Waking up not knowing where I am at, or who I am, or who is around me....

Discussion in 'Fibromyalgia Main Forum' started by happycfs, Jan 17, 2013.

  1. happycfs

    happycfs Member


    I hope everyone is doing as well as can be. I am very concerned because I am having this odd thing happen. Wondering if anyone can relate? Or if anyone has any thoughts or ideas on this? I have had this happen many times now, over the past year or so, but it seems to be worse and worse. I will try to quickly and easily explain...

    I often will fall asleep (usually for a nap, exhausted when this happens) and wake up feeling totally unaware of where I am at, and sometimes even who I am. A panic will flush over me, fearing that I will stay in this 'unaware' state. So there is a distinct awareness that something is wrong, and that I should not be experiencing this. I will fight and struggle to understand where I am at. Yet still, a numbness of my mind has taken over. It happened one time recently that I was so out of it, that I was calling out for my sister in my head (whom I do not live with, and haven't lived with for a couple decades) as I frantically looked around, waking from another exhausted nap. I was insisting in my head that she was my partner in life. Though, I do have a partner now in life, I do not live alone. I could not even think of my partner's name, or even existence at this time.

    I hadn't eaten most of the day, and I had a very stressful week, so I expected to be out cold during this nap. But-- waking up like this in complete terror in the moment. The discombobulated out-of-it state usually lasts a couple minutes, and slowly fades. But I often feel extra brain foggy the rest of the day when this happens.

    I feel terrified, so scared, when this happens. Does anyone have any words of solace or camaraderie by chance? This does not quite feel like a panic attack upon waking, as much as it feels like waking with complete disorientation ALONG with a panic attack sort of response. So weird... Any thoughts?

    Best to all ~
  2. IanH

    IanH Active Member

    I experienced this when taking opiate pain killers. Once I awoke and did not even know who my wife was. I thought I might be getting alzheimers dementia but of course I was not. I assume you have ME/CFS, if so then this is experienced by others even not taking opiates. I haven't had this for many years and I do not know why it went away except that I had stopped the medication.

    Do you take any drugs?
    What supplements do you take?
  3. happycfs

    happycfs Member

    Thank you for your reply.I do have ME/CFS. I have been housebound for many years now because of it. I am much too sensitive to take any medications though. This is happening all without any drug interaction at all. In a way, that gives me more anxiety to think of it.


    Thank you for your input.
  4. Mikie

    Mikie Moderator

    Any new symptoms, or symptoms which have increased dramatically, should be reported to one's doc. Good luck.

    Love, Mikie
  5. mbofov

    mbofov Active Member

    A couple of things come to mind. First, as Mikie suggested, talk to your doctor about this.

    But also, going without food and severe stress will definitely affect our bodies and our brains. Low blood sugar may be at the root of this, or part of it. You shouldn't go without eating - we're not made for that and it certainly is not a good way to deal with stress. My ex-husband used to get ocular migraines when he skipped breakfast so lots can happen with low blood sugar.

    Meditation is excellent for dealing with stress, as well as a good B vitamin complex and extra pantothenic acid.

    One other thing came to mind - I just recently read a very interesting post by ljimbo42 on 1/13, in response to Great Gran's post asking "do we ever get well" -
    ljimbo was housebound and unable to tolerate many supplements etc. - it sounds like you - until she went on a certain diet - her energy has picked way up now. Here's what she had to say:

    I understand how complicated and confusing trying to treat these illnesses is. I have been disabled since 1989 and spent several years in bed 80-90% of the time feeling miserably sick, exhausted and in pain. In the last year I have improved some, but in the last three weeks my energy has come up dramatically. I use to sleep 12 hours a day or more and still be exhausted,and need to naps throughout the day. Now I rarely take naps sleep 9 to 9 and a half hours a night and my quality of life has increased a great deal.

    What made the biggest change was taking methylfolate and methylcobalamin about 3 weeks ago. I tried to take methylfolate before that several times but even small amounts of 50mcgs would make me sick. I now take 200mcg methylfolate a day and 400mcg folinic acid a day.

