rarely have such issues.

Have you had a sleep study? I know a couple of people who have had very similar issues, and they both had undiagnosed sleep apnea.

Just wondering...what was your neuro's explanation for your pupils being different sizes? Did someone notice that symptom, or did you observe it yourself?

panic attacks?

I do that sometimes (not the panic attacks) but wake up abruptly. Usually coughing and trying to breathe. I dont have asthma, but I wonder if there's something going on with my ability to swallow correctly and maybe I'm choking in my sleep.

Sleep study was my immediate thought also

I wake choking because my tummy back washes up into my throat. its all part of my frozen stomach thing. My tummy cant seem to push the food down, so when my tummy relaxes it pushes it back up! I find myself choking now and again after a big meal. scares me!

Thanks for the responses everyone!

I'm not going to lie, I am rather a crappy advocate when it comes to my health and the doctors, and the reason for that is because I feel really bad for not having health insurance, so when I see my neuro (and yes he does always have his arm halfway out the door ready to go) I mention the big things that are bothering me and let him do the talking. I just feel bad because I don't have money to pay for the service so I guess I feel that I need to take what I can get and never ask for anything. I do feel blown off by him alot of the time but maybe that's just me.

He gave me lorazpam <--I think thats what was, and I have taken them. I can't say they really help, I take one, go back to sleep, sometimes stay asleep, sometimes I wake up with the same thing. My boyfriend said he noticed when I do this craziness, that its about 30 minutes into sleep. He thinks it's sleep apnea. My grandparents have it and they say they've never woke up in a panic from it before..

I've thought about doing a sleep study. I just have no clue where I need to go to do so.

My neuro had no explanation as to why my pupils were so different, just a puzzled look on his face. I noticed my pupils were different, when this happens I can feel the difference in my eyes and my vision is .. odd?

does anyone know how to direct me to a sleep study?
and if I were to be put on depression medicine that might fight against them?
also, why would I only panic while I am asleep?

thanks again everyone!!! :grouphug:

I have sleep apnea, and what you described is what I experienced. I had a sleep study; abnormal sleep apnea is 5 or more incidences during the night, according to my neuro, who is also a sleep specialsit. I had 98:eek:
I now use a CPAP machine, and even though I still have periodic limb movements, I don't awaken the way you describe any longer. I get better sleep, too.

Yes, please dp see about getting a sleep study, in case of possible Sleep Apnea. My 36 yr old nephew had it.:(

I have sleep apnea and if I do not use my cpap I will wake up with a jolt/slight gasp. My primary care physician referred me to a pulmonary specialist who then ordered the sleep study.

this sounds familiar. I used to wake up about 30 minutes after going to sleep with a violent pain in my mid abdomen (probably lower than esophagus). I would have a terrifying vision with it, and think I was dying. Once I thought I had already died, and told my husband I had died--but then I came fully into consciousness. Sometimes this was so shocking that it threw me out of bed, and on extreme occasions I would find myself across the room, where I had crawled after being thrown out of bed.

This was worst before diagnosis of MS (I have a coupla other dx's now too). Getting on the Swank diet helped at least partially, but I can't remember when this mostly went away...gradually. It was gone a long time, but now it is back, ironically, in a form which
I think could be Sleep Apnea. Today I awakened from a nap needing to breathe. I think I am stopping breathing more than in the past, although I don't know if I stopped breathing when I had the very painful episodes while younger. Just as with you, my
painful episodes described did not happen while awake.

Another thing which may have helped was taking Magnesium. Taking magnesium, which was not prescribed until after MS dx, stopped my jerking leg and back movements which occurred while drifting off to sleep, and possibly it also cut down on the waking in pain. The waking in pain could have been a stomach or intestine spasm. I have lots of
spasms, and they could be either from MS or from Porphyria. Stopping spasm seems to be the biggie for me. As I could not take Zanaflex or Baclofen without severe side effects, due to as yet undiagnosed Porphyria, the wise neurologist prescribed Magnesium. I must take at least 900 mg a day, and sometimes 1000 and on a rare occasion jerking will not stop until I am at 1100. This made a huge difference to sleep.

