Hi everyone,
How amazing that this forum exists! I’m new here and I’m just figuring out how all of it works, perusing the different topics etc. Thought I’d introduce myself to start with.
My name is Jane, I’m 31, I have the sweetest husband and a 4 yo son who is the joy of my life. I’m really into everything creative, from singing, to drawing, to crocheting, you name it. I used to be really active and do yoga and surf, play in musicals and sing in a band, start all kinds of crazy projects, but not so much anymore, since for the past 10 years my health has slowly been declining.
And that’s how I ended up here! I’d love it if you’d read my story and let me know what you think!
After going back to my GP countless times and doing all different kinds of physio, I was finally diagnosed with POTS (and ME, but I’m not sure about that, since I don’t really experience PEM or muscle weakness/acidosis) at the beginning of this year. A Dr. here in the Netherlands does tilttable tests using ultrasound on the carotid and vertebral arteries, measuring the bloodflow and it turned out that, when upright, the bloodflow in those arteries was cut in half, despite my heartrate rising with 30 to 40 bpm.
POTS is my most debilitating symptom, it makes me wired-but-tired all the time and unable to fall asleep at night when I overdid it, resulting in a vicious cycle. I can’t work, do anything in the household or play sports anymore because of it and I am so sensitive to any kind of stress, it even affects my relationships.
But I’ve also been dealing with brain fog, concentration issues and cognitive decline, tinnitus, headaches, headpressure when lying down and painful globus/choking sensations preventing me from having good posture.
And also some other really weird things: excessive saliva, eye twitching when rotating my head, trouble eating thicker foods and drinking, like it just stays in my esophagus for longer, trouble with voice control when speaking or singing loud, not able to speak and sing for as long as before, toothaches from chewing too much or too hard, like a carrot, and sensitive teeth in general.
I’ve had physical therapy for the headaches and the globus, but it never got better and I just assumed it was psychosomatic, since that’s what I was told. I’ve adjusted everything in my life according to these symptoms, I’ve gotten pretty good at accepting my body for what it is, without knowing why, a skill I am grateful for, but ever since my diagnosis I’ve been digging deeper into possible mechanical causes.
The Dr. who diagnosed me said that to have a chance at stabilising and not getting worse I’d have to be horizontal as much as I could, preventing my heartrate from rising. So I did that… And my headaches suddenly became much worse. I figured out that they’d happen most when lying on my back, because I’d be trying to look down and that movement causes a stinging in my throat, like someone is pinching it from the inside, that shoots up around the back of my ears, along the side of my nose and around my eye. I started looking into neck issues as an explanation for my POTS, remembered a head injury in 2016 and had xrays taken to check for any missed damage. Nothing worth noting according to the doctors, but I did notice I have a reversed cervical curve, which I think in my case is a pretty significant finding. I’ve started doing exercises to bring some lordosis back to it, which is quite hard, because of the choking, stinging sensations/headaches.
The orthopedic Dr. I’m going to now wants to do an mri, to make sure it’s nothing orthopedic, before referring me anywhere else, so I’m doing that at the end of the month, but I have a well-meaning GP who has already said she’d give me a referal to an ENT after this, so I’m hoping for that to be a quick straightforward process giving me the answers I need about whether this is caused by my styloid processes…
I’m so overwhelmed by all this, my diagosis only gave me more questions. My biggest question right now is, if it’s not eagles, what else could it be?
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