Breakthrough szrs and long appt wait

[RainbowBrite]

I've been having breakthrough seizures (since the 9th) and can't get an appointment until the 29th of this month. I was inpatient and the neurologist upped my Carbatrol to 800mg from 400mg a day but it's not making a difference. I'm not sure what to do, as I'm having around 3 seizures a day. I just got out of inpatient and the neurologist there (who is now my new outpatient neurologist) told me my problem is a ongoing outpatient problem and not an acute inpatient problem. I don't know what to do. There's no way to get to this neurologist any sooner (he works in the hospital I was at and also co-directs the stroke center so he's busy). I'm getting exhausted as I have other physical problems on top of the seizure disorder that are going wrong. I'm not sure what to do as Urgent Care facilities don't accept my secondary insurance so I have no where to go. My mom won't take me to the ER as she is angry with me having seizures. Also, when I went to the ER for the breakthrough seizures they told me there was nothing they could do but refer me to my outpatient neurologist (I've been having complex partial seizures). Any advice?


ETA: Already on 1500mg Depakote ER, 800mg Carbatrol (400mg BID),and 1mg Klonopin AM,2mg PM :'(

[momof3boys]

If youre having seizures three times a day, they shouldnt just let them go and wait to see you. That doesnt sound right at all. have you thought about looking around for another dr? I have complex partial seizures, and Im on Keppra XR 3000mgs a day, and Carbotrol ER 1200mgs a day. In November of last year, I had break through seizures when my dr increased my Keppra to 4000mgs a day, and after a few weeks, I started to not feel right and had two break through seizures while I was home alone with the kids. Just hearing about those two times, my dr got me in to see him within a week. The dr that increased me, he wasnt there no more, and I got put with his partner, and he is the best In my opinion.

Your mom shouldnt be angry at you for you having seizures. There is no way you can control the seizures. Its part of having epilepsy. She needs to support you and help you in any way she can.

If you ever want to talk, Im here for you.

[sbncmo]

Hi Rainbow,

Sorry you are having to deal with so much. Actually you are getting into your neurologist a lot sooner than I was able to get in with my epileptologist. I ended up in the ER in Dec with a series of different seizures and I won't get to see the epileptologist until late Feb. I know it is frustrating switching between neurologist's. I've been there too. My 1st neurologist stopped seeing me because he went into in-patient treatment only. My current neurologist feels I'm beyond his abilities to treat which is why he is sending me to an epileptologist.

I'm not having break-thru seizures. I have seizures almost every day, sometimes several a day. It's very frustrating. I've been on almost every anti-epileptic drug there is, but can't handle them. I'm currently taking Vimpat, which was just increased, but it only treats certain types of seizures, which is common with all anti-epileptic drug's.

I also have a lot of other health problems. Sometimes it seems like it is just too much to handle. I could list off at least 20 different health issues I'm dealing with, some of which are extremely painful, some are emotional. I get tired of it, but what can I do?

Why is your mom mad at you for having seizures? That is something totally beyond your control. I hope you have others that can encourage & help you in whatever way you need, such as getting to the hospital.

As far as treatment in the ER, there are a couple of "emergency" seizure meds that can be given, but only if the seizure is not stopping. If your seizure has stopped when you get to the ER, I'm afraid they can't do anything else at that time.

I know the 29th seems like a long time to wait, but it is only 2 more weeks. In the meantime, just be cautious. If you have someone who can stay with you to keep an eye on you, that would be great. Hang in there. Two weeks will be over before you know it. I still have to wait 6 weeks!

Shelia

[Endless]

Rainbowbright,

You DO need to be seen, and soon. complex partial's can be dangerous if you are wandering around. Four a day is completely out of control. Have you called your neurologist's office and talked to his nurse, explaining the situation and how you are feeling? She'll relay a message to the doc and he'll either give a change in orders/meds, or tell you to come in. They keep a certain number of appointments blank every day for emergencies. If they can't fit you in, ask if there is another neurologist in the same office that can fit you in, until your appointment with your current neurologist later this month.

[Nakamova]

How about your regular doctor? Any chance you get a rush appointment with him/her? Sometimes they can be more persuasive in getting your neurologist to pay attention.

