That’s how long it feels! Not that I don’t think about you. I do. But I thoughtfully avoid you. On purpose. So. To catch up.
Yep – went and saw Dr. Neuro B lo so long ago. Husband went with. Dr. Neuro B wasn’t thrilled that I had quit the Topomax even though HE had told me it was OK TO DO IT (hello???). He put me on Zonegran. Said come back in six weeks. This was after we discussed “alternative” therapies. And I was pretty clear that I thought cutting open my brain is pretty much over kill at this point. The three of us agreed. Dr. Neuro A insisted that I do a sleep study because he thinks that lack of good sleep in contributing to the ongoing lack of total seizure control. I agreed to do that. WooHoo! Another drug!! Lucky girl, I am.
Sleep study! WooHoo! Glue a bunch of stuff to my head! I have long hair! Make me sleep in clothes! Now my goodness THAT was weird. Make me sleep on a bed with a plastic cover. Oh yeah this is a realistic study of how I sleep. Oh yeah. Results came back that I do not have apnea but that I have hypopnea. Apparently I don’t take deep breaths when I sleep and my oxygen level drops low. So I go back for another study. He wants me to start using a CPAP machine. Oh, this I can’t wait for. I sleep with my face smashed into a pillow. THIS IS GOING TO BE FUN BOYS AND GIRLS!!
I went back two weeks ago for the Zonegran follow up. Not much has changed. He doubled the dosage to 200mg a day. But this time he pretty much pissed me off. I felt like he put me in a box. I had my left ankle wrapped, I was using my cane, and I had a bunch of sores on my foot below the bandage. As he was walking out of the room he said something like “if you took better care of yourself you wouldn’t have that sort of ankle weakness and those lesions are a symptom that your diabetes is out of control”. Hey doc, why not just put me in a fucking big Box of Assumptions??? I told him, no, that actually my ankle is wrapped because I torn a ligament and that the sores on my foot are not lesions, that they are mosquito bites I got out in the woods with my husband using his telescope looking at a comet. He had nothing to say to that.
I think maybe he’s getting to the point where he isn’t happy with me as a patient. You know how some doctors get unhappy because they feel like a failure because nothing they’re doing is working? I wonder if that’s where this guy is. I’m thinking about looking into the epilepsy center over at Baylor. I’m supposed to go back to see Dr. Neuro B in another five weeks and I’ll take his temperature then.
It’s almost Thanksgiving. I’m going in two days to get my CPAP machine. It would be great if it helps. They say bad sleep makes depression worse, and makes seizures worse, and makes memory worse. Would not it be too cool if this would make all that better?
The Ritalin is pretty cool. I forget to take it most days but I try to remember to take it at least in the mornings. It helps with my energy obviously (hey – speed helps me have more energy – isn’t that amazing?) and I think it actually has helped with my depression. The sex? Hmm. Maybe a little bit.
The Husband and I are working together to make the whole “Dump on one another equally” thing work. We had a huge blow up fight a few weeks ago. We never fight. Turns out maybe we should. We said stuff that apparently we should have been saying for a long time. It comes down to I don’t want to dump my stuff on him because he has so much crap already and he doesn’t want to dump on me because I have so much crap already. He’s afraid that if he dumps on me that I’m fall apart because I’m so “fragile” and I’m afraid that if I dump on him that he’ll just be pissed off at me at that makes me so scared. So we’re working on it. We had our 6th wedding anniversary a couple of weeks ago and it was awesome.
I had this thing with my back start about a year ago – this sharp horrible pain about 2/3 of the way down on the right. One specific place, doesn’t move, doesn’t hurt except when it hurts. I can be sitting here and it doesn’t hurt at all but then I can move or twist a tiny bit and damned it’s horrible stabbing horrible. When I went to Dr. PCP about it a year ago he gave me Soma and Vicodin and it helped ease it for a while. It’s never gone away but it’s never been that bad again. It’s come back and it’s bad again but not THAT bad. He wants me to do physical therapy and I’m going to go do my evaluation for that next week. Hope that can help some. I’ve been popping a Soma and night and a Vicodin in the morning. The Soma leaves me groggy in the morning. The Vicodin works great during the day but neither are the answer. I got the name and number of a theraputic masseuse from a friend and if the physical therapy doesn’t do the trick I’m just going to go with the massage. Can’t hurt, right? RIGHT?
