NEEG start of day 3

[Sheripark]

So frustrating! I pushed the button 4x and the doc informed me that there was no seizure activity! She suggested psychosomatic or other organic condition possibly!! This was at the 24 hour mark. REALLY? She said I could go home! I said no and wanted to stay to capture one of my typical episodes.

My episodes here are only lasting about 5 sec and because none of them showed up then she is yanking my diagnosis. I'm serious! I said I was suppose to be here for 5 days and she said fine but she was doubtful I would have seizures because what I describe does not sound like seizures. At this point I was balling. She questioned why I was upset and why I would even want the diagnosis of E.

I spent a miserable year not diagnosed and feel like I would be back to square one. Not to mention I'm in the military. A diagnosis I am hopeful to waiver (2 years success so far) but psychosomatic!

I was frustrated and said I have been with two neurologist that both did EEG and told me (diagnosed me) with a seizure disorder. If this doc doesn't think I have it then why have I spent the last 2 years on 5 different meds, dealing with side effects and my current drug Kepra that is life altering for my entire family! I can't believe she questioned why I would be crying! She said she looked at my last EEG (the actual test) not just the report and commented that my current neuro "overread" it.

I once again feel dismissed and made to feel like I'm lying. This is actually harder than dealing with E. She also said that seizures have patterns and what I describe is not a pattern. I told her I'm dizzy almost all day with anywhere fom 2-15 episodes per day of a shifting sensation and feeling of the earth going to fall out underneath me. My brain will feel like its moving inside my head and my eyes feel like their going in circles even though others can't see it. My head at times will ever so slightly move back and forth that I feel and my husband can see. She said that's not a seizure!

I know someone out here will have some encouraging words/advice to help me.

Thank You

Sheri

 

[Sheripark]

Oh ya and she that being dizzy is not typical with a seizure disorder. I can't say the dizziness is med related because I have been dizzy since the beginning of being sick even before my meds. It really never went away. I deal with it. When I close my eyes I feel like I will fall down (not a seizure) according to her. Uggg

 

[Soniag]

i would see another neurologist to get a second opinion as there are some out there who can sometimes miss the important details

 

[Nakamova]

Is this neurologist an epileptologist? I get a little suspicious when one doc says that another "overread" an EEG. Regardless, the current one doesn't sound very sensitive or compassionate, so it may be worth looking --again -- for someone who can come up with some answers.

 

[Sheripark]

An epileptologist. Your right the biggest blow was when she said my neurologist (that I love) overread my last EEG. She is also convinced that my first neurologist is mistaken as well. She only has his report (seizures) but completely dismissed it. She said without seeing the actual EEG she is hesitant to accept the diagnosis. This after only 24 hours with me.

One thing interesting though is that I completely stopped keppra (hard the first day) but I feel like myself again. I think I would have went ape poop on her otherwise. I'm still having very small episodes. I'm not even pushing the button. It's such a production.

Last night at 230 am I woke up and it fealt like there was a small earthquake. At first I thought my hospital bed was moving or a gurney rolling by outside my room then I realized it was me shaking. Not flailing but vibrating almost from the inside. Do you think that is a seizure? I had two of those here. Did not push the button the first time because I wasn't sure. The second time I did though. I have felt this at home before and always look at the earthquake report for the northwest the next day. Do you think it's a seizure? I see her today around 5 and hopefully she will say it is. Thx!!

 

[Sheripark]

Nightmare! She just came in and told me I don't have seizures and that I can go home unmedicated! I am completely distraught!

 

[momof3boys]

OMG! I would be so mad! Are they willing to keep you for the entire five days? This is rediculious! It sounds like she doesnt have her head on straight! Did she give you any reasons for her answers?

 

[Sheripark]

I know! I'm balling my eyes out! I told her about false negatives but she said she has never heard of symptoms like mine being seizures (dizzy, shifting like the ground is going to fall) those are a few. She said it is not a true manifestation and that it must be something organic???!!!! WTH does organic mean? I just left a message with my neuro asking about stopping my meds. I hope they call back soon. I told her I wanted another day. Should I take the keppra or stay off?

