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[Mytigodess]

In the past month, I had two status epilepticus events and one intense one in my sleep.

Seizures. convulsions, episodes, incidents or whatever you want to call it have been happening for 5+ years. I have been to several neurologists, most of the mindset that I have PNES after asking me if I ever have been diagnosed with depression or other psychiatric illnesses. Another told me I just need to sleep more. I think, and I could be wrong, the fact that I am a woman with psych issues, these men form an opinion before even examining me (and yes, that was what most of them have done; no exam and PNES diagnosed).

I am to the point if another doctor tells me I have PNES without tests, I will walk out. They might be neurologists, but they are not psychiatrist therefore should not be making such a diagnosis. I also find it condesending when it is refered to as an "episode". It would be different if they were to run tests before giving me that dreaded PNES diagnosis which means they are no longer interested in trying anything else. I want a doctor who is curious and enthusiastic about their job.

In the SE events, I was apparently going in and out of seizing and calming for 40 minutes the first time and 35 the second time. The one in my sleep even woke up my husband who can sleep through anything. I am bruised all over. My muscles feel like they are still on fire. There is no freaking way I am making these up for attention. One of the SE happened when I was home alone and when my husband and son got back I was on the floor battered and bruised.

I went to one hospital which kept me in for 2 days to make sure I would be okay when released. The second hospital did not seem to care too much about me, but more about the fact they were overcrowded. I can understand being overcrowded, but they wanted me to walk 35 steps to see if I was fine and I could not even take 1 step with a walker before falling down and they released me anyway; in spite of the fact they had me in the padding around the railings of the bed.

I also think there are many doctors who think only people who truly have epilepsy have real seizures and everyone else is PNES. I've been doing a bit of research before I've seen this forum. I've learned there are other reasons people have seizures which are not psychogenic including lupus, MS, drugs (including legal ones and allergic reactions to them), migraines, blood pressure being too high or too low, etc.

Does anyone relate to what I think or I'm I just nuts?

 

[masterjen]

Hi, and welcome to the forums
Have you by chance had an evaluation by a psychiatrist who specializes in PNES? That might be helpful toward refuting (or supporting) the diagnosis given to you by neurologists already. They ask questions etc. to determine if you do or do not fit the profile for PNES.

Also have you had MRI and EEG assessments yet? One can have epilepsy and normal MRIs and EEGs, but if one or both are abnormal they can go a long ways to providing a diagnosis.

 

[Mytigodess]

Thank you for the response.

I do see a psychologist and psychotherapist for issues with PTSD, depression, and depersonalization disorder. And yes, I know that brings up a high suspicion of pseudoseizures. My neurologist had them run an ADHD test and to get their opinion. Neither felt qualified to say whether or not they were real or pseudoseizures, but were confident I did not have ADHD.

I've had multiple EEGs, MRIs, X-rays, and CT scans which all came back normal (although I've never seen the test results, just going by what I was told). None of the seizures happened at a time when the EEG could say whether or not I had one. I will be getting a vEEG upon approval of my insurance.

If it of any use, I had my husband describe my SE condition:

I fell to the floor and hit my head against the tv stand. I was thrashing about with my limbs flailing wildly to the point of hitting things to the point of bruising followed by periods of what looked like tensing up and contorting like I was arching my back. My eyes were open the whole time, but seemed to be focused only on the ceiling. It continued on and off in periods of approx 30-60 seconds seizing with 30-60 seconds calming. When it was done, I was breathing really deep and heavily like I was sucking in air like my life depended on it. I slept deeply on and off for 3 days.

As for the one while sleeping, my husband said I was thrashing around quite a bit on and off. I eventually woke up not remembering anything but was panicked that I could not move the right side of my body. It felt like I was being weighed down by bricks. I couldn't turn over for the life of me.

 

[MaggieQuern]

I am very sorry about your experiences with the doctors. I feel like I hear that a lot from people. I too have even been told that. Even though they actually diagnosed me with epilepsy. When I've been in the hospital I've had seizures where the nurses saw and yet they would say that they were pseudoseizures. On the other hand, everyone is completely different. Triggers are different, treatments are different, as well as seizures. They are just classified into certain categories to determine which ones everyone is more prone to and how to treat it. I'm NOT saying that pseudoseizures are it's own category and that doctors should say that just because they don't want to do the work. Because I DO feel like they say that just so they don't have to do the work. At least some of them. I feel like my doctor does. He likes to put me on very high doses of antiseizure medication and then say, "I want you too go off cold turkey and come into the hospital when you have a grand mal." Which I find extremely unfair to me. If he wants to do that, then fine. But don't make me go home and be a ticking time bomb. Then after being on one medication for almost 3 years, he is now deciding to change my medications all together and do another EEG in July. I feel like I'm his personal lab mouse. Which isn't fair when you haven't agreed to a clinical trial. I'm not saying I am in a clinical trial, just that I feel like it and I'm the only person. Which I would honestly prefer to be in a clinical trial because they know what the next step is and keep you informed. My doctor just throws information at me and leaves without giving me a chance to even ask questions and even if he doesn't have a patient after me. Sorry, I got a little carried away there. I just wanted to say, no you're not the only one with a crazy doctor who seems like they don't listen to you.

 

[masterjen]

I hope the VEEG comes through for you soon, mytigodess. Having this done may be a big help.

 

[Mytigodess]

Wow Maggie. How exactly does your doctor expect you to get yourself to the hospital right after a grand mal? It is kind of conditional that a. someone is home and b. you are with it enough to tell your ride where to go.

 

[Mytigodess]

I hope the vEEG approval goes through soon. I want them to see what it is I have, even if I know there is also a good chance it won't happen at the right time.

 

[Bidwell]

The next time a doctor tells you you have psychogenic non epileptic seizures without doing any testing to back him/her up, I am very hopeful that you WILL walk out. In spirit I will be cheering you on every step of the way!

 

[katzy]

I'm sorry that you're going through this.Do you think you can get a referral to see an epileptologist?They won't be judgmental like the neurologists you saw. Also one except all of my EEGs were normal(I've had more than 10 done over the years) so normal EEGs don't mean anything.


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