Sleep and Meds: Working against Each Other

You take Zyprex, which is soporific, but at the same time take Wellbutrin AND Rexulti, which both can cause insomnia. And if I understand correctly, you plan to taper off Zyprexa completely in favor of Rexulti. But then what will happen with your sleep? If you find it hard to fall asleep now that you still have some Zyprexa in your blood, what will happen when you don't? What's the pdoc's plan wrt sleep?

Yes, you are correct about my meds. I have no idea what pdoc's plan is re: sleep. I had insomnia pretty bad when I first started Wellbutrin. I am having some again. I did sleep last night. Its hit and miss. Melatonin is hit and miss too. I'm using my weighted blanket every night. What will happen without zyprexa indeed. I am determined to get off zyprexa and stay off it! I see pdoc in two weeks, so I'll bring this up, even though I don't think I'm going to be completely off zyprexa for another couple months at the rate I'm going.

The above was a post conversation on a bulletin board I had today. The second paragraph is mine, the first is another member's. She brings up a good point. As I think this through, or get more information- especially from my psych nurse practitioner- I'll post more.

Ways I SHOULD know I'm manic

I know I'm manic when I've figured out the thread that binds the meaning of my life. And then I start jumping in circles. And water in the shower feels orgasmic on my skin. And I stop sleeping and don't feel like I need any sleep anyway. And I can't stop talking a mile a minute, and tapping on things over and over. And I want to scream and so I jump in circles some more. I start hallucinating angels, or aliens. These are just a few ways I should know I'm manic. Emphasis on "should".

Rexulti & Zyprexa Dose Changes Again

I talked with her nurse this morning to report how the (total) 2 mg increase since Friday is working. I told her I'd been sleepier but my symptoms have improved. So now I wait for Pdoc to call back and hopefully call in a new script of the new dose as I'll be out of this one (1 mg) soon at the new rate.

I'm waiting for pdoc to call me. I'm beginning to think she won't. (It's 5:35 p.m.) I thought she said to call her nurse this morning and report how I am doing and the nurse would email her and she'd get back to me about my Rexulti. I need my new script in the next few days because I will run out of the other one.

My psych nurse is usually really understanding and nice. Her nurse is usually businesslike and today was no exception. I mean, maybe its just a case of her being slammed today, but tomorrow, I'm calling again and telling them that I'm running out of pills the next day. That's something I didn't realize or tell them today.

January 25: I had an appointment with a doctor at the hospital today. We were looking at my liver because I have fatty liver disease, I think in part from zyprexa. But we went over everything. They did an ultrasound. I was told to eat more fruit and veg., exercise, cut carbs... basically everything I'm already doing. They weighed me and although I've lost weight according to my scale at home, this scale thought my jeans and sweat shirt should be counted too. Above all, they took a detailed medical history, including my premature birth, all my surgeries, my asthma, my drug allergies, etc. But they just finally came up with "You're fat; lose weight". They did blood work- a bunch of it. I don't know the results of my ultrasounds. My primary doctor will get back to me with the results and what to do next.

On the Rexulti front, I called the pharmacy to see if a script had been called in but after being on hold for 20 minutes, it hadn't. My psych dr. hasn't called today again. I'm not sure that she needs to call, but just to get straight what the plan is would be nice. I see her on Monday. (Today is Wednesday.) But tomorrow is my last day of pills and I would go three days without until my appointment.

January 26:My nurse practitioner called back!!!

We switched my appointment to two weeks from now instead of Monday because she switched my dose of Rexulti from 2 mg to 3 mg (I had only been on 2 for a week) and my Zyprexa is down from 12.5 to 10. (Baby steps.) I'm going to go to the pharmacy asap. Gotta go pay bills at my mom's. Have something to eat, too.

I'm so happy now!!!

The pharmacy had to order my Rexulti (guess they didn't have 3mg) so it will be in tomorrow after 2. That's right before I have to get my daughter to take her to the doctor. I'm also having lunch with friends at 12. Whirlwind day. And I'm just home from an intense church choir rehearsal. Sight reading a Haydn mass. I'm beat.

January 27: Picked up new dose of Rexulti and lower dose of zyprexa. We're getting there slowly but surely! I had a sleepless night the night before last, but I am not sure if it was related to Rexulti (happened before the higher dose) or something else.

