Hi, Im new and need advice :)

[zada]

Hi there!
Im Dani, Im 25 and a mum of 3. Im living in Australia.
Ive been diagnosed with complex partial seizures even tho my EEG & MRI came back normal.
I had my first seizure back when I was pregnant at the start of the year. Since then I had one on 26th April, 26th May & 26th June.
Does anyone else suffer seizures on the same day of every month?
They are all at around 3am too when Im sleeping.
I have no memory of the seizures until I wake up with my partner there telling me. And of course I wake feeling sick and with a headache and sore muscles for the day.
I was offered medication but decided against it as the side effects seemed way worse than a seizure once a month! And especially when my test results showed nothing.
Dani

 

[epileric]

Welcome Dani

Are your seizures in time with your menstrual cycle or just on the same day every month?

I've got to say you are lucky to have someone who can tell you what's happened since you don't remember.

In my opinion I think that if you're not going to use medications to control them you should keep a close watch for any changes and be aware if they get better but especially if they get worse. It might get to a point where it is worth it to you to try a medication. Also remember everyone reacts to medications differently so you may get extreme side-effects or you may not get any at all.

You also might be interested in some of the alternative treatments that other people have tried. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments. I personally am partial to the neurofeedback option even though I haven't tried it yet.

 

[zada]

Im not sure with mestrual cycle as I havent got mine back after having my daughter 4.5 months ago but I did think of that.
Ill have a read thanks for that link too

 

[Nakamova]

Hi zada, welcome!

I totally understand your reluctance to go on meds -- the side effects are definitely no fun. But if your seizures start to escalate, then it's worth considering meds or other treatments. You don't want the brain to get in the habit of seizing, as it tends to lower your overall seizure threshold and makes seizing more likely in the future. The negative EEG and MRI don't rule anything unfortunately. Complex partials especially seem less likely to show up on the tests.

My guess is that your pregnancy was the initial seizure trigger. Often, shifting estrogen levels can mess with the brain. Even if you aren't having your period, the levels are probably still out of whack. You might want to ask your doc about "catamenial epilepsy" and ask about treatment with progesterone.

Another non-med approach is neurofeedback. I think another one of our Aussie mebers was trying that, so it's possible you can find a practitioner.

Best,
Nakamova

 

[PhylisFeinerJohnson]

This comes from epilepsy.com: "The best way of establishing whether the patient's seizures tend to worsen at certain points of the menstrual cycle is to have her keep a careful seizure diary in relation to her menstrual cycle. Using the first day of menstrual bleeding as the first day of the cycle, the menstrual cycle is divided into four phases:

menstrual, days -3 to +3
follicular, days +4 to +9
ovulatory, days +10 to +16
luteal, days +17 to -4
The number of seizures in each phase is counted. The average daily number of seizures for each menstrual phase is then compared with the average daily number of seizures for the rest of the cycle to look for a pattern of exacerbation or remission at certain phases of the menstrual cycle. A useful definition of seizure exacerbation is a twofold or greater increase in average daily seizure frequency during the affected part of the cycle in comparison to the remainder of the cycle.

If a catamenial pattern of seizure exacerbation is established from this record, additional steps in the evaluation will help to guide treatment." For more information (like about treatment) go to: http://professionals.epilepsy.com/page/catamenial_eval.html

 

[zada]

wow thanks for the info, lots to read into!
I wasnt entirely happy with the neurologist I seen, he seemed to not give out much info. Basically we left with him telling me not to drive and his answer was medication but couldnt say exactly why if that makes sense.
If I end up having a few more Im thinking Ill go travel to Melbourne to see a different specialist, living in the country gives limited options

 

[PhylisFeinerJohnson]

Doctor "rules", from one of my website articles:

Be persistent in asking your questions until you fully understand the explanation. If you don’t understand a diagnosis or treatment, ask more questions — take more notes.

Make sure you understand the script and what the drug does and doesn't do. Reasons for prescribing, upside AND downside. And whether name brand or generic will make a difference to your condition. And make sure you know exactly what the doctor wants you to do before you leave the office.

Ask about follow-up and get a contact number so if you happen to think of more questions, or forgot something the doctor told you, you can call the office immediately and request the information.

And if the doctor gives you the bum’s rush, or doesn’t respond to your questions, don’t hesitate to ask for a second opinion or else find another doctor who will work with you and care.

So I guess it's time for a new doc, eh?

 

[epileric]

I wasnt entirely happy with the neurologist I seen, he seemed to not give out much info. Basically we left with him telling me not to drive and his answer was medication but couldnt say exactly why if that makes sense.

I wonder why so many neurologists in so many countries have those same or similar characteristics.

 

[Endless]

Hi, Dani,

Welcome to CWE!

It's not unusual for test results to show nothing. Up to 40% of all people diagnosed with epilepsy that have partial seizures have negative test results.

Your doctor said you have complex partial seizures? The headache makes sense - I have postictal (after seizure) headaches, too. Did your doctor say where in the brain he thinks the seizures are coming from?

It's also normal for you to have seizures at night. Depending on where in the brain the seizures are occuring, nighttime might be the most typical time for them to be occuring. About half my simple partial seizures happen at night.

I agree with phyllis. Maybe time for a new doc? Or, you also have the option of taking your husband with you to the appointments, and ask him to play the role of being the stern one, and insisting on answers for you if you aren't able to.

