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    I need serious help
    An_257168 posted:
    I am 41 and have just found out I have epilepsy, though not because my neurologist told me. She doesn't like to"label" me. Because of this, she has not disclosed a diagnosis. This is what I know:
    The EEG show seizure activity starting in my temporal lobe region and spreading to my whole brain. The MRI showed I have a "spot". Yep, that's what the Dr called it, in the front of my brain. I have been out of work for almost 2 months now, on my 6th medication and have only gotten worse. I have private insurance but they just denied me because of my dr.
    I am a single mom about to go live in a tent. I was an executive! The epilepsy foundation has a 4 month wait list. Any suggestions?
    dancer86442 responded:
    Hello An,

    Something isn't Rite! But, I am sure you are already aware of that. Ok, she won't label you. I Can. You don't have Epilepsy. You have what is known as a seizure disorder. Yes, there is a difference. Yet, the words actually mean the same. Confusing, huh? Your seizures have a known cause. The spot on your brain. I can only say your Dr should be all over that spot on your brain. But, then again, maybe, because of it's location it can't be surgically removed. Hoping meds will help. As long as the spot doesn't get any larger pills may just do that. But, it is a Long drawn out process for some, to find the rite med.

    But, you want advice. Not plausible explanations. So, my suggestion. Get a Lawyer! File (like it or not) for SSI &/or Disability. Visit your Human Resources for Help! (What my town calls Dept of Economic Security.) I would Think that since you are 'jobless' that they could/would provide assistance. Hopefully, they will be able to get you in to see another Dr & get a second opinion, too. I Wish you could Sue the First DR. But, not sure if you would have a case. But, that would be a question for your Lawyer. Ask the Epilepsy Foundation about their Lawyer assistance program. The Jeanne Carpenter Funds.

    Another thought. Find a Teaching Hospital in your area/State. You may have to travel, but, at least you can get in to see Drs & get proper treatment. They do charge on a sliding scale basis. Should be $0 but they may charge a small fee now. It has been a Long time since I have been to a teaching hospital. But, your meds should be free!

    Medications. 6 in 2 months is not rite! It takes at least 2 to 6 weeks for any med to work properly. Now, That may qualify as Dr malpractice.

    Please, keep us posted. I do hope this has helped some. Hugs & God Bless!

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    smaugreflects replied to dancer86442's response:
    Thank you Candi! I feel so lost, and that helped. I can At least get a place to start my battle. And yes, it should be malpractice when she keeps upping and changing my meds. It caused me to go to the ER. My levels were just below the limit but I was due to take another dose. That is what caused me to titrate off the meds. I may still have seizures but at least I have cognitive function back, for the most part. I appreciate the support.
    This is a life changing experience. And scary when you don't have anyone in your life, except a little girl who is terrified of what is happening to us. You just made me feel like I am not alone. Thanks again.
    dancer86442 replied to smaugreflects's response:
    Hi smaugreflects,

    Alone? You are & never were alone. So, many ppl experience that feeling when diagnosed. I am glad I was able to give you advice that Helped. I was sooo unsure of how you would take what I had to say. My Experiences & that of others' has really taught me a Lot.

    Now, some advice for you about your little girl. Please, go to & look for books about Epilepsy. There are books for All Ages. Take note of names & authors & take them to your Local Library. Ask to see the Research Librarian. It is their Job to help you find the books you want, if they don't carry them. They Mite be in another Library & they can borrow it. Or they can find it in a discount book store. One for you, that has been recommended for over 20 yrs. Treating Epilepsy Naturally by Pat Murphy. Another that I have noted lately on Facebook. Epilpesy: Facts. Not sure who the author is. But, it should be listed w/ Amazon, too.

    Unfortunately, all our meds have side effects. What you experienced is pretty norm, too. Side effects &&& Dr upping & then changing meds. But, it is the only way to find what Works for you. They have no clue what will work for you & no clue how you will react. But, Still, she should have given you time to adjust to a med/dose, b4 trying another.

    In our Tips section, please read Journal Info & start one today!

    Honey, you need to Stop your seizures! Whether it is thru meds, alternative treatments ie: diet changes, or considering the Spot on your brain, surgery. Did your DR even Discuss surgery w/ you? Seems to me she should have! But, maybe she was hoping to get your seizures under control b4 mentioning the possibility. Not sure if that was Rite or wrong of her. I would say wrong & that she should have at least discussed it w/ you as an Option. But, control by any means, is Needed. Active seizures can cause you to do bodily harm w/out you even being aware of it! But, worse: Uncontrolled seizures can cause Serious side effects or even Death. Now, that is something Most Drs won't tell you. But, a Lot of ppl who have Lost loved ones or support Epilepsy Awareness, are trying to change That. I'm not trying to Scare you. But, you Need to Know! Do some 'Homework' about SUDEP. Sudden Unexpected Death due to Epilepsy/seizures. It is Supposed to be Rare, but, we lose 500,000 (if not More due to unreported incidents) ppl worldwide/yearly to SUDEP.

