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Posts posted by Knellie

  1.      In August 2018, I started getting headaches pretty often. I was a little concerned but didn't think much of it. These headaches soon progressed into every afternoon, and then everyday all day. These headaches started shortly after I had gotten glasses, so we got my eyes checked several times, and every time the doctor would just say, "Kids get migraines!". I was frustrated, so I took a different approach, which was going to an ENT doctor. I had developed symptoms of chronic dizziness and I was always tired, my feet were always purple and cold, and I was always sweating for no reason. and so the doctor ordered an MRI to check for tumors, sinus problems, and inner ear problems. My MRI came back normal, and then I was really puzzled. We went to my PCP who referred me to a pediatric neurologist. It was there I got diagnosed with Chronic Migraines. She didn't give me any medications, but just told me to drink more water and eat more salt. I tried that for months, drinking 144 oz of water everyday and putting salt on every meal, but there was no effect. I had a follow up with her and they just told me the same thing. We mentioned our concerns about me maybe having POTS, so I was referred to the pediatric cardiologist at that hospital. He said that I had the postural orthostatic part, but not the tachycardia part when I stood up. But I do usually have a resting heart rate between 85- 110. He also told me to drink more water and eat more salt and then referred me to a pediatric physical therapist to help me exercise again. Although I have answers to why I am dizzy and have cold, purple feet, something tells me that chronic migraines may not be the correct diagnosis. I don't have light sensitivity or sound sensitivity. I have had three "migraine attacks" where I get an aura and can't read, but that was only a couple of times. I really don't know what to do. I have been on amitriptyline and propranolol, which didn't help anything so I stopped using them. I am thinking of getting my intracranial pressure checked, to see if it is a headache of that sort. My vision started going down hill around the time my headaches started, and I just had to get a higher prescription this year. Pain killers worked for my headaches in the beginning, but now they don't help at all. My physical therapy makes my headaches a million times worse as well. I am really confused and don't know what to do. Has anyone had a similar experience? I don't know if my headaches are related to the dysautonomia.

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