If you know my story of bipolar disorder treatment, you know that it hasn’t been a pleasant one. Doctors have fired me and given up on me. I have tried a host of treatments that didn’t work. I have experienced almost every side effect under the sun. I have bumped into holes in the healthcare system that have denied me access to a psychiatrist. I’ve spent years wanting to die. I have seen, and lived through, it all. And I would say there are many unmet needs in the treatment of bipolar disorder. I would say these unmet needs are part of bipolar treatment and part of the system in which treatment is delivered. I don’t blame psychiatrists or psychiatry, specifically. I would say there is plenty of blame to go around.
So when I think about unmet needs in bipolar disorder treatment, there seems to me to be many.
Unmet Needs in the Treatment of Bipolar Disorder
For me, the biggest unmet need in the treatment of bipolar disorder is the availability of effective treatments for bipolar depression. There are only two Food and Drug Administration (FDA)-approved treatments for bipolar depression: quetiapine (Seroquel) and an olanzapine/fluoxetine combination (Symbyax); once you get past those, things get very sticky.
So if there were one thing I could invent, it would be a successful treatment for bipolar depression.
But the question is: what do you think the unmet needs in the treatment of bipolar disorder are?
Please Tell Us What the Unmet Needs of Bipolar Treatment Are
As some of you know, I have been working with Dr. Prakash Masand on several projects. (One of which allows you free access to his psychiatric education website Global Medication Education.) And today I’m working with him on defining the unmet needs of bipolar disorder treatment, but Dr. Masand and I need your help. We need your thoughts on the matter. We need your opinion. So I’m asking you to please take this very short survey on the Unmet Needs in the Treatment of Bipolar Disorder.
Now, I know, people don’t want to take the time – but this is important people! We need better treatment. We deserve better treatment. But the way to get that, is to define what the problems are first, and that’s what this survey is designed to do.
The survey is anonymous and the data will be used in aggregate. So please, take a moment and fill out this survey (link here) . You’ll have my undying love and gratitude.
(For those who might be curious, this isn’t for a drug company. This is for Dr. Masand who would like to write a paper on the subject to further raise awareness. When it is published, I will let you all know.)
Hi Natasha,
A few years ago, I stumbled upon, quite by accident, the fantastic effectiveness of tramadol [Ultram] in helping [me] with my bipolar depression. I was taking it for back pain related to an exploded lumbar disc, and I found it made me feel, for lack of a better term, even keel. No buzz. No jitters. Just clear and sure. The only problem is, as it turns out, tramadol can be rather habit forming. But aren’t all anti-psychotics?
I now take trileptal as a mood stabilizer [preferable to Lithium], as well as sertraline and lamotrigine for anxiety and depression. And although these work fairly well, NOTHING was as miraculous [for me, anyway] than tramadol. But then again, the INTENSE akathisia-like withdrawals felt like ants moving through my veins [I did my own, rapid tapering off because after about a day and a half, one time, of being without it was HELL!
But I still think the greatest of unmet needs regarding bipolar disorder is ignorance and stigma. WHY, WHY, WHY, won’t don’t people get educated on just how common mental illness is? I heard a great quote: “You wouldn’t tell a loved one with cancer to ‘just deal with it’. Depression is REAL.”
Here’s an interesting, relevant, article I think you’d enjoy:
http://discovermagazine.com/2010/jun/03-the-insanity-virus#.UYPfjut1NNl
This article, http://discovermagazine.com/2010/jun/03-the-insanity-virus#.UYPo46KOSSq is fascinating! Thanks for posting it! It makes more sense then anything I’ve heard before! I bet infection is a big part of many diseases, not just BP, Schizophrenia, and MS! Great read!
D
my understanding is that Lithium, the eldest of the Bipolar medications, is the one sole med for Bipolar… could be wrong, but that’s what I’ve always understood
it’s not used for seizures, for anxiety, for smoking cessation, for adhd/add issues, for sleep duration/onset, for anger management/explosive temperament and has a component for both bipolar mania AND bipolar depression… as I’ve been told by psychiatrists for quite a few years now
now, I get that ADs and APs and Benzos are added to it.. quite regularly and it’s not the stand alone med it once used to be.. for Bipolar (though there are still many psychs out there that will not prescribe a AD for those with Bipolar)…
moving along… I did not take the survey, but one of the needs is for employers to be more accommodating for those with mental illness, rather than be cautious – penalizing to a degree – and quick to try to rid themselves of… those employees with mental illness
I have found, over the years, that working FT and trying to see psychs and therapists on a regular basis.. much less, try to put in a group here and there… is damn right near impossible without enduring countless arguments from employers of “you are not here enough to meet your goals.” or “I cannot continue to allow you off, month after month, because work is suffering from your repeated absences.”
would be most helpful if MH professionals would be available for scheduled appointments outside of the norm M-F 8-5pm schedule
Nice explanation of general BP meds. From my understanding, APs can be useful for those suffering from a mixed episode and lithium is the first line of treatment in general – if you can withstand the side effects. I do agree that it would be nice if employers would be more accomodating if the need arises, but that certainly won’t be happening anytime soon as stigma is a real issue. However, I do think there are things we can do to cope unless things get really out of hand. The problem I experienced is when people in the workplace find out and simply treat you poorly because of it, and begin unwittingly creating an intolerable environment.
Hi Natasha,
I didn’t take the survey because I don’t qualify as being bipolar, but I’d like to make a few comments.
As for the comment above about the thyroid imbalance, I would say it would most definitely “aggravate” bipolar symptoms. Thyroid “balances” all hormones in a person’s body, it’s a “regulator”, so to speak. As for causing the bipolar, I’m not so sure.
I definitely believe meds+ talk therapy is great. Mental health counseling saved my life. I have been treated for depression but couldn’t keep taking the drugs due to physiological side-effects. I have had much harsh treatment for cancer that interfered with it.
I would venture to go out on a limb and say that if asked, most individuals diagnosed with Bp were raised by parents who either used/abused alcohol and/or drugs (either relaxants and/or “speed”) regularly. I was raised by two parents, and they both drank alcohol. We all know what this does to a person– it makes them not care or be aware. It’s an escape. So, children, who are needing to be loved, taught how to live, be responsible and social, feel or learn neither. They are neglected emotionally, which causes great emotional pain. Not knowing any better, they either become super responsible, or super irresponsible. As they grow up, this back and forth uncertainty could very well cause bipolar disorder, and many times the cycle of substance abuse just continues–so to numb that pain.
How to treat this I don’t know, but for me, talking it out lead me to the ROOT of the problem. Knowing I couldn’t go back into the past to change it, I was able to grieve over lost relationship, realize why I was so angry (I had a reason to be), and putting that behind me, even though very hard, I was able to move on with my life.
Sometimes just knowing what might have caused it, helps.
I think it’s great what you’re doing with the doctor, and wish you much success.
~ Rann xoxo
I think your experience with therapy is interesting, but I would have to disagree that BP has any root cause in a person’s upbringing, though I would agree that it can certainly help bring on episodes if you are so inclined. For me, I never had a real reason to feel depressed. Certainly my childhood wasn’t perfect, but I know so many more people who have had worse childhoods. I don’t feel delving into the past was helpful (for me at least) at all. If anything, it only provided speculations as to where certain feelings may have come from. And if you have no real explanation for periodic depressive episodes, and you are working with a therapist who is not really equipped to recognize and deal with mood disorders, you may accept something as a valid reason – simply to have an explanation. Real healing can only happen if you are dealing with the real issue. Sometimes depression just happens – and it is simply like that for some people. Not that I would wish it on anyone because it is simply AWFUL.
In short, sometimes the wrong therapy/treatment is worse than no therapy/treatment at all. I don’t do surveys, but if I had to throw my two cents worth, I do think it’s important that therapists are trained to recognize the nuances of mood disorders so the right treatment can be utilized. That’s a tall order I’m sure. And another thing – I don’t think think your general physician should be prescribing anti-depressants.
I just want to clarify…I don’t agree that a large segment of bipolar patients have parents who drink, take relaxants, or “speed”. I would say that is merely a speculation, and not a fair one at that. It is true that SOMETIMES substance issues can occur when episodic, and since bipolar has a genetic component, we can see substance abuse across generations. But this doesn’t apply to all cases. It is important to understand the nuances of any disorder so generalizations like these aren’t taken as fact. I just wanted to throw that in so relatives aren’t taking on needless guilt. Life is hard enough.
I took the survey and added a comment but on further thought, the most important unmet need is something that helps me a lot: lifestyle regulation, and regulating sleep patterns especially. Few of my doctors have even asked about sleep patterns or social rhythms. IPSRT is an excellent evidence-based therapy, but that wasn’t mentioned in the survey and isn’t something most doctors consider. Bipolar is a circadian disorder and needs to be treated as such. Zeitgebers (sleep disruptions) are my worst mania triggers, and once I go manic the whole rollercoaster begins anew.
Hello Natasha
I’m always sorry to hear of your struggles, and hope you do better.
I think social support is the greatest unmet need in the lives of people with any mental health issue. People’s capacities wax and wane no matter what the treatment. The goal should be to be the least toxic and deliver the highest quality of life, along with social and family support to make the whole experience bearable. I’m not anti-meds, it’s just that they are unsatisfactory for many people, and people deserve a “whole life” including comfort and support from friends and family.
What helped me long-term with my depression was the set of cognitive strategies in the book Feeling Good: The New Mood Therapy by David Burns. I still have rough days but I don’t get stuck. I have other things to do.
–pk—
Hi Paul,
Well, I’m always sorry to write of my troubles and hope I do better too :)
Good comment. I hope you took the survey and said that. And that’s for pointing out a resource that has helped for you. You never know who else might respond to it.
– Natasha Tracy
Natasha,
I did complete the survey. It’s great to have a doctor who is intent on listening.
–pk—
Thank you Paul for the book suggestion.
Hi Natasha – I just completed the survey. I want to say “Thank You” for your compassion and for your commitment to writing about mental health issues. Your posts are always thoughtful and educational; you have helped me tremendously over the past few months :-)
Thanks Lea, that’s so kind of you.
You’re welcome.
– Natasha Tracy
one word…..Saphris….a miracle in a pill..
I took your survey, however where I live in South Africa, and in a rural area at that – it took a very long time for doctors to get me on the correct medication. I used a lot of different meds and some of them made my situation worse. My current medication is an antidepressant – psychoanaleptic and it is good for the prevention of relapse. I’ve been on this specific medication (Venlor 75mg – Venlafaxine) for just over two years and haven’t relapsed since. The bad thing is that it leads to sexual disfunction! But I know I can not afford to stop taking meds ever again. I had too many bad stuff happen to me when I went off meds. Good Luck in your wonderful work that you do. Support from other Bipolar’s is so necessary- it keeps me going.
I have a family member who has bipolar disorder and hyperthyroidism. Some day I hope you can address the relationship between bipolar disorder and thyroid dysfunction. All I’ve been told is that they are often comorbid, but I’d like to learn more. Does hyperthyroidism trigger mania or just something that looks like mania? Do hypothyroid patients ever become manic? Can properly treating the thyroid disorder cause an abatement of bipolar symptoms, both depressive and manic? Is there some underlying organic cause of both thyroid and bipolar disorder?
I was happy to take the survey. Thank you for your work on our illness and helping others.. I am frustrated with not having access to good care for my children and their bipolar. We are saddled with an HMO by their father and can’t get good treatment. very frustrating..
Very good point Paul Winkler! Wish I’d said that in the survey.
i thought lithium was an approved treatment for bipolar. Likewise Tegretol. Am I mistaken.
Hi Dj,
Actually, there are a number of medications (many antipsychotics) approved but they are approved on for various phases of bipolar treatment. In other words, one may by approved for the treatment of bipolar mania and not bipolar depression (and this is common).
You can see the list here: http://emedicine.medscape.com/article/286342-treatment#showall
– Natasha Tracy
I too have spent years waiting to die. But today I feel the best I’ve ever felt, although I don’t feel as good as I want to feel.
I’ll be answering the survey. What I think is missing is creativity. Having recently moved, I found a new doc that recommended Deplin. My last doc never mentioned it. Whether or not it helps, my point is that just the idea of a doc recommending new things is great when we are constantly looking for what works.
I am not overly concerned about meds, as doctors don’t limit themselves to the drugs you mentioned. The one drug issue I *am* a bit concerned about is that drug companies may be shying away from development of new medications for mental health, due to the long-term investment and trials period before approval: other illnesses may produce drugs which are more clearly efficacious and quicker to market (ie, more profitable.)
My greatest concern , though, is the lack of access to good non-drug therapy. Many people are not covered for talk therapy and CBT or DBT, yet a zillion studies show the best results stem from a combination of drug and talk/other therapies. I have never had good quality non-drug therapy, and I believe it has delayed my recovery by literally years.
I agree Paul,
Here in Chelmsford, UK there are currently no psychotherapies with evidence of effectiveness for the treatment of bipolar available.
These being
1. Psychoeducation Therapy
2. Individual Cognitive behavioural Therapy
3. Interpersonal and Social Rhythm Therapy
4 Family Focused Therapy
And nothing for emotionally unstable personality disorder such as Dialectical Behavioural Therapy that you mention also.
Also there is little in the way of statutory self-management courses except the one we run as a third sector organisation.
Still I don’t know why lamotrigine (Lamictal) is not mentioned for the treatment of bipolar depression – it seems to have lost faith with prescribing people due to a rare rash. But it has the most evidence for effectiveness.
Lamotrigine has far more evidence for its effectiveness as a prophylactic treatment for bipolar depression than both Quetiapine and Symbax.
Why is it not mentioned.
Why no mention of the gold standard maintenance treatment for bipolar depression which is generally agreed to be Lamotrigine. Granted there is little evidence for its effectiveness in acute bipolar depression when antidepressants are generally used in conjunction with a mood stabiliser.
However there is more evidence for its effectiveness for prophylactic treatment then either Quetiapine or Symbax with less side-effects, notably weight gain and drowsiness, associated with these two choices you mention.
The only side-effect is a rash which can become serious but only in 1 in a 1000 cases. Well worth the risk.
From my own experience I was put on too many medicines which either did not work or made matters worse before I eventually found the evidence to support Lamotrigine.
I can’t understand why it is not the first choice option in both the UK and the USA. Why not?
Dr. Phelps http://psycheducation.org/depression/meds/lamotrigine.htm seems to think that this should be the gold standard treatment for bipolar depression as lithium should be as a mood stabiliser.
So why are we being prescribed Quetiaoine and Abilify first respectively? These two atypical antipsychotics are far more expensive, have unacceptable side-effects and have less evidence to support their effectiveness.
Trial and error?
Well lets start from the best evidence of effectiveness rather than a psychiatric consuktant’s “favourite” medicine. Might help.
Just a thought. Management of thoughts might help too. We can’t just rely on medicine particularly for the treatment of bipolar depression.
Hi David,
Well, you may consider it a “gold standard” but the FDA doesn’t. I mentioned the two drugs that the FDA has approved for treatment of bipolar depression. Lamotrigine is considered a maintenance medication, not an acute treatment. I didn’t talk about maintenance treatments.
As to my personal beliefs, they may differ from the FDA, but that doesn’t change theirs.
http://emedicine.medscape.com/article/286342-treatment#showall
– Natasha Tracy
sorry I didn’t read anything about acute treatment I just thought it was for the treatment of bipolar depression for which, apart from the FDA, lamotrigine is seen as the first line treatment for prophylaxis treatment. Granted not for acute.
Gold standard, not my words, I just agree with it.