Epilepsy Community

Welcome Dr. Radtke,

I am sure the members are as excited as I am to have you here on this board with us. I look forward to seeing your posts!

Take care,
Emma

Hello Dr Radtke,

My name is Candi & I want to Welcome You to Epland. I have been a mentor on this board for over 15 yrs. Having a DR aboard is NEW to all of us. I am looking forward to any input, advice or support that you can give the people who post.

Like you I work at educating & supporting others with Epilepsy. Except, I am not a DR. Everything I have learned started w/ my genetic family over 30 yrs ago & was broadened by the previous 'family' members whom I have shared this board with.

We hope you enjoy your stay with us. It will be quite an experience for you & us, I am sure. It's even possible you may learn a thing or two. But, I am counting on you to know as much or more then we do. It is said that know one knows exactly what we go thru, unless they have Epilepsy, too. I say "They don't know, because no one told them or they weren't interested in 'learning' more." You being here w/ us means to me that you ARE willing. I know I can appreciate that.

Thank You & HUGS!

Love Candi

Hi, my name is Danielle, I am a mother of three and i was diagnosed with ramsay hunt syndrome type 1 about a month ago. Two weeks after I was diagnosed I started having severe headaches, stiffness in one arm and hand to the point to where I cant move them, I was unable to speak and I felt spaced out. I told my doctor about my symptoms and was prescribed lyrica. During my research on the internet I discovered my symptoms were similar to having a seizure. At the moment I have no insurance so i am not able to see my doctor as often as i would like and when i do go to the doctor she doesnt give me a lot of information about whats happening to me. so i was wondering if u knew anything about rhs and epilepsy or anything i can do to help with these "attacks" i have been having. thanks for your time.=0)

Hello Danielle,

It's possible that the RHS has lowered your 'seizure threshold'. It will take at least 4-6 wks for you to know if the Lyrica is working for you. It needs to reach a steady level in your system & your system needs that time to adjust to the medication.

Phylis posted info/sites that can assist you w/ medical. Clik on 'See all discussions' on the rite & go back a page or two or use the 'search this exchange' using the words 'medical assistance.'

I know the Epilepsy Foundation does help those who qualify, if you are interested. http://www.epilepsyfoundation.org/ Another site you can chek (Yahoo or Google) is the Hill-Burton outpatient centers. They provide FREE to low cost care. There may be one in your area.

Plus, for ways to increase your 'threshold' w/ diet, please visit this site.

http://www.coping-with-epilepsy.com/

BTW: Now would be a good time to start a Journal. I will try to find the info Meetz posted so you can read about what to include.

Love Candi

Hope this helps. HUGS & please keep us posted..

Love Candi

Thank you sooo much for responding to me I have had such a hard time finding someone who knows about epilepsy. Its good to talk to someone who knows how i feel. i was wondering if you knew anything i could do to raise my energy level, because as i stated before i am a stay at home mom of three small children and it takes all my energy to function while im watching my kids, especially after i have had an attack. so any advice you have i would appreciate.

Hello Danielle,

You are very Welcome.I believe 'support groups' are the best way to get info. To talk w/ others who have been there, done that. I wish I knew a secret to raising 'energy' levels. Maybe the ppl on CWE have an answer for you. But, I see my Links did not shade so just type the main words into 'search' or in your URL to go to the pages I posted.

When I finally came out of denial I felt I couldn't raise my daughter & cope w/ EP. I was a single Mom w/out a job. So, she went to her Dad & I became a Nanny for my GF's children. (I didn't think it was fair to ask her to support me &&&& My child.) When I remarried, it was too late to help my daughter. I got a 'second chance' when I got PG w/ my son. But, by then, they finally had found a med/dose that WORKED for me. I still had to contend w/ the side effects of meds & any 'breakthrus'.. I learned to take a nap w/ my child. To leave the TV on the educational station &/or toons, when I needed 'peace'. I was fortunate that my son seemed to understand when I was feeling 'bad' & always played quietly &/or watched his TV programs. It probably wasn't the best way to raise him, but, he is now 21 & he survived. As did I.

If you think your medication is interfering w/ your 'quality of life' please inform your DR/Neuro. There are other medications/treatments that you can try. Scary, but, worth it, in my opinion.

Take care. Keep learning. Don't let EP rule your life.

Love Candi

Hi Candi, thanks for your advice sorry it took me so long to respond but i hadnt been feeling very well emotionally or physically. I am so glad that i am able to talk to you, right now you are my only friend everyone else just thinks im crazy.

I saw you mentioned my neuro but to be honest with you i havent seen one. so i thought if i told you more about myself then maybe you could tell me what steps to take medically bc i have no clue what to do. On january 19 i went to the er bc the left side of my face was paralysed, i was given meds and was misdiagnosed with bells pasly. the next day my ear was swollen so i went back and was given two more meds and referred to a family practice doctor. two days later i saw that doctor and was diagnosed with rhs. two weeks later i had been having szrs and was prescribed lyrica over the phone. no info no follow up, all the info i have gotten about my condition has been through my own research through the internet. so i am cluessless about what doctors i should be seeing. do you have any idea what i should do. this whole situation is sooo fustrating if i had insurance maybe i would have been treated better or atleast i could find a new doctor. Anyway thanks for any info you can give me.
Danielle =0)

