Saturday, November 14, 2009

When Medicine Makes You Worse Not Better

The past year has been both one of the most amazing and hardest years of my life. And I realized when I talked to my doctor last week that I have been getting worse not better with all the meds.

I reached a high point of 5 different medicines. Three I take everyday and 2 as needed. This is the most I've been on since I came out of psychosis 6 years ago.

We decided together that we need to re-evaluate. So I am getting off Abilify and Zoloft. Amazingly enough being on Lamictal, Abilify and Zoloft has made me MORE depressed not less.

In the two weeks since we started reducing my dose ... I feel amazing. Like the old Rachael.

Anyone else have a situation when you got worse not better on meds?

21 comments:

Anonymous said...

My goodness, yes! I had a horrible doctor when I was diagnosed at 13. By the time he was done with me, I was on high doses of 8 medications (meds to treat side effects from other meds), totally psychotic, and on the verge of a seizure. I had to be hospitalized for 2 months and then in treatment for another 9.

Adolescents with bipolar aren't supposed to be on antidepressants and apparently this doctor (who was supposed to be one of the best... he even appeared on the Today Show), was unaware of this, even though my mother told him.

Abilify (briefly one of the ingredients of the drug cocktail) was the worst of all!

So glad things are getting better!

Jessica said...

I am currently pregnant and bipolar like you and I was doing worse on my meds as well while pregnant. well in the begining I was so I stopped taking them and felt great for about a month then I crashed. I havent gotten back on any yet but I plan to as soon as insurance comes through. I think while we are pregnant with or without meds its goin to be tough especially for ppl like us who are already emotional.

kutoa ndoto said...

I have not yet begun medication for BAD, and I have to admit, this is one of my biggest fears. I hope things calm down for you soon.

Jane said...

I remember being on three different meds at once, and because of them I was like a zombie, which for me was worse. It felt like sleepwalking through life. Definitely talk to your doctor - it could be one particular med or the combination that is making things worse.

~ Jane

Georgia said...

I had the same problem as Jane when I was first figuring out my med combination. My doctor put my on a high dose of Abilify and it made me into a zombie. I basically felt like i was living in a cloud and had lost everything that made me me. It was horrible.

Samantha said...

Abilify did nothing for me too, made my anger worse, to the dismay of my husband. Also, Trilofon made me spiral deeper into mania. It made me restless and unlike myself, horrible in a nutshell. Any depression med makes me lose sleep and lose track of time. I am so lucky I only need 2 meds!

Anonymous said...

I am a bipolar mom. I have a 3 & 4 yr old. I found out I was bipolar about 7 yrs ago when I was 20. It has been very hard, but it is so worth it. My kids are great. I have a great doctor and even though I am on 3 meds with one more I take as needed, I am the most happy I have been in my whole life. Last yr I had a very bad pyscotic episode I was in the hospital for 4 days. We changed my meds and I am doing great. It just takes the meds a while to work.

she-gibby said...

Yes! Like you, Abilify made things MUCH worse! I took it for 3 months before finally talking to my doctor, who then put me on Lamictal and Seroquel (sp?). I'm 20 weeks along right now and not taking any medication, but things seem to be "so far so good." Hopefully you'll find a good balance soon!

Jamie Rae said...

I was on depakote for a while and asked the dr to swith me to something that didn't let me gain so much weight. Depakote worked and let me think clear but I was miserable with the side effects mosty b/c I was gaining weight and it made me depressed. Now I am on abilify and it works great.

thaiguy84 said...

Yes, Abilify made me feel worse. I'm glad you have this blog since my friend is going through her first month of pregnancy along with her first year of being diagnosed with bipolar disorder. Thanks.

Anonymous said...

I want to quote your post in my blog. It can?
And you et an account on Twitter?

Anonymous said...

I am 8 weeks pregnant and bipolar. If you are still looking for guest writers, I would love to be one. I have been diagnosed for 3 years, married for 3 1/2, and currently teach middle school. How can I contact you directly?

Rachael said...

I am still looking for guest blogger -- I can be reached at bipolarpregnancy at gmail dot com

Anonymous said...

Hi there,

I am 4 months into my fourth pregnancy and I know that the best option (not for myself you understand) is to go cold turkey from medication for bi- polar disorder; I would not advise this for anyone else to come off medication!!!!....but I made the choice purely for the health of the baby, I found it very hard going if I'm honest. But I made my doctor and family aware and I was monitored by my local health authority too. But as it turns out, I have only just found out that since the age of twenty ( and now I'm 38) I have been palmed off by all my doctors in the past with the wrong types of meds. Zoloft, Prozac, lopremine all being anti depressants which are not useful at all!!! As I have been told mood stabilisers are what I should have been given, so after this baby has been born and weened from me I am looking forward to getting the right medical treatment and becoming as normal a person as is possible. I would also like to say how petty that person was to be bothered about yr grammer!!!!! And having a high iq does not mean you become Einstein of the English written language!! I do hope you put that person in the right place lol!!!! Silly sod ;))))....

