I want to thank you all many times over for all your help. It means so much to know that other people "know" what I am going through, instead of doubting me. My husband and son try so hard to let me know that they understand and I know that they do, but all the "professionals" telling me that it is all "in my head" (which no doubt it is, neurologically speaking) really frustrates me at times

I am on a cancellation list at the Duke Epilepsy Clinic, so I hope I can get in sooner than May 1. But I also want to be with my dad while he is going through his surgeries in the next few weeks. He lives in WV and I in NC. So my husband and I will go stay up there. But it will kind of be refreshing in a way. A getaway, sort of.

Thanks again for all your helpful suggestions and support

M

Hi Hurtsobad,
Here are a couple of website that may be of help to you for info.

www.epilepsy.com
http://www.neuropat.dote.hu/neurology.htm
When you come to the main page click on epilepsy or you can do a search. Here's wishing you well and May God Bless You!

Sue

Hi and welcome aboard! I've had both migraines and seizures (now primarily migraines thanks to surgery, and those are limited due to medication and therapy). My migraines were due to the seizures and hormones (PCOS) and I'm not sure if you've thouught about this or not, but if you have GM seizures or even CP's are you clenching your jaw? I had terrible migraines due in part to a dislocated jaw caused by a gm seizure. It took therapy and a funky mouth guard that I wore for months at night and one during the day to correct my jaw and bite but it worked. I still take Topamax every day to prevent migraines (and seizures), but let me tell you that mouth guard therapy was amazing. I could barely open my mouth and now I have almost full range of motion again. It's worth checking into.

I noticed you also mentioned congenital spondylolisthesis- I have that too, but it shouldn't be causing your migraines. Uncomfortable, yes, I have found pilates mat work to be the best therapy for me. Have you found any particular therapy that works best for you?

I hope you find answers to your questions soon. This site is a wonderful source of comfort. Again welcome. ((((hugs))))

The best suggestion I can give you while you wait is to keep a very detailed journal. Even when it's hard to write or color (I'll show the coloring part in a minute), it's going to be extremely beneficial for you and your epileptologist. Trust me, I've done a body chart coloring that looked like a two year old did it since it was during one of my 'shocking' episodes. I re-did it the next day for clarity, but kept both copies.

(Copied from my old post)

Tips For People With Epilepsy & Seizure Disorders

• Keep a Journal
• Print out blank anatomy charts (several copies) and buy a nice set of highlighters/Markers
• Write down each color for each sensation. Example: Red:Sharp Pain - Orange:Tingling - Yellow:Numbness - etc..
• Keep several folders. One for yourself, one for your Neurologist/Epileptologist, one for any ER doctors you may have to visit, etc.
• Make SURE you have a MedAlert Bracelet/Necklace or an Emergency Card!
• Update your Journal daily, at the end of each week - in a new notebook, recap each new concern you may have. This will assist you in communicating with your doctor(s)

What is the purpose of this?

Your journal will be in the format of a seizure log. You can create your own, I have made my own and would be willing to share if you'd like to use the format. Otherwise, you can find many online.

My format has blank spots for the following things:

• Date: (This is to list the date of the seizure, aura, or any strange/new sensations)
• Time (This is to write down the time of my seizure, aura, or any strange/new sensations)
• Duration (This is to mark how long the episode(s) listed above may have lasted)
• Symptoms (This is to explain in detail about the symptoms)
• Activities During Episode (This is to list what I was doing at the time or prior to the episode)

What in the world are the anatomy charts and markers for?

Sometimes, as with many people who have Neurological complications - our short term (and sometimes long term) memory isn't a great friend of ours. We may forget important details our doctors need to know. Keeping these charts and 'coloring' the affected areas will allow them to see -visually- what exact areas you were attacked in. Having a journal log attached with this will give them the best idea possible, allowing them to properly diagnose you (if that applies).

As shown in the examples below (You can save these images via -> Right click, save as) - You can have one with a date, or if you'd like to explain via color - just color in each box and add whatever sensation to it's matching color (You should use the blank one, and a similar format but using your own sensations).

[In the image below, you'd color in grey boxes]

[In the image below, this is an example of what a finished chart would look like]



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Get some paper clips, so that way if you have to use your body charts, you can attach them to the journal you have. I keep copies of my journal - one for my neurologist, one for myself.

I also keep copies of all tests I have had done, and make more copies for each new doctor I see. This saves time and money on medical record requests.
----

Hopefully, this information will help any people who needed a better way to organize their hectic seizure-life!

(Keep in mind on the images, I had to edit them really fast. I keep copies on my desk and color on them as needed, my computer copies aren't as fancy if no time was invested!)

not seeing any images. Am I missing something?

M

Should be working now, sorry about that.

Ellie,

I just looked at the body charts you posted for hurtsobad73. I printed off a copy of both the color/blk&wh. These will be extremly helpful. I am still having episodes, mainly auros and blank stares, random jerking movements of extremities, feeling of fluttering, and bubbles shooting out of heart which sometimes will make me cough. I know nuero said he believed my seizures were caused by stress and or hormones,(having night sweats and hotflashes) but i have to say I don't know that I would agree with him. Many unexplained symptoms and illnesses over past years that I believe are linked together. Some of the things that I have been told are: Lupus, early onset Parkinsons, Encephalitis, ? MS. Could all be related to seizures???? Whenever you see someone different you get a different opinion.
I will keep records with these charts and see what happens.

Garney

thank you so much...

This will be very helpful. It is a great idea and I think will be very helpful in explaining to my neuro and headache specialist as well as the Epiliptic specialist I will be seeing what exactly I am feeling. Lately (within the last week) and I am averaging about 2 seizures a week. (No where near my dad who is at approx. 20 a day, he goes in for part 1 or 4 of brain surgery on the 14th.) Talk about stress and worrisome

But hopefully this will lead to some answers as to why I am having seizures as well. His started at age 36, mine 31. He is now 55, but living in a state where they are not to updated on medicine and he was an alcoholic so he went many years w/o taking his meds or drinking while on his meds. So who knows what has really been happening to him over the past twenty years. He stopped drinking over 11 years ago, but no one ever explained all the different types of seizures there were out there. I can remember my dad constantly staring off into space when we were talking to him and him not having a clue as to what we were saying. We were just kids and we thought he was just daydreaming. We would literally laugh at him, but now in hindsight, not so funny. I do the same thing, but my husband and son are aware of the different types of seizures. Sometimes I could just kick myself over things like that, but then I blame it on the medical system for not giving the proper information to my parents or us kids (I was 14 and older when these were happening, so I could understand what was happening, if it had been explained).

So for babbling I couldn't sleep.

Thanks again for all your information and suggestions. I appreciate them all and will use them to the fullest extent.

M