    I believe the reason I was able to tolerate the methylfolate this time was because I went on the "FODMAP" diet for small intestine bacterial overgrowth (SIBO). That and supplements to heal my gut and kill off the bacterial overgrowth, slowed down the amount of toxins leaking into my system enough for me to tolerate bringing my methylation cycle back up a little.

    So this is what I have done, and am doing and its working very well. I am convinced that leaky gut, intestinal dysbiosis and a partial methylation block are my problem and treating them is the solution. I also believe that these conditions are very common in most people with fm/cfs. A lot of the most successful doctors in the field of fm/cfs treat these condition first and foremost, dr.myhill,dr.De Meirleir and many others.

    I found out after 8 or 9 months of aggressive treatment with supplements that I could not make progress without the fodmap diet. After being on the diet for only about 2 weeks I started to feel noticeably better. After about 4 weeks I was able to tolerate the methylfolate. So after 23 years I am finally getting some noticeable and sustained relief, so its never to late. Good luck to all!

    Take care-

    Waynesrhythm likes this.
  6. Nikki

    Nikki Member

    First, I would talk to my Dr.

    But, this has happened to me in the past.

    Yrs. ago, when my husband and I traveled home from several time zones, I fell asleep at home, too tired & exhausted to eat. I was home alone when the phone woke me up, and I had no idea where I was or who I was talking to. Extremely scary and embarrassing. It took me several minutes to figure out what was happening.

    I just chalked it up to exhaustion and hunger.

    I was caregiver for my mom for many yrs., but the last 10 yrs of her life she had Alzheimer's. So, I have not been shy about asking for an MRI on 2 occasions. Appears Lyrica was the primary reason for the problems w/my memory. I no longer take it. I take Gabapentin instead . . . for me, it works better.

    I am fortunate enough to have good insurance. My Dr. was happy to be able to do a base comparison. However, it could get expensive if I hadn't had good ins.

    Please keep us posted.

    Soft Hugs,
  7. MicheleK

    MicheleK Member

    I agree that you need to explain to your doctor what is happening to you.

    I have never experienced this kind of disorientation during the sleep/wake cycles. However I use to experience it while driving. I would suddenly not have a clue where I was, where I was suppose to be going, or even how I had gotten to where I was. I stopped driving for a long time because of it.

    My ME/CFS doctor told me this is quite common but he could not tell me why it had happened. We both just agreed that I should not be driving.

    With a neuoimmune illness, we tend to experience many things that as yet there is no real concrete explanation for.

  8. IanH

    IanH Active Member

    What is the Fodmap diet? Thanks
  9. sascha

    sascha Member

    brain fog is very much a part of cfids. brain inflammation is very much a part of cfids, therefore weird and troubling things take place. i can't summon up words- words i know perfectly well. they just don't come to me. they are gone from my brain and not to be found. also my brain often feels sore and i can't tolerate noise and confusion. it hurts.

    i get feelings of dislocation (losing sense of self and others and where i am) for short periods after i sleep during the day. i don't like napping during the day because i wake up feeling zombie-like and disoriented for some time. it's not as extreme as what you experience. i think parts of the brain do shut down for a time.

    maybe you could write yourself a letter to read and keep it with you for such times when you lose sense of self. even number your points with it stating exactly who you are, where you are, people in your life. maybe that could help you snap back into your world.

    i agree that diet and nutrition are very very important. find what works to keep your energy and brain power in as good shape as possible- and best of luck to you. salome
  10. mbofov

    mbofov Active Member

    I had to google it myself after reading ljimbo's post - it was designed to help with IBS, involves avoiding or cutting down on FODMAPs, which are short chain carbohydrates and monosaccharides which are poorly absorbed in the small intestine.

    google "FODMAP" and you'll find a ton of info. I just found it fascinating how ljimbo was able to get a lot of her life back by first fixing her digestive system, and now can tolerate essential nutrients which she could not before, and how her energy has picked up etc.