Also, off the keppra this horrible hip joint pain has completely gone away. And typically I would have wanted to punch her but instead I'm crying. Weird?

So tonight on my last night would you stay off meds?

 

[Nakamova]

Did the Keppra help at all with your symptoms? if it didn't then it may be worth trying a different anti-seizure med anyway. Silver lining that you at least get to feel like yourself off of the keppra for a bit. I think the neuro is the one to advise you on the whether to stay off. (My instinct is always to de-medicate, so my opinion is unreliable )

Did the neuro have any suggestions for other tests to do/areas to look into? If it's really not brain-related (not that I'm agreeing with the neuro), maybe there's something with your cardiovascular system?

 

[Sheripark]

She suggested I see this Neuro guy that deals with dizzy patients. I declined respectively. I like my neuro doc. I follow up with my neuro on July 16th but her nurse said she would call me today about the keppra.

Ok so keppra totally got rid of my auras that were all consuming and 24 hours a day. However I still had what I thought were break through seizures. Description, lasting bout a minute or less, face and roof of mouth tightens, not dizzy but a sifting sensation then the shifting will slow to a slight circular motion with my head. My husband would say he can only notice the slight circular motion and that I look distant and annoyed. I can talk and am completely aware of my surroundings but choose not to because I sound drunk or confused. I also feel like I am overstimulated so talking annoys me so I simply say siezure and my family stays quiet. This is if they last for close to minute. Most times it's about 15sec so I just ignor it and pause for a sec than go back to what I was doing. This epileptologist told me that is not a seizure but maybe something organic?

She told me I didn't need to be on keppra even though it has releived me of my auras which are WAY worse than siezures. She stuck to her guns. After talking it through with my husband while I was not as angry I THINK I'll stay off the keppra until the 16th. Unless MY neuro does call me back and suggest otherwise. I suppose it would be good to see how I do? I already feel my auras coming back. On a scale of 1-10 it is just a 1, like this evil thing knocking on my door saying, "I'm coming back"

I leave today. They were so dismissive last night they told me I didn't even have to push the button. Really?

One more question. This epileptologist states with complete conviction that people with E are not dizzy "all the time". Is it your experience that the folks out here are dizzy? I know it's not med related but from day one, three years now I have been dizzy.

Thx for reading

 

[huskymom]

This woman sounds terrible! I am always amazed at some people who are doctor's. They have absolutley no sense in how to deal with real live humans. They know the books inside and out, but not how this stuff really works. How can she say that your symptoms never happen? We are all different and all have different things that happen. And they kicked you out! When I was in for mine, they told me that most activity doesn't even start until day 3 or 4. I think there were 4 of us in at once and we all seemed to start seizure activity at the same time. Regardless, try to calm down if you can. I would stay with the dr that you love and disregard this chick altogether! Have you had an MRI of your brain and neck?

 

[Nakamova]

My husband would say he can only notice the slight circular motion and that I look distant and annoyed.

This sounds seizure-related to me. I've only had tonic-clonics, but friends have said that I get that same look beforehand. (Not that I can't be truly distant and annoyed sometimes, but friends can tell the difference from the real thing).

I don't know about the dizziness, but if it coincides with the rest of your seizure symptoms, it sounds like it's either part of them or related to a contributing trigger (like brain/neck/circulation issues). If your seizure originates near the parts of the brain related to determining balance (either optically through visual cues, or the inner ear stuff), then it could be causing dizziness that way. See http://www.dizziness-and-balance.com/disorders/central/epileptic.html

 

[Sheripark]

Wow I looked at that link and it seams just like me. Yes kicked me out at day 3! Then this psychologist guy (really pompous) gave me the results of my test (personality) and said I was depressed and have anxiety. I reminded him he told me to answer the questions how I feel lately. I said I'm on keppra and he said it didn't matter because I was in the 98% which means I was already severely depressed before the keppra. I was fuming inside. Then he suggested I see this psychiatrist/life coach and look into cymbalta. There must be some keppra still in my system because I told him to get the F-k out! He wouldn't leave, asking me to describe my frustration. I was like REALY get out. The last thing I'm going to do is give my body another poison!

