anyone with similar symptoms?

[Deb M.]

Hi,

I'm new to this site...my doctor's are all baffled by my symptoms because they don't fit into a nice little box that will give me a definitive diagnosis. Since mid-March (after several upper respitory infections/asthma problems), I've been having horrible dizzy/vertigo spells where I feel like I'm going to collapse. Sometimes, I have spells where I am starting to faint. I haven't fainted yet, mostly because I lay down in time. I've been having heart palpitations and now have started having stomach problems. And when I have severe heart palpitations I become very short of breath.

The biggest problem is that I'm dizzy all the time. It looks like everything around me is slightly vibrating and my eyes feel like they're rolling all over the place. I can't really go into stores without becoming visually overwhelmed and feeling like I'm going to collapse. I also get the shakes during or after some of my spells. It's very scary. I've taken a medical leave from my new job and I'm only 28 years old!

The opthamologist found that my eyes were slightly shifting involuntarily (called nystagmus) every half second. They thought it was a problem with my ears, but they're fine.

After a few days in the hospital, the cardiologist figured out that I have Inappropriate Sinus Tachycardia where my heart beats too fast, which explains the palpitations. The neurologist thinks I have some form of dysautonomia caused by a virus, but that is only a guess.

I passed the Tilt table test (my blood pressure was fine), a brain MRI, CT scans, balance testing for my ears, and all the blood tests.

Anyone else have similar problems? I'm so frustrated and sick of being stuck in my house unable to drive or do anything! My doctor's are just as frustrated as I am because the tests aren't coming up with anything!

Thanks for reading this!

Deb

[Sunfish]

Hi Deb -

I said a quick hello under the tilt table test post, but again welcome. My usual byline is "sorry you have to be here but glad you found us." You'll learn a lot just browsing around the site & many others here relate to your frustration. This may sound odd, but as rotten as it is to not have answers, it is at least a good thing that your docs are frustrated too...it means they're not blowing you off, which many have happen with various docs. Hopefully their frustration will help them to keep helping you...

Regarding specific symptoms, I can relate to some of what you mentioned & not to a few other things. But everything you listed I've heard at least someone else on the site describe so it's not just you...

I definitely get "the shakes" when I pass out or am at a point where I'm close to it (and then lay down as you mentioned doing.) If I'm in a really bad place I'll have them for hours on end despite laying down.

I generally don't have the vertigo/vibrating/vision issue but several years ago had a few months wherein I did get really bizarre vertigo/spinning spells and they were absolutely miserable. We never pinpointed what brought them on or made them go away other than that it was a time I was doing horribly in terms of my autonomic symptoms in general, but I'm glad to say I haven't had them at all recently. (thanks...you helped me realize one of the few things i'm not dealing with these days!) Others may have more to offer in that realm. I'm not familiar with the eye problem your opthamologist found but various parts of the eye are controlled by the autonomic nervous system. I personally have problems focusing at times. Did the eye doc have anything to offer in terms of what to actually DO treatment-wise for the problem? Or can you ask him now since the ear-causation didn't bear any fruit?

I can relate though to not being able to deal with the visual stimulation when I'm doing well but generally at those times I don't have any interest or ability to go to a store anyway...I haven't been able to go to stores for long periods of time without sitting/laying breaks for some time, to varying degrees, and have just started to use a wheelchair to get some independence back...definitely hard on my pride/ego but ultimately a good & freeing thing for me in terms of where I'm at now.

When I'm tachycardic I also get very short of breath so can totally relate to that. Do you know what your heart rate did on the tilt table test? Many on this site don't have BPs that drop but have HRs that go up (or down) to the extreme. For me it depends on the day, but there are times when my BP stays steady low-normal so while your normal tilt does have meaning it's not the ultimate yes or no to your having an autonomic problem....there are false positives and negatives quite often.

