Medication decisions

The good post will come later, when I can sit down and translate. This is about the details of the medication possibilities offered me.

When I finally went to the shrink, the appointment was ok, but, as I suspected, he wants me to take lithium. Well, it wasn’t that simple, he gave me a shitload of options, but nothing I really hadn’t looked up myself, and out of all of them, I think lithium is best. I think I decided that before I even went in.

 

I just feel sort of sick about the whole thing. It was really different to know and have decided in my head than the real moment when he put the box of lithium in my hand. Vitamin L.

 

It sort of makes me want to kill myself that I get the official BIPOLAR, TAKE LITHIUM; NO FOOLING YOURSELF ANYMORE diagnosis in the same week as Britney Spears.

 

Another thing that sort of freaked me out is that he thought that ADHD is a huge part of the problem. Now, I can see why he thinks that. I am increasingly scattered in recent years. It’s worse when I’m in his office because that makes me nervous. But I am 100% sure I didn’t have ADD as a kid. I used to be able to sit and read for like 12 hours straight. I can’t anymore, and have increasing difficulty studying, just cannot sit and do it. But I’m sure it’s not ADD, I never had anything like that, no trouble in school, etc.

 

So I’m afraid that this is wrecking some new part of my brain…that it is getting worse, that I’m losing function. I guess I will talk to him about that maybe next time. The natural history of the disease. Am I going to end up seriously impaired? I think that from what I can tell, psychiatrists are really bad at doing research on large numbers of people – and they have no good answer. A lot of papers out there say, oh, they get worse over time, disabling, etc. BUT now that I have seen how drug company research is done, a lot of the times they make that case to say, “Here, look, it’s horrible, they need to BUY MORE OF OUR DRUGS or something HORRIBLE WILL HAPPEN.”

 

So here are the drug options he put down, and my ideas about them. I ran this by Jake for another opinion…

 

1. This was my idea – another tricyclic, similar to the one that I am taking that is doing me the sunburn. He didn’t know if that would do the same sunburn, and as far as I can tell, and I’ve looked in medical lit, no one knows. Possibly, in the pharmacist literature, someone somewhere has written what exact breakdown product of the drug that does that is, and if it is exactly the same for all of the class, or I can maybe gain a few years of not having to take a mood stabilizer by using a different drug and letting its breakdown product build up in my skin and give me these burns, and then even maybe be able to switch back to the other one and let it build up again.

 

He was not crazy about this idea, because he said, well, look, you’ve been manic a couple of times on it, and depressed more than that, so you’d probably be better off with something else.

 

Anyway, we left that an open option. He is going to see if he can get an answer, and Jake’s wife is a pharmacist, and through her he knows this clinical pharmacist who only works with psych drugs, and if anyone in the world will know the answer to that, he will…

 

So I talked to the super pharmacist and he also didn’t have an answer about whether another will burn me too. (This was a horrible conversation for a lot of reasons, sort of a weird guy to talk to, basically told me I was going to crash and burn.)

 

2. Lamotrigine. This is a new drug from the mid 1990s that started as an epilepsy drug that is also now widely used as a mood stabilizer. Unfortunately, a while back, I found out about a clinical trial sponsored by the company where they tried it in a different disease, and they certainly exaggerated the raw data, spun the statistics to get the drug licensed to be sold for that disease. I’m not naive, I know that this is pretty standard in medicine, and I know that every drug company does that, but I happened to hear about this one and pretty much want nothing to do with it. So I ruled that out. Also, very very rarely, it can cause a horrible skin reaction that can even be fatal. The pictures of that are bad enough to also turn me off.

 

3. Valproate. Another drug from around the same time as lamotrigine, similar concept, causes weight gain (extreme), and rarely, makes your liver die. I am not as strongly against this as lamotrigine, but I also suspect it isn’t as effective as it is made out to be.

 

4. Lithium – since it is basically an element (in salt form), no one can patent it or make any money off of it. It has been around for almost 100 years in present form. It has been widely studied. In what I can see from the literature, it is probably the most effective drug out there, but has lots of problems. It can wreck your kidneys. It can wreck your thyroid. It makes you pee a lot, possibly gain weight, retain water, and hands shake. Makes you nauseous. Gives you acne. Needs to be closely monitored because just a little bit too much is highly toxic. Needs to be closely monitored on the kidney and thyroid thing. But – for people who can stand it, it is effective, cheap, and WELL STUDIED. I mean, I don’t think they are going to discover that it makes your brain catch on fire or anything like that. This is always a risk with new drugs.