[RainbowBrite]

That's the problem...he *knows*..he knew I was still having seizures when I left the hospital. I think he didn't understand that I had been mostly seizure free since '09 when diagnosed. I don't blame him as my memory sucked and I was the only one relaying the history. I was at the hospital where I was diagnosed w/ E in '09. It seems almost impossible that with all that medicine, especially w/ the benzo on board, even though I kept telling him I thought maybe I had become resistant or one of them had stopped working. The problem is I take those meds for bipolar disorder as well and he'd have to work with my psychiatrist to fix meds. Now of course I waited until the weekend and there's no appointments...maybe someone can increase something ?.. Should someone answer because he works in the hospital (I don't know if he works weekends in the hosp.)? This hospital is 45 minutes away from my house, so it's not like going there is really an option anyways because my mom will get mad (I think she's mad because I went from "fine" to "an invalid"[her words]). I just feel so helpless... I don't expect much from him because I'm not technically a patient of his yet. I was only his patient inpatient for a consult. I'm just awaiting the appointment. I don't expect my mom to help keep me safe.... *sigh*

[RainbowBrite]

My Primary care doesn't work on weekends, is in a different county (I had moved and haven't found a new one that takes my insurance in this area yet), and I'd have no ride there anyways even if he was open. My mom now blames the Carbatrol, thinks I'm not having seizures (????)- she blames it on the dysautonomic stuff, and wants to change my blood pressure med. dose. I feel so darn hopeless here. If I even try to call the neurologist she'll hear me and be pissed and throw a fit

[RainbowBrite]

So I waited until my mom wasn't home and called the neurologist's urgent care line and they called the neurologist on call @ the hospital (who happened to have read my EEG while I was inpatient which was abnormal on *both* sides). They upped my Depakote ER by 500mg and ordered a home video EEG (which is going to embarrass my mom as our house is a dump, she's a hoarder) to see what's wrong, and if they find what they need then they'll order the video EEG @ the hospital where they take you off your meds. I'm glad I have the extra medicine now, but just had two complex partial seizures within 5 mins so I'm going to rest. Thanks for the advice guys.

[Nakamova]

Sounds like progress! Hope you can take it easy and feel better soon.

[sbncmo]

Hey Endless,

I sure wish prompt action & good communication came with my neurologist & his staff. I've had so much trouble with his staff. One time I called him & he had his nurse call me while he was standing beside her, telling her what to say to me, that I had to get off Keppra & get on Topamax. Three times during that phone call I told the nurse I couldn't take topamax, I'd had it before & had a bad reaction, but she never told him. I decided to try it again, but had the bad reaction again. When I saw my neurologist & told him about the phone call, he was upset with the nurse.

Another time, I was having a bad reaction to a med, called in on a Monday morning, she wrote the note & gave it to him, he wrote to get me in immediately that day. She didn't call me until after 4:30, too late to get in that day, but she did get me in first thing the next day.

In Dec., I had myoclonics every 2 minutes all day on a Friday & Saturday. Saturday's were more intense & painful. I called on Monday to find out what to do, but didn't get a return call. The next day, I ended up in the ER from a series of different seizures. His nurse called while I was in the ER to tell me he didn't want to treat me any more, that I was beyond his abilities & was sending me to an epileptologist. I told her I was in the ER at that moment - she didn't even acknowledge it, just said I'd be contacted when my appointment was set up with the epileptologist. I waited 10 days without hearing anything, so I called & was told that my information had just been sent in that morning. Then I asked if I was supposed to still keep my appointment with my neurologist the following week & was told yes (I think this was a different nurse from the one who called while I was in the ER). When I went to see my neurologist the next week, he didn't even know I'd been in the ER! A TOTAL lack of communication & apparently one nurse or the other making decisions on her own.

And my primary won't touch anything regarding my epilepsy, so it doesn't do any good to talk to her about it. And there are no other neurologist's in the area. My epileptologist is about 180 miles away. But my neurologist wants to work with the epileptologist, so I won't have to make a lot of long trips to see him. I've been on 13 anti-epileptic drug's, currently taking Valium & Vimpat, but they don't really control my seizures. But I don't run to the ER even tho I have several of them a day. In fact I'm in a myoclonic cycle right now, every couple of minutes, for about the last 45 minutes. The ER doctor told me to just take an extra Valium when that happens.

