Help !!!

[ladybirdfish]

Hi,
I'm 22 and from Ireland and found this place when I was looking for some help.
I have only recently been diagnosed with epilepsy but the whole situation is very confusing so I don't really know anything and Ireland doesn't have a good support system for epilepsy. I will try and explain my situation and hopefully someone will be able to give me some advice.
I first knew something was wrong in September 2017 when I began to get numbness in my hand that would last for around 5-10 seconds and then would go, that lasted for about a week. Then I got the numbness in my hand which spread down my right side to my knee and turned into a pain in my knee. This sent me to the hospital. The doctors Thought at the time that it was a pulled muscle and sent me home. Two days later I had what I class as my first seizure, I was in the kitchen making tea and the next thing I know I'm on the floor staring at the ceiling, My mum told me that it lasted a minute. I went back to the hospital and they did numerous tests and told me they were transferring me to a hospital in Dublin so I would see a Neurologist , at this point I was having 14 -15 seizures a day .The neurologist put me on Keppra and phenytoin. I was in hospital for 3 weeks before they sent me home and telling me it was epilepsy, focal seizures.
Then the next time I saw my neurologist he told me he was taking me of the phenytoin as the medication had only brought it down to 5 and he wanted to get rid of it completely. From that day I have been back to having up to 18 at most seizures a day and have tried 9 different types of medications. My neurologist sent me to a psycho neurologist because he told me he believed that I did not have epilepsy as the medication should have worked.
After seeing the psycho neurologist she sent me back to my neurologist as there was nothing psychologically wrong with me. At this point I decided to get a second opinion and went to a different neurologist who referred me to a epilepsy monitoring unit. After being there for 3 nights I was told I have generalized epilepsy but my seizures look like focal seizures which makes it slightly unusual but nothing to be worried about and they referred me to a epilepsy professor to be my new doctor.
Now after all of that and because I am still having seizures my dad is very stressed. He panics when I get up to walk around the house or make a cup of tea or even have a shower and its caused some major tension. As much as I try to be chill about the whole situation it really has changed my life and as bad as I feel saying it the last thing I need is my dad constantly reminding me about it as well. How do I get my dad to calm down so I can get some peace because the way things are now I actually hate being in the same room as him and my dad and I are like best friends.
Also do certain diets or meditations help with seizures ?
Can I go to the dentist while I'm still having seizure's ?
Exercises that I can do as I fall during a seizure?
Any general information as I got told literally nothing
:hugs::e:

 

[Sabbo]

Hello & welcome to CWE. The medication(s) that will work for you will depend on the type of seizure that you are having. I have simple & complex partial seizures, & take Topamax & Zonegran, but still get breakthroughs. I have taken almost every AED out there for these types of seizures. I'm allergic to a bunch of them, and others just didn't work or would for a short time, then breakthroughs started again.
You can go to the dentist--just inform them that you have epilepsy, & tell them which medications you are taking.

 

[Porkette]

Hi ladybirdfish,

Welcome to the forum! I've had epilepsy for 46 yrs. and just like you I've been on over 10 different seizure meds and they never stopped my seizures so my Epileptologist who is a Dr. who specializes in epilepsy did a DNA test on me by drawing blood and wiping the inside of my mouth with a Q-tip, all of this was sent to the lab and they could see the amount of enzymes that were in my liver along with my body chemistry and it was then my Epileptologist found out I was drug resistant to all seizure meds out on the market right now so I was put on the medical marijuana (cbd oil) and I was amazed at how I went from 300 seizures a yr. down to 68 seizures and this yr. it's even lower as of today Nov. 7th, 48 seizures.
You can go on the ketogenic diet which is a diet that helps reduce seizures the diet is high in fat and protein but low in carbs and starch foods. You don't gain weight on the diet at least I didn't because you burn the fat off for energy instead of the sugar. Also stay away from to much caffeine and anything with aspartame (nutra sweet) can often trigger seizures for some people. Just recently it was proven that cell phones can trigger seizures for some people also because the person may be sensitive the frequency the cell phone uses and in turn it triggers seizures this is what happened to me. Start keeping track on a calendar of what type of seizure you have and what time of day or night you have the seizure and right it down. Often seizures happen when hormones are changing, a low pressure in the weather, or lack of sleep and stress. I wish you the best of luck and May God Bless You!