  11. happycfs

    happycfs Member

    Thank you everyone for your comments! I swear, this is THE best community of people... I have been comforted by you all.... Thank you!

    I love the idea about making a little list of facts about myself next to my bed. I have already begun doing that as well as photos, etc. Everyone has been sooo nice!
  12. Janina ev

    Janina ev Member

    Hi, I have just joined this forum, and read your letter. The reason I was seeking this on the web tonight, is because it's been happening to me for some time now, and no-one I know, and with whom I've discussed it with, understands it. They say things like, "Oh, yeh, i get worried about where I am in life, and what's happening to me", but your description describes precisely what I experience. i wake up and don't know who I am, where I am, and cannot identify with anything at all, and I madly try and find something to identify with, and it used to take a few seconds, now it seems to take over a minute. Indeed, it is terrifying. I've seen a therapist about it, who says it's an experience of dissociation, caused by stress, but I indeed understand how terrifying it is, and having that explanation given by a professional is little solace when it keeps happening.
  13. Bruin63

    Bruin63 Member

    hardly ever get here, due to fibro and other co-existing condition

    i had some experiences like other's,

    todaay in fact i had a case od what is called sun downers.

    today, ithought my hubby was going to work.

    he wa coming home from work.

    it was 7pm but i thought it was 7 am. to0k me awhile to believe him,
    he likes to play fibro tricks on me,

    i once was driving from ca. to idaho.
    as i drove through the desert area, out side of falon nv, i didn't know if i was coming or going.

    once i figured it out i went on to falon, and spent the rest of the day/night resting.

    very scary, i was dx' later that month by my rhuem. dr.

    it's clled fibro fog, by some, who knows we have a lot of weird symptoms.

    hands shaky, hope you can find some replies that can help you,

    looking for some know, thought i would check here first, fingers may never forgive tonight.

  14. happycfs

    happycfs Member

    Hi Everyone,

    I am happy to feel a little less alone, but still, sad to know that this happens to so many people. I have been seriously on a mission since I originally posted this. What I have found is that I live with something called "Depersonalization" disorder. It is in fact a form f dissociative disorder. It is where a person walks around in a haze, as if to be drunk or high, with a feeling of unreality. It feels like I am dreaming as I am actually awake, and the severity fluctuates. It is sometimes described as having the sensation of living in a 2-demensional world, when it is of course a 3-demensional world. Watching your life from behind a screen is another way of describing it.

    This happens to people who experience ongoing trauma fairly often. There are some things can be done about it though, through mind exercises and even medication. I cannot take medication, due to my chemical sensitivity, but I have been working on some mind exercises. If you Youtube the term "Depersonalization Disorder", you will find some helpful information from others who live with it.

    Don't know if this link will help, but here is a video explaining how it feels:

    Also, here is a great video from a young man who said that he has gotten better from suffering with it:

    ...You know what, I think that this is so important to inform people about, I think I will repost this into another posting to help explain this disorder. I think many of us have it and we don't know anything about it!

    Good luck, friends. You are all such incredible survivors! Thank you so much for everything.
    Waynesrhythm likes this.
  15. Mum-Mum

    Mum-Mum Member

    Hi- I stumbled on this thread by searching on Google for others who may be experiencing this "thing" too- I've been to see a neurologist for it- He did extensive blood work, had me go for an MRI and EEG. Nothing showed up- My symptoms, which are similar to what others describe here, sounded to him like Temporal Lope Epilepsy- But after having the tests he ruled that out- But the symptoms persist- He suggested they may be hormone related due to menopause- And while searching on Google for my symptoms and menopause discovered others going through menopause were experiencing similar symptoms- One person said that they began to take fish oil and that it helped- Not being big into supplements I began eating sardines on a daily basis and experienced remarkable improvements! However, it didn't last- Now I'm back to experiencing these out of body type, mind loss, chronic dejavu feelings all over again- But perhaps not at bad due to the omega 3's in the sardines? No way of knowing that for certain- The neurologist called what I'm experiencing Memory Hypermnesia- And yes, I do experience the depersonalization, however, it is accompanied by frequent feelings of dejavu that last and last and can even be triggered so very easily by so many different things and all of my senses, be it a sound, a smell or something I see- Thank you for listening- Having a place like this is greatly appreciated-
  16. JohnnyW

