Afraid to Sleep!!

[drgnlny]

So here it is a little after 5am and I'm still awake. Not because I'm not tired...but because I'm afraid to sleep.

Last night I woke up at 2:30am very disoriented and confused...feeling this weird, morbid sensation and physically weird...and recognized it as the same feeling I had several weeks back while at the coast - where I ended up in ER.

I knew this was most likely a panic/anxiety attack coming on. But I still don't really know for sure. This would make the 4th time I've had this physical experience.

The first was the worst as in the longest in durration - but it was also triggered by accidentally taking too much Benedryl (something I had been taking to help me sleep but that would often have the opposite effect and keep me wired; and I've since stopped taking at all!). That first experience seemed to be a combo of too much Benedryl and a possible reaction with my pain meds. It started about 20 mins after I took the benedryl and lasted literally all night long, then escalated in the morning to the point where I called 911.

I experienced a very awful hot, tingling sensation throughout my body, severe heart palpatations - where it was pounding so fast and so hard I could feel it in my throat, couldn't breath, felt light headed, etc. I thought I was having a stroke or heart attack but was too scared to go to the hospital at the same time. So I spent all night long awake, going through these waves like every 20 mins or so...I would keep waking my bf up and he'd place his hand on my chest and hold me tight to try and relax me. It would help for a bit, I'd start to relax and it would ease up a little...then start up all over again! I kept doing breathing excercises, sipping water and finally at one point - got up and paced in the kitchen for awhile - stupidly thinking if I could stand up and walk, I couldn't die! The things we think in times of crises!

By morning, it seemed to be finally being fading away...but when my bf left for work and I was alone, suddenly it all started up again and got 10x worse. This time, I was shaking all over, to the point where I could barely hold the phone in my hand, kept dropping it and couldn't dial, could feel things escalating to the point I thought I'd fall unconscious so I hit 911.

The end result after being seen in ER and tested - a drug interaction along with panic/anxiety attack.

I didn't like it, but it made sense. And I felt like I 'knew' what triggered it.

But the second time I felt something similar was just a few weeks ago while at the coast visiting my bf's parents. I woke up a little before 3am, very disoriented, confused, kind of morbid and felt really 'weird' physically. Had strong urge to have bowel movement and within about a minute of waking...my heart started racing, then pounding, felt this hot, tingling sensation from head to toe, couldn't breath...the urge to have bm intensified like mad, so I went to the bathroom - after waking my bf up to come with me!! And while on the toilet, it seemed to ease up but then I realized I had major impacted stool issue - the urge was intense to go but it couldn't be passed so that was causing some add'l issues. But started to relax a little because at least the other sx's were fading away.

But then it all started up again...the heart palps started but this time got really bad, my throat started burning, and the more my heart raced/pounded suddenly this intense burning started in my head and back!!! I thought I was going to pass out and was absolutely terrified!! We ended up driving to an ER that was 1.5miles from where we were...all the while, I kept having waves of it all. However, by the time we got to ER, it was easing up again. Although my bp and heart rate was really high and they were concerned, by the time they had me hooked to EKG and monitored...the major heart palps, etc. had finally stopped.

Good that they stopped...bad that they missed catching them on the monitors and EKG.

All I could do was explain to the doctor what happened, how it felt, etc. He had a few possible causes but couldn't say anything for sure since they didn't catch any of it and it had now stopped. Then they handled the impacted stool issue...which I asked if it could be triggered by or related to and he said it's possible but still couldn't say.

Since returning from the coast...I've had that happen two times. Both times it happened while I was sleeping! The last time, I was able to recognize it and so I took a Xanax (something the ER doctor advised to do if it happened again), sat up, sipped water, did breathing excercises and my bf was home working, so I talked to him while it was happening..stood up again feeling 'safer' if I could stand...

That time, I was able to keep the heart palps to a minimum and then it shifted to these intense muscle contractions and shivering. My entire torso, buttocks, and legs would just contract intensly, to the point of major burning, I would shiver and shake like crazy and then it would ease up for a few mins, then it would start in again...this cycle took place for about 20 mins until it seems maybe the Xanax kicked in and helped to physically relax what was happening.


And then it happened again last night...I woke up at 2:30a...again confused, disoriented and feeling very morbid...felt very weird physically and then quickly realized what was going on...could feel that weird hot tingle sensation start in...and again, an intense urge to have bm.

