Sunday, October 28, 2007

Is It Worth It?

In a number of posts lately, commenters have been talking about a trade-off: is the potential to get better worth the risk of possible side effects? And if the treatment actually does effect improvement, is that improvement worth it when side effects do happen. As our commenters have pointed out, that's often something that only the patient can decide....though we psychiatrists will add that in certain conditions (mania, disorders with a delusional component, disorders where violence is a symptom) that insight can be impaired and sometimes it's good if the patient gets a little input from others. Mostly, though, especially when the issue is one of subjective distress, the patient is uniquely able to make the "Is It Worth It?" determination.

Okay, so Judith Warner has a neat post on the New York Times Domestic Disturbances blog where she talks about The Migraine Diet, food, meds, and
lifestyle issues pertaining to the treatment of her migraines. She talks about the recommendations of David Bucholz, the Hopkins migraine Guru (and my neighbor...) -- avoidance of medications that can lead to rebound headaches and a diet devoid (--I'm kidding of course, but apparently caffeine, pizza, beer, and chocolate--the foods Shrink Rappers love-- are out). Ms. Warner writes:

Some people do manage, through diet and exercise, or by protecting themselves from their worst “triggers,” to free themselves from their drugs. But many can’t do it. Many find they can’t accept living in the compromised condition that drug-free existence requires.

A smart high school girl I know switched a few years ago from a mainstream school, where she was struggling with dyslexia and ADHD, to a school that specializes in teaching kids with severe learning disabilities. Being there has permitted her to function without her ADHD meds. But now she’s bored. She’s dispirited by the lack of academic challenge and she wants out, because she’s afraid that, without academic challenges, she won’t be able to get into a mainstream college.

That’s the tradeoff: taking daily drugs, or living a life that feels not quite worth living.

The story ends with a prescription for Topamax and a snickers bar, result pending.


If you haven't been following Foo Foo's blog, Turn Your Head and Scoff, by all means, visit. He tells a moving story about a young woman's death from colon cancer-- I started to comment, but just didn't know what to say. He tells about life in San Diego with the fires burning, and of course, there are those lovely pics he posts of the interior of his own GI tract.


I think the Red Sox will clinch it tonight.


Gerbil said...

It's an interesting question--and I think the provider can be put in quite a bind when the patient decides that the treatment isn't worth it.

I hated Zyprexa when I was on it, but I decided that the weight gain, the sedation, the tremors, and the memory impairment were better than the psychosis. I'm still a little angry that I don't remember too much of my college years, but it's much, much better than not being around anymore. And I know too that it was the best treatment available at the time.

On the other hand, I would rather live with some breakthrough allergy and asthma symptoms than take steroids every day. I'll take a steroid for two weeks if I have bronchitis, but honestly, daily maintenance treatment is not an option for me. A clear respiratory system is not worth the emotional lability, increased appetite, skin problems, fluid retention, and so on--it's like chronic PMS.

And so I have lots of discussions with my allergist (i.e., at every appointment!) in which I explain that I know the potential benefits, but the drawbacks are just too great. Of course, it's her job to help me be symptom-free, but from my perspective, that kind of freedom is not worth it.

Aqua said...

I know for me I would put up with pretty much any side effect if I could find a medication that actually helped my depression.

The two side effects I cannot deal with are:
1) EXTREME sedation (only the kind where I sleep/can't move 20 of 24 hours)...what's the point depression does that to me too.

2) Increased anxiety...I already have so much anxiety it is intensely crippling.

These two side effects make me MORE depressed.

I am willing to put up with some sedation, and some anxiety...but not the "life's not worth living this way" variety.

Am I out of luck?

Anonymous said...

He he, yes, this is definitely me. I'm very fortunate to have doctors who are very patient. I will tolerate a fair amount as side effects go. My hair is falling out, my eye sight is worsening, I can't eat without getting sick, my memory and concentration stink, I have aphasia, I get throat and chest tightness, severe nausea, tiredness, etc, etc, etc. And all for meds that aren't really working that well in the first place. I will try to avoid potential liver damage, diabetes, increased triglycerides, and massive weight gain as long as possible.

If it comes down to it though, I've agreed with my doctor that I'll try 'the big guns'. In return, he's agreed he'll try all the less risky meds first. I saw my neurologist a week ago and told him I'm ready to try Depakote now (after fighting it for a year), but he let me know that he's not done trying to keep up his end of the bargain and still has a few tricks up his sleeve. He knows I'm very concerned over the potential weight gain (I've worked very hard to lose 40lbs). That's why I love my doctor.

