I am walking across the main floor of my house when, out of the edge of my vision, I see a flash of color in the dining-room window. There should not be color there. I turn to look, and see a shocking sight: an upside-down face, flushed with color, unconscious but alive. The face is stuck to the window glass, one cheek pressed flat. It belongs to a dark-haired woman. At the same time that I am figuring out what I am seeing, there is a slithery sucking squeak of sound and the face disappears. A moment of silence and almost-normality is followed by a bone-shaking thud. I realize that the woman's body has hit the ground in the air shaft, and that she is probably dead. And then I think, Who was she? There is only one dark-haired woman who lives here, and it is me.
My therapist asked me yesterday if Malarone could cause night terrors. I just checked, and one of the rare listed side effects is "vivid dreams". Malarone or Abilify? Or artemisinin? I am taking too many meds...it's impossible to figure out which one is the culprit.
I forgot to mention...this happened a few days ago, but time is no longer moving very linearly for me. Two days after I started taking the Malarone, I had what seemed like a Herx. In the evening, I suddenly got very sweaty with the shivers. It felt like I was running a high fever, but when I took my temp it was only 97.1, so who knows. It lasted about an hour and then went away.
a Baltimorean with Chronic Lyme Disease
Friday, December 31, 2010
Thursday, December 30, 2010
disAbilify
I took the 1 mg dose yesterday morning after taking Tuesday off. I started feeling itchy about an hour after I took it, and after that I was scratching all day. It just makes me feel wrong...flat and dull, and having trouble thinking and typing -- keep getting the letters confused when I touch type. I haven't done any knitting or crocheting since last weekend, although I have two projects ready to start. I don't feel sad, but I did a bunch more random crying. I didn't have nightmares last night (or any dreams that I can remember), but it feels like this is not a good drug for me.
I'm not sure what to do. I didn't take it today. Still feel very sedated -- in spite of sleeping for 9 1/2 hours last night, I had to lie down at 10:30. Fell asleep again and slept for 3 more hours. The all-over itching is gone, though.
I'm not sure what to do. I didn't take it today. Still feel very sedated -- in spite of sleeping for 9 1/2 hours last night, I had to lie down at 10:30. Fell asleep again and slept for 3 more hours. The all-over itching is gone, though.
another night terror
Night terrors again. This one happened on the night of 12/28-29. I dreamed that I saw a shadow through the frosted glass of the front door. When I opened it, a tall man was standing in the tiny vestibule. He was wearing an overcoat and a felt hat, and holding a large stack of old books. I asked him what he was doing there, and he said he had seen in my library list that I was researching similar subjects and had decided to bring the books to me. He seemed to want to come in, but I took the books and thanked him, and he left, leaving the front door open. Only after he was gone did I realize that he had managed to break into both my house and my library account. Then I started to wonder if the explanation about my library list was just an excuse, and sure enough, when I checked, the books' subjects had nothing to do with me. I kept seeing him in my mind's eye standing in the vestibule...was that a memory or multiple occurrences? It worried me a lot that he had managed to get past the locked front door.
Tuesday, December 28, 2010
Musical brain meds
The Lamictal/Zofran combo did not work. In fact, I ended up so stopped up that it took me a week (and 4 days in a row of using laxatives) to get back to some semblance of normality. In the meantime, I saw my shrink again on 12/21. She had two ideas for new mood swing meds for me -- a melatonin agonist called agomelatin and Abilify, an antipsychotic that seems to help some people with mood swings when they take it at low doses -- and also prescribed Klonopin for my sleep problems. Of the two mood swing options, we decided to try the Abilify first.
I decided to try the Klonopin and the Abilify on separate days, so that if I had any side effects I could tell what was causing them. I took 0.5 mg of Klonopin on 12/22, half an hour before I wanted to go to bed, as suggested. After 90 minutes, it had had no effect. By that time it was 1:00 AM, so I took my regular dose of Lunesta and was asleep by 1:30. I woke up at noon Thursday with a horrible hangover -- very sedated, dizzy, stumbling. I continued to feel drugged for the next three days. I didn't take any more Klonopin.
I ended up waiting until last night to try the Abilify -- wanted to be free of the side effects from the Lamictal/Zofran/Klonopin first, and then I wanted to avoid overlap with my first dose of Malarone on Sunday.
Things did not go well. I took 2 mg of Abilify along with my bedtime meds at 10 PM, as I have noticed that my sleeping pill is taking 2 hours to kick in. I was asleep by midnight, but had a horrific nightmare early in the night about someone beating someone else to death in front of me. I woke up terrified and couldn't get back to sleep for a long time. Unfortunately, I also was very itchy last night and had a hard time waking up this morning. I don't feel good...having a hard time thinking straight, dull brain. My plan is to give myself a day off, then try 1 mg on Wednesday to see if that works better.
(Note from next day: also had some coordination problems and exacerbation of depression -- weird, it was like an overlay on top of my own neutral mood, but I kept starting to cry for no reason)
I called my insurance company last week to see about coverage for agomelatine, and they hadn't heard of it. This morning I thought to look it up in the 2011 Medicare formulary, and it's not listed. So, it looks like agomelatine is not going to be an option for me.
