Patient Losing Patience

12Jan13

What makes a good patient?

I feel like I’ve been a bad patient lately. Why? Because I have doubt. I am doubting that the medications I am on are healthy or doing the great good my doctor is predicting.

After being on drugs for so long, and being faced by a resurgence of my illness, I cannot help but wonder when do side effects become symptoms? I feel like I need to dry out. I am swimming in a pharmaceutical ocean without sight of land on the horizon.

© Copyright 2010 CorbisCorporation

So does this make me a bad patient? I try and put myself in the doctor’s shoes. I’m worried that she must see me coming and think ‘Here we go again’. I know that it’s her job and she is being paid quite well for her troubles, but can you imagine if you chose a profession to help people/cure people, and they keep coming back appointment after appointment showing little benefit from your treatment?

If I am frustrated, she must be at least mildly annoyed.

Frustrated

Does she think I am faking? I’m too confused.

I’m letting her down. I don’t feel too guilty about that, but I am I’m tired of the treatment. I’m tired of talking about it so much. I know that I have to talk about things, lest bad things follow. I’m just appalled and angry that I haven’t felt 100% myself for a long time (years?!).

I’m not making an argument against drugs – they have saved my life, absolutely. But I’m having a hard time trying to remember why I started taking certain meds. Did I start taking them to fight a side effect from another pill? Which pills are the most important? Which ones can I weed out? What are MY symptoms now? I have no idea.

Drugs4.png.pagespeed.ce.yIV9jccLIM

I worry about disappointing my doctor.

Every time I tell her that I want to lower dosages, or removing certain pills, she gets very serious and starts booking our appointments closer together. So I feel like I can either:

  1.  Please my doctor and take my drugs (and suffer the side effects)
  2.  Stand my ground and refuse drugs . . . I don’t know what follows that path, but it seems scary
  3. Please my doctor by telling her I am on the drugs, but secretly lower the dosages of certain drugs slowly (anyone who has been around the mental health pharmaceutical rainbow should get a degree for pharmacology since we know these drugs so well)

I don’t think I can do option 1) anymore. Time is ticking by and I feel so useless. Option 2) is terrifying – should I be afraid here? Any help on that?

Option 3) seems like the easiest thing to do (I’m beginning tonight)

“Keep a watch also on the faults of the patients, which often make them lie about the taking of things prescribed.” – Hippocrates (Shhh! Don’t rat me out Hippocrates!)

I’m pushing for a ‘less is more’ paradigm shift for me and my meds. Does anyone have something to share on this – I know most of us have a story about this. Have you ever been in this spot? Please share your story (email or post a comment)

barbra_kruger_belief_and_doubt_hirschorn_center

“The art of medicine consists in amusing the patient while nature cures the disease.” – Voltaire

I’m not amused . . . isn’t that the problem, or am I morose as a side effect of medications?

I’m a bad patient, but I desperately want to get better. Wish me luck.

Advertisements


23 Responses to “Patient Losing Patience”

  1. I do not think you are a bad patient at all, but an aware one. I had a friend who was bipolar and her meds were changed on her all the time–it was so hard for her but she kept up the good fight and I think that is what you are doing.

  2. It took me years to find the right cocktail

    • It’s quite the cocktail! Up to just recently, I was taking 6 different medications a day. I’ve since talked to my doctor and whittled that down to 4

  3. First of all, all doctors love their BP patients. We are the most frustrating, yet best patients they have. Ask her which group she loves and she’ll tell you it’s BPs. We just happen to be very cool people. 🙂

    Second of all, you know you best. If you think the doses are too high then you need to stand firm and make the adjustment (With the acknowledgement of your wife!). We do know a butt load about our meds, almost as much as pharmacists. I’m fortunate that my relationship with my pharms is a good one. They’re very honest with me and tell me the doses that they’ve seen good results with from their clientele. It’s your life and it wouldn’t hurt to try. You can always bump it back up if it doesn’t work, just keep in mind the amount of time it’ll take your body to recover. Mmmm brrrrains!

