Can someone help me? I don't understand this.

[Buffheart]

So I just got off the phone with one of the regional Epilepsy centers. Because of my insurance I have to have a referral from my doctor saying that I need to go there, so I had my doctors office fax something to the Epilepsy center. Well I called the woman at the Epilepsy center (who wasn't very nice, BTW) and she said that my doctor referred me because of headaches, which I think are caused by seizures, or maybe are causing seizures. Or maybe the headaches are the seizures. The woman none-to-nicely told me that they don't treat headaches, only seizures, so she told me I have to go see their headache clinic first. I tried to explain that I have other seizure like events that aren't headaches, but she just seemed really annoyed. So I don't understand. Why do I have to go to the headache clinic when it seems the headaches and some of the seizure like events are tied together? If my doctor hadn't put "headache" as the referring symptom I probably would have gotten in, but I don't see why that makes much difference. I tried to ask the woman, but she was clearly annoyed and didn't want to be bothered. So what should I do? Should I go to the headache clinic and try to get them to refer me to the Epilepsy clinic, or should I go to another Epilepsy center? Because the woman wasn't very nice I kind of think I should try someplace else, someplace where the people seem nicer, but I would like opinions.

 

[Nakamova]

Can you get your doctor to re-word and re-send the referral so that it's clear that seizures are the symptom you're being referred for? And/or can you ask to speak to someone else at the Epilepsy center who might be more understanding? I would give those tactics a shot before trying out another epilepsy center, if only because there's no guarantee that the next epilepsy center will be any better. Sad but true.

 

[Buffheart]

I am pretty sure only one woman does the scheduling at the center I called, so I am confident that no matter when I call I will only get this woman. Maybe tomorrow I will call my doctor to see if he will re-word his note or whatever he faxed, but I just wanted to get some opinions first to see if anybody else had another suggestion.

 

[momof3boys]

Can you get your doctor to re-word and re-send the referral so that it's clear that seizures are the symptom you're being referred for? And/or can you ask to speak to someone else at the Epilepsy center who might be more understanding? I would give those tactics a shot before trying out another epilepsy center, if only because there's no guarantee that the next epilepsy center will be any better. Sad but true.

I agree, I would call your dr up and ask them to reword it and fax another referral over to the epilepsy center.

 

[msuder0583]

Well if you can't, request to be put on Topamax because it is used to treat both migraines and epilepsy. Since I have been on Topamax (couple years now) the only headaches I have ever had are post tonic-clonic

 

[Rae1889]

Well if you can't, request to be put on Topamax because it is used to treat both migraines and epilepsy. Since I have been on Topamax (couple years now) the only headaches I have ever had are post tonic-clonic

There are alot of factors that need to be considered before someone goes on Topamax for any reason. The side effects of the med can affect certain types of people more. Pregnant women, people prone to glaucoma and people with bad blood pressure are advised to not take it.

What works miracles for one person could be hell for another

 

[msuder0583]

its far from a miracle drug for me. the side effects are horrendous, but i just know that it does both of those things plus i figured the doctor could go over the specific factors with him/her before prescribing it. just an option i suppose

 

[Buffheart]

Well I just called my GP back and everybody is being so rude to me. The woman at my GP's office said I am not allowed to go to any of the Epilepsy centers because of my insurance (which is Tricare), but the woman I talked to yesterday who works at one of the centers never said anything about them not accepting my insurance. The person at my GP's office said that the Epilepsy centers only accept "big" cases, whatever that means. Basically (it sounds like) because I am not having "big" seizures everyday nobody will help me. And I can't get even try to get into another clinic without having to call my GP for another referral. Why do people feel they can be so rude to me?


So what am I supposed to do? I am especially concerned about driving. Can someone tell me what do to next? Do I simply give up? Would making a list of all my symptoms help?