Rexulti Change Effects On a Long Day

Today I made a late start but made it to church/choir with my youngest. We had lunch with my ex between church service and when we are meeting to leave for another church to sing another service. Personally, I'd like to nap now but I can't. No time, no CPAP, no bed. My lunch wasn't exactly on my diet but I'll be good later. It was nice of my ex to buy us lunch.

Drowsiness sedation fatigue.... All listed as side effects of Rexulti. I just took my second increased dose of Rexulti about an hour ago and I feel so dozey. My choir is supposed to leave in 45 minutes for a gig. I'm not driving thank goodness! But still I just want to be in bed.

I pushed through the gig. Pdoc just increased the dose to deal with anxiety and guilt.

Sang gig. Was so disorganized. Missed half of one piece!! I couldn't find it!

I think I'm gonna explode! My daughter is at her boyfriend's and is ignoring me when I said I want to pick her up. My son is talking to my friend here and I want to leave and go to bed. I want to scream at everybody.

Omg my friend won't shut the hell up about politics!!

**********************

These are a few posts I made on a bulletin board today. I had to be up for church choir at the normal time, but we had an extra service at 4:30 about 45 minutes away at another church. Between the time that the service at our church ended and the time we had to leave, my ex husband and our youngest and I went out to eat. I took my second day of increased Rexulti. (Double the original dose.) About an hour later, I began to feel very drowsy and fatigued. Not just tired, but as if I were ill, without actually feeling sick. I pushed through and went to the service. However, I couldn't track very well. I wasn't sure what was coming next to sing most of the time and even one piece I couldn't find until we were half way through it! Then later in the evening, I became agitated at my daughter for not answering her phone (turns out she lost it; is that better?) and I became angry at my friend for not shutting up about politics. He just kept going on and on and on! That might be part of my problem: I'm tired. Makes one grumpy. Starting out tired from meds then going on a trip then doing a lot of work (singing) then more driving (even though I was a passenger) takes it out of you. That plus I visited with a friend for a bit after. The politics talk further exhausted me.

So I'm not going to call my "pdoc" about this because I prefer it to feeling guilty and anxious and I do so want to give Rexulti a chance. Feeling drowsy mentally and physically is an ok side effect to doubling a dose, I think. Maybe tomorrow, things will even out a bit, though.

Anxious

Maybe it's my money snafoo or my EBT card taking days to come in the mail* or something I can't put my finger on. I went to church choir rehearsal but I'm still anxious tonight. The singing did well at distracting me I'll give it that. And now I'm under my beloved weighted blanked which is touted to be great for erasing anxiety. I just dunno where it came from. I feel like something (s) is going to go really wrong and my brain won't stop trying to figure out what it is.

*My original card wore out. The strip wore right off the plastic card in several spots.

EDIT 1/20/17: I just called my pdoc's nurse. I told her that I've been feeling anxious for the last week, that its random and not to do with any one thing. I keep feeling guilty by random things I've done. She said she'd talk with my pdoc and get back to me. I hope they don't change my meds; well, if they want to up my Wellbutrin, that would be okay, but I like the Rexulti and I'm happy going down on the zyprexa. I'll update when she gets back to me. Its weird though because my mood, in general, is my silly chipper, more hypomanic self, today. That mixed with anxiety is a weird combo.

My psych nurse practitioner just called! She wants me to double my Rexulti to 2 mg through Tuesday and then call her and report how I'm doing. Actually, she wants me to report to her nurse who will then email her and then she (pdoc) can call me back. She thinks that I need more Rexulti in me since the Zyprexa is being lowered and that this is why I'm having anxiety and guilty feelings. Once I decide that the Rexulti increase has helped, she will call in a new script for 2 mg so I won't run out early.

Diagnosis

They say it takes an average of 10 years to get diagnosed as bipolar. I was showing symptoms early in life, but was not diagnosed. I even asked to see a psychiatrist at age 16 but was told I was "a normal teenager".

At age 27, I decided that I needed to work through being an adult child of an alcoholic. I found and saw a specialist in this. As I recall, we didn't get very far, and I never went to any meetings with other "ACOA"s. There are definite traits to being an adult child of an alcoholic and I bought books about this a few years later and tried to work through this. I also bought books on "highly emotional people". I thought I was just full of emotions and "extra sensitive". Of course, I read only a few pages of each.

