Hello, newly diagnosed

[Ellesnzeebs]

Hi, my name is Kayla and I was recently diagnosed with epilepsy. I am 25, married and work at a hospital in the Emergency Department. I have a long history of having migraines. Occasionally I would pass out from the pain and neurologists previously had told me that sometimes that's just how people reacted to migraines. That was back in 2011. In addition to having migraines, I also have endometriosis and generalized anxiety disorder. I've also had trouble with ovarian cysts and a severe milk allergy which actually has improved since being pregnant, so that's one good thing that came out of that.

Flash forward to April 2015. I had a miscarriage and shortly after I had these weird fainting spells. The first one i was on the couch petting my dog and stood up to get something from the kitchen. Next thing I know I'm on the floor with a sore wrist from falling. Then the headache kicked in. I felt confused and had trouble forming words but mostly I was scared because I was alone and had no idea what just happened. This happened a couple more times and my doctor ordered a CT (which came back normal) the day I saw the dr for those results I had another episode where my arm wouldn't stop twitching for about 20 minutes afterwards. I pushed for him to do further testing and an EEG was ordered. That showed seizure like activity and from there I was given keppra and a neuro appointment (which is coming up on the 16th). I also had an Mri that was mostly normal other than hemangiomas appearing but I don't know what that means. The only reason I know that is because my doctor has one of those "view your results online" systems and I read the radiology report.




It's tough. I'm scared often because even with the keppra I still have seizures. I can at least feel them coming on now so that helps. I don't even know what type of seizures I'm having which is annoying because I'd like to put a name to this feeling. I joined mostly to read others experiences and find support in sharing experiences with others who know what it feels like.

 

[Ruth]

Hi Kayla, welcome to CWE. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

Ask for a VEEG. That is a video EEG and shows up more. You will get a lot of support here.

 

[Ellesnzeebs]

Thanks Ruth! I was reading some of the other posts and you're right, there is a lot of love here. I look forward to getting to know you guys!

I will definitely mention that to my neuro on the 16th! Thanks!

 

[masterjen]

It could be that your Keppra is not at a high enough dose, that it is not the right medication for you, or that what you are experiencing is not seizure activity . . . who interpreted the EEG given you have not yet seen a neurologist? Family doctors rarely have the knowledge to interpret an EEG or choose a seizure medication - did yours consult one over the phone to get the results interpreted and find out which AED to try first? Keep a journal of your episodes, including how you feel before, after and during one, how long it lasted, time of day, what you were doing at the time you felt the "warning" or the episode itself if no warning. Try and identify any potential triggers for these episodes. Good luck and keep us posted!

 

[Ellesnzeebs]

I imagine that I am not on a high enough dose as well.
I should clarify. My PCP ordered the EEG which was interpreted by a neuro who I did see. However the office staff was incredibly disrespectful and many messages were left unanswered so I am seeing a new neurologist on the 16th that a coworker recommended to me. it's a shame because that doctor did seem friendly knowledgeable but there was just such a lack of communication and none of my questions were answered. I like to be well informed and have a lot of questions so i knew that just wasn't the place for me.

I definitely will do that! Thanks for the suggestion!

 

[Nakamova]

Hi Kayla --

Welcome to CWE! I hope your next neuro appt. goes well. It can help to write down all the questions you have and/or bring someone with you to the appointment to make sure you don't leave before getting satisfactory answers. You might want to ask about catamenial epilepsy (where one of the significant seizure triggers is hormonal spikes -- high estrogen and low progesterone), given the proximity of your recent episodes to the miscarriage.

Best,
Nakamova

 

[AlohaBird]

I have a long history of having migraines. I've also had trouble with ovarian cysts and a severe milk allergy which actually has improved since being pregnant, so that's one good thing that came out of that.

Flash forward to April 2015. I had a miscarriage and shortly after I had these weird fainting spells.
I also had an Mri that was mostly normal other than hemangiomas appearing but I don't know what that means.

Migraines and epilepsy have often been described as "kissing cousins".
I would suggest taking a google at the G.A.R.D. protocol of Dr. John Symes. He advocates getting rid of all cow milk products due to their high glutamate content. Even if the milk is not causing as much GI upset, it still could be a factor in your neurological problems.

Hemangiomas are abnormal overgrowths of blood vessels. This could be not a big deal or a seriously big deal depending on where and how large. Back your neurologist up against a wall and demand some more complete answers.

I would also suggest seeing an endocrinology specialist. Between PCOS and a miscarriage, it seems to me that there is a large hormonal aspect to your troubles.

I wish you healing and peace.

 

[valeriedl]

I've had epilepsy since I was 27, 13 years.

After many of my seizures I get horrible migraines and I know many other people do too. Mine are so bad at times that there is nothing I can do except wait for it to go away.

It's tough. I'm scared often because even with the keppra I still have seizures. I can at least feel them coming on now so that helps. I don't even know what type of seizures I'm having which is annoying because I'd like to put a name to this feeling. I joined mostly to read others experiences and find support in sharing experiences with others who know what it feels like.

Sometimes the first med that you are put on may not work. Sometimes you may have to take more than one med too because just one med won't help. Even though you are taking meds doesn't mean that your seizures will totally stop your seizures either. I had tried a good bit of different meds and the one's that I'm on now have lessened the number of seizures I have a month and they aren't nearly as bad as they were at first.

 

[Ellesnzeebs]

Thanks everyone for your kind words and advice. I am making a list of questions and things to bring up at my appointment. Thanks so so much

 

[Pinkattitude]

Hi Kayla!
Wow, you're in a lot of change now. I just had a video EEG, and it was very enlightening. They kept referring to a seizure I had during dinner one night until I interupted and said, "Wait! I had a seizure during dinner??" Since I didn't spill anything and there wasn't anyone else in the room then, I had no idea! With mine I just disappear out of my body while my body continues to function. I wave my arms, mostly. Looks like I'm shooing something away from me. And I'm "out of it" for 1/2 minute or so, plus the time it takes to fully come back to consciousness.

So if i was just trying to keep track of my seizures by myself, I would have missed that one. Thus, the video-taping is handy.

Oh, I took my whole computer with me to the hospital. They were going to sleep deprive me, and the only sure way I know to stay awake is to play my online games. So I recommend it!

Keep us posted on how you're doing!