Hi- Yesterday morning I woke up and had probably one of the most horrifying experiences to date. Abotu 7 weeks ago I was having dizziness upon getting out of bed - particularly if I got up from the left or laying on my back. I had written to my nuero and described the symptoms. She thought that it was most likely benign "positional"? veritgo and not related to my CIS diagnosis. It wasn't too bad, so I kind of did the " it will resolve itself" approach. I was doing Physcial therapy oddly enough at the time (recommended by my GP) for balance improvement and leg strenghtening exersizes when this was happening. He started doing the therapy for vertigo with my neuros approval but by that point it had already improved and really diminished........
until yesterday morning....
I woke up - during the night I felt the bed spins, but since I had been through it I just went back to sleep. Upon sitting up in the a.m. - both my eyes went into abotu 20-30 seconds of fast beating nystagmus on a straight on gaze - they wouldn't stop it felt like they never would. I screamed for my husband - crawled to the bathroom because It made me sick to my stomach - and the nystagmus stopped thankfully. I did the lay down, get up thing, for Eric so he could see what my eyes were doing. He confirmed the movement. The dizziness, vomiting etc. lasted for about 2 hours - It wasn't when I was standing or sitting upright, only laying to upright movement or tipping my head down between my legs and bringing it back up. I took 1/4 valium )didin't know if it would hurt or help) because I was emotionally horrified and fell back to sleep for about 4 hours. When I woke up I felt so much better. This morning I was afraid to get up - but all was fine thank god. Today - just tired and achy, but no more of the eye movement like yesterday. Has anyone else had this?? If so what did your doc suggest? I sent a note to my neuro this a.m. to keep her in the loop, but just want to know if anyone out there has been through this too - related to MS or no?
Thanks
Suzie
Hi Suz,
Wow, sorry to hear about this episode. I've had very mild nystagmus and it is very disorienting and nauseating. My neurologist treated it as a relapse (other things were going on too) and we did the full week of steroids.
Since this has happened, it might be possible to trigger the nystagmus in the doctor's office using a rotating barrel with alternating black/white stripes. It brought mine out (before I knew what was making me dizzy) and my neurologist could see the effect.
I'm glad that you contacted your doctor. Please let us know what he/she says.
Hi - i a bit concerned to post this here since i've been feeling truly sorry for myself lately and want to be positive. My doc has not yet responded, but i have to say that i had written that it passed fairly quickly, so don't know if she felt it was response worthy. I think i'll resnd the email telling her of my fatigue since the evnet and see what she says. thanks Lisa - i'll let you know..
Hi Lisa, so i sent another note to Doc and she said that it still sounds "peripheral" and to set up an appt in sept - an exam will tell what's going on". I called office and she's got nothing til october which i booked. I think she meant to say it still sound like positional verigo like she said the last time. Feeling really
"tired" - really dragging which i told her - and I guess I'm looking for a doc to say - "yunno what - i think I'd like you to come in so we can check this out". But I feel as if I'm just last thing on the list. I'm wondering if I should just call GP - Maybe he'll suggest the prednisone - it's all so bizarre as to who should suggest doing what - and my neuro is in the top MS office here in VT so I feel I need to trust her opinion. I'm really lost at this point.
But that's the scoop....
suz
just quick update - Eric emailed neuro, since my energy has just in the crapper the last few days - doc is getting me in in 1 week instead or 8 weeks....will let you know if anything comes of it...
Suz