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Knellie

Dysautonomia and Chronic Migraines - anyone relate???

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     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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Welcome to the forum.

Headaches can be a part of dysautonomia.  I get episodes of headache that can last for days, but not an aura, or anything that suggests migraine.  I've been told they are tension headaches.

You can search for "migraine" on the forum to find past discussions.

There have been a lot of past discussions on this topic.

Here are a couple that may be helpful:

https://www.dinet.org/forums/topic/27750-occipital-neuralgia-vs-migraine

https://www.dinet.org/forums/topic/25786-horrible-migraine

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