One other thing I forgot to mention -- I'm back to taking Ambien CR instead of Lunesta. I tried it again on Sunday, and it worked. The onset is delayed 2 hours, as it was when I stopped using it, but after that it is working better than the Lunesta was.
This whole process is so bewildering.
I decided to try the Klonopin and the Abilify on separate days, so that if I had any side effects I could tell what was causing them. I took 0.5 mg of Klonopin on 12/22, half an hour before I wanted to go to bed, as suggested. After 90 minutes, it had had no effect. By that time it was 1:00 AM, so I took my regular dose of Lunesta and was asleep by 1:30. I woke up at noon Thursday with a horrible hangover -- very sedated, dizzy, stumbling. I continued to feel drugged for the next three days. I didn't take any more Klonopin.
I ended up waiting until last night to try the Abilify -- wanted to be free of the side effects from the Lamictal/Zofran/Klonopin first, and then I wanted to avoid overlap with my first dose of Malarone on Sunday.
Things did not go well. I took 2 mg of Abilify along with my bedtime meds at 10 PM, as I have noticed that my sleeping pill is taking 2 hours to kick in. I was asleep by midnight, but had a horrific nightmare early in the night about someone beating someone else to death in front of me. I woke up terrified and couldn't get back to sleep for a long time. Unfortunately, I also was very itchy last night and had a hard time waking up this morning. I don't feel good...having a hard time thinking straight, dull brain. My plan is to give myself a day off, then try 1 mg on Wednesday to see if that works better.
(Note from next day: also had some coordination problems and exacerbation of depression -- weird, it was like an overlay on top of my own neutral mood, but I kept starting to cry for no reason)
I called my insurance company last week to see about coverage for agomelatine, and they hadn't heard of it. This morning I thought to look it up in the 2011 Medicare formulary, and it's not listed. So, it looks like agomelatine is not going to be an option for me.
One other thing I forgot to mention -- I'm back to taking Ambien CR instead of Lunesta. I tried it again on Sunday, and it worked. The onset is delayed 2 hours, as it was when I stopped using it, but after that it is working better than the Lunesta was.
This whole process is so bewildering.
Belated Lyme update
Over the weekend, I logged into my blog to check a medication dose, and realized that I was nearly a month behind with my medication updates. I'm going to try to rectify that today, although I am feeling very slow and dull from a new med.
On 12/6 I had my third appointment with LLMD Dr. M. Here are my notes for my appointment, with her responses in italics.
Notes
On 12/6 I had my third appointment with LLMD Dr. M. Here are my notes for my appointment, with her responses in italics.
Notes
10/25 -- last visit with Dr. M; tried trazodone 1 hour before bed as directed. It did not work well for me. Onset very delayed -- didn't start to take effect until >4 hours after I took it. Finally gave up and took Lunesta at 2:30AM. Next day I felt sedated and hung over and had physical tremor in my hands. Did not take trazodone again.
10/26 -- went to see dermatologist Dr. A about rash on legs. She dxed it as Schaumberg's Disease (inflammation of the superficial capillaries that causes the capillaries to leak). The cause is unknown, but she said my presentation was pretty classic. She said it could have been caused by my infections, be autoimmune, or be a reaction to one of my antibiotics. She said she'd like to see me discontinue the abx to see if it made a difference, but understood if I could not do that. She didn't take a biopsy since the rash wasn't itchy or painful, just told me to come back if it got worse (spread farther up my legs, turned up on other parts of my body, or became symptomatic). It went away when I discontinued the azithromycin.
10/31: increased dose of minocycline as directed; stopped multivitamin; stopped Lyme herbs
11/9: I had another round of neurocognitive testing. The psychologist scored the test I had the most trouble with last time, and while my performance was still below average, it was quite a bit better than before. This was encouraging, although I have not noticed any improvement in my day-to-day cognitive function. He wanted to do some more tests; scheduled for 12/15.
11/13: third bout of mood swings -- worst one so far. Very rapid cycling -- switching several times an hour for several hours, ranging from hypomania to suicidal thoughts. At the same time, I had severe nausea, stomach pain, and diarrhea. (Note: my 4th bout of mood swings was on 12/10.)
11/15: second appt. with psychiatrist Dr. L, after a 3-week interval. My therapist went with me. As my therapist had suspected, the psychiatrist had no intention of prescribing anything for me, and hadn’t even really given it any thought. I fired her.
My parents did some research for me. My dad talked to his shrink, and my mom talked to a friend who is a shrink. Both doctors said that the bipolar-like symptoms were likely caused either by my illness or by the meds I’m taking. Both also said that taking antidepressants could make things worse if I was having rapid mood swing cycles. Apparently taking antidepressants in a depressive phase can worsen manic episodes. My dad’s doc said that mood swings can be made worse by hypothyroidism, too. My mom’s friend thought that hormones might be involved and was glad I was getting that checked out soon.
11/17: Saw therapist. I told her that I was very afraid of how bad the next mood swing might be. She suggested that we find a way to get me a small prescription of Xanax, so I would have something to help with the next mood swing in case I didn't have a new psychiatrist by then. She wrote a note to my PCP and he called one in on 11/19.
11/21: Discontinued azithromycin and tinidazole, started cipro (all as directed). Still taking fluconazole twice a week.
