zaks27 Posted February 2, 2011 Report Share Posted February 2, 2011 Hello everyone! I'm a Newbie, although I've been lurking for months. I was diagnosed with POTS after my TTT in June. My symptoms started in March and my PCP didn't know what was going on. He even brought in a medical student (LOL) to work me up after his exam. Anyway, I was referred to a cardiologist who did the Holter, 24 BP cuff, treadmill, heart scan and Tilt. I was diagnosed with sinus tachycardia and POTS. Pinolol didn't help (slowed my heartrate, but bottomed out my BP), and Florinif wasn't very helpful either. I'm now on Midodrine 10 mg every 3 hr. while upright. It's not helping much anymore--I've never had my BP go above 118 systolic (even laying down). I also use 40 mm compression hose. BTW--I believe the cause of my problems was bariatric surgery I had in Feb. of '09. I've lost 112 pounds since the time of surgery. So, here's my question: I have, like so many of you pre syncope, lightheadedness, dizziness and vertigo. I haven't seen and ENT for an ENG yet, but I can bring on the vertigo easily just by positioning my head. I figured it was just BPPV and didn't think an ENT could be of much help. When I have my vertigo, it's short-lived--lasts maybe 3-4 seconds--but can be very violent. I've noticed my eyes bounce up and down when this occurs. Does this happen to anyone else? I always thought of nystagmus as being horizontal. When I Googled "vertical nystagmus" I found it could be serious. Any comments from anyone with this symptom? I see my PCP next week and will probably go ahead and get a referral for an ENT visit. I guess I figured I shouldn't worry too much if everyone else has the same symptom. Thanks so much for your help. Hug to all! Quote Link to comment Share on other sites More sharing options...
Noreen Posted February 3, 2011 Report Share Posted February 3, 2011 Glad you found us but, of course, am sorry for the necessity to do so. It is great that you got dx so quickly but it is rotten that none of the standard meds are giving you even a bit of relief.I remember reading a member story where the gentlemen also attributed his dysautonomia to bariatric surgery. If you go to DINET main page and look down the left column you will see a link to member stories. Just thought it might br small comfort to know you are not alone I have nothing to offer re: nystagmus. I would encourage you to check it out with your PCP and see a neuro if he/she recommends. Quote Link to comment Share on other sites More sharing options...
bkweavers Posted February 3, 2011 Report Share Posted February 3, 2011 Did you search this site concerning this subject? I want to say that I read about someone else that had the same eye movement thing that you described. I would check this site first. I know that there is specific therapy for that type of dizziness/vertigo. They do different positioning of your head and I believe they would also have you do exercises at home. You would go to a physical therapist who specializes in vestibular therapy.God bless,Brenda Quote Link to comment Share on other sites More sharing options...
zaks27 Posted February 3, 2011 Author Report Share Posted February 3, 2011 Hello Reen and Brenda! Thanks so much for your replies. I did search on the forum for "vertical nystagmus" and "nystagmus" and though it is a fairly common phenomenon, I only found one mention of 'vertical nystagmus" without any mention of what the causative factor was. I know BPPV can be treated with head tilting exercises (my hubby and I have tried doing them at home--the procedure is on several sites online). The exercises haven't been very successful. My concern was whether anyone with the vertical eye movements (bouncing like a ball) indicated something different from the horizontal movements, most often referred to. The thought of Chiari or some other brain malady is frankly freaking me out. The process in getting appointments is going to a long, drawn out procedure since I'm on a Medicare Advantage Program and everything needs a referral. I see my "gatekeeper" PCP next Thursday. I don't even think a neuro-ophalmologist is on the HMO list--at least not in Spokane! I guess I was just looking for some comfort that it's just the dysautonomia and not to sweat it...Thanks again! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 3, 2011 Report Share Posted February 3, 2011 I am one that is pretty sure I have horizontal nystagmus. I have actually referred to my eye problem as "bouncy eyeballs" for years! I see that is how you describe your issues! If I look at my vertical striped wallpaper, it "jumps", as in the lines wave quickly back and forth.I know, wallpaper??? That was my project when POTS hit me--to get rid of all the wallpaper and paint. And now I can't afford to hire someone, so I just have to live with it. Quote Link to comment Share on other sites More sharing options...
zaks27 Posted March 5, 2011 Author Report Share Posted March 5, 2011 Just a follow-up. I had an ENG at an ENT office and find I have "torsional" nystagmus. My eyeballs are actually are going in circles! I was taught exercises to settle the calcium crystals in the inner ear and am doing much better with the vestibular symtoms. Also my massage therapist found a ligament in my neck that she said was related to vestibular problems--it was like a tightened bowstring--she worked on it and again it really helped my symptoms. Hope this helps anyone who may be having simular problems. Quote Link to comment Share on other sites More sharing options...
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