I took a Xanax, drank water, sat up in bed, started breathing excercises and turned the TV on to help calm and destract me. Woke my bf up to let him know what was going on and that I was heading the bathroom...I was scared I might pass out in there or something might happen. Anyway - thankfully, I was again able to keep it to a minimum. The throat burning started and the heart palps started but didn't get too bad...though it took a lot of effort! And again, it lasted about 20ish minutes..until the Xanax kicked in and started to relax me physically.

So at first I didn't think about it tonight...then I realized I was doing things to avoid going to bed. And then I finally realized I was scared to go to sleep. I didn't feel 'safe'. I was scared it would happen again. I think because it happens out of nowhere and while I"m sleeping - it's very unnerving and I feel like I have no way of preventing it. I mean it's not happening while I'm awake or consciously upset or stressed...it's happening while I"m sound asleep!!

Waking up feeling like that - the morbid feelings, the confusion, disorientedness and then suddenly having the physical things kick in - and they ARE SCARY FEELING! It literally feels like I'm having a heat attack or stroke or something...except there's no real pain...except for the immense burning that one time in my head and back...that was weird. The rest of it is just extremely scary because it feels like something horrible is happening but I don't know 'what'. And having your heart racing and pounding and not being able to breath, having those hot burning sensations in your throat and awful tingling in your body - it's just very wrong!!

when I looked up Panic Attacks online, these are the symptoms I read. So I'm assuming that is what they are. I just don't know why I'm having them when I'm asleep!

Does anyone else have this issue? What do you do???

I hate being afraid to sleep, it's ridiculous! I have enough problems as it is, I don't need this on top of them all. And not sleeping is going to make things worse for me...so I really have to resolve this soon.

I've had a year from hell - I've spent most of it stuck in bed. My life has literally fallen apart because of it; and I'm still in the middle of several ongoing battles w/kaiser, doctors, my employer's disability (had to get an attorney!). So things are still very stressful, I know I'm under immense pressure still.

But on a good note, just recently, like within the past month, I've finally started to see a little improvement in my overall situation healthwise...finally have started to feel well enough to get out of bed each day for a few hours and even do mild activies on most days, in short spurts of course! But still - better than nothing! I can run a quick errand or two. Or I can do a couple things around the house. I can be up and actually spend some time with my family before wearing out and having to go back to bed and sleep again. I still spend more of my day in bed, than not. I just can't afford to go backwards now that I've finally seem to be seeing a bit of light at the end of the tunnel!

It's frustrating because it seems like when something 'good' starts to happen, a new problem arises! I hate MS!!!

[jojo18]

wow.
that sucks.

i do not have those problem so i cant help you there.

but my advice would be to think back to see if you can remember anything that might be a common trigger.

i would also (to prepare if it happens again) to keep a journal, basic one, on what you ate, did, felt that day.

if it does happen again, i would call 911 ASAP so that an EKG can be done before its over

[SNOOPY]

Hello drgnlny,

It's not uncommon to have panic attacks when you are asleep and yes, what you are describing does sound like a panic attack.

Many people each year end up in the ER for what they believe is a heart attack or stroke but is really a panic attack.

You might think about taking the Xanax before you go to bed and see if that helps.

[babygirl_vic]

I agree with Snoppy....I have had anxiety problems long before the MS diagnosis. I take a Xanax before bed, I have awakened having some of the same symptoms. And I know it's NO fun! It is a very scary feeling, but you can't be scared to sleep, because then you're just going to have bigger problems. Hope you feel better soon!!

[dontstopbelieving]

Hi! im sorry this is all happening to you i know its overwhelming i had a similar experience recently.

