Hi from the West Coast...

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KarmasCreation

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Hello Everyone...

Ive come here hoping for some answers and support as we are in the diagnosis phase right now with my fiance. We dont have confirmation that he has epilepsy but someone was talking to me about Temporal Lobe Siezures the other day and when I look up symptoms etc of it online it really fit the bill.
We went to our family dr. yesterday and he is sending us to a neurologist and for EEG test and some others I believe.
Until we get some answers and/or an okay for the specialist our dr has told us that my fiance cannot return to work (as his work requires him to be up on 30 foot lifts and such)
We are due to be married in less then a month (Oct 9th) and have 3 little boys together
J
 
Hi J -
I am also on the West Coast (that is assuming that you mean CA).

It took me a while to learn this, but it was very important in helping my daughter toward health. The term Epilepsy only means your fiance has had two or more unprovoked seizures. It is just a label. It is not a disease or an illness. Seizures are the symptom of some cause. An imbalance, an overload of ?, or a body that is stressed by many reasons.

Best idea is to begin keeping a journal. This will show the two of you what seems to trigger his seizures. My daughter is med free at this time, and has improved dramatically by making nutritional changes. Conventional doctors don't consider how nutrition, and the health of the intestinal tract can play a role in seizures, but it is well documented. '

Most likely your fiance will be taken for many different types of tests. They may show you something and they may not. Don't get over excited about seeing a test result come back negative. Actually that might be a good thing, and mean that there is a clue to his path back toward health.

Hang in there. I hope the stress of the wedding can be reduced for him, because stress does tend to lower the seizure threshold. BTW - we all have a seizure threshold. His is just lower for some reason. We all need to find ways to raise it and remain seizure free.

Loads of support here. Stick around.
 
Hi J, and welcome!

This is a great place for info and support -- especially when the diagnosis is new and hard to get a handle on. I recommend that you write down questions to ask your doctors, and also take detailed notes of what they say. It can be confusing, and the treatment choices aren't always clear. While medication is usually the first-line treatment , it comes with side effects that can take a toll and affect quality of life. You may want to consider alternative and complementary treatments at some point, and this site is a good place to find out about those too.

Best of luck to you and your fiance!
Nakamova
 
We actually have been seeking treatment using anti depression meds because we have been thinking he has depression/anxiety disorders... however when someone mentioned Temp. Lobe Seizures and i looked into them they started making a lot of sense regarding his behavior and mood patterns.
We never considered anything neurological before as he doesnt have a most people would see as a seizure. He remains what appears to be conscious and lucid but I can see by his eyes hes not really all here. He can go from really sad and then angry or happy in the blink of an eye then he becomes more unresponsive then will just pass out or what seems like he just goes to sleep... after awhile he wakes up and doesnt remember anything.
hes been like this since ive been with him 5 yrs now... but in the past few months its become much more frequent and intense and twice now has been soooo bad... that the other night i had to call 911

i read in another post that neurotoxins like caffeine and beer are bad....
my fiance drinks loads of coffee and indulges in a few beer most every night.
we have agreed before i even read that.. that these may be triggers and he needs to cut back or cut it out all together.
 
Welcome...this is THE place to come for information, support, etc. I got diagnosed about a year and half ago and don't know I would be coping so well if it were not for this wonderful group of people!
I have both simple and complex partials. When I have a complex partials, I can only describe it as the porch lights are on but no one is home! I walk, talk, ect...but I have no memory. It is not uncommon to fall asleep after a seizure either.
One thing to keep in mind, seizures, their treatment and reactions to med/treatment can vary greatly from person to person
Jenn
 
Hi Karma!

What you and your fiance are going through sound similar to what my partner and I are going through right now too.

We're also in the phase of waiting for an EEG and to see the Neuro, but my partner has many of the same symptoms you've described your fiance having. Over the years he's seen many psychs, who suggested E, but never followed up because my b/f didn't recognize his symptoms as being possible seizures. He was diagnosed first with depression and anxiety, then with bipolar II and agoraphobia. It wasn't until I caught him in an obvious absence-type seizure that we started exploring this route.

This is the place for information and support, and everybody is very welcoming. You'll be able to find guidance, figure out what actions to take, and maybe even get a few definite answers.

It's nice to have you here, welcome!
 
occb - thank you!
its nice to know we may be on the right path then.... we were beginning the route of hte psychs etc but i feard it was something else and when someone metioned these temp. lobe siezures a light went off... i had Fiance read all about it and he agreed it sounded just like what he experiences.
part of me doesnt want them to find anything but a bigger part of me would be happy to have some answer and hopefully get on a path to a healthier state!
 
No problem! I know what a relief it is to find out you're not alone.

Keep in mind that it's fairly common to have psychological issues along with E, and, also, these episodes could have a psych origin, rather than the other way around, but I suspect a Neuro may be able to distinguish it better than a psych can (judging by my partner's past experience with Psychiatrists).

