I was hit by a car five years ago. I broke my neck and back and received head injuries that has caused me to develop epilepsy. I also have serious non epileptic seizures. I know when they are coming and they are really bad. I end up in the emergency room and intensive care a whole lot. I was just there two weeks ago. I am on three different drugs. They give some control. But this has wreaked my life and memory. They are getting worse and I don't know what to do. How does anyone cope with these scary things?
Hi I am new here and I sure am scared
- Thread starter rich7292
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skillefer
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Hi rich! Welcome to CWE. You ask how we cope.... (and this is just my opinion) honestly, because we have no other choice. I take that back...we have two choices. Learn to cope, or let the seizures rule our lives. Many of us choose to learn to cope. We change our lifestyles to give our meds the best chance of working that we can. We learn new routines and build support systems made of friends and families. We learn everything we can about our condition and what we can do to help ourselves. The other option is let seizures rule our lives and to slide down the slippery slope of depression and helplessness. Many of us have chosed to take a proactive approach. We start developing the attitude of "I am NOT my epilepsy. I am NOT defined by my epilepsy." Because honestly, you arent. Try thinking of epilepsy this way...like diabetes...a medical condition to be dealt with. Then, start learning about your condition, and how best to help yourself. Many of us find that the following lifestyle changes help.
1. Eat 6 small healthy meals a day ( By healthy I mean for every carb a protein, stay away from junk food and fast food, no MSG, stay away from artificial sweeteners and preservatives if you can, and by small I mean it should fit on a dessert or salad plate. This will help you keep your blood sugar levels steady. Because yes, shifts in blood sugar can trigger seizures.)
2. Get 7 hours of sleep everynight (minimum). (Sleep deprivation is a major trigger for seizures in many of us.)
3. Adopt healthy ways of dealing with stress. (Exercise, painting, writing, prayer, meditation, etc...)
4. Stay away from caffeine ( No sodas, tea, coffee, energy drinks, etc... Caffeine is a stimulant. Stimulants can trigger seizures.)
5. Stay away from OTC cold meds (especially antihistamines and decongestants...they can trigger seizures.)
6. Limit your alcohol consumption. (Alcohol and meds are a deadly combination.)
7. If you've been prescribed meds, take them as directed. Don't just quit because you want to or because you don't think they are working or because you think the seizures are all gone. Quitting meds cold turkey, or skipping doses can trigger seizures.
And finally, be honest with your doctor. They can only go by the information you give them. If you aren't totally honest with them, then they can't give you the best care possible.
1. Eat 6 small healthy meals a day ( By healthy I mean for every carb a protein, stay away from junk food and fast food, no MSG, stay away from artificial sweeteners and preservatives if you can, and by small I mean it should fit on a dessert or salad plate. This will help you keep your blood sugar levels steady. Because yes, shifts in blood sugar can trigger seizures.)
2. Get 7 hours of sleep everynight (minimum). (Sleep deprivation is a major trigger for seizures in many of us.)
3. Adopt healthy ways of dealing with stress. (Exercise, painting, writing, prayer, meditation, etc...)
4. Stay away from caffeine ( No sodas, tea, coffee, energy drinks, etc... Caffeine is a stimulant. Stimulants can trigger seizures.)
5. Stay away from OTC cold meds (especially antihistamines and decongestants...they can trigger seizures.)
6. Limit your alcohol consumption. (Alcohol and meds are a deadly combination.)
7. If you've been prescribed meds, take them as directed. Don't just quit because you want to or because you don't think they are working or because you think the seizures are all gone. Quitting meds cold turkey, or skipping doses can trigger seizures.
And finally, be honest with your doctor. They can only go by the information you give them. If you aren't totally honest with them, then they can't give you the best care possible.
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thank you for your advise skillefer
I appreciate just the fact that you know how this affects people and you know how horrible it is. Unfortunately for me they have tried just about everything. I get some relief from the 3 medications they have me on. The accident I was in damaged my brain stem. My body can not control regulation of basic functions like blood pressure and heart rate and temperature. The seizures come just about every day and sometimes several times a day. They come when I am awake and asleep. The hospital is like another home now. They have to use several doses of ativan to stop them a lot of times. I am getting pretty desperate at this point. With me because of the brain damage I have gone into respiratory and cardiac arrest several times during seizures. And you know how scary it is and hard to cope just with the lose of memory when you come out of them. Most of the time I have complete amnesia and have no clue where I am. I thank you for the support. And believe me when it gets bad for you I am there to help anyway I can.
I appreciate just the fact that you know how this affects people and you know how horrible it is. Unfortunately for me they have tried just about everything. I get some relief from the 3 medications they have me on. The accident I was in damaged my brain stem. My body can not control regulation of basic functions like blood pressure and heart rate and temperature. The seizures come just about every day and sometimes several times a day. They come when I am awake and asleep. The hospital is like another home now. They have to use several doses of ativan to stop them a lot of times. I am getting pretty desperate at this point. With me because of the brain damage I have gone into respiratory and cardiac arrest several times during seizures. And you know how scary it is and hard to cope just with the lose of memory when you come out of them. Most of the time I have complete amnesia and have no clue where I am. I thank you for the support. And believe me when it gets bad for you I am there to help anyway I can.