I am 19 and in college and i was diagnosed this past august, i was rushed into meds and dealing with my diagnosis with a month to prepare for heading back to college, i made the decision not to tell anyone about my diagnosis even my teachers because i am a very private person so secretely i have been fighting this fight on my own. I was doing great until i went home for spring break and i had a mri and a check up apointment with my neuro, i was expecting everyhting to be good but she told me that one of my lesions had grown.
i feel like maybe it was my first time really coming to terms with the illness and realizing that i do have to deal with this, it is real. I became extremely stressed.
I had a few days before going back to school and after my neuro app and the bad news i still tried to stay positive because i have no SX but underneath it all my body was very stressed.
i met up with a friend of mine and we smoked marijuana (a pasttime i have enjoyed for years) and for some reason i had an adverse affect. I had a major panic attack it was just this terrible terrible negative feeling in my body i couldnt describe and these terrible feelings in my chest. i laid down and continued to panic. my mind was going crazy about my family my diagnosis school and my future.
i felt like there was a tightening in my chest all around my chest with this negative feeling i was nauseaus and just overall scared. my heart was racing and i felt shortness of breath like i couldnt get enough air. i went home and ended up waking up my mom to come sleep with me. she talked me through it all night i kept having waves of these panic moments it was literally the worst experience of my life.
then the next day i thought i would be okay because i slept it off but i wasnt i still continued to have waves of panic attacks.
i thought at first it was the ms hug but i called my neuro and she assured me it was just panic attacks.
i went back to school a few days later and felt a panic attack driving to school so bad i had to pull over, the thought of driving or any small bit of stress even if it was something that never stressed me out before through me over the edge and into a panic attack.
i continued hiding my condition all week at school and even having panic attacks in class and sitting through class trying to calm myself down without anyone knowing it was so horrible :[ every night before i fell asleep while i would be thinking i would panic and i would end up falling asleep during my panic attacks.

i called my mom finally during the week and said i needed help. it wasnt going away on its own. i got prescribed a higher dose of anti depressents (ive been on anti depressents since i was a kid) i got upped 50 mg and within a few days it was already helping. now its been 2 weeks and im almost completely back to normal. some things make me panic but im okay for the most part and its never as bad as it was during that week.

i hope your okay and im here to talk you can get through this i know its scary! maybe talk to your neuro maybe you need anti depressents you have alot going on in your life and that could be causing stress related panic attacks!! keep in touch and please let me know how your doing!
ill pray for you i know how scary it is!! be strong!

[Day11]

Recent Like Weirdness

Okay, you had a very long post but I think I was able to follow most of it... sorry, just hard to read a lot at once.

I recently had something similar... shortness of breath, HORRID sharp pain in head, disoriented and then weakness from the waist down discovered as I had a strange urge to bm 3xs in one night.

Felt like someone was standing over me cuz I would jump crazy...

Figured out a few different things... The head pain was muscle spasm, the disorientation was vertigo and the bm I don't know... Steroids, Lyrica and Klonapin that was the magic combo. Good luck!

grandma of panic attacks

Hello my first "panic attacks" (i do now at age 64 believe all "attacks" panic or not are related to serious issues) started after I took psychiatric meds such as trazadone; xanax; halcion and other sleeping pills. Until then in my life I never had such a thing. Looking back on it; this was also when I had my first weird vision symptoms that were like ON> but undiagnosed. I also smoked weed so I can relate to the above poster's attack while smoking. P.S. any smoke into system from any substance can cause serious syptoms and and side effects such as she or I have had.

Sooner or later I realized my "attacks" were worse if I slept in a room with window closed and heater on (that decreases oxygen supply).

Just to let you know if you are younger than me; disease of heart and lungs start out slowly and have odd little symptoms at first that usually get worse as times goes on. Smoking and drugs damage the health in a zillion different ways and should always be looked at as a possible culprit.

If you read my limbo land posting of today; you will see that currently heart & lung issues have come up with me. Whether you have MS or not: smoking can do all sorts of things to your health and also cause panic and other attacks.

I will be able to tell you all next weeks if my vision ON horror and other things are related to my heart; vascular system; lungs or diabetes, etc. Hope you all realize that you need NOT TO SMOKE.

[drgnlny]

Thank you for all of the support and sharing your stories and suggestions!

Yes - I tend to write a lot...once I finally write! I think I have so much and I have too many times when I'm unable to be up and writing, so when I can - it just keeps coming out!!! Sorry - I do understand because it's hard for me to read a lot at once, myself!!

And I'm so sorry to hear about the 19yr old having to deal with such a horrible disease so young!!! Although, my Neuro told me he believes the first sx's of MS showed up with me when I was 23 - I didn't have anything that impacted my day to day life the way things started to later on in my early 30s - which led to my dx. You seem to be handling things VERY well for such a young and being so newly dx!! I applaud your strength and you certainly found a wonderful support system here - this site has really made a huge and positive difference in my life!

