I went to an EP- Cardiologist yesterday and thankfully he realized how serious, unpleasant, and dangerous this condition is!
My EKG and blood tests for vitamin/mineral deficiencies and thyroid function (there might be more that he did, but those are the ones i remember) all came back normal. The blood pressure and heart rate tests he did at laying, sitting, and standing came back abnormal, which we knew they would.
He said a tilt table test was unnecessary based on my symptoms and the blood pressure/heart rate tests. Even if it were to have come back negative he said it would be a false negative.
He started me on Midodrine 5mg 3x a day. So far this has helped moderately, but I think I need to increase the dose to 10 mg. The black out spells are less severe, but still present. Also, this has not helped the heart rate issues yet. I am working on getting a blood pressure cuff to monitor my heart rate and BP at home. I will call him in a week with blood pressure and heart rate and go from there.
The doctor also said he may want to add in Florinef, which originally I thought was a great idea, but after researching it I realized that it increases intracranial pressure. This is normally not an issue, but as I also have Chiari malformation this sounds like a very bad thing to do.
I am slightly confused on how to determine which form of dysautonomia I have. He did not say which type it is and I am not sure that it even really matters as they all are treated the same it sounds like... I am guessing it is POTS as this is the one most commonly linked to Chiari, but I am not sure how to be positive of that.
Sorry for the lengthy post! Also, I just realized there is not actually a question anywhere in there! If anyone has any input on any of this or suggestions on how to proceed I would greatly appreciate it!
You might also want to learn from a holter monitor if you are having tachycardia (rapid heart rate) at rest as well as having orthostatic intolerance (with standing problems). I had someone suggest to me to get tested for Chiari's with an MRI, but that came back negative.
Chiari's I believe can cause both migraines and rapid heart rate. I personally have both P.O.T.S. (tilt table diagnosed) and I.S.T. (diagnosed prior to tilt table test). Inappropriate sinus tachycardia can happen even when at rest and my heart can go over one hundred even when I sleep in recent years.
I would recommend you check with your neurologist about Chiari's and Florinef for their opinion- if you have the migraine issue, I'd be wary too.
While NCS as well as POTS are things a tilt table test is useful in diagnosing, it is not a pleasant test and it might be just as well that you skip the test. A standing norephinephrines blood test (over 600) is another criteria used in diagnosing P.O.T.S. (though they didn't bother with that particular test on me).
Did the doctor also advise you about increasing salt intake? (You may want to be careful not too much, because I got a migraine once from overdoing myself, I think.) What about compression stockings? And drinking lots of fluids? Did he talk about those and other measures in dealinng with your symptoms?
We were waiting to see how the midodrine did before addressing the heart rate issues. He was using it as a diagnostic test to address whether or not the tachycardia issues were secondary to the adrenaline that comes with orthostatic intolerance, meaning that my heart rate only went up because of the adrenaline increase that occurs when i feel a black out spell coming on. It seems as if this is not the case so I will ask about the holter monitor.
I will post a question in the Chiari forum about that causing rapid heart rate, I had not heard of that. Thank you! I will also keep in mind the norephinephrine test as well.
I do have severe issues with headaches and I am only about 6 weeks post op from the decompression surgery for the Chiari, so I am very nervous about the Florinef. I will have to talk to my NS about that.
He did talk about increasing salt intake and drinking more fluids. At this point he did not talk about compression stockings or any other alternative methods.
I will talk to him again on Friday so we will see where he wants to proceed from here.
I believe I had a holter monitor test prior to a later referral to an electrophysiologist for a tilt table test myself. Orthostatic blood pressures had my internist pushing fluids via IV if I remember right.
Perhaps you have already discovered the need for a shower chair, not eating too large of meal or too sugary (or not getting up for a long while after), sitting on the edge of the bed for awhile before standing and perhaps even, after sleeping at night, drinking a glass of water before getting up?
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