I'm Marley and new here

[Marley F]

Hello my name is Marley and I have had seizures since I was 8 years old now I am 20. I was diagnosed with Psychogenic Non-Epileptic Seizures but now I am going to another doctor who says he thinks I have Subcortical Complex Partial Seizures. When I have these seizures I am not aware of them a lot and I am totally unresponsive. I have tried almost every therapy and loads of psychiatric medications to try to help with Psychogenic Seizures but nothing helped. I had a seizure and fell and suffered a Traumatic Brain Injury in March of 2015 then I fell again from another seizure and suffered another Traumatic Brain Injury in February 2016. My seizures got a lot more violent from the Traumatic Brain Injury from the Traumatic Brain Injury I suffered in March. Almost every time I have a seizure I get a concussion even if I don't hit my head. I lost some of my hearing from my Traumatic Brain Injury then I had another seizure that caused even more hearing loss. I already have vision issues but from my Brain Injury it caused me even more vision loss. I have Autism and Fetal Alcohol Syndrome and Tourette Syndrome. I want to make friends and try to help others.

 

[acshuman]

! ! ! ! Welcome to CWE ! ! ! !

Marley,

There are many members of CWE who have years of experience w/E. This means that you can ask any questions you may have.
If you want to help people, CWE is always a place you can do that! :clap:

acshuman

 

[Porkette]

Hi Marley,

Welcome to CWE! Just like you I have complex partial seizure along with absence seizures. Years ago when I was a kid they thought I was faking my seizures calling them pseudo seizures but after detailed testing they found I had damage deep in my brain that an e.e.g. didn't pick up. You may want to look into seeing an Epileptologist if you aren't seeing one yet. I have found they know how to treat epilepsy the best and have me on the least amount of meds. I was also able to have surgery done to reduce my seizures.
Everyone here has been a great help to me and I've learned a lot even though I've had E. for 44 yrs. Here's wishing you only the best and May God Bless You!

Sue

 

[Frink]

Hi Marley,
Welcome to CWE.

 

[Marley F]

Porkette It is hard when no one really wants to help you because they think you are faking the seizures. How did they find out that you had seizures if they did not show up in the EEG? Mine don't show up in the EEG either so they want me to get another type of EEG. I have had the normal type of EEG where it just is 30 minutes are so I also supposed to have a 24 hour VEEG but it only lasted 10 hours because when I had the seizure they did not see anything so they released me from the hospital. I can't really be alone because I don't know when my seizures are coming and I don't hurt myself very bad. Now they want me to get another type of EEG and then go get a SPET scan.

 

[Frink]

Having a seizure not show up on an EEG does not rule out epilepsy, the EEG is an inclusive test, not an exclusive test, meaning it is used to prove seizures existence not to exclude/disprove them.

Symptomatology is still a standard method for epilepsy diagnosis.

Seizures originating from deep in the brain may not be picked up by normal external grid EEG's, sometimes internal grids must be implanted onto/into the brain to fully map seizure activity.

 

[Marley F]

Frink Thank you! When I have my seizures my blood pressure lowers 80 over 60 or something like that. I also old my breath and then my blood oxygen goes down very low. Some times my blood sugar spicks and then lowers too low where they had to give me something in my IV to bring it back up. My heart has the same problem it lowers. I don't know if people with Psychogenic Seizures have this problem but now they say no. They say I have Grand Mal seizures what ever that is.

 

[Frink]

I have TLE and while it is more common for the heart rate to go up when you have a TLE seizure, mine goes down, and so does my blood pressure, leading to me losing consciousness and hitting the floor.

 

[Marley F]

Same here I am totally unresponsive. My parents have told my they have done the sternal rub on me and smelling salts to try to get me out of the seizure and it does not work. I don't remember it happening but when they do smelling salts it cause me a bloody noise I guess because they do it too long. I have gotten staples 4 times and got stiches one time and when I got my staples from my Traumatic Brain Injury it still hurts so bad where I can't even touch it. Do you have this experience or do your scare not hurt you anymore?

 

[Frink]

I have been very lucky not to get any lacerations, just many concussions, bruises, strains and badly bruised muscles from falling on things.

Been doing physical therapy for 2 years for injuries to my back, shoulders, elbows and wrists.

 

[Marley F]

oh okay I am sorry for that I am here for you. I am in a wheelchair if I ever go out because I don't know when my seizures are coming and almost every time I have a seizure I get a concussion even if I don't hit my head.

 

[Frink]

Actually I am doing pretty well, I have not had to use my cane in almost 2 years. The injuries are mostly muscle problems and some nerve damage.

Much better than in years past.

 

[Topcat]

Welcome. There are some great people here (hey I'm one of them).
Since we have been (and still are) going through a lot of what you are, maybe we can help you cope (as the name says).

 

[StrongerThanEpilepsy]

Welcome!

It's good that you're seeing another doctor for a second opinion. Sometimes, it seems that doctors find it easier to slap someone with a psychogenic label when a non-diagnostic (just helps in a diagnosis but doesn't prove or disprove anything) test comes back normal instead of deeply looking into the issue. I had only one normal EEG and MRI once and got dismissed from a NP as psychogenic. I have personally found it harder after that with any doctors because that's in my permanent medical file and that isn't going anywhere and it creates a bias. Seeing a serious epileptologist really does help. (And yay! We're the same age haha.)

 

[Porkette]

Hi Marley,

My neuro did a video e.e.g. on me but they did surgery and put the electrodes directly on my brain. Then they gave me diet soda to drink along with cutting me back on my seizure meds this in turn triggered seizures for me and it was on camera and the electrode that were on my brain showed the area of my brain triggering seizure. I also had a Spect scan and Pet scan along with a FMRI. I wish you the best of luck and May God Bless You!

Sue

 

[Marley F]

Thanks for answering! It is very hard not knowing. I can't see very well and can't hear much so one of my triggers is children's noises. I feel the vibration though my feet and that causes me to go into a seizure. The doctor says it is like how some people have the sensitivity to light and it triggers the seizure but mine has to do with certain vibrations. Now that you have mentioned the fMIR I think they want me to get that too. I had a CT scan when I had my Traumatic Brain Injury and a MRI but not a fMRI. Because I was diagnosed with Psychogenetic Seizures my health care never wanted my parents to call 911 even if I did hit my head and was bleeding and all of that. They did not even give me a helmet for my seizures because my health care said it was not medically necessary. Now we are paying out of pocket to see this doctor 2 hours away from were we live who specializes in people who were adopted from Russian orphanages and have Fetal Alcohol Syndrome. This doctor says if I don't get these seizures under control I could die from them because I am already getting dementia from it and I could go into a Status seizure.

 

[Nakamova]

Hi MarleyF, welcome to CWE!

It's terrible that it took so long to recognize that your seizures were epileptic. I hope your current epilepsy doc will help you get better seizure control.

 

[resaebiunne]

Sorry to hear about your troubles, Marley. Unfortunately it seems to be common that people of a young age don't get properly diagnosed, not just in the case of epilepsy but also mental conditions. It's a lesson to be learned especially when you are on your own to seek treatment. I'm not sure what role your family plays in getting help. The best thing you can do for yourself is to find a doctor who is willing to take the time and listen to you. I would suggest finding a good epileptologist who specializes in the treatment of epilepsy. It would also be helpful to find a psychiatrist or neuropsychiatrist who can work with the epileptologist to make sure you don't have any latent mental issues. It's not just the quality of the doctor you are seeing, but the support system they have in place (other doctors, such as neuropsychologists) who are trained to diagnose mental disorders. The prefix neuro- means that these doctors are trained to deal with neurological issues, not just mental illness.

Anyway, welcome. I hope you find the help you need.

 

[Marley F]

I know so much about medical stuff because that is where my interest is. I knew that a lot of people with Psychogenic seizures usually don't stop breathing when they have there seizures and don't have them at such a young age. I also don't think they get medical problems from it like hearing loss and all of that, we know that my hearing loss is medical not mental. From the convulsing something in my ear as moved so now I can't hear real well at all. I think people with lesions in their brains get epilepsy at times. I have good support from my parents but only them. It is very hard on them because on of them has to be with me all the time so my mom had to stop work and I honestly don't think she is happy anymore. These medical bills are so high. I just wish I could make life better for them. They saved my life my getting me out of the Russian orphanage but now I feel bad for getting all of these issues.