    Lastly, you’re an intelligent man (If I do say so myself!) and you know your stuff. Talk to your psych and tell her your concerns. She will listen!!! 🙂

    • I love the way you think 🙂
      We are a lively bunch, from time to time.
      It goes a long way to remind myself that I have a lot of control here. Time goes by so fast, with one drug after another, and eventually you end up feeling like a guinea pig!

  4. 7 moodchaser

    You know your body better than anyone. I felt increasingly overmedicated last year, and quit taking two of my meds (without doctor’s consent, which I don’t recommend). I feel so much better now. Lighter. I’m thinking more clearly. I had to add an antidepressant, but it was necessary. That said, I still don’t feel overmedicated.

    • You are right about it not being a good idea to go off meds without the doctor being in the loop!(I found out the hard way)
      I have since (with doctor’s supervision) stopped taking 2 extra drugs that brought me down. Things are better but not level.
      My doctor will not prescribe antidepressants to bipolar people – she flat out refuses, and this is frustrating! But I’m trying to manage; as long as the other drugs don’t keep me knocked out!
      🙂

      • 9 moodchaser

        I was diagnosed bipolar when a doctor prescribed me an antidepressant and I went manic. But now, even with the bipolar meds, I still struggle with depression, to the point where I can’t function. So the doc put me on the antidepressant, which is great because now I have a lot more motivation and energy … but not too much. The other meds keep my mania in check. The other good thing about the Paxil is that, since it’s an SSRI, it keeps my OCD down. I still have some issues with the OCD, but they are very minor.

  5. Being on meds is a wonderful, yet horrible thing. Side effects, yes, some are worse than others, only you can decide what you can or can’t deal with. Don’t feel bad about going to your doctor about it, I know I have with mine. I think I’ve had one meeting where everything was working alright, and that was my last visit, and now, I’m thinking something needs to be changed as I’m still showing mild signs of depression.

    I’ve gone off my meds to see if the problems I was experiencing were as a result of my meds, or something else. It almost always ended up being me, vs the meds. The few times my problems were because of my meds I told my PMD. I also have struggled with this feeling like I need to detox, usually these feelings fade in a week or so.

    Some side effects can be managed with diet, lifestyle changes, or even supplements. My Abilify makes me shake, so I take magnesium citrate to stop the shakes. When I was on other meds that made me really sleepy I had to rearrange my daily schedule to accommodate for that (Unfortunately I still dozed on the bus into work at 7:30 in the morning)

    If you don’t already have one I highly suggest starting a med journal where you keep track of what you’re on, why you’re on it, and negative and positive effects of it. I’ve found mine to be endlessly useful.

    It’s a tough road, no doubt, but don’t feel like you shouldn’t say anything to your doc about it. That’s what they get paid for. 🙂

    • Thanks for the ideas and support. I like the idea of a drug journal. I know I’ve been on a slew of drugs in the past, but for most I can only recall that ‘they didn’t work’ – maybe by keeping a journal, I can get a much better perspective.
      And I could always use a little exercise 🙂

  6. Medication can make you feel worse. At least that’s my experience. I agree with hart35. Do create a med journal. Find out everything you can about your meds. Ask the pharmacist about reactions. I had to reduce a medication because I was so low. Seems like an odd thing to for a drug that’s supposed to bring you to a place of peace. The drug was also causing terrible side effects that I didm’t really connect. I was taking over the counter meds to manage those. Unfortunately now I’m stuck with some permanent ticks and spasms in my face because I had let the side effects last too long.

    You could always ask to be monitored while reducing or changing meds. I’m not a big advocate of self managing and lies. If something goes terribly wrong then your doctor won’t have the right details to treat you.

    Hope this helps.