I’ll try to be a better blogger. I promise.
Filed under: Counselor A, Dr. Neuro B, Dr. PCP, Fear, Husband, Mental Health, RX, Seizure
Sex? What sex? The drugs they give me for depression destroy my libido. The drugs they give me for seizures mean I can’t take the only drug for depression that is less likely to destroy my libido. The seizures are directly linked to the depression. So it’s all circular.
Then, there is Ritalin. Hmm. Or rather, Hmmmmmmmmmmmmmmmmmmmmm. That’s what my doctor wrote when I sent him an email about considering me using this drug. There is some evidence that it boosts the effectiveness of anti-depressants. There is some evidence that it can kick start a person’s libido that has been made dormant by other drugs. And of course there is a lot of evidence that it can improve energy levels and executive functioning. So I sent this email to my PCP:
Quick question. Is it worth our time for me to make an appointment to come in to talk with you about the possibility of Ritalin to address the total lack of libido in our home (Well, on the left side of the bed, anyway. The right side of the bed is doing just fine, if you don’t count frustration intense enough to cause a man to chew paint.) thanks to these pretty little “take these so you won’t kill yourself” pills, or would you just tell me to shut up because you’re laughing to hard you’re going to pee your pants and you don’t have a spare pair at the office?
To which he replied:
hmmm. I’ve never seen anyone use Ritalin for countering the decreased libido issue. I’ve only heard of changing doses and adding Wellbutrin (which will worsen seizures, which would be a bad thing for you). I wouldn’t want to cut down the dose because of what we’ve been talking about. hmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm. I dunno. If you want to start Ritalin, you have to come in because it is a SUPER controlled prescription requiring a SPECIAL prescription paper to fill it.
The hmmmmmmmmmmmmmmmmmmmmmmmm cracked me up because I could just hear him doing it. He does it all the time when I’m in his office and he’s thinking. The thing is, when I sent him this email I included an article by a physician who is a Professor of Psychiatry, University of Pittsburgh Medical Center and Chief, Division of Adult Academic Psychiatry, Western Psychiatric Institute and Clinic, Pittsburgh, Pennsylvania called “Sex and Antidepressants” where he discusses many possible “remedies” to address the problem and one of them is Ritalin. I did some research on all the drugs he mentioned and this was the one that best fits my problem and would give me the fewest side effects. The point of this whole thing is that I know there are many doctors who would react negatively to a patient doing something like this but my Dr. PCP is open to all sorts of things and, as you can tell from his email, doesn’t out of hand dismiss something just because he hasn’t encountered it before.
In the mean time, I’m due to see Dr. Neuro B in two weeks. At 600mg Lamictal I have returned to a manageable but still every day seizure pattern. I’m both looking forward to this appointment and dreading it. Looking forward because I’m sick of standing still, which is what I feel like I’ve been doing for about a year, and dreading it because my lack of success with Topomax will be my official 4th “failed” drug. Last time I saw him he said “alternatives” are our only next option with a 4th failed drug if I am still having seizure activity. So I’m both happy and nervous about all of that. It’s a good thing and a terrifying thing, too. Fingers crossed for an update in two weeks. All fingers. And toes, too.
At the same time, Counselor A says she thinks I don’t cry enough. I was in her office and she started talking about how she doesn’t think I talk to the people who love me about all the stress and pain I still have from this accident, and how hard it still is for me and always will be. I saw her the day after the 3rd anniversary of the accident and we talked about that. It made me cry so hard. I told her I didn’t want to do that – to sit in her office and cry about the anniversary and all the things it brings up in my head. She asked why I hadn’t talked with my husband about the anniversary and all the feelings it brought out. I told her that it’s just another day for everyone else, that it’s only an important day for me. She doesn’t think that’s true. I don’t go on and on about all this stuff with my family because geez you know they’ve got to be tired of listening to it.
It’s been three years – it shouldn’t be this big gorilla in my life anymore. Other people get hurt and they get on with it. So she thinks I should cry more – by that she means I should talk with my husband and friends about all this and she knows that if I did that I would blubber like a whale, but she thinks that would be a good thing. I have just never been a person to dump on other people. I explained to her that when I was hurt and physically unable to do for myself I had no problem asking for help. If your leg is broken you can’t get up and reach the top shelf of a cabinet or scrub your own feet. But just because I’m sad doesn’t me I’m going to dump on people. Everybody goes through hard stuff and I’ve gone through a lot of it in my life. A few months ago I was in Dr. PCP’s office and he started talking about something close to this and I waved him off. I told him that if he kept talking about it I would cry and I didn’t want to do that. He said he thought maybe I should. So two of the people who know more about what is in my head that anyone else in the world think I should just dump on my husband and my friends and sit around crying my heart out and feeling sorry for myself. I’m just not like that.
