When to seek a second opinion

Forums: Second Opinion, Epilepsy, Medical, Health
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Hi everyone,

I lurk more often than I post. I know I am friends with some of you on Facebook and this is something that I have not told many people and would prefer to keep quiet from that aspect of my life.

A few weeks ago I was diagnosed with epilepsy. This has been quite a long battle to get this diagnosis as I have been having episodes since for at least 8-10 years (possibly longer)

Long story short they started me on medication two weeks ago and it has been a miserable journey since then. I have had several side effects and I gave my resignation at work today. I feel the medication has made things worse.

Long story short, I spoke to my dr. Via telephone today and told him my symptoms. He said it is absolutely not the medication and told me to continue taking it. He was short with me on the phone and I got the impression that he just couldn't be bothered.

So then I looked up my symptoms, read similar stories and found that several people have expressed the same side effects. It's doctor was also one of the many who didn't believe it was epilesy until my second abnormal EEG confirmed it.

So I am thinking it is time to seek a second opinion but I am not sure if I should just stick with it... Even though he didn't believe it at first he still did the additional testing that nobody else had done.

Any of you Bostonians know of a good neuro?

As per normal, thanks for listening to my frustration, this place has always served as a good outlet for me in a strange way. I do appreciate it more than you all could know <3

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@Crazielady420,

Hi, good to see you. Sorry about this tough time you are having.
I'd definitely see what a new specialist says, and that might be someone you'll be happy with over time - We like to trust our md's. (Well, that's my take)
I don't know Boston area doctors, but there are likely some very good ones around there. I tend to like to go to teaching hospitals for the quality of staff. If funds are a problem, a lot of teaching hospitals have specialized clinics.

I'd also say to keep reading - some of what people write is hogwash, but a lot of times you can learn by reading people's stories of their situations, and some medical info sites are pretty good.

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@Crazielady420,

Hey.

I'm not glad you got the diagnosis, but glad there is a diagnosis. That should help a bit.

Not specific to your meds, but my dad (hamburger/hamburgboy) recently went to see one of his specialists. hamburgboy was a bit concerned that while there had been some improvement in symptoms for one of the things he's been dealing with, there was still a problem. The doc said - there's a reason I gave you a 6 month prescription. It can take a long time for meds to work fully - it can also take quite a while to adjust the prescription to get the meds working most effectively.

At the very same time - there is nothing wrong with seeking out second opinions - about diagnosis and about medication. Is there a pharmacist you feel comfortable talking to - they often know more about specific meds than docs do. They also tend to know a lot about medication/medication and medication/food interactions -but sometimes you have to ask.

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@Crazielady420,

Seek the second opinion.

I was not diagnosed with epilepsy until just a few years ago...and I am 76. The grand mal siezures only came about once every two years...from about age 30. But a few years ago...the auras started coming so frequently, I was unable to function decently...and I went to a neuro specialist who definitely diagnosed epilepsy.

My first two control meds were a disaster...horrible side effects. But the third worked like a charm. Keppra.

Makes me a bit tired (all medicine to control epilepsy makes you feel a bit tired)...but I have actually gotten to the point where I feel completely normal.

It will work out...there are dozens of effective medicines...and the doctor has to experiment until they get it right.

Hope you are seeing a specialist.

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@Frank Apisa,

I'd be interested, by the way, if you have auras.

Mine was a very special type of deja vu. It came...and within a minute or two the seizure would hit. I'd go unconscious for half a minute and that would be it. Except for the terror it caused!

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@Frank Apisa,

Is that what happened to you that night? I completely lost it and disillusioned myself about my ability to maintain composure at all times. So much for being super human.

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@Frank Apisa,

I'm just watching MSNBC. A man is being interviewed. He says medical marijuana is effective for treating epilepsy. Funny coincidence.

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@ehBeth,

I see all your points - it's true figuring out meds can take a bit (don't get me going - I kept crashing to the tile floor after taking bp meds, got a big skull egg once). The doctor's grumpiness on the phone, hmmm. It wasn't to my ears, so hard to interpret from here - maybe he's an impatient ass, or maybe he was trying to calm her down with authority.

Definitely good to talk to a pharmacist.

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@Frank Apisa,

Aw, Frankie. Didn't know that. Glad you have a handle on it.

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@Frank Apisa,

Thanks everyone. I am going to seek the second opinion at this time, I'd rather a doctor that has time for me. Besides this doctor is always two hours behind and when I finally see him he doesn't go over anything in any details.