  7. I know exactly what you mean about being brought too low by a drug. This is what has been happening to me. It’s interesting that you mention talking to the pharmacist since I recently switched pharmacies and I think the new place just made the assumption that I was cool with everything they were giving me, but two of the drugs were new to me.
    I’ve worried about lasting side effects. I don’t think there is a lot of studies or literature on these (sorry to hear about the ticks). I know bipolar can be life threatening, and doctors look at our drugs as a ‘life over limb’ kind of effort; I know that I’ve never been told or warned about lasting side effects (aside from maybe Lithium doing damage to the liver).
    A drug journal is a great idea. I’ve got one started now and will keep notes. I’ve thought about being monitored while changing but I’m terrified of the hospital.
    You have been a big help 🙂

  8. I have been on so many different cocktails over the years that I can’t remember all of the meds that I have been on. One time I did go off all meds, with the knowledge and support of my doctor, and I did quite well for about a year. Then something went wrong, terribly, terribly wrong. If you go off meds, definitely do it under a doctor’s supervision.
    I have always been a good girl and taken exactly what the doc says to take, but this one doctor I had for years was so attached to depakote and there was nothing I could say to convince her it was damaging my cognitive function. Also the mood stabilizers I was on kept me on the depressive side of normal, and any time I happily reported having functioned on a level with “normal” people she immediately went “hypomania!” Very frustrating. It sounds like you have a lot of knowledge though and that is a wonderful thing to have. I love the idea of a med journal, wish I’d heard of that about 20 years ago.

  9. You might find some useful information about bipolar II and alternatives to meds here:

    http://www.psycheducation.org/index.html

    You might find some useful help here, as well:

    http://www.amazon.com/Bipolar-Creativity-Recurrent-Depression-The-Increasingly/dp/1594862249

    I’ve read a few of Julie A. Fast’s books too (she’s bipolar II as well).

    http://www.juliefast.com/

    The best help sometimes you can get is from a person who is managing their bipolar symptoms well and has left a map for others to follow.

    You have patient rights. The doctors are not in charge. You are. Your doctor is simply part of your team, not the leader.

    • These are great links. I’m really interested in the books by Julie Fast – how have I gone this long without hearing about her?!

      • Glad to be of help. I do a lot of personal research about mood swings, depression and its causes, and I spent some time immersed in research about bipolar.

        I just came across this yesterday and I thought of you.

        http://www.foodforthebrain.org/nutrition-solutions/bipolar-disorder/about-bipolar-disorder-%28manic-depression%29.aspx

        You probably already know about Omega 3’s right? (i hope). But maybe you don’t know about magnesium.

        “Magnesium is interesting in bipolar disorder because of its chemical similarity to lithium (lithium being the drug most commonly used as a mood stabiliser). In fact, there is some evidence that the drug lithium may attach to the places inside the cell where magnesium is supposed to attach. In studies (Chouinard, Giannini), some people with bipolar disorder or other psychiatric illnesses had differences in the amounts of magnesium in their blood. There have been some studies where magnesium was added to other treatments to stop symptoms of mania or rapid cycling. Magnesium can block the entry of too much calcium into cells (it is a natural calcium channel blocker) which may explain why it is helpful with some symptoms of illnesses. Magnesium’s role in supporting good sleep may also be quite important here, since many people with bipolar disorder experience increasingly poor sleep patterns preceding a manic episode.”

        Yeah, I sometimes get bouts of insomnia and then I have mood issues following that. I don’t think I’ve ever experienced a happy kind of manic state.

        Magnesium is easy to procure at a health food store and doesn’t have the blood toxicity that lithium does.

      • That’s good info. I hadn’t looked into Magnesium but it does make a bit of sense (but using this line of thinking, Sodium is closer to Lithium, and Magnesium is closer to Calcium – this is very interesting) I definitely have some research to do, which I love! So thank you 🙂

      • I’m not sure, you may be right.

        I wish I remembered more biochemistry. i’m dog tired tonight and my brain is turning to mush and though i’m looking at different scientific papers on the theorized pathways of lithium, I can barely see. i couldn’t sleep well last night.

        I do know that I would take a calcium/magnesium supplement for a long while and they both improved my sleep. Though ever since my mother got kidney stones from calcium supplement, I decided to get calcium through diet instead.