    JohnnyW Member

    Hello all, I found this thread through Google and I just wanted to write and say how helpful it's been. This morning I woke up after about four hours sleep with exactly the same symptoms as the OP. I've had it a couple of times in the past when I've been on anti-depressants, and I'd written it off then as a side-effect. I haven't been on anything for several months, but I just experienced it again :-/

    It's a very unsettling experience, but my anxiety really started after my brain back to normal again: What was that? Is it something serious? Will there be a time that it is irreversible?

    In a calmer mindset, I know that I've experienced one of (if not THE) most stressful months of my life. Not only that, but I let my normal meditation routine slip for a few days, and fell back into my old bad habits -- the past two nights I went to bed much later than I intended.

    I have a feeling that stress coupled with exhaustion/late nights are what caused this morning's bout, but I have a doctor's appointment tomorrow morning, and will hopefully learn a little more then. If it's something harmless, and not an indication/threat of permanent brain damage, I can live with a few minutes of confusion every so often. Especially if I can manage it with a sensible sleep pattern and meditation.

    At the moment I only have what was described in the first post (i.e. just when waking up, and only once every six months or so). I don't have any other issues throughout the day.

    Either way, I wanted to share my experiences, and say thanks to this thread, and especially to the OP for coming back and sharing what they'd discovered! Thanks.
  17. Mikie

    Mikie Moderator

    One thing comes to mind: If you hadn't eaten, you likely hadn't hydrated. Suffering from dehydration can cause this. So can letting oneself become too exhausted and stressed. The sleep we get under these conditions can be a very deep sleep which leaves us feeling disoriented when we wake.

    Love, Mikie
  18. Juloo

    Juloo Member

    The first time I read through your post I was uncomfortably reminded of my grandmother's situation in her later years and how she would wake from some naps thinking she was still a child, wondering where her mother was. She has dementia issues, so there's that.

    Everything said about diet, stress, seeing your doctor, etc., I second it. I just wanted to observe that you may be waking up (for whatever reason) in the midst of a deep sleep cycle, rather than a lighter one, or REM. When this happens to me, it's like a sLeep hangover, and I end up stumbling through anywhere from 1 to 4 hours before my more organized brain kicks in.

    Yesterday - a Tuesday - my husband woke me up when he kissed me on his way out to work in the morning. I spend almost ten minutes wondering why he hadn't let me know when he was leaving for church as I would have gone with him. Then got up to look for my son to fix him a weekend breakfast and found he had taken the car and driven off to who knows where! Fortunately, he had driven to school, which is exactly where he was supposed to be!
    Alyssa-Admin likes this.
  19. RadioFM

    RadioFM Active Member

    Hello Happycfs,

    I had a similar experience before realizing the root cause was chronic B12 deficiency. The best test to run is a methymalonic acid test: to evaluate your b12 status. Also, there are genetic factors to consider. You could have a problem recycling / converting b12 into it's active forms. My problem was methionine synthase polymorphisms (MTR) combined with low stomach acid (hypochlorhydria).

    See more info here: http://forums.prohealth.com/forums/index.php?threads/b12-deficiency-101.264411/

    Radio: (Pay it forward and never give up)
    Last edited: May 23, 2014
  20. Alyssa-Admin

    Alyssa-Admin Active Member

    All very interesting stuff...from supplement and vitamin deficiency (which I firmly believe so many of us have...and the symptoms we are experiencing aren't so much from FM/CFIDS but deficiencies in many cases). I also think that sometimes when you are exhausted and are woken up suddenly out of a deep sleep that you can get completely disorientated...in fact, my husband (who is perfectly well) had this happen last night...he fell asleep before dinner, I woke him up and he was completely discombulated -as I woke him from a deep sleep. Have you had bloods done recently to check for deficiencies? Just a thought...x