Update: My Family

[Rae1889]

Hello all.
I was in bed. I was feeling a little funny. woke up on the floor after work, and can't tell if I had a seizure or not. No owies, save from a bump on the head. I think I may have just fainted again. Either way I laid there with my cell phone calling chad, but getting some lady's voicemail *turned out it was my voice on Chad's message box!*

But anyway, back to what I came on to tell y'all.

So my Mama has her neurologist appointment with my neurologist *Dr. Fast*. We talked about the possible symptoms or seizures she might be having. Everything from her hand going numb for no reason, smelling something burning, feeling the cat purr, deja vu, not being able to speak properly, or jerking while she sleeps. My mum is only 39, so she is still pretty young, and these shouldn't be strokes, although that isnt ruled out. Her CT scan when she was 20 *my age now, and the age when we both decided it was time to get help* was clear, so they said dont worry about it.

Well in the process of talking I mentioned the electric shock thing. the one that seems to start at your tail bone and zoom up your spine. Well this turns out to be something that my sister used to complain of all the time when she was younger, and still does occasionally now *she is 17* she calls it tingle butt. where she gets a little tingle in her tail bone, that forces her butt to clench and then it moves up her spine and she kinda curls into her self for a second *thoughts on this one*

My sister also gets a really bad pain in her back sometimes when she eats. This doesnt happen often, but it once happened so much in a short period of time that My parents took her to the doctor and they couldnt find anything wrong. They did a CT scan, and an xray, and put a camera down her throat. They found nothing. She says it feels like her stomach clenches and her throat tightens for a short moment *like you get a pill stuck in your throat and it hurts* and she feels it in her back for almost a minute. When its done she is in tears. *thoughts on this too?* from reading on this site, maybe abdominal epilepsy? I dont know anything about this, but she does have alot more of the same symptoms I and My mum have.

My mum's brother who lives in Red Deer, Alberta also get deja vu constantly as well as ringing ears.

I am slowly starting to think that this might be a common thing in my family. The other reason I think that this may have been so long before anyone noticed, is because this was normal to my mum and her brother while they were growing up, she figured it was normal for us too. Especially for a while she was seperated from my dad and didnt have a second opinion.

hmmm. Just have a lot of thinking going on right now. Having trouble sleeping and the melatonin isnt helping any tonight.

Well hoping someone is up to shed some more light on this.

P.S. I have my EEG on wednesday. Fingers crossed for some answers.

[KelVarQ]

I'm so sorry to hear all that is going on with you and your family. I can't even imagine how you must be feeling and it's no wonder you can't sleep. I wish I could shed some positive light on it but unfortunately, at least with your mom, it sounds like seizures to me. For you sister and the back problem I'm clueless. However, I have heard that neck problems can cause seizures so I would assume back problems too. Actually, signals go through our bodies (nerves) and maybe there is some shortening going on since she's feeling those tingles. Sounds like a nerve problem which I would imagine can interfere with brain activity? Please take what I'm saying lightly since I really don't know and just thinking out loud.

Again, I can't imagine what you're feeling right now but I do know that you must rest your head and maybe try to sleep. Also, bed rails might be a good idea for you so you don't fall out of bed since you really could hurt yourself and with everything going on in your life I would imagine the stress is surely not helping your seizures.

Please try to rest and think good positive thoughts. Hopefully everything will turn out O.K. and I'll keep you and your family in my thoughts. Kelley

[RobinN]

I am going to suggest this once again.... common food sensitivities, allergies, intolerance, can run in families. The symptoms can possibly cause similar stories to emerge.

Just a thought.

[Rae1889]

Hi robin,
That would make sense for my mum and sister, but I have always eaten differently than them. I hate meat and was vegetarian for a while, and now just eat moderate meat. My sister can devour a rare steak any day. Plus I dont live at home anymore, havent since i was 17, so I have been cooking for my self and chad, and its usually really healthy and more veggies than anything. Although I do eat a TONNE of soy products, so that may have something to do with it

I love soy milk, and tofu *yum* and soy beans and anything soy. It just tastes so good. I heard that soy is high in estrogen, and that is a pro-convulsant. So that might be an issue. I am going to try to cut out for a while after I get used to this med change *this way I can figure out if its the meds helping, or the lack of soy*

Also I dont have any food allergies. Neither does my sister. My mum is only allergic to shrimp, and no other seafood. and even then its only one type on shrimp that swells her tongue.
But we are all sensitive to alot of meds. My sister is allergic to codine, and some sedative they gave her when they removed her tonsils. My mum and I are allergic to morphine and amoxicillin. I am also allergic to acetaminophen, neproxcin, codine and a sedative they gave me for my gall bladder scope thing.

hmmm...