Oh this is just horrible!

 

[Nakamova]

They are so quick to offer pills -- I think that's the only tool in their toolbelt.

 

[epileric]

I'd watch a psychologist who tries to send you to anyone else for drugs because they are not trained in using drugs. The whole point of psychology (as opposed to psychiatry) is to address the problem drug free and drugs are not supposed to be a tool in their toolbelt.

If a psychologist sent me to someone else for drugs I'd assume that either they were just not very good at their profession or that there was no drug free method to address my problem.

 

[Sheripark]

I can't believe how rude I was to him. I totally reminded him of his appropriateness to suggest cymbalta. I think if he would have made a general comment about seeking that type of care I would not have been so flippant with him. He was working me up especially when I told him to get the F-k out and he didn't! He actually told me my reaction and denial were text book depression and anxiety! Oh this is a sad day.

The epileptologist here said she talked to my neuro and told her her findings. I asked if my neuro agreed or disagreed. She said my doc did not say anything just thanked her and that she would review it. I am hoping my neuro calls me today.

Oh ya and the epileptologist said that keppra is not a good fit should my doc plan to keep me on anti seizure meds because I am too emotional. I also tried to show her the link above. Omg those are MY SYMPTOMS! She said "no" because it would have shown up on the EEG! Ugh!!! She said reading Internet articles is not a replacement for her expertise in the field. She says it's what she does all day.

 

[Sheripark]

They make me feel like I read the article and psychologically manifested it after. She actually said that in a round about way.

 

[JLogefeil]

Omg.
Honestly thoes questions that the doctor asked you, we're the same two questions the doctor aske me to. I did the same thing and was crying as well.
Everything your going though is what I have been going though. I don't even like going to the doctors becuase they might not beleave me. I wish I could help, I feel we are goin though the same thing.
Have you been to a pych? I have and they ruled it out saying that there non epileptic. That might help if you do that so then the doctors will take you more serious.
There is so much more I can write. Also I have been making YouTube video of everything that's been going on with me and what doctors are saying doing, also what my pych has been telling me to do and I feel that you might get some usefull info from the videos.
The reason I started the videos is to help people who are going though what I m going though and to let them know there not alone.
Just go to YouTube and type in the search box Jujub428 and there should be about 9 little videos. O just to worn you I sound pretty stupid but I know what I m talking about.
Good luck

 

[Sheripark]

Gosh thanks for your response. It does make a difference. That was so stressful! I'm going to check out your videos and get back.

 

[julie wishes]

Well, yet another familiar lame doctor story.

When I originally went to my neurologist, my complaint was constant dizziness. She ordered an EEG. I thought she was wasting resources giving me an EEG because I never experienced seizure activity. When I questioned her, she said its standard of care to test people for seizures when they are complaining of dizziness. ???? I guess its all subjective. Wouldn't you love to get a copy of the EEG results and learn how to read them yourself?

Check out my threads called over 40 simples, and flabergasted. If you want. Similar only in doctor response to an issue. Conflicting information, vague, cold hearted. I swear she doesn't even want me as a patient. If she does, she's got an odd way of showing it.

Your struggles make me angry. Angry with the system, the false negatives, the quick to judge MDs, and the lack of proper informed care. Not to mention they make us feel like cattle. I wish more people posted about good MD experiences.

If I were you, I would get out of there. Breathe, regroup, go with what you know and stay with the neurologist that supports you. Im sure you wouldn't care to ever see this doctor again. Staying off keppra is good. That stuff is horrible to me (but thats a very biased opinion).

Try to get some rest. This whole thing has probably stressed you to the Max. Im sorry conflicting words make you doubt your whole existence. I get that. But after some time passes you will forget about her and move on with the positives.