I’m still waiting for my insurance to authorize the AVS procedure, so no news on that front. But I thought I’d talk about what it’s like to live with PA. Everybody is different, which is why I think it’s important that all of us document our symptoms and make sure our doctors are aware of everything. So, here’s what I’m likely to experience in a typical day.
I wake up with a headache and a frozen trapezius muscle almost every morning. I take .5 mg of cyclobenzaprine and a hot shower for the trapezius problem, and usually a large cup of very strong coffee makes the headache go away. Sometimes I have to chase that with 800mg of ibuprofen, which I hate doing so I save it for desperation time. The exact cause of the headaches is not known, but the working theory is that at some point early in the morning I have blood pressure spikes caused by the excess aldosterone.
My diet is extremely limited. Unrelated to the PA, I am lactose- and fructose-intolerant, which, long story short, means I can’t eat fruit, processed or packaged foods, and many grains, so even if PA wasn’t in the equation, eating would be a pain. But thanks to the PA, I’m also insulin-resistant, which means I gain weight very, very easily. So I have to restrict what carbs I can technically eat – rice, beans, legumes – unless I want to gain weight, which is physically uncomfortable for me, and more significantly, very quickly makes the blood pressure go up. Also thanks to the PA, I can’t add salt to anything or eat anything already prepared with salt. And then add to that my own personal choice to not eat red meat, as I am wary of the hormones used in raising it – there’ s not a lot left. Let’s just say that I view eating as a chore and would really welcome the day when they invent the “food pill” 🙂
I retain water very, very easily. The last time I ate in a restaurant, even though I requested my food to be prepared without salt, I gained four pounds. This was right after the aldosterone suppression test, so that may have contributed to the water retention, but – it took me a month to drop those 4 pounds. It was a very uncomfortable month.
I don’t sweat. At all. I don’t fully understand why this happens, and it doesn’t happen to everyone with PA, but I’ve been told that the excess aldosterone makes you retain both salt and water. And, well, that’s sweat. I actually don’t mind this at all, and kind of dread what will happen once the PA is corrected. I know that the hypertension meds that I have taken in the past have all made me a hot sweaty mess, but then, they weren’t the right meds in the first place, so who knows what will happen.
I don’t like the cold. Most PA patients are intolerant to heat; I’m a bit of an anomaly here I guess, but when I’m cold my trapezius muscle freezes up. Again, nobody knows for certain what is causing this to happen; the current working theory is when my potassium drops below 4.2, muscle spasms happen. But being cold can trigger it too.
I get heart palpitations. This is also from the potassium dropping. It also happens when I take Vitamin D – my Vitamin D level is extremely low, but I can’t take supplements without triggering palpitations. None of my doctors seem to know what the connection is.
I’m tired a lot of the time. Not sleepy tired, just plain worn out tired. Dealing with all of the above can be, quite frankly, a royal pain in the ass. I know I’ve got it better than many PA patients – I don’t really let it get in the way of my life, except when it comes to food (and that is exhausting in itself!). But sometimes I don’t know what my limits are, and I’m learning that I need to set limits, because when I don’t, the symptoms start to multiply.
I get… confused sometimes. In the PA community this is referred to as “brain fog.” For me it’s not constant, but every now and then I just find myself checking out for a spell. I’m still not convinced this is PA-related so much as it is just general exhaustion-related. I also have a very hard time remembering dates, times, appointments, things like that, but again, I’m not sure whether to blame the PA or my own general spaciness when it comes to all things number-related.