Searching for a diagnosis post epilepsy

Prior to anti convulsant meds, my biggest complaint was the headaches. Nothing I took (NSAIDS, Tylenol, triptans, gabapentin) worked at all. My neurologist was most concerned about the spells of passing out and what we thought was seizing and put me on lamictal. The headaches became unbearable once on it. He then switched me to Keppra in which I had the same issue and then to Zonisamide which was ultimately the worst yet. In addition to the debilitating headaches, I had severe ongoing abdominal pain, slept for hours at end, and was so irritable to where I did not feel like myself at all. I felt like I was better prior to starting the meds. I questioned the diagnosis and felt it was time for a 2nd opinion and saw an epilepsy specialist. She agreed that the diagnosis of epilepsy seemed questionable. I then had a sleep deprived EEG which proved normal. After much thought and contemplating with the dr, I withdrew from my meds (which was Zonisamide at the time). For a bit of time after, I felt like a new person and actually like myself again. However, it seems as if the problems arose again last summer and have progressively gotten worse. I still have headaches, but not to the degree as on seizure meds and abdominal pain at times. My biggest problem now is the nausea/vomiting multiple times a day and frequent syncope. I can barely walk outside without almost passing out. Just yesterday, I was pumping gas and nearly fainted in the parking lot. I can’t eat without puking. I have additionally experienced GI issues including diarrhea. It seems as if my symptoms are so wide-ranged that doctors don’t know what direction to point me in.

I have researched and researched for hours upon hours. Does anyone have experience or know anything about POTS or NET? These conditions seem to present similar to my case.

@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

@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!