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Diagnosis and medication woes - should I seek second opinion?

M

Moomincow

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Oct 28, 2017
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I've known for some time (years) I've got some sort of mood disorder, after many goes on the NHS merry go round I've now been diagnosed with cyclothymia. Would greatly appreciate any input/opinions.

Basically, I experienced mild mood fluctuations most of my life but never to any great degree on the 'high' side, mostly felt like "me plus", and the lows felt numbing but not really affecting my functioning too much. Since having a child (who is now 5) I've had really pronounced mood swings including two periods of very bad depression (most recent has had me off work for several weeks) and at least one period of extreme high which I thought was hypomania, but I came across some notes I made at the time two yrs ago and now wondering if it was actually a manic episode. I've also had fairly long periods of being/feeling normal.

Anyhoo - this diagnosis of cyclothymia was given second hand, as I saw a pretty dismissive jr doctor who told me she had no idea what it was, relayed the info to a psychiatrist then came back to me with cyclothymia. She then told me that they've decided to prescribe me clotiapine. When I asked, she told me this was the only option aside from lithium, and they didn't want to give me that as it's toxic. She also told me i can't have bipolar as I've never had a manic episode. To be fair, I only came across the notes I wrote about the possibly manic episode after I'd seen her so she didn't have that info.

My instinct is to go private and get a second opinion - surely there's more treatment options? I can't find anything useful about clotiapine anywhere, which makes me really wary of taking it. Also I'm so uncomfortable with the idea of being diagnosed by someone who has never met me, on the basis of information relayed by a third party.
 
Prairie Sky

Prairie Sky

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I can't believe they'd diagnose you with cyclothymia, the "mildest" mood disorder (if there's such a thing) and then try to put you on a heavy duty antipsychotic. It's not true that it's the only option besides lithium (and it's also not true that lithium is toxic, any more than any of these other drugs.) Most of the time mood disorders are treated with meds in the class of mood stabilizers: lithium, depakote, lamictal, even tegretol. I think all these meds besides lithium are anticonvulsants. If you don't experience any psychosis, I think you're right in being hesitant to take clotiapine.

Also, I'd have to question your doctor when she said you can't be bipolar if you've never been manic. This is the realm of bipolar II, which is my own diagnosis. My lows tend to be long, crippling and extreme, but I have never had a full manic high. They still consider me bipolar. What you describe does sound more like cyclothymia to me (and don't just take my word for any of this; I'm no doctor!) but it isn't unheard of for people to move around on the spectrum. Childbirth is a huge trigger because it's a change on so many levels. Hormones, stress, strong emotions, lack of sleep, it all plays into it.
 
M

Moomincow

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Thanks for your reply - this is all so confusing! I don't understand why they have chosen something so obscure, and she didn't have a tangible explanation aside from it apparently being the only drug in the world except lithium!

Particularly interested in your insight regarding whether I'm bipolar or cyclothymic - I understand that bipolar 2 involves not so high highs with severe lows but how low is low enough? As far as I'm concerned my worst lows (particularly the most recent/current one) have been severe but I've never had anyone to compare with. It hasn't been like 0 on the mood scale but definitely a 1 or 2.

The doctor seemed very much focussed on how I was that particular day, rather than how I was the week before or three weeks before (when I had been referred urgently to the crisis team by my GP as I had severely intrusive thoughts).
 
H

Helena1

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I would get a second opinion, also have they offered you therapy? i dont underatand why they are only offering you that one drug, maybe they have their reasons based on your specific circumstances but who knows it is a bit odd.
 
M

Moomincow

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Therapy was mentioned but seemed to be as an either-or option, not as well as medication.

I have a feeling I'm going to have to grit my teeth and bear the cost of seeking private treatment, I don't fit very well with the MH services in my area - it's very well set up in terms of accessing it quickly but as has happened before I've already been told in the past I'm either too high functioning or not ill enough (exact words!) for their services because I have a FT job and I've a well set up routine which I stick to no matter how rubbish I'm feeling.
 
Prairie Sky

Prairie Sky

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Your well set up routine is really going to help you in the long term. I believe just having order and structure in life is just as beneficial for a mood disorder as either medication or therapy!

Of course it never has to be one or the other. In fact when I was first diagnosed, and then later first saw my own psychiatrist, they strongly urged me to seek therapy besides the medication regime. I didn't at first but once I did, it really has made a difference. As my doctor explained, medication levels out our moods enough so that we can begin the hard work of changing our thought patterns and routines, aiming to prevent future episodes or head them off as they start.

As for how low is low enough, I'm not really sure how to answer that. It does remind me of the question, how painful does a headache have to be before it's a migraine? I get migraines, and sometimes they're quite mild really. But they're still migraines, just like the headaches that have you in bed throwing up in agony.

It may help you to take a quiz like this and try to answer it as you feel when you're at your worst.

I really hope something works out for you. It is so frustrating when the health system gives you the runaround!
 
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