Klutzo - Nystagmus

Discussion in 'Fibromyalgia Main Forum' started by ssMarilyn, Jul 12, 2003.

  1. ssMarilyn

    ssMarilyn New Member

    I'm researching this on the net and so far what I've seen says it's caused by poor nutrition, particularly a magnesium deficiency. Is this what you know about it? Is there a cure?

    Marilyn:)
  2. ssMarilyn

    ssMarilyn New Member

  3. klutzo

    klutzo New Member

    I never heard it was caused by magnesium deficiency, but since we have magnesium assimilation problems, it makes sense. That would also explain why my nystagmus has gotten so much better since I started taking magnesium...I never made the connection.
    I was told it was due to my head and neck injury, since the neck muscles make up 1/3 of the balance system. My inner ear is messed up too, which is another 1/3, so the only part of my balance system that works is the final 1/3, which is my eyes. For that reason I can't drive at night any more, and until I put night lights all over the house, I would fall over whenever I was in a dark room. I hurt myself several times at first, until I learned that I could not be in complete darkness.
    I was not given any ideas about cure, just medicines, all of which made me worse, so I quit them. I do find antihistamines helpful for the motion sickness that all nystagmus patients suffer from.
    I guess if you are researching this, you must have it, and I am sorry for that. A few minutes of severe nystagmus can seem like a few hours and make you feel you are going crazy.
    Thanks for teaching me something new about the magnesium.
    Klutzo
  4. ssMarilyn

    ssMarilyn New Member

    Sometimes I have this so bad I don't dare leave the house. Yesterday I walked around inside with my arms out, just in case I had to catch myself. I hate it! Lately I've had alot of neck and lower back skull pain...aching, tense, etc... I lay in bed at night for a couple hours to watch tv before I go to sleep and I prop myself up on 2 or 3 pillows. I've noticed that lately my head and neck start to hurt after a very short while like that. I wonder if this is what might be causing the vertigo?

    Marilyn :)
  5. Goodday

    Goodday New Member

    I have dizzyness when driving. Somewhere it was stated that drammamine (sp?) helps that. Is this also a sign of Nystagmus? I has gotten bad in the past year. I also almost fall over in the darkness. I also have cervical problems and other spinal problems. A doctor will check your balance by telling you to close your eyes and stand on one foot while holding the other foot up. If you loose your balance there is some kind of nerve/spinal problems. I cannot walk putting one foot in front of the other one, heel to toe and take a step forward. My neurologist asked me to do both tests and I lost my balance on both simple tests. My MRI shows DDD, 5 bulging discs, and spinal stenosis in lower lumbar. Cat scan shows spinal spurs and a partial cervical fusion. No wonder I can't walk straight. It is the inability to drive much these days because of neck, shoulder and muscle spasms, panic attacks, and dizzyness. I am going to try that pill if you say it works Klutzo, or what does? I used Alazolpam for a long trip recently but I don't want to become reliant on them!!

    What do you do for the Nystagmus and does this sound like I have it?

    Sorry Marilyn about the interruption. I do take plain old magnesium alone and also some in my Citrate calcium/magnesium tabs. One of each per day seems to help me with muscle twitches. Goodday all.
    [This Message was Edited on 07/13/2003]
  6. ssMarilyn

    ssMarilyn New Member

    Interrupt all you want! The more I read, the more I learn!

    Panic attacks are the pits, aren't they?

    Marilyn :)
  7. klutzo

    klutzo New Member

    Marilyn - I was told that bending the head forward puts tremendous weight and pressure on the neck, and that I should not ever do it with my neck injury. When I read in bed, I use a "husband", a stuffed pillow that has arms on it to support you...I'm sure it has another name, but that's what we called them in college, and that's all I know it by. When I read anywhere else, I stack pillows on my lap until the book is at my eye level, so I don't have to look down, let alone bend down at all. Check the angle of your head on your neck when you are watching TV? Is your head sitting straight or is your chin tucked under, meaning that your neck is bent forward? You may benefit greatly from some Physical Therapy on your cervical spine...I know it helped me and I can do the exercises at home now. I also love my water pillow. Nothing supports the neck better. I am so sad to hear you are having this trouble....I thought thyroid medicine was making you all better, and was hoping it would do the same for me. BOO HOO on both our behalfs!
    Another tip: I was told by my Neurologist that I should never let them wash my hair at the beauty salon. bending an injured neck backwards can cause a stroke. They didn't have to tell me that, since the last time I did it, it hurt so much I started having palpitations. I only get my hair cut once a year anyway, and now I arrive at the salon with clean, wet hair, rather than take the risk. Due to my chemical sensitivities, I always book the earliest appt. on a Tuesday.Tthat way the salon has been closed for two days to air out and nobody else has been in there before me with allthose hair sprays, perm solutions, etc. for me to get sick from inhaling them.