Sue

 

[valeriedl]

Now after all of that and because I am still having seizures my dad is very stressed. He panics when I get up to walk around the house or make a cup of tea or even have a shower and its caused some major tension. As much as I try to be chill about the whole situation it really has changed my life and as bad as I feel saying it the last thing I need is my dad constantly reminding me about it as well. How do I get my dad to calm down so I can get some peace because the way things are now I actually hate being in the same room as him and my dad and I are like best friends.

I was diagnosed with epilepsy 13 years ago when I was 27. Before I was diagnosed with epilepsy I was living on my own but then I had to move back home. I was having too many seizures, I can't even give you an estimate, every day/month and I just couldn't live on my own in general.

When I moved back home I was treated like I was 5 again. I don't think my parents let me out of their sight, my mom was worse than my dad though. There were so many things that they just didn't want me to do. If I went up or down the stairs someone had to be in front and behind me in case I'd fall. I couldn't go outside by myself. If we went to the grocery store I had to hold onto the buggy, if I would have fit in the children't seat I know they'd put me in there!

It took them a few years, and it went slowly, that when they learned more about epilepsy and understand what was going on that I was finally treated like an adult again. I'll never forget when it happened either - I went shopping at the mall with my dad and he told me to go ahead and shop by myself and he'd wait in the food court. I had to call him every so often on my cell phone just to make sure I was ok (I could live with that) but it was just so wonderful to finally be left alone!

Also do certain diets or meditations help with seizures ?

You may have to try several different meds before find one that helps/work with the seizures. Everyone is different so there isn't just one that works for everyone. I had to try a lot of different meds/dosages before I found some that helped but I'm still having seizures, not nearly as many as I at first though.
As far as diets go I don't know of any. Just be aware that some meds can make you loose or gain weight.

Can I go to the dentist while I'm still having seizure's ?

I never had any problems going to the dentist, just make sure he know's that you have epilepsy. I had my wisdom teeth removed with no problems.

Exercises that I can do as I fall during a seizure?

I'm guessing that you fall during your seizures? If you feel a seizure coming on then sit down. Don't look for a chair just sit down on the ground. As far as exercises go I don't know of any.

I hope I was able to give you some help and information. It's nice to meet you!!!

 

[Nakamova]

Hey ladybirdfish, welcome to CWE!

An epilepsy diagnosis can be scary and confusing -- not just for you, but for the folks around you, as you've discovered. Your dad's [over]reaction is frustrating but not unusual. If he's open to learning more about epilepsy that will help. And if you can have a frank conversation with him about living your own life, that might get through to him as well.

One of the ways to cope with epilepsy is to try to keep it from dominating or defining your life. It's also important to minimize stress. So you let your dad know that his constant monitoring may be making your health worse rather than better...

Finding a successful treatment for epilepsy is different for everyone, and can be tricky when neurologists give you mixed messages or none at all. (One CWE member, Fedup, lives in Ireland, and he would be verrrry sympathetic to the runaround you got from the doctors). There are diets that can help with treatment, but you should be careful before starting anything extreme like the ketogenic diet -- it's not a diet you should do without supervision from a dietician or nutritionist. You can read a bit more about dietary approaches here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies

It can be helpful to keep a journal tracking your symptoms/seizures -- when they happen, what happens, how long they last, what you were doing in the hours before, etc. A journal can potentially help you identify and avoid things that play a role in triggering your seizures. Triggers can be physical, physiological, emotional, and environmental. They can be things like fatigue or hormones or low blood sugar or having an infection. You can read more about tracking triggers here: https://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

You're doing the right thing by asking a lot of questions. CWE is a great place to ask them -- you'll get a lot great advice and support here -- but keep in mind that what works for one person won't necessarily work for another, and you should with proceed with caution when considering a treatment path. If possible keep your doctors in the loop.

Best of luck,
Nak

 

[ladybirdfish]

Thank you so much for your help and advice