Hello, I'm new here

[Denise Cunniff]

Isn't it interesting how things work? In my opinion, these type of forums are proving to be “field case studies” among “patient groups” that will change our entire health care system - over time.

I am new here but started researching epilepsy years ago after my daughter, Christi, was diagnosed. I won't go into all the details of the road she has traveled, along with family, but I will say that her and her husband have always appeared to put 100% of their faith in only what the doctors tell them, and reject just about anything I have to say that might help. After a car wreck in 2009, all hell broke loose and fragmenting of our family intensified. Major depression on her side and my side. More drugs for her. Extreme weight gain. Eventually, I backed off completely as far as her health is concerned.

Then.... five days ago, my dog had a seizure... 6 hrs. later had another. Thank God I was familiar with all of this. It inspired me to get back online and start researching again. Within minutes, I was led to DogtorJ's website.... stayed there for a while... did some more searching and ended up here. I read and read, followed links and researched here and there.... all with the intention of finding as many posts as I could from those of you who have tried "alternative" treatment and management for seizures.

After 100 or so hours of research (and very little sleep... maybe OCD or DIY?), - I feel that I've been "enlightened"!!! And may even have some answers for my daughter. What I thought was going to be research about epilepsy in dogs became a “research paper ” for my daughter’s health and our family’s health. And, after reading what feels like a thousand posts from this forum as well as others, my overall concensus was that DIET and ALLERGENS+TOXINS are at the root of all of our health issues. The interesting part of my conclusion is that the threads that talk about allergens also talk about how for some people, seizures have either been greatly reduced or eliminated by following gluten-free diets (or other allergen free diets) AND have also corrected or reduced other health problems. Serendipity.

One thing’s for sure, there is much more information/case histories out there than there was a year ago. I had some LIGHT BULB MOMENTS during all of this and LOTS of things started to make sense. The big picture --- connecting the dots.

RobinN - thank you. Your posts seem to be so thorough and very easy to understand. You are a true beacon in this community, as well as many others. I am also an artist and have always been one that does not go to the doctor unless I absolutely have no choice (which has only been a handful of times in the past twenty years) nor do I take any type of prescription drugs or over the counter meds/symptom relief stuff. However, I’ve taken vitamins and herbs for over thirty years, but it took many years to understand basics of nutrition and what's good and what's not.

For the first time in my life (I'm 53), I now get the big picture. It all makes sense! My daughter was diagnosed with a gluten allergy when she was a baby, (the doctors said she would grow out of it) and I certainly never made the connection to her "epilepsy" - which may not be epilepsy at all!!!! She was more or less diagnosed approx. 13 years ago and is now 37.

Everyone in my family has some kind of health issue and I now see some common links. And common symptoms. And common eating habits. Possibly a common allergen. As time goes by, more symptoms appear, they go to the doctor for the “symptom” and they get introduced to more and more drugs. The cycle continues.

I finished this phase of my research this morning - then got back on line and saw this post. I LOVE SYNCHRONICITY! I have always felt there were “alternative” solutions to this syndrome of epilepsy. It effects every aspect of one’s life as well as every family member. Conclusions from research:

Top 10 non/drug alternatives to improve threshold levels (other than reducing stress):
#1 - IDENTIFY AND ELIMINATE THE ALLERGENS + toxins from your diet & environment. Research the effects of MSG/gluten.
#2 - NUTRITION IS KEY - understand your vitamin & mineral deficiences - B vitamins and magnesium deficiencies are common in many seizure patients. Taurine is also mentioned often. Read all labels. Eat locally grown organic.
#3 - LEARN HOW INFLAMMATION IN THE BODY & BRAIN IS EFFECTING YOU + brain-gut connection. Consider researching Celiac disease if your diagnosis is not a sure thing.
#4 - LEARN HOW BREATHING TECHNIQUES CAN HELP improve your threshold. Individuals are finding that a seizure can even be aborted in some cases.
#5 - LEARN ABOUT THE AMAZING THEREAUPTIC EFFECTS OF MUSIC, help nerves calm down and neurotransmittors to balance.
#6 - DO THE RESEARCH.
#7 - REGULAR MASSAGES with the proper essential oils - followed by an epson salt bath - will help relieve sore muscles, calm emotions, and help keep the body balanced.
#8 - AROMATHERAPY can help decrease the nervous tension, fog, and depression.
#9- NEUROFEEDBACK
#10 - CONTINUE TO COMMUNICATE YOUR DISCOVERIES

Remember, reducing stress is a widely accepted “alternative treatment” but it took doctors many years to accept it. Some of you might want to consider the following when it comes to going wickity wackity:
"honey given orally can bring some people out of a diabetic, hypoglycemic, or epileptic seizure immediately.” Keep packets of honey in every room of your home, in your car, and in your purse (if you carry one). You, or others that recognize the onset of a seizure can quickly grab it, open it and administer it orally. Control your breathing. Breathe deeply, in through your nose and out through your mouth.

