New to this and currently not coping well...

[owlright]

I'm not handling this well.

I'm normally good at handling dealing with crappy medical stuff. I have really severe asthma (have been on SS disability for it for several years) and am dependent on daily steroids for that. I have other various issues that are related or med side effects but aren't as severe. My med stuff is already ridiculous - going out requires a couple inhalers, a portable nebulizer and meds, a few epi-pens, a glucometer, emergency snacks, a pulse oximeter, emergency steroid dose and prescription cough syrup. I'm used to this - I feel like this should not be affecting me this negatively.

I'm currently 18 weeks pregnant with my second biological child. I see a high risk OB, who sent me for bloodwork at 6 weeks just to confirm the pregnancy. I went to a lab at a stat care down the street with my toddler. I've had problems with passing out from blood draws in the past, but I am usually ok if I drink a ridiculous amount of water before hand, so I spent the hour before drinking a quart and a half of water.

Blood draw was not great from the beginning. The phlebotomist missed the vein on the first try, dug around a bit with the needle and gave up on that spot. No judgement, I'm hard to stick, so this isn't uncommon. The last thing I remember is her poking around my other arm to try to find a good spot.

Several minutes later, I wake up to 5 people in the room. Nurses, a medical assistant on the line with 911, and the stat care doctor. Apparently I didn't just pass out, but the doctor strongly suspected I had a seizure. I lifted my arms several times, picked up my head from leaning against the wall, and peed all over the doctor. (Thanks, quart and a half of water.) When I woke up, they cancelled the ambulance and let me call my husband to take me to the ER. My toddler came up to me and started yelling "Mom! Tummy hungry!" (at least he didn't seem to be affected)

ER does bloodwork, finds nothing there, tells me to see my family doctor. My family doctor refers me to a neurologist. I see a neurologist a few days later. Everyone - ER doc, family doctor, the neurologist, OB doc, and my pulmonologist that I happened to see in the middle of all of this think that it is a fluke, and that the EEG that the neuro ordered will clear everything up.

But I'm here now, so obviously it wasn't all a fluke. At my follow up appointment after the EEG, the doc diagnosed me with epilepsy (right temporal lobe) and started me on Keppra. This was about 8 weeks ago at this point.

It's not going well. About a week and a half after I started the Keppra, I became massively, horribly depressed and ended up calling the doc - I wasn't suicidal, but I definitely did not want to be alive. There aren't a lot of med options during pregnancy, so the doc decided to add a small dose of Lamictal in hopes that it would stabilize my mood, and if not, at least we would have a starting point for switching meds. The doc hopes that I can stop the Lamictal in a couple of months.

It's sort of better now. I have some good days as opposed to all crappy all the time. But there are still definitely days where all that I can manage is to get the kids what they need, like today. The kids have gotten everything they need, but it is 1 in the morning, I can't sleep, I haven't eaten (my OB knows this, I'm taking extra vitamins and all is good) and I keep crying. I don't want this to be a thing anymore. I know this sounds whiny. I don't want to take the meds any more (I was already over 20 prescriptions before the epilepsy). I don't want to feel useless like I can't do anything. I'd like to be able to drive myself to my own doctor's appointments (which are numerous) and to do things that I would do with my son before the seizure. I want to be allowed to go hiking again. I'm a camp director in the summer and I'm not even sure if that is going to be possible at this point.

I don't know what I'm asking or what I even want. It's just too much and I am hoping that there are people who feel or have felt the same way. I should be adjusting better.

 

[Fedup]

Considering this happened to you 2 months ago I would say you are doing pretty good. You may forget "I feel like this should not be affecting me this negatively." its not that simple, its one thing dealing with crappy medical issues its another dealing with Epilepsy. Epilepsy is something that effect you even without the medication, all the things that can go through your mind but do not worry this is something that affects us all. The first thing you need to know is Epilepsy does not own you or decide what you are able to do. But what about all the thing epilepsy stops you doing you ask - yes there are some things you will not be able to do but this is for your own well being, safety and the safety of others, so you see nobody said you cannot do things. Let me explain, I drive and I worked while there are others who are not so lucky and cannot drive or work or maybe just drive, so you see nobody said you could not go hiking again or anything else.