Rachael said...

Thank you to everyone who has chimed in on this topic. In the end I after two weeks of reducing my dose of Abilify, I quit cold turkey Zoloft. I really do not recommend this approach as it was quite hard and semi-traumatic to my mental state especially since I did it just before Thanksgiving. It took weeks for my body to feel back to normal physically. That being said I'm glad I did it -- I feel like a fog has lifted and like my brain is functioning at 100% again. It's a great feeling.

Alexandra said...

First of all, I am so glad I found this blog. I am 22 years old, and I was diagnosed a little over a year wiht Bipolar. For four years before being diagnosed, I was on several different medications and dosages for depression. With the medication I am on, I am doing better, but I am still a little confused about how I am on them. I am having to take a break from school because I cannot handle anything over about two months. Has this happened to anybody else? Is there a reason for this slip to always happen? Thank you all.

she-gibby said...

Alexandra, while it's different for each person, sometimes it's a matter of getting adjusted to right medication(s) and discovering how Bipolar impacts you. I was in seminary (age 25) when I was diagnosed and it had a significant impact on my studies. The side effects from the medications were something all on their own, but then the lifestyle changes that I had to make to successfully manage the disorder were something entirely different. It was important to learn to manage stress and to recognize triggers and indications that I was (am) cycling. It takes time. Whatever you do, don't give up. It doesn't have to be something to runs your life; remember you aren't bipolar; you HAVE bipolar.

Anonymous said...

I am pregant in my 1st trimester with my 3rd child. I've been diagnosed with bi-polar 9yrs ago and have been stable on lithium since then. My doctors warned me about how horrible lithium is for my body (causes kidney & liver disease,etc) so i decided to wean myself off. I should have been under the doctors supervision but foolishly decided to do it on my own. My regular dosage was 300mg 2x a day and I'm down to 1 pill a day. I'm really struggling.I have everything to be joyful about but I feel so blah and borderline depressed. On top of weaning and all the hormonal moods that comes with pregnancy I'm not sure what to do..my gut says to just go back on the lithium. I stayed on lithium with my previous pregnancy and my children, thank God, are fine. Does anyone have any suggestions? Safer, less risk meds, I'd even consider all natural. I just dont feel like going off my meds is going to help me out in my family life. I have a husband and 2 kids (another on the way) that need me stable and whole.

lithium and pregnancy said...

that last anonymous post --- lithium is currently one of the better meds for pregnant women. i'm in my 2nd trimester & have been researching a lot. if you monitor your blood levels you should be fine. find a better doctor (better yet, find a Nurse Practitioner in Psychaitry! these highly trained professionals usually cost less, have lower co-pays, and take more time to talk with you.).

Anonymous said...

medicine making you worse is toooootally common. the hardest is when docs try to load you up with too many at once. i've been managing my Bipolar I condition with medications for 12 or 13 years now. i'm very sensitive to meds. here's what i have learned, and i hope it helps you:

1) CHARTING
keep a chart. get in the habit of writing in it every night before you go to bed. include SLEEP, mood ratings, vitamins, exercise, medications, bipolar symptoms, travel, weight, stuff like that. if you can devise a good chart that a whole month will fit on one page, do it that way. some people chart food, too. this chart will help you make sense of *long term changes* that are happening. however smart you think you are, chances are that you're missing some trends because hey, you're human and you live inside your own mind and body. charting helps get the info out of your own mind and body, into a form where your brain can step back and analyse it.

2) ONE MED AT A TIME
if you are bipolar and a doctor offers you an antidepressant first? your doctor doesn't know wtf she's talking about. go to someone else. i'm dead serious.

always start with a mood stabilizer, if you're doing OKish. nowadays they can usually start you with a newer generation antipsychotic, if you're not doing OKish and need to be peeled off the ceiling.

so: A) get unpsychotic if necessary. antipsychotics like Seroquel work immediately. i hate them, myself, but they sure do the job.

