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-   -   My neurologist is the crazy one! (https://www.neurotalk.org/epilepsy/164033-neurologist-crazy.html)

Darlene 01-31-2012 01:36 AM

Hello and Welcome to NeuroTalk!!
 
Hello and welcome, :Wave-Hello: happy to see you have come to be with us, it a great place to be. We caring fellow members here, welcome to a supportive and relaxing place. Our shoulders are here for support in many ways.

Sue has given you some wonderful information on epilepsy. Until I found a very good neuro willing to take the time to listen to my situation and do as he could, including sending me to an Epileptologist. There I was successful in the need in testing and then was returned to the care of my neuro.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Porkette 01-31-2012 06:42 AM

Quote:

Originally Posted by timlaw347 (Post 846673)
You know what...it's when you look outside the square you find places like this that help!

The things that you have mentioned to start looking at suit me down to a T like cutting back on caffeine etc, because some of those things I am already on top of :)

I have one question though; lately I found out that my cholesterol is just below 8, which is not good coming from a Neuro's mouth. So if I was to cut back on caffeine etc, and do what I am already doing to lower my cholesterol, what would happen if I started eating fatty foods at a higher rate? Would that elimate my chances of lowering my cholesterol?

Appreciate any help there, because clearly around a hospital and some Neuro's you don't get the info you need :)


Hi Tim,

My Epi. has limited me to 4 cups of caffeine a day and in regards to cholesterol on the ketogenic diet mine has dropped because instead of using carbs and starch foods for energy you are burning off the fat for energy. If you are interested in this diet you can buy the book titled; "The Epilepsy Diet Treatment" by Dr. John Freeman. I know I was overweight when I went on the diet and within 4 months I lost 75 lbs. it was great losing all that weight and I was able to eat cheesecake, foods with a lot of cheese, butter, heavy creams etc. Here's an ex. of a breakfast:
2 eggs cooked in butter
5 strips of bacon, or 2 slices of ham, or 2 sausage patties
1 cup of coffee or tea
1 cup of juice

Your body is building up ketones which curb your appitite and the keytone reduce/stop the seizures. Here's wishing you well and May God Bless You!

Sue

timlaw347 01-31-2012 05:09 PM

Hi Sue and hi there Darlene,

Thankyou for that info!

Even though I am a tad scared to go on the 'Ketogenic' straight away due to my high cholesterol, I am getting used to this week lowering my cholesterol already so I will continue to look ahead this way, and then if seizures still come along I will hit the diet and give it a shot! What else would I have to lose by not ;)

I have noted down the details of the book title as well, so when my partner and I get a chance to go to a bookstore I will keep an eye out for it :)

Porkette 01-31-2012 07:04 PM

Hi Tim,

You can by the book I mentioned at Barnes and Noble book store if you are interested. Dr. Freeman that wrote the book works at Hopkins University and I wanted to tell you that the diet has been around since 1927.

I have 2 cousins who had tonic clonic (grand mal) sz. and both of them were on the diet and it stopped their seizures. My one cousin was flying airplanes during WWII while on the diet and never had a single seizure until he went off the diet.

The best thing for you to do is to have your Dr. refer you to see a Dietician who can start you on the diet. You will have to fast for 1-2 days and slowly work your way on the diet but take my word my cholestorl level dropped really good while I've been on this diet. The one thing that's important to know is that you can't take the drug Diamox while on this diet.
Here's wishing you well and May God Bless You!

Sue

slacker 02-02-2012 08:19 PM

Hi markrisgold

I would be going to look for a new neurologist. I had a 72 hour EEG done a few years ago and my doctor refused to read it after I demanding 3 times. Walked out of his office. One of the best things I did. I have a excellent neurologist now. I had a stroke when I was 10 months old and my first seizure wasn't till I was about 27 years old. I think my first seizure was a grand mal but not sure. Currently diagnosed with partial focal seizures, and under control with meds.

Darlene 02-04-2012 02:36 AM

Nice to meet you!!
 

slacker,

Hello and welcome, :Wave-Hello: great to have you with us, it a great place to be. As you can see we have a great number and caring fellow members here, welcome to a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Great to hear you are under control.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

slacker 02-06-2012 08:29 PM

Thank you Darlene!!!

starsong 02-13-2012 06:45 AM

Ha! Yeah, that neuro is nuts. My former one decided that even though I had horrible orthostatic hypotension, so bad that even moving an arm would cause me to faint, that my dose of lacosamide should be upped to the max, and then when I had a stroke-like episode, ignored it! This moron then figured that my o2 sat dropped to below 75% on room air was nothing to worry about. I wanted to smack him and so did my husband, now that we knew what he was up to. Same moron who sent me to dr. L, who decided that they were psychosomatic and all bs because she saw how consistent they were. Moron......

markrisgold 02-14-2012 05:04 PM

Update
 

Hello all! So much good info on this Thread...thx to everyone.
I am Cleveland Clinic bound this friday! YEH!!
I had an Epitologist call me directly last week to let me know that he had reviewed all my hospital records from my admission and that based upon it all I needed to be seen asap. Plus he already has me scheduled for the Monitoring Unit in the Epilepsy Center.
He looked at the same test results as my crazy "former" neuro did and never evaled me in person and said I needed to be admitted to the Monitoring Unit asap as well.
So they got me in in record speed from what iam told and I am so thankful

Porkette 02-14-2012 07:25 PM

Hi markrisgold,

I wish you the best of luck at the Cleveland Clinic, you have picked one of the top places to go to they are far ahead of many other Epilepsy Centers. If you have been keeping track of all your seizures make sure you take the calendar with you so they can study it and see if there's a pattern in your seizures. I wish you the best of luck and May God Bless You!

Sue

Keep us posted if you don't mind.


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