Filed under: Counselor A, Dr. Neuro B, Dr. PCP, Mental Health, RX, Seizure
Since July. I look at that little icon over there and think, man, I need to update this. But I keep putting it off. First I think – I don’t know how to put it all down. Then I think, eh I’ll be lazy today.
So I caved – I went back on the Lexapro. And I caved – I went back to Counselor A. The Lexapro is helping which somehow pisses me off a little bit. I’ve still got those razor blades and I still look at them but I am able to have this cognitive discussion that says “Hey, dummy”.
I had a couple of emails back and forth with Dr. PCP about a couple of things. He sent me the newest Lamictal levels and the report had the HIV report on it. Wrote back to him and said I didn’t know what the report meant but that I was guessing it meant negative? He said “Oh – yeah. It’s negative.” I told him that maybe that was the most important thing and he should have addressed it first. I love the man but HEY!
I’ve just avoiding writing what is going to happen in October.
I saw Dr. Neuro B at the first of July. The seizures had gotten a lot worse at 900mg and the tremor in my hands was bad. Dr. Neuro B said the tremor was from the high dose of Lamictal. He said to drop the Lamictal back down to 600mg, which is where I was when I had the best control. So I went straight down – no titration. And he added Topamax. So I ramped up on that. After about three weeks on that I was falling asleep at my desk in the afternoon and Diet Coke tasted like ass. I could have lived with both of those if it had gotten rid of the seizures but if really had no effect whatsoever. So I talked to Dr. Neuro B and he said to step down. I have one more week and then I’m off of it. The good news is that the tremor is gone and I had my first Diet Coke in weeks today; MAN it tasted yummy.
The bad news is that in July he flat out told me that if I was still having seizures in October that it was clear that medication wasn’t going to do it and that we would have to talk about alternatives. We all know what that means. 72 hour EEG. VNS? Brain mapping? More horrible? What? Me? Stress????
When we were talking he asked me, “Are you thinking about suicide?” I told him that of course I was. He asked, do I have a plan? I said “We’ve talked about this before. I’ve always had a plan.” He nodded his head in agreement. I told him that I wasn’t thinking about doing it, but it was always in my mind.
I told him that what was scary was that I had never thought before about hurting myself. That is when he asked, “Are you hurting yourself?” I nodded yes. The first thing he asked was “Does it cause bruising?” I shook my head no in shame. I don’t remember the second thing he asked but the third was “Are you cutting”? The shame this time was much deeper. I told him, “It hurts when I do it, but the blood is very satisfying.” He is the only person who knows. He asked where I do it. I told him it was somewhere that no one can see. He asked if I had told my counselor. I said no. He asked if I’ve told my husband. I said hell no, are you crazy? I told him it helped me focus the pain.
This was the first time I cut myself. The blood was in fact very satisfying. When I cut I waited for the blood. I did’t cut very deeply, and sometimes is took a few moments for the blood to start oozing. I pulled the skin on each side of the cut away and the blood flowed more quickly. I dabbed at it with a paper towel.
With every cut I used a different part of the paper towel, carefully marking it with blood so it was almost covered entirely with my redness. He asked what I used. He said, “A razor blade? Scissors? A knife?” I laughed in a morbid, quiet way. I told him the only really sharp knife I have is “this” long, stretching my hands apart to demonstrate a length of about ten inches. I told him it would have be very hard to control. He smiled at me. He looked at me as said, “It helps you focus”. I nodded my head yes.
When I knew I was going to cut myself I had wandered around the house trying to decide what to use. I first thought about a razor blade but I use a safety razor to shave and didn’t think it would work to tear it apart. I did consider a knife but mine are too big. I thought about an Xacto knife but didn’t think I had any new, sharp blades for mine. I was standing in the kitchen, trying to think, when I saw a utility knife on the kitchen table. I took a butter knife and used it as a screw driver to open the utility knife. There were three spare blades inside. I removed one and screwed the utility knife back in place. I knew the blade was thicker than a regular razor blade, and that it wouldn’t be as sharp, but it would do. I didn’t clean it. I didn’t care if I got infected.
