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Hi,

I am new on here and just wanted some advice my husband is waiting to have a mri brain scan next week due to his "episodes" he has been having. His driving licence has been suspended to tests done and he is so upset about this and now says his episodes has disappeared but suspect he is lying but still not driving. He says that it is not epilepsy. His episodes usually occur about 10 to 15 times a day and he does not lost conscious but shuts downs for up to 15 mins. He is aware of what is happening around him but feels like he is outside the situation and gets funny feeling in stomach. I only know these are happening because he stops talking and just stares but will nod if you talk to him. He also has numbness down his left arm and left leg and face which has been there for 7 weeks now and excessive saliva in his mouth which makes him swallow all the time. Does this sound like epilepsy to you the doctor is convinced these are fits?

Any advice would be so welcomed.

Many Thanks
Penny
 
Hi Penny - Welcome to CWE

I would say that they are something of concern, and it seems very appropriate that his license be suspended until his situation is stable. I hope that the MRI will bring you answers, but be aware that many times it won't. Many times an EEG won't either.

Call it Epilepsy, or fits... to me those are just words for an underlying condition that you need to figure out the answer. There are a large % of people that don't know why they are having seizures, but none the less they are and it certainly makes life more difficult.
Your doctor will hopefully be able to help you figure out what these are. Though I have found out, while treating my daughter, that most of the time it is as difficult for the doctor as well, and most rely on the prescription pad to by themselves time.

What I have come focus on, and this you don't hear in the doctors office... your husband is xx # of years old. Why was he seizure free for that many years, and he is just now experiencing them? What in his life is pushing his threshold down to allow seizures to take hold? Keep a journal or a calendar of events. It is extremely helpful in the understanding of what is occuring.

Your husband might be one of the lucky few that a simple pill will be an answer. For us it didn't work. The side effects were much worse. So right now my daughter is doing neurofeedback therapy twice a week, and it seems to have brought her seizures into better control. There are a lot of ideas here on alternative therapies, and I hope you both will consider some of them.

Be patient with your husband, it is a difficult time.
 
Dear Robin,

Thank you very much for your reply and very grateful for the information therein. My husband is 40 years of age and these started about 2 months ago. We keep a daily diary so when we saw the neurologist we had all the information he wanted and also I was able to describe the "episodes" to him because I had witnessed them. I have seen my husband so upset and he is usually such a strong person but this worry is getting him down but I am staying positive and being very patient when he forgets things and gets angry that he can't drive. Scan is next week so will keep you updated.

Once again many thanks
Penny
 
Yes it is a very trying time. It is as if they have lost a loved one. One of the triggers for seizures however is stress. So if nothing else he should take the time to work on lowering his level of it. There are also some great suggestions on nutritional changes. There are foods that trigger seizures as well. The body can react to certain chemicals in our food products. So going back to a clean, simple diet can be helpful for many. Also, making sure he is getting adequate rest is very important.

I have learned that we all are very close to experiencing a seizure. It takes just one too many triggers to push us over the edge. Lowering those triggers is extremely important.

Check out this, if you haven't already done so: http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/
 
Definite cause for concern

Welcome to CWE.

:cheers:

I hope you can find some useful information here, I know that you will find some good support.

Your husband's symptoms could be from a multitude of issues, not just epilepsy, though some of the conditions sound like Simple Partial Seizures. The left side issues trouble me the most and hopefully the testing can help diagnose this issue. It sounds like you are doing a good job of preparing yourself for the doctor.

NO driving is correct based on your descriptions. I have been there and know how difficult that can be, however it is not worth his risking his life.

:cheers:
 
Thank you!!

Hi,

Thank you both for your replies and I agree driving is not an option at the moment but with no driving comes no work and no work means no money so that could be adding a bit of stress but have assured him once we know what the problem is we will solve that issue so don't worry. The numbness is down the left side and he says that he feels like he is wearing a crash helmet well thats the sensation that he gets. The only way he describes his "episodes" is that a feeling washes all over him from the head down and also when he is in the sun or in a hot bath the numbness feels much more stronger. With no many different symptoms that is why he doubts he has epilepsy but like I said the doctor knows best and until we have proof otherwise he has to try to accept it for now. Your kindness is much appreciated and will keep you posted.