Frank,

I was diagnosed with temporal lobe epilepsy, to date to my knowledge I have only had simple partial and complex partial seizures. I have gotten the de ja vu that you described however the seizures do not spread to other parts of my brain.

I have several simple partials a day and the can be fine of weeks. I am not sure how many complex seizures I have as I don't remember the all. But since starting the medication I have noticed an increase

How long did it take for the keppra to work for you? That is what they started me on but I am having a very tough time on it myself. It's only been two weeks so I am hoping it resolves

Also, do you get a lot of goosebumps/chills with the medication?

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@Lola,

Yup. I thought I wrote you about the diagnosis. Musta missed you. But it was a grand mal seizure...although I am sure the wine and the bone contributed.

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@Crazielady420,

Frank,

Quote:

I was diagnosed with temporal lobe epilepsy, to date to my knowledge I have only had simple partial and complex partial seizures. I have gotten the de ja vu that you described however the seizures do not spread to other parts of my brain.

The deja vu was scary as hell. I hated whenever it happened. But everything with me is now under control.

Quote:

I have several simple partials a day and the can be fine of weeks. I am not sure how many complex seizures I have as I don't remember the all. But since starting the medication I have noticed an increase

Are you saying you are having more seizures...or more deja vu episodes. And this is all after you started the Keppra?

I am on a fairly high dosage...which was decided on after I spent a week in a hospital bed with wires running out of my head...through an umbilical. I post a picture or two.

Quote:

How long did it take for the keppra to work for you? That is what they started me on but I am having a very tough time on it myself. It's only been two weeks so I am hoping it resolves

With me it worked almost immediately. I had two other drugs before the Keppra...but my reaction to them was terrible.

Quote:

Also, do you get a lot of goosebumps/chills with the medication?

No chills...no goose bumps. Very tired and sleepy at the beginning...and Keppra rage kicked in big time for a while. Nancy was going to shoot me...but we went with B12 which eased me off the rage. The rage side effect can be disturbing...but very few people actually experience it.

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Hope youse all get a kick out of this. I was one week in the hospital with that goddam umbilical on. It was hooked up to an EEG...and was just long enough to get me to the jon...but what a horrible time sleeping.

They took me off all medicine during the week...and I did have one episode.

I am pretty sure the doctor was using me as a test subject in some research...as well as doing diagnostics. Glad that is part of the past.

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@Frank Apisa,

You da man.

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@Frank Apisa,

I remember one déjà vu episode, I walked into a bar, the day before thanksgiving. I couldn't shake the feeling, it had happened before, it was so overwhelming, even though I knew it never had happened.

I believe I am having more seizures, but I am super stressed right now. I have been have more complex partial seizures I think, all I know is I get my aura, which is a tingling sensation in my head and things go fuzzy, sometimes my vision is distorted and then next thing I know I am sitting at my work desk confused, no clue what I was doing or where time went.

I have some seizures where I am there but I am not, people try to talk to me but I cannot respond and I just try to shake my head to acknowledge them, those ones frighten me then most.

I am very tired as well, as sadly I already have anger/irritability issues so it hasn't helped much, but I just started noticing that these last two days.. I have never been a mapper, more of an insomniac but now I've been so tired I can't seem to function properly, which may also be where the trouble concentrating is.

My husband and I decided that it is time for me to take a break, reduce my stress and stay at home with the children. Hopefully that will bring some resolution, my job is very pressuring and stressful and that is where I have the majority of my seizures (I also think it is because I a, in front of the computer for nine hours straight)

Sorry I rambled!

1 Reply

@Frank Apisa,

I imagine that hospital trip was uncomfortable. I hate when they put the EEG wires on and off, the lady that does mine is so rough it can feel like she is rubbing my scalp right off! So I imagine having them on for an entire week must have hurt removing them!!

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@Crazielady420,

Quote:

I am very tired as well, as sadly I already have anger/irritability issues so it hasn't helped much, but I just started noticing that these last two days.. I have never been a mapper, more of an insomniac but now I've been so tired I can't seem to function properly, which may also be where the trouble concentrating is.

Do not fret over this...IT WILL GO AWAY.

You really should think about B12. Take a look at Keppra rage on the Internet...and see if you see recommendations for B12.

It was bad for me for a while...but I had no one to talk with about this except the doctor...and you know doctors are always too busy for give and take sessions.

The anger and frustrations WILL go away.

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@ossobuco,

Quote:

You da man.

I look a hundred years old in that picture. It was torture.

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@Frank Apisa,

I say you da man, you listen.

Or Lola will come and beat you up.

1 Reply

Listening, CL. Glad you posted here for sure.

1 Reply

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