When I first started having more symptoms at age 33 or so, I saw a doctor that worked with my primary doctor. He thought I had PMDD: Premenstrual Dysphoric Disorder. My primary reviewed this and referred me to psychiatry. There, I was seen by a student psych. nurse who diagnosed me with "bipolar NOS". (Not Otherwise Specified.) (The diagnosis of PMDD was thrown out.) It took several months for them to finally give me the specific marker of "bipolar I". I remember being psychotic before my first appointments, but you don't just walk into an appointment and say, "Hi. I was psychotic 2 months ago. Give me drugs." I was put on Depakote and the rest, they say, is history.

I'm still ACOA, but the symptoms that I thought were because I'm ACOA, and emotional person can be attributed to being bipolar.

Sideways

Usually I feel great but today I feel anxious and intrusive thoughts have entered my mind at the thought of losing my health insurance. Didn't I just go through this a few weeks ago with DHS? I can't not take my meds. After church today, my ex-husband teased me about "You'd better get all the tests you can before your health insurance goes away,". He was referring to Trump cancelling- or severely paring down, I suppose- Medicaid. I think he's going to do it to Medicare, too, if I'm not mistaken. This has made me anxious. I know! Go use my blessed blanket, right? The weighted magical blanket that's supposed to cure anxiety. Well, I just might! I just dealt with my insurance maybe being cancelled a few weeks ago, and now this rumor is flying around like wild fire. If I have to go without my meds, serious shit is going to hit the fan. I don't want to know what I'm like off meds, and I'm sure the people who know me don't either. I know how I am with breakthrough symptoms- like hallucinations- on meds, I don't know what my brain would do with no meds at all. Destabilize is all I can think of.

I was feeling great yesterday, because I got up early and got new tires on my car. Then I got new jewelry for my nose and my lip. Now today, I'm feeling depressed and guilty for doing that, even though the car needed tires badly. I didn't need new jewelry. So up down up sideways (anxiety) down.... Plus, last time I paid the rent, I went out and had a check made out for what I thought the rent was (what it had been previously) plus a guess on my water bill. (Included at the same time as the rent.) When I got to the complex office, they told me I don't owe rent this month. (Section 8 paid it all.) But I already had the check and made out to the complex. So I just gave it to them figuring they'd give me a credit like they did another time. Now I'm worried that, even though they gave me a receipt, they'll take that credit and say it never existed. Sideways thinking? See? I'm not always on top of everything. I'm going to panera with my younger son in a bit. Maybe that will calm me down.

She thought I was weird

Spent $201 this morning...

...on two new tires for my car. The left front had a nail in it, leaked (ya think?) every 2 or 3 days down to half inflated, I hit a pothole (HARD!) the other day, and the wear indicator in the tire was showing very well. They don't fix them, either! You have to see them coming and go around them (without going into traffic in the other lane of course). Unfortunately, last Sunday or whenever it was, I didn't see that pothole for ANYthing. I banged right into it full speed. It made a noise I don't want to hear again. I thought for sure we were 100% flat. Bent-the-rim flat. But, nope. Tire was okay. A little scraped up maybe. The thing making it flat (slowly) was that nail that was in it, come to find out. The right front was just as worn as the left, but no nails or potholes or leaks. So in I went for new tires. Warranty on them plus a snow-grade version added up to $201 total. Only problem is, I asked them to rotate them; they hadn't. They left the new tires on the front. My friend said that's best because its a front-wheel drive, but my mom's husband said you have to rotate every six months and mine hadn't been in quite a while. I'm conflicted, but I did have them rotated. Cars are expensive. This has something to do with bipolar how? Just about spending money - should I have gone for the cheapest tires? I went for a tiny bit more expensive. I just feel like I should never spend money. I just spent money on shoes for goodness sake! I know the car is safer now especially if it snows. It certainly seemed to handle better on the way home. I did kill the half-hour wait while they fixed it up by walking a few businesses down the street to Starbucks and back. Probably didn't burn the calories I drank, but oh well. I talked with a lady who was doing Tunisian crochet while she waited. It looks like a mix between crochet and knitting. Its very interesting to watch. She told me about it for a bit. I'll have to tell my mom, as she crochets. I was my usual talkative self with her. Conversation with her was fine, but by the end I think she thought I was crazy. I do tend to talk about weird stuff and at a weird pace sometimes.