11/24: Saw new psychiatrist, Dr. W (referred by my therapist). She thinks the mood swings are very likely due to hormones, especially because the only other time I have had manic symptoms was when I was on Prednisone. (I always forget that steroids are also hormones.) She debated a bit out loud whether it would be better to start me on a mood stabilizer now or wait till next week to see if the GYN wanted to put me on hormones, giving me all the pros and cons, and then asked me what I thought. I told her my knee-jerk reaction was to say give me the meds, but that I would accept whatever she decided. We talked about it some more, and she ultimately decided to start the mood stabilizer first to give me the best chance at help next month. She started me on a low dose of Lamictal -- 12.5 mg (1/2 of the lowest dose pill). I noticed an improvement in the depression after about 3 days. I haven't had a chance yet to see if it will help with the mood swings -- started a new cycle on 11/25. Will follow up with her on 12/9 -- she said to wait to increase the dose until after I have seen her again. Oh -- she also said the Xanax was okay.
11/27: started taking new probiotic -- GI Pro Health Scdophilus 3+. This is a non-dairy acidophilus strain grown on a vegetarian cellulose base, guaranteed to befree of maltodextrin, inulin, and FOS. So far I am having alternating periods of constipation and diarrhea (was having only diarrhea before). I will stick with it to see if things even out. (they didn't; I stopped taking it after about 4 weeks)
12/2: Went to see GYN Dr. O to look into the hormone issue -- first visit. I don't have a regular gynecologist -- haven't found one I liked since leaving school. She didn't know anything about Lyme disease and was reluctant to treat. My options would be birth control pills or Lupron, both of which would stop ovulation altogether. Unfortunately, BC pills are no longer an option for me. I took them from 1982-97, then stopped from 1997-2003. When I tried to go back on them they made my blood pressure spike, and my doctor wouldn't let me continue. Dr. O specializes in bioidentical hormones, which is why I went to her, but she said that they cannot be used to control ovulation. She suggested that I wait and see how the Lamictal does with controlling the mood swings, and said I could come back if it didn't work and I wanted to try Lupron.
Questions for today:
I don't feel like I am getting better. Could we talk about this? I have been on antibiotics for 9 1/2 months now. I am demoralized and confused about how to proceed. Flares are still coming every few days, worse with exercise. I still have all the same symptoms.
You said at my last appointment that you weren't really sure what to do with me either. Who do you consult when you're stuck? Do you feel stuck now?
no responseI would like to talk more about Babesia. At appt #1, you told me you thought I had it, and ordered new labs for it (previous labs were negative). At appt #2, you told me you wanted to hold off treating for it for another six weeks, even though you still really seemed to think I have it, because my labs came back negative again.
My labs for Bartonella, for which you are currently treating me, were also negative. You told me at my last visit that the Babesia labs are not very reliable. According to Burrascano, the tests for both infections are unreliable and diagnoses are usually clinical. Could you explain your thinking about this? Are you wanting to exhaust possibilities for treating one coinfection before you start treating the other one, to avoid confusion?
new treatment plan:
maintain minocycline, cipro
Alinia (gut) 2 weeks -- start 12/8 (I started 12/12)
if feel great, contine, refill Alinia
if not better, discontinue minocycline, cipro, alinia, and start:
Malarone (do not take with CoQ10)
protocol: 1 pill a day for 1 week; 1 pill twice a day for 1 week; 2 pills twice a day thereafter
NAC -- 500-600 mg twice daily -- start a few days before or at same time (this is to protect liver -- generally liver irritation would show after 6-8 weeks)
artemisinin twice daily 5 days a week -- resume with Malarone
Malarone and artemisinin are for Babesia. I started Malarone, NAC, and artemisinin on 12/26.Sleep -- still very poor. I'm waking in the middle of the night with pain and itching, then having a lot of trouble getting back to sleep. Pain: neck, hips, knees, and cramps in lower legs and feet. Itching: having systemic itching if I unthinkingly scratch what seems like a small random itch. Twice I have had a raised red rash, once on my ankle and once where my clothing was snuggest around my waist. Itching predated Lamictal. Spending 11-12 hours/day in bed, sleeping 7-8 hours/day. I'm currently using fragrance-free hypoallergenic everything -- conditioner (I clean my hair with that and apple cider vinegar), soap, dish soap, and laundry soap. I haven't changed my brands of anything lately (except new meds and probiotic), and haven't noticed any new ingredients. Can't relate itching to specific foods, but the palms of my hands get itchy after I eat. Do you have any thoughts about this? I had another round of allergy testing just before I started coming to you, but all it showed was that I'm becoming sensitive to the primary foods in my current diet (seems to happen every time I try to compensate by adjusting what I eat).
no help here
State of immune system: At my last appointment, I asked you if it was possible that my immune system was too compromised for the antibiotics to work properly, and you said yes. You wanted me to try taking transfer factors to boost my immune system. I haven’t used transfer factor before, nor did I know what one was, so I did some research. According to an article I found, transfer factors are small molecules that can transfer acquired immunity from one animal to another animal of a different species (i.e., cow or chicken to human). They are immunomodulatory -- they may boost some immune functions and suppress others. I called your office to get the name and manufacturer of the transfer factor product you sell, then called the company to try to get more information. The company wouldn’t tell me which transfer factors are included in their product or how taking these factors might improve my immune response to Lyme disease. That didn’t sit well with me, so I decided to hold off for now. 2 reasons: 1) this product is very costly and has no published record of effectiveness for my condition; 2) I have enough crazy reactions to meds and supps that I am concerned about taking things with undisclosed contents.
