The Migraine Associated Vertigo Community
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What is wrong with me?

Trying to find some help, advice, suggestions, answers, or anything really in regards to the issues I’ve been experiencing over the last several years…

At this point I don’t know what is connected to what since there are so many symptoms going on and I can’t get answers as to why I’m experiencing any of them, so I’ll start from the beginning.
Winter 2016/2017 I had a small patch of hives suddenly appear on my knees and watched it spread over my entire body in real time, within an hour my entire body was covered in massive patches of red hives and my hands were on fire. I have no idea what triggered this, the ER doctor just threw a steroid and antihistamine scripts at me and told me I was allergic to a virus because of a cough I’d had the week before? I followed his directions and it cleared up in about a week. But I continued to feel weak and tired. About a week later I had my first visual migrane, I experienced a bright expanding circular visual distortion that started in the center and gradually grew to encompass my entire field of vision. it lasted about 30 minutes.
I was concerned about my health after these experiences, and seeing as how I was 300 lbs I started to change my eating habits and started exercising regularly. I found I was always exhausted and had to push myself to do just about anything. I started to experience a mild lightheaded feeling at times when moving around, doing housework, or having a shower. I started experiencing a sunburned sensation on various areas of my body that came and went and were painful when touched, but there was no redness or any sign of irritation. As well I started periodically getting severe restless legs before bed and my sleeping habits changed drastically. I started not being able to sleep past 6 am every day despite being able to sleep till noon at every opportunity just a year before.
I started a new job, but within 6 months the weakness and odd lightheaded sensations had increased to the point that I ended up leaving and trying to work with my doctor to find out what was going on. At this point I’d lost maybe 40 lbs. First I was told it could be anxiety, and over the next two years I had a mri which was negative, an ekg, countless blood tests and no answers. The sensations started getting more intense, I was having them nearly every day in clusters, some days the sensations were weak, and other times they were incredibly horrible. It starts with a floating bouncing sensation, my vision is distorted, almost hazy with a bright vibrating static like halo, sometimes I can continue to move sometimes my muscles tense and freeze, my legs cramping into a tip-toe position. I feel almost a rushing electrical sensation through my entire body, up through my legs, my back to my shoulders, ending in a throbbing whooshing feeling that moves up my neck, ends in the back and top of my head and behind my eyes. During particularly bad episodes I hear nothing while it’s happening, and i become incredibly confused both during and after for about 30-60 seconds. After it ends my heart is pounding hard and fast, I feel tired and my muscles feel like mild pins and needles which quickly fade.
My doctor tried blaming my symptoms on diabetes and or low blood sugar. as of 6 months ago my weight was down to 125 lbs, so I was accused of not eating properly, and was forced to take at home blood sugar monitoring for a week and to write a food diary, my blood sugar and eating habits were normal. She’d ran out of ideas and so referred me to get a colonoscopy, and so I’m now between health care providers.
My sunburned sensations have progressed to numb and tingling sensations, on my thighs, buttocks, scalp, and oddly enough across my face during meals? My restless legs still come and go, and I’ve started getting random jerking of my legs arms and neck.

Hi Laura, sorry to hear of your suffering and welcome to the board.

We can’t diagnose here. As you will see from the Welcome Topic, we focus on people with chronic vestibular conditions. It does seem your case seems to be evolving into that.

If I were you I’d keep pushing to get answers with your health care provider and get additional, professional opinions as required.

Please let us know how you get on.