I'm sorry you've had to take leave from work but glad you have the ability to do so. You'll find that folks on the board range every gamut in terms of what they're able to do with jobs, school, etc...and it often changes over time...in both directions. Currently I"m on long term disability through my employer and haven't been able to work since december but before that I've had varying degrees of working & schooling, including times of major improvement, so things can definitely turn around for you...I get your frustration age-wise too as I'm 25...there's lots of good input though from everyone on the forum of every age stage & situation.

And now that you've had your introduction to my rambling I"ll let you go...feel free to chime in, ask questions, etc...either on the board or by emailing or private messaging...there are a lot of good resources on the board for the taking.

hang in there!

:-)melissa

p.s. there are also lots of links posted at the heading of the forum boards (and in various posts throughout the board...but those aren't so easy to find!!)

[Poohbear]

First off, welcome to the site! There is lots of great information on this site and a lot of caring, supportive people.

You can do a search for lots of different information as you have the time.

One thing I want to say, be cautious about the inappropriate sinus tachycardia diagnosis. It may or may not be accurate although I'm not putting the Dr down. Unless they are used to seeing and treating patients with Dysautonomia it's easy for them to misdiagnose. The rapid, inappropriate heart rate could be a symptom of POTS and if that is the case you want to try medication but don't let them do ablation on you because they have learned the past few years that with POTS if they do ablation it makes people worse. I'm not trying to scare you....just trying to give you info so you can research this yourself and make the best informed choices you can.

You may have dysautonomia as a result of a virus (which could have been responsible for you dizziness and inner ear issue). It is possible to have a virus attack the inner ear and you never know it aside from dizziness (ie. you don't have to run fever, feel tired, achy etc).

I hope you will find some answers soon and above all, I hope you start feeling much better!

[briarrose]

Welcome

Have you picked up a copy of your medical records. I found that even when they told me everything was fine, some of my values would be off and when I asked about it they usually didn't know what it indicated. I'm mentioning this because I'm wondering about your tilt table and how it was done. What was your heart rate during the tilt? And did they give you any medication while you were on the tilt table? Were you on any medication prior to the tilt?

Second, I was having extreme difficulty with my eyes. My MRI showed a small spot in my brain but nothing that concerned the neurologist. My ophtamologist suggested that I get my Vitamin K level tested as this sometimes causes difficulties with the eyes.

[Deb M.]

Thanks for all the info!

I don't have any of the info on the tilt table test. I just got the results back from the neurologist a few days ago. But my primary care physician is having me get a second opinion from another neurologist in Boston who is considered one of the best in the system. And I've been told to see a neuro-opthamologist as well. I've made the appts for both but I couldn't get in until August!! ugh. At least I'm on their cancellation lists.

Well, the ENT told me that I don't have any problems with my ears and my dizziness must be caused by something else. I know there's a condition called labrynthitis where a virus affects your inner ear, but the tests proved that I don't have that... That's why I'm seeing the neuro-opthamologist.

I was diagnosed with Inappropriate Sinus Tachycardia when my parents took me to the ER two weeks ago. I was having horrible heart palpitations in the middle of the night and then I started sweating like crazy and began to faint. I was laying flat at the time. Then my tongue and teeth went tingly and numb. Very scary. So the doctors kept me in the hospital for two days and kept me on a heart monitor. My heart rate was high when I was just laying there and shot up when all I did was walk 10 steps to the bathroom and back. They put me on a very small dose of Atenolol to see if that would work and Klonopin to take when I'm dizzy as an experiment. The Atenolol is working so far. My heart rate has gone down a lot! But I still feel like it's not enough. My doc wants to up my dose, but I need to be monitored while on it because of my asthma.

I don't think my IST is serious enough to warrant an ablation, which I don't think I'd agree to anyway. Hopefully, my heart will calm down on it's own...

My blood pressures have been fine whenever anyone checks it. My neurologist did see that my pressure goes up a tiny bit from sitting to standing, but it's still within the normal range. I've been checking it at home too and it's always normal...

I'm heading for a two week vacation with my parents to Colorado tomorrow! I'm a little nervous that I'm gonna have problems there, especially with the altitude, but my father thinks I desperately need a change of scenery! I agree.