Searching for a diagnosis post epilepsy

Posted by lpate @lpate, Jul 26, 2020

I am an 18 year old female with a 2 year history of passing out randomly, severe headaches, nausea/vomiting and abdominal pain. I currently take Lexapro and Tri Prevafim. In the beginning, my neurologist diagnosed me with Juvenile Myoclonic Epilepsy and put me on meds. After seeing specialists and a normal EEG, I was taken off my meds which were causing me even more issues. Since, I have seen dr. after dr. trying to determine a diagnosis. Lately, it seems that the nausea/vomiting occurs multiple times daily, and the syncope spells occur all too often. Just recently, I was up all night with excruciating abdominal pain. I can barely do small tasks without feeling faint. This past week, my family practice doctor did a full blood work up on me to test for autoimmune, endocrine, celiac and other issues. Everything came back normal except cortisol which was ~ 40. My doctor agreed it was strange and that I do not fit Cushing’s clinically (very thin, lower b.p.). She has agreed to refer me for an echo and to the endocrinologist for further examination. I feel lost because each test/scan/lab shows nothing. MRI/CTs have all been clear. I just don’t know where to go from here. There are so many areas that could be affected-neuro, endocrine, cardio, etc.

@ipate
Your normal EEG doesn’t necessarily mean there isn’t abnormal electrical activity in your brain it simply means that during the recording you didn’t have any seizures.
If I remember correctly you mentioned fainting, when this happens do you just fall to the ground quickly or can you control the fall? Do you have anxiety issues? Any incontinence, muscle spasms, jerking, any muscle involvement of any kind or just sort of laying there like a ragdoll?
After these episodes are you ever sleepy, have you ever bitten your tongue, have your muscles ever been sore or have you experienced any confusion afterwards Obviously your physicians know best however sometimes they do miss things and don’t consider all possibilities. While I was taking care of my dad he ran into that problem and also had postural hypotension. After we got him up his blood pressure would think and we put him to bed here we go skyhigh, I don’t remember what his heart rate was when he was passing out. I’m not trying to convince you that your problem is seizure related or that it’s not only that there could be more than one issue going on which does complicate things.
Depakote or Topamax might be options if you supect any seizure activity. They are both broad-spectrum anticonvulsants and help absence, Focal and tonic clonic seizures. They are also used to help people with headaches. Most seizure related side effects ease or go away within three months.
Take care,
Jake

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@lpate – Me again! I think you will have more answers after your cardiac echo , seeing the endocrinologist and neurologist.
Migraines is another thought- they can be vicious and can also appear as abdominal migraine.
Looking forward to hearing from you after all the testing and visits. Don’t lose hope!

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