Monsters Waiting for Me

I get to feeling like there are long stretches with nothing to do. I will have choir tonight but right now it feels like an eternity until we have to leave. Then I start feeling anxious. This extra space scares me. Like there are some sort of monsters in it waiting for me.

Day 7 on Rexulti & Antipsychotics I've Been On

I haven't noticed any side effects on Rexulti. This is HUGE! I tried so many other drugs a few years ago (wish I'd documented them here) that didn't agree with me. The only one I wrote about is Latuda, but I didn't write what my side effects were. At any rate, I must've tried seven atypical anti-psychotics before Rexulti: Geodon, Latuda, Abilify, Risperdal, Seroquel, Saphris, and Zyprexa. I had different side effects to each. I remember Geodon made me feel like I'd eaten the sun, or an atomic bomb, or just plain a bunch of radiation! I had akathisia with Abilify. Seroquel I had hives and a swollen throat (I believe). Risperdal raised my prolactin; I was walking around looking for "the baby". "Where's the baby?" I kept asking myself. Of course, I had no baby. My body was making milk from the Risperdal! Zyprexa, of course, the one I've been on the longest and am weaning off now, gave me very high cholesterol (to the tune of 700+) and a fairly large weight gain. I've heard Rexulti has the ability to do this, too, but my psych nurse practitioner sings its praises so I'm going to do so also. I'm getting to the end of the list of atypicals. I have never tried a typical antipsychotic, and I probably won't unless we run out of options. I feel like I've left out a drug or two that I've tried. I'm just happy that I haven't had any side effects on Rexulti after seven days on it! Tomorrow, I get to start titrating down off Zyprexa. Yay!

And Finally.... The Weighted Blanket!

My weighted blanket finally arrived via UPS. I had arranged to pick it up at the store today. The box was very heavy. They said it was 21 pounds. I went on one stop on the way home. When I got home, I took a shower and started some laundry before I got the blanket out of the box. I sat on couch with it. The material is a lot thinner than I thought, even though it is flannel. The whole thing is very heavy, which is its purpose, so that's good. The pellets in the pockets are very tiny; I had pictured them a little bigger for some reason. I tried it sitting on couch watching tv. It is a twin size. If I'm sitting with my feet tucked up next to me, it covers me feet and up to my arm pits. I sat in it quite a while. Its kind of cold, actually. Maybe it will warm up at night with other blankets over it, or it won't matter because I have a heated mattress pad. I had thought that they hadn't taken the money out of my account, but I did a search on my online banking account and found that they indeed did- the day after they accepted my order three weeks ago! How did I miss that? Which reminds me: It wasn't cheap, so I'm extra particular about the final product. I haven't tried it while anxious yet. I haven't let my kids try it to see what they think. (Even though its technically too heavy for them.) I almost want to see about making a pocket for the whole thing in a thicker flannel that's softer. I wonder how that would work. This blanket is cold. The people who run the site that I bought it from say people who have hot flashes shouldn't get flannel but I find this blanket not warming at all. I will give it plenty of time before I make a final yay or nay on this blanket.

I just tried it in bed for a few minutes. Its much better this way. It still covers my feet up to my arm pits, but the weight is evenly distributed and I can feel the weight better that way. After only a few minutes in bed like this (and with my heated pad on), I started to get pleasantly dozey and fell asleep. More points in the positive for the blanket. Its still cold, but with a comforter over me and the heating pad under me I was plenty warm.

I had a thought about why it might be cold. Its been in delivery trucks and warehouses for the last five days and its winter. I know it at least sat all night at UPS here in Michigan last night. I'll let it warm up in the dryer tonight before bed and see if that helps.

The blanket's makers included a small letter with the blanket in the box. One of the things it says is please write and give your feedback soon. I think I'll give it a week to be sure.

There are many things that the blanket is said to help with. For me, I am hoping it will help with anxiety, stress and tension. On the outside chance, it may help with my sleep apnea. (I still will wear my CPAP.) And, happily, I look forward to it helping with menopause when that day comes. (I'm relatively close, but haven't reached that year yet.) Other things they say it helps with are alzheimer's, parkinson's, post traumatic stress disorder, restless leg syndrome, ADD/ADHD, asperger's and other autism spectrum disorders, and sensory disorders of any kind.

EDIT: for January 10: I slept with it last night. I'd put it in the dryer on low for just a couple minutes before I took it up to bed. It was a little too warm that way. Probably because I have the heated mattress pad and it had been laying on that, too. Once I got under it, it was too warm. I stuck my feet out and that was better. I think its either put it in the dryer, OR put the heated pad on- not both. When I woke up this morning, the first thing I noticed was that I remembered my dreams in a detail that I had not in years. In fact, I hadn't remembered them at all for time out of mind. I took this to mean that I slept very well with the blanket. Even now that I type this, I feel more awake than I have in ages. I'm not planning my next nap or day dreaming about when I can go to bed tonight. For me, that is huge. My criticisms of the blanket at first are giving way to love.

Insurance Answer & Weighted Blanket

After two days of being closed, I finally got to go to the Social Security office. I wanted to ask them about what DHS said about my Medicaid being cancelled. After little to no wait- yay!- I was told that yes I still have Medicaid but its through Social Security now instead of DHS. I won't have Medicare until I've had disability for 24 months. Furthermore, nothing will change! My insurance cards should be the same, and my insurance should tick on just like it has. So nothing is getting cancelled.

My weighted blanket has shipped! The last time I checked, they hadn't charged my card, but I'm sure that will change soon. Its supposed to arrive Monday at the earliest. (Today is Friday.) I arranged to pick it up at the UPS building, because I can't be sure I'll be home when they try to deliver it. (They don't just leave packages at apartments.)

Rexulti II - Side Effects?

My appointment with my psych nurse practitioner was good. We discussed Fitbits- they track your exercise habits. I would get one were they not $125. (And had I not just spent more than that on a weighted blanket!) Seems like a utility bill to me. Apparently, my mood is good, which, considering what I've had to go through lately, I'm surprised about! Of course, we talked about Rexulti. She sang its praises and said it has fewer side effects and many benefits. We are weaning of Zyprexa very slowly, but that's okay because I think I have enough to do that. The Rexulti ended up costing insurance $1152.xx! Plus, now someone tells me you can have Medicaid and Medicare at the same time, so I need to go to the Social Security office and talk with them about that and about getting my cards. Then, I need to go back to DHS and see what's up with them telling me my Medicaid is cancelled because I have Medicare. After I realized that Social Security closed at 12:30, I went to the mall and waited for my friend, K, to call. He did, not long after I got there and we went to Panera and had lunch. Still no weighted blanket (or email from them) and still no check from the bipolar study, but I have this hunch that one or both of them will arrive on Friday while I'm out at Friday Lunch. Oh- I did take the first Rexulti pill around 12:45. No side effects yet, except I'm a little tired. Maybe the side effects will add up as the days go on, or maybe I won't have any at all! (Yay!)

Medicare, Disability & Social Security

The Department of Human Services was finally open today. I brought the paper that said my Medicaid was cancelled as of January 1st. They told me I need to reapply as I do still qualify for Medicaid. Then, someone else looked at my paperwork and took it away for a bit. When she came back, she said that I now have Medicare and my Medicaid ends on February 2nd. That is good news as far as my appointment tomorrow is concerned. (Can have the appointment with my psychiatrist/nurse practitioner and pick up the Rexulti.) But I still don't have any Medicare cards for February. A friend said they will come in the mail, but I looked through everything I have from Social Security and while it is helpful, nothing mentions Medicare. I may go to the Social Security office in town in a few weeks if I don't get my cards in the mail. I am guessing that I'll have the infamous "Part D" for my prescriptions. Whether this will pay for Rexulti - I looked it up; its about $1000/month!- is still up in the air. (I was debating paying in cash, but that obviously wasn't going to happen!) My appointment tomorrow is in the morning, so I'll have an update for what we decided earlier than later. If we decide to keep Rexulti, I'll go to the pharmacy and pick it up. (Through Medicaid.) If we decide to stay with Zyprexa, I'll be disappointed, but what can you do? Medicare is a new beast. Its better than a sharp stick in the eye. I wish I could have both Medicaid and Medicare, but apparently not. I'm also not sure how long SSI/SSDI lasts. It will only be a year on the back payments, I believe. As for the monthly payments, I don't know. My friend says you can keep Medicare as long as you're still disabled. I don't know how you undo bipolar disorder. So far, even my stable periods always come crashing down when mania or depression come to haunt me again.