New Symptom

Discussion in 'Fibromyalgia Main Forum' started by revlcb, Mar 18, 2007.

  1. revlcb

    revlcb New Member

    This has happened twice in one week. Not even sure how to describe it...

    Both times, while sitting in the shower, I'll have this odd brain-thing happen. I'll feel a bit dizzy, but not to the extent of vertigo. I can feel myself mentally zone out and my breathing will become shallow but of normal rythum. I feel as though I'm in a void and my brain is shutting down. It feels sort of like I'm sinking inside of myself. (And no, the water wasn't too hot in the shower :)

    This same thing happened two years ago when I had a 6 month major flare, but I couldn't explain it to the Drs. then either. At that time these episode would happen at different times of the day, even once while driving, which really scared me. The Drs. just looked at me as if I was out of my mind.

    I know this sounds odd and I'm sorry that I can't find a better way to explain it. I was just wondering if someone could shed some light on an odd symptom.

  2. JessB

    JessB New Member

    I have had something similar. The dizzy but not full on vertigo, and you have to sit down. Do you feel like everything is really far away and nothing makes sense. If someone is talking you can hear them but you can't understand them? That is what I get, the only thing that works for me is to sit down and put the heels of my hands over my eyes and do some deep breathing. It still takes a good 15-20 minutes before I can even think about standing up or moving. Then I feel totally wiped out for the next few hours. Haven't talked to my dr. I thought maybe it was some type of low blood sugar thing? Sorry I can't help but I would be interested in an answer too.

    Keep Hope.
  3. woofmom

    woofmom New Member

    I used to have to lay down in the middle of taking a shower. It felt like the warmth drained every bit of energy from me. I think it's a symptom of CFS.
  4. bunnyfluff

    bunnyfluff Member

    I call it sort of *shrinking*.

    Maybe what they refer to as "Alice in Wonderland Syndrome"?

    It will happen to me while watching TV even.
  5. TerryS

    TerryS Member

    I'm not 100% positive we're talking about the same experience, but I've had problems like this on and off since my teens, as has my oldest daughter.

    We call it our "out of body experience"...
  6. footballmom

    footballmom New Member

    I think it feels like I'm on the outside looking back at myself. A very weird sensation. I've had it for many years. I remember telling my doctor about it 25 years ago and he just laughed at me and said I was fine.
  7. woofmom

    woofmom New Member

    It's been a long time, but, I used to get "Alice in Wonderland" syndrome. It used to happen as I was falling asleep. My head, feet, or arms would become HUGE as the rest of my body shrank.
  8. suexi

    suexi New Member

    The "Alice in Wonderland" syndrome??
    hmmmm, sounds like something i feel quite
  9. woofmom

    woofmom New Member

    It's a real medical condition symptom related to migraines, I think. It may be caused by mercury.
  10. revlcb

    revlcb New Member

    Now that's an option to look at. I have been treated for migraines for the past 15-20 years with a beta blocker. I've only had one migraine break through and it was the worst headache I've ever experienced...almost to the point of an ER visit.

    I have had a mild headache since about 11:00 am but I put that down to stress from working. Now I have to think, am I having migraines side effects without breaking into an actual migraine? Definate possibility.

    Checked into the Alice in Wonderland symdrome. Can be caused by migraines as well as Epstein Barr, which I'm chronic. Will definately bring this up to Dr. Maybe the beta blocker dosage needs to be played with.

    Also, I remember intentionally breathing deeply and this seems to help when I feel this odd sensation coming on.

    Thanks all. I thought you'd all think I was off my rocker. Now I realize that we're ALL off our rockers. :O)
    [This Message was Edited on 03/19/2007]
  11. woofmom

    woofmom New Member

    If you were thinking about going to the hospital then you may have had a "cluster headache". I've had two bouts of them. It was the worst pain imaginable. I started taking magnesium, Co Q-10, and other supplements. I also completely avoid ALL food additives. I haven't had a headache in almost a year.
  12. Shalala

    Shalala New Member

    You're hallucinating, and you know it. Time is messed up. First it seems slowed, then it seems to be speeding up. Even more noticeably, when you look at your body, it seems to be morphing. You're getting smaller. Minutes later, you're growing larger and larger.

    That's a description of "Alice in Wonderland" syndrome, a rare form of Migraine aura. The most distinctive symptom of "Alice in Wonderland" syndrome is this type of metamorphosia, a distortion of body image and perspective, which Migraineurs know is not real. "Alice in Wonderland" syndrome can occur at any age, but is more commonly experienced by children.

    "Alice in Wonderland" syndrome was first described by C. W. Lippman in 1952. J.Todd actually named this aura "Alice in Wonderland" syndrome in his 1955 article, "The syndrome of Alice in Wonderland," in the Canadian Medical Association Journal. He named it for Lewis Carroll's "Alice in Wonderland" and "Through the Looking Glass and What Alice Found There." Carroll is know to have been a Migraineur, and it's thought that much of the imagery for these writings may have been inspired by his own Migraine auras.

