A few years ago I started getting pain in one eye and people kept commenting on my left eye always having a red line it on some days. After a while I really didn't feel right but couldn't explain it to anyone at all, even now I can't really put my finger on it. I felt like my thighs were electric, the backs of my knees hurt and all over I generally had this feeling of that horrible sensation you get when one of your limbs is waking up from pins and needles but only very slightly, accompanied by a very fine pain all over, like someone was playing the violin on my bones so hard to explain.
I Went and had blood tests etc and I was apparently fine for everything, had low vitamin D and was given supplements, reacted very badly to that and got over that when I came off them. I still felt awful generally. Need to note I've never been a stressful person by any means, was given amitriptyline etc to see if it helped just in case but nothing did. I was feeling awful 24/7 for almost 2 years with only a few days a month I felt well again.
I was screened for everything, ms, HIV, heart issues etc etc and everything was fine, this was seeing top consultants in London. Then one day I woke up and one eyelid was swollen, my vision was tested prior to that and was perfect 20/20. Decided to see a neuro, he told me that from what I'd said he thought it was migraines, the relief instantly made me feel better I admit. He put on topamax and over night I was perfect again, felt back to normal. Was so relieved!
Now a year later I was getting eye pain, I panicked and started on topamax again (was only on it for 2 months initially), it didn't work quickly enough for me so I stupidly ramped the dose up too quickly, ended up feeling exactly as I had at my worst point, aching muscles, nausea, weakness etc. My eyes became very dry (had no side effects on topamax the first time) and irritated, I read about glaucoma and was seen by a specialist the next day, he looked and pressure tests Etc and said there was inflammation and dryness, I stopped the topamax and the eye drops got the inflammation down over the next week. However ever since then I've felt the same as I did when this all first started. Wake up feeling brain fog, eyes feel dreamy, redness in both eyes as attached, muscle aches, feels like someone is pinching the back of legs in places when I walk. Always worse of morning, I had a couple of weeks before Xmas where I felt normal again and thought I was through the woods, yet over Xmas it started again and I'm now on about day 7 of feeling awful.
Beginning to wonder if it actually is migraines, but then it disappeared for a year instantly on the topamax, and then the topamax has made me feel just as bad again over a year later?!
I've literally no idea where to turn, I had a lot of stress in the year where I was 'cured' and didn't feel like this once so can't see how it could be that. Seems the topamax reset me to being ill. I don't know where to turn, the attached picture was taken today but it's now in both eyes on the inside, gets better and worse throughout the day. Please help?