New Member

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Kamanu

New
Messages
3
Reaction score
0
Points
0
Hi
It is nice to finally share with people who can undersand what me and my wife are going through.she has been experiencing seizures for the last 2 years after our son passed away, he was born premature and only lived for 2 months.she only gets them at night and later gets headaches and sleeps for 6hours and is not in any medication because we are trying for another baby.she has undergone all the standard tests and are normal, is there anybody with the same symptoms?
 
Welcome to CWE! you are among friends who understand. Stress and lack of sleep are what causes my seizures. I only have sleep seizuresand mine are caused by stress and lack of sleep. It sounds as if your wife may be experiencing the same kind of epilepsy.

If I don't get enough slepp and am stressed I get incredible migraines which can only be stopped by sleep; but once I am asleep I go in to grand mal seizures. In the last 10 years I have been waking up prior to seizing and can usually scream and get someone to to "talk me out of" a seizure.

I also have sleep apnea. If the apnea is severe enough it can deprieve your brain of oxygen long enough to trigger a seizure.

I am sorry for your loss. The only way I was diagnosed was with a sleep deprieved eeg. the diagnosis of apnea was did not come until years later. Best of luck to you and your wife.

Take Care,
Carla
 
Kamanu - I am so sorry for your loss.
I have had three full birth pregnancies and one miscarriage. I think my hormones went haywire after that miscarriage. I certainly suffered from something. I certainly hope your wife can find ways to raise her threshold.

Magnesium helped me with my hormonal migraines. Are your wife's seizures connected to her cycle in any way? My daughers have been, yet they are also blood sugar related. We are controlling her tonic clonic seizures with nutritional changes.

I look forward to hearing your good news.
 
Thank you

Thank you for sharing your experiences with us. We are very greatfull since we are finding this information very helpful on our route to recovery.
I just wanted to ask what nutritional changes that we should try.

Thanks in advance hoping to hear from you.
 
For my daughter it has been helpful to eliminate wheat, dairy, soy and corn. Cheating has occurred and that is when we see seizures. Not immediately, but I do know that she has not been as stringent with her diet. It seems to accumulate.

Keeping sugars low, natural and un-natural ones. Low carbs, because they are converted to sugars in the digestive tract.

No additives, colorings, perservatives, HFCS, MSG, any of these hidden in names that look harmless. One needs have a keen eye and memory when it comes to these things that are hidden.

Omega 3's, magnesium, Vit D, enzymes if necessary, biotin, taurine, Vit B, (all should be researched of course to see if there is a possibility there is a deficiency) I however research the need, and then do a trial run, to see if there is improvement. Sometimes there isn't and it needs to be eliminated. Yet I have also learned that occasionally something needs to be healed prior so that the supplement can be better absorbed.

One must be a nutritionist, a chemist, lab technician, researcher with good intuition, ... there are more job titles, but I am forgetting them at this moment.

Ask questions... because my quote ---------v says it all
 
Thanks Robin
We will start on the nutrition right away.I also have an issue on incotinence( loss of bladder control when having the seizures which makes her depressed is there any thing we can do to avoid the occurance? And does the seizures cause fertility problems because we are trying hard and every time she gets her periods she gets depressed and the seizures increase
 
Thanks Robin
We will start on the nutrition right away.I also have an issue on incotinence( loss of bladder control when having the seizures which makes her depressed is there any thing we can do to avoid the occurance? And does the seizures cause fertility problems because we are trying hard and every time she gets her periods she gets depressed and the seizures increase
-----------------------
There's not really anything she can do about the issue of wetting herself. (Some people lose control at both ends, if you will.) After a seizure, when everything totally relaxes, is when this happens. It happens to me everytime I have a seizure. The best thing she can do is consider wearing adult diapers, or some form of waterproof pants (at least while in public), to avoid any embarassment. Let her weigh the decision based on how often she has seizures...if they're infrequent, it may better to just carry a change of clothes in the vehicle just in case. Wearing the waterproof undergarments, especially in hot weather, can be uncomfortable, and can cause heat rashes (I've been there). So if you do go that route, make sure you use some kind of moisture barrier cream.
 
Hi and

welcome to CWE, Kamanu! Sorry I haven't welcomed you before....*blushing*

I have been through 3 full term pregnancies and at least 3 miscarriages. There's a possibility that there were 2 more, but they would have been very early...

Anyway, for me, lack of sleep and stress are also big triggers. As well as my diet. (I have some serious food allergies.) I also use a combination of vitamins like the ones Robin talked about to help keep things in balance, but even then the doctor still hauled me in his office for a Vitamin D shot lost week, and a bottle of super Vitamin D pills YIPPEE.

Jf is right about the incontinence. Talk to your wife about how often it happens, and how often her seizures are occurring, and then decide whether or it would be worth it for her to follow some of those suggestions that Jf came up with (which were great suggestions).

Take care, and make sure you check out all the nooks and crannies of CWE.

Meetz
:rock:
 
I just thought, if you're strong willed you can just take the attitude of: "Yeah, I'm wet, so what? It's not my fault, it happens with seizures. Big deal...I've got more clothes. My pants would look the same way after giving the kids a bath!"
Being able to think this way to yourself will, at least, build up your self esteem and help in feeling less embarassed if it does happen again. (Works for me everytime!) Besides, you're not the first one the E.M.T.'s, Dr.'s, nurses, etc. have seen this happen to. They're not going to hold it against you. They understand this happens.
 
Back
Top Bottom