New to forum & seizures

[Bobbi]

Hi everyone.
New to this forum. I am a 57 year old woman, I have HBP, allergies, hypoglycemia and asthma. I use to exercise a lot - now I only do a little yoga.
I had a series of seizures on 12/13/2012 first one ever! Had no warning signs but I was found on the floor of my office, came to , don't remember a thing. Taken to the ER, then ICU for 3 days, home in 3.5 days. Again I only remember after awaking 3 days into it. They had a breathing tube down my throat and drugged me. Must have been nice for my family to see me like that. I had blood tests, EEG, cat-scan, MRI and they say there's no reason that they could find. The doctor told my husband stress wouldn't cause it. I had taken a final the day before (pre-calculus) and was glad it was over. Before this I would have red wine every night. At least 3 glasses. Before thanksgiving I was on an almost vegan diet and then went off. I will return to a neurologist next month. I am on medication (levetiracetam) 1000-2x day, and I can't drive - or so that's what they told me. I was thinking of getting a pet-scan and doing a sleep study. A few days before this happened I awoke with blood in my mouth. I didn't think anything of it since I grind my teeth - just thought it was part of my TMJ. Could have been a seizure while I slept. I was suppose to meet my daughter for dinner that night for her 21st birthday celebration (boy did I mess that one up). I will be reading through the forum to see what others have been through. I think my husband is tired of me talking about it and driving me to work. I will be applying for local transportation for handicap people but that takes a few weeks to get approved.
Sorry if I rambled but I am at work now so I gotta go but I will check in later.

 

[jyearta]

Hi Bobbi,

This forum is great.

I'm 60, have had seizures all my life, was diag. when I was 18.

We all react to the diff. meds. diff. so if one doesn't seem to work, ask to try another. it has always taken 2 to keep my seizures under control..for the most part.

My experience has been that anti- seizures meds. deplete vitamins.

I keep a dairy, listing seizures date, how,long they lasted, any triggers.

Lack of sleep, fatigue, infection, some foods, there are many more triggers

 

[Bobbi]

thanks jyearta. I haven't had any seizures before or since - so either the meds are working or it was a one time thing. The meds do make me sleepy and I feel I am foggy at times. So are you saying I should take extra vitamins? I am reading Dr. Furhmans books on nutrition (nothing related to seizures) but I am considering going back on a vegan diet. I guess I should keep a diary (diet, symptoms, emotions) but who has time to do all that and still live a full life?

 

[jyearta]

I hope your seizure is a one time thing for you.

I have been on meds. for 42 years, in 2011 I have the energy to get out of bed. When I told my Neru. of this, she checked my B-12, it was so low.

You will find post on this forum about the gut and seizures interact. This is true for me.

Hormones are another trigger I wanted to tell you to watch.

 

[Bobbi]

thanks I will do that. Do docs know this and check or do I have to be more aggressive?

 

[jyearta]

thanks . Do docs know this and check or do I have to be more aggressive?

I am still trying to figure Drs. out. I have had THEM not mention a word on so many issues. That is what lead me to this forum. I needed help and was not getting it from my Dr.

I have learned so much on this forum.

 

[CQ:)]

Hi Bobbi,
Welcome to CWE, the members on here are great & as we are all in the same situation (either have epilepsy or are a loved one of someone with epilepsy) we all understand. As jyearta mentioned you will find some really good information which should help you.

The doctor told my husband stress wouldn't cause it. I had taken a final the day before (pre-calculus) and was glad it was over.

There are many different triggers to seizures but stress can be one trigger which it seems a lot of people with epilepsy have.
I usually have more seizures when I am stressed or over tired.

I had blood tests, EEG, cat-scan, MRI and they say there's no reason that they could find.

Sometimes we will never know why we had a seizure. There are other members on here who had their 1st seizures when they were older. For me I had my 1st seizure when I was 9 months & took tonic clonic seizures until I was 3 then I had no more seizures until I was 24. My MRIs showed scarring on my left temporal lobe which the neurologists/epitiologists believe may have been from the TC seizures I had as a a baby but no one is sure why I went 21 years seizure free.

