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
I wonder if you’re having multiple issues?
There is a type of Epilepsy called Abdominal Epilepsy but it is very rare but of course that doesn’t mean you can’t have it. Do you have muscle jerks if so what time of the day do you have him also you mentioned fainting I believe is it actually syncope or is it an actual convulsive seizure Were you fall to the ground and begin to shake and jerk and are confused to afterwords and probably sleep. Also has anyone witnessed these attacks? When your neurologist put you on anticonvulsant medication I believe you said you were better but then they took you off and your problems increased. Can you tell us EXACTLY what symptoms became worse?
When someone is diagnosed with JME (juvenile myoclonic Epilepsy) The EEG tracing is occasionally normal. Just because a person has a normal EEG does not mean they don’t have JME Juvenile Myoclonic epilepsy or any other form of epilepsy. Have you figured out what any of your triggers may be? Do you know the reason your doctor took you off the medication? Was it because your EEG was normal? If that was the reason why my personal opinion is that he was very irresponsible in doing that especially since your condition worsened.
Have you been to more than one Neurologist? I believe seeing Endrochrononologist is an excellent idea.
Also since you have already had a regular EEG it might be a good idea to suggest to your doctor bet you have a sleep deprived EEG or an ambulatory EEG where are you are tested for multiple days so they can check when you’re awake and asleep. Also you can suggest being admitted to and epilepsy center. If you were near Rochester Minnesota Arizona or Florida they have excellent facilities to be diagnosed.
I wish you well and please keep us advised,
Jake

REPLY

@lpate – Welcome to Connect!
I can see from your description that you have a complex problem. Did you have CT or MRI of the brain?
The Endicrinologist should be able to check the Cortisol level. They usually do not only blood tests.
Was EKG normal?

REPLY

@lpate, I also welcome you to Mayo Clinic Connect. I noticed that you posted the same message in multiple groups. As an admin, I have the ability to post a single message in the multiple groups. This way everyone can help you in one common discussion thread no matter which group they see your message and you can follow one discussion instead of five.

I'm also interested in your responses to the questions that @astaingegerdm and @jakedduck1 have asked.

REPLY
@astaingegerdm

@lpate – Welcome to Connect!
I can see from your description that you have a complex problem. Did you have CT or MRI of the brain?
The Endicrinologist should be able to check the Cortisol level. They usually do not only blood tests.
Was EKG normal?

Jump to this post

Thank you for your response. Yes I have had multiple MRI/CT of both the brain and abdomen. Everything was normal. I additionally had a sleep deprived EEG which came back normal, as well.

REPLY
@jakedduck1

@ipate
I wonder if you’re having multiple issues?
There is a type of Epilepsy called Abdominal Epilepsy but it is very rare but of course that doesn’t mean you can’t have it. Do you have muscle jerks if so what time of the day do you have him also you mentioned fainting I believe is it actually syncope or is it an actual convulsive seizure Were you fall to the ground and begin to shake and jerk and are confused to afterwords and probably sleep. Also has anyone witnessed these attacks? When your neurologist put you on anticonvulsant medication I believe you said you were better but then they took you off and your problems increased. Can you tell us EXACTLY what symptoms became worse?
When someone is diagnosed with JME (juvenile myoclonic Epilepsy) The EEG tracing is occasionally normal. Just because a person has a normal EEG does not mean they don’t have JME Juvenile Myoclonic epilepsy or any other form of epilepsy. Have you figured out what any of your triggers may be? Do you know the reason your doctor took you off the medication? Was it because your EEG was normal? If that was the reason why my personal opinion is that he was very irresponsible in doing that especially since your condition worsened.
Have you been to more than one Neurologist? I believe seeing Endrochrononologist is an excellent idea.
Also since you have already had a regular EEG it might be a good idea to suggest to your doctor bet you have a sleep deprived EEG or an ambulatory EEG where are you are tested for multiple days so they can check when you’re awake and asleep. Also you can suggest being admitted to and epilepsy center. If you were near Rochester Minnesota Arizona or Florida they have excellent facilities to be diagnosed.
I wish you well and please keep us advised,
Jake

Jump to this post

Thank you so much for your response. In the beginning, when I would pass out I was usually around my friends and they claimed I would jerk for a very short time. Recently, my mom who is a nurse witnessed a spell and said when I dropped I was still and out for about 30 seconds. She, along with the other doctors I have seen agree it is not epilepsy and something else because of my descriptions. My neurologist put me on Lamictal to start. I began having more issues (excruciating headaches, worsened nausea, irritability) so he switched me to Keppra and then to Zonisamide. These issues got even worse to where I could barely function. I felt as if I was better prior to anticonvulsants. After a normal sleep deprived EEG and further work-up from another epilepsy specialist in Savannah, I was taken off my meds. I seemed to be better for a while, and then the issues have gradually gotten worse to where I vomit multiple times a day out of nowhere, feel faint, & can barely walk outside before feeling terrible.

REPLY
@colleenyoung

@lpate, I also welcome you to Mayo Clinic Connect. I noticed that you posted the same message in multiple groups. As an admin, I have the ability to post a single message in the multiple groups. This way everyone can help you in one common discussion thread no matter which group they see your message and you can follow one discussion instead of five.

I'm also interested in your responses to the questions that @astaingegerdm and @jakedduck1 have asked.

Jump to this post

Thank you so much!!

REPLY

Random question that might not have any relevance to my situation but I can’t help but ask others their opinions. I have read multiple blogs/reviews of the birth control, Tri Prevafim. Many people seem to have similar symptoms when on it. Could this cause such severe issues like I am reporting? In addition to an increased cortisol level of ~40?

REPLY

@lpate – I checked Tri Prevafim’s side effects – You are correct- many side effects match your symptoms. Also, if there is higher estrogen circulating, cortisol could be elevated.
The endocrinologist should know.
It is also important to have the heart and circulation checked- you are having an echo planned, correct?

REPLY
@astaingegerdm

@lpate – I checked Tri Prevafim’s side effects – You are correct- many side effects match your symptoms. Also, if there is higher estrogen circulating, cortisol could be elevated.
The endocrinologist should know.
It is also important to have the heart and circulation checked- you are having an echo planned, correct?

Jump to this post

You are correct. I have echo planned, an apt with the endocrinologist and neurologist.

REPLY

@Ipate
You made the following comment on your first post
“After seeing specialists and a normal EEG, I was taken off my meds which were causing me even more issues.”
I’m curious what symptoms became worse were they the headache nausea vomiting , abdominal pain, jerks or did you have new symptoms?
Jake

REPLY
@jakedduck1

@Ipate
You made the following comment on your first post
“After seeing specialists and a normal EEG, I was taken off my meds which were causing me even more issues.”
I’m curious what symptoms became worse were they the headache nausea vomiting , abdominal pain, jerks or did you have new symptoms?
Jake

Jump to this post

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.

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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.

REPLY
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