 

[msuder0583]

Big seizures? Wow...they sound like a really intelligent medical staff. What exactly do they consider "big" cases or "big" seizures? I mean I have tonic-clonics but if you're driving, absences can cause accidents just as much as a t/c. First of all, my assumption is, until you get an insurance they accept, they will run you around in circles. Second of all, alot of people keep seizure diaries (I don't personally cause I don't have enough - maybe none one year, five the next. all depends) but you definitely wanna document it.

 

[Buffheart]

I don't know how to get another insurance. I have been looking for a job for months.

 

[msuder0583]

Yea I can't get private insurance and since I'm a full time student and only work part time I only get crappy group insurance through work. Maybe you should try somewhere else unless someone else has any other ideas.

 

[Buffheart]

If I put together a list of all my symptoms will somebody read it? Before I continue on I would like reassurance, despite the fact that I have had numerous people say it sounds like seizures. And I will probably switch doctors. I went through a really rough patch a year ago and my GP's office basically did nothing to help me, and now they all stare at me whenever I stop by, like I am some kind of freak.

 

[msuder0583]

I'm no expert, but I can try...

 

[Nakamova]

If I put together a list of all my symptoms will somebody read it? Before I continue on I would like reassurance, despite the fact that I have had numerous people say it sounds like seizures. And I will probably switch doctors. I went through a really rough patch a year ago and my GP's office basically did nothing to help me, and now they all stare at me whenever I stop by, like I am some kind of freak.

We will read and respond...

 

[Cint]

If I put together a list of all my symptoms will somebody read it? Before I continue on I would like reassurance, despite the fact that I have had numerous people say it sounds like seizures. And I will probably switch doctors. I went through a really rough patch a year ago and my GP's office basically did nothing to help me, and now they all stare at me whenever I stop by, like I am some kind of freak.

Has your GP ordered an EEG or an MRI to determine if you're having seizures or not? If so, that should be able to get you in to see a neurologist.

Years ago, I started out by seeing a GP for what were at the time CP seizures with occasional TC's. They gradually became worse and he referred me to an epileptologist at an Epilepsy Clinic. Usually patients are referred to those clinics if they're going for drug studies, brain surgery, VNS, or other types of surgeries and have refractory epilepsy. I've been there, done that. Tried many drugs, had a left temporal lobectomy and then the VNS and still have an occasional seizure, but not like they once were.

For some good info on doctors:
http://www.epilepsy.com/101/diag101_best

 

[Buffheart]

Sorry for the delay is response but my brother has been in the hospital. Anyway, today I called another local clinic and it was the total opposite of my previous encounter. The woman I talked to said they take all cases "big" and small (unlike what my GP said). They can test for Epilepsy as well as treat it (obviously). They prescribed medication, perform EEG's everything. Actually I already kinda have an appointment with them after just one call. I still have to get my GP to send a referral, but the woman I talked to agreed that my GP's office was totally wrong. My appointment is on September 7 with a neuro who I later found out is recommended by several other Epilepsy patients. Unfortunately that is the earliest appointment they had for new patients, unless someone cancels. I think what I'm gonna do is type up that list and bring it to my appointment so I can show it to the neuro.

 

[Endless]

:clap:

 

[Nakamova]

Sorry for the delay is response but my brother has been in the hospital. Anyway, today I called another local clinic and it was the total opposite of my previous encounter. The woman I talked to said they take all cases "big" and small (unlike what my GP said). They can test for Epilepsy as well as treat it (obviously). They prescribed medication, perform EEG's everything. Actually I already kinda have an appointment with them after just one call. I still have to get my GP to send a referral, but the woman I talked to agreed that my GP's office was totally wrong. My appointment is on September 7 with a neuro who I later found out is recommended by several other Epilepsy patients. Unfortunately that is the earliest appointment they had for new patients, unless someone cancels. I think what I'm gonna do is type up that list and bring it to my appointment so I can show it to the neuro.

That is terrific! Amazing the difference from one doctor's office to another!

 

[Cint]

That is terrific! Amazing the difference from one doctor's office to another!

Yep, that is amazing, but unfortunately, that's the way it is.

Buffheart, glad to hear you found someone who will take you "under their wings".