I started having fervile convulsions as a baby and was put on phenobarbital for the first 5 years of my life and then again when I first started my menstral cycle as a teenager. At the age of 13 I was completely off of the phenobarital and led a perfectly normal life. At the age of 18 I was in a car accident in which a school bus made a left hand turn in front of me. About one year later I started having auras, I went into my family doctor who could not find anything wrong with me. I had my first child at age 22 where after 23 hrs of labor they had to do a C-Section. At age 23 I had come down with a very bad cold/flu and just completely passed out. I was in the hospital for 5 days were at first they thought that I had had a nervous breakdown; a doctor there said that I had epilepsy. He started me on Dilantin were for 20 yrs I had no problems whatsoever, and then here they came again and now I have tried so many different medicines and nothing seems to work, currently I am taking Keppra and Depoke. I had had so many EEG's and CT's and NOTHING shows anything. Please help. Debbie

Hello Debbie,

Welcome to Epland. Over the yrs I have found it is not unusual for seizures to go into remission & reappear later in life. Your seizure threshold (Everyone has one ) was possibly lowered again when you were ill. Mine returned after a blow to my head.

I went w/out 'episodes' (convulsions) for over 20 yrs. I wasn't diagnosed as a babe/toddler. Everyone assumed I had outgrown them. They returned full force at age 25. My 1st CTscan showed a shadow on my brain. But, followup MRI's showed nothing. It took over ten yrs to find a med that worked for me. Like you all my EEG's & MRI's were normal.

Are you aware that over 65% of Epilepsy patients are diagnosed w/ no 'known cause'? But, I am thinking, since DRS placed you on an AED (anti-epilepsy drug) at the start of your menstrual cycle, that it's possible you had 'Catamenial Seizures' (seizures caused by hormone changes) at that time. Do you keep a Journal? (See Tips to the rite) Have you noticed that your seizures increase B4 &/or during your mthly?
You said they have tried several AED's. Did they try Phenobarbitol's again? Are you seeing a Neuro Or epileptologist (seizure specialist) ? Have any of your DRS said WHY/HOW the 'hospital DR' reached his conclusion of Epilepsy?

Time & Patience. It will take both to find a med/treatment that works for you. Meanwhile do some 'homework' & educate yourself about EP & all it's aspects, including 'alternative' treatments.

My Sister finally achieved seizure control. A 'homeopathic MD' placed her on a high fat, low carb diet for her diabetes & when she finally told him about her EP he ran more tests. Hers are Catamenial & the addition of progesterone cream plus diet, worked for her. My daughter has Catamenial Seizures, also. Her DRS are still trying to find a med/med combo that works for her. They haven't suggested adding progesterone to her regimen.

Learn more & become your own advocate. You are the one who knows your system best & it does help to know as much or more then your DRS.

Hope this helps.

Love Candi

The DR who first said that I had EP had come to his conclusion after talking with my parents. Also, I had a part-hystr. 24 years ago, so I don't had menstrual cycles anymore. No I am not seeing a Neuro right now, EVERY TIME I GO TO SEE ONE THEY SAY THAT UNLESS I THEY CAN SEE SOMETHING THEY WILL NOT CONTINUE ME ON MY MEDS. AND I AM SCARED TO DEATH THAT SOMETHING WILL HAPPEN. As it is, I never know when one is going to strike. I may go days or a couple of weeks, but I always know that within a few days I am going to have one, no matter what.

Hi, my name is Richard,this is my 1st time on the exchange. I am 49 years old and have had a seizure disorder for about 10 years. My neurologist has had me on Keppra and Neurontin
for the last couple of years. In January, I suffered a mild stroke. This last Saturday, I had a severe seizure. Is it
possible that the two could be somehow related? Also, my
doctor is prescribing Zonegran as another anticonvulsant. Does
this sound like a good idea? Thanks for the input.

Hi Dr. Radtke,

My son was diagnosed with simple partial seizures at age five after being misdiagnosed for about a year. He is now seven and is having staring spells that we are concerned may be absence seizures. His MRI did not show anything abnormal and none of the neurologists we have met with can find a reason for the seizures. My question of you is do you recommend genetic testing to see whether there is a genetic link for his epilepsy? My husband is adopted so we have no medical history for him and to my knowledge there is no epilepsy in my family. I have been learning about personalized medicine lately and wonder if a genetic test would be a good thing for him. Thank you so much for your thoughts on this. Best, Melissa

Hi Danielle,

Are you still w/ us. I apologize for not answering sooner. I was giving the DR a chance to reply. But, he will be w/ us later.

I can't believe they prescribed an AED w/out tests/followups. ) Plus, over the phone???? WOW! You mentioned going to the ER. Was that a County Hospital? epilepsy.com has info about DRS/clinics, etc.

I would ask the family DR for a referral to a neurologist ASAP! Contact your Dept of Human Resources to see if you Qualify for medical assistance. The Epilepsy Foundation has 'financial aid' Resources, also. Browse thru the links I posted in Resources, to the rite.

Good Luck on your Journey

Debbie,

Please start a Journal. Plus, keep a cam corder handy & instruct witnesses on proper procedures for 1st aid & filming of 'episode'.

If need be consult an Epileptologist. (seizure specialist) Find a hospital near you w/ an EMU. (Epilepsy Monitoring Unit) They usually have one on staff.

I have been thru my share of Neuros. I understand how they can be. But, there are 'good' ones out there. Stay on the DR/med merrygoround. Opinions will vary, But, w/ Your Journal, an eye-witness &/or recording you will have 'tools' to prove your condition.

Continue to Educate yourself & others about Epilepsy. Knowledge is Power. Support is our 'comfort zone'.

Love Candi