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Old 12-14-2012, 12:27 PM   #1
Join Date: Dec 2012
Location: Pennsylvania, USA
Posts: 5
PennGuy HB User
New to this board and have a seizure question

Hello everyone, this is my first post on this website. I have been having some issues for almost 1.5 years now. I have seen numerous Drs (my family Dr, a neurologist, a GI guy, and a heart specialist and now a sleep specialist). I am not holding my breath about the sleep specialist other then he was first Dr who really listen to my whole story and seemed interested in putting the puzzle into some order.

Anyway, to explain my situation it started in the summer if 2011 with no apparent trigger. I started to have serious digestive issues and constant chest pain. My family PC ran some tests and found that I had high Bilirubin but after a full liver and Gallbladder check just called it Gilberts syndrome (chronically elevated Bilirubin...of course it was never elevated before but that is another story). He also found some odd anitbodies on some blood tests and worked me up for Autoimmune which all check out fine. I had an EGD done in my stomach which found atrophic gastritis and a slow emptying stomach.

About a month after all this started I started having extreme brain fog and had extreme sensitivity to light. I really hated synthetic light and I had what was called the first migraine of my life. I was disoriented and could not concentrate and got a severe headache and could not tolerate any light. Now I will tell you, I have not had more than 5 headache in my life prior to this time. For two months I could not function with constant headaches and extreme light sensitivity especially to flashing lights. I also could not tolerate too much information in general. I am a scientist myself by trade and I used to doing ten things at once, but with this just watching too many cars on the highway buzz by would throw me into a fit. I was sleeping very poorly at this time with tingling pains all over, low BP, and simply for unknown reasons could not stay asleep for more than 45mins at a stretch. I was sent to a Neurologist who did an EEG, and some balance testing as well as an MRI and MRA and CT. All were fine, with the only noted item being two mucous retention cysts in my sinuses (Which were also giving me fits). Nothing with the Brain, no lesions, no abnormal waves, no tumors, no broken blood vessels. He told me to start taking Magnesium supplements (as I tested low in Mag once) and basically return in 6 months.

I also saw a heart doc due to my chronically low BP and exercise intolerance. There is a family history of dysautomia with my mom and sister have neuromediated syncope, a cousin with POTS and myself having passed out more than 10 times in my life.

To shorten the story, I am here today much better than last year. I am exercising everyday and doing much of what I did before this started. Most of issues have subsided to become only minor annoyances. However, the issue that I still have is this daily brain fog, sensitivity to light and disorientation. It is better, but if I drive where there is a lot of light coming through the trees for example and it is continuous for awhile it really gets to me. My head feels like pressure is building and I get disoriented (not really dizzy). I have not had any seizures to this point and I have always remember the episode very clearly.

I guess I am still a upset about what is going on. At this point I tell myself to just keep pushing and if I have a full blown seizure or something at least I would have an answer. Does anyone on here have any experience with this type of aura before a seizure and do they get them everyday? I know this is an epilepsy board but does anyone here have any experience with light sensitivity issues from Sinus problems? My family Dr says it is not possible, but I have heard others say differently.

Sorry for the really long first post. I hope everyone has a great holiday season and finds answers to whatever ails them.


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