As jyearta also mentioned keeping a diary is a great idea as it is a really good way to keep track of seizures & if anything is different. I keep a seizure diary which I usually note any seizures I had, any information I knew about the seizure or if I noticed anything different in the way I felt. When I am due to see the neurologist I print out a copy of the seizure diary with any new information on seizures I had taken & hand it to the neuro at my appt so he can read it while I am in with him.

Good luck with your next neurologists appt & hope that the seizure you recently had was a one of.

 

[Nakamova]

Hi Bobbi, just wanted to add my welcome to the others. I know it can be especially tough when the seizure onset is recent. It's a lot to get used to, and it can take while to get a sense of what's going on and how to adapt to it. CWE is a great place to get tips and support, so Ihope you feel free to explore the forums and ask questions.

Regarding triggers: All sorts of things can trigger seizures -- including stress. Physical, physiological, environmental, and emotional stressors all can play a role, individually and in combination or cumulatively. You mentioned that you have hypoglycemia -- any chance your blood sugar was low when you had your seizures? Low blood sugar is a trigger for many, including me. Food allergies/sensitivities and nutritional imbalances can also be triggers. While you were on the vegan diet were you taking supplemental b12? It's rare, but a b12 deficiency can sometimes cause seizures.

Best,
Nakamova

 

[Bobbi]

Thanks for the welcome! As for my hypoglycemia I don't know what my blood sugar was when I was in the hospital. I was trying to get copies of all of my hospital records and I filled out the form and I got a response back saying that in order to for me to get my copies it would be over $300. To my doctor it was free. So I haven't gotten any copies of any tests or anything yet from the hospital. After I got out of the hospital I did visit my doctor and get a five hour glucose test but my doctor said that it wasn't that severe that it would cause a seizure. My question about that is the test was done two weeks after the fact. So in his opinion this didn't cause it. My thoughts are that could've been a combination of the stress and the Hypoglycemia. As for the B12 while I was on the vegan diet I was taking B12 at the time. Plus I wasn't 100% vegan I was still eating some fish. I still feel that I'm not 100% myself yet since this happened in December. I'm hoping it's the medication and not me. I have an appointment for neurologist in February but I'm also looking at another doctor and maybe I'll see him for another opinion.
Thanks again for all the advice and I will read through the forum when I have more time.

 

[arnie]

Hi Bobbi, and welcome. I noticed you said you have asthma as well. My wife (she is 54) had bad asthma most of her life. Needed inhalers (often 2 or 3 different ones, occasional steroids, breathing treatments, allergy meds, a few hospitalizations, etc.) A few years ago someone suggested she cut out all white stuff from her diet. (When you think about it, most of the white stuff we eat has been refined and manipulated so is not something that is usually found in nature anyway.) Refined flour, white sugar, white rice, dairy products, white potatoes, etc. After about a month of that her asthma decreased a lot, and then pretty much went away. She has been pretty much completely free of her severe, lifelong asthma since then. She runs, coaches soccer, works out, rides a bicycle, works in the garden, plays with the grandkids. Pretty much no limitations, allergies or respiratory issues at all. You might want to give that a try as well. It's easy to do. Onward!

 

[Bobbi]

thanks arnie- my husband has celiac as do my grown daughters, however we are about 75% gluten free. My dairy allergy prob doesn't help either - I am on the road to being "white free" but its not as easy as you prob know. Onward!

 

[BrandiBrat]

Hi Bobbi, welcome!! I had to giggle when you mentioned that your bubby is getting tired of hearing you talk about it. I'm at that stage too. I had my first seizures in November due to a head injury and my seizures are out of control. I ramble on to any of my friends and family who will sit still long enough to listen to me haha. It's what we do to process through it and right now I feel as though I'm made of glass so they just need to deal with it.

I hope that you continue to be managed by your medications and it's nice to meet ya!

 

[Bobbi]

hello BrandiBrat
He has his moments but I do understand. He drives me to work now also which is a burden. 22 miles 1 way 4x a day. I may have a carpool buddy in the morning starting next week. Sorry about your head injury - at least you know why you are having them. I'm so in the dark but I am also trying to remember any past episodes which may have been mild seizures and I didn't know it.
Nice meeting you also and everyone else here so far!

