In case I forget.


Forever and ever, amen.
November 19, 2007, 10:16 pm
Filed under: Dr. Neuro B, Husband, Memory, Mental Health, RX, Seizure

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.

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Sex, Depression, and Seizures
September 16, 2007, 10:21 pm
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.



It’s a wonder I don’t drink.
August 20, 2007, 12:02 am
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????



Stop it. Just stop it. And oh yeah, don’t call me, OK?
June 29, 2007, 11:39 pm
Filed under: Counselor A, Dr. Neuro B, Dr. PCP, Dr. Psych, Fear, Husband, Mental Health, RX

I remember when I last saw Counselor A. I told her that I just wanted to stop. That I was only willing to do what is absolutely necessary to get by and nothing else. So I go to work. I take a bath. I eat. I try to sleep, often with little success.

Sometime on Wednesday I realized that I’m doing things that I don’t absolutely have to do.

I don’t have to see a psychiatrist. I went to see Dr. Psych  yesterday and I told her that. I told her that I can’t afford to see her since she is out of network and that the only thing she can do is give me pills anyway.

One of the other things I realized is that I don’t have to take all these damned pills. I told her I am quitting the Lexapro. I told her I wanted to know how to get off the Effexor. She didn’t think any of this is a good idea but you know what? She doesn’t live in my head and she doesn’t know what it does to me every time I dump a handful of pills into my palm every  morning and night to swallow. She asked if she could talk with Dr. PCP about this and I told her it was fine, and that I would be seeing him that afternoon anyway. She asked if I would talk with him and tell him and I told her yes, of course, I don’t keep things like this from him. She gave me the names of two psychiatrists she knows who are on my insurance and said that if I can’t see her that I should see one of them. I don’t absolutely have to, and I don’t see the point anyway.

I don’t absolutely have to see a counselor. I’ve talked with Counselor A since November and it sure as hell hasn’t helped. I’m in much worse shape now than I was then. Understand, that isn’t her fault. She was so kind and I felt so safe sitting in that room with her. Our time together was good. But I was going down instead of up.

I don’t want to go down any farther.

I did see Dr. PCP yesterday afternoon. I told him I want to get off all these pills. He didn’t comment but he did tell me how to do it. I don’t know what his thoughts are, which is strange, because usually he tells me. I showed him how my hands have started to tremble over the last month or so. He stuck his finger in the air and had me move mine from my nose to the tip of his finger. He kept moving his finger farther back. He said the tremor got worse the farther back he moved his finger. I told him I’m seeing Dr. Neuro B on Monday and he said I should talk with him about it.

I had actually set the appointment with Dr. PCP because I needed to have blood drawn for Lamictal levels to take with me on Monday. I told him that I know he can’t code me for just a blood draw and asked him to look at some sores in my mouth. They’re small and white, and when I scrape the top off them there is a depression inside. (Depression. Ha. HA!)  Dr. PCP said the thinks it might be thrush. THRUSH???

He wrote me a prescription for Nystatin. I said, “It’s not a pill, right?” He said no, it’s not a pill. He said take a teaspoon or so, swish it in my mouth and then spit it out.  I said, “Swish and spit?” He said yes – that he was even going to write that on the RX. And he did. Made me chuckle when I got the bottle. I did it for the first time this afternoon. It didn’t taste so bad. Until about ten minutes later. A horrible, revolting, sour, metallic after taste. Hours later it is still there. A couple of times I thought it would make me throw up. I have to go do it again soon. I hope I can do this for five days and that it works.

I said to him, THRUSH??? He said that’s what it looks like. And then. THEN. T H E N he said he wanted to take a tube of blood to run an HIV test. I asked him why? It’s like my brain stopped. When he said thrush I immediately thought of a friend who has HIV and who also has had problems with thrush for a long time. I thought thrush=HIV. Of course, that’s not necessarily true. BUT. Dr. PCP said HIV test. I agreed and went about my day. Now, a day later, I’m stunned. I’ve been in a monogamous relationship for fifteen years. I reminded Dr. PCP of that when he said HIV test. He said to do it anyway.

So I’m stunned. I’m thinking of what it’s going to be like to be off all the psychiatric meds, and tonight I am sitting in bed terrified that on Monday he won’t just email me my lab results. If he calls me instead, I am pretty sure I won’t stay here. I’ve seen so many people slowly waste away with HIV. Back in the 1980’s my friends were dying left and right. A couple of them who were infected back then are still alive and their lives, how the disease has changed them and warped them, it’s horrific. When I said in a previous post that I know people with HIV who take fewer pills every day than I do, I was serious. But HIV is something I can’t face.

My first thought is that if Dr. PCP calls instead of emailing that I will loose my husband and job and home and car because I will have to be put in a rubber room. Or, I will go on and execute (Ha. HA!) that “How bad is it today?” plan because that will be the day I will have to say “Yeah, it’s that fucking bad.” Sitting across that exam table from Dr. PCP an pretending that I can even in my wildest dreams think of any way to deal with that talk, the “This is why I asked you to come in” talk, is so outside the realm of possibilities that I think it would be easier to fly across the sky. So I hope he emails me. If he calls me on Monday I don’t think I’ll answer the phone.



And the beat goes on
June 24, 2007, 4:21 am
Filed under: Dr. Neuro B, Dr. Psych, Fear, Mental Health, RX

Ladi dadi di. Ladi dadi dum.

Dr. Psych codes me for “Major Depression” and “PTSD”. Words words words.