He leaned back onto the counter behind him. He pulled one leg up and put his shoe up on his rolling stool next to his thigh. His right hand moved to his mouth and he looked off into space, thinking. Again I told him that I was scared because I’d never thought this way, much less done it. I made no move to show him the lines of clotted blood, the red rimmed wounds.
He rolled back over to the exam table where he had laid down my chart. I rarely if ever sit up there. I sit on the visitor’s chair. He rolled close to me and took my hand in his, grasping it tightly in both of his. His skin was warm and smooth. He has held my hand before. I told him that I was afraid. I told him that when I increased the anti-seizure medicine at the instruction of my epileptologist that my seizures had increased dramatically. I told him that it is almost as bad as it was before we started all of this so long ago. I told him that my epileptologist wanted me to have a blood test to check my Lamictal level. He nodded his head. He had been watching me and listening to my repeated hard burping since he had come into the room.
He told me he would continue praying for me. I told him thank you, that it meant a lot to me. When the tears started to roll down my face he reached behind him for a tissue. I remember that they were tan instead of white. I wondered if they were ordered that way on purpose or if it had been a mistake. When I couldn’t stop crying he brought the box to me and put it on the exam table next to my chart. He started writing. He told me that cutting is tied to self esteem.
He pulled out his prescription pad and told me he was going to increase the Effexor. He told me I have to talk with my counselor about what I was doing. I told him I would think about trying.
When he stood up to leave the room he stopped, turned around, and leaned over me. His hand went behind me and he bent at the waist. He hugged me tightly but didn’t use any platitudes, didn’t say “It will be alright” or “Be strong” or “You’ll feel better soon”. He just hugged me tightly. I hugged him back. As he walked toward the door he told me he would send a nurse in to take my blood. He closed the door behind him. I took another tissue and tried to look like I hadn’t been crying, because of the shame. The nurse came in and did her work. I asked her if I could see the doctor again for a moment. As she left the room she said she would ask him.
When he came back I was standing against the wall near the door. I told him I hadn’t wanted to freak him out, that I’m not gouging myself. He said he wans’t freaked out, that he had had people come in with ten staples in their arm after they had hurt themselves. I told him I wasn’t digging for my femoral artery. He smiled and said yeah, that would be bad. So much blood would be hard to clean up. He smiled and said it would make a big mess. He told me to come back to see him in about a month, or sooner if I needed to. I told him thank you.
As I walked down the hallway to check out at the front desk I started to think that I might change my plan. I started to wonder if I could dig deep enough to reach my femoral artery.
I am scared.
As of today, she can go to 800mg.
At 700mg, things were not good. At 600mg the seizures had dropped so much that some days I actually forgot I have them. When I saw Dr. Neuro A he was pleased by this but since I am still having them he said to continue to up the dosage. He said that since so much progress had occurred that we didn’t need to talk about hospitalizing me. This made me VERY happy. I joked with him that it might not be the drug but rather since the last time I saw him when he talked about hospitals and surgery that maybe he had just scared the crap out of me and that made the seizures better. He laughed and said he doubted that because he had just come from a guy in another exam room whom he TRIED to scare the crap out of because the guy won’t quit drinking and won’t accept that his seizures keep getting worse because of that. He said he doesn’t think he’s so good at scaring the crap out of people.
So he raised me to 700mg and it almost immediately started getting worse. Now, four weeks in, it’s getting pretty bad again. The strength and the frequency have increased a lot. He said that if the seizures hadn’t gone away in a month to up it to 800mg. So I did that starting today. I can’t tell you how badly I need 800mg to work. If it doesn’t, I know that when I see him in two months that he will want to put me in the hospital. It isn’t that I’m afraid of a 48 hour EEG. It’s that I’m afraid that when it’s done he’ll say “Hey lets talk about cutting your brain open!” or maybe even worse, honestly, he’ll say “Hey I don’t know what the hell to do at this point and I think you’re just never going to get better, and probably will continue to get worse. Have a nice day!”
I’ve started back at work part time and in about six weeks I’ll start full time. I swear. If all this had to happen I wish it could have happened during the six months I wasn’t working. That’s all I need. To have to go into the hospital and maybe have brain surgery right after I start a new job. “Hi. I’m so happy to be working here! Now I’m going to take a couple of months off to let some guy diddle around in my temporal lobe. See ya! But save my desk, OK?”