Anyway, getting to RainbowBrite - I'm glad you were able to get thing moving & start getting some help. So sorry you are having so much trouble with your mom. She is really in denial. Has she ever been with you at a doctor's visit? It doesn't sound like it or else she wouldn't be treating you this way. What ever happened to motherly love? I wish there was a way to make her wake up & face the facts, but if she refuses to take you to your doctor or listen to their reports, there isn't much that can be done. Keep hanging in there. I hope the increase in meds helps you.

Shelia

[Endless]

One time I called him & he had his nurse call me while he was standing beside her, telling her what to say to me, that I had to get off Keppra & get on Topamax. Three times during that phone call I told the nurse I couldn't take topamax, I'd had it before & had a bad reaction, but she never told him. I decided to try it again, but had the bad reaction again.

You've got to be kidding! It's a blessing that you are being sent to an epileptologist. Seriously.

Seizures every 45 minutes is way too much. It isn't quite status epilepticus, but it's close. The emergency doc is a dolt. If the ativan isn't stopping them, go back in to the ER.

If all else fails go to your neurologist's office and camp out. Bring lots of books and a lunch, and say you will just wait there until he has a cancellation or another type of opening. After about 5 hours of that they will probably find a way to fit you in, especially when you are seizing all day in their waiting room.

I'm so sorry you are going through all this.

[sbncmo]

Hi Endless,

Yes, I'm thankful to be going to an epileptologist, but I honestly don't know if he can even do much for me. After all I have 8 types of seizures & I've been on the 13 anti-epileptic drug's & they didn't help the seizures. IF my neurologist actually said that I'm beyond his capabilites, I'm thankful that he is humble enough to admit it. But, If it was one of his nurses making that decision for him, as has as been the case in the past, then I'm thankful to be getting away from her. Personally, I think my neurologist should be getting a different staff!

Yesterday was another difficult day. I've had 3 nocturnal seizures this past week. The first two didn't disturb my husband, but left me with bruises. Yesterday morning, at 2 a.m., I must have had quite a seizure. I woke up wth a huge knot on the back of my head & had my husband feel it. He said that at 2 a.m., he heard a noise & I was moving around a lot, but then I seemed to be awake & was talking to him for a minute, then went back to sleep. I don't remember any of it happening. Then in the afternoon, I started having cluster myoclonics hitting every couple of minutes, lasting a hour at a time. Then I'd have a break for maybe half an hour & they hit again. This happened 4 times. Later I had a few individual myoclonics. My myoclonics were my facial & leg muscles twitching, jerking, vibrating & a shocking sensation. Mixed in with all of this, my eyeball was twitching side to side for several minutes at a time.

I didn't go back to the ER with this because of what the previous doc said. But I've since learned that there is an emergency seizure med given by IV when seizures aren't stopping. I don't know why that ER doc didn't use it last time. To tell the truth, I don't trust any of our ER docs. I don't think they'd know their head from a hole in the ground! (Four years ago, on a Friday night, I took my husband to the ER with obvious signs of TIA. The ER doc sent him home saying he had bronchitis & follow up with our PCP on the next Monday. It ended up he had PE's. Our doc put him in the hospital that morning. He went into Code Blue twice during the night & lost 1/3 of his lungs. Our doc was furious because a test run in the ER showed positive for blood clots!)

Anyway, while I don't trust the ER docs & while my neurologist doesn't want to see me until after I see the epileptologist, I am still going to call his office tomorrow morning to let him know about this past week & hope that his staff gets the message to him immediately. He may not want to do anything, but I'll leave that decision up to him. I'm just so tired of messing with all this. I don't even know what to do about any of it any more.

Shelia

[Endless]

Sheila,

Being so fed up, confused, and exhuasted that we don't know where to turn is one of the hardest places to be.

I think we all need a vacation from seizures, meds, needles, tests, and especially, doctors.

I'll provide the tropical island and sandy beach, you can bring the drinks, and Rae & Nakamova will bring the cabana boys. I believe in a previous post we called it "club no-med." At least we can all go to bed tonight and dream about it.

[sbncmo]

Sounds good to me. We definately need a break! At least I've had a break today - I haven't had any seizures so far today. And for me, even one seizure-free day is wonderful.

Shelia

[s10sleeper]

I can understand exactly how everyone feels here. It is very hard to deal with seizures, especially here in Central Kansas, as the primary care doctors are clueless to it, the ER docs have tried to give me meds that have caused status seizures to me, and the neurologists have all referred me to an epileptologist as they are lost as to what to do.

