Wednesday, September 14, 2011

To Med or not To Med

That's the question. The rub is- what is the correct answer?

Dave Stein in his blog posted that question yesterday. I've been thinking about this long and hard, and I've come up with the conclusion.

It depends on the individual. But this individual says no.

See, I'm not a doctor, I'm not trained in pharmacology. All I can tell you is I've taken almost 40 different psychiatric drugs in my lifetime. None of them worked - some did what they were supposed to and pooped out after about 3 months or so. Some of them gave me bad side effects after a couple of days. Some of them made me exorcist sick. A few gave me side effects like weight gain (up to 100 pounds) made my hair fall out, gave me stomach problems and GERD. These side effects were nothing compared to kidney failure, and nearly dying from tardive dyskinesia from Haldol. ECT made me loose my photographic memory- made me loose most of my memories and I lost my career because of it.

I will admit- the first year or two- the drug cocktail I was on made me feel better. Or maybe it didn't, but acted like a placebo to my brain. The doses got stronger and all of a sudden it just wasn't one drug I was on (lithium) but the doc said, add Prozac. I didn't tolerate Prozac that lead to six months on Zoloft and then a change to Paxil after another six months. Then all the other medications were tried with the lithium. After six years with one doctor, I got a new one- who changed out the lithium for Depakote. That's when the weight issues came in. I went from 105 pounds to over 200. Depakote was stopped, back to lithium. And so and on so on. And my weight over the years cycled from a low at 140 (which was 30-35 pounds overweight) to at one time a whopping 210 at my heaviest. (To give you an idea, I am five feet and one sixteenth of an inch tall, and should weigh between 100-110 lbs).

Every time i would complain about a side effect, doctors gave me pills for the side effects. Stomach issues- I was told to take Maalox or Pepto. I got to carrying around Maalox tablets with me at all times. I couldn't sleep, I was given something to make me sleep. I couldn't wake up, I was given a pill for that. I was given Meredia for diet pills. My hair fell out on three different occasions- I was given slips to buy wigs and scripts for Rogaine. I became anemic- I had to take iron pills. Then my white blood count started going haywire, until it's been hovering right at a number just below the number for leukemia. I started to hear voices, I was given a pill for that. I've been up to 11 different meds at one time- not all psychiatric.

And let's put this on the table, before I was "diagnosed" the only health issues i had  besides the normal childhood illnesses, were painful menstrual cramps.

Today I am currently on Clonidine, Amlodipine, Bethanechol, Colace, Lasix. I take Tramadol for pain. I'm not on any psych drugs, much to my mother's chagrin, because of the kidney failure. I suffer from agoraphobia- brought on from the drugs I suspect. I've never had that. I have edema in my legs and feet, and cannot walk without a walker.  I totally cannot think for myself, I have to make lists of everything to do. I have a little bit of my memory back, it took over 8 years after the ECT to get any of it back. I cannot tolerate heat, my apartment stays at 62 year round. Any higher and I get sick from heat. In the winter I would keep the thermostat lower but my landlord says I have to keep it at 62 or the pipes will freeze. My ideal climate would be in the North Pole in an ice house, year round.

I know on the internet, for every one person that is pro meds, there is another that is anti meds. Like I said, I am not a physician. What I will say, as I look at my life, I rue the day I ever took my first psychiatric pill.  In hindsight, I would have been sufficed best by talk therapy.

What I wish is that the doctors I saw had listened to me when I complained about side effects to my medication. I wish they knew about weaning off one drug before starting another. Instead they told me to go off cold turkey from one med, try another, and were never with me when I was adjusting  to one while going off another. I learned to live in the bathroom for days- never knowing if I had to put which end on the toilet. I had shakes worse than the shakes I got from drinking.

If you are taking any meds, and have side effects call your doctor immediately. Don't let them marginalize any side effects. Any and all side effects should be brought up. Don't let a doctor condescend to you. Look up your prescriptions on the internet. Read all you can and talk to your doctor about the drug(s) he or she wants to put you on. Question everything.