[RobinN]

Yes soy is on the list of possible allergens, and you are right it is very high in Estrogen. Some are considering it as being a possible link to why breast cancer is on the rise.

I am of the understanding that you do not have to have the "typical" allergy symptoms to be sensitive. You might not even have an indication of allergic reaction for quite some time. I have included a great list of symptoms in the link below. It just came across my mailbox today. Great site:

http://www.womentowomen.com/inflamma...ysymptoms.aspx

Do you all in your family tend to eat the same grains? There can be a familial intolerance to these food items. Or another consideration is the amount of antibiotics that were used in the family. We can disturb our gut flora to the point of "leaky gut" and there in lays the introduction to allergy responses. Abundance of white flour products can damage the lining of the GI tract, lack of enzymes can cause food not to be digested properly.

I think there is a connection here that is being looked at from many alternative sources. To have everyone's brain in the family to be wired all the same way, seems a bit unlikely. *(to my way of thinking)

I know the feeling of wanting to wait so you can see exactly where the problem lays. I decided at one point when faced with that same dilemma that I really didn't care what worked, I just wanted something to work. I tweak, and twist , and look back at my notes to see why we had four months free and clear. I do an instant replay and hope to have similar results. Seems like it is a tricky game we play here, or I guess we could look at it as a finely choreographed dance.

[Meetz1064]

can see where the allergies, like Robin, can come in, especially from soy, and from the grain area. Also possibly from the antibiotics.

HOWEVER, I can ALSO see the DISTINCT possibility that you and your family MAY be one of those families that have some form of hereditary E. I know you said you discussed some of this with the doctor at your Mom's appointment. When you go back in with her, AND TO YOUR OWN APPOINTMENT, IT NEEDS TO BE BROUGHT UP AGAIN. I can't stress that enough. What you learn in between can be told to the doc, and, I'm sure, cross-referenced to the 2 charts.

Although the symptoms between you, your mom, sister and uncle may be different, there are enough similarities, that a form of hereditary E needs to be considered.

As for the "tingle butt" sensation. I have no idea......although if it occurred with any regularity, I would say to get her hooked up to an EEG machine to test for it, and see if it IS a seizure.

I wish you luck, my dear.....especially with this, AND your EEG tomorrow. It WILL BE OK.

Take care!

Meetz

[Nakamova]

Looks like your family shares some sort of genetic sensitivity. There can also be an environmental component, like swimming in the same pond growing up, but that probably doesn't apply in your case. And of course allergies as mentioned above. They can definitely start later in life -- my brother didn't develop a gluten allergy until his late 40s. It showed up as a rash that came and went, so it took a while to diagnose. When he was younger he used to suffer from acid reflux, so my guess is that that was either an early warning sign, or a contributing cause. Sometimes we don't put all the pieces together until much later, with hindsight. I hope you and your mother get some answers soon. Good luck with your EEG! I'll keep you in my thoughts tomorrow while I'm cooking (gluten-free) stuffing for my brother...

[Nakamova]

One more thing -- KelVarQ mentioned in a recent post that she just tried using the Delta Sleep System (specialized CDs with music designed to encourage the beneficial Delta brainwaves), and it worked amazingly well for her. Maybe something to try when you get a chance.

[Rae1889]

I will look into that, and get back to you on how my mum's appointment goes. I dont think she will end up on meds right away, but you never know. She has never had a grandmal, unless she had them in her sleep and nobody caught it.

But I'll tell you how my EEG goes too.

[BuckeyeFan]

Don't know much about your Mom's issues, but would strongly suggest a chiropractor be seen for your sister. Research the chiropractor if possible, because there are some that just want to get you into a maintenance schedule to keep you coming back. I know a man in my town whose heart rate would drop as a teenager to the point he almost died a few times. Turned out after all the tests that a chiropractor found a pinched nerve that was causing the problem.

[Chris515]

I'm glad to hear your Mom has her appointment coming up. Hopefully she can get some answers there.

It does sound like a kind of genetic sensitivity in your family. And possible hereditary epilepsy, definitely something to mention to Dr. Fast.

I agree with BuckeyeFan, a chiropractor may be something to consider. It's not for everyone but mine has helped me a lot, and they can help with nerve problems.