transfer factors -- this time she said that they are more for chronic viral infections (mono, EBV) according to Horowitz; Valtrex doesn't work
(so why do they sell Transfer Factor LymePlus? This sounds like a crock)
she said I could ask nurse to call and find out which TFs were present
I had mono in 1982 and EBV 1985
Are you familiar with the Marshall Protocol? Have you ever tried using it for treating Lyme and its coinfections?
Dr. M doesn't do Marshall Protocol -- she thinks it's quacky
"expect BP medicine to do everything" -- obviously hasn't read protocol
Exercise: I have been trying to walk again. I have been very depressed, and I am also losing a lot of muscle mass. Walking helps with my mood, but causes flares that last for several days. Do you have other suggestions?
no help hereDo you have any input on the mid-cycle mood swings/menstrual cycle/hormone question? For example, are you aware of a birth control pill that might be less likely to spike my blood pressure? Or, can you recommend a gynecologist to assist me with this? I would prefer to treat the hormone dysfunction rather than to add more drugs on top of it, if possible. Since the mood swings have been getting worse, doing nothing is not an option, so if it is not possible to treat it hormonally I will have to continue on the mood stabilizer route.
BCP without blood pressure spike? maybe Yaz. Lyme disease could cause hormonal levels to skew. She said that bioidenticals are nice -- certainly a possibility -- don't control ovulation, though (maybe this is what GYN was trying to say
Dr. M said we could do XRT lab salivary testing for estrogen/cortisol levels -- may not be covered by Medicare (check before sending in). She was suprised I was still having periods -- listed menopause as reason for salivary test. She was also surprised when my friend and I both asked "What about a baseline?"
New shrink referred to gyno/endo in January, so I think I'm going to wait till then
Wednesday, December 15, 2010
Gnarly
Two gnarly days...gnarly in the sense that they left me feeling all twisted up on the inside, and worn away on the outside, like a weather-beaten tree. Snow, ice, wind, and mountain pine beetles. That's me.
Yesterday I spent the afternoon at the ophthalmologist's office having my 6-month follow-up. First I had a mERG -- multifocal ERG, to the uninitiated; an ERG is an electroretinogram. For an ERG, a large contact lens hooked up to electrodes is placed in your eye and bright lights are flashed into the eye in several patterns to detect amplitudes of electrical responses in different parts of your retina. The mERG focuses on the central part of the retina -- important for me since that's the only part of my retina that's still functioning. The test showed that my left eye had gotten a lot worse since my last test. The readout from my left eyet now almost exactly matches my right eye -- in fact, when I saw the image, I assumed the doctor had pulled up the wrong test result. I have no electrical response anywhere except in my immediate central vision (if I'm reading the report correctly, a diameter of about 20 degrees). As I said to the doctor, it might explain why I have been walking into things more lately -- the dimmer switch has gotten turned down a few notches. That on top of having no peripheral vision = more collisions with inanimate objects.
It wasn't really a surprise, but I am sad about it. I had hoped that things would stabilize or even improve with the antibiotics. So had the doctor -- I could see the sadness in her eyes when she swivelled around on her stool after she looked at the readout on her computer. That was hard too. I have known her for several years, and she's a delightful person -- happy, loves her job, enjoys working and interacting with patients.
After that I had my eye exam. In addition to the doctor, two different medical residents were sent in to look at my eyes. This happens a lot -- I have a possibly unique autoimmune retinopathy, so everybody always wants to take a look at my retinas. What was different this time, though, was that no one asked my permission in advance. Students are slow, which is understandable, but my left eye is still very photosensitive, and the lights on the scopes are very bright. I find the experience painful and nauseating, and too much of it can trigger a migraine.
The other thing that was hard was that both of the medical residents treated my worsening mERG result as kind of an emergency. They wanted me to see a retina specialist; I have already seen several, and I let them know that politely, but they weren't ready to accept that there might be things they couldn't fix. They ganged up on me with my ophthomologist and he went along with them. So now I have yet another doctor's appointment that I'm not at all sure I want.
I asked my ophthomologist if seeing the retina specialist was likely to make any difference to my treatment, and he said "No, but I just really want to know what this is! And I'm sure you do too, don't you?"
Do I? I'm not sure it matters to me any more. 18 years ago, it might have made a difference, but at this point the parts of my retinas that are dead are dead. So, at least at the moment, it seems to come down to whether I want to humor the doctor. I'm just not sure that another lengthy and exhausting medical appointment is in my best interest, especially if nothing is going to better as a result. I will have to think on it...and maybe read a few of the retina specialist's papers. I have plenty of time -- the appointment is not until March.
