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Old 01-06-2003, 10:14 AM   #1
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zanamun HB User
Angry MVP and Epilepsy

I am new to the boards. I am usually a lurker, but need some opinions here. I am 30 year old mother of 2 (now 3) just recently took in a 14 year old neighbor because of abusive parents. I have no insurance but got covered on medicaid for 3 months because of low-income and the hospital stay. I recently went to the hospital because of SVT. (Heart racing) Mind you, I haven't been to the dr. since the birth of my 3 year old. I just dont' get sick and don't care for Dr's or medicine if I do. I believe it's just a big vicious circle if you get on one medication they have to give you another to take care of the side effects of the first. After numerous tests they diagnosed me as having Mitral Valve Prolapse. My MD said he wanted me to go to a neurologist because of Migraines and just weird out of it feelings I had been having. When I was a child up until the age of 17 I would have seizures that were brought on from heat, things like hot showers, curling irons or crowded places. I was never diagnosed as having epilepsy then, but went to the children's hospital and went through all the normal testing. They put me on some medicine that my mother took me off of. Think it was phenobarbitol. I can remember 4 grand mals and numerous weird feelings and voices when I was younger. These weird feelings and the headaches are what prompted the dr. to send me to a neurologist. The EEG came back abnormal and he said something about frontal lobe? Diagnosed me as having epilepsy, told me the laws about driving, asked me how I was going to afford medication and then what I wanted to do about all of this?!!!! My medicaid ran out 12-31-2002 and now he's telling me this! He said he wants to put me on tegretol because it is more affordable, but what about all the testing and crap? I kind of feel like I need a second opinion considering the newly diagnosed heart problems and the fact that he walked into the room and told me that normally it was a 1 hour consultation, but since I was late it was only 30 minutes and he had to get right to the point. I don't care to be on any medicine at all as a matter of fact I weaned myself off the beta blocker the cardiologist put me on. I haven't been feeling good lately real lethargic kind of out of it and have been having the aura's I use to have before a grand mal, but no grand mal yet! What do yall think the chances are of me having a full blown seizure vs. just the aura's continuing. I have been under a considerable amount of stress lately and think if I chill out for a while things will get better. How will I get my license back if I refuse treatment? Any help is appreciated. I know I rambled, but can't think right now how else to put my feelings and what all has happened to me in the last 3 months.

 
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Old 01-06-2003, 10:42 AM   #2
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Krazykcio HB User
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Hi Zanamun,
Wow....sounds like you are dealing with a mountain! The first thing I'd do is to sit down and prioritize. You need a good M.D. that is willing to accept small payments, like $10.00 a week. Be honest with the Doc about your finances. My 22 year old son has no health insurance and I made the same suggestion to him, and he's found that most Docs are willing to be patient about money stuff. Next, you need to sit down with that Doc with a list, and have the Doc address each item on the list, and make recommendations. You cannot randomly stop taking your medications!!! You have young children that depend on your care, Mama! All this stress is probably causing the auras, and will undoubtedly cause a grand mal if you don't get it all under control. Last, but not least, keep in touch with everyone on this board. You will receive support and information. Please take care of yourself. Kathy
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Old 01-06-2003, 11:09 AM   #3
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Thanks Kathy,
I have given some thought to the stopping the medicine thing but the auras seem to be better since I stopped taking the beta blockers; which makes me think it may be something to do with low blood pressure instead of epilepsy, but the feelings are the same ones that I had when I was younger so it kind of scares me too. I just feel like I need an unbiased Dr. to look at the cardiology results, the neurologist's results and all the blood work done by the MD to get a big picture of everything instead of being under the care of 3 different Dr.'s But being broke and no insurance I can't be too picky. Let me add that I have allergic reactions to things all the time. Bad allergic reactions to the point of getting eppi shots at the ER. Some of these things have been medications that were given to me for child birth pain and sinus infections, so there is another reason that I don't care to be a guinea pig to these medicines he wants to put me on. The last allergic reaction I had was so bad they said I may not make it to the ER next time.