 

[Bobbi]

Hello again - 15 months after my major event I am still in the dark but there can be a little light at the end of the tunnel...I am still on generic keppra (3,000 mg / day) and I have also changed my diet drastically. I do not have any grains, dairy, no spices except ginger, sugar (except some very dark chocolate), I can have bison, eggs, cruciferous vegetables, leafy greens, lemon, banana and strawberries, some seeds and pecans ...all preferred organic. My treat is organic sulfite free red wine and dark chocolate. I do take a lot of vitamins including fish oil, coconut oil, D, A and magnesium (to name a few). My dream state is returning. My ears ring though (seems constant) and is the most annoying. I am allergic to my daughters pug but he didn't live with us when I had my seizure. I don't drive and do miss it a little but I am not rushing to take more meds just to drive. I visit an orthomolecular doctor in New England and I will be switching neurologists again in May 2014. This will be my 4th one. I am not deficient in keppra so I am sticking to my diet and hopefully the new neurologist in May could shed new light on my condition....we shall see.

 

[Belinda5000]

Hello Bobbi,
I was diagnosed when I was 2 years old and I'm 52 yrs old.
I'm refractory and anything can bring on a sz for me.

I have some triggers flashing lights,stress,sometimes crowds.sleep deprivation.If I miss 2 or more doses of meds..

My husband also also has epilepsy but has been controlled since his surgery in 1972.
I wasn't so lucky.

 

[DHMary]

Hello Bobbi; my wife55 used to have asthma. Still allergic nuts peanuts and eggs. Her sugar does drop fast 168 to60's in 30 minutes. Some docs say quick drop is the issue what you drop to. We are exploring ketogenic diet. On vimpat and zonigran. 1 to 8 seizures per month





Sent from my iPhone using Tapatalk

 

[Bobbi]

Hello Belinda 5000 and DHMary
I guess I have it pretty easy compared to you folks! I have only had 2 episodes in the past 1.5 years....that I can tell. But my first was status so what a way to get introduced to this horrible disease. Actually I don't refer to it as a disease anymore but think of it as a symptom of something else. I have been obsessed with reading about health! Recently reading and listening to podcast more about functional medicine. My diet is very strict and I have a doctor who tests me every few months. The supplements are also advised by him including allergy drops that he designed. I have changed neurologists and have added LAMOTRIGINE ER (generic for Lamictal XR) building up to 100mg and reduced my Keppra to 1000 mg 2x/day. I think I have more energy (mental) but now since I changed a bit, I'm not sure if its the meds or the diet. I have been on the diet now for 6+ months. I would say that my diet is close to a ketogenic diet. My ketones have increased in my urine test in March when I went to the ER. Most of the studies are for children but why wouldn't it work for us? I've lost weight too which I never could before even when I went to the gym 4x a week. Not a bad side effect and it has leveled out. My asthma is somewhat under control but I have to find a medication I can use for it. I only use Maxair with isn't for daily use. The recent prescription I was given for asthma contained milk protein which I am allergic to so I rejected it. You have to check ALL he ingredients in our foods and drugs! Amazing! The new meds I am taking does have lactose in it (I don't seem to have an issue with) and so far I am ok with it but in September I go back to my nutritional Doctor and see what he says. In addition to my diet I use 1T coconut oil 2x daily usually in warm water or tea. Suppose to help with brain health. I use Swanson's organic extra virgin - get it online. Its also good for other things. I use as make up remover. I always forget to check my sugar as I am hypoglycemic and I have read that many with epilepsy also have hypoglycemia. Odd.
I hope you find what works for you as we search for better health all around.
Bobbi

 

[DHMary]

I think not all lactose is from milk. Ck it out


Sent from my iPhone using Tapatalk

 

[Bobbi]

I couldn't find any info on any form of lactose except from dairy including mothers milk. If you have info please send it to me.

http://en.wikipedia.org/wiki/Lactose

 

[Ruth]

Bobbi, you said that you drink wine. Any alcoholic drink can bring on seizures. I have had status in the past. I had to stop drinking all together.

Ask your doctor for Ativan, that is what they give in emerginces. It works. When you feel a seizure coming on, take it.

I am on Keppra, as well. Did your neurologist tell you that you need to take Vitamin B Complex, one pill a day? My neuro did. Keppra depletes Vitamin B.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.