Drugs drugs drugs. I tell her I can’t take the Risperdol. She offers me another a-typical. I tell her I don’t want it. She is concerned about my sleep problems. She offers my Ambien. I tell her I’ve read the studies. Those sleeping pills are big marketing bullshit. I tell her a swig of NyQuil works better than the bigPharm drugs for a good night’s sleep.

She says that the Effexor doesn’t seem to be doing what I need. She says we need to try something else. I agree. How about giving up and just going down as far as it takes? I don’t tell her this of course. Those sorts of things concern psychiatrists. She says she wants to switch me to Lexapro. You know, I actually have a friend who went through a very black depression that was dramatically improved with Lexapro. I don’t even care. I don’t think any drugs will work. I think there are TOO DAMNED many drugs already. I took my pill box with me and dumped out one day’s worth of pills in my hand. “Look at this! I swallow all these every day!”

So the tapering off begins. Now I have to take 5mg of Lexapro a day in addition to all the other stuff. She said to come back in 10 days. She will probably increase the Lexapro and decrease the Effexor at that time.

My hands have started to tremble. I have sores in my mouth. I’m worried about the Lamictal. I go back in about a month to Dr. Neuro B and I’m afraid that these are both due to the Lamictal. I’m terribly worried that if I tell him that he will take me to a lower dose or stop it all together. I can’t deal with the seizures getting bad again, with being out of control again with the one thing that is getting better slowly but surely. I know that 900mg a day is a very high dose. I’m not willing to give it up.



Tattle Tale
June 3, 2007, 11:43 pm
Filed under: Counselor A, Dr. Neuro B, Dr. PCP, Fear, Mental Health, RX

Because I always try to do what Dr. PCP says, I talked with Counselor A about cutting. She was so freaking irritating. “Do things to distract yourself!” “Write about it!” “Exercise!” “Play a game!”. What a lot of twaddle.

I told her that I’m just tired. I’m tired of being the strong one. I’m so tired of being on edge, waiting for the next bad news. I thought it would all be over. I thought if I put everything I had into rehab and making my body work again that it would be over. But it will never be over. Ever. And I just don’t think I can face that. I didn’t do anything wrong. In fact, I did everything right. And I’m stuck with this for the rest of my life.

When I went up to 700mg on the Lamictal like Dr. Neuro B told me to the burping started getting a little worse. Then when I went up to 800mg about 10 days ago it got really bad.  I mean almost as bad as it was when we started this whole thing what was it – more than a year ago? Gasping for breath, long, strong series. Totally demoralizing. I called his office and spoke with his nurse. Told her what was happening. She said he wanted a Lamictal serum level. So I went to Dr. PCP and he took the blood. That’s when I told him about the cutting. He sent me the results this past Tuesday and told me they were “normal”. The range is 2.0 – 20.o and I’m at 10.0. Seems normal to me, too!

But when I got a call back from Dr. Neuro B’s nurse she told me that he wants my level to be much higher, and said that I should go up to 900mg. NINEHUNDRED?? Holy frankincense I feel totally beat up. So now I’m taking more drugs. You should see the pile of pills I dump into my palm every morning and night. I feel like a freak.

I told Counselor A that I just couldn’t keep it up. That I was going to shut down as much as I can. I’m only going to do the things I absolutely have to do. She asked me what that included. I told her, I have to go to work. I have to take a bath. I have to have clean clothes. I have to drink and eat. That’s it. She kept urging me to do the things that used to give me joy. Creative things. Artistic things. I kept telling her I have no interest – have had no interest since the accident – in any of those things I used to enjoy. None. She went to far as to suggest that if I feel so compelled to cut that I might want to consider taking a break and go into a hospital. She laughed when she said it because she knew what my reaction would be.

I’m just so tired. I’m empty. I don’t have anything else to give. There is too much pain, too much hurt, too much bad news. That’s where the cutting comes in. When I told Counselor A a couple of weeks ago that I was thinking about it she suggested that I use ice instead. She said if I held a piece of ice to my skin that it would start to burn and the pain would be similar to the pain of cutting. When I left her office on Wednesday she asked if I had tried the ice. I told her “Yeah. It numbed the skin so the razor didn’t hurt as much.” I’m pretty sure that’s not the answer she was looking for.

She doesn’t get that it’s not the pain I’m after. I don’t like the pain. Pain is a big problem for me. Pain in my knees. Pain in my pelvis. Pain in my brain from just being overwhelmed and exhausted. I explained to her that the blood is very satisfying. I’ve found that watching it, soaking it up with a paper towel, pressing the wound to clot it, is a mesmerizing process. I told her that every day it helps me focus. It helps me put my mind in one place, instead of having it fly around to all the problems and pain. Every time I take a step I can feel the scabs rubbing against my thigh. Every time I cross my legs I can feel the pressure on the wounds. I can think just about that an nothing else. The focus is tremendous.

This past Wednesday when I was with Counselor A I had looked at the clock and could see that we had gone over my time. I said, “We’re done.” She looked confused. I pointed to the clock and said we’re past time. She got up and we left. On Friday it struck me that what I had said was true. We’re done. She can’t help me. It’s not her fault. I left her a voice mail early this morning telling her that I’m not going to be seeing her anymore for a while, that I’m not making any progress, that I am grateful for her time and concern, but that I need a break. Apparently she isn’t on the list of things I absolutely must do.



It looks like I have AIDS.
February 16, 2007, 11:47 pm
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.