 
Old 01-06-2003, 03:17 PM   #4
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My daughter also has problems with her heart racing - which I personally think is caused by her seizures. If you look up partial seizures, it is listed as a symptom of partial seizures. My neighbor's child who is now grown but only had seizures as a child, now has heart problems. So you're right in that it could be related. I tried going without drugs for my child for about 6 months as she had a very bad reaction to the first drug the doctor tried and I was scared to try another as she has lots of allergic reactions to drugs most people can handle. I altered her diet - eliminating all sugar in any form, and very low carbohydrates, no chemicals, dyes. Basically, it was meat, vegetables (low carb ones) and nuts and seeds. Only water to drink. This reduced her seizures from one day a week to one day a month, but they did not go away. In fact, though she was having them less frequently she was having a lot more per day. You've got some little ones counting on you, I definitely wouldn't take the risk of going drug free. My daughter is on Keppra and so far she only had a little hoarseness for about a week when she started it. No allergic or strange reactions like she had to the carbatrol. Do you have any family that might could be some help to you? Sounds like you have some serious medical conditions that needs to be looked at and monitored by someone - you don't want to end up in the hospital for a seizure or heart attack. Medicines aren't all bad - antibiotics have saved a lot of lives. Please take care and keep us posted.lazoo

 
Old 01-06-2003, 08:17 PM   #5
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Hi, I agree that you need one Doc to oversee everything, but I wish you'd stop worrying about the expense as much as you do. After all, your primary worry should be taking care of yourself so you can be the best mother you can be. If you can't pay your medical bills they will be forced to take small payments from you. You have every right to be picky...you only have one life! If you don't advocate for yourself, nobody will. Here's something to think about.....if one of your children had the same medical problems you have, what would you be doing? My guess is that you would stop at nothing to find the best care possible for them....right? Why are you less worthy?!? Get on the horn and find the right Doctor, and take her/his advice!!! Be well, Kathy
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Old 01-07-2003, 12:41 PM   #6
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Hi Yall,
Lazoo, it is interesting to note that your daughter has heart racing and severe allergic reactions to normal stuff just like I do too. I did a search on partial seizures and seen what you were talking about it being a symptom. My heart was going 197 beats a min. at the hospital. Is that about what your daughters does too? I mean what is normal racing and then not normal. I wonder if I get on some seizure medicine if my heart will stop going crazy. I haven't had a bad racing spell since the hospital stay, but have noticed flip flops and weird feeling in my chest. Oh well. Time will tell.
Kathy thank you for the slap back to reality about me having to take care of my kids and all. I need a wake up call every once in a while. I know if it was my kids that I would find a way to get the best care for them, I guess I just feel I am not as important. I know I am, not on a guilt trip or anything, just didn't realize. The doctors that I have talked to say if you don't have insurance you must pay for services up front. I have asked. So basically if you don't have the money you don't get the treatment, then what?? I have my follow-up neurologist appt. tomorrow at 11 and was told to bring $67 with me as they knew that I no longer was covered by medicaid. When the Dr. told me the diagnosis of epilepsy I freaked out and don't remember much after that other than frontal lobe, abnormal eeg and all the horrible meds and their side effects and the cheapest one was tegretol and that is what he wanted me to be on. I left said I would have to think about it and scheduled a follow-up, NOW< what do I need to ask, what should I find out? I have no clue and know that those experienced will. Any help appreciated..it sure does help to talk to someone that knows what I am going through.thanx yall

 
Old 01-07-2003, 05:50 PM   #7
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Hi Zanamun,

I'm glad you are seeing that you are just as important as your kids....but I am so sorry that the Docs are being such jerks about payments. Do you have any family or friends with $$$? If so, you need to swallow your pride and ask for financial help. (Remember....you'd be stopping at nothing to find the best care for your kids...you deserve the best too!)

As for the Neurologist tomorrow...
*Bring a list with your questions/concerns.
*Ask what type(s) of seizures you are having.
*Ask about safety steps you should take (medic-alert bracelet, Lifeline etc.) Remember to tell the Doc that you have young children.
*Ask Doc how often you will need your blood levels checked.
*Ask what drug side effects to watch for, and which should be reported right away.
*Ask if the tests (you already had) showed the reason for your seizures, and if you are a good candidate for surgery.
*Ask if you can call his/her office if you have more questions. If the answer is no...find another neurologist!!! YOU DESERVE THE BEST TREATMENT AVAILABLE!

This is all pretty scarey, but you can find alot of support here. As for money, have you considered applying for Social Security Disability? (SSDI or SSI) With your health care needs you may be eligible. You may qualify for Medicare or Medicaid. Ask your Doc about that too. Or, do a computer search for Social Security. Then click on Disability.
Good luck at the Doctor's tomorrow. Please let us know how everything went. Try to bring a friend or close family member with you. I find that I forget half of what the Doc says, and I have to ask my "chaperone" Take care, Kathy
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