Up-to-date

In July I learned about a new formulation of Seroquel (Seroquel XR) that allegedly decreased sedation in people on high doses, which was me. I convinced my doctor to let me try it in August.

The dose was supposed to be the same, but in 2 pills rather than 3. The doctor repeatedly reminded me to be careful of that. Immediately I took 3 pills, a technical overdose. I slept all day the first day and thought it was just an adjustment. The 2nd night when I started feeling odd I realized that it was too much. I tried, for the first time ever, to use the emergency pager and the resident didn't answer. (Scary huh?) So because I was falling asleep I looked it up, found someone had survived much more than I took, and went to bed and called off the next day.

(That may not be the preferred method of handling such things, but in my case there are circumstances making it more ok. First, where I live is so far from a psych ward that getting to a hospital qualified to check me out would be a mess. Second, I am a healthcare worker and well-versed in meds. So, maybe don't do the same, but it's what I did).

I kept trying to get back on a full dose after a day or two off to let my body clear it, and every time I went back to the old dose all I could do was sleep. So I decided to cut to half for a week, then deal with the sleepiness over the weekend. I figured my mood would change but I could handle a few days.

It turned out that I was totally wrong. I felt good on the lower dose. So, after checking with my doctor, I left it there for the remaining time until my next visit to her. And there it remains, 2 months later.

However, I have had work issues. Big ones. And so I've increased my imipramine dose to 70 mgs, close to the cut off for me based on other years.

And my regular doctor added more meds for constipation (this time Senna, plus 500 mg of colace (that's a lot). I hurt my back so I have a PRN muscle relaxant but I think it makes me throw up (I did the first time I took it and not before nor after). And I currently have a UTI so I'm on Cipro.

So, the current med list is the same number of pills, but slightly less punch. I'd not even remembered until the family doctor the other day that I'd been on 650 mg of Seroquel at one point and now am at 300; that jump seems even bigger.

This is a major point as in all my years on meds I've NEVER reduced the dose of anything significant (my antidepressant goes up and down tiny increments most people wouldn't notice, that kind of thing). Not to mention that I've stayed really good for a really long time (11 months!!!! with only 2 episodes and neither that bad)

Time passes so fast now

Ever since Seroquel finally fixed my life time passes so much faster. After literally years of monthly medication changes, now I don't even think much about them.

At this point I am taking 33 pills, with 2 of them divided so that it feels like 35, per day, plus anxiety meds PRN (maybe 3 per week). When you gag like I do, that means it IS 35. Just today I ate breakfast, then vomited as I brushed my teeth with no warning whatsoever. It's impossible to know when it will happen.

I am doing very, very well this way. The only real problem is morning sedation. Often I'm awake at 8:30 or so, but cannot function until 10:30 or 11. There is a new version of Seroquel out which is extended release and I read that it is supposed to help people on a high dose (me!) to have less morning sedation. I'm hoping to start that soon; my doctor was doing some checking because changing anything with me is touchy, even though at this point something needs to be done.

Otherwise, I still have extra weight and it's all distributed funny so that I get really upset about how clothes don't fit, and I am still suffering with terrible constipation no matter what I do, but considering the high doses of the meds I'm taking I am doing great.

I hope it's another 4 months before I have to update here again!

Update

It's been a long time since I posted here. That's mainly because for the first time EVER my meds have essentially been the same. I've acquired some more med issues and so I guess it is time to update.

In January I changed jobs. When I went for my pre-employment physical I complained that the Miralax added in December to help with constipation was not really working. The doctor noticed my lips were the kind of dry that means really dehydrated and became concerned. I had to answer a number of questions about my pee, and give a urine sample, and left with a diagnosis of diabetes insipidus. This is a direct result of lithium and means that my kidneys are not concentrating my urine anymore, so that I pee out everything I drink rather than my body having water to work with.

After a lot of doctors talking to other doctors (there are now 4 involved in this mess) we came to the conclusion that letting me take lithium is important as long as possible. So I started taking a diuretic called amelioride which controls how much I pee. I cannot express the relief at peeing with half the frequency and much less the volume as before. One of the tests I did involved a 24 hour urine collection, and I gathered 3 times the normal amount. I can't imagine how much that would have been without the amelioride, which I now take at a higher, more effective dose.

Last month, in a truly momentous occasion, my psychiatrist allowed me to LOWER the dose of my anxiety med because I'm doing great but am too sedated. I have never lowered the dose of anything because I was doing well. Six years from starting lithium I am getting better.

I am taking I think 32 pills/day still. I don't see that changing for a long time, if ever. But I can't imagine anything better than feeling so good at last.

More change

I saw my family doctor yesterday and my hypothyroidism has worsened. Plus I needed real treatment for the constipation which has made my life miserable since starting Seroquel. So I once again have revisions.

Current meds:
Depakote 3000 mg
Seroquel 650 mg
Lithobid 300 mg
Atarax 30 mg bedtime, 10 mg twice daily
Ativan PRN
Imipramine 50 mg
Colace 400 mg
Miralax
B vitamin complex with Vit. C and zinc
selenium
Synthroid 88 mcg MWF, 100 mcg other days

Plus dried fruit daily and of course lots of water, which is just a part of my life. I would drink lots of water even if I weren't trying because of all these meds. Who knew fruit could be a prescribed treatment?:)

Another month, another change

Due to lingering depression and Seroquel not filling the gap, I'm going back on my past antidepressant, imipramine. I'm also taking a larger dose of Colace. In 2 weeks, after the imipramine is back to its old level we'll re-evaluate.

Current med list:

• Seroquel 650 mg
• Depakote ER 3000 mg
• Imipramine 25 mg, to go up to 50 mg
• Atarax 30 mg bedtime, 10 mg during day for anxiety
• Ativan .5 mg PRN
• Synthroid 88 mcg
• Lithium 300 mg
• B complex stress version (includes Vit. C and Zinc)
• Selenium
• Colace 150 mg (may increase to 200 mg)
• Provigil ON HOLD

Yikes, that thing is long.

As always, refer to initial post for my med history.

Tongue Thrusting

In response to anonymous, who wrote "Hi, Read from your list that you have tongue thrusting from taking one of the med in 2004. How long does it take for you to recover from the tongue thrusting? would like to know as my friend is suffering tongue thrusting from a medicine side effect":



your friend needs to talk to his/her doctor soon. This needs stopped or it can be the beginning of a more permanent issue. There are several bad things that can occur. At best your friend is suffering when there are treatments that can be tried. At worst these things can progress and he/she could face some scary medical stuff. Rare, but I did see one guy with it. I believe there are meds that can help; in my case I went off the culprit because I was doing better anyway. It did go away but it took time. The worst was over pretty quickly, as I recall. But then the rest gradually went away.

I wish I could remember more specifically, but it was many meds and several years ago....

Monthly update

I'm still increasing my Seroquel dose. My doctor would like to see it level off by 600 mg/night, but is willing to go up. I'm currently at 400 mg. I need to increase that, probably tomorrow. I'm off imipramine totally.

I added OTC Xantc due to heartburn from the Seroquel and am taking a few days worth of hydrochlorothiazide, a diuretic, to try to get my legs back down to human size. They are not that big in relation to a few years ago, but they are uncomfortable. Even my arms have enough fluid in them pushing down causes a dent. This is important because as long as I'm this swollen I'm at risk for hypertension. I really don't wnat to take meds for that again.

So hopefully that's all the major stuff for a while.