The best suggestion I've gotten so far is to keep a record of the episodes (time of day, what happened before, during, and after), along with what he's eaten, how much he's slept. It could help you discover what his triggers are and will give you a complete record to give to the doctor. I know there were other things Meetz suggested, but I can't recall them right now.
 
It can helpful (although not easy!) to record everything -- anything that might be a stress on the system, ranging from diet to overall health, from exercise to sleep to allergies. Everyone has different triggers, but if there's a chance to isolate and potentially eliminate your fiance's that's a great step in the right direction.

One of the little known facts about epilepsy is that it doesn't always take the form of convulsions. There are kinds that don't involve loss of consciousness, and/or that seem to overlap with certain migraine symptoms. If more people knew this, then epilepsy could be diagnosed and treated sooner.
 
Fiance has LOTS and LOTS of allergies.... the other night when he was more then likely suffering a seizure I didnt know what was happening I shot him with his epi pen before calling 911
 
(((Karma)))

You've certainly come to right place. Lot's of amazing people around here to help you out and give you a bit of their own experiences.

My wife has E and I come here on her behalf. She has had 3 tonic-clonic seizures and one partial seizure. She's now on medication and it's been almost 6 months since her last seizure. Things do get better and you'll both make it through this together. Just remember that as others have said, it's a label not a definition of the person. Your fiance will still be the person you know and love. Once you figure out the triggers and get the seizures under control, things will get much easier. It takes some time though so expect a bit of a tough road.

Also I will say make sure you take care of yourself as well. I've gone through quite a bit of mental health issues myself as a result of not understanding E and doing the classic freak out about it. Get educated and learn as much as you can. The more you know, the more you realize that it's not the end of the world as you both know it.
 
I too am new. Just diagnosed but CT showed no damage and EEG showed nothing. So still working through it. And finding my way here has helped alot. Welcome to the forum.
 
KarmasCreation said:
Fiance has LOTS and LOTS of allergies.... the other night when he was more then likely suffering a seizure I didnt know what was happening I shot him with his epi pen before calling 911
Click to expand...

What sorts of things is he allergic to? Are they food-related or are they to other things?
 
the main ones i know of are food - nuts, prawns, ham, the list is long
im sure he has environmental ones too... i have urged him to get retested so we know but he hasnt as of yet.

we just had our 2.5 yr old tested as he suffers extreme eczema and he came back positive for peanuts, shell fish, dust mites
 
Hmm, smoked meats such as ham as a definite trigger for my migraines which seem to be related to my seizures. I think that nuts and prawns are for some others too. So you may already have a clue as to how to get control of them if they do turn out to be seizures.
 
KarmasCreation said:
the main ones i know of are food - nuts, prawns, ham, the list is long
im sure he has environmental ones too... i have urged him to get retested so we know but he hasnt as of yet.

we just had our 2.5 yr old tested as he suffers extreme eczema and he came back positive for peanuts, shell fish, dust mites
Click to expand...
Yikes, it must be difficult to have a little one with allergies. Poor little guy :(

For the ones listed for you fiance -- does he react generally to processed foods? I was just thinking, depending on the ham you buy, it might contain sulfites which are high on the allergen list. Maybe that's a common factor for some of the items your fiance reacts to?
 
Hi, hello

and how do you do, KarmasCreation? I like that screen name, btw. :) Welcome to CWE.

Feel free to check out all of the nooks and crannies here. Mr B has built us an AWESOME home here, and the Library and Kitchen are full of all sorts of information. The Padded Room is great for venting when you need to--trust me, we've all been there at least a time or two. :)

I'm Meetz. Occb mentioned that I'd recommended things to keep track of to help find out what triggers for seizures might be, and from the sounds of it, I think you might benefit from the list. So, I'm going to go ahead and post it for you. I'll warn you now, it is a bit long and detailed, but it WILL help you and the doctors.

************************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses To The Above List :)


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.


****NOTE**** Some people have noted tat their seizures are tied to the movement of their bowels, also, so if you need to track that also, please do so.


OK, so I warned you that was a lot. Hopefully that helps you a bit.

Take care,

Meetz
:rock:
 
Want Answers?

Welcome Karma

Your Fiance sounds like my twin, but he's in male form, I Had TLE my entire life was raised on major toxic meds for the first 27yrs of my life to then have a very damaging lebectomy, to then go against all traditional treatments, and searched for the cause(s) to it all, and found it by getting tested for allergies and had them beyond belief and even regular treatment and because your fiance already knows this, do you want the proof that allrgies can cause szs? Go to your library and get the book "Brain Allergies" by dr. William Philpott.
I also have many other websites about daily envirnmental toxins ppl take for granted and not having a clue how sick they're making themselves

Sincerely
Kathy
 
Last edited by a moderator:
Welcome!

Karma,
This is a great site for support and for some information. This is not 'the' site for all information but it can really help. From my experience this will be a journey that will take time. If you can survive having 3 kids then you understand patience. I would encourage you to use all the support that is here as much as you can. Sometimes this gives me more support in knowing I am not alone. I rarely comment but I am an avid reader on this site. How ever you need the support it is here so welcome and I am sorry for what you are going through.
 
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