The hardest part for me is not feeling well enough or mentally sound enough to visit as often as I want/need...nor to read and post as much as I want/need when I can. Gawd - my scattered mind and attention span has become a huge problem for me on top of the physical problems!!! I USE to be very detail oriented...now, I feel like Dori from Finding Nemo!! ha ha

Anyway - health wise, I take as good of care of myself as my situation allows. I don't smoke anything and don't drink alcohol (can't, because of my pain meds). I mostly drink bottled water!! And sometimes, when I feel good enough - I have half a small latte that I'll sip over a couple hours. I take vitamins, drink this healthy juice and a magnesium mix each night. Aside from this past year - which has been the worst in my life - I've actually been very healthy - aside from having MS! It sounds silly but it's true.

I rarely get colds or sick or anything. Before this past year - I was basically perfectly healthy except for the issues MS caused. But things drastically changed and a new and debilitating level of fatigue, weakness and illness took over my life - keeping me stuck in bed for months. I've been on disability since June of 2010 - something I thought would last for only a few weeks...

I've been under immense stress because of it all and my doctors have only create more problems for me...long story there. But no one seems to be able to figure out 'what' was going on or causing my situation to deteriorate so greatly. And the more I pressed for answers, the more I was treated as a 'problem patient'

Because of my health, I'm on disability ...but with a denied claim through my employer's insurance, had to get an attorney to represent me now and am in the middle of THAT battle as well.

It feels as if I'm being punished for having a disease I didn't choose nor do I want!!! MS is punishment enough!!

I could go on - more than I already have!! - at the several other areas of my life that are majorly going to crap because of how sick I've been this past year...it's being kicked when your already down...and I'm fighting in many areas the best I can.

It's very frustrating.

I guess my point is this - I know very well why I am so stressed and where the anxiety is coming from. I have ample reasons to be depressed and upset...and I'm doing my uttmost best to face them all. And to take care of what I can...little by litte, moment by moment.

Having panic attacks in and of itself - doesn't really surprise me and I understand why I could be having them. I just don't understand how come they happen while I'm sleeping!!

I would expect them to occur when I'm awake and consciously thinking about all the crap...or when I'm crying and feeling all the pressure of everything...or when I get a call or open mail or when another issue gets stacked on my plate to fight through...THAT's when I'd expect these panic attacks to hit! But they don't...they do it when I'm at most vulnerable...when I'm sound asleep.

I guess it's that specific piece that upsets me the most. And why there's still a part of me that is concerned there could be something 'physical' going on...not just a panic attack...but that it's mimicing a panic attack.

Anyway - it is what it is...I've tried the Xanax the past two nights so I could at least fall asleep! And I guess I'll just have to see how it goes. If it happens again, I'll have to deal with it. Hopefully, it won't!!

Thank you all again so much for your caring, kind words and show of support!! I know we are all dealing with so much crap living with MS - but are not alone! I hope that we all get to see a world where MS is no longer!!

Hugs to all!

[SNOOPY]

I guess my point is this - I know very well why I am so stressed and where the anxiety is coming from. I have ample reasons to be depressed and upset...and I'm doing my uttmost best to face them all. And to take care of what I can...little by litte, moment by moment.

Having panic attacks in and of itself - doesn't really surprise me and I understand why I could be having them. I just don't understand how come they happen while I'm sleeping!!

It's during sleep that our mind is trying to work through what is going on in our lives. You can have dreams and nightmares, some you may not remember, which could be triggering the panic attacks during sleep.

You have said you do not deal with panic attacks or anxiety during the day. At some point your mind has to find a way to process those things in your life which are creating stress. For you, it seems to be when you are sleeping.

If you like writing you could try journaling, it would allow you to but your fears, concerns, ect. out in the open during the day and might decrease the chance of panic attacks during the night.

You could try working with a Psychotherapist.

Keeping everything bottled up is not helping you and in my unprofessional opinion is the reason you are having panic attacks during sleep.

This has been some of my thoughts on this subject which may or may not be correct in your case.

[drgnlny]

Snoopy - it makes sense what you say, the reason I might be having these at night is because that's the point when my mind is trying to process through it all...and I have my guard down.

You mention writing and I do write quite a bit! I love writing, in fact. Journaling is one of my primary outlets left. This past year, it's been less of an option than I'd like - because of my health, there's been so many days that I can't handle being on my computer or even writing by hand because of health probs. But I DO write as much as possible, and I've been able to do a fair amount recently.

Though it doesn't seem to be helping.

I think the truth of the matter is I'm deeply deeply distressed about my life. I don't mean to sound dramatic but I literally have no area of my life that is not messed up in some way or another right now. So there is no 'safe' place. I've never been in this situation before - I've always had at least one or more areas of my life I could seek refuge in.