 

It has sort of a terrible reputation, but I don’t really think it’s fair. A lot of drug company hype is to say, “What we have is bad, what we are selling now is so much better.” Well, just because they haven’t discovered all the bad stuff of what they are selling doesn’t mean it ain’t there. And I’d rather know exactly what it can do bad than just not know and take something else hoping for the best.

 

My fear with lithium is that it will take away my enthusiasm – how I can dive into anything and get so excited and feel alive. I won’t take up celestial navigation and astronomy and sewing and everything with as much zeal. Some of the people on the discussion board told me that that is more of a myth than true. It does stop the mood swings, but not the underlying personality traits that go with them.

 

 

Also, are these side effects worse than the ones I am having with the tricyclic? The burning under any light and having to live in darkness? The inability to stand up for more than a minute without fainting? The hunger and weight gain? The continuous heart rate of 140? So I’ll fuck up some kidneys and thyroid instead of heart and gut. Is it worse?

 

And here’s just the real problem for me, and I know this is idiotic, but, the stigma. Vitamin L. I can go get the labs done by going to a lab and paying cash under a fake name, but my family doc, who needs to order the EKGs, the kidney stuff, thyroid stuff etc…is anal about writing things down right in files…would write down something like, “Ordered for followup for lithium treatment” – and the way things are here, anyone swipes my health insurance card and they see that immediately. As is, I can’t even go to the gynecologist without getting treated like a crazy person (which, I guess, I am, so fair enough).

 

By the way, no one knows how any of those three work. So, no guesses by mechanism of action what might work.

 

5. Duloxetine (Cymbalta) – this is a new drug that is sort of like Effexor. It is like an SSRI but also works on noradrenaline, like the tricyclics, but is structurally unrelated. Serotonin and noradrenaline reuptake inhibitor. My big problem – it has been on the market for 2 years. Despite heavy marketing, to me, it doesn’t look like it does much more for people than Prozac or Paxil when I look at the published data, of which there is not much. Again, there is the issue of 2 years on the market, doesn’t look like a wonder drug to me, despite how they market it, and again, there is always the possibility of discovering that it makes your brain catch on fire, fall out your ears, or some other unexpected result. I pretty much ruled this out. Jake said he wouldn’t go near it either.

 

6. What the shrink really wants – lithium + some antidepressant or other. I’m against this, just because only the tricyclics didn’t make me stupid, and apparently I can’t take them, or if I can take a different one, why the lithium then? And if the lithium will curb the moods, why the antidepressant? Also, I’d rather not pump more chemicals into my poor, abused brain than necessary.

At the very least, finally facing this a little more has been good in that when I woke up hysterical in the wee hours of the morning, as has been happening for months now, I managed to write the outline for an essay about this…it really flowed like things do when I write well, I think I am going to go with the metaphor that came to me in the night. I think it’s a good metaphor, I was so goddamned determined not to end up like them, but I didn’t know the name of the monster that was chasing me. Invoke the magic of knowing something’s name.

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5 Comments

  1. MyAlterEgo,

    I’m sorry that you hold a strong bias against trying Lamictal. It has been a wonderful drug for me for about two years. Raw data doesn’t mean much to me. Each of these medications comes with their own risks and each person is different. As my Dad used to say the proof is in the pudding.

    I’ve taken Li and comparatively the Lamictal is like taking air. I did have an increase of headaches while taking this medication but after about two months I have had no noticeable side effects. It did however seem to take forever to escalate up to my present dosage. I wish you the very best as you find the drug that offers you relief from your present symptoms.

  2. I have to head out the door in like 7 1/2 seconds, but want to respond to this post (and the comments you put on my blog)… Will do so tonight (so tomorrow morning your time?)
    … Thinking of you…

    ~R

  3. I do know that lamotrigine is supposed to be much easier as far as side effects than lithium. And I know I’m semi-unreasonable. I just had a horrible experience with the company.

    Anyway, hi JForever, and thanks for dropping in some input. I am really happy to hear from anyone who has more experience than me.

    Rach – I’m headed to some relatives tonight, will try to look from there…if not, I might be off a couple of days.

  4. You might have to try many combinations of drugs before finding the right “cocktail.” Everyone reacts differently. Lithium worked great for me. I felt sooo good, not sky high good, but balanced. The side effects just really sucked. Hair loss, extreme thirst, shaky hands, and weight gain were the worst. As for Lithium dampening your enthusiasm, that can happen with many drugs.

    Trileptal has worked well for me for years as a mood stabilizer. The worst side effect in my case is memory loss. This is a common side effect with many psychotropic drugs though.

  5. Shit. I was hoping the lithium wasn’t the hair loss one. I love my long hair, it’s one of my true vanities.


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