I'm taking the high road here. I cannot tell you to med or not to med. All I can do is tell you, in hindsight, they didn't work for me, they made me sick and gave me side effects that were horrible. I wouldn't do it again. But if you are reading this and feel the meds are saving your life, good. But please, please, the minute they start making you feel wonky and sick, call the doc immediately. If your doctor doesn't listen to you, get another doctor. Your life is important, and loosing your life from meds or from their side effects stinks. Arming yourself with knowledge can and will save your life.

And in the end, that's all you have. Your life and your health. When your health is gone, so is your life. Take that tip from me. I celebrated my birthday last week, my biggest fear is I won't celebrate next year's one.


Sharon Pernes said...

I like this post, mostly because you are just giving your opinion. I like that you are telling people to see a doctor when things start to change. Here's mymstory and feeling...
I was diagnosed 5 years ago. Imspent 1 week in house to get on my first cocktail of meds since doing it slowly was making me sleep a lot. Then I atteded an IOP program for 3 weeks. All was fine till about 2 years later when the doc I was seeing said I could take klonipin like water...whenever I had the slightest anxiety. That's when the meds stopped working. 3 one week in house stays later I was lucky enough to find a new doctor who got me on the latest cocktail. A few weeks ago I noticed I was getting depressed again and immediately went to the doc. She increase 1 of my meds and we scheduled a 3 week follow up. The education I got helped me and my family realize what was happening before it it out of hand. I am less depressed now, but I still need a little tweaking I think.
My reason for writing this is to tell people that if they are diligent and educate themselves things might be much smoother. I am still pretty new in this mental health world, but I do know i was always told never to go cold turkey when getting off of any meds. It makes me sad that doctors would be so irresponsible about this. So educating ourselves is the best thing to do. We have to be our own best advocate. I think that's the best way to start.

susan said...

Hi Sharon,

It's like i said, I am not qualified to say yes or no. Everyone reacts differently to each drug. What drugs gave me problems I know didn't give other people I've met on line.

When I started this blog, almost 4 years ago, I called lithium my wonder drug. I was on it for approx 24 years give or take a month or so. When I first started blogging, I was on a dose of 1800 mg a day. Then my body wasn't reacting to that "low" a dose- by Summer of 2008 I was up to 3100 mg. I think that all those years of lithium caused my kidney failure.

When I was diagnosed- in May 1987, they were using the DSM III and it was called "manic depression" My computer classes involved Cobol and Fortran- there was no information on the drugs available like it is today. And I believed the docs knew what they were doing because I had 3 Psych courses undergrad and 6 graduate.

I do have a shrink now who supports me that I don't want to be on drugs. I'm lucky. I just don't want people to wind up with the health problems I have currently and I wish I knew then what I know now. Maybe things would have been different.

I am glad you liked the piece. Thank you

Astral Samurai said...

Ahh the old med train, CHOO! CHOO! Here we go!

Back in the day when it all started I would always spit them out. Eventually my resistance was crushed by Haledol & Risperadol injections. Weight gain was only the beginning!

Granted I stayed out for two years but the fact that I was still on meds and they decided I needed to go in just shows that pharmacology is inconsistent with reality.

I had a chance to look through all the paper work over the years. It always says the same thing, "Inappropriate conversation, inappropriate response, random laughter." Hmm now does this sound to you like someone who is psychotic or is a comedian?

Seeing what the problem was I realized it wasn't exactly me per se. They really didn't give a flying fuck about what I was feeling but what I had to say. Now if I'm not mistaken there's a few lines in the constitution about freedom of speech!

Ever since then I have faked the whole the meds are working bit. Its sad that I have to do that because they think that is what is keeping me out. The fact is I do not voice my opinion anymore unless asked.

I do take the meds though and since I started Clozaril in November of last year I went from 155 to 200 today. Not to mention I'm sent every two weeks for a blood test. My sleep cycles are always off, I'm either sleeping too much or too little.

Part of it is acceptance, I'm not getting what I want but at least for the time I can keep them off my back.

I'm sure there is a cliche I can use here but ill leave it at that.

susan said...