That was yesterday. Today I had neurocognitive testing part 4b (as in, 4th round, second part). I'm in a flare, and was in a lot of pain and also worn out and sad from the day before. The flare was a full meal deal -- diarrhea, spinters in the joints, brain fog, hyperacusis, light sensitivity. The psychologist had planned 3 1/2 hours of testing, and I told him up front that I wasn't sure I was up to that. When we talked about my stamina before the first testing session, I told him that 2 hours was a good limit for me both in my ability to concentrate effectively and in not overdoing it physically. This must not have sunk in.
He unfortunately chose to start the second session by offering me his unsolicited opinion that, all other health issues aside, I perform best when I am not tired. This was said in a fatherly, patronizing tone. I just love it when health care professionals who have known me for about five minutes and lack a full grasp of my medical history start giving me opinions I didn't ask for. Do I sound bitter? Well, I am. I have had too much of this shit shoved down my throat. I know I'm in for it when someone says "Can I tell you what I think?" and then immediately launches into the opinion without waiting for me to give my permission. Inside my head I replied no shit, Sherlock, of COURSE fatigue affects my performance, but today actually the pain is more of a problem -- too bad there’s not much I can do about that. Or hey, here’s a thought, why not ask the patient what is hardest for her? She might have some ideas of her own, and you might even learn something useful that way. What I said was simply that this was actually a pretty average day for me (true), and that I would prefer to stop talking and get started so we could get through as much as possible.
So then we did tests and did tests and did tests. At one point the doorbell rang in the middle of a test. He wasn't happy, but I knew it was the pharmacy with my new Lamictal dose and Zofran (more on that later), so I apologized and told him I had to answer it. At another point, I guess he decided that I was responding too slowly, so he started reading the answers to me. It was frustrating, because I can often think of the answer if I have enough time -- I just have to sort through the fog in my head first. (Literally -- it's like wandering through fog with my hands out in front of me, waiting to bump into things and see if they are what I'm looking for.) So I explained that and asked him please to wait until I said I didn't know the answer before he supplied it to me. At 3, my pill alarm went off (I had warned him about that one) and I excused myself to take my meds and get a small snack. I got a brief second wind from the snack, but at 3:50 I suddenly crashed. I could feel myself bottoming out. I told him that I needed to stop really soon, and he said "Well, we only have another 30 minutes or so to go," and kept showing me new test pictures. Two pictures later I just melted down. I suddenly hit this awful state where words and pictures just stop making sense. Since light and sound were already painful, it was overwhelming. All I wanted to do was put my head down, close my eyes, cover my ears, and cry. He encouraged me to "just finish the last five images in this set" and I just lost it. I told him he had upset me by offering advice I did not ask for at the beginning of the session and that I had been doing my best to be polite and try hard on the tests. Then I reminded him of the 2-hour limit we had initially discussed, told him we had gone well past that in both sessions, and said again that I was extremely tired and needed to stop.
And then he got unpleasant. He told me that he didn't deserve to be spoken to like that when he had come for the express purpose of helping me. He told me that he had done me a favor by coming to my house -- which stung, because when we scheduled the second round of testing I made a special point of saying that I would come to him if it was more convenient. And then he said, in a sort of threatening way, that unless we finished the last five images in the subset we had been working on he wouldn't be able to score that test. So I told him I was willing for him to leave it out, and that I would also like him to leave out the remaining 30 minutes of tests, and just write up his report on what we had been able to finish.
So. Two things I have learned in the past two days.
1. I am not a toy. People must ask my permission to use various parts of my body as a medical school practice doll, and I have the right to say no. I think, from now on, if I don't get asked first, the answer is going to be no automatically.
2. No more health care professionals at my house except ones I already know and trust. I have had too many bad health care experiences, and in such cases I need to be able to leave. I can't leave if I'm already at home. Today would have been much simpler if, after 2 hours, I could have stood up, thanked the doctor, offered to schedule a return appointment to finish the testing, and walked out.
Also,
3. I think my new M.O. with health care is to have the absolute minimum necessary to get the job done. My number of appointments has been creeping up again, to 3 or 4 every week. It's too much, and burn-out is hitting me pretty hard.
Before I go to bed, I want to type in the new brain drug plan.
12.5 mg Lamictal daily gave me good depression control and adequate help with my mood swings, but shut down my gut and caused severe, full-body itching.
6.25 mg Lamictal daily and a couple of Dulcolax suppositories got my bowels moving again, but the lower Lamictal dose was no longer effective for depression. Still had some itching, too.
New plan: 10 mg Lamictal (compounded) daily plus 2-4 mg Zofran daily. My psychiatrist told me that Zofran is used for people with cholestasis and liver problems who have lots of itching, so we're hoping it will help with that; also, it has a common side effect of diarrhea, so we're hoping that will sort of zero out the constipating effect of the Lamictal. As Grandma used to say, I'm crossing all my fingers and toes that it will work. I had no idea how depressed I was before I started the Lamictal until I got that depressed again in a matter of days. Man, I so do not want to feel like that any more. Starting the new Lamictal dose tomorrow, and then the Zofran on Friday, so should have some idea of whether or not it's going to work by the time I have my next psych follow-up on 12/21.