The only thing is you have to wait and get some sort of control on your seizures. Remember every medication effects everybody differently and it takes trial and error to find the right medication for you. Do not be alarmed at this, Keppra works very well for some but for others it is not good, there is keppra rage for example which is where you have sever mood swings resulting in you losing your temper over the smallest thing. All medication has some sort of affect on us, with me one of the things is depression which can be very bad but after 50 odd years of living with epilepsy nothing is surprising and I learned to fight it. I do not usually win but I fight, just as you will fight for things.

Just as you have done always ring the doctor when you feel something is wrong and discuses it with him and tell him what you want and go from there.
So tell your doctor you are still not happy with the way things are for you and explain it. Tell your doctor you cannot sleep and the rest

Lets get something straight this does not sound " whiny" it sounds normal for anybody. You are not useless, you are needed.

You cannot adjust anybetter after 2 months you have to take your time and over that time you will learn to accept epilepsy but accepting is something that does not stop.

 

[resaebiunne]

Hi owlright.

I too have depression, but for other reasons than from medication. If you have just started the keppra you will need to give it time. Hopefully the dose that you are on is high enough to control your seizures. If you are feeling okay with the idea, you may wish to discuss the idea of seeing a psychiatrist with your neurologist. Antidepressant medications are generally safe during pregnancy. I realize it is one more medication on your plate, but it could replace the lamictal (which is potentially more harmful anyway). When you are no longer pregnant, you could switch anticonvulsant medications to one that no longer causes you depression and you would not have the need for an antidepressant any longer.

This is just my $.02.

I couldn't imagine managing all that medication and carrying a nebulizer, inhalers, etc. just to go outside! If you can do that, you will manage with epilepsy just fine.

 

[Nakamova]

Hey owlright, welcome to CWE!

Yeah epilepsy sucks, and the diagnosis can take a good long time to process. So having to process all that while being a mom, being pregnant, dealing with allergies and health issues...well give yourself a big ol' pat on the back. And feel free to vent and "whine" as much as you want. CWE members get it. The things that can help a lot when coping with epilepsy are:
1. Venting to people who understand.
2. Asking a lot of questions. Information --what we learn from others and what we learn from our bodies and brains -- can help you get a handle on the weirdness that is epilepsy.
3. Being proactive: This includes making choices such as the ones in #1 and #2. Choose to seek out support networks, choose to get informed, choose to figure out what makes you happy and what makes you feel better. Some more tips about being proactive can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Your neuro probably explained this, but Lamictal and estrogen have a complicated relationship -- as estrogen levels spike, Lamictal clearance rates speed up -- so often the dose has to be higher than average during a pregnancy and reduced after delivery. Because of this, it's important that Lamictal levels be checked from time to time, and that your OB/GYN and neuro are talking to each other and are on the same page.

Spikes in estrogen can trigger seizures (it's called "catamenial epilepsy"), so at some point you might want to have a discussion with your neuro about that and relevant treatments.

Good luck,
Nakamova

 

[owlright]

Thanks everyone.

I haven't had any known or suspected seizures since starting the medication, and the one at the lab was my first known seizure. (aside from a seizure as a direct result of an incorrectly administered medication (into a vein unintentionally) when I was six. However, after talking with the neurologist, I have probably been having seizures in my sleep for at least a year. I would wake up having bitten my tongue and with a horrible headache, and assumed that it was just from clenching my jaw in my sleep, which is something that I do have issues with.

If I'm still having depression issues at my next appointment, the plan is to switch me from the lamictal to a pregnancy safe anti-depressant and then off of Keppra to something else when the baby is born. I haven't had issues with depression before, but I do have anxiety and PTSD - I'm mostly off my anxiety meds for the pregnancy - I'm allowed 1-2 doses a week if it is bad enough that I would go to the hospital otherwise. I know that both of those can increase the risk for depression, so I was probably playing with fire there already before the Keppra.