Many thanks
Penny
 
I would suggest no baths for the time being, unless you sit by the tub with him. There is an increased risk around bodies of water.

Do let his intuition play a part in your search for answers. In our experience, conventional medical doctors have made blanket statements that have not been true. They do not always know best, and one must get additional opinions to uncover the truths. I would have to suggest that at this point they do not know enough to be able to say for sure that it is X, Y or Z. The only thing that Epilepsy means is that he has had two or more seizures. It isn't an illness that has a single known cause. There are many reasons for seizure such as he is having. Could be oxygen related, could be an imbalance of electrolytes, could be .. ah, I could go on and on. You both have to dig, and keep digging. Know that it might take a while, so put on your work boots. Leave the boxing gloves home, because it is useless to spend your energy fighting the system. Keep uncovering and learning. That will be the best way to get you to your answers.

You must be your own advocate, and use your instincts.
 
Hi Penny! Welcome to CWE. :) The group is very friendly, and more than happy to answer any questions that we can. It's not surprising, your husband's response. After all, he's supposed to be the strong provider, and here he is, showing a sign of weakness. Continue to be patient. :) Feel free to ask any questions. Also, encourage your hubby to hop online and join us. Maybe when he sees for himself what epilepsy is, and what it isn't (It isn't an automatic death sentence... :) Some of us have multiple degrees and careers. :) ) he won't be so hesitant about the diagnosis. And as Robinn said, he may be one of the lucky ones, for whom one little pill does the trick. :) Again, welcome to CWE. :)
 
My heart goes out to you. It is really scary and frustrating during that "What's wrong with me?" phase.

I agree with Buckeye that these episodes sound like simple partial seizures. But it could also be lots of other different things. The episodes and the numbness could be related, but they may have nothing to do with each other. An MRI may not show anything. Mine showed a perfectly normal brain. I guess that's a good thing, because it means I don't have a brain tumor, but it brings me no closer to learning the cause of my seizures.

Remember that epilepsy is just a label to describe someone who has seizures. Sometimes doctors can find a cause, but many people (like me) have no idea why. I'm one of the "lucky" ones whose seizures are under control with medication with side effects that aren't bothering me too bad.

Don't get too scared. Lots of people have seizures (about 1 in 100, according to my Neurologist). It's not a death sentence, and it's nothing to be ashamed of. And, again, it could be lots of other things. My search for a diagnosis was a long process, so just be patient. Be honest with the doctors, ask lots of questions, and keep searching for answers until you are satisfied.

Best of luck to you. Let us know how things go.
 
Hi Penny, welcome to the forum. :hello:

I agree with BuckeyeFan that it sounds like simple partial seizures. Hopefully they are because I would think if they were "mini strokes" or TIAs, he would be in more danger.

Robin already mentioned the epilepsy 101 thread, but there are a few others that are good starting places for someone new to epilepsy.
 
Welcome -

It does sound like simple complex seizures, although you will not know until the testing is done. I'm sure he is upset because he is afraid of what this could be. He probably is thinking that this could be a number of things and trying to figure out how he would deal with each of them. Not knowing is the hardest thing and sometimes, we think the worst. Not being able to drive has just taken some of his independence away.
 
Hi,

I would like to thank everyone on here for all your messages and kind words sounds stupid but been living with this worry for a while now but one day on here and I feel better knowing that I can come on here and ask questions and receive support felt so alone because can not show my feelings in front of my husband at the moment being the strong one but on here I can let me feelings out. I spoke to him last night and explained I had been on a forum and he showed some interest so hopefully he will take the step and come on here himself when he knows what the problem is. He keeps a lot away from me but confessed last night he is having problems with speech can't get the words he wants to say and yesterday had to take 7 away from 93 and just could not do it and he has very good at maths, this worried him. I will be back after the scan to let you all know how it goes.

Many thanks
Penny
 
Hmmmm....well, it could be that the seizures are effecting his memory. That's shy he's having the difficulty with words and math. Or it could be something completely different. Whatever it is, we're here for you and your husband. You're NOT going through this alone....
 