Here’s to 800mg. All my fingers and toes are crossed.
A couple of weeks into Cymbalta and the only thing I can say is that my garage is happy. I finally cleaned it out after about six months of accumulating crap in it. My husband is very happy. Somehow, it pleases me very much to sweep the garage clean. As for the anti-depression part, that hasn’t kicked in yet. But I don’t expect it to for a number of weeks of course. I’ve been the way I am for a long time so obviously I’m not in a big hurry.
There is good news on the seizure front. I think 600mg Lamictal is close to where I need to be. The burping has been significantly reduced. I am in the 10-15% range just about every day now, and haven’t had a long spell in a good while. Some days it is so good that when I do have a few burps it surprises me. On those days I am actually able to forget that I have this problem. I am looking forward to increasing to 700mg and hope that it will do the trick. Fingers crossed. I really don’t want to have a video EEG, and I don’t even want to talk about surgery.
Overall life doesn’t suck completely these days. My old boss is, in her words, “scheming” to get me on at least part time with her at her new school. Her plan is to get me on part-time and then let them see how “awesome” I am. Once they see how they can’t live without me they’ll find room in the budget to have me full time. She wants me as badly as I want her and that can’t help but make me feel great. It’s been hard to not be working. The laziness I love, but the total lack of structure I know isn’t good for my psychologically. And you know, MONEY would be nice. I’m not too far away from having to really start worrying about that.
So I have that to look forward to and also I have a camping trip to be excited about! We haven’t been camping for four years. The last trip we took, I was so sick we had to get up and leave in the middle of the night. I had developed diabetes and it was raging out of control, but I didn’t know it. The next camping season we couldn’t get away, and then the next after that is when I was in a wheelchair from the accident. Since then there have been two more surgeries. The problem is I can get on the ground, but it is very painful to get up. I can’t kneel at all and any weight on my knees is very painful. So I developed a strategy. We bough one of those “4 minute mattresses” that blows up to about two feet tall. It is not only obscenely comfortable, but it is tall enough that I can stand up from it, which means I can go camping with it! We bought a nice big new tent so there is plenty of room for it, and we are going for a week at the end of the month. I am insanely excited. I love being in the woods and it has been way too long. Camping is something that being sick and injured has taken away from me. I am very happy to be reclaiming it.
I have a job interview tomorrow for a job I really don’t want but I’m going anyway. It isn’t so much that I don’t want the job, it’s that the office is near downtown and I don’t want a 30-45 minuted commute each way. But I have to go. I had gone on an interview a few weeks ago for another organization and, though they hired someone else, they were so impressed by me the wanted to pass along my resume, and they did. Which is how I ended up with this interview. So I feel obligated to go. I love the organization I just don’t want the commute. And of course if my old boss can get me on with her, there is no question of where I will work.
So fingers crossed that the Lamictal will continue to work and get better, fingers crossed that the Cymbalta will turn out to be a good choice. Fingers crossed that it doesn’t rain on the camping trip! Although I’m sure it will. It ALWAYS rains when we go camping.
Filed under: Counselor A, Dr. Neuro B, Dr. PCP, Mental Health, RX, Seizure
I have this seven day pill box. I opened it this morning to take my multiple drugs and when I looked at the pile of pharmaceuticals in my hand it reminded me of all the pills a friend on mine who has AIDS has to take every day. There were seven pills in my hand! And that didn’t count the two that I take out and put back in the box to take at night!! I am only 43!!! I hate this.
The Lamictal is up to 600mg a day. It’s really helping. The frequency of seizures has dropped to about 15% a day, and the strength of the burping has diminished greatly. But it’s not enough to make Dr. Neuro B happy.
Counselor A and I are meeting every week. I think we have a good relationship. I feel very comfortable with her. We talked this week about what Dr. Neuro B had said about Wellbutrin and we talked about Cymbalta. I told her I had read anecdotal reports that were either really good or really, really bad. I told her I hadn’t decided, and that when I see Dr. PCP in April I will discuss it with him. When I was driving home from her office I was thinking about the whole thing and said well fuck this. I called and set an appointment to see Dr. PCP that afternoon. I told him about the Wellbutrin discussion and he said the same thing – no way. I told him Dr. Neuro B said he has good success with Cymbalta and we talked about it a little bit. He gave me a bunch of samples and told me to come back in a month. He said the big problem with Cymbalta is nausea. I said I could handle that. He said, no – nausea that is like puking your guts out. I asked if had anything that would just cause a low grade nausea all day because I’m sure I could loose 20 pounds on that. It’s great to have a doctor you can make jokes with.
