Musical meds, round 4

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1ofNone
Posts: 4
Joined: Sat Feb 17, 2018 8:37 pm

Musical meds, round 4

Postby 1ofNone » Sat Feb 17, 2018 9:34 pm

Going a bit outside my comfort zone to ask for some help.

I started my fourth round of musical meds for bipolar II on Feb 2. Like the 3 previous rounds this means I'll be going through at least a few months of...hell. I've been asked to tough out the latest drug regimen for another 2 weeks but at this moment am edgy and groggy and unfocused. Have managed to hide this from those around me the first 3 times but my present job is highly demanding and I'm finding myself stumbling sentences, forgetting more things than usual, and easily flustered. I'm also babbling more than usual and these are tough secrets to live with. The only reason I've agreed to keep on for another 2 weeks is because however unpleasant I am feeling right now, it's a whole lot better than falling asleep driving to work, severe nausea, postural hypotension, and many other things I've slogged through. But it's pretty draining all same, and somewhat scary.

I'm happy to share my entire life story down, but it isn't relevant at the moment. I'm posting this to say that I could use some moral support to get through this. I live alone, have only one friend I trust enough to share with and she's out of town, and English is not my cat's mother tongue (purrs are nice. I admit that. But even so). My mother is ill, my father is exhausted looking after my mom, my siblings are raising families of their own and have their own stresses and high-power jobs. My nuclear family members are all 350-500 miles away. Forgot to mention I'm physically disabled too.

Not wishing to babble further I will post this as is hoping that people of like minds will read it. Thanks to those who do, any and all input is appreciated.

PS I do have a wonderful therapist. That said, there's only so much one can pack into an hour.

ImJohn
Posts: 47
Joined: Thu Jul 20, 2017 7:42 am

Re: Musical meds, round 4

Postby ImJohn » Sun Feb 25, 2018 6:42 am

Hi Windsong,

I'm sorry you're having a tough time at the moment, but my goodness are you doing well; respect for that. Really, holding down a demanding job, pretty much alone and with a physical disability too and all that while dealing with depression not to mention the 'musical meds'. Of course I'll offer you whatever moral support I can via this forum. :D

Talking about med though: There's been a large and serious study recently on their effectiveness the results of which have been published in The Lancet. There was some press coverage on this here in the UK which is no bad thing as it focuses attention on the seriousness of depression. Anyway, I've just looked up the title of the article which is, "Comparative efficacy and acceptability of 21 antidepressant drugs for the acute treatment of adults with major depressive disorder: a systematic review and network meta-analysis" - Yeh, titles always have to be long in learned journals. I'd post a link but I was told off by a moderator for posting links here once so I don't do it anymore. But if you google a few words from the title and add 'The Lancet article' it should be in the top couple of results.

So, take heart and keep going, I know you'll come through the next couple of weeks and maybe that study will help you and your medical team find the best meds for you.

If you're from the USA think about your curling team - what a result - even though they beat the UK team I just have to respect their tenacity.

All the best

John. :D

1ofNone
Posts: 4
Joined: Sat Feb 17, 2018 8:37 pm

Re: Musical meds, round 4

Postby 1ofNone » Mon Feb 26, 2018 7:42 pm

Hi John,

Thanks for your reply. Really. I wasn't sure that anyone would answer my post. I wasn't sure anybody understood what I meant about musical meds...for anyone who's wondering, it's the process of finding a medication that works for you. To do that you have to sample a bunch, wait a while, and hope something good happens. Someday it will easy to look at a patient's DNA and know what each med would do. Probably not in my lifetime though. So I keep plugging away. It sucks but you have to tough it out to get better.

The psychiatrist who diagnosed me in 1993 started me on Round 1 and I was lucky to find something that helped level out the mood swings. It made things calmer...but not happier. So after a decade or so I told him I still felt like I was "living in a grey world." I was also getting more anxious. He suggested an add-on and antipsychotic and so began Round 2. Found a decent med but it kept me in a constant state of exhaustion - but it was the best of all I'd tried so I put up with it.

About 5 years ago I moved to a new city and the new psychiatrist wasn't convinced I was bipolar. He changed my diagnosis to melancholic depression and thought I should switch the add-on med...Round 3. I tried at least a dozen meds and all were intolerable for one reason or another. I asked for a second opinion and diagnosis changed again to MDD wth bipolar tendencies. I switched psychiatrists, more sampling, no luck. This Dr thought maybe I would need ECT. And then my personal life went to pieces so I put things on hold in order to pull myself back together, and went back to my grey world.

Last year I managed to get seen by still another psychiatrist, at a teaching hospital, who is really good. She did a workup on me with a colleague and they concluded that YES, I am bipolar! [I can't tell you how relieved I felt to hear that...it's like I'd been going in circles for 5 years]. They also came up with a meds strategy, and so now I'm on Round 4. The plan is to try yet another med for the add-on, and cut back on the main one, until a good balance is achieved. I started on Feb 2.

When I posted the first time the new meds were making me feel irritable and giddy and forgetful. My stomach wasn't happy and my sleep pattern changed...no matter when I go to sleep or how tired I feel, I'm wide awake 6-7 hours later. I couldn't stay still and concentration was off. I tend to babble (in this case, write) a lot more than usual. So I posted hoping that someone who read it might understand and be supportive. Thanks again John for the reply...and for the article, I should find it easily. It happens that I work in the Pharma industry (consultant) and mine for these types of articles as part of my day job.

A week after I posted the fatigue kicked in and I'm a slug again. Right now feeling more emotionally toned down, but still forgetful/unfocused with the change in sleep and some nausea, and drained/exhausted. I'm expecting another meds adjustment in the coming weeks and this ride will continue, for as long as it takes.

Side note: I learned from the new Dr that the medical community is starting to recognize that bipolar is under-diagnosed. I could explain why, but have babbled a lot for one post.

Final note to John: Thanks for pointing out the US curling medal, and congrats to them on the gold. I'm Canadian though, your crews played brilliantly against us and contributed to our elimination. I watched both mens and womens matches (the GB female skip! threw an amazing final stone to seal the win). We will rebound from the not-as-expected outcomes in curling and hockey (my favourite sport), all things considered 29 medals for us is worth celebrating on its own.

Posting this now before I erase it accidentally or forget to stop babbling.

Cheers
Tracy

ImJohn
Posts: 47
Joined: Thu Jul 20, 2017 7:42 am

Re: Musical meds, round 4

Postby ImJohn » Tue Feb 27, 2018 10:29 am

Hi Tracy,

Thank you for your long and interesting reply to my post. For someone who's on meds and feeling a bit unfocused you're remarkably coherent. Again I think you can take heart from that. :D

I only tried meds once myself but they only made me feel 'grey' and sort of mushy but really didn't do anything for my depression so I gave them up. Now I manage things pretty much on my own. If I stay healthy with a