I am a 21 y/o female and have little medical history other than the symptoms I am about to ask about.
Since I was 14 or so, I have been passing out on what can be quite a regular basis. I saw a paediatrician up until the age of 17 who ran tests such as EEGs, ECGs (as well as 24hr EEGs and ECGs), Tilt testing and an MRI. There has been nothing shown on any of these tests, however I have never had an 'episode' while having the tests either.
I developed an eating disorder (bulimia) in the year after this all started in response to the loss of control that I suffered as a result of these episodes and was treated by a great team.
I was referred to a neurologist about 4 years ago, who was given witness accounts and test results as well as the information regarding the eating disorder. Before he even saw me, he had replied to the referring Dr stating that he thought these were pseudoseizures, and that was one of the first things he actually said to me when he first met me. This diagnosis has remained, with the reckoning that once the eating disorder had been treated, the passing out should stop. He failed to recognise that the eating disorder was not part of the 'traumatic childhood' he assumes I had to develop an eating disorder, and therefore susceptible to psychogenic seizures. This has not been the case - I had a very happy childhood, am doing very well for myself now, and feel that there is definitely no problem with my mental health. As far as he is aware, these episodes occur without warning as that is what I told him, but I do recognise when they are going to occur now, and reckon I did then, but was living in denial due to my age and being in high school, etc.
On days that it happens, I often wake up feeling as though I am hungover, even though I rarely drink now, and will struggle to get up, and then have to sit in the shower rather than stand. Sometimes, this will not start when I wake up, but comes on throughout the day, usually leading to me passing out later in the evening.
About 30mins before I pass out, I lose the ability to hear properly, everything is more of a distant drone. People can be talking to me, but I don't hear what they are saying, it is more like a background noise, sometimes I am unable to hear at all. About 10-15mins later, my vision goes a bit grey and it can look like I am looking at a strip light or something as it seems to flicker a lot. This can even lead to vision loss at times, usually starting with my lateral vision. I get tingling in my hands, which can work its way up my arms, quite slowly though. I become very nauseous and can even vomit at times.
I will then fall unconscious to the floor. I am told that there are no convulsive movements, but that my eyes will roll, and there is usually very fast eyelid flickering. This lasts maybe 5-15 mins. When I come round, I will be very tired and still quite nauseous. More often than not, I will lose consciousness again for a few minutes.
After coming round, I usually have severe pain in the occipital region with photophobia and phonophobia, which I assume to be a migraine. Once the pain starts, I am unlikely to pass out again, and usually take to bed then anyway.
I have been diagnosed with migraines in the past, but they were classical migraines. I very rarely have a classical migraine now, but can have one of these 'episodes' and migraines as often as once or twice a week sometimes. The migraine can last for hours, and usually leaves me exhausted for the following couple of days, and usually have to resort to wearing glasses full-time rather than just for reading during these days.
I was hoping that someone can help, or tell me if they have had similar problems and whether they had an answer for this as it is looking as though it may affect my future as I may not be able to continue with further training until this is resolved. On top of that, I also have had some quite bad injuries, and have been lucky that other than scars, there will be no lasting damage. Does this sound like pseudoseizures to anyone else, or am I right to try to get the migraine thing looked at? I know I was silly to lie about my symptoms when I was younger, but there is nothing I can do about that now!
I have not had contact with the neurologist again, and he seems to be unwilling to review my case, and other neurologists feel it is inappropriate for them to get involved and tred on his toes. I am very unhappy as I do not believe that he has got this right, and nobody will help either confirm or prove wrong this diagnosis.
Thanks in advance!