I tend to think I’m a bit old fashioned in many ways but having PoTs makes me modern it seems. It was identified by Schondorf and Low and named as POTS – Postural Orthostatic Tachycardia Syndrome in 1993, so not that long ago in medical history terms. I assume these gentlemen made the dx criteria of heartrate increase from lying down to standing of more than 30 beats per minute within 10 minutes of standing or hitting more than 120 beats per minute (for adults).
While many Potsies do have neurally mediated hypotension with this (NMH) where their blood pressure plummets with being upright, that is by no means the only Potsie flavour out there. Those of us with sudden hypertension or (like me) sudden massive BP spikes followed by equally massive falls are not as uncommon as might first appear.
Migraine; apparently this is a fairly common symptom with dysautonomias. I’ve had them one and off for years. As a child and teen they were utterly horrendous and very difficult to control. I ended up on some long term meds for about three years until finally they seem to go away. Then I would have one now and then. I would have an aura sometimes and soon learned that if I took enough meds once the aura started I could get away with a bad headache, but if I waited for the full on pain- nothing much helped. My more recent migraines have been kinder in that I have always had an aura. Lucky me! For those of you who don’t know- or maybe have an aura and haven’t recognised it, mine is like this; I get black dots and a sort of grey purple fog in front of my eyes. This is sometimes followed with the tunnel vision thing with white worms (sort of worms). As the tunnel vision gets worse and the black dots get thicker on comes the pain. If I get some migreleve pink before the worms I’m usually ok. I think that kind of aura is fairly common. Some people get a metallic smell or taste as well. I rarely get that.
This time however I had no aura and I was floored. Amitrip has been a great help keeping migraines at bay, but if I get one I take two pink Migraleve four hourly leaving four hours between the last pink to taking the night time amitrip. Now, that’s what I do but be warned – this is important – Migraleve and amitrip are contraindicated. That is you are not supposed to take them together as it can have some serious side effects. PLEASE , if you are in the same boat as me, be cautious. Most of us with these ‘orrid diseases have some drug sensitivities and I don’t want to cause problems for people.
If my GP knew what I get up to when he isn’t looking…!
I am still waiting for the results of the 24hr ECG and a new appt with the Cardiologist. Sadly I think I’ll need to be well enough to fight for results and stuff. I was warned when they unwired me. Ah well. I’ll give it another week and see.
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