When he gave me the sample boxes I asked him to write the instructions because I have so much trouble remembering things. He was trying to write on the box and griping, “Why do they put this wax on these boxes??”. I dug out a pocket sized black Sharpie from my purse to give to him. He said he had one. I said the little one? That you can carry in your pocket? He said yeah and pointed in the general direction of his office, saying “But it has Flonase printed on it.” I looked at the pile of samples on the table between us and said, “Drug Whore”. We both cracked up. This man has saved my life more than once.
I started this new drug on Wednesday. A little dizziness, a little sleepy. No nausea but a slight decrease in appetite. Nothing bad about that! From the anectodal reports I’ve read, about half the folks complain about decreased sexual drive and about half brag of increased sexual drive. I’m keeping my fingers crossed for the later.
The big deal here is that I’ve admitted that yes, Dr. PCP is right (isn’t he always) and that yes Counselor A is right. I am depressed. I’m not crazy, suicidal, drive under an 18 wheeler depressed, but I’m not right, either. I’m avoiding my friends. I not leaving the house for days at a time. I am showering but I’m not getting dressed. I’m not taking phone calls. I’m having trouble reading, not interested in movies, just lots of blah. So I’ve admitted it. Hi. My name is In Case I Forget and I’m depressed. (Hi, In Case I Forget!). Just admitting it is depressing. I swear I know it’s irrational but it seems like such a cop out – so whiny. When I was with Dr. PCP and he asked me why I fight admitting this so much I smiled at him and said “Because I’m tough”. He laughed. And wrote me prescriptions. He’s a good guy. I’m very grateful to have him in my life.
On the Counselor A front: She is saying thing like “PTSD”, Grief, Wheelchair. I am starting to look for a job but I’m very afraid because even if I can hide the burping through the hiring process, what happens when I have a 90% day? At my prior job is wasn’t such a big deal because they knew me and went through the process with me, the watched me through the gastro studies, through the brain scans. They saw me the day I was told I am having seizures. They watched me loose bits of myself on Keppra and Trileptal. But a new job? The first day I can’t control the burping what do I say? Oh don’t worry I’m just having hundreds of epileptic seizures. No problem. Yeah that will go over great. I have some leads at good non-profits but I’m just dreading the whole process. Maybe I should have paid more attention to my mother’s advice. Marry a rich man.
On the Dr. Neuro B front: I saw him last week. The Husband couldn’t go with me and that was pretty stressful. I had a list of questions written down and I went through it with him. We talked about the burping – it has reduced in intensity but only a little in frequency. He continued with his previous plan of increasing the dosage but he ramped it up. From 400mg to 500mg. For only three weeks instead of three months. Then up to 600mg. Come back in three months. Then if no resolution keep pushing it some more. Before he had said that 1000mg is about the upper limit. He asked if I’ve had any side effects and I said no. He asked again (apparently he was surprised by that or just REALLY double checking) and again I said no so up we go on the dosage.
I told him that both my Dr. PCP and my Counselor A both think I am experiencing this thing which I can annoyingly not pronounce, Dysthymia. They’ve both suggested an anti-depression med. Wellbutrin. So I asked Dr. Neuro A and both he and the resident in the room just cracked up. Seriously. No, No, No they said. They asked me if I knew why? I said….side effects? In unison they said No. Seizures! Apparently Wellutrin can cause people with epilepsy to have more seizures and worse seizures. He suggested Cymbalta. He said it is the SSNI that works best with people who have epilepsy. Then he said that depression is very common with epilepsy – approximately 30%.