Hi Astral,

You raised a few good points. I was able to get some of my psych records and I have my Axis evaluations. I am debating if I want to post them. As for Clozeril, my psychiatrist before this one wanted to put me on it. She had submitted the paperwork to the state when she put me in the hospital for three months with Haldol poisoning. I guess I lucked out.

Acceptance is good too. I need to address that here as well. I hope things are going better for you, you've had it real bad, you've really seen hell. That you are alive and out is a testament to your strength

Astral Samurai said...

Hey Susan,

Thanks for your consolation we have both been through hell but we better keep on going!

I was very close to winding up in a state facility, the Clozaril was a last resort.

I kept my mouth shut when the judge arrived and just yes'd them to death.

I honestly do not think we would be talking right now had I chosen the path of resistance.

It is unfortunate that there are very few heroes in psychiatry.

Anyway stay safe Susan,

-Astral Samurai

midnight rainbow said...

I was considered schizophrenic when I was first hospitalized. At first I spit out the meds, then became grateful because I was so paranoid I was out of mind. Later I was given the label bi-polar. I have been slowly weaning myself for the last three years. I am off all anti-depressants, and working my way off the anti-psychotic. Lithium will be last.

I have always tried to be on the least amount of meds possible, but
I don't think I would have made it without them. I'm finally at a place in my life where I am comfortable to get off of them.

Your story sounds horribly painful and scary and I am so sorry that you had such an awful experience. I agree with you, it is an individual choice and now a days there is so much info that we can make better choices than we used to be able to.

Hope you feel better soon and I Wish you well.

susan said...

Hi Midnight Rainbow,

I think you understand. I am glad you are weaning off the drugs and doing it the correct way. Just make sure with the lithium to keep getting your blood levels tested every few weeks. Some of the docs i had were dilligent with this, some were not, and I had to remind them.

It is an individual choice and I am grateful that more info is out there on the drugs than it was back in 87 when I was first diagnosed.

Thank you so much for the kind comments. I wish you luck too. You are a sweetie.

SMH said...

Hi I just found your blog through commenting on David Stein's blog, interesting post about meds. It's something I am blogging about, my excrutiatingly slow withdrawal from SSRI's after 10+ years of suffering side effects and finding myself unable to get off. I am all for a balanced view on this subject, meds have their place, and I have benefited from them, but then the side effects were affecting my quality of life hugely but doctors just try switching from one med to another to see if you can lose the side effects, they just don't seem to know how to safely wean people off them.

susan said...

Hi SMH- I agree with you 100% . A good blog to check out on the topic of weaning off meds is "Beyond Meds"= it's on my blogroll. The author of that blog has been spending years weaning herself off her med cocktail.

I agree that if we are not talking about forced drugging-that taking any of these psych drugs should be made knowing the pros and cons - just like you would do if you were buying a car. Every side effect should be noted to your doc, and you should have a good rapport with your doc. Physicians should be taught in school how to listen to their patients and not to dismiss their complaints on any drugs- not just the psych ones. I think too often physicians- the ones I have met, think because of all their education they know best and we don't. They really should teach hubris at university- then we wouldn't get so sick and suffer so much when the medicine that they think will heal us goes south.

Adriana said...

my goodness!!!

And I complain about how depressed I feel tappering zoloft... don't know what is coming next, but I am afraid now :(

susan said...

Audrina, Don't be afraid. There are a lot of kind folks who have been there and care.

Good luck with your taper - and please keep the doctor in the loop to any or every symptom you are feeling as you taper.

Wendy - Caleb's mom said...

Today is 14 days post-ativan for sleep! And dang, I can sleep! A few days of vertigo, crazy "med" headache, two nights of absolutely NO sleep - but here I am. Cured of ever taking something for sleep ever again! My shrink said "You will have to go to the hospital to get off this stuff". The only thing I got in the hospital was more meds, not less. Took me almost 16 months to the day to get off 4 tabs a day of ativan. Why I took it in the first place I have no idea. I am highly addicted to Xanax. Can't even safely read the word...
I feel so much better. Now on to getting off the cymbalta and adderall. I found something much better. Dialetic Therapy.

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