I wonder if the new more typical Sleep Apnea is due to the fact I'm starting Interferon?
I have been on it about two weeks at low but increasing doses, for Polycythemia Vera,
to cut back on high platelets in my blood, caused by my bone marrow, by a mutation which showed up six or seven years ago for "reasons unknown". It's rare, like Porphyria, so I have two rare blood diseases.

When I awakened today taking a deep breath, I realized, as I have a lot lately, that I will
probably be going to meet my Maker soon, and as I a nearly 80 that is not so bad.

I never have the waking with pain any more unless I eat something bad. For me something bad is usually something greasy, as the Swank low fat diet is important for
both my MS and my digestion. Sometimes this comes from eating something hard to
digest, like a turkey weiner which is too "hard" and does not soften up by cooking.

It could be that your problem is a huge spasm caused by indigestion. Something to think about--may seem a simple thing, but it could happen, especially if you, like most of us, tend to spasm.

I find Klonopin works better for me than Lorazapam--is that Valium? In fact I get spasms from Valium.

I believe that your PCP has to refer you for a sleep study. At least that's the way it works here. Your PCP should be aware of these symptoms anyway, whether or not he/she refers you.

Sleep study was useless for me, years ago. Just showed what I already knew, that I had
leg and low back jerking while asleep or drifting off. But if you are trying to prove Sleep Apnea, sounds like a good idea.

Thank you for the replies everyone!!!!!:grouphug:

Mariel- You bring up a few things I didn't realize..
Before I was diagnosed I forgot all about doing this..
When I would start drifting asleep my body (mainly back and legs) would violently jerk. That would of course wake me but at the time I never even knew I had a disease so I didn't know what was really happening.

This has thrown me out of bed multiple times. There has also been times that I abruptly wake up like this and finally come to my senses and wake all the way up and all realize I am in the living room or bathroom or somewhere else other than my room.

I am definitely interested in getting this sleep study but I don't do it every night.

Some nights I do it once, some nights I do it 4-5, other nights I sleep just fine. So I would hate to get into a sleep study and do nothing then these people will just think I am a hypochondriac.. :(

I hope my story helps others
 

These had been my symptoms for more than 15 years before finding the cure: I would wake up in the middle of the night trying to “restart” my body and come back to life… feeling numb like my body stopped and almost died but for some reason my brain decided to use the last drop of energy to wake me up. Another thing was heart palpitations that would last a few days, from time to time but I guess that was minor compared to the first issue.
Doctors gave me no answers… I have very little trust in conventional medicine at this point.
I was feeling alone and scared. I started to educate myself in nutrition and healthy living in general. The first step was to avoid chemicals, buy organic whole foods and avoid restaurants and processed premade food in general. I would be more careful with cleaning products, VOC from paint, furniture etc, cell phone and wireless routers, electromagnetic radiation, x-rays and other ionizing radiation, etc. I even found a source of well water (no fluoride). I was also exercising and taking good quality supplements like minerals, vitamins, super foods, etc. I WAS DESPERATELY FIGHTING FOR MY LIFE with whatever tools I had.
Stress, poor quality food, lack of sleep, etc would accentuate the problem but they were NOT the main cause. After many years of making good changes about my nutrition and lifestyle (which I still follow) THE PROBLEM WAS STILL THERE! And please do not blame it on anxiety! Anxiety and panic attacks can be serious mental health problems but if your case is similar to mine, chances are it is PHYSICAL and fear is a normal consequence and may be an aggravating factor, not the main cause.
Electrolyte imbalance had always felt closest to the truth; however, I was being careful with my calcium/ magnesium/ sodium/ potassium intake. The situation had become frustrating to say the least. Something else was missing
I continued searching in the area of natural holistic medicine and one day I came across the subject of salt. At that moment, all I knew is that salt makes me bloated and it felt somehow like a poison to my body. After some research, I learned about the difference between table refined salt (including sea salt) and natural unrefined salt. I read about Himalayan salt and how it has over 80 trace minerals in it and why we need those!!!!! Apparently the soil is depleted of these (and many other) nutrients and organic or raw doesn’t help much in this area. On the other hand, seas/ oceans gather them; however, they are also full of pollutants. The answer appeared to be ancient salt (formed after an ancient sea dried up) that has all the trace elements without the pollutants. 2 types of salt sounded good to me: Himalayan salt (it has to be original, I forgot the brand or from mercola.com which is also original) and Redmond Real Salt. The last one has less trace minerals, I thing 60 instead of 80 for Himalayan.
I bought both and threw away my table sat (sea salt). I used Himalayan salt first. I HAVE BEEN FREE OF ANY SYMPTOMS SINCE THE FIRST DAY I USED IT. I don’t even use much, maybe ½ tsp in all my food. I was so excited about this, I bought this trace minerals supplement from Whole Foods that has ionic trace minerals. Now I alternate between Redmond Real salt and Himalayan and also use the supplement from time to time. Please try this, it is inexpensive and it works!! I couldn’t even sleep on my left side, now I am a normal person again, it’s hard to describe how happy I am after all this suffering