Then the scary part happened. He went back to talking about the dosage escalation. He said that since I had failed (why do they call it that – makes it sound like I did something wrong) on a few different anti-seizures drugs that he would push the dosage up for a while longer and if it isn’t getting me to 100% no seizures I will have to “be hospitalized”. I said, whatever for? He said for a video EEG. I’ve heard of that so it’s not so scary. He said depending upon what he can learn from that he will begin talking about surgery. I made it clear that I have a negative opinion about brain surgery. He said another possibility is a Vagus Nerve Stimulator. This doesn’t scare me as much as brain surgery but it still doesn’t thrill me. I’ve read a bit about them and understand that they can have permanent impact on various nerves that run down through your neck, and some other not pleasant problems. I think I might prefer to just take more and more and more drugs than have anybody cut me open for any reason. But I know that’s not realistic. I remind myself that my Dad had brain surgery (to remove cancer) and that it was truly no big deal. He had some short term memory impact but hell, I already have that. Still, it’s my brain.
I asked him where the anomoly he saw on the epilepsy protocol mri is. He pointed to a place on his head a little bit behind his left ear and about 10:30 looking from behind. I asked how deep and he said “pretty deep” but he also held his fingers together and said it’s really really small, about 1/4 inch big. So trying not to freak out. Deep brain surgery. C’mon Lamictal. Work for me.
I have this horrible urge to be a non-compliant patient. It is totally foreign to me. If I go to a doctor it is because there is something wrong. I’ve been pretty lucky (Except for Dr. Neuro A) with doctors. I’ve heard horror stories. But my Dr. PCP is awesome, and I have real faith in my Dr. Neuro B. Hell I think I’ve even found a counselor who isn’t rude, obtuse, ineffective, or just plain abusive. (Crossing my fingers on that.)
But. A couple of weeks ago The Husband accompanied me to my first follow-up with Dr. Neuro B. The burping is bad. I had some real improvement back when I was at about 175mg a day but I was still in the 10-15% range. As I increased to the original target dosage of 300mg, it slowly got worse. At the follow-up, Dr. Neuro B told me to up it to 400mg and come back in 6 weeks. I asked him – how long will we do this? He said, “Until you are symptom free or until it makes you sick.” Now, these days, I’d be happy at 10-15%. Honestly. I’m back to 85-90% a day, which in my mind says the Lamictal isn’t working at all. This is where I was before when the Lamictal quit working. This is where I started out at, almost a year ago now. This IS NOT WORKING.
And Dr. Neuro B says 10-15% isn’t good enough. He says that until I am 100% seizure free that I am not in good shape. He said “You’ve never had a complex seizure until you’ve had one.” I know that is true, but I also know this drug IS NOT WORKING.
So I am tempted. I want to drop back down to 175mg. It is the level where I got the best results before, and it is the level where I got the best results this time. But I’m a very compliant patient. I work on the theory that if I’m not going to do what a doctor tells me to do, why the hell should I bother to go? So I’ll wait until the first week of January. I’ll keep swallowing these pills. But I have no hope. And that’s a pretty sad way to be. I don’t think anything will ever work. I think these seizures will continue, I think I will continue to have trouble getting a breath. I think I will either one day not be able to get air in at all and smother to death, or that the seizures will get worse and I won’t be able to drive or function. I could see myself becoming one of those statistics – one of those Epileptics who can’t take it anymore and decides to make sure it quits happening.
I’m not trying to be over dramatic. I’m not threatening anything. But I can sympathize with the folks who have taken that route. And I can see how there might be a point in my future when I come to be that desperate. I really don’t think there’s anything else that will work.
The burping is worse. For over a week now. I’m in the 50% range. The confusion is coming back. The frustration. The fear – big time. I’m starting to have trouble reading again. I have no motivation to do anything. I’m just not doing very well.
I go see my PCP again tomorrow. I want to tell him all of this, but I won’t. It’s not his responsibility and lord knows he’s already dealt with enough of my crisis state already. I’ll let him stick me for blood work for TSH and Ha1c. I won’t tell him my back still hurts pretty damned badly. I won’t tell him about the pain in my foot. I won’t tell him the cloud of doom is back, following me around like a three legged puppy. When he asks how I’m doing I’ll tell him the truth – that I’ve been a hell of a lot worse. I know this sounds stupid but…I feel like when I see him all I do is complain and feel sorry for myself. I’m not telling my husband about all of this either. He obviously knows the burping is getting worse but the other stuff I can hide from him. He’s got enough pressure with his promotion and me not working. I just feel lost.
I don’t think the Lamictal is working. I think it’s stopping again. Not like it did last time, just overnight, but slowly. I’m not looking for a job. With the burping this bad I don’t know if I could get through an interview, much less be at work eight hours a day and not be humiliated. I’m just not doing well at all these days.
In case I forget. 