Feeling like a burden - seizures and bipolar

I apologize in advance, I don't know how long it will be.

I am seeing a neurologist at Duke University on Monday, a seizure specialist. I started having a seizure-like episode last November, which oringinally caused my motor function to decrease. Normal CT scans and MRI. Motor symptoms eventually subsided, but the seizures became more frequent. They tend to be worse right before and during my cycle, when I don't get enough sleep, and when I am stressed. My husband, 2 girls, and I were living with my parents at the time, and my bipolar was all over the place. But my seizure symptoms were not worse when my bipolar symptoms were, it was definitely more connected to my cycles. My mom told me that she didn't understand my bipolar and she was too old to learn. . We finally decided we'd be better off impoverished in our own place than staying there, so we left in mid May. I had my last seizure the end of May, living with my parents was likely more stressful than I realized.

Until a few weeks ago, now the seizures have come back. I put myself under a lot of stress with trying to get our business off the ground, wasn't sleeping, which I think was both a cause and effect of my mania. In the midst of this, right before my cycle, the seizures started again. The first one was really bad, the next few after over a course of about 5 days were not as bad. I went about a week and a half without any, but started having more this past week, I believe those were about 2 weeks after I crashed down to extreme depression.

The point of this is when I see the neurologist, I know he is going to tell me not to drive. I saw a different neurologist back in late May, who was not a seizure specialist, but he didn't specifically tell me not to drive, probably because my husband had taken my keys the beginning of March, he had not let me drive since. But in late June my husband let me drive again, because I had been without a seizure for over a month.

However the only useful thing I do now is pick my girls up from school, take them to their extracurricular activities, and take them to medical appointments. I have plummeted into a deep depression, I don't cook, I don't clean, I don't want to leave my house (only time I do is to drive the girls around), and I don't even have the concentration to make much progress on the business, although my husband says I am still doing a lot. If he suddenly has to take care of the house and do all the driving for our kids, how is he going to handle that? My bipolar disorder has already made me a burden, I can't have these seizures make me even more of a burden. Especially since I'm just going to be told I am having them because I am crazy, as if being bipolar isn't bad enough.

And just seeing a neurologist for these episodes pisses me off, because I am just going to get blown off, told these are psychogenic, and basically sent on my way. I had seizure episodes like this 5 years ago, when I was in the midst of a bad fatigue and joint flare up (I have autoimmune symptoms too, but no real diagnosis). After a normal EEG I was told my seizures were psychogenic, I needed to see a psychiatric provider (hello, I'm bipolar, I already see psychiatric providers, I told her), yet was told I couldn't drive for 6 months! So...she didn't think my seizures were real, yet I still couldn't drive? B.S. I went back to work and back to driving 3 months later.

But these seizures that started last year have been MUCH worse. I had them so often, many times back to back, they give me migraines, and this tied to my cycle thing is new. However, I am used to being blown off. A neurologist I saw last October before my seizure (because I had developed tingling and muscle weakness in my arms) would not see me after I had my seizure, and said my seizures were psychogenic, even though he never asked me a single question about my seizures! I just cannot take being blown off.

The Duke neurologist I saw in May was a movement disorder specialist, not a seizure specialist (because my stupid primary doctor's referral specialist wrote the wrong info on my form, SMH) but he was nice and told me it sounded like I could be having epileptic and non-epileptic seizures, but as soon as he mentioned me being at risk for non-epileptic seizures because of my bipolar disorder, I thanked him, then got up and left. Don't get me wrong, I DO NOT want epilepsy, but I don't have epilepsy, no one develops epilepsy in their 30's. I just want them to look beyond me being bipolar. I don't know if anyone else experiences this, but I get NO respect from the medical community once they find out I'm bipolar. If they don't know exactly why I have an issue, it must be related to that. Lazy excuse for doctors. My husband used to have migraine-induced seizures, and he was never treated like that.

But this will be a competent neurologist, and he will tell me not to drive, likely for 6 months. I can't do that, I just can't. I cannot live in a house where I contribute NOTHING, my husband deserves better than that. He has been so understanding, and so supportive, and so forgiving of my bipolar disorder, I don't deserve it. He deserves a better wife than me, my kids deserve a better mother than me, I just want to walk away from them all, hope he'll find a new wife, my kids will have a normal stepmother, and he can get his life back. He keeps tellng me he only wants to be with me, how bad it would hurt our girls if I'm not here, but I find that hard to believe. There would be a dark cloud lifted from our family.