Yesterday I spent the afternoon at the ophthalmologist's office having my 6-month follow-up. First I had a mERG -- multifocal ERG, to the uninitiated; an ERG is an electroretinogram. For an ERG, a large contact lens hooked up to electrodes is placed in your eye and bright lights are flashed into the eye in several patterns to detect amplitudes of electrical responses in different parts of your retina. The mERG focuses on the central part of the retina -- important for me since that's the only part of my retina that's still functioning. The test showed that my left eye had gotten a lot worse since my last test. The readout from my left eyet now almost exactly matches my right eye -- in fact, when I saw the image, I assumed the doctor had pulled up the wrong test result. I have no electrical response anywhere except in my immediate central vision (if I'm reading the report correctly, a diameter of about 20 degrees). As I said to the doctor, it might explain why I have been walking into things more lately -- the dimmer switch has gotten turned down a few notches. That on top of having no peripheral vision = more collisions with inanimate objects.
It wasn't really a surprise, but I am sad about it. I had hoped that things would stabilize or even improve with the antibiotics. So had the doctor -- I could see the sadness in her eyes when she swivelled around on her stool after she looked at the readout on her computer. That was hard too. I have known her for several years, and she's a delightful person -- happy, loves her job, enjoys working and interacting with patients.
After that I had my eye exam. In addition to the doctor, two different medical residents were sent in to look at my eyes. This happens a lot -- I have a possibly unique autoimmune retinopathy, so everybody always wants to take a look at my retinas. What was different this time, though, was that no one asked my permission in advance. Students are slow, which is understandable, but my left eye is still very photosensitive, and the lights on the scopes are very bright. I find the experience painful and nauseating, and too much of it can trigger a migraine.
The other thing that was hard was that both of the medical residents treated my worsening mERG result as kind of an emergency. They wanted me to see a retina specialist; I have already seen several, and I let them know that politely, but they weren't ready to accept that there might be things they couldn't fix. They ganged up on me with my ophthomologist and he went along with them. So now I have yet another doctor's appointment that I'm not at all sure I want.
I asked my ophthomologist if seeing the retina specialist was likely to make any difference to my treatment, and he said "No, but I just really want to know what this is! And I'm sure you do too, don't you?"
Do I? I'm not sure it matters to me any more. 18 years ago, it might have made a difference, but at this point the parts of my retinas that are dead are dead. So, at least at the moment, it seems to come down to whether I want to humor the doctor. I'm just not sure that another lengthy and exhausting medical appointment is in my best interest, especially if nothing is going to better as a result. I will have to think on it...and maybe read a few of the retina specialist's papers. I have plenty of time -- the appointment is not until March.
That was yesterday. Today I had neurocognitive testing part 4b (as in, 4th round, second part). I'm in a flare, and was in a lot of pain and also worn out and sad from the day before. The flare was a full meal deal -- diarrhea, spinters in the joints, brain fog, hyperacusis, light sensitivity. The psychologist had planned 3 1/2 hours of testing, and I told him up front that I wasn't sure I was up to that. When we talked about my stamina before the first testing session, I told him that 2 hours was a good limit for me both in my ability to concentrate effectively and in not overdoing it physically. This must not have sunk in.
He unfortunately chose to start the second session by offering me his unsolicited opinion that, all other health issues aside, I perform best when I am not tired. This was said in a fatherly, patronizing tone. I just love it when health care professionals who have known me for about five minutes and lack a full grasp of my medical history start giving me opinions I didn't ask for. Do I sound bitter? Well, I am. I have had too much of this shit shoved down my throat. I know I'm in for it when someone says "Can I tell you what I think?" and then immediately launches into the opinion without waiting for me to give my permission. Inside my head I replied no shit, Sherlock, of COURSE fatigue affects my performance, but today actually the pain is more of a problem -- too bad there’s not much I can do about that. Or hey, here’s a thought, why not ask the patient what is hardest for her? She might have some ideas of her own, and you might even learn something useful that way. What I said was simply that this was actually a pretty average day for me (true), and that I would prefer to stop talking and get started so we could get through as much as possible.
So then we did tests and did tests and did tests. At one point the doorbell rang in the middle of a test. He wasn't happy, but I knew it was the pharmacy with my new Lamictal dose and Zofran (more on that later), so I apologized and told him I had to answer it. At another point, I guess he decided that I was responding too slowly, so he started reading the answers to me. It was frustrating, because I can often think of the answer if I have enough time -- I just have to sort through the fog in my head first. (Literally -- it's like wandering through fog with my hands out in front of me, waiting to bump into things and see if they are what I'm looking for.) So I explained that and asked him please to wait until I said I didn't know the answer before he supplied it to me. At 3, my pill alarm went off (I had warned him about that one) and I excused myself to take my meds and get a small snack. I got a brief second wind from the snack, but at 3:50 I suddenly crashed. I could feel myself bottoming out. I told him that I needed to stop really soon, and he said "Well, we only have another 30 minutes or so to go," and kept showing me new test pictures. Two pictures later I just melted down. I suddenly hit this awful state where words and pictures just stop making sense. Since light and sound were already painful, it was overwhelming. All I wanted to do was put my head down, close my eyes, cover my ears, and cry. He encouraged me to "just finish the last five images in this set" and I just lost it. I told him he had upset me by offering advice I did not ask for at the beginning of the session and that I had been doing my best to be polite and try hard on the tests. Then I reminded him of the 2-hour limit we had initially discussed, told him we had gone well past that in both sessions, and said again that I was extremely tired and needed to stop.