Hi Penney,

Glad your husband is getting checked out. I will say some prayers you get answers and find some help so he can feel better. One tip I find helpful is to write down questions for the Dr. and also have paper/pen to write down things he may say. I tend to forget some things when I go back to recall my appt.or suggestions etc.

Take care and my best to your husband!
Michelle
 
Hi,

Keep wanting to say thank you because I have been left so many nice messages on here and they are all much appreciated. Countdown now to brain scan next thurs but not expecting too much because told over and over on here that normally the scan comes back normal which must make it so much harder for you all to understand why you are having these seizures. I think that would be hard to accept you have them but no reason can be found for them but will cross that hurdle when we come to it. My husband has been doing a lot of reading on the internet and slowly his attitude is changing and accepting the non driving at the moment saying it is for the best which is a major step for him because was so angry and upset beginning of the week.

Once again many thanks for your kind words and update you next week

Love Penny X
 
That's good to hear Penny.

I also was frustrated as to "why" it was happening. But then again, I have suffered from migraines for many years, and to find out that they are in the same family as seizures was an eye opener to me. My migraines are now no longer a problem, since I started taking an ionic magnesium and COQ10. It can be something as simple as an imbalance of a mineral. Problem is, the Drs start giving seizure meds after two seizures, and that throws all the bodily functions out of wack, and you can't do a clean investigation as to the cause.

Get the body healthy is my motto. It is designed to function when given what it needs.
 
Hi There

It certainly sounds as though your hubby has what I have, and I wasn't diagnosed until I was 23, I have Temporal Lobe Epilepsy, I stare, I produce excess saliva sometimes, I have what you called funny feelings inthe stomach, this is known as "Epigastric Rising" and usually precedes epileptic activity, I usually get this just before a Complex Partial Seizure, classic symptoms of these are, staring, fiddling with clothing, muttering, erratic behaviour, I can walk round picking things up, moving things, I can sometimes hear if someone talks to me, but I'm not all there. The taste in the mouth, the strange sensations in the stomach, sometimes a funny smell, sometimes a numbness down one side is called an Aura, and is recognised as an actual seizure, called a Simple Partial Seizure, when the electrical activity spreads to other parts of the brain, this is what is called secondary generalised seizures, I sometimes get a warning or an aura, I sometimes don't, and I don't always have the seizure following the aura, so I am never quite sure what is going to happen when I'm in "wobbly" mode as it has affectionately become known over the years.

The MRI will show up any structural problems, like it showed up my scar tissue on my right temporal lobe caused by being a forceps delivery, a CAT scan will look at slices of the brain, across it, and the EEG will pick up any imbalance in the electrical activity of the brain, I believe there is now an Interventional MRI scan, where the doctors can actually watch the brain working whilst giving the patient tasks, and things to think about and say, clever stuff eh?

As I said earlier, I wasn't diagnosed until I was 23, it came on with the stress from mum and dad's divorce, has your husband had anything stressful happen to him lately? I'm sure the doctors will sort things out for him, if they are as good as they are in the hospital I go to in London, I'm sure you must have similar diagnostic techniques in the States as we do here in the UK?

Let me know how he gets on? I'm off the road too, and I have to walk past my car to get to the bus stop, it must be kind of worse for a man, especially a man that is used to having his independance, we have to wait a year in the UK seizure free, but I know it seems to be different across the States?

Keep in touch, and keep smiling, I'm just waiting to go in for my second lot of brain surgery! Oh lucky me!

Cheers

Elaine x
 
New Development!

Hi everyone,

THanks for all the nice messages left. Just wanted to add that husband's "episodes" changed yesterday instead if the usual vacant appearance his legs and arms were jerking around and even though he was aware it was happening was unable to stop them. Does this mean that his fits are getting worse or is it usual for this to occur? Never happened before.

Many thanks
Penny
 
You should definitely let the neurologist know about any changes in the seizure pattern.

My wife's seizures have changed numerous times over the years - mostly in response to changes in treatment.
 
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