        Interestingly, they say that magnesium deficiency can cause thyroid dysfunction, and thyroid dysfunction is most commonly subclinical (you may pass a thyroid test and still have a failing thyroid).

        I just found this article about it (I love free scientific articles).

        http://www.hindawi.com/journals/jtr/2011/306367/

        I know I have hashimoto’s thyroiditis. This paper says:

        “Rapid cycling and other refractory forms of bipolar disorder have been particularly highlighted, since the prevalence of thyroid dysfunction appears to be greater in such forms of the disorder. The research relating to the widespread and potent antithyroid effects of lithium carbonate, the drug most commonly used for treating bipolar disorder, has been summarised next. The role of thyroid hormones in the treatment of bipolar disorder is also reviewed.”

        lithium usage can cause thyroid disease, which in turn, guess what, can cause mood/bipolar symptoms.

        isn’t that just ducky? I mean, not.

        but it gives me more evidence I was not imagining when I felt like I was rapid cycling between anxiety/panic and depression and it wasn’t just because my external circumstances were the reason. definitely a biological factor as well.

        it kind of makes me feel justified in feeling worried i’ll have another episode.

        i think my thyroid is under control for the moment without actually treating it medically. since mine is an autoimmune disorder, simply adding synthetic thyroid doesn’t really fix the immunity problem. I’ve been trying to improve my immunity by removing stressors and taking better care of my health.

        about sodium…which would come as table salt, normally right? And yet, some version are iodized…and some are not (like sea salt or kosher salt).

        i’ve cut out iodized salt because while iodine is good for hypothyroidism, it’s horrible for hashimoto’s.

        has your doctor told you about the thyroid-bipolar connection? if he hadn’t, he should be.

        anyway…thanks for the dialogue.

        i love research too. and this helps me figure out what goes on with me when I get wonky.

      • My doctor has me go for blood work every 6 months and the Thyroid hormones / glucose / liver function etc. all gets checked. I’ve been pretty lucky with doctors so far (compared to a lot of horror stories of awful doctors I’ve heard).
        I agree that having a confirmed biological factor is strangely relieving – I think we are too hard on ourselves and worry that everyone thinks we are just being lazy or weak, or whatever, when this clearly is not the case. But I think you hit the nail on the head about making sure diet and lifestyle are key as well.

      • That’s good, but I’ll just say this – my thyroid levels tested within normal, but then I had a swollen/spongy thyroid gland. Hashimoto’s autoimmune, so unless they checked the antibody levels, too, I wouldn’t have known what it was. I ended up getting checked by an endocrinologist after my GP thought it was a nodule which had a slight chance of being cancerous. Freaked me out b/c I had a friend and a sister dx with thyroid cancer not too long before that. The endocrinologist told me he wouldn’t treat me until my thyroid died completely, b/c I’d have hyperthyroidism and hypothyroidism in my close family members. If he treated me for one or the other, it would most likely overshoot it.

        Instead, I’m managing it by avoiding known triggers, using meditation/yoga and improving my immune system through diet and a few supplements (the Omega 3s, b-complex, vit D)

        I’m feeling fairly even now. I hope it lasts.

        Best wishes to you in your journey. And thanks for your blog. You have some beautifully touching posts.

  10. 22 Randy

    This was very validating. I was diagnosed with depression and anxiety over a year ago, but my therapist thinks that I am bi-polar II. My psychiatrist seems to be frustrated that I can’t tell her what is going on with me. My moods and state of mind fluctuate all of the time, so it is hard for me to know what my state of mind is. I haven’t been very helpful with my treatment, but I think it is time for some mood stabelizers.

    • Sorry for the very slow reply. I know what you are saying though. I have a really hard time describing how I feel sometimes (despite having a decent vocabulary and a poet’s soul:) )
      It makes it harder when I don’t want to share but I know that I need to.
      I can tell you that mood stabilizers have saved me. I know that some people swear against them, but for me, they are the only things that have held me together at the worst of times. I hope you got the help you needed – I’m so sorry it took this long to reply. I was lost there for a while


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s


%d bloggers like this: