I'm a new Non-Epileptic Seizure Person

[mclicky]

I know that everyone says that they are frustrated and don't know where to turn to when something like this happens, and I can completely agree. I'm LOST!
I was in a automobile accident on January 9, 2008. T-Boned my car...the other person's fault. No broken bones, but alot of serious soft tissue damage. Which has turned into Fibromyagia, Bruscitits, and Chronic Pain Syndrome. Then starting this past January, I started having problems with my eyes. Anytime I'd go near florescent lighting, I'd actually go blind. My eyes would flutter and finally shut completely, only opening when I was in the sunlight for a while.

About three months ago, I ended up with my first seizure. Nasty! As they have been increasing in duration and getting closer togeather, we went to my doctor. I was hospitalized....all they did was watch me! Everyday I had a seizure. Some when I just woke up! No stress...nothing!

Now, I have between 1-5 every day. They last in duration from 5 mintues to 45 minutes. I have full body seizures and it is so very exhausting! My mom puts icy cold cloths on my head as I produce so much heat that you can feel it permiating off of me. She can change the cold cloths every couple of minutes, and I still am hot! Then when the seizures subside, I get very cold! Two or three blankets and I'm still shaking.

I don't blank out, but am conscious through the entire episode. My jaw clenches so tightly that I can barely open it when it finally stops.

My doctor went on vacation and said that he couldn't do anything for me...that I had to go to a shrink....since it's all in my head! I was furious! Then I did some research and now I understand it better. But I still don't know what to do or if there is anything that I can do to stop these.

Anyone with any suggestions would be greatly appreciated.
Mona
:roflmao:

 

[RobinN]

Hi Mona - Welcome to CWE
When I read stories like yours I just want to go shake that doctor and say, "What are you thinking?"
You have been through a lot of trauma. Can you tell me how he knows for certain that it is PNES? Even with that diagnosis there is something wrong. My daughter was givent that diagnosis from one reputable med center, and it messed up our lives for about 5 months.

Sounds like inflammation has brought on a lot of medical conditions. You might consider using that as a starting point. Figure out what and WHY. I am afraid that you will need to be proactive in your own care, as our system is not equipped to deal with figuring out the causes of our illnesses. We tend to want to put a bandaid on them and move on quickly.

I would think that Neurofeedback might bring you some positive results. That and eating extremely well to alleviate the inflammation. The body needs good nutrition to heal. FM and CF are known to be helped with nutrition. It is what has been a life saver for us.

 

[mclicky]

Canadian Doctors

I've gone for an EEG and had an MRI. They say nothing is wrong. ... LOL!
If nothing is wrong, then why is this still happening to me?

As to changing my eating habits, that started last November. For some reason, my body decided it didn't want any 'junk food'. I don't desire chips, fried food, chocolate or any other types of sweets. Lost more than 30 pounds! I desire fruits and raw vegetables...along with hummis.

I don't drink alot of coffee...usually no more than two cups in a day. I've increased my water drinking to 6-8 cups a day.

My doctor is not really knowledgeable. When I first went into the hospital with my second seizure, the doctor on call didn't come in to see me until I had been there three hours! Then he said that it was just a migraine! I told him that I'd had migraines in the past and that this wasn't a migraine. He totally ignored me and told me to go home.

Being in the hospital, they only watched me every time I had a seizure. But they didn't run any tests except for a MRI. I had to check around for a EEG clinic as the one that they were going to send me to wasn't taking patients for more than three months. I got in...in two days!

But, still have no results except to tell me that they aren't real seizures. My body is so sore all the time and nothing really seems to stop it. I wish that there was something that I could take to stop these 'non-seizures' but so far I haven't been able to locate anything in my research.

 

[Cint]

My doctor went on vacation and said that he couldn't do anything for me...that I had to go to a shrink....since it's all in my head! I was furious! Then I did some research and now I understand it better. But I still don't know what to do or if there is anything that I can do to stop these.


:roflmao:

Hi Mona,

Sorry you've been through such a bad event. Sounds like your dr. needs to stay on vacation forever since he said "it's all in your head." I would have been furious, too!! I would have said, "Yes my brain IS in my head, now what is the problem?"
What type of testing have they done for you? Are you taking any meds for the seizures? Are you seeing an epileptologist or neurologist?
I hope they can find the answers for you.

 

[mclicky]

Continuation

So far my doctor has only given me Ativan for after the seizure....to relax the muscles.

I'm not seeing anyone else yet as my doctor hasn't made any more appointments. But, I have started to see a homeopathic doctor. I was there yesterday and ended up having a seizure in her office...so at least she got to see what happens. Right now we are trying to get me off of some of the medication that I've been on for years....prescriptions meds. We're not sure if one of them may have been part of the cause of these seizures, but I figure that anything that we can try is better than nothing at all.

 

[Nakamova]

Hi mclicky --

What you're experiencing sounds very real. It's not unusual to develop seizures after a traumatic car accident. Your biggest problem (aside from the stresses of the seizures themselves) seems to be dealing with your doctor. I hope you can find a doctor, neurologist, or other caregiver who can listen and help. And definitely look into the strategies and treatments mentioned above.

Best,
Nakamova

 

[RobinN]

You might also check out some threads here on Magnesium.

 

[kelso54]

I get so tired of having to tell/ask people this, "have you had a monitored eeg?"! An eeg that does NOT record a seizure is next to useless, it shows that you are in range of normal. They HAVE to record a seizure, several is better. A monitored eeg is a hard thing to go through; but well worth the hassle. You are wired up as with normal eeg; but you stay wired untilo you have seizures, you also have a vidio camera pointed at you the whole time. This allows doctors to locate seizure focus.

 

[RobinN]

.... however even with a VEEG you are not guaranteed that you will have an episode. It is rare that you will be allowed multiple hospital stays in the "hope" that you will capture one.
These tests were not very helpful to us.
Seeing my daughter on the ground in a tonic clonic was all the information I needed.

Neurofeedback was a much better use of my time and money.

 

[Eve]

Mona

I am sorry to hear about your problems. I can understand your frustuation. Have you seen a neurologist. You may need to see a couple different ones until you find one that you like.

Your DR was way out of line to tell you that you need a shrink maybe you should stay away from him.

Good luck I hope you get the help you need. If the pain gets bad you might be able to get better help in the ER room. Just a thought......................

 

[MrFun]

Hi Mona,

this thread really caught my attention, since I seem to be going through something "similar".

I started having problems with my eyes. Anytime I'd go near florescent lighting, I'd actually go blind.

I had this 20 years ago in high school a few times. Does it start with black spots, or blind spots, and then it spreads and you almost go blind and need to go out into the sun (natural light). Normal eye sight returns in about 15-20 minutes?

Then when the seizures subside, I get very cold! Two or three blankets and I'm still shaking.

Weird. Before I get my painful seizure I used to get very cold and shake. Do you feel a pulse in your finger tips?

I don't blank out, but am conscious through the entire episode. My jaw clenches so tightly that I can barely open it when it finally stops.

My seizures feels as if they come from my jaw or behind my eye, it's always the same side. How much pain are you feeling during these seizures? Does it feel like a stroke? How intense is the pain on a 0-10 scale (10 being the most)?

My doctor went on vacation and said that he couldn't do anything for me...that I had to go to a shrink....since it's all in my head! I was furious!

My doctor thought it was a panic attack before she saw the home made video. Don't give up, don't feel angry. Your doctor is just clueless at the moment. You will find someone that will help.

Then I did some research and now I understand it better. But I still don't know what to do or if there is anything that I can do to stop these.

*sigh*. That's where I am currently as well. Have you been put on medication yet? Which meds have you tried? Can you provoke a seizure? Can you cut one short? Are you keeping a journal? What makes it more "aggressive"? What do you feel deep down is the cause?

I'm really sorry you're going through this. I also know that seizures, no matter if E or not, are very emotional experiences.

One thing I learnt from this forum is, you are not alone. I'm new here, but already people here have supported me emotionally more than I could ever have guessed.

All the best and keep us updated please,
Alex

 

[lrjg]

Mclicky, How frustrating!! Having a good doctor is everything! I was first diagnosed by a good doctor. It was after testing confirmed my diagnosis of seizures, trouble hit with medications I was prescribed. I was allergic to or had a bad reaction to all of the seizure medication. The last reaction to a medication put me in the hospital and the Neurologist telling me that I am now over his head. I am glad he was honest. He ha me transferred to a more advanced hospital, the Cleveland Clinic. It did not take long for the new neurologist to tell me that I should look into the Temporal Lobe surgery. My head was spinning with making that decision! I went in for testing, but my fear of it made me put it off for nine months. My seizures and memory was getting worse very fast. This knowledge and the advice from others who had already had the surgery is what made me go forward with the surgery. This is where I can relate to your pathetic, unknowledgeable doctor you have described to us! After all of the testing I went in for the surgery. I ended up having to have internal grids put in before the lobectomy itself. I was in the ICU for a few days after the grids were put in/on my brain. The morning that I was brought up to a monitoring unit with the grids in, I had the floor doctor come in to ask me a million questions. His last question was....."describe your seizures". They had changed so much in time, but I told him the parts of the seizures that I could remember. I let him know that my hearing would disappear, get extremely nauseous and get a feeling like a firecracker was going off in my head. (this was all caught on multiple EEG's) The last thing this floor doctor said to me after coming out of ICU with my skull still in the frig. was......"You aren't having seizures, you are having panic attacks." This had me upset right away. I knew right outside my door was all the records from all of the testing! How could he say that! Then, the next morning he stuck only his head in my room and said...."Well, did you have any panic attacks last night?" (Me/my insurance company was charged $5000 every time he stuck his head in my door to say this!) I had enough of him saying this to me each morning. I asked a nurse to have him come back in so I could talk to him. For two hours he sat at the nurses desk right outside my room talking about everything but medical things! He then left the floor without coming in. It was about 10 minutes after he left that they nurse came asking why I want to talk to him. I broke down crying and told her why. He neverrrrr came back in to talk about it! It was after three weeks with the grids in my brain, 3 strokes and a couple seizures that I went back in to have the lobectomy done. It was found to be a lot worse than expected. Anywayyyyy, it was a year later that I got an email from the Cleveland Clinic asking me to do a patient survey with my experience there. I just could not forget this doctor and what he did to me day after day. I decided to write about it in this survey. I was shocked that 15 minutes after delivering the email that I got a call from someone from the hospital They were very upset about it all. They said they will be talking to the doctor and get back to me. It didn't take long for them to call back and apologize for all of the verbal abuse from him. They let me know that what he did to me will be put on file and that he will be calling me!!! This doctor did call me. He tried to change the subject immediately. He only wanted to talk about hearing our grandfather clock! He asked if I was at church! He said he doesn't remember saying that to me!!! It just made me more angry at this doctor. All I can say after telling you of this experience is....RUN! There are better doctors out there. It may take longer than it should to get the information you need, but when you get it, you will know you did the right thing finding a doctor that knows what they are doing.
With so many other people who have gone through what you are, ask people who they found to be a good doctor. Like me, you may have to travel further away, but....in my case, if I had not gone elsewhere, I wouldn't be here today.

 

[gnault]

McLicky,

What part of Canada are you from? Except for long wait times to actually see my neurologist I have had a relatatively good experience. I live near Halifax here in Nova Scotia. Even if its a long wait to get to see him he is good at responding to my questions or concerns through my family doctor. I am waiting now to see him for more specific questions/concerns.

 

[Janus]

I am sorry that happened to you. I do not mean "sorry" in the platitude / perfunctory way. I hope you fond what you need here.