I have been trying to keep myself together, trying not to think about leaving my family, but I don't think I will make it through this Neurology appointment. Not only will I be told I am crazy, but I will end up crying, because these seizures have been so devastating for me, so it will confirm I am crazy. And when I am told I can't drive, that will be the last straw. I am of no use to my family.

I think I channel my suicidal thoughts into thoughts of wanting to leave, because I see leaving as something that is much more likely to happen. At least I hope it will continue to stay that way, who knows. But I have nowhere to go. The one person who would have taken me in, one of the guys I met during my worst manic episode ever last year, I no longer have his number. He continued to contact me after I broke off contact (my husband found out about the horrible things I did and forgave me, though I never forgave myself) the last time being over this summer. But I'm nowhere near that manic anymore, I don't have that desire to see him. I erased his number (again) and I haven't heard from him since. Maybe he took my advice and finally found a girlfriend, but there is a part of me that hopes he will contact me soon. I need somewhere to go. I don't love him, barely like him, and have no desire to have sex with him, but I would do it if it gave me a place to stay. I'd have sex with anyone if it gave me a place to stay. THAT is how bad off I am right now. . But HOW to I get help? No one knows how to help me. Fortunately you can't be hospitalized for being a hypersexual inconsiderate burden who feels I need to abandon my family.

I'm sorry this is so long, I just don't know where to get all this out. I have one close friend, who I've known since we were infants, who tells me I am not a horrible person, who tells me I have a horrible disease, who has never judged me, who is always there for me...but I don't even know how to talk to her. I have never felt more useless in my life.

If you've made it this far, thanks for listening.

Thank you for sharing your story!! Your friend is right. There's nothing wrong with you.

You say, "If he suddenly has to take care of..." Part of you already knows that you are not a burden to your family and are needed. Its just the depression talking there. Focus on what you can and are doing and be proud of your contribution!

I am so sorry for all you are going through. I agree with what the others have said. I’ve fainted twice from meds, I could hear what was being said but could not speak to tell my loved ones I was ok.....it was very scary and I’ve worried they were seizures.....I think Abilify caused them and it hasn’t happened again since stopping the med. might one of your meds be to blame? Do you get warnings before you have them so as to know to pull the car over?

Have you been checked for migraines? Sometimes these seem like seizures, and what brings them on seems like it should be considered.

Some of the drugs to treat migraines are sometimes used for bipolar-like Topamax.

Thanks everyone. I probably was taking Abilify 5 years ago, when I first had these seizure-like episodes. Interesting thought. But I haven't taken Abilify in over 2 years. I have had that happen to me a few times, where I could not move, could not speak, usually when I woke up from sleeping, and it was terrifying. Thank goodness that stopped after ending the Abilify. I usually get an aura beforehand, but last week was the first time in a very long time that I didn't, it just came on out of nowhere.

I have been experiencing migraines for almost 20 years. I took Topamax for a while, but my migraines subsided, so it was stopped. I still get migraines, but usually one every couple of months or so, not enough to go back to a neurologist. When I felt a migraine coming on, I would take a bunch of Advil, lay down for a nap, and I'd be fine in a few hours. But I figure even if the neurologist knows nothing about these seizures, I want to get treatment for the migraines I keep having after these episodes. I feel like there must be some connection to my migraines and my cycles, beyond just being bipolar. I really plan to emphasize that to the neurologist, I hope he listens. I knew Topamax treated migraines and seizures, I didn't know it was used to treat bipolar too. Interesting. Maybe I can get back on it - no matter what is the problem, it may help something.

Lamictal is also used for seizures and Bipolar.

I have been told that. I already take 300 mg Lamictal though, although sometimes I only get in 150 mg if I forget my second dose. Other than several months I was on Lithium, I can't remember exactly when, I have taken Lamictal since I was first diagnosed 10 years ago. I don't even know if it has any effect anymore (for my bipolar). Now I remember, I was on Lithium for several months before the episodes started last November, because I was still on it when my pdoc left in December, and took myself off it (I know, not good) sometime before I saw a new pdoc in April. I've been on Lamictal again since then. It seems like I'm always on Lamictal, though I don't know how effective it's been in the past several years.