    As long as your seizures remain active, you shouldn't be driving, either. I'm sure you understand Why. But, something else to consider, you may have more than one Type of seizure & not even be aware of it. I'm talking about Auras &/or Absence seizures, here. Have you Ever noted that you 'lost' a minute or two, W/ no clue as to what was said or done, at any time? If your daughter is old enough, she may have witnessed some of those moments. Ask Her!

    I, too. was a single Mom when my adult seizures occurred. So, I Can Relate! But, I learned Kids are More resilient than we think. Please clik on my ID or pic to read my Journey.

    When first diagnosed: Scared, Lost, Alone (physically &/or mentally), Hating the Life changes is All Normal! But, I can truly say: This to shall pass! Keep asking questions! Keep Learning! Inform Trusted Friends of your status. Learn Proper Seizure First Aid for the various types of seizures. Tell others' how to respond Properly! That Includes your daughter.
    It truly Helps, Knowing someone is listening & Knows Exactly what you are talking about. Whether it's about seizures or just need to Vent, I'll be listening. Unfortunately, in our world of EP, those who Don't have EP, don't truly understand! But, then again, No one can walk in our shoes, no matter what Journey we are on. But, we Are here to walk along side of you. BTW: If you contact me thru Email, include WebMD in Topic, so I don't spam it. Lots of Hugs for you & your daughter. I know they are just Cyberspace, but, I hope you feel them. ((((( )))))

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    dancer86442 replied to dancer86442's response:
    Please visit Phylis is an amazing Journalist. She has Lots of Info for you, but, most Important, In her Menu note the list of Comprehensive Drs/hospitals recommended by others' w/ Epilepsy. Hopefully, one is in your area. You do not have to join to read her articles. But, if you do wish to join to comment or ask questions, let me know & I will contact her. Her site is temporarily 'closed' for accepting new members, as she had issues w/ a Stalker. Hugs again.

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    saxofone1 responded:
    Welome to the group. Candi has expresed many of my thoughts. She's wonderful. I understand you'r feelings of being alone. I was diagnosed with ep back in '75 during my early teen yrs.

    Do check out Amazon. I was recently on there and they have several excellent books for all ages.

    Meds take awhile to work so those quick changes were totally impratical as well as poor medical management.

    Please follow Candi's suggestions. You will never be alone.

    Love to your daughter. Happy Mother's Day to you.

    That wish includes you too, Candi
    dancer86442 replied to saxofone1's response:
    Thank You Angie. Hope you & your Mom had a good day, too. Lots of Hugs! Smau, Hope you had a very good Mothers' Day, too. Hugs to you & your Daughter!

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    hawiian_girl11 responded:

    I have to try this again. It ERASED my entire message while I was typing. I probably hit something. I was almost done too.

    I Was telling you, like candi told you that you are not alone. I have my own story as well. But can not think the way she thinks and can never think as smart as her.

    I have been on as many as 12 meds not at one time, up until the current 3 I am on now. 800 mgs of Lamictal--400 2 times a day, 200 mgs of Topamax--100 2 times a day and Fycompa--4 mgs @ bedtime.

    I hve been treated badly by several docs as well. Both we egos bigger than their heads. They called me a faker, and that my szs were all in my imagination. sometimes not in those words. It got pretty bad. But they were one step ahead of it. I was put into their EMU and treated really bad by the staff. They were trying to see if surgery was an option at that point but stopped just short of the wada test after they found 3 lesions on my brain. All of which were in the anterior portion of the left temporal lobe. I had 2 szs in there that they questioned and labeled as inconclusive and made the dude I have now mad so he ran his own test another run thru the EMU and I had 5 szs in 6 days. 2 staring szs and 3 major complex partial szs all of which had to be stopped with IV Ativan.

    Tegretol drugs put me in liver shut-down and I wound up in the ICU for it. which they thought was funny in their own sick way. my mom wanted to sue but didn't have the monmey to do so and told the family doc and he got me out of their and referred me to the one I Have now that I have had for the last 7.5 yrs.

    HE has given me a life. I have had VNS impanted to help with my szs, different meds, a run thru his EMU to prove my szs were real, a doc that doean't tell me I am faking it, he believes in me has encouraged me to be someone, takes the time to sit down with me explain things to me when I have questions, he comes up with the best answers he can get and when he doesn't have one he is honest about it. He doens;t hide stuff from me either and make stuff up.

