Saturday, November 12, 2011

explaining the whole med thing

Ok so I feel I need to explain the reason I frequently consider discontinuing my meds. It is not because I am feeling so good now that I don't think I need them (which is a common reason that psych patients go off their meds, deteriorate, end up in crisis, and have to be re-stabalized). This is what my psychiatrist suspected was going on and I had to set him straight on that. I also don't feel weak or look down on myself for taking medication. Dood, if you need medication, you need it, be it psych, heart, allergy, pain, whatever. I don't judge myself or anybody else on that.

Ok, so here is MY deal. I have been taking psych meds since I was around fourteen years old. I have taken ALOT of psych meds. Imipramine, anafranil, prozac, paxil, zoloft, luvox, remeron, serzone, trazodone, celexa, lexapro, effexor, pristiq, cymbalta, wellbutrin, topamax, lamictal, lithium, methylphenidate (yes, Dr. Sean put me on SPEED for my depression). Thats just for depression. For anxiety I have been on risperdal, seroquel, haldol, thorazine, neurontin, buspar (worthless), clonopin, ativan, valium, and Xanax (holla!). So with all of these different meds through the years, I should have been doing great, right?

Not quite the case. Since I was 14 I have been hospitalized in a psych ward 21 times. I was committed 3 times to a long term care facility/group home for adults with mental illness. Spent like a bazillion hours in various partial/day hopsital programs and iop's. I have even had electroconvulsive therapy (shock treatments) to try to lift the depression. I have been on mental health disability for the last 11 years.

So what I am trying to say is that, despite medications, I have been struggling with depression and anxiety that has been bad enough to disrupt my life and impair my functioning.

To be fair, there are some meds that have been beneficial. But it always seems to be a mixed bag. Seroquel works great at knocking out my anxiety, especially anxious and obsessive thoughts. Unfortunately, it also knocks out other thoughts that are harmless and generally leaves me zombified, which is not really compatible with parenting, working, proccessing in therapy, or playing cardgames *ahemNERTZahem*. Oh, and the antipsychotics make me gain a crapton of weight.
Lexapro is my best antidepressant and once started, it has a dramatic effect on my mood. The problem is that my body acclamates to the dose rather quickly, so that every few months or so it needs to be increased. Eventually I will top out. I think the highest FDA approved dose is 20mgs, and I am on 30 right now (but this is common). When I lived in Salt Lake I was on 40mgs for quite awhile, and when I was in Utah Neuropsychiatric Institiute the doctor there bumped me up to 60mgs, at which point I started to twitch. So then I have to get off it for awhile before I can start on it back on a lower dose again and that is frustrating.

Ok, I need to get back to my point, because I need to go to bed here soon. The point is, I have kind of a jaded view about psych meds, not in general, but in regards to the amount of relief I can expect from them. To put it another way: what's the freaking point? What is the point of taking these meds when I continue to feel like crap on the bottom of someone's shoe? Why should I take my freakin Buspar? I have been on it for like 2 years, and in that time there has only been a handful of days that I haven't freaked out, or had a panic attack, or had one of "those days" where I couldn't leave the house, or had to take frequent "mommy time outs" to keep from dissolving into hysterical tears every time my kids hugged me. Do you get what I am saying?

Not that I am one to gamble with my mental health, but I am betting that it couldn't be any worse off of meds than it has been for the past 19 years. And I AM still hopeful that they will come out with a new med that will be great for me (which is why I scrambled for the prisiq when it first came out, but it turned out to be a snoozer).

I DO like my trazodone, since I cant sleep without it. But the flipside of that is, I think the reason I can't sleep without it is because I have taken it to sleep since I was 16 and I don't think my body knows how to sleep on its own. So there is that.

Speaking of sleep, I have to get to sleep because I have to get up at a quarter to five in the effing morning. Why the H would I do that to myself? Well some of you already know this, but I HAS A JOB! I am employed! More about that later.

Oh, and I also have to blog about a stupid med mistake I had at the beginning of the week which resulted in a rather borring 1 day hospital stay (and a new Mary Greeley Medical Center insulated mug). SO I will try to blog more because I have alot to say and alot is going on.

Anyways, thanks for listening and congrats if you made it through this huge long post. Oh, and I am always up for advice on medications, alternative treatments (except yoga) and stuff like that. Sometimes I think that people who have lived it know more about what they are talking about than the professionals


Keely said...

How about some deep breathing, a bubble bath, or diving into a good book....LOL ;)

Hmm. This is a hard one. I remember I was frustrated when UNI said my only option was ECT as they had exhausted all meds and nothing was helping. I was put on so many meds in the hospital and they would change them up so frequently I don't think they gave the new med a chance before switching to another one. I swear, my little pill cup didn't look the same 2 days in a row...Some meds can take weeks to show improvement and my meds were being shuffled every other day....Did you have adequate time to eval all the meds you took for effectiveness?