But this past year, my health problems officially messed up the last couple areas of my life that were still okay...and I've been in the middle of dealing with it all and trying to resolve what I can for several months now.

Because of the state of my health, I've been unable to address these areas with any sense of consistency or strength as I could before. And even more issues keep piling up. It would take way too much space to explain what it all is...so I'll spare y'all that much!

I can honestly say that MS and the negative impact to my health and ability it's created is the root cause of all of my issues at this point. It either directly created the issue OR the issue was created by the by-product of it!!

This past year in particular, things really took a turn for the worse; sending the last 'good' pieces of my life over the edge. And I've been in a constant state of struggling daily so I can't make any groundway on resolving problems...they either just get worse, or keep getting drawn out or new ones pile on before I can even get rid of the old ones.

The GOOD news...I'm THANKFULLY improving from being stuck in bed 24/7 like I have been for most of this past year....which is what started the downward spiral of my life!! But I'm nowhere near well enough or strong enough to take care of things...especially because of the number of issues going on and the degree to which things have fallen.

I'm still at a point where I'm unable to count on myself from day to day. I don't know whether or not I'll be able to get out of bed and 'do' anything more than use the bathroom and get something to eat and drink! Seriously.

I'm still at that basic of a level on more days than not. On the 'better' days - I'm only able to be up and around for a few hours. And I wear out so fast, so the level of productivity I can actually maintain isn't all that great.

This is good news compared to where I've been...but the problem is that even on my best days - I cannot begin to address all of the things I need to take care of or even make a noticeable dent!! And my good days are still only a handful out of every 2-3 weeks.

I already have as much help as my bf can offer right now - considering he also has a life of his own, issues of his own and a 'full time-plus' job to tend to. And we have full time custody of my daughter, as my ex moved out of state over a year ago.

So our plates are overloaded and with me needing so much add'l help, still being unable to fully care for my own needs on a regular basis, let alone unable to contribute very well to our household, etc. - it's just a very stressful situation for us all.

I literally need a full time assistant to help me healthwise and responsibility wise with my normal day to day things...PLUS the extra's that have cropped up this past year with disability (now from Short term - having to look at LTD), recently getting an atty to handle my employer, plus I'm still struggling with getting proper care through kaiser, my doctors and their maze of red tape & protocols that have hindered my health care and are causing MORE stress than my actual illness!!

I can barely get to the damn bathroom that is 10' from my bed! How am I suppose to take care of all of the above??? But if I don't - I'm even MORE screwed. And THAT's the kind of stress I'm constantly aware of every waking moment...and apparently...every sleeping moment!

Sorry - I did not mean to end up venting all over again! It just does not seem to ever let up.

So, suffice it to say, I feel so buried and overwhelmed it's not funny.

Yet, most of my days my demeanor is very calm...I'm doing my best to handle things as calmly and positively as I can - and besides, I have no energy or strength to kick & scream on most days anyway!

I just can't let myself freak out or break down. I have too many responsibilities to do that...and I know if I just let go, my life WILL get even worse than it already is.

I know what I can't do...but I don't necessarily have the answers as to 'what' to do. I just know how to keep surviving each day so far.

Inside, I just want to scream and run away. I want to be able to say 'F You' to disability, to my employer, to my doctors, to the stupid medications I'm on, to kaiser, to my 'ex' and to all the other things in my life that have me by the throat and that feels like I'm at the utter mercy of!!! Especially MS! (I know I'm not alone on that one!)

But MS isn't going away, and falling off my rocker will only threaten my ability to keep custody of my daughter and it'll cause more problems for the people I love - and myself in the long run. So the only thing I do know is that I HAVE to keep it together!!!

When I look at it like this, it's no wonder I'm having panic attacks at night!! That's when I am not fully in control of keeping all of my stress and fears and what have you 'in check' - this is the crack it's finding it's way out of.

Now I just have to figure out how to be happy and content in the midst of all of this 'sh%t & chaos!!! Maybe if I could channel the Dung Beatle...

Thank you all for your amazing support!!! And for 'listening' to all of my venting!!!

ps - I have been taking 1/2 a xanax each night as some suggested...for now. It seems to be helping for the most part. I had one night where I woke up feeling a bit unnerved but I took another 1/2 tab which nipped it in the bud.