I read the Judith Warner article yesterday. I've been doing the "Migraine Diet" for about 3 months now, a much more strict version of the diet than Warner's, but with minimal results. I limit my abortive use (Imitrex STATdose 6mg) to 2x's per week, and am looking for the elusive holy grail of preventatives. Strict diet does help a little to prevent the worst of the ambush attacks but doesn't do much for the constant chronic migraine. I use mediation and self-hypnosis to control pain as well. Will all my behavior modifications ever free me from drugs? NO. And it's certainly not from lack of trying. After the last 4 weeks of increasing pain and finally needing another IV infusion of DHE to get a little relief (right on the heels of a 3 inpatient hospital stay), I just get so frustrated. If only my life were that easy...

NeoNurseChic said...

Well-said. I'm at a dilemma right now on side effects vs. benefit, and I plan to discuss it with my psychiatrist tomorrow. 2 Saturdays ago, I started taking buspar at 5mg BID, and then increased to 10mg BID on.....some day last week. Pretty much the 3rd day or whatever - he had me increase it when I said, "Does this take a long time to work?" Made sense to me since when I looked up the med, nobody was starting it as low as 5mg twice a day.

So like I said, I've been taking it for about 8 days now. On Friday morning, I went to work, and was insanely dizzy and then threw up at work. (Vomiting - I believe I've mentioned that this side effect is a problem for me...) I was so dizzy that I thought I was going to pass out, and I had eaten breakfast. So I figured it was the verapamil...since I had switched pill types. Yesterday morning, I figured I'd skip the verap and take it at lunch instead. I got really really dizzy and nauseous again, but didn't throw up. Figured then it was the buspar, but it isn't happening to me at night, although I take my meds just minutes before I lie down and go to sleep, so maybe I'm sleeping through that side effect. This morning, again the dizziness, flushed feeling and more nausea - ran back to the bathroom and literally sat down on the floor, but didn't get sick. After about 15 minutes of feeling that way this morning, I was fine.

I can't be having this every's not fun. But what if it goes away? That's another component to discuss. A lot of people give up on meds when they start experiencing side effects, but if they had just hung on a little longer, their body would get used to it and it would stop. So that's why I have to talk to my doc about it tomorrow - I don't know if that is the case with this particular side effect. If this was to persist every single day indefinitely, then I don't think I can take the med, but if it's something that'll just happen the first few days to first couple weeks even, then I think I can tolerate it (albeit if I actually pass out from the dizziness, that'll be problematic!).

Many times, I got told that the migraine meds I was taking would have side effects of somnolence that would dissipate within a couple of weeks, only to find that I was still so tired I couldn't move. I agree with aqua - I can't tolerate that bone-weariness, sleep for 25 hours straight side effect...and that happens to me with any meds with "somnolence" as a side effect.

On the migraine diet business... At the headache center where I go, the only dietary restriction they have is caffeine. They said that otherwise, there are no universal triggers, and people have to find it out for themselves by creating a headache diary. Personally, my triggers are red wine and beer. I never ever have a glass or even a sip of red wine (this is tough given that my boyfriend is 100% Italian!), but sometimes I do have beer - I can get away with drinking beer once in awhile, but can NEVER get away with red wine - it's like an instant slammer. I drink caffeine, but I use it as an abortive for clusters, so that's kinda different. Some headache docs restrict anything and everything...and maybe that works for some people, but let me tell you what that does for me.... Leaves me with the same whopping migraine and leaves me miserable because I can't eat anything I like. Now when I took an MAOI, I had more dietary restrictions, but again Jefferson is kinda loose with it - they only restricted red wine, foreign beers and beers from the tap, aged meats and cheeses - that was about it! I never realized how much I love cheese until I was on the MAOI. And I know some cheeses are safe, but I just made myself cut all cheese out, lest I blow it.

I agree with making lifestyle changes, IF those changes are actually going to make a difference. I would do anything if it was going to affect my headache, but since I've tried all of those things and was stuck with the same pain (while forcing myself to do things in a way that I didn't like), I gave up. Now at least I'm not depressed over never being able to eat certain things or sleep in when I want - cuz I have pain if I do or do not do these things! It's irrelevant. The only things I must be cognizant of are red wine, beer, not eating soon enough, and a few other things.

