Headaches

Headaches that never go away. never, they hang on all day every day. I use to think it was allergies, or sinus problems but now I know that most of them are from the Hashimoto's Encephalopathy. My brain will feel swollen, like there is too much pressure in my skull. Sometimes I have to just close my eyes and sit in a dark room lights from the tv or computer screen are too much. Or there maybe a sharp jolt of electricity type pain shooting in my skull, brief but alarming just the same. I asked in my facebook group of friends with the same disease for which there is forty of us in one place (total of patients dx with HE is supposedly around 200) in the world, so we represent a good percentage of patients in one spot the majority of them have the everyday headaches also. So I know I am not alone, but still sometimes it does get bad, and does affect what I can or can not do. It has become the norm to just always have one and just keep moving because if you sit down it feels worst because I am thinking of it. Or I will get a numbness in the back of my head, it feels like it fell asleep and will be like that for days, which is unnerving also.

Another thing I  have asked in  my H.E. group is the seizures. I wanted to know how many of us out of the forty have had them and if they were after other symptoms showed up or was that the first thing to happen. Were they the typical type or not typical. I find it interesting that many of us had non typical seizure's after we were having alot of symptoms a while before we were dx. A few had full blown seizures that helped with the dx of the disease. A few of us were in comas,. and hospitalized sometime during the H.E. diagnoses. Only one of us out of the forty have been in a remission without a flare for over six years. How wonderful for her. She had over thirty treatments of plasma exchange. She still has the residue H.E. problems that seem to hang on to all. Short term memory problems, fatigue, concentration problems, balance issues to name a few. Most of us do not work, can not work. With speech issues, memory, concentration, balance issues, fatigue, would you hire us?

Another thing I have taken interest in with our group is that we all seem to have had  type A personalty's. This I find is interesting too. Maybe only one or two say they were not. I know for myself this is the hardest part to accept. Not being able to be that A personality anymore. No more Susie homemaker that is for sure.

Well enough for now, the head is pounding.