When would you contact your doctor?

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Jumpwhat

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Hello everyone,

I'm pretty new. Been lurking around for the last few months and finally decided this am to ask a question! I'm very, very private about my temporal lobe E which is thankfully relatively easy to hide. I have simple partials very frequently and complex partials less frequently thanks to Keppra. I also have short absence seizures that seemed to start after a bad concussion in December. I rarely remember them and they're so short that it is hard to tell when they happen.

Anyways, on to my question. As mentioned above, I had the concussion(the loc, increase in seizures after, etc) in December and a month later had a bad case of viral meningitis. Both seemed to have knocked me back a bit E wise. I saw my neurologist in March to update her on everything and she immediately increased my keppra dose. It has definitely helped but I'm still just having problems. I am considering contacting her and asking if there's something else we can try but know a lot of it might be stemming from stress. I'm taking the mcat in two weeks and applying to med schools, which my dr knows about and agrees that now is not the right time to play with different meds. I also have a very stressful job working in the ER and my sleep schedule varies pretty dramatically week to week. Some nights I'm up until 2 or 3am because of work while others I'm asleep by 9 and at work by 6am. I'm working on getting a regular schedule set for myself because I know sleep is a trigger.

I guess what I'm asking is at what point do you call your doctor? Just to check in and say things aren't perfect, I'm having days where I have a dozen simple partials and a suspected absence or two. I have a follow up scheduled for June anyways bc we are changing my meds up and she knows I've been having a tough time. I sort of feel like an MRI and EEG would be a good idea after the "trauma" my brain has been through between the concussion and meningitis. But I also know my current lifestyle has something to do with it. Thankfully the mcat will be out of my life come the 17th, which is good. I feel like I spend 99.9% of my life right now hiding my E and doing my best to compensate for everything. Only the important people who absolutely have to know do know and I like it that way.

If you read through all of that, you deserve a cookie!
 
Ok, Give me my cookie!! :) Really, you are under way too much stress and stress can/does bring on seizures, as does meningitis, but I think bacterial meningitis is worse for seizures. And a concussion isn't good for seizures, either. So if you already had TLE to begin with, all this stress is going to decrease your seizure tolerance. Seizures generate more seizures, too. And lack of sleep can bring on seizures. So how long do you think you can keep this all hidden? Eventually, it will all come to light and seizures could increase if you keep up this "madness".

So, IMO, now is the time to call your dr., before your seizures increase and turn into intractable E. Just sayin'.
 
Sending an e-cookie your way! Thanks for the support. I guess I just need a little nudge to call my Neuro. Despite working with doctors all day, I tend to avoid them at all costs and need a bit of coaxing before calling with my own problems. I haven't had an EEG or MRI in 18 months or so after the initial round of testing so I'm probably overdue for it to be repeated. I'm still fairly new to this E thing so don't know what people usually call their doctors about.

Also, you're right and bacterial meningitis is far worse and is the one that could kill you. I luckily (unluckily?) just had a bad case of viral but still had a decent amount of inflammation. Bleck!
 
Welcome JumpWhat!
Heard drs. are the worst patients... Yes, you need to talk to your dr. They will try to help you figure things out. Stress and lack of sleep are very common triggers and should be managed, if at all possible. Unfortunately, life gets in the way!
Good Luck !
M
 
My doctor has asked that I contact her if any of the following occur:
-persistent change in seizure frequency or duration
-a change in what occurs during a seizure (ie. movements, starting to lose bowel or bladder control, etc.)
-seizures changing in time they occur (mine are nocturnal, so if they started occurring in the day my doctor would want to know)
-injuries resulting from a seizure (up to now they have never caused injury)
-signs of intolerance to medication (eg. side effects can occur even a couple of months after reaching peak dose).
 
Well, I called today and reported the continued increase in activity even though it has been less severe since the keppra increase. My Neuro immediately scheduled an EEG to see what has changed, if anything. She thinks it is likely related to the concussion and meningitis, who knows what is permanent damage or what it just my brain continuing to heal. MRI is the next step after the EEG. She also wants me to increase my keppra but I just adjusted to the current dose and gained a little of the weight I lost. Might hold off on that for another week. Biggest thing is trying to reduce my stress level (MCAT can't come soon enough!!) and push for a normal sleep schedule.

Bleck! I don't really know what I was expecting but it is a bit discouraging. You spend so much time convincing yourself that the mini time chunk losses and simple partials are "normal" and will "go away".

Thanks for the support everyone, I appreciate it!
 
Good luck with everything! I do wonder, considering your career path, why you feel you need to keep this so hidden--I wonder if that creates even more stress. I know a lot of workplaces are more accommodating and understanding of epilepsy and disabilities in general now (I know mine is, so maybe my perception is skewed), and having a few key people know and be ready to accommodate me when I need it is a huge relief. I have support and understanding from my boss and some key work friends and it creates a better environment and less stress. In the medical field I would think they would be even more understanding. Just a thought--not every workplace or approach is right for everyone of course.
 
Ehh, a lot of it is the new job and not wanting to lose it. And a lot of it is my activity is usually very short, despite the high frequency, so it is relatively easy to hide. The ER is such a fast paced environment that I don't want anyone to doubt me. I'm a medical scribe so I never actually work with patients by myself but my memory and charts have to be spot on.

Everyone has there own story but my family, while wonderful in every other way, refuse to acknowledge my E. Over the years they have worked so hard to suppress it that I spent a decent chunk of my life in denial. Only recently have I privately sought treatment despite their objections. The need to keep everything quiet spills over into my personal life without me realizing it I guess. I'm sure many of you can relate with that!
 
good luck with the job. I worked respiratory night shift for 18 years. I always told them about the seizures when I was hired. it is safer. you can be changed to a different less stressful job in the hospital. and change to dayshift. I have seizures every three months and I am on tegretol and topamax. keppra was evil for me. made me nasty and I had to go to anger therapy. worked to take me off keppra. finding out hormones affect me a lot.
I have been having seizures every 3 months for 34 years. do I get a medal? lol
good luck changing the job before they fire you.
I was fired for having a seizure in patient's room
before that I was having them at home.
good luck.
 
Wow that is some work schedule you have. I was worried I would not be able to cope working full time in a busy, stressful job as a team leader but at least I don't work shifts. It's hard to admit sometimes that you need help and support but this is a great forum for this and being able to remain anonymous if you wish. Its not weak to seek help. Good luck and try to destress as much as possible - long walks, nice massage, chilling with friends - it all helps.
 
I contact my doctor when my seizures increase after I have gone months seizure free, or when he ask me to call and tell him about the seizures I'm having like now.

My neuro always returns my calls except when he's out of town.
So I'll either hear back from him tonight, or talk to him when I call his office.Last time I called I talked to him for a few minutes.
 
Thanks, I'm currently being treated by neurologist and neurosurgeon. My neurologist has been fantastic. She gave me her e-mail address and I have been able to ask questions easily. The surgeon also gave me his secretary's number so I can contact him if my symptoms worsen whilst I wait for an appointment. Good old NHS! It certainly all helps.
 
Jumpwhat

You have questions that matter to you and your health. Schedule an appointment and talk with your doctor regardless whether you feel they are trivial, you will get them answered. Good Luck.

azsurebleu65
 
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