Not that I'm all for the medication, but what if you go off everything and it gets really bad... Maybe he would consider you going inpt for a bit to get off all meds and see what your baseline is. I mean, what if one med is causing or exacerbating other symptoms caused by a second med? Is he just prescribing a new med for each symptom? Is the combo not right? Meds and combinations and dosages are complex and I am no MD.

I agree with you that people put too much stock in meds. I can see the value in them- but they don't fix everything. Plus they are expensive to take if you don't have the right insurance or are on multiple meds...

In contrast to how you were in Utah, I think you have a lot more anxiety (panic attacks). I don't remember any hypochondriac problems with health, or anxiety with touch (hugs). (Other than when annie came home from hospital and you were scared you had a blood and I gave you a foot massage. :)

Maybe it is just a changed coping strategy but I think a med change (or decrease) doesn't sound unreasonable. Just take caution just in case one was really helping behind the scenes and you didn't know it until its gone. How long has it been since you were off ALL medication. How did you feel?

I can't tell you what to do (because I don't know) but I wish i could help. I love you (hug)

Keely said...

P.S- I am glad your boob is okay. I know I had insane anxiety when I had my boob problem 2 years ago. (I blogged about it...)

Also, when did the sensitivity to touch start? That, to me, sounds like a med problem. I know I had problems with sensitivity to sound. Normal conversation levels sounded like yelling and the beeping on the trax train when I doors were going to close was almost painful and I would have to stuff my fingers in my ears.

And I miss you. (hug) I am looking over your older posts and your "mannogram" idea made me laugh for like 2 straight minutes. I love your witty remarks and ideas. I'm sorry you're having such a hard time and with I could be there to chill with you.

Do you like Dr. Sean? Is he a psychiatrist or a family doctor that oversees your meds? Maybe you could go to a different doctor for a second opinion?

lisalisa said...

aww, thank you for your sweet comments!

I dont see Dr Sean for psych meds anymore. He is my family practicioner and he has an intrest in the area of psychiatry. I was referred to him bythe therapist I was first seeing when I moved to Ames because I was having a hard time finding a psychiatrist. He is super nice and takes a long time to talk to you and does his best, but eventually he had me on Pristiq, lexapro, methylphenidate, seroquel, risperdal, trazodone, and buspar, at the same time. It was just getting ridiculous and I was up and down all day and I felt like I was always takign meds. I finally got in to see a psychiatrist and he cleaned things up a bit for me (actually, the psychiatrist at Mary Greely's psych ward did when I was inpatient there 18 months ago; he took me off everything and put me on lithium). I really like the psychiatris, his name is Dr. Steenblock and he is really caring and doesn't rush you, he really takes the time to get to know you. He talked with me for a long time at my last appointment and we went over each med and discussed it and in the end I decided not to go off of any of them.

I agree that my anxiety is worse now than when I lived in Utah. For one thing, I was on Xanax like 24/7 for about the last 9 months I lived in UT. But being taken off the xanax suddenly, and then being moved to Iowa like a week later, pretty much caused me to have a nervous breakdown. That was 4 years ago, and only recently have I felt like I finally have my anxiety a bit under control. I have been reading about protracted benzodiazopine withdrawal (also called post-acute withdrawal) and I am pretty sure that is what I have been experiencing. It kind of pisses me off, because I don't think I was withdran correctly. I mean, there are ways to make it not so bad. But moving to Iowa 2 days after I was discharged, and not having set up with a psychiatrist in advance....seriously? Ok, I have forgiven Chris for that whole thing, but sometimes when I think about it I still feel mad. I mean, I was extremely unstable and in a vulnerable position, and I don't think anyone was looking out for my best intrest or making sure I got the care that I needed. When I was in the hospital, allof my meds got switched, I was withdrawing from Xanax or whatever, and we moved before we were even sure my new meds were working out and certainly didn't have any follow up appointments or anything like that.
Ok I didn't mean to go into all of this. The salient point is that yes, my anxiety got alot worse after I moved.

I am not really sure how I feel about going into the hospital to get off my meds. I kind of dont want to go into the hosp unless it is absolutely neccessary.

Telstaar said...


I can somewhat understand what you're saying. I haven't been on meds continually like you have but I have tried a bazillion meds and rarely do they work. I have a stack of prn meds but the only meds i take regularly are for my pain syndrome. Even then I try to come off them regularly. But If they're not working, why bother? Sometimes it can be hard to tell if they are working or not, if its just a bad spell when you come off them or if they really did make a difference. There are no easy answers that's for sure. But I do understand why you try to come off your medication regularly when you're not seeing fantastic results.