And then he got unpleasant. He told me that he didn't deserve to be spoken to like that when he had come for the express purpose of helping me. He told me that he had done me a favor by coming to my house -- which stung, because when we scheduled the second round of testing I made a special point of saying that I would come to him if it was more convenient. And then he said, in a sort of threatening way, that unless we finished the last five images in the subset we had been working on he wouldn't be able to score that test. So I told him I was willing for him to leave it out, and that I would also like him to leave out the remaining 30 minutes of tests, and just write up his report on what we had been able to finish.
So. Two things I have learned in the past two days.
1. I am not a toy. People must ask my permission to use various parts of my body as a medical school practice doll, and I have the right to say no. I think, from now on, if I don't get asked first, the answer is going to be no automatically.
2. No more health care professionals at my house except ones I already know and trust. I have had too many bad health care experiences, and in such cases I need to be able to leave. I can't leave if I'm already at home. Today would have been much simpler if, after 2 hours, I could have stood up, thanked the doctor, offered to schedule a return appointment to finish the testing, and walked out.
Also,
3. I think my new M.O. with health care is to have the absolute minimum necessary to get the job done. My number of appointments has been creeping up again, to 3 or 4 every week. It's too much, and burn-out is hitting me pretty hard.
Before I go to bed, I want to type in the new brain drug plan.
12.5 mg Lamictal daily gave me good depression control and adequate help with my mood swings, but shut down my gut and caused severe, full-body itching.
6.25 mg Lamictal daily and a couple of Dulcolax suppositories got my bowels moving again, but the lower Lamictal dose was no longer effective for depression. Still had some itching, too.
New plan: 10 mg Lamictal (compounded) daily plus 2-4 mg Zofran daily. My psychiatrist told me that Zofran is used for people with cholestasis and liver problems who have lots of itching, so we're hoping it will help with that; also, it has a common side effect of diarrhea, so we're hoping that will sort of zero out the constipating effect of the Lamictal. As Grandma used to say, I'm crossing all my fingers and toes that it will work. I had no idea how depressed I was before I started the Lamictal until I got that depressed again in a matter of days. Man, I so do not want to feel like that any more. Starting the new Lamictal dose tomorrow, and then the Zofran on Friday, so should have some idea of whether or not it's going to work by the time I have my next psych follow-up on 12/21.
Saturday, December 11, 2010
a thing I keep forgetting
Something is funny with my right ear. It feels full, and when I move I hear an echo like there's water stuck in there. It has been like that for a long time, but I keep forgetting to mention it.
Waiting for a cab
On Thursday, after my Lamictal follow-up, I went to Whole Foods. After I made my purchases, I went to sit in the seating area while I waited for my cab. The store is in a renovated mill building, and the seating area is lit by natural sunlight coming in from high clerestory windows. It is separated from the checkout stands by a half wall. This week, the wall was topped with orchids -- mostly pink, white, and varicolored Phalaenopsis, but there was one plant that looked like a Dancing Lady. Its flowers were yellow flecked with red, each flower with one lower petal enlarged and ruffled like the skirt of a ball gown.
I sent my grandma a Dancing Lady orchid during her last hospitalization with congestive heart failure. I had flown out to be with her, but she didn't want me to stay until the end. When I got home, I sent the plant. I remembered, as a child, her waltzing me around the living room standing on her shoes, and telling me she loved to dance. I think I wanted her to know in some way that that part of her was still alive to me, and would remain so, even while she lay dying in a hospital bed.
The entrance to the seating area was blocked by two people: a store clerk who was replenishing the napkins and utensils next to the microwave oven, and a middle-aged woman wearing a full-length fur coat the tawny color of caramel. She made a striking impression: high-heeled dark leather boots, high-necked sweater and pants of rich cut and materials, shoulder-length hair either straightened or in a weave, and gold jewelry, with the matching flash of gold dental work in her mouth. She was talking on a cell phone, but looked directly at me and asked "Are you sitting down?" I smiled and said that yes, I was planning to. She looked surprised and told me she had been talking to someone else. As I moved around the table to sit, I noticed that there was a second woman behind me.
The second woman was practically invisible compared to the first one -- short where the other woman was tall, graying hair cropped in a natural cut, unobtrusively dressed in dark jeans and a fleece jacket. The two women sat down next to me and began to talk. We were sitting at either end of a table sized for six people, so I turned away slightly to give them some privacy, but I couldn't help hearing what they were saying.
At first they talked about a mutual acquaintance who was dying of pancreatic cancer. The taller woman remarked that the sick friend had certainly abused her body. The shorter woman replied she didn't think the cancer had anything to do with how the sick woman had taken care of herself, and added that with pancreatic cancer, there was nothing you could do -- it was a death sentence. The taller woman replied that you never knew what was in God's will. The shorter woman said, "No, I saw her recently, and she is on her way out."