    You need to find a new doc and get a second opinion. Even though the second set of docs were nasty to me they gave surgery as an option before ruling it out as can not be done.

    I hhave 3 spots or lesions which is why I can not have surgery you only have one which is why candi said it should have been offered to you. You could be sz free if it is in the right spot to be removed and not be made to suffer like you are.

    my daughter graduated in less than a month. she just turned 18 with epilepsy Grand Mal. I have Partial epilepsy And I lost my youngest when she was 13. She would be 17 today if she was still alive. I now live in Honolulu, Hawaii.

    I still come back to PHX where my doc is to be treated every 3 months. I get to see my mom as well.

    qwell I better get going.

    smaugreflects replied to hawiian_girl11's response:
    Thank you all and Hawiian Girl, for doing it twice! I know that there are times when getting the words out for me is so very hard, so I appreciate the effort and your sentiments. I am sorry for what you have had to go through. and appreciate you sharing. Congratulations on your daughter's graduation! She must have gotten her strength from her Mom.

    Here is the latest:

    I do not have convulsive seizures where I lose consciousness. I have muscle twitches and the meds can put my whole upper body into some spasm but I never have lost consciousness. What happens to me is: my eyes become very heavy feel like they weigh 100 lbs, my face goes very slack, like I lose all strength to hold my face up, and then I get shooting pain/pressure in my head. I become dizzy and find it harder and harder to speak. There are variations on this, such as just the twitching, or just the eye/face pain, or I just can't get the words out. I can usually type them out pretty well, unless I am having a real bad day. The problem is, it's the computer that is a huge trigger for me, so i try to limit my time on here.

    I read the MRI report for myself and found out that my Dr is nuts. She told me I had temporal sclerosis which just didn't fit to me. I read that the lesion is in the deep left frontal lobe. That makes more sense considering my symptoms.

    I have switched Drs but am now on a waiting list with the Epilepsy Foundation to help me get the treatment I need. So there's good news.

    I have talked with my daughter about what to do if I do have a convulsive seizure, explained that some of the meds make me do some funny things, like one made me rage at everything. There was no controlling my emotions. She doesn't quite understand about my needing sleep. I have never been the type to shy away from getting promptly up in the middle of the night with her, or staying up late. I used to get just 4 hours of sleep a day, and now I require more, so she is adjusting.

    I am now on the lowest dose of Keppra until I can get into my new Dr, in 5 months. I have better functionality but get seizures more as well. I know about the elephant in the room, but don't know what else to do. I am looking into the diet changes. In fact, I was on the Ketosis diet from a weight loss Dr. but when I got off of it, was when my seizures hit me like a freight train. I get them in clusters that can last hours or days and leave me exhausted. I was just journalling my seizures but now I am going to journal my journey. That should help and thanks for the idea.

    Ladies, you are wonderful and I appreciate all the advice. It helps so much! (sorry for being so long winded!)

    anthonybrownii responded:
    Get yourslef a disability Lawyer because they usually deny the first two and get in touch with an epileptologist who can understand but even some of them act like it isn't a big deal but if they said Cancer they would act like it was sorry that's my view but I hope you get the help financially ,medically and supportive because this is a journey in which has many hills some high some come down hill with curves I've had Epilepsy since 1970and still Dr's act like it is new
    smaugreflects replied to anthonybrownii's response:
    Thank you so much for the input. I have contacted an agency for help, but my private disability company is the one I want more and they are so strict! I agree with you about the cancer. I have so many relatives who have suffered from it, and everyone jumps through hoops for them. This feels just as arduous and life altering but no one cares. I am not diminishing cancer at all, but I wish we could get ppl more aware of OUR struggle.
    dancer86442 replied to smaugreflects's response:
    Hi again,

    Reread our comments & noted in your last that you were on the Keto Diet for weight loss, w/ fewer seizures???? Went off diet, Increased activity. OK, then Diet may just be the answer for you. We can Hope! Issue: Finding a doc who Agrees. You may need to see a Naturalist/Homeopathic or Nutritionist. I understand that someone qualified to assist you w/ your Diet IS needed. These diets can rob you of essential vitamins/nutrients. So, you need to be Watched/monitored. But, if it works, at least you wouldn't have so many Issues w/ Meds.

    Thanks to Facebook, We are getting Some publicity. It's a long uphill battle that so few want to join. Problem: more ppl want to discuss the problems w/ Epilepsy/seizure disorders, rather than go Public w/ them. I try telling them: They don't have to go public to just print & hang up fliers at schools, stores, workplaces, etc. Want to go Public?? Go to a School & talk to an assembly? Get Kids involved in raising awareness w/ bake sales or walks/runs. We need More Public Advocates, that's for sure.

    Hope you are doing better. Good Luck w/ the Disability. Hugs

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.

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