Do write out your questions in advance and prioritize them, so it's easier to remember. Prioritizing is important. I dont' know how things are done in Australia, but here in the U.S. follow-up appointments with neurologists are usually 20 minutes long. So there is only so much time. The things we aren't able to get to in 20 minutes have to wait until next time.

Will you let us know how you are doing?

 

[zada]

Thanks for the replies! Very helpful
My Partner does come with me to the appts since hes really the only one who knows what happens. Hes more stern than me also.
My cycle returned today so now Im not sure if it has anything to do with that now. We are going to wait and see what happens next month then maybe try find a neurologist who's answer is not medication first up.

 

[PhylisFeinerJohnson]

Are you keeping a daily epilepsy diary? If not, keep track of your sleeping patterns, what you eat, your activities, your menstrual cycles, how you feel before, during and after a seizure (if you can remember.) This MIGHT help you identify additional triggers. And it also might give your NEW doc a clue. (Hopefully, he'll be less clueless.)

Also, I forgot to say: list your questions by priority -- from most important to least.

Good luck!

 

[sandi]

nights

I would just ask that if you are NOT going to try medication at this time , that you have an Emergency med on hand in case things would go out of control.
You are not aware , but hubby is .He could give it. There have been cases where pregnancy lowered threshold and hormones are responsible . I'd keep track with a diary as suggested.

 

[zada]

this neurofeedback, is that just an EEG?

 

[epileric]

Hope this gives you a better idea of what NFB is:

http://www.coping-with-epilepsy.com/index.php?p=eeg-neurofeedback

 

[douglas]

Hi Zada. Welcome to the forums.

I used to average about one GM seizure per year, though, unlike you, my seizures did not occur at such regular and predicted days and times. I have also had numerous MRI's and EEG and have had nothing show up.

I was offered medication but decided against it as the side effects seemed way worse than a seizure once a month! And especially when my test results showed nothing.

Yes, I can completely relate with the above statement. I feel the same was as you do about it. But I take the meds because if the seizure occurs at a very bad time, you could wind up getting really badly injured or even die.

If you feel very confident that you can predict the seizures the way you claim, then I guess you can take precautionary measures to protect yourself. However, my gut feeling is that if you run that theory by a real neuro, it might not fly well.

You state you are 25, you have little kids, and you get the seizures at 3am. You might want to consider starting a journal, if you haven't done so already, and start recording how much sleep you get and at what time you go to bed. A lack of sleep will aggrivate a seizure condition. Also, seizures have been known to strike right around the period when the body is falling asleep.

Best of luck and take care.

 

[RobinN]

It sure sounds like it is hormonal. I think your body is still on a biological clock, that is how it knew when to have the baby. Even though your menses havent begun again, your system is still regulated and hormones are ultra sensitive especially around pregnancy.

I also agree ( after trying four meds with my daughter) that an occasional seizure was far better than what occurs while on meds, and the long term side effects to them. We are controlling my daughters by making nutritional changes, and making sure she is getting proper vitamins and minerals daily. It has been apparent to me that diet and hormones put her body over her seizure threshold each month. She is doing quite well after I finally figured this out.

A journal (i use a blank calendar) has been beneficial to me in figureing this out.

 

[CharlesB]

Hi there!
Im Dani, Im 25 and a mum of 3. Im living in Australia.
Ive been diagnosed with complex partial seizures even tho my EEG & MRI came back normal.
I had my first seizure back when I was pregnant at the start of the year. Since then I had one on 26th April, 26th May & 26th June.
Does anyone else suffer seizures on the same day of every month?
They are all at around 3am too when Im sleeping.
I have no memory of the seizures until I wake up with my partner there telling me. And of course I wake feeling sick and with a headache and sore muscles for the day.
I was offered medication but decided against it as the side effects seemed way worse than a seizure once a month! And especially when my test results showed nothing.
Dani

Hi. Dear God, Miss Dani, I'm crying as I type this. I have been so scared to post. Just knowing that you are out there, thank you for having the courage to post. Later on I will gather up my courage and post my story. Thank you for posting. You are not alone.

 

[douglas]

Hi. Dear God, Miss Dani, I'm crying as I type this. I have been so scared to post. Just knowing that you are out there, thank you for having the courage to post. Later on I will gather up my courage and post my story. Thank you for posting. You are not alone.

Don't be scared to post. Don't be scared of seizures or of this condition. It's much more common than you think. It is manageable and it's all going to work out fine.

It's a little scary in the beginning because it's unexpected, you know very little about the condition, and more importantly, you know very little about yourself in relation to this condition. But it gets easier you become wiser about seizure conditions.

My condition came upon me at 29. I went from being completely normal to having a seizure condition; well, at least that's what I thought at the beginning. But after multiple visits to neuro, and also changing a few neuro in the process, I started to think about what they were telling me, and I started to think back to events in my past. And I realized I was actually having partials for a very long time but didn't know any better to do anything about them and no one around me knew any better either.

Anyways, take your meds, take very good care of yourself, take what you read on the Internet with a heavy grain of salt, and take comfort if sharing stories and discussing with others who have similar stories. Its very good for the soul and sanity.

 

[zada]

Look forward to your story Charlie

 

[daisy.girl]

welcome zada...
just curious, what does your partner 'see' happen during your 3AM seizure? Do you do the same thing each time?
I too understand the headaches!!