New to Epilepsy & This Forum

[Sarah Sey]

Hello everyone!

Some background on me:
I am 21 years old, a female, an undergraduate student and I live in Ontario, Canada.

In around November of 2015 I experienced some moments of forgetfulness - where I would forget where I was completely. It would happen for about 3-5 seconds and then I would be fine.

This happened about 2-times and then the third time, I was driving and I turned a corner and ran over a curb. This seemed to happen suddenly and I felt I was not prepared for it.

After this happened, my family doctor referred me to a neurologist, who ran EEG scans as well as an MRI on me.

Keeping in mind that nothing like this has ever happened before - I was really surprised and upset to hear that my EEG came back abnormal.

My neurologist said something about the fact that my left brain side was abnormal and unequal to my right brain? I didn't really understand what he was saying because at this point I was just overwhelmed with emotions.

My MRI also came back with something - my doctor mumbled this but said something about a weird cluster in my brain. He said to come back in June (6th to be exact) to take another MRI to see if this has developed more or not.

Since the beginning of February 2016, I have been taking Keppra and my doctor originally put me on 1000mg (500mg in the morning and 500mg in the evening). It made me so dizzy and tired that I was unable to function (during the day and at night I would just pass out).

I tried taking this for a week before I couldn't even eat or stand and called my doctor. He then told me to try taking 500mg in the evening with food and I've been coping with that ever since.

I have a follow up appointment with my neurologist at the end of April and I have been trying to get it moved up earlier because I don't think Keppra is working very well for me.

The medicine makes my emotions fluctuate so much, I'm so depressed and happy and hyper and angry and upset all at one time... It is horrible.

I can't control my emotions at all, and I also have no appetite at all. I've probably lost around 5-8 pounds in the past month.

I'm an active weight lifter, and going to the gym has created an atmosphere and lifestyle for me to be more positive and strive to be an independently motivated person. Now, my workouts are horrible and I just find that I'm more depressed than ever.

My doctor said that I had partial on-set seizures, which I'm not really sure what that means?

I'm afraid that my MRI will reveal that I have a brain tumour and that I will need chemotherapy or surgery.
I'm afraid of everything and I've cried at least once a week since being diagnosed.

On top of everything, my neurologist took my driver's license away and this makes it hard for me to get to school (or anywhere for that matter) because I live out in the suburbs.

As well, I've been so stressed out and depressed worrying about my condition that I'm really behind and lost at school, and I am supposed to graduate in June of 2016.

Should I be getting a second opinion about my condition?
I don't want to be taking medication for the rest of my life - which is what my neurologist told me.

He said it will make pregnancy difficult because of the stress of seizures while pregnant, and that if I don't take these meds I won't be able to drive.

 

[Frink]

Hi Sarah.
Welcome to CWE.

Partial seizures start in a small area of one lobe in one hemisphere of the brain, if it spreads to the whole brain it would be called a secondary generalized seizure. Partial = part of brain, generalized = whole brain.

The loss of appetite from keppra should go away after about 3 months, at least the people I know who had keppra induced loss of appetite got better around the 3 month mark, sometimes it would return briefly during a medication increase.

Keppra and emotional issues particularly anger can go together. Also depending on where your partial seizures are coming from (temporal lobe???) seizure activity in the temporal lobe can cause anger, fear, depression, anxiety, happiness, laughter pretty much any emotion you can feel.

I wish you good luck.

Peace,
Frink

 

[Hobbes]

Odds are your MRI will be unremarkable or see something incidental (something that sounds concerning but does not explain the epilepsy). If it does see something, surgery may be a viable option. Pregnancy is more concerning with E but you'll want the neuro and ob docs to work with you before getting pregnant, doesn't sound like this current doc has the best bedside manner but you seemed to have retained a lot from the discussion. This is disturbing issue so it's going to take a while to process the impact on your life.