I have a diagnosis of Simple Partial seizures from a neurologist, but an epileptologist said it wasn't definitive based on what I described and all my EEGs, MRI, etc. If I have had these Simple Partial Seizures they were sensory or psychic. Not motor or autonomic. It was actually rare that anyone even saw these "experiences". Some of the "experiences" I had could have been seizure activity or mania symptoms.

I have taken a very large dose of Tegretol XR for about 6/7 years now. I also take a small dose of Lamictal. Both are antiseizure medications, as well as bipolar moodstabilizers. Since I reached a therapeutic dose of Tegretol XR (1400 mg for me) these so-called "experiences" ended. I actually now doubt that I ever had Simple Partial Seizures, but I'll never know for sure.

You describe your seizures as psycho-genic. Can you describe in more detail? When people think of seizures, they usually only think of convulsions.

I have bipolar type 1. Probably since age 14. I did not have the "experiences" I mention that led to suspicion of seizures until I was 38.

Usually with my seizures I experience an aura, similar to my migraine auras, in which I feel very nauseous, but the rest of my body also starts to feel "off", kind of a tingling sensation. Sometimes I get a bit of vertigo, my ears hurt on the inside. If I feel one coming on, I try to get on the floor and move breakable objects out of the way. I always try to stop it, try to take deep breaths to see if I can "calm" this odd body feeling down. But I am never able to stop it.

Then it almost always with a quick jerk of my leg, usually my right leg, then my other leg jerks, then both shake. Many years ago a neurologist told me I suffered from myoclonus, which is a sudden, short jerk of your body, often while you're drifting off to sleep. Happens to all people, but it was happening much more often than normal, so I was given Klonopin to take daily. It did help the myoclonus, but soon after I was diagnosed and given Klonopin for bipolar, so I never followed up with the earlier neurologist.

If not on the floor, I will fall to the floor. Got 2 concussions earlier this year from falling and hitting my head during a seizure. My entire body will have convulsions, and from what my husband tells me the are usually confined to my arms, legs, and torso, but I don't do too much rolling around. I don't actually remember much about the episodes, other than my eyes are often closed, but they sometimes roll back and are open, when I remember seeing light. Somehow this is significant, but I don't remember why. Most of what I remember is afterwards during what I call my "recovery period". Afterwards I lay on the floor, usually have a little bit of a hard time catching my breath. I am exhausted, too exhausted to move. And I always start developing a migraine - always. I start being disoriented during my recovery period, which can last from about a minute to maybe up to 10 minutes.

Then after that, sometimes I am a little disoriented, have problems thinking, getting thoughts together, talking, remembering. If I am very disoriented, like I was after one a few weeks ago, I was disoriented for about an hour, and I don't remember any of it. Other than at one point I couldn't remember my children's names. My husband knows more about what happens during my disorientation. Sometimes I have these back to back, up to 3 or 4 on occasion, I just have a shorter disorientation period.

That's about it, hope that is helpful. At least it gave me a chance to summarize tons of notes I've taken over the past year. I don't know they are psychogenic, I have just been made to think everything is. I think something else may be going on, although I doubt it's epilepsy, I don't see how it could be. Hopefully this neurologist will care enough to listen to me.

Your story made me cry so hard......I am so, so sorry. I am so, so ANGRY at your doctors for not helping you acquire more concrete answers. I relate all too well with having my mental illness blamed when every fiber of my being knows it’s not the whole story. I too get terrible migraines. Please answer a question for me if you don’t mind.....did your migraines get worse, better or stay the same after starting psych meds. Mine got MUCH more frequent and intense. Bipolar and migraine has been linked in some studies I’ve come across.......I’m not saying for anyone to “quit meds” but could this link be the result of meds causing the migraines? I had migraines before but typically 1 bad one a year and a mild one per month (around cycle) but it’s much worse as years progress.

I sincerely hope you get answers with this new doctor. Please keep us updated. Maybe your mental illness is more physical in nature than mental. (((Hugs)))

Any updates??