Keely said...

I hear ya. And i wouldn't want to go into the hospital unnecessarily either. It's just that after my whole depression episode in June, I NEVER want to go through that again-I don't think I could make it. It was the worst one I've ever had and I am so scared of ever being there again. And now that I'm better on meds, I am scared to ever stop because my baseline is okay, but when it naturally dips, it is really, really bad.

Not saying that yours is like that by any means, I just love you and would want to make sure the med change process would be as smooth as possible. :)

That is cool that your psychiatrist took the time to go over all your meds with you. Did he think maybe the sensitivity to touch was med related? Did it start after a recent med change or more out of the blue? Because isn't that relatively new? (Or I'm just behind on my reading.)

Did they just stop your xanax cold turkey or did you taper off? I would be a little pissed to if I was uprooted back to Iowa in a vulnerable state too-despite having more family/contacts there. Plus you didn't have ANY type of follow-up care scheduled... It was a bad time for you and would helped to kind of get you out of emotional crisis mode and make sure meds were good before a huge change like moving out of state.

Do you see a therapist too or just a psychiatrist? If so, is that helping? Would it be possible to try xanax (or a close relative to xanax) since it was so effective before? Even at a low dose? Are the extra anxiety related worries with health/end of the world/stimulus anxiety new? Do you think its just anxiety out of control or something different?

Keely said...

Also, why am I not on your blog list. (on the right side of your blog). he he he he

lisalisa said...

keeley if you look at the the very bottom of my blog list there is one that says "blogger, log in to read" or something like that. that is you. I started following when you were private and for some reason thats how it showed up on my blog list. I think I am a bit better with blogger now than when I first started so I will try to fix that. :)

neonorangeds said...

Wow, I feel just like you do if I was in your shoes right now. I think I lost count as to how many meds you are currently taking, but it must be awful to try to coordinate them all into your day.

I think I'd want to just stop taking them all on some days too -- but don't do that because that would be bad!!

Depending on if you are taking more than one med for the same condition, maybe it would be possible to talk with your doctor and try to discontinue one med just to see how it goes. Depending on what drugs you are taking, though, they might work through different mechanisms and all be necessary.

Regarding the benzodiazepine withdrawal that you mention -- it does sound like you weren't taken off the med properly -- generally, the dose is cut by 25% until you reach a dose that is 50% of the original. After that, it is lowered in 1/8 increments... it usually takes more than a month to get off of something like that. If you did go through the withdrawal, like it sounds you may have, that should have gradually gone away within several months of when you discontinued the drug -- sometimes the withdrawal lasts days or weeks, but if you were on the drug long-term it could last months.

The good news, I guess, is that you probably have a better doctor now :) Have you asked him about the withdrawal?

Anyway... reading this post made me realize I need to go learn more about drugs :) But I hope that your week has been off to a good start and I'm sooo happy that you were able to find a job -- it sounds like you like your too, so even better :)


neonorangeds said...

haha, my post is covered in typos... sorry!

I meant to say: it sounds like you like your job* too, so even better :)

Erin said...

See, here's what I think, since you asked.

Maybe it feels like the medicine isn't helping, but have you ever gone without medication? I have gotten in those "my meds aren't doing anything" rut and gone off of stuff only to have things become disastrous. Rather quickly, too. So I don't know -- maybe they're help keeping you from the complete crazies? Sometimes the only way to know is to go off of them, but I would warn you that it's not often a good idea.

Love you, bitch tits!

Erin said...

Ever try Abilify? I didn't see that on your list. Adding it to an antidepressant can work wonders. Although a lot of people don't like it... I have had no problems with it.

lisalisa said...

yeah, three I havent tried are abilify, geodon, and invega. I am just trying to avoid that whole class of meds though, after all the weight gain I had on seroquel and risperdal.

Erin said...

I am not familiar with Invega but Abilify and Geodon are "low risk" for weight gain whereas the others you've tried are moderate to high.

dietcokefiend said...

hey, my new blog is linked here... locked up my old one afraid ppl will find it. take care lisa - xoxo tia

Angela E. Gambrel said...

I wonder if you are on too many meds, and the interactions betweeen them is what is causing the problem. It also seems like most of these meds are not helping you. Perhaps you should think about going into the hospital and going off all meds, as it seems like your body has not been med-free for decades.