RobinN
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Hi Rich - I am not sure where you are located, but I would suggest that you look into Neurofeedback. My daughter has been doing it, and it has helped in many different ways. In the hands of a skilled practitioner, they can work around damaged areas of the brain and train the healthy areas to stabilize brain function. We were actually given a prescription for it from USC-Neurology. You might ask your doctor if you can give it a trial run. It improved my daughters quality of life quite a lot. Her cognitive abilities improved, as did her memory. She has had terrible memory / amnesia episodes. Now that her seizure control is improving, I see less issues with memory problems.
NFB can also help regulate blood pressuren heart rate, and temperature. It is interesting therapy.
You might check out this website of the office that we use:
www.eeginstitute.com
NFB can also help regulate blood pressuren heart rate, and temperature. It is interesting therapy.
You might check out this website of the office that we use:
www.eeginstitute.com
RobinN
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This is awesome therapy. Doesn't hurt. Think of it more like exercise for the brain. Again ...they can train it to work around the injured areas. If you find a practitioner from the EEG Spectrum listings, they give a 10% discount to CWE members. It helped us out.
You know,
Skilly IS right. You can either let E rule our lives, or learn to cope. Personally, I have found that learning to cope is much better.
I have had E for 44 years now, and my E is well-controlled NOW--even though I have 4 different kinds. BUT, I have gone through some really dark periods where it was not, and I was Mom to 3 young kids at the time. I finally sat down one day and decided that I was going to take the bull by the horns, and do something about it.
I started keeping a journal of EVERYTHING. Sleep, eating, video game/TV/computer usage time. Menses, you name it, I was tracking it. And I found some interesting things. Once I found those, I was able to make some adaptations on my own, and the doctor's jaw just dropped. From there I tracked the meds even more and they were adjusted/changed.
Using calming, meditational CDs as well as yoga is another thing that I do and have done in the past too, to help myself. Even if you can't do the yoga, the CDs are easy to listen to...
Robin's neurofeedback information is verrrrry valuable. Her daughter has made SIGNIFICANT progress using it. So Robin DOES know what she is talking about when she recommends it.
PLEASE keep your head up, Rich. There is hope. I know that you've spent an awful lot of time in hospitals, and for that, I'm eternally sorry.
I wish you luck.....
Meetz
:rock:
Skilly IS right. You can either let E rule our lives, or learn to cope. Personally, I have found that learning to cope is much better.
I have had E for 44 years now, and my E is well-controlled NOW--even though I have 4 different kinds. BUT, I have gone through some really dark periods where it was not, and I was Mom to 3 young kids at the time. I finally sat down one day and decided that I was going to take the bull by the horns, and do something about it.
I started keeping a journal of EVERYTHING. Sleep, eating, video game/TV/computer usage time. Menses, you name it, I was tracking it. And I found some interesting things. Once I found those, I was able to make some adaptations on my own, and the doctor's jaw just dropped. From there I tracked the meds even more and they were adjusted/changed.
Using calming, meditational CDs as well as yoga is another thing that I do and have done in the past too, to help myself. Even if you can't do the yoga, the CDs are easy to listen to...
Robin's neurofeedback information is verrrrry valuable. Her daughter has made SIGNIFICANT progress using it. So Robin DOES know what she is talking about when she recommends it.
PLEASE keep your head up, Rich. There is hope. I know that you've spent an awful lot of time in hospitals, and for that, I'm eternally sorry.
I wish you luck.....
Meetz
:rock:
BuckeyeFan
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:cheers:
Welcome Rich. Come on in and stay awhile. This is a great place to visit and even better to make into a home away from home. We discuss just about every aspect of E here. So browse around and feel free to join any of the conversations or simply read them.
I am not personally familiar with NFB like RobinN, but with your brain stem issues, it sounds like it worth the try. Good Luck!
:cheers:
Welcome Rich. Come on in and stay awhile. This is a great place to visit and even better to make into a home away from home. We discuss just about every aspect of E here. So browse around and feel free to join any of the conversations or simply read them.
I am not personally familiar with NFB like RobinN, but with your brain stem issues, it sounds like it worth the try. Good Luck!
:cheers:
Well I have to admit you were lucky to have some years of normal life I developed epilesy when I was three years old at a high fever so I have never had a normal life. I have never been able to say that I was totally healthy at any time in my life. I have to say that all my life some time or another I know that I will have an aura sometime and a seizure I don't think they will ever be ever to stop them totally. So I just keep myself as healthy as I can otherwise and hope to God that my seizures don't come as often. I have found out that ASPARTAME AND SPLENDA are not good for you put equal on an ant trail and you will see that they hate it. If they don't like it and die from it what is it doing to you. Pamela Roosma
alivenwell
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Welcome to CWE! Would you really want to be 'normal' ? I am definitely off the charts there. Personally, I find stress a huge factor. And, I stay as busy as possible to keep a good mindset and positive attitude. Epilepsy just give a person a new 'normal'.
Although driving could be fun, I play piano and study whatever interests me. A good long walk with my dog or fun play session with her is a great stress buster. And, I'm not proving a huge amount of my income to gasoline companies. I'd rather take public transportation.
Although driving could be fun, I play piano and study whatever interests me. A good long walk with my dog or fun play session with her is a great stress buster. And, I'm not proving a huge amount of my income to gasoline companies. I'd rather take public transportation.