Family members: Turn the t.v. off and as many lights as possible. Calm yourself down. NEVER yell at anyone! Breathe deeply, in through your nose and out through your mouth. If you've done the research on music therapy and found a CD that "resonates" withe the seizure patient, now would be a good time to put it in the CD player.

I have documented my recent study and will present it to my daughter next week. Wish her well! If anyone wants to see it, I would be glad to share. I haven't tried the gluten-free diet yet, but I know that it is an issue. In the past few days I have been "listening" to my body when I eat something with gluten in it, and I can definitely say that it affects me in an adverse way. That stuff is in just about everything! One last note - research the benefits of honey. It has amazing antibiotic and healing properties! It’s the only food on our planet that doesn’t rot. Love the bees.

“As many many people have testified: “My friends and relatives still probably think I'm nuts, but they are the ones still running to the doctor and hospital.” Or reaching for another bottle of pills."

THANK YOU ALL!!!!!!!!!!!!!!!!!

 

[sue fredericks]

Hi, Denise, I just joined today. I'm so sorry about your daughter as well as your dog.
As I was reading, I started to wonder if she might have a gluten sensitivity-and my heavens! You brought it up yourself. I was diagnosed with gluten sensitivity about 2 years ago, but my seizures have no connection to it. It's not celiac just a type of allergy to it. I got a book from Barnes and Noble on problems with gluten, and saw all sorts of things that can actually be problems with gluten, but are misdiagnosed as other things. Seizures were one of the reactions, so were some forms of autism, fybromyalgia, thyroid, chrones (??) etc., etc. That's not to say that those conditions don't legitimately exist, just that sometimes reactions to gluten can resemble other things. A friend in my book club has a son with autism, and I contacted her and told her what I'd read.Her son's pediatrician had already suggested he take an enzyme-DPP4 , to help with gluten problems. She got the pills on-line-I found "Gluten Digest" at a local health food store. there are several other names for the enzyme, too-gluten ease is one that comes to mind. I can now eat bread and pasta as long as I take the pills first. I do have problems if I overdo it-can't have two slices of Italian bread as well as a generous serving of pasta-, but a regular serving is ok. My friend said her son has a gluten free breakfast at home, and gets his pills from his school nurse so he can eat a "regular" sandwich with his classmates. She said his autism improves when he takes the pills-it's not perfect, but much better.
The book also said that cats and dogs with seizures could actually be reacting to gluten filler in their food! And...those of us in middle age have learned the hard way that foods you had no problem with before can suddenly cause allergies.
I met a woman several years who told me that she had been in a horrible car accident about 10 years ago, and now had severe allergies to many things that never bothered her before. She couldn't even enter a nursery to purchase petunias because there would be tomato plants in the nursey, too. She had horrible reactions to tomatoes. She's from the midwest,a nd started to see an allergist at the Mayo Clinic-he told her that extreme trauma to the head can cause all sorts of reactions to things. You mentioned a car accident...Just something you might want to consider.
I do acupuncture to help with arthritis and stress. (I teach middle school Spanish-need I say more?) some acupuncturists sepcialize in allergies, including gluten.
Good luck!

 

[Nakamova]

Hi Denise, welcome!

You're right -- there is much in our daily environments than can directly or indirectly affect health. Everything from additives in our foods, to BPA in our plastics, to pollutants in the air. And gluten seems to play a role for many with epilepsy. I hope your daughter is able to take advantage of all your research and able to improve her health.

Best,
Nakamova

 

[RobinN]

Welcome Denise.
Thank you for your kind mention in your post.
I am touched by your story, and that is why I continue to encourage people to consider the possibilities. Many are very afraid of the changes that are necessary, but when quality of life improves it is certainly worth the effort.