Having said that, I take three low-dosages of psychiatric meds, including Seroquel and that was a lifesaver in terms of anxiety and leveling my moods. I just feel more like me, and I didn't experience the weight gain many people complain about with Seroquel - in fact, I've been able to lose weight while taking it. But I have weird reactions to meds, and usually the opposite from everybody else. I became manic on Depakote and gained weight on Prozac. I can't take any of the other SSRIs because they either make me hypomanic or cause severe physical reactions. So the low dose of Seroquel (250 mg total, divided up during the day and night), combined with 1 mg of Ativan three times a day and 10 mg of Valium at night to sleep has worked the best, and I don't feel weird or anything. However, my dream is to be med-free and I was for about six months. I just need to wait until my life is a little calmer.

I have had sensitivities like that, but not as extreme as you are describing. I find they get worse when I am anxious and stressed. I always thought it was just me being weird!!! I'm working on trying some non-drug things, like listening to certain kinds of music and yoga, to help.

Btw, I had the same issue with Xanax. My former psychiatrist didn't know how to do anything but write me scripts for Xanax, and even at my lowest weight (before he got a clue that I had anorexia), I was taking 2 to 4 mg tabs four times a day! And this went on for six years. It was extremely hard to get off of, and because of my experience, my current ED psychiatrist will not prescribe Xanax to me (he was the one left to deal with tapering me off of it, and it took a couple of months. It was like I was addicted to the stuff; maybe I was.)

I hope you get this all figure out. You are such a great person, and are so much fun and very interesting to get to know. I want the best for you. This is only my opinion, but I still think going into the hospital, slowly taking you off all the drugs, and then perhaps when you have experienced some time drug-free, the doctor could prescribe just one medication that he thinks could help. I hate to see you going through all this.


lisalisa said...

thank you all for your support!

I hope everyone got that I an NOT on all the meds I listed at the moment. Those are just meds I have tried in the past. Oh, and I forgot to pu remeron on the ist. I'm sure there are others I forgot :P

ANyways, right now I just take Lexapro, wellbutrin, buspar, and trazodone for sleep.

P.S. Angela, how do you stay awake durring the day !?!?


Erin said...

Buspar...that crap does nothing!!!

Keely said...

I was on 300mg seroquel (not to be like "I'm crazier than you! ha1 because I was on a higher dose.) Remember lisa? Dr. Ellis prescribed it and I would fall asleep during groups, study hall, sleep through nia/yoga in the morning, slept through allyson's good bye group...I don't need a sedative Dr. Ellis. Sheesh. :) I don't know how you could stay awake Angela. :)

lisalisa said...

keeley- yes I remember! Didn't you sometimes skip groups completely because you were sleeping in your room?
I was on seroquel when I was at CFC. I swear they put everyone on it! I think if we were all sedated it made ther job easier. Maybe that's why the patients in the CFC DVD are all calm and smiling and peaceful! I had to be taken off of it, though, because I wasn't able to really proccess anything in therapy. I was pretty zombified.

Erin: buspar IS crap! Usually I forget my afternoon dose, cuz it doesnt even make a difference. I think they could do alot better in the non-addictive anxiety med dept!

Keely said...

Yes, I slept through AM nia or yoga or weights. I didn't care-I hate exercise and I am not a morning person. Karolee (my roommate) was flabbergasted when she came back and saw me asleep. She woke me up and was like "They let you sleep through nia?" ha ha ha! They just didn't check the rooms and thought everyone was up and adam. he he

I was so zombified too. Glad I'm off it...

lisalisa said...

thats right! It used to piss me off, too! I was like "how come SHE doesnt have to lift weights at 6:00 in the effing morning!!!!!!!

fun times ;)

Angela E. Gambrel said...

How do I stay awake during the day? With my eyes open, lol!

Seriously, the Ativan is not that strong and if fact, I am thinking about talking to my doctor and tapering it off. It does not have the same effect Xanax did, that is for sure. And the Seroquel is spread out over four times a day - 50 mg morning, noon, and evening, and 50 at night with the Valium to sleep. All of this is temporary and as soon as things feel more stable, i.e. a certain person who was causing me to be totally stressed out becomes less and less a part of my life, we plan to taper me off all of these drugs, probably by springtime at the latest. My doctor doesn't believe I need medication for life, and I hope he is right. We just don't want to mess with it right now because I'm still dealing with things and I am trying to finish graduate school.

Wow, drugs are a popular subject...this will be your 22nd comment on this post, lol!

Hope you are doing well and everyone is healthy! It seems like everybody I know is sick; I'm getting over strep right now!


JM said...

Hi Lisa! I haven't commented or been around in awhile and I don't know how to email you now. I would like to email you so can you put your email on here or send me a message at my work email and I will give you my personal email. thanks!

Nobody Girl said...

i do think that a break can be good. sometimes you never know what your baseline is, because youve been on 4271788 meds for 361648 years. i can relate. i think if youre working closely w/ your therapist or something, it could be worth trying out. good luck!

ps. buspar, i agree, is totally useless.

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