    The name comes mainly from the opening scenes of "Alice in Wonderland," after Alice jumps down a rabbit hole and lands in a hallway where she finds a bottle which she drinks that causes her to shrink: "I must be shutting up like a telescope. And so it was indeed: She was now only 10 inches high … " Later, she eats a piece of cake that makes her grow: "Curiouser and couriouser," cried Alice. "Now I am opening out like the largest telescope that every was! Goodbye feet! (For when she looked down at her feet they seemed to be almost out of sight they were getting so far off.)"
  13. suexi

    suexi New Member

    It sounds like a Bad Acid Trip!!! How Scary... noooo on second thought That doesn't happen to Me, thank god. I have enough weird Symptoms! Im freakin out just thinking about
    Thanks for explaining the "alice in Wonderland" Syndrome.
  14. revlcb

    revlcb New Member

    After reading more on the Alice in Wonderland syndrome I don't feel that this is what I'm experiencing. When I say sinking I feel as though I'm sinking inside of myself. As I've said in previously I can't seem to find the right words to describe what I'm feeling.

    From what I've read, unless I'm understanding this incorrectly, Alice in Wonderland is when you feel as though a part of yourself is greatly exagerated or smaller than it's actual size. I don't feel this. I feel as though I'm sinking inside myself.

    The only thing I can associate it with would be the feeling I've gotten before I've passed out...which was only once in my life so by no means am I an expert.

    I feel that this is CNS related, as there's definately something going on there...Dr.'s just can't say what. Maybe this is another clue.
    [This Message was Edited on 03/20/2007]
  15. Crispangel66

    Crispangel66 New Member

    and many others I know what you are talking about. I feel like I am in a bubble and can't hear others very well and feel like they couldn't hear me. Also like if I screamed for help they wouldn't be able to help. Pam (crispangel)
  16. greatgran

    greatgran Member

    Not sure if its the same thing, but I have symptoms and for a few seconds feel dizzy, seems longer, then a weird out of it feeling, like I might pass out or just out of it..Sorta a blacking out feeling..

    I never know when these "spells" are going to its a bit scary especially if you are driving..its almost like something is happening inside my head.

    If i can sit or lie down it helps, sure is hard to describe.

    My doctor hasn't a clue,could be anxiety, but she doesn't understand CFS..I have had this feeling off and on since the cfs so don't think its anxiety, I do get anxious after the episode.

    God Bless,
  17. JessB

    JessB New Member

    I agree. I don't think I have the Alice in Wonderland. It feels more like everything just moved about 1/4 of a mile away and nothing makes sense. I too have only passed out once before but I see what connection you are making. For me it was like when I came back from passing out, the confusion and everything at a distance, I could hear people talking but it did not make any sense.
    I guess that you can take comfort from the fact that you are not the only cracker in this barrel.

    Keep Hope.
  18. Clay2

    Clay2 New Member

    Getting too warm can set off a cytokine storm within your immune system. I don't know the symptoms though.

    Another weird thing I've experienced (not applicable here), is sleep paralysis. There's a few minutes between sleep and awake where your mind can be functional but you can't move. People tend to hallucinate during this time and it's very scary until you figure out what's going on. I would just lay there paralyzed and hear heavy footsteps coming closer and closer. Other people feel a large weight on their chest. Fascinating stuff, but purely mental and explainable.
  19. tcpolchies

    tcpolchies New Member

    I'm sorry, had to laugh about soem of the replies to the "Alice in Wonderland" experience. I have never taken acid, and after reading soem of the replies, I'm glad I read through them all! HAHAHAHA! I don't mean to be rude, it's just that the post placed a long needed smile on my face, thakn you all.

    I get that same feelign your describing. To me it's as if though I'm fading out -physically drained, dizzy -light headedness, and things don't appear as they normally do -surroundings. I usually sit doen and do as one here descrobed place my palms over my eyes until I can lift my head and have a normal visual again. Shortly after, I have to lay down. My leggs get to feeling liek wet noodles. Wondering if these sensations are brought on by envading spirits -ghost. Oh, Oh, I sound like I'm on a bad trip of acid, hahahahaha!

    T in NM.

    [This Message was Edited on 03/21/2007]
  20. froggyfog

    froggyfog New Member

    Now I know we are all crazy LOL. Seriously I can relate.

    Mine is right when I get confused and my brain fog is at its maxium.

    My head feels empty (I know go ahead and laugh) but that's the only way to exlain it. It's like nothing is connecting, no thought process...but actually I am thinking....I'm thinking what in the world am I suppose to be doing right now? Werid huh?

    P.S. Doctors always look at us as if we are out of our mind because they don't have a clue about this illness and its many symptoms.


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