I said to my boyfriend one day, "You know...I medicate myself to deal with the rest of the world. How is that fair?" He thought that was funny, so he keeps repeating it to me! He said I'm actually lucky because most people want to medicate themselves to deal with the rest of the world, but I would rather not! (This includes having to take triptans because people drive with bright headlights or are loud and overstimulating, and all the other things that might fall under "annoying things that cause me severe physical pain and distress...")

Sorry to ramble on! I have so much to say on this topic, having experienced side effects from the mundane to the surgery-provoking! Gotta eat now since I got home from work a bit ago and the head is throbbing since it's been too long since my last meal!

Take care!
Carrie :)

Anonymous said...

Sorry, that was a "3 day inpatient hospital stay" I meant to say in my last post... Darn side effects! Actually, that one was probably just old age!

I forgot to say that the mindfulness meditation I do for is super helpful for anxiety. I think there's a lot to be said for behavioral therapies. The last time I saw my psychiatrist, I was freaking out because I had come off my Lamictal to see if it was worsening my migraines and suffered a relapse of depression and anxiety. I had already started to titrate back up on the Lamictal but it's such a slow process that I asked my pdoc for Lithium to speed things up. He actually wouldn't give it to me and suggested my therapist (who he knows) teach me meditation. I was completely bewildered by this because every psychiatrist I have seen in the last 2 years has tried to get me to take Lithium. It wasn't that he won't let me try Lithium, it's that he didn't want me to rush into it without making an informed decision (doing some research first). In the end, I'm really glad he didn't give me the rx because I evened out after a couple weeks on a low dose of Lamictal and trying the meditation.

Midwife with a Knife said...

Hey, Dinah, no picture?

Anyway, the prednisone I have been on for weeks and will be on for many more weeks (now making a last ditch attempt at avoiding more serious treatments via the world's slowest steroid taper) really sucks for me. Bad sleep, bad mood, anxiety, increased apetite, weight gain, fluid retention, etc. But that's better than the alternatives, kind of; but only because the alternatives are either bad (ultimately I would get sick enough to get hospitalized without the prednisone, and I have to be able to function and work and play, and that's NOT an option) or other treatments with significant long term risks and also potentially serious side effects.

Right now, I'm choosing to make one more try with the devil I know. What we really need is a better way to treat the brain-side effects of prednisone. I've been told that they're "only nuisance side effects", but they're really quite a nuisance.

Anonymous said...

I wanted to comment on the Canadian students query about psychiatrists. I believe there IS a pecking order, and psychiatrists unfortunately are not at the top, or even middle as portrayed by media or as thought of in the public. As an extern, I told my client to go to a psychiatrist to be treated for major depression as I consider a psychiatrist to be like a cardiologist of the mind, and she questioned whether I was being truthful to her with her dx. She felt that it may be far worse than just ordinary depression. As being somewhat paranoid goes with her particular dx, I didnt consider it a huge deal, but I thought it to be noteworthy in light of the recent subject on your podcast. In grad school (and I went to an Ivy league school for my Master's in psychology) we were constantly told that psychiatrists score lowest for med school students - and not to expect much from them. Plus, all you do is prescribe without any other patient care/therapy. You three shatter these obvious untruths...but I thought you'd find it interesting what was being said about your profession. I wonder your take on psychologists being able to get prescription rights? I use to sell prescription meds, and am adamant that I will NEVER get into prescribing as its too complicated, and I dont think one can rely on putting all meds into a computer to see if anything is problematic. Trying to learn how the kidney processes drugs put me over the edge, and I've yet to recover. Also too, I experience pecking order disadvantage as I was immediately attracted to a Psy.D. due to highlighted work with clients over a Ph.D. working with statistics and lab rats. Ph.D.'s hold the well touted #1 position in this field, but I'm more concerned with learning how to better treat patients than conduct lab experiments and remain committed to finishing with this degree. Just interested as always in your thoughts! Thanks!

Rach said...

The sox won 24 hours ago... Something's up... We haven't heard a peep from Dinah... Or maybe she's celebrating with pizza and ice cream???

FooFoo5 said...

I am honored. But I don't want to be seen in the Wall Street Journal...

By the way, I'll bet Roy is missing because he is absorbed in the Leopard (OSX 10.5).