The doc that prescribed keppra to our child suggested taking extra B6. Some parents mention emotions improve ~6-8 weeks out. It is amazing at stopping seizures for a lot of people and it doesn't have bad interactions with other drugs like most seizure medications. Our child took it for two months and had an uncommon reaction that required stopping it.

 

[Gammaw]

Nice to meet you!!

:hello:
It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

You might want to ask your family Dr. to refer you to see a Epileptologist (Dr. specializing in epilepsy.) You can usually find an Epileptologist at a big hospital or a University hospital. These Drs. will do tests on a person and find the cause of the epilepsy, keep them on the least amount of sz. medicine, they are updated on any new treatments for epilepsy. From now on get a calendar and write down each time you feel a possible sz. write down what time it happened and a description, by doing this the neuro you see may see a pattern in the possible sz. I would also start taking vitamin B12 1000 mcg. once a day this will help calm the nerves and reduce sz. you can buy it right over the counter so you don't need a prescription.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Gammaw

 

[acshuman]

Cwe

WELCOME to CWE, Sarah

ACsHuman

 

[Topcat]

Hi and welcome to the Forum

 

[valeriedl]

Hi and welcome to CWE!

Keppra is one med that effects your emotions a good deal. People on it tend to get angry very easy. There's a nick name for it - Kepprage. I'm on Keppra and it doesn't take much to set me off.

If you don't think the meds are working for you then ask your neuro if he'll try something else. I went through many meds when I was first diagnosed with epilepsy. Some didn't work and some I couldn't deal with the side effects of. I may have slept all the time, didn't have any energy, ate a ton, not ate at all and the list goes on.

Luckily my neuro is a good one and I haven't wanted to change. However there are several other people who go to other neuros because the one that they are seeing just isn't the right one for them.

Loosing your license is a hard thing but in the long run it good not to be driving when you have epilepsy. If you have a seizure while you're behind the wheel you could wreck the car and kill yourself or someone else. As you can see for instance when you ran over the curb.

I live in the country with no public transportation or stores within walking distance. I have to work my schedule around others who are able to take me places. Is there anyone who goes to school with you that lives close? You could ask them to give you a ride with them. Offer them some gas money. Most people will say sure I'll give you a lift when you do that.

I hope you get a lot of help on CWE, I know I have!

 

[Music36]

Sarah,

I take 3,000 mg of Keppra and I've had Kepprages, but now I try to have better control since I had epilepsy surgery last year. Being diagnosed with epilepsy is a lot to absorb. It's important to educate yourself about epilepsy. For example, Epilepsy Foundation of America website has info. It's normal to be very emotional about the diagnosis. Time will help. Not being able to drive does make life more challenging, but you can still live a pretty normal life. I went through undergrad and grad school as a single-mother unable to drive. Some people will choose to live where there is an excellent public transit system. I've always had family and friends to drive me places and there's been times I've given people gas money. I've also used public transportation at times. You can still have children. They would put you on the safest meds to take during pregnancy. You'll be able to drive if your seizures get controlled with medication. There are many seizure meds and everyone is different so it can take trial and error to find the best med or combination of meds. As others mentioned, it takes time for the body to get used to the meds. It can take several months. It's also best not to start on too high a dosage and work your way up. Two of the biggest seizure triggers are lack of sleep and stress. Staying up all hours of the night can trigger seizures. It's important to have healthy ways to deal with stress (e.g., exercise, yoga, meditation, music, etc.) and not let yourself get stressed out. Alcoholic beverages can also trigger seizures. I was also diagnosed at age 21 and I had to change my lifestyle. I actually had complex partial and simple partial seizures all my life, but they were misdiagnosed until I had a tonic-clonic seizure at age 21. Intense fear is my aura and doctors just assumed they were anxiety attacks and never sent me to a neurologist.

 

[seagull]

Can you go to your GP get him to read all the results in plain English then referral someone else if not happy.Brain tumour unlikely he be doing something well before june