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empath4u

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Hello Everyone,

I am new and I am in need of advice from whomever would like to share with me.

I was diagnosed with epilepsy last May. I saw a new neurologist for an EMG, and it was normal, so he decided to do an EEG for some reason. He said, I expect it to be completely normal, but just want to check.

I came back the next day, and during the EEG, the tech got up, walked out and came back in to tell me the doctor needs to talk to me when I am done. I thought, okay what is happening? So, he comes in and says I know what is making you feel so tired and the cause of your constant muscle pain and I can give you medication so you can feel better. I said, ok. He said I am having sz, constantly and my EEG was really bad. He explained how I am going to start the Lamictal starter pack. He really did not explain what sz were and what epilepsy was, so I just took the medication and went home to research myself. Once I learned some more, everything started to click from past situations that I thought were very strange at the time. Now, things started to make sense.

I kept having my unusual events, and told my dr that I was not improving as much as we'd hoped and I could not tolerate more than 300mg a day of lamictal. He added Keppra. I still continued to have events and I actually dropped a heavy table leg on my foot and fractured it. I think I had a sz and then dropped it, and then the pain triggered another one of my larger events. I called him to tell him about this, and he said you need an epileptologist, and referred me.

I waited 4 months to see the epileptologist, and I was excited for the appt. It did not go as I had hoped....They said they did not believe it was epilepsy and said let's do a VEEG. They also said they believed I was having Non Epileptic Sz. I was even more confused now. I was going to have to wait 6 months to get the VEEG and my medications were not working and making me very sick. However, I had to accept that I had to wait.

I got a call of a cancellation the first week of April. I was admitted and the VEEG was started. Day 1- I got settled in, nothing happened. Day 2 they stopped my AED meds cold turkey and Day 3 I had a horrific event and to say the least, it was disappointing because I did not get the treatment and support I deserved. If anyone wants to know about the Day 3 event, I would like to share about it, but I won't go into detail on this post, it will take too long.
Due to the lack of care and treatment, I asked to be discharged bc they were basically saying my Neurologist was wrong and they were right that no electrical charges were present. They said I needed to see a Psychiatrist but, the inpatient dr was not able to see me today. I said I need to find one that my insurance covers. I was so upset about this whole test that I just wanted to go home. If they thought I did not have what I was told I have, what's the point of being here any longer? I got them to discharge me and left.

I was able to read the report and it left out important events from my stay and just as the admission stay it was a disappointment. It did say that there was theta activity over the left and right temporal lobes. I did some research on my own, and the activity my 1st neuro said was on the EEG are the same type as the temporal lobes emit. My symptoms are exactly what a person goes through when they are affected by temporal lobe sz's..... So, I called to make my follow up, and they were going to blow me off for another 4 months. I said, I need to be seen. I am suffering, my medications are not correct and I need to understand what is happening to me!! So, the nurse was magically able to get me in the end of May.

I am not expecting anything from the follow up. At this point, I think I am going to find a 3rd Neurologist so I can see what they think and if someone can clear this up for me..... I don't understand how one Neuro that does EEG's in his office everyday can be so wrong. I don't understand how the 'specialists' can say he is so wrong and they are so right.

I am suffering with my symptoms. My life is constantly on hold. I feel like I don't have support and no one around me understands what this is like. I have around 15 other diagnosis' that I deal with on a daily basis, so the sz's just make everything worse when the other stuff flares.

If anyone has any advice or experiences that are similar to mine, I'd love for the input :einstein:

Thanks for taking the time to reading :D I am looking forward to meeting all of you and getting to know your experiences as well.
Aziza[/COLOR]
 
Welcome, I hope you find this a good supportive and helpful place to be, I know I have. I am so sorry to hear you have gone through much. Where are you (eg healthcare system) doesn't sound like the states. I've found each doc is different as to how they interpret the tests, but yours does sound frustrating. Research what neuro docs you have available. See where they went to school, how long they've been in practice and any other info (referral if you know someone) to get someone you're comfortable with. I took advise here and got to an epileptologist and frankly, I'm not happy with her, going back to my previous one (she was a colleague of his) and she was quite rude and really didn't give me any more info than he did. Anyway, welcome and be comfortable.
 
