Do I need a new doctor?

[Jockeyygirl]

I am 22 years old have been having spells since I was 6. They sound like partial complex seizures to my regular doctor obgyn and high risk pregnancy specialist. I am currently 6 months pregnant. These spells have been thought to be everything from ADHD to Schizoaffective disorder but SSRIs haven't helped and even caused problems with recurrent REM sleep behaviour disorder while on them. I was first medicated with 200mg of Ritalin at age 6 for ADHD. That lasted until I was 17. My mental health diagnosis has kept changing because my symptoms don't fit in a nice box. (They match Gershwind syndrome pretty well) My other mental symptoms started after they added Zoloft to the Ritalin because I was still forgetful in my teens which caused a suicide attempted which got a ball of meds cause symptoms let's add more meds and cause more symptoms rolling. I will zone out for a minute or two not responding to people or outside stimuli and have my eyes open often my pupils get big and I may rock back and forth or chew nothing. Afterwards for an hour or two normally I have hallucinations which involve hearing music and seeing lights but I know these are hallucinations. I am almost always tired after the spells. I constantly see visual snow and I am prone to migraines. I have no delusions or lack of self care. Sometimes after the spells have memory or speech problems as well as temporary emotional changes. I have no psychotic behaviors or suicidal/homicidal thoughts or feelings. I have been off medication for three years and worked two jobs until my pregnancy where my job riding thoroughbred race horses would not have been safe. I was referred to a vascular neurologist who has done one 20 min eeg. He said the eeg was normal and now wants me to go to inpatient mental health to start me on new meds because he thinks I have pregnancy induced depression which is causing conversion disorder which is manifesting as fake seizures which I he said I am giving myself I think he called them psychoginic seizures. I have never had a conversion or anxiety disorder diagnosis before in my life. Is one 20 min eeg enough to rule out me having seizures? Me, my family, my husband, and his family disagree with the diagnosis of depression and feel I do not need anti-depressants. Can anyone else relate or offer advice?

 

[Cint]

Hi Jockeygirl,

Sorry to hear you're having such a difficult time finding the right help. Unfortunately, that happens a lot with E. IMO, what you've described does sound like epilepsy with those hallucinations and migraines you experience:

I will zone out for a minute or two not responding to people or outside stimuli and have my eyes open often my pupils get big and I may rock back and forth or chew nothing. Afterwards for an hour or two normally I have hallucinations which involve hearing music and seeing lights but I know these are hallucinations. I am almost always tired after the spells. I constantly see visual snow and I am prone to migraines. I have no delusions or lack of self care. Sometimes after the spells have memory or speech problems as well as temporary emotional changes. I have no psychotic behaviors or suicidal/homicidal thoughts or feelings.

Read here for more info on types of seizures with hallucinations, and mood, personality changes:

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures

Sensory seizures:
~These cause changes in any one of the senses.
~People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness.
~Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space.
**They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.

Also more info:
http://www.epilepsy.com/learn/impac...and-behavior-101/mood-and-personality-changes

I have been off medication for three years and worked two jobs until my pregnancy where my job riding thoroughbred race horses would not have been safe. I was referred to a vascular neurologist who has done one 20 min eeg. He said the eeg was normal and now wants me to go to inpatient mental health to start me on new meds because he thinks I have pregnancy induced depression which is causing conversion disorder which is manifesting as fake seizures which I he said I am giving myself I think he called them psychoginic seizures. I have never had a conversion or anxiety disorder diagnosis before in my life. Is one 20 min eeg enough to rule out me having seizures? Me, my family, my husband, and his family disagree with the diagnosis of depression and feel I do not need anti-depressants. Can anyone else relate or offer advice?

Just because one EEG was normal does not mean you're experiencing psychogenic seizures. People with E often have normal EEGs, but still experience seizures, so sounds like HE needs to go to therapy and find out what goes on inside one's head! And NO, ONE 20 minute EEg is not enough to rule out seizures. You need an epileptologist, a dr. who specializes in seizure disorders, now, especially since you're pregnant.

And for females, hormones can and do play a HUGE role in seizures, so that is all the more reason you need a specialist, for your safety and the baby's safety.

When my seizures started years ago, they were catamenial seizures, meaning they were hormonal related, around "that time of month". Back then, that stupid dr. didn't want to believe me, but thru research over the years they finally started listening to women and realized it is true.

http://www.epilepsy.com/information/women/all-women/hormones-and-epilepsy

Is there a connection between seizures and hormones?
Yes, sex hormones can influence the excitability of nerve cells in the brain and thus influence seizure control. Estrogen can excite brain cells and can make seizures more likely to happen. In contrast, natural progesterone breaks down into a substance that can inhibit or prevent seizures in some women.

 

[Jockeyygirl]

Thanks for the advice I'll see if my high risk pregnancy specialist can refer me to another doctor.

 

[Bidwell]

Jockeygirl, Please, please find responsible medical help. If you can get to someplace like Johns Hopkins or The Mayo Clinic, do that. Otherwise I am sure you will find other excellent options through internet epilepsy sites and university medical schools. Everything Cint has written is important and please keep it firmly in mind so that you can keep yourself grounded when dealing with neurologists, some of whom are idiots and worse. My very best wishes.

 

[Dignan]

Listen to your gut. If you don't feel don't feel the diagnosis is right then definitely get another neuro. Not all neuros are the same. Some specialize in certain areas of neurology, which may not mean much when it comes to seizures.

If I didnt agree with the diagnosis, I certainly wouldnt let them put me on all sorts of psychotropic drugs. Once you get on that treadmill you will likely have other side effects and it will become more difficult to determine what is causing what. If those drugs end up being warranted then fine, but until you feel you have a diagnosis you are confident in I would be hesitant.

My experience is that docs who don't know what they are doing try to blame symptoms on the patient, when in actuality there is another explanation.

As others have said. please get another opinion, preferably from an epileptologist, which is a neuro who specializes in seizures.

 

[Matthew74]

The doc is wrong to conclude so quickly that you aren't having epileptic seizures. That's only your first EEG. Like the others said, lots of people with epilepsy have normal EEGs. Try to see an epileptologist who will look further into it. It might be something else but epilepsy has not been eliminated.