Devastated!
My migraines now are daily and the trigger (or the trigger I recognize) is the sun or any bright light. My migraines when I was younger were so intense, I literally just wanted to die. The sound of my own breath was like a freight train on my head. Now, they're not as intense (though super painful) but they're daily. Literally, it's rare that I don't feel some kind of pain on a daily basis, sometimes non-stop for days especially if it's sunny out. There are times I wear a visor in the house b/c of the glare. Top that with my chronic conjunctivitis and it's gotten to the point that I just do not go out during the daytime or have to take rests in between using computers or watching TV (which I rarely do).
I get the auras but also now I get this weird eye kind of "eye stiffness", if you will, which doesn't allow me to read. I have to move my head to read. I don't really understand what I do, as this happens instinctively, but I can't read like a normal person when I am having a severe attack (and sometimes even a mild one).
This is DAILY. I am sick of it, sick of being sick. It's so frustrating and depressing. Sometimes I just break down and cry.
I have a lot of other issues, A LOT. I truly believe my problem is a systemic autoimmune disease and from blood work results, apparently I might have RA (and most likely Sjögren's) I have had thyroid disease most of my life... and some of my symptoms per my primary care sound like vasculitis, a comorbid and/or product disease of RA... so yeah. Also have been diagnosed with coronary artery disease which is why vasculitis is possible. I'm just naming a few of my symptoms.
Right now, aside from migraine (which today is not that bad) I have hot spots on my body. Tissue is inflamed on my arms, red and feel hot to the touch and hot to me inside as well. I could sit here ALL day and talk about my crazy symptoms and how no one has nailed my condition. Some doctors ignore you, some think you're exaggerating, some think you're neurotic... I'm not making this up. It shows up on my blood tests (always bad results) and you can actually SEE my symptoms. I don't get why some doctors study medicine.
I am convinced that most symptoms are from one source. I wouldn't even call diseases comorbid as if they existed in parallel universes... if you have a systemic disease, this shuts down your body, but what is the source? I refuse to take medication for symptoms. You have to target the source but for that you have to know what the source is. If you don't target the source, you'll be taking medication for migraine, medication for RA, medication for vasculitis, medication for heart disease, and so on... when in reality RA produces vasculitis which in turn gives you cholesterol which in turn gives you heart disease... this is just my best supposition of course and I'm not a doctor. But I know that thyroid causes cholesterol too and if you take statins, your thyroid med doesn't work b/c statins block effect, so see WHY it's so important to target a cause.
I stopped taking statins and my cholesterol continued low (though it's a bit higher now but not even close to what it was even when I was vegan but had not been diagnosed with thyroid disease and therefore not taking the meds) and this was b/c finally the thyroid med could do its job. People don't get that some meds zero other meds out... this is my main reason for determining what is the source of the illness b/c once you attack the source, the rest should follow suit.
Doctors need to understand that no one wants to go through life taking a million meds for some of them to give you bad side effects and then not even work for what they're meant to work b/c you're taking something else that stops it from working. They also need to listen and TIE loose ends... things don't just happen. Tying loose ends is the purpose of medicine.
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