hi, I realize this an old thread, but I had something to add.

First, Ayana Dee, I hope by nowe, you have gotten answers to those night episodes.
The only thing I wanted to add: Yes, we have to be our own advocates. Sometimes, we forget to bring some one with us to doctors appt. I know, my husband does not really want to sit in, I think he feels in the way. And I am capable of speaking for my self, but sometimes I might forget. Always have it written on a paper what you want to talk to the doctor about.

But the real dilemma is, THE DOCTORS They just say something to get you out of the office I think. But now, I have made myself a rule to fallow: When you are in there with the doctor in consultation, ( and it is most likely a specialist, and if it is the first visit, they bill your insurance for up toi $ 900 for the consultation, and when it is a fallow up, the bill somewhere around $
So, 300 - 400
So when you are in there, YOU HAVE ALL THE RIGHT TO TAKE CONTROL OF THE TIME He is being paid well
So make your plan, ask the questions,
Do not let the doctor manipulate you to beleave any thing he says. If he gives you a diagnosis, ask for back up explanation, and web site to look it up.

I had something very similar to you Ayana Dee happen to me.

I tell you, it was so scary.

I woke up around 1 am or 3 am, with a feeling I could not breath, my mouth was all foamy white sputum, My body felt heavy and I had a deep warmth feeling from one area of body moving or spreading slowly all over my body, And I could feel a rush like fast vibration inside, even though I felt my pulse, and it was normal.
I went to the Mayo Clinic in Jacksonville, Florida due to multiple neurological problems, and I could get no answers from any neurologist.

So, This neurologist at the Mayo Clinic, said " it sounds like a panic attack"

So I said to her, I have never had panic attacks, I have never been seen by a psychiatrist or had anyone diagnose me with any kind of psychiatric disorder"
So, this thing with panic attack, how can any one that are sleeping , just wake up and have a panic attack??
I had driven 6 hour to come to this well known clinic hoping to get some help. I later wrote a letter to the clinic and to the doctor to have that stuff taken out of my medical records, and they did.
I do not beleave all the doctors. I have to have solid proof, and I must have good confidence in my doctor.
Now, I have persued this with my neurologist down here. I have 2 neurologists. They both think this might bee simple partial seizure.

So now, I am going next week to be admitted for 3 days and have a video sleep study and EEG monitoring.

Hope all is well with you all

hopefully with the affordable care act you will be able to sign up for an insurance plan.

i agree about the sleep study. i had sx's too. i would start to fall asleep and then jerk awake feeling short of breath. i did have sleep apnea and use the machine. i don't need oxygen, just the pressure. the cpap helps my heart and has lowered my BP.

i wonder if an eye dr can see anything in your eyes. how long does the pupil disparity last? again, an insurance thing.

let us know how you make out. if you do get insurance, i'd look for another neuro.

Thank you for the responses!

Usually about 10 minutes.. I've noticed they don't quite move around like they're supposed to when this happens as well.



I have, since, had 2 sleep studies. Of course, these episodes didn't happen during so. We have completely ruled out sleep apnea (even though I knew that was not the problem) and the last neuro I saw (who was super awesome, but resigned to go back to his country after my first appt.) believed I was having seizures.

My most recent MRI showed many lesions both in the spinal cord and brain and a few lesions in the brain stem. My opthamologist believes I am having issues with my Autonomic Response System.

I just recently was approved for medicaid. Going to try to get in with a new PCP so I can be referred to a neuro.