Getting in with an epileptologist can be hard, as the closest one to where I live is over 200 miles away and I have no car or family in the city I live in. Since I lost my job back in June I lost my insurance and only have the medically needy coverage which helps with absolutely nothing, so now my primary care physician refuses care for me and tells me to go to the ER for help. The way I see it if it is not a life or death issue I am not going there. I got in to the First Care clinic, and found out they are the absolute worst doctors, they did absolutely nothing for my jaw issues that come from my teeth grinding due to my seizures. It causes severe pain and so I am not able to sleep and all they said is they will call an Ear Nose and Throat specialist to refer me. So life goes on I guess. For me to get in with my epileptologist takes a 3 month wait at a minimum around here. I am glad to have them though as the PA for the center gave me her email, phone number and pager number for emergencies.

I have been on a vast number of medications and currently am on gabitril, keppra, depakote and trileptal. I am also on many other meds to try to counter the side effects. Along with all of this I am in the clinical trial for the neuropace RNS.

It is very easy to get depressed when dealing with epilepsy and if possible, you may want to try getting in with a counselor if you can afford it, when I was able to afford sessions with a counselor it did help some. Best of luck to you.

[sbncmo]

Hi sleeper. It sounds like you are having a worse time than me in some aspects. I'm your neighbor - I'm in Missouri. Does Kansas not have a state insurance like Medicaid? That's what I have, tho for a while I was without it, but thankfully our clinic & hospital offered financial assistance & our income allowed us to get 90% deducted.

I'm glad I only have a 2 month wait for my epileptologist, but even that is too long when I have so many seizures & it's frustrating that there isn't one closer. Thankfully, my husband is going to take off work & take me to my appointment. I still haven't heard from my neurologist after calling to let him know about that big seizure over the weekend. It's the third day now since I called. I don't know if he doesn't care, doesn't know what to do, or if his staff just hasn't let him know about it. My family doctor, like yours, doesn't even want to touch the epilepsy, but wants the specialists to handle it.

You are on a lot of anti-epileptic drug's. I've never taken Gabatril - it has an ingredient that I'm allergic to. Keppra caused major problems. Depakote caused central tremors. It had to be stopped & the tremors had to be treated with Trileptal. I know many people will stay on a medication even when it causes side effects & will take another med to counteract the side effect, but I'm not one to do that. I'm not saying it's wrong to do that, it's just my choice not to do that. My grandfather was on over 30 meds at one time with that routine & could barely function. My mom stepped in, took him to a different doctor, got him off all those meds & he ended up on just a couple of meds that worked without the side effects. After seeing that, I decided I wouldn't go thru the same thing. And I've always been up front with all my doctors that if I have a side effect or reaction, they have to find something else because I won't take something to treat a side effect. Even so, I'm on a lot of meds, but that's because I have so many health problems to deal with. And some of my health problems are untreatable in that I can't take any of the meds used to treat them.

You mention RNS. What is that? I've heard of VNS, which I figure the epileptologist will suggest when I see him since I can't take any anti-epileptic drug's effectively. I know I won't have brain surgery because all my lobes are effected.

As for counseling, I've been seeing a counselor for at least 15 years. I have so many issues I'm dealing with besides the epilepsy. I had to stop seeing him for a year or so when I temporarily lost my insurance and when I started seeing him again, it was once a month, but now the schedule has improved to where I'm able to see him every 7-10 days.

Anyway, I hope things start working out better for you. I hope you can find some kind of financial assistance. It would make things easier to get medical treament. Let us know how things go.

Shelia

[RainbowBrite]

Have my appointment with the new good neurologist in 4 hours....Hope he has something helpful to say!! My mom is starting to believe now, I don't know what did it, but during a recent ER stay she explained what my seizures look like to someone else and what I take for them. So strange!! LOL. I don't get this woman! I'm hopefully moving in with a rehab aid sometime soon and she will deal with my physical problems much better than my mom does (she's overloaded with too many problems from all 3 of us kids living with her still). Anyways, wish me luck with the appointment today!! Hopefully he has ease of appt. making and such, because he's not exactly local to me (45 mins away) and I can't drive.

[Meetz1064]

GOOD LUCK!!!