I've only had a few instances of what I suspect was the Keppra rage, but to be fair, I've been on steroids for a long time, so I'm probably a little better at recognizing and mitigating the med induced rage than other people starting from scratch. I still get rageful, but I can usually (not always) warn the people in my house that they are pushing it or go hide in the bedroom alone until it passes.

I think right now the docs are recommending more restrictions than typical because of the pregnancy. I've been told that I will be able to do a lot of the things if I can go 6 months seizure free (end of April) or after the baby is born (early/mid June). No hiking right now is a combo - most of the trails around here are steep, along rivers/ravines/etc. No doc wants a pregnant lady falling into a ravine, and I'm at a little higher risk for that than the average lady. I can hike on one or two of the flat boardwalk trails or around the neighborhood, which is better than nothing. At the six month point I should be able to go back to some other regular stuff as well - right now the docs don't want me carrying my son up the stairs or in a back carrier for hikes - he is an energetic two and a half, but also pretty small for his age and can usually make it a mile or so depending on terrain. And I'll be able to take the kiddo back to the playground without an escort - no climbing after him right now.

I am moderately worried about how things will go when I get closer to my due date. My last pregnancy, I got sudden, severe preeclampsia at 35 weeks. My blood pressure was fine the entire pregnancy, I went in for an hour of monitoring because of reduced movement and was told I wasn't leaving and was being induced immediately. (they got iv meds going before even moving me out of triage) I didn't have any seizures from the pre-e, and I was medically cleared for another pregnancy by the OB, but I'm worried that I'll be at a higher risk for seizures if the pre-e comes back. This is on my list of questions for my next appointment.

I see my allergist/pulmonologist tomorrow, so I can ask him if there are any anti-depressants or epilepsy meds that need to be on the no list because of my other meds or asthma/allergy issues. I usually will do a med trial in his office when starting anything new if it is potentially an issue. I can ask him if he has any sleep suggestions as well - little sleep is probably making depression worse, upping the risk of seizures, and I'm also off the insomnia meds for pregnancy.

 

[Porkette]

Hi owlright,

Welcome to CWE! I've had epilepsy for 46 yrs. and take my word depression is all part of the epilepsy and a lot of it is do the meds. I know when I was on Keppra the drug increased my seizures like crazy so I went on vimpat and that helped me a lot. I would have seizures in my sleep but then my Epileptologist ordered a sleep study done along with an e.e.g. and e.k.g. and they found the seizures were always happening 1-2 hrs. before I woke up in the morning. Once I was on vimpat those seizures stopped but I still deal with absence and complex partial seizures. Some of your seizures could be do to hormones changing. This is what has effected me a lot over the yrs. Also I have more seizures in the fall and winter compared to the spring and summer because there's a lack of serotonin this time of the yr.
As crazy as it may sound I found that eating peanuts helped reduce my seizures because they have progestone oil in them so if you like any type of nuts give them a try and see if it helps you.
You can also ask your Dr. to do a DNA test on you and this will show what meds will work for you the best with the least side effect or if you are drug resistant. I had this done a few yrs. ago and found I was drug resistant to all seizure meds out on the market so my neuro put me on CBD (medical marijuana) and I am amazed at how that has helped me out. To get the DNA test done all your Dr. has to do is draw some blood and get some salvia from you and send it to the lab. This will show the amount of enzymes in your liver along with your body chemistry and then they can match that up to the best seizure meds with the least side effects. I wish you the best of luck and May God Bless You!

Sue

 

[Nakamova]

I am moderately worried about how things will go when I get closer to my due date. My last pregnancy, I got sudden, severe preeclampsia at 35 weeks.

Have you had your serum magnesium levels tested? Low magnesium can cause both pre-eclampsia and seizures. Magnesium levels are known to decline in pregnant women -- if your mg levels were already low before the pregnancy, that could have been a secondary trigger for your seizure. (The primary trigger may be unknown, as for most of us).