Then the conversation turned to relationships, and the taller woman asked the shorter woman how hers was going. The shorter woman said that she had been dating someone for several months, and the taller woman asked her if she was thinking about marriage. The shorter woman said, "No, no, no. I couldn't go through that again. My husband died of pancreatic cancer, you know. Watching him die was I think the hardest thing I ever did. At the funeral, when they closed the casket lid, I felt the pain down deep in my gut. For weeks afterwards, I kept wishing that casket would open up and he would climb out...but other times, I knew he was gone."
I wanted to say something to the shorter woman when I left -- to give her my condolences. I know that pain of loss...but then I would have had to acknowledge that I had overheard the whole conversation, so I didn't say anything.
I don't know why, but this conversation made a strong impression on me, and I wanted to write it down. I tried to get it as close to right as I could, two days later.
As for the Lamictal...here is the scoop.
The 12.5 dose caused serious constipation and itching. However, it was working effectively to help my mood. We talked about other possible options, and the psychiatrist brought up Lithium, but she said she was concerned that, with my super-slow metabolism of drugs, I might end up with toxic levels in my kidneys. So, she suggested that we try an experiment of cutting my Lamictal dose even smaller, to 6.25 mg per day, to see if I could retain the benefits without the side effects. After a 48-hour break, I took the first 6.25 dose yesterday morning. I also had what I think might have been my fourth mood swing episode yesterday, and if I'm right, it was much less severe than the last one. This time, I only had the "up" without the "down", and it seemed to be one sustained episode that lasted for several hours. Being that "up" makes me feel anxious -- the metaphors I thought of this time were a pop bottle after it has been shaken, and Road Runner -- but I was able to control the anxiety with a half a tablet of Xanax (also approved by the psychiatrist). As with the other episodes, I was very tired afterwards, and I slept for over 11 hours last night with vivid dreams.
I sent my grandma a Dancing Lady orchid during her last hospitalization with congestive heart failure. I had flown out to be with her, but she didn't want me to stay until the end. When I got home, I sent the plant. I remembered, as a child, her waltzing me around the living room standing on her shoes, and telling me she loved to dance. I think I wanted her to know in some way that that part of her was still alive to me, and would remain so, even while she lay dying in a hospital bed.
The entrance to the seating area was blocked by two people: a store clerk who was replenishing the napkins and utensils next to the microwave oven, and a middle-aged woman wearing a full-length fur coat the tawny color of caramel. She made a striking impression: high-heeled dark leather boots, high-necked sweater and pants of rich cut and materials, shoulder-length hair either straightened or in a weave, and gold jewelry, with the matching flash of gold dental work in her mouth. She was talking on a cell phone, but looked directly at me and asked "Are you sitting down?" I smiled and said that yes, I was planning to. She looked surprised and told me she had been talking to someone else. As I moved around the table to sit, I noticed that there was a second woman behind me.
The second woman was practically invisible compared to the first one -- short where the other woman was tall, graying hair cropped in a natural cut, unobtrusively dressed in dark jeans and a fleece jacket. The two women sat down next to me and began to talk. We were sitting at either end of a table sized for six people, so I turned away slightly to give them some privacy, but I couldn't help hearing what they were saying.
At first they talked about a mutual acquaintance who was dying of pancreatic cancer. The taller woman remarked that the sick friend had certainly abused her body. The shorter woman replied she didn't think the cancer had anything to do with how the sick woman had taken care of herself, and added that with pancreatic cancer, there was nothing you could do -- it was a death sentence. The taller woman replied that you never knew what was in God's will. The shorter woman said, "No, I saw her recently, and she is on her way out."
Then the conversation turned to relationships, and the taller woman asked the shorter woman how hers was going. The shorter woman said that she had been dating someone for several months, and the taller woman asked her if she was thinking about marriage. The shorter woman said, "No, no, no. I couldn't go through that again. My husband died of pancreatic cancer, you know. Watching him die was I think the hardest thing I ever did. At the funeral, when they closed the casket lid, I felt the pain down deep in my gut. For weeks afterwards, I kept wishing that casket would open up and he would climb out...but other times, I knew he was gone."
I wanted to say something to the shorter woman when I left -- to give her my condolences. I know that pain of loss...but then I would have had to acknowledge that I had overheard the whole conversation, so I didn't say anything.
I don't know why, but this conversation made a strong impression on me, and I wanted to write it down. I tried to get it as close to right as I could, two days later.
As for the Lamictal...here is the scoop.
The 12.5 dose caused serious constipation and itching. However, it was working effectively to help my mood. We talked about other possible options, and the psychiatrist brought up Lithium, but she said she was concerned that, with my super-slow metabolism of drugs, I might end up with toxic levels in my kidneys. So, she suggested that we try an experiment of cutting my Lamictal dose even smaller, to 6.25 mg per day, to see if I could retain the benefits without the side effects. After a 48-hour break, I took the first 6.25 dose yesterday morning. I also had what I think might have been my fourth mood swing episode yesterday, and if I'm right, it was much less severe than the last one. This time, I only had the "up" without the "down", and it seemed to be one sustained episode that lasted for several hours. Being that "up" makes me feel anxious -- the metaphors I thought of this time were a pop bottle after it has been shaken, and Road Runner -- but I was able to control the anxiety with a half a tablet of Xanax (also approved by the psychiatrist). As with the other episodes, I was very tired afterwards, and I slept for over 11 hours last night with vivid dreams.
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