    Goodday - I would never take Dramamine and get behind the wheel, but you might try it sometime when you are a passenger and see what it does for you. Some prefer Bonine to Dramamine, but either one makes me dreadfully ill and I can't tolerate them. They are much too strong for me, which is why I use Benadryl. For any trip of 30 mins. or longer, I need to take both Benadryl and Alprazolam, or I am in big trouble. I have been dependent upon Alprazolam (aka Xanax) for 17 yrs. now. Without it the neck spasms make my nystagmus so bad that I fall over, as mentioned in my earlier post. I have withdrawn from Xanax four different times in the past 17 yrs., and each time my nystagmus became so bad that by the third day without the drug, I was falling over again. I will probably have to take it for the rest of my life.
    It does sound like you have nystagmus, but there are tests if you want to be sure. Standing on one leg with your eyes closed is one test, as is shaking your head vigorously and then following a doctor's finger moving back and forth in front of your eyes. I can tell I have it just by sitting very still at the computer and noticing that my body moves just a bit to the front and left with every heart beat. There are different types of nystagmus, and what I have was dx'd as a "great, left, beating nystagmus". Now my doc says I have it on both sides, but I only notice the movement to the left. The definitive test is Electronasography, or ENG for short. It is a VERY unpleasant test, and I would not recommend it, since they will just give you Dramamine, Bonine, Benadryl, or Cortisone anyway for the problem, whether you have the positive ENG test or not. If you were trying to prove disability, or had other symptoms that might suggest a brain tumor or seizures or dystrophy, then I might go ahead and get it done to help with that. A neurologist would be the one to consult if you are concerned. I can tell that you are not in the good old knife happy USA, because with allthose disc problems and spurs to boot, the surgeons would be wheeling you into the operating room over here! I refused the MRI for just this reason. I knew it was only to prep me for surgery, and I do not trust spinal surgery. Physical therapy helped me SO much with my pain from the spurs (I have DDD too).

    Sorry I don't have any solutions for this. At least you are not being mis-diagnosed with MS as I was for almost four years!

    Hugs,
    klutzo
  8. ssMarilyn

    ssMarilyn New Member

    The thyroid meds have improved me alot in that I don't have any pain to speak of, am not depressed, and I sleep better than I have in over 20 years! From reading all your comments, I just betcha that the way I lay in bed at night is causing my vertigo. My chin touches my chest when I lay in bed, propped up on pillows, and I always pull my t-shirt up between my chin and chest so that I don't sweat there, cuz it bugs me! Now even when I lay on my side, with my head propped up with my hand/arm, the side of my face and head hurt. Even just laying my head on the pillow makes it hurt a little bit. I wonder why this is just now starting to bother me, because I have watched tv in bed for many years.

    Marilyn :)
  9. Goodday

    Goodday New Member

    Thank you for the information, both of you! I never go to a beauty shop either because of my neck, I went four years ago and hurt so bad and got so dizzy with my head bent backward. I never knew about getting a stroke!

    I did take Alazolpram while driving only 1/4 of a pill and felt weird when it started to wear off. My hubby is thourghly disgusted with me because he can't drive with his bad eyes. I am the sole driver of this family......I have to find something that helps. With my thyroid meds more than 1/3 pill of Benadryl sends me into a fit of hyperactivity, internally. If you can understand that feeling. I have no thyroid and am taking Synthroid but can't get doc to do T3 and T4 tests. I need to go to an endocrinologist.

    Thanks for the responses. By the way I am doing OK with pain management on the low dose fast-acting Naltrexone and this is my third month. I wish it would help 100% with the driving though. I think my immune system is kicking in now because my chronic tonsilitis with swelling is down and other little improvements is noticable now. Going to Doctor today and will ask him about the Nystagmus!! Thanks for the tips, I appreciate it. Goodday


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