I hope that your daughter is open to your new information. Perhaps if she learns how your dog is responding she might be more willing. I saw in my own family that I could connect the dots to many symptoms, and it began to make sense.

Welcome to CWE - and I want you to know that your mention was very touching.

 

[Chel]

Sleep is also a very important factor in avoiding seizures. Not only is sleep deprivation a seizure trigger, I've recently found I can re-set my pre-ictal symptoms by taking a four-hour afternoon nap.

Good luck with your daughter, Denise.

Chel

 

[Denise Cunniff]

Wrong diagnosis?

Thanks everyone! Until yesterday, Christi had more or less given up on the doctors ever helping her, and had even stopped taking her vitamins, but today is a new day. This has all been such a blessing and the research has made a dramatic difference in her perspective! She’s very open to learning more about the findings and alternative treatment options.

She’s dealt with the seizures for so long that she is very aware of her need for “plenty of sleep, eating regular meals, and reducing stress” which she has done a fairly good job managing, but when it comes to eating right and taking vitamins, etc., that’s where she has been slacking for two years. Maybe because she has three children ages 6-14 and a husband that travels often for his job, and she is also going to college and was trying to work part time until a few weeks ago. Even without the proper nutrition, and the busy lifestyle, she went for a year without a seizure until January, then had two on one day and another seizure one month later.

Needless to say, she needed the confirmation of how important the health/nutrition aspect of all of this is. Now, she also has a basic understanding of how the allergens/sensitivities/toxins affect her immune system and how the resulting inflammation eventually spreads to her brain and leads to seizures. In my opinion. Personally, I have never believed her diagnosis was correct and now that I’ve dug into all of this, I’m even more convinced. I came across wrongdiagnosis.com today and started to look for more answers. Did you guys know there are this many causes of seizures??????:

“This section discusses 2418 medical conditions causing Seizures.... There are likely to be other possible causes....”

It’s a great site! I'm summarizing symptoms and connecting dots and figuring out possible causes for everything from hair loss to migraines to whatever for everyone in our family. The first priority is Christi though. After she shared more about every kind of symptom she has, we think she may be Hypoglycemic. Also, we both had hepatitis years ago which concerns me when it comes to her medications and the liver toxicity.

“The liver is a vital organ, and normal functioning of the liver is crucial to health and life.
...Hepatitis can reduce the liver's ability to do its vital job in helping the body to fight infection, stop bleeding, clear the blood of toxins, store energy, produce healthy blood, digest food and remove waste.”

Not counting all the dosage changes over the years, she thinks she’s on her tenth round of different meds - has been on Depakate & Vimpat for the past fourteen months and also takes over the counter sleep meds. Our hope is that she can eventually get off of these, but not until her overall system is much healthier.

Now we just need to figure out exactly what ALL the tests need to be for hypoglycemia, liver function, bone loss, excess weight gain, vitamin/mineral definciencies, gluten allergy, and possibly some other things, etc. Then we will develop a nutritional, gluten-free, vitamin & mineral regimen.

I also stated some things wrong in my post and Christi let me know - Her first seizure was 8 yrs. ago when she was working at a daycare center, 8 weeks after delivery of her second child - and she will be 36 next week. (I’ve had a whole lot of brain fog lately!!!! too much computer time not enough rest, and too much information to absorb!!!) Sue: thanks for the suggestion about enzyme-DPP4 - I'll certainly check that out.


Any suggestions would be greatly appreciated. In the meantime, we are going for a massage!!! Christi says “Hi!”

 

[sue fredericks]

You have got to be kidding! Over 2,000 causes of seizures! Mine were due to puberty, and an increase in estrogen. I found the The Pill helped me control seizures (it can help some women, not help others). I also learned the hard way that birth control pills aren't as effective with anticonvulsants. Yes, 2 different times!! Unfortunately, both times were miscarriages, but that's another story.
Now that I'm in my 50's, at "the other end of puberty" I joke and tell friends that I may have lost my waistline, but I also lost my seizures! ; )
Life is not boring, is it?
I really appreciate the research you've done. I find this stuff fascinating!
Sue

 

[Denise Cunniff]

Light bulb moments

I also find this fascinating. If you haven't checked out that website wrongdiagnosis.com you might want to. For any symptom, you can pretty much determine what it might mean, treatment, etc.
Take care!