B) resign yourself to some long, hard work finding the right mood stabilizer and the right dosage. Lithium, Depakote, and Lamictal seem to be the most popular. your doc might have you on low doses of an antipsychotic as a prophylactic, instead of lithium-etcetera. if you can manage this phase on one medication alone, the mood stabilizer, try to do it. it is SO hard to track meds when you're trying new stuff all at once. commit to your Wellbeing (see below) while doing this phase; that will help you get through it. if too chaotic or depressed during this phase to cope, go ahead and try antidepressants simultaneously, but sheesh, good luck with that.

also, you may be able to introduce sleep aids while you are working with the mood stabilizer. do so with care, and chart every mood and move. Seroquel, lithium, and depakote (valproic acid/valproate) are usually downers for most people; try taking them at night, or if you have a divided dose, take the larger amount at night, smaller amount in the morning. without proper sleep, it is virtually impossible to stop a bipolar tweakout.

C) ANTIDEPRESSANTS. after you're stable, you may still be kind of depressed. your chart will help you figure out when and why. feeling stable, fairly comfortable with your new mood stabilizer and its side effects, THEN start experimenting with antidepressants. do NOT discontinue your mood stabilizer! and again: chart. i am only able to use Wellbutrin, in the antidepressant category, and it will usually work for 6-18 months before i start getting a minor manic episode. then i have to stop Wellbutrin for a year and tough it out.

D) SLEEP MEDICATIONS. this is what finally saved my life. i actually had to increase sleep meds in order to tolerate Lamictal, which is my favorite mood stabilizer but which makes it even harder for me to sleep. i take a tiny amount of a benzodiazapene (Klonopin, clonazepam) at night, and a regular .5 mg dose of Ambien.

Anonymous said...

E) WELL BEING
meds are just some basic building blocks. to make your life into a gorgeous palace, you need to make behavioral changes. i think it's especially important to work on this early on, while you're trying to adapt to new mood stabilizers. go slow, but be committed.

- cut down on booze, any alcohol. way down. the sugar content messes with your glucose throughout daily life. it synergizes with most medications, which makes it harder to tell how and whether the meds are working. and, duh, it's a depressant.

- cut down caffeine. there are fantastic decaffeinated coffees available now - such as Stumptown and Peet's is pretty good - you can start off cutting down to 1/2 caff, 1/2 decaf. not as problematic as alcohol, but it can contribute to sleep problems and the upcreep of a manic episode.

- exercise! this is a huge one. just freakin' do it. start slowly if you need to. get in the habit of taking walks. aerobic exercise does magic for the bipolar brain.

- stress relief. these methods work differently for bipolars, in my experience/opinion, and that can make it difficult to pick one out that works. but at least try: massage or shiatsu... PLUS yoga, meditation, tai chi, and/or Qi Gong. start slow, baby steps, i'm terrible at this stuff. it's taken me years to slowly fold it into my life. it helps A LOT.

- talk therapy. yep, they gave you drugs, but that's just a drop in the bucket. if you can afford it, see a talk therapist (call your county health clinic - you may be able to see an LCSW for free) to help you navigate the New You, because with every new kind of meds, we are sort of newish people. then once you're stable and comfortable on the new meds, the therapist can help you deal with the many problems that will not be solved by the meds.

OTHER HEALTH STUFF
change doctors if you need to. get outside advice when relevant. make sure you test for things beyond Bipolar Disorder that could be causing problems, adding to depression, or mimicking drug side effects - for example, have your thyroid checked, your vitamin D levels checked if you live in a dark cloudy climate, etc. half of my "depression" one year turned out to be a low thyroid. the other half was depakote symptoms. a new doc (Nurse Practitioner) helped me sort it all out and eventually move off of the Depakote.

PREGNANCY
i hope this is helpful to some poor Beeper wandering the Internet ether. pregnancy wise, the data are scary, most docs and research disagree with each other and/or hardly say much at all. many meds haven't been adequately tested. but what comes up over and over is this: it is DANGEROUS for the mom to become depressed or manic, dangerous and much more likely, statistically, than the foetus having a birth defect from taking the drugs --- here i refer only to the drugs that are considered "sorta-OK", like controlled Lithium and, from preliminary results, Lamictal. depakote carries high risk for the baby - move off of depakote before you even get pregnant - switch to Lamictal or Lithium.

recently, Ambien / Zolpidem was studied again, and given the thumbs up for pregnancy and breastfeeding, if used in moderation. of course we don't want to give more meds to our kids, but if the sleep disturbances of pregnancy are messing with your sleep and that is in turn bringing on an episode? it is WELL worth it to make sure you get the sleep.

we have to show our children that we can take care of ourselves, to give them a good example, encourage them to grow up and take good care of their own bodies and minds. sometimes this involves taking a medication that has a risk attached.

this is not a formal medical opinion, just some experience that a bipolar woman has had in herlife...