It seems like almost everyone who has been under long-term psychiatric care has embarked on a quest for the Holy Grail: the perfect medication cocktail. And it also seems like a lot of people never find it.
But I’m pleased to discover–my therapist and psych nurse both concur–that I’ve finally found mine. It treats a biological failure to produce enough of a couple critical substances: dopamine and progesterone.
I’ve known for years that dopamine was to blame for my mood and attention issues because only dopaminergic drugs ever helped. But there’s no “dopamine deficiency disorder” in the DSM, so they’ve labeled me with ADHD and Major Depressive Disorder. Although Wellbutrin XL and Adderall XR is a bad combo for most people–it makes them anxious, wired, and twitchy–it’s exactly what I need. The Adderall forces my body to produce a little more dopamine , the Wellbutrin makes it last longer, and presto! My brain works as expected when it has the right fuel. It’s extraordinarily liberating.
Countless hours scouring the Internet and medical literature suggests my genes are at fault; due to just a couple mutations, I don’t make much dopamine at all. The same goes for progesterone, which has a powerful effect on mood. Now that I take extra progesterone 10 days of the month, I only have a day or two of mild irritability and ennui, instead of two weeks of gut-wrenching depression and anxiety. My ovarian cysts are also vanishing.
I’m also taking low-dose naltrexone, the final ingredient for making it all work. How LDN interacts with hormones and mood isn’t entirely clear; but regardless of how it works, it works. Without the naltrexone, when I’m taking progesterone while under stress, the progesterone is “stolen” to make cortisol, leading to increased heart rate and canceling out the benefits of progesterone, leaving me with mood swings and a lot of physical pain. But with the naltrexone, those problems disappear again, so it seems to be a critical ingredient for my cocktail.
Depending on how you count, it took me either 23 years or 2.5 years to get here, plus numerous doctors, many of whom made things worse instead of better. Most importantly, it took genetic testing, which helped me avoid years of guinea-pig-like experimentation.
For awhile I had hoped to reduce the number of meds I rely upon. I take quite a handful a daily basis when adding in vitamins and supplements, plus stuff to manage chronic sinusitis. But having gotten to a stable state–by which I mean my mood charts barely show a blip but I can unquestionably feel the full range of emotions and at the appropriate times–I’m really OK with taking a lot of meds. Evolution should have selected my genes right out of the pool, but here I am anyway; since it seems to be the only solution, I might as well enjoy better living through chemistry.
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It really frightens me that drug cocktails are the norm. I truly understand the quest for wellness, and this is an interesting read. I think the idea of DNA testing is a fascinating approach. Good for you!
I think that the cocktail approach reflects the complexity of our inner workings: it’s just not a single-factor issue when you’re dealing with something like mood disorders, unlike a bacterial infection.
Nice to hear when psychiatry works. Interesting about the genetic piece. Maybe this is the wave of the future for everyone with significant mood issues.
90% of prescription medications are metabolized by just 6 of the the CYP450 cytochrome enzymes. If your body doesn’t metabolize at the standard rate for one or more of those enzymes, which is far more common than you might expect, then you’re going to have problems. Those problems are completely preventable with easy, fast testing and appropriate drug information. Given that tests are now available to predict what drugs will make us ill, prescribing without pharmacogenomic data is medication roulette and in my opinion, an increasingly irresponsible medical practice.
Fascinating. Clearly I need to update my psychopharm knowledge, although I don’t prescribe meds. Thanks for this information!
So glad you found what works for you. I’ve got a medicine cabinet of my own but it helps, so I’m not complaining (anymore).
Yes, sometimes it’s annoying, embarrassing, and inconvenient to take so many medications, but there’s a lot of benefit to acceptance if you’ve found something that works and doesn’t have bad side effects. If quality of life is improved, then what is to complain about? I only complain when my insurance doesn’t want to cover the medications that actually work.
I’m on the other end of that spectrum. I’m now in my mid fifties, but during my twenties and thirties (for at least fifteen years) the doctors tried to find a combination of drugs that would work to stabilize my incessantly suicidal thoughts and ideations, as well as the effects of bipolar disorder, PTSD, and dissociative disorder, as well as major depression.
It ended up not working out for me, and left me feeling like the medical community as a whole had failed me, and although there were a few meds that had a moderate effect on my symptoms, ultimately, for one reason or another (reactions, negative side effects) all the medications ended up being withdrawn, with the exception of one (Prozac). Then I lost my insurance, and could not afford the one medication that had helped a little bit in minimizing some of my depressive symptoms. Stopping the meds cold turkey threw me into a dangerous depression; the worst I’ve ever experienced. It wasn’t the only time I ended up hospitalized after a suicide attempt, but it was the worst time. I swore never to rely on medication again, or to never rely on something that could be taken away from me.
The one saving grace was my psychotherapist, who was very helpful by helping me to discover new ways to navigate the hills and valleys of bipolar disorder and disturbing PTSD flashbacks based on behavior modifications and positive reinforcement techniques, as well as some other methods (visualization, fact-checking, identification of the steps towards suicidal actions). She helped me develop the tools I would need that would allow me to keep moving forward in my life, and worked with me on resolving some of the issues that contributed towards my major depression (severe abuse as a child). We worked on things like forgiveness and empowerment and regaining control over certain areas of my life. Where the medication roulette wheel had failed, she succeeded.
Three other things I want to mention.
Any health professional (of which I’m not) will tell you that there are certain meds that should NEVER be stopped cold turkey, or all at once. Prozac is one of those meds. It wasn’t my doctor’s fault that I lost my insurance, and stopped the medication all at once when I ran out of meds and couldn’t afford to have my prescription refilled. Had I contacted my doctor’s office during that time to let them know of my circumstances, it is possible that they would have found a way to help me step down from the medication, as opposed to stopping it suddenly. I can’t fault them for not helping me gradually step down from the medication, since they were never given the opportunity to help. However, I do fault them for not warning me that stopping the medication suddenly could have disastrous results. Had I been aware of the dangers of stopping the medication suddenly, the possibility exists that I might have sought help so that I could have at least been slowly weaned off the medication.
Some would say it was my responsibility to know this (had I read all the warnings etc that come with any medication). Can’t argue with that one, other than to say that when you’ve been in a position to have been on more than fifty or sixty different medications over the course of ten or fifteen years, and your brain has been scrambled from electro-shock therapy, you pretty much quit reading all the warnings and other literature, because it all gets too overwhelming. Especially when you are fighting to simply hang on to life. It would have helped if my doctor had specifically told me, at the time the Prozac was first prescribed, that I should not, under any circumstances, stop the medication suddenly. That would have stuck in my mind, and would have helped me avoid the chemical crash that occurred when I stopped the medication suddenly after losing my insurance.
However, the second thing I wanted to mention was that the incident of the Prozac crash after losing my insurance, and the suicidal hospitalization that happened afterwards, is not the only basis for me having strong feelings about medication not being an option for me. As much as I would like to believe that a chemical cocktail might exist that would help me navigate the choppy waters of continued bipolar and PTSD and depressive episodes, I’ve had to accept that medication is not an option for me. This didn’t stop me from trying medication again, as recently as last week. In fact, I just blogged about it yesterday. Although it didn’t work out for me again this time, I was still open to the idea, and haven’t completely ruled out medication as an option. I don’t expect it will ever happen for me, but after all these fifty-plus years, I’ve learned to never say never. We just don’t know what our future might hold.
The third thing I wanted to add, and thanks for sticking with me long enough to get to the end of this, is that I’m very aware that medication DOES work for some people (you as one example). For the people that find help through medication, I can only offer up a supportive smile, and wish them well. There was a time in my life that maybe the medication kept me alive, as flawed and broken as the chemical cocktail was in my particular case. Even though as a general rule, I don’t believe in chemical dependency in any form, I can’t be so uninformed as to not recognize that for some folks, it can surely improve the quality of their life, or at the very least, offer them hope. Anything that allows hope to live within a person’s heart is a good thing. Thanks for allowing me to share some of my story.
I completely understand your point of view on this topic. I have felt utterly failed and betrayed by the medical profession many times and I’ve struggled with exceptionally bad experiences with many drugs. So many, in fact, that I wear a medical ID specifically because of drug sensitivities (there are several entire classes of drugs that I can’t take.) Most specialists can’t prescribe properly for me, even for something as seemingly simple as sinusitis; the Dymista in the picture caused tachycardia and heart palpitations.
Since most doctors don’t have the background to help me with these challenges, I’ve become a drug detective: I’m very good at figuring out what is causing problems and why, and that means the doctors can work with me pretty effectively. I should have caught on to the Dymista problem a little sooner, but since I was able to pinpoint the problem and propose a solution, I prevented further mismanagement and my treatment is right back on track, more or less (but for now with less antihistamines!)
I’m not a meds-only person and I’ve definitely benefited from therapy and other management techniques. But even my therapist noted that with this combination of chemical support, I can actually put what I’ve learned in therapy into action much more effectively. This doesn’t describe it well enough at all, but I finally feel right, like something I always knew was broken has been fixed. That fleeting feeling of wellness is no longer fleeting and the unnecessary suffering is just gone.
Even though I attempted to make my comment as balanced as possible, I realized after the fact that I might have unintentionally inferred the “medication only” approach in respect to your situation. Truly didn’t mean to do that, especially considering that your About Me page on your own blog clearly speaks to “other wellness strategies”. Moral of the story? Even when we try to cover all the bases, sometimes we still miss a few. Sorry about that.
And thanks for the response to my very long comment. Clearly, I have some opinions about medication. I’m glad for you that you are able to experience more than just a “fleeting moment of wellness” and that “the unnecessary suffering is just gone”. If the right combination of medication is helping you achieve that result, then you’re obviously doing something that works. We all look for our own way to find a similar place. Thanks for sharing your point of view as it relates to your situation.
It took awhile but I’m on a combination of meds that keeps me stable. I get very frustrated by the cost of Abilify, which is still not available in a generic. Even with my insurance, it’s really expensive. I guess I should just be happy my other meds are generic and don’t cost much.
I completely sympathize with the frustration of expense. I need brand Adderall XR and Wellbutrin XL because the generics just don’t cut it; for Wellbutrin, a generic can be worse than going without. Which means a big ugly fight with the insurance company, because those 2 meds combined cost almost $1K/month. My insurer reneged on their approval for Adderall without warning, so I have to pay the cost difference between brand and generic out of pocket. But I can’t afford not to have it, so I just do the occasional rant, get over it, and fill my prescription anyway.
I do think it’s rare for people to find the right cocktail. Good for you. 🙂
There are so many factors that go into it that it’s hard to optimize, especially without enough information. But apparently it actually is possible!
This is such an interesting post, and I just read your post/link to genetic testing as well. I don’t know much about this at all, but I do know my son was nothing more than a human guinea pig as medication after medication was given to him for his severe OCD. The best meds for him turned out to be no meds at all. Maybe genetic testing would have saved us all a lot of heartache. I’d like to link to your post(s) on my blog. Glad you are doing so well!
It’s hard to predict what will or won’t work without the extra information. For example, I would have suffered for years through trying every SSRI, SNRI, and MAOI in the book if the tests hadn’t shown that those would not work for me. I added in some extra intel from 23andme in addition to the professional tests, and found that not only am I highly likely to have severe side effects from SSRIs, I also can’t eliminate serotonin properly, so I actually get serotonin syndrome within just days of starting that kind of drug, before I even get to a therapeutic dose. But prior to that, it wasn’t enough evidence that Prozac had made me hallucinate and none of the others had been effective. Go figure.
Congratulations on finding your cocktail… I’m still working on mine. One day 🙂
Hang in there–it’s possible!
Do you think vitamins make a differ to chronic infections? X
Anything that helps the immune system do its thing should theoretically help, but there are so many situation details that it’s really hard to guess–plus I’m not that kind of doctor! But I think in general, attending to nutritional needs, via diet (preferably) or vitamins (if needed) is important for maintaining overall health.
It’s a thought my GP and I have been batting about for a while. I just wanted a ‘real’ opinion 🙂
Thanks for the input ❤
I just came across this post and found it very interesting. It’s heartening to read that you’ve achieved a good cocktail for you – and I especially appreciate that you understand the individual components and how they work for you. When first starting meds, I just wanted someone to tell me what to take, and make me better. 🙂 Of course that was terribly naive, and now I understand each component that the doc suggests. Not that we’ve achieved perfection yet, but I realize that I need to be fully educated.
It’s hard to be motivated to understand those details when you’re feeling miserable. But you can be your own advocate when you’re invested in knowing the details, which is good, because no one else is going to do it for you!
Excellent points – thank you!
I’m glad you’ve got to this point with your meds, DeeDee! Kudos to you for keeping on keeping on with finding the right balance and also to your medical professionals who have helped.
I do wonder about some people who think that medication (and combinations of medications) is a bad thing. I wonder what their thought processes are. I mean, do they think all medication is bad? Do they think a diabetic shouldn’t take insulin, or someone with a heart condition shouldn’t take warfarin? And what about someone with a kidney problem – should they not undergo dialysis? Or what about the people who have had an organ transplant and who therefore have to take medication to suppress their immune system to allow the new organ to bed in? I’m merely curious as to how some people’s thought processes work on the subject of health – especially in the light of your saying about how you’ve been through an assortment of tests to find out what your body does and doesn’t produce naturally for you.
I think many people have a very understandable bias toward preferring “natural” solutions. The problem is, that doesn’t always do enough and sometimes there’s no option but to feed the body what it really needs, like insulin or Vitamin D. For me, I just can’t consume enough Vitamin D through dietary sources to make up for my body’s inhibited ability to produce that substance, and I’m a very nutrition-conscious eater! So if I’m going to support that important part of mood function (which is an obvious low-hanging fruit for improving functioning) I’m just going to have to suck it up and swallow a couple of little gelcaps. No biggie for me, but some people have a hard time accepting that their bodies don’t operate at optimal conditions without ongoing help.
Wow! Your post has generated a lot of comments and opinions. Bottom line from my perspective is that the best treatment for most mental illness issues is a combination of medication and therapy. But finding the right medications is often a long process. Thank you for helping people understand that when your brain is functioning the way it is supposed to, everything in your life just works better. Getting to the right “cocktail,” for most people who need multiple meds, is usually worth all the stress and pain of getting there.
There’s certainly more than one avenue to getting the brain to function well, but it can be a challenge to find the right combinations of providers, medications, therapists, and everything else that makes it actually work. It takes a lot more persistence than a person in pain wants to put forth, but at the end of the day, no one else will do it for you.
Woot! Glad to hear you have the right combination for you. I seem to be at a better place than I have been in years, but even then it’s not without its random and periodic falls. I’m inspired to know that it can be done though, and even more than that I’m inspired to go back and read what I can about my cocktail to see just what it’s doing. Knowledge goes a long way, especially in this area. Thanks!
It was interesting, when I started reading up about certain types of neurotransmitter/hormone imbalance effects, I could see exactly why certain drugs were or weren’t working and why some of them were causing nasty side effects. I’m just lucky enough not to process the meds the same way as most people, so the patterns became even more obvious because of constant failures.