I now have nystagmus! WHY?

Discussion in 'Fibromyalgia Main Forum' started by Hope4Sofia, May 2, 2009.

  1. Hope4Sofia

    Hope4Sofia New Member

    Dr found that I have a pronounced nystagmus when looking to the right especially. This is new. He gave me no info on why. He is a new dr to me, so doesn't know my whole history but didn't seem all that interested. Seemed to suggest all my issues are because of this new finding.

    I have POTS, Orthostatic Hypotension, RLS, MVP, IR, cluster headaches, I don't remember what else. The nystagmus is new.

    Any thoughts? Any experience with this?
  2. 3gs

    3gs New Member

    I am sorry do you also have fibro/cfs?

    Could you explain what this is?

  3. Hope4Sofia

    Hope4Sofia New Member

    It's like when your eyes jiggle when they try to focus on things. Can't hold the gaze. I don't know much about it.

    I've been told I have FM, CFS, Dysautonomia. Frankly, I don't know what's wrong with me. I've never had a good dr spend enough time to put all the pieces together.

  4. TigerLilea

    TigerLilea Active Member

    Are you on any prescription meds as there are some that can cause this eye condition?
  5. TigerLilea

    TigerLilea Active Member

    If you have Nystagmus an eye doctor should be able to recognize it. I don't see how they could miss your eyeballs moving back and forth.
  6. and then, 'undiagnosed' so to speak, lol... my neuro says things sometimes, then charts them the opposite, same with test results, etc... he's a bit of a nutty/absent minded professor at times.. but, he's gold.

    My *eye* doctor (regular eye doc, not specialist or any sort, i.e. opthamologist, neuro-opthamologist, etc) said I had "end gaze nystagmus"..

    My neuro, by office tests, did not observe any.. then I went on Zanaflex (it CAUSED SEVERE* nystagmus!!) we're talking- stop signs, huge tree trunks, "shaking" like hurricane force winds were blowing them... which then threw my balance all to heck too..

    Went off the zanaflex, and, have never had the nystagmus that bad, or anything close even, since then..

    Have either of you two ever had an ENG (Electronystagmogram) ?

    It is a very helpful diagnostic test, and can diagnose inner ear problems, damage, hearing loss, brain functions, nerves- it helps to tell where dizziness, vertigo, balance problems may be stemming from, the brain, nerves, or inner ear, or a combination thereof...

    I had one in 2003, I believe, it did show hearing loss in my left ear, which does not surprise me, having fired several large caliber weapons in the military, without earplugs in... and very very loud exposure to music as a teen...

    I'm sure I have more damage now, having gone to concerts, (LOL)...

    I also have brain probs- (due to my MS/lesions)...

    When having an ENG- you should stop any/all meds you are on that help with dizziness, balance, vertigo, etc.... as well as all caffeine type stimulants...

    (My neuro never has had me stop my meds for these tests- 3 EEG's.... all while on 2-3 anti-convulsant medications, lol ??? EMG, ENG, etc!)

    As other people have said, and as my own story tells, many meds can indeed cause nystagmus, vertigo, etc..

    I have vertigo, but, have not had repeat, severe bouts since I went off some of my prior medications yrs ago, thank god... It was bad. (Positional) I have another friend with MS, who suffered for MONTHS with continuous vertigo (I CANNOT IMAGINE), and it caused her to VOMIT, constantly... she's a TINY little thing to begin with...

  7. this is just a **general** rant- but, what the HE** is UP with these 'doctors' diagnosing people with stuff, and telling them NOTHING about it..

    People, FIND YOUR VOICES! You've been told you have a new condition- ask every single question on earth about the condition! Get your money's worth for goodness sake! If you think of something later- call & leave the nurse/doctor a message, with that/those questions too!

    If they told you you had cancer- you certainly wouldn't leave there not knowing, what kind, where, what stage, and where you go from there...

    We definitely DO have to take charge- they sure as he(( don't want to!

    My hubby has had some odd skin rash that started on his ring finger, it has spread on his hand, and now his OTHER hand, just slightly- but, he has seen his primary twice, done anti-biotics (not nearly strong enough, and one that is normally done 4 x's a day, he was put on twice a day, one week!) twice, and is using the same cream that didn't clear it up months ago.... he just went to the dermatologist she referred him to... he waited forever, had a 5 minute visit... left with "keep using the cream" and a "follow up in 3 months"....... I was not at the appt with him, it was early morning...

    3gs I think it is, says he/she in the past had been dx'd with PARKINSON'S *AND* MS...... and "did all the drugs for both of them" I cannot wrap my mind around the irresponsibility of the doctor that did that!!

    The MS drugs- the interferons- can be VERY dangerous, harmful, and have MISERABLE side effects..... not to mention, cost anywhere from $800-$1400+ A MONTH! Insurances pick & choose (usually Copaxone) to cover- and that's that- they refuse the others.... another MS treatment is CHEMO, (12 doses- per LIFETIME- due to the potential heart damage, among other things-) but, that is when all else has failed.... but, my god! The PD & MS drugs... you don't just throw those at a patient, until you have tested, retested, & studied those results collectively...

    Take care of yourselves.....
  8. Hope4Sofia

    Hope4Sofia New Member

    Thanks for responding. I think the nystagmus is new but I have had episodes of vertigo in the past. I have been feeling car-sick a lot lately, so it makes sense. You don't notice my eyes twitching unless I look to the right. Dr only noticed it because I looked to the right to talk to him and he saw my eyes jump. Then he did some tests and said I definitely had nystagmus. Seems to be only, or primarily, in my right eye and, I guess, gaze invoked.

    I didn't know what questions to ask. Didn't have a clue what it might mean. NOW I've been researching it and am disturbed that MS pops up so much. I have many MS symptoms but MRI 3 years ago only showed migraine-like lesions. Also saw Lyme as a possible cause. Most say MS or neurological disease. GREAT!

    I will be asking Dr some more questions. Waiting for bloodwork to come in first.

    My vision has been worsening over the past year or two. Guess this makes sense. Just don't know why it's happening.

    Thanks again! Any more thoughts are always appreciated.


    OH, I meant to mention that I am not taking any meds that could cause this.[This Message was Edited on 05/04/2009]

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