I still have these terrifying episodes in my sleep.. Haven't had one in a couple months, thank goodness!

I would really like to know what the episodes are.. They're frightening beyond all belief.

So glad to hear that Medicaid has accepted you.:) I hope you can
receive the care and meds you need, now.:hug:

I used to wake up like that with very severe abdominal cramp. I believe it is a form of spasticity affecting the muscles there. I wrote a long post about this a year or so ago, but I just wanted to reiterate it in a brief form. I don't have this problem any more. Maybe I get enough minerals now, although I haven't used the Himalayan salt. I will try it. My nighttime horror now is my legs and back jerking, and itching all over. The itching is not from MS--it is from Polycythemia Vera, a common symptom and chief complaint. I use ginger tea if I have to get up with the itch, and that helps. I must get enough magnesium and calcium during the day to stop the leg and back jerks, which is usually successful. I have no way to really get a handle on the itch, although ginger helps. Obviously skin balm helps but does not stop it. I am always grateful when I have a night a sleep through, maybe a third of the time.

Thanks Sally! :hug: I am very excited and nervous all at the same time. Happy about being able to be seen by actual health care professionals, but am terrified of it being an experience like the very last quack doctor I saw. I am hoping so much that I find someone like Dr. Omar.

Mariel- I read the older post. I don't have pain in my abdomen in these episodes.. It's a really crazy feeling in my head and a horrible rushing sensation throughout my body. My breathing seems to be off rhythm or short.. My eyes feel weird when they move and 1pupil will be tiny and the other completely dilated. It's bizarre and scary as all get out. I have noticed a couple of times before these episodes, that I will wake myself up laughing. Other times my boyfriend tells me the next day that I was laughing all night in my sleep.

Lately I have been having to make sure my head is fully elevated while sleeping or else I wake up with horrible vertigo and sit up immediately but am not fully able to get my eyes all the way open or get the spins to stop for a minute. That's very scary as well. The base of the inside of my head doesn't feel right, I am assuming that's inflammation.

I may try magnesium tho, as thats not really incorporated into my vitamins :hug:

AynaDee, it can't hurt to get some extra magnesium, as it is a needed element which is often low in many people. A pcp told me that the majority of Americans now test low in magnesium. He didn't know why this was, other than possible nutrient deficiency in our food.
I know you didn't have the abdominal spasm, just noted it in my case as an example of how spasticity could cause night-time severe reactions. I had a weakness in that area due to having Porphyria; it is almost completely gone now.
I hope your night condition goes away too!

I have had your exact symptom of waking up gasping for air, and the rest of my body is freaking out, too.

I was diagnosed with MS-related central sleep apnea. The more common sleep apnea, obstructive sleep apnea, is when you stop breathing because of an obstruction in your airway. Central sleep apnea is the result of having your brain fail to signal your body to breathe, and in MS it is because of damage to the portion of your brain that controls that sort of thing.

As a result I am now on O2 at night. It hasn't happened to me since I started the O2.

Thank you so much for this post.. It's definitely something I am going to write down to ask my new doctor (when I find one).

When these happen and I try to explain it to my boyfriend when I come out of these spells, that's much like what I tell him.. 'it's like my body is forgetting to breathe and am on the verge of falling out my brain wakes me up like "HEY YOU"RE GONNA DIE_WAKE UP!" and then all heck breaks loose'

This all makes sense..

And also backs my theory on me knowing my body better than most doctors :rolleyes:

Thanks again! :grouphug:

AynaDee, My nighttime wakeup emergencies were very much like yours, except that my trigger to wake up was the sharp pain in the middle of the abdomen. Actually the pain was in the area of the diaphragm, where we breathe. I think my events were also triggered by something in the Central Nervous System failing to signal me to breathe, so that then I had this acute pain which MADE me wake up.
During the more severe of these episodes I would say to my husband, before I was fully awake, "I have died." or "I am dead." I didn't say "I'm dying". I WAS dead, in the opinion of my body. sometimes this would be so extreme that I would throw myself out of the bed and somehow end up against the wall a few feet away.
The Central Nervous system being damaged is a problem! I don't have this type of pain signaling any more at night. Maybe because older people sleep lighter than younger ones. Maybe I do not go into that very deep sleep now.