Hi BlueCat,
Thanks for writing back and welcoming me:D I am on SS disability, so I have to be on Medicaid. I think that does have something to do with the treatment regimen I receive. I am in the SW of the US lol
I am going to do more research about the neurologists available to me because my first one seems to be done with me, the "specialists" seem to know everything but don't seem to take the time to listen or even care. If they are specialists, you would think they would already know the things that I was able to find out in an hour on the internet! Especially since sz's vary and come in all forms.

What type of epilepsy do you have?
 
I was diagnosed with JME at 42 (always said I'd never grow up). I've had 4 sz's total in 12 years. The epileptologist actually asked me if I'd been in special ed in school - I was full scholarship to an honors program in a well known university. Seems to just read the questions and not pay attention to the patient. As you said, the szs come in all forms, so we can't really be broadbrushed, it's so individual. Good luck, hopefully you're near enough to one of the bigger cities so you have a larger pool of docs to choose from.
 
Hello -- Your post made me feel a little sick and very angry. Nobody should have to go through this. I know something about it since I have gone through something like it. I have left temporal lobe epilepsy - until someone decides I don't.
If and when I can think of anything more to say I will say it, but in the meantime I suggest that you find a way to go to Johns Hopkins or Mayo Clinic or Cleveland Clinic. The idea is to get the very best care that you can get. Warmly, Bidwell
 
Hi Bidwell :D
I left out a lot of the horrific details... :( It is nice to know that someone does understand how it feels to be treated like this, even though it is unfortunate.

The way my seizures begin: I get an intense sense of dizziness, vertigo and everything goes black and then comes back. I have to get to somewhere I can lay flat with in seconds. I start to hyperventilate and then the uncontrollable crying begins even though I am not sad before, during or after. Then, my muscles all over my body start to shake like I am cold. I then start the teeth chattering. Then it's like someone hits replay and the loop starts all over again. This is what I call my "big" events. It can go on for 30-60min. However, the one in the hospital was insane and went on a whopping 3hrs. They said my heart rate when up to 138 my blood pressure was something like 160/110 (i can't remember and they seemed to forget to add that to my chart!) and my body temp went up to over 100degrees.... The last event I had at home, I started to hallucinate music...organ like music. During the episode, I asked my husband if the neighbors were playing music? and he said no. I could not believe it.

When I looked up the temporal lobe sz/s it talks about the crying or laughing. The flight or flight being triggered. Intense fear and anxiety and so on...what else did they want from me? A better demonstration? Then, I did not get any medications, but they did manage to give me Toradol, zofran and imitrex for the INSANE headache I had afterwards....ugh.

Before I knew about the generalized sz diagnosis, I applied to go to the NIH for an undiagnosed disease program, they denied me and said they could not help me. We are planning to move to Pennsylvania, Maryland or a major east coast city, so, I am hopeful that i will be taken serious and I don't want to tell them I have had the VEEG, and see what they come to on their own. I just want help, plain and simple. I got a huge sense of relief, then it was smashed to bits by another doctor that diminishes that hope.
Thanks for your reply :)
What symptoms do you have with your temporal lobe sz?
 
Hi Blue Cat,
I cannot believe that someone would undermine your intelligence!! I think that because I have educated myself in the past 10 years about all my illnesses, they don't take you serious when you know what they are talking about and can communicate with them on their intellectual level. Sometimes, I just want to play stupid to see if I get better treatment, lol.

That had to be scary for you as a young child to go through having such intense sz's. I have been told that I could have a gran mal at anytime, so that is why I am so stressed that they are playing these games with me.
Do you remember anything before and after your sz's? How do you feel after?
If all goes well, I hope to get to an east coast city and get re evaluated.
take care!
 
Hi, and welcome. That sucks for all you have gone throufh. I was a former ICU/CCU RN before me epilepsy/fibromyalgia diagnosis'. It has been my experience that when you are forearmed going into the docs office with knowledge, they somehow and for some reason feel as if you are challenging them. Yet with today's technology everything is out there for everyone to research. Just this past visit to my neurologist he had the balls to ask me if I thought my fibro was in my head when I tried to ask intelligent questions about it regarding whether or not it may be related to my epilepsy. I wonder (and don't take this wrong guys), if he would have asked me that question if I were a man. But in regards to your point to the medicaid and how you are treated, I too have medicaid now. When I had "real" insurance I noticed that I was treated somewhat more like a real human being and less like a number and feeling as if the doc was "paing it forward".
 
tiggy's mom

my neuro likes that I've kept myself educated about my epilepsy and about what is on the market to help.He even has complimented on several occassions and likes that I'm computer literate so I can look things up, I've even sent him attachment at a time.He'll call me back the same day unless he's not in town.


I've been seen and not charged several times when he's seen me for a brief visit.:e::twocents:
 
Hi empath4u.

Welcome to CWE. It's great that you're educating yourself on epilepsy. In a way that is what we are all here for. Some doctors find this a great thing, others probably just see us as a pain in the ass. :D

I've read of more bad experiences than good when it comes to dealing with the doctors. I've had very good experiences. A few mistakes here and there, but seizures are still a mysterious thing. I've had two doctors that have two different ways of working. Both were able to help me.

My latest neurologist has been able to take advantage of his resources and treat me properly. Without taking time to review my case individually, this wouldn't be possible. This should be the case with all epileptic patients and that is what you deserve along with the respect you did not get.

I hope your next experience is a good one and be sure to voice yourself when it is not. Hang in there.
 
Hi empath4u,
Just wanted to extend a heartfelt welcome to CWE. It is a wonderful place!
Beth
 
Hi Tiggys mom :D

Thanks for your understanding. I have Myofascial Pain Syndrome, which was initially diagnosed as Fibromyalgia by some very unfriendly Rhuematologists that never took me seriously. I later found out from my awesome Pain doctor, that it is actually a myofascial thing because it involves my fascia and muscles, however I do have trigger points too. I think condescending doctors make patients lives more difficult. We are generally ill and need help, and if you take the time to educate yourself in order to improve your care, they think you want to be sick!! I cannot believe that you were being accused of mistaking epilepsy for Fibromyalgia!!! On what planet does that logic exist? I know that Fibromyalgia seems to be a blanket term for doctors when they have no idea what is wrong with you....ugh. However, that does not mean there is NOT anything wrong!!

When I finally got my epilepsy diagnosis by my first Neuro, I asked him, so what is wrong with my muscles and why do they hurt so bad? He said, there is nothing wrong with the muscle itself....it's your brain constantly contracting those muscles and that is why they hurt and spasm all the time. Oh, but wait the big shot specialist seem to think he doesn't know how to read an EEG correctly. ugh

I have always wondered about the medicaid vs private insurance.... However, it is nice to know that it does happen. If you are disabled, and you can only get medicaid from SSI, why does that person have to be treated poorly or not get the standard of care just because they are not able to have private insurance?

My son was in the PICU when he was 10 days old, he went septic, liver failure and his oxygen sats were 54 :( Being a nurse in those units is a very difficult job. Our nurses were AMAZING!! I always notice how nurses do so much work and some doctors are condescending and treat the nurses poorly if they suggest something that the doctor did not order or say first...Nurses are awesome and they deserve so much credit for all the hard work they do for patients!! :D
 
Belinda,

I have had a handful of doctors that like when I bring forth information that pertains to my symptoms and conditions. However, there are many like Tiggy's mom mentioned that feel challenged and look at you like you are trying to self diagnose. I wish I could find a Neuro like you :D
 
N Sperlo,
I think logically, it completely makes sense that as patients, we are able to have a working relationship with our doctors in order to get the best care possible. I wish majority would see it this way. As you said, they are busy and if I can research what is going on with me and how my symptoms related to a specific area of the brain, why not listen to what I have to say? If I am completely wrong, so be it and correct me and I will end that route of research. I have more time and understanding of my body to research than a doctor that has thousands of patients, a family life and their own life challenges to deal with. I would think to a degree they would welcome a patient willing to take that extra step. However, I know there are people that do have legitimate mental conditions that cause them to over exaggerate things and that could make doctors overwhelmed and maybe annoyed.
 
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