Orthostatic Intolerance

[dmfrank323]

Hi!  I am a 25 year old female and have been dealing with my condition for almost four years now.  Four years ago, after giving birth to my second child, I started having these crazy spells where I get dizzy, have this feeling of having been here before, nausea, sometimes shake, sometimes just hurts all over, always leaves me with severe headache, and is always followed by fatique ... like I could sleep for the rest of the day.  I have fainted a couple of times.  I have seen a few different doctors over the years and have had two EEG tests done, an MRI, and all were normal ... lot of blood work and everything is always normal!  I have been put on medication for panic attacks which helped nothing and have also been put on medicine for seizures which seemed to make it worse ... I was falling over for no reason.  I will be seeing a nuerologist for the first time next month and while waiting on that appointment all of my friends and family (obviously concerned) have been hunting what could be wrong.  Well, I recieved an email from a friend that had found some info on orthostatic intolerance and I have been reading over the symptoms and all and will say that it does sound like it could possibly be what I have.  What do you think???

[Heiferly]

Theoretically, POTS would show up on a TILT and that's probably what most if not all docs will tell you.  Anecdotally, if you talk to a bunch of POTS sufferers, you'll probably find plenty who can tell you that they have had at least one TTT that came up negative or borderline.  Why?  Who knows?  I monitor my heart rate at home with my blood pressure cuff and more recently with a wrist monitor.  The wrist monitor (because I can reference it so frequently and conveniently) has been VERY telling.  First, I learned that I was having tachycardia a lot more often than I realized.  Second, I realized on bad days just sitting up does it (rather than needing to fully stand up to trigger it).  Third, I found out that there are times when I can stand up, sit down, do the hokey pokey, and my heart rate stays perfectly normal.  And finally, I see absolutely no pattern as to what makes a good day versus a bad day and no consistent relation whatsoever to my medications (sorry docs, sad but true).  

So in my opinion, it's *possible* that you have POTS but your heart just didn't put on the show for the tilt.  What you're looking for in terms of POTS is tachycardia (excessive heart rate) upon standing.  Specifically, a rise of 30 bpm or a heart rate over 120 bpm, if I remember correctly.  Can you get a blood pressure cuff at home (make sure it displays heart rate as well) and start monitoring to see if you're seeing spikes in heart rate indicative of POTS?  (Some insurance will pay for the monitor if your doc writes you a rx.)  The wrist monitors, in case anyone is curious, are more expensive . . . and I didn't even try running it through my insurance.  Don't know if anyone knows if that would fly??

Oh, and yes, neurocardiogenic syncope, neurally mediated syncope, vasovagal syncope . . . six of one, half dozen of the other.  It WOULD be helpful if the docs would all just pick ONE term and stick with it instead of confusing us.  

[rosydp]

Hi, I'm a 41-year-old female who just completed a positive Tilt Table Test - with the diagnosis of Neurocardiogenic Synoscope.  Is this the same thing as NMS?  I've been feeling like I was dying for over 8 months.  Exhaustion, dizziness, nausea, facial pain, headache, insomnia, lightheadedness, etc. I've had these symptoms before, but always after an preceeding event (childbirth, surgery, etc.) and have never lasted this long.  This time it all started out of the blue.   I've been to nearly a dozen different types of specialists, from endocronology to rheumatology - no clear answers.  The TTT was the first 'clear' positive - other tests indicated I was often out of 'normal range' - but not enough to make specialists be concerned.  One unique finding (the one that made me start the whole diagnostic circus) was gross hematuria - 4 different episodes, each about a month apart (no, I had a hysterectomy 3 years ago).  I still have the abdominal (upper left, tucked under my ribs) pain that I originally presented with.  I've also got the most horriffic neck pain that just won't go away (2+years)  I'm wondering if its possible that I have POTS, or if that would have been differentiated on the TTT results?

[dmfrank323]

Thank you so much for your response!  Very helpful and will be discussing this with my doctor! :)

[Heiferly]

The feeling of "having been here before," or deja vu, points more directly to seizures.  There is a type of seizure that is known for this.  That would also explain the dramatic fatigue afterward.  Information from the Epilepsy Foundation shows that many people with epilepsy have repeated EEGs before their seizures show up on one, so negative EEGs alone do not necessarily rule out seizures.

That being said, dizziness, nausea, headache, and fatigue can also be symptoms of orthostatic intolerance.  What you need to request is a tilt table test.  It is also helpful to get a blood pressure cuff (one that also displays heart rate) for home and start monitoring regularly (both when you do and don't have symptoms).  Keep records of lying, sitting, and standing blood pressures and heart rates.  A good record of BP/HR can help make the diagnosis because it gives your doctor much more information about what is going on at home beyond the small glimpse they get during the tilt table test.  

You may want to schedule an appointment with a cardiologist.  Despite the neurological nature of the symptoms and the neurological roots of the disease (the autonomic *nervous* system), the manifestations of the disease are cardiovascular and it is often cardiologists that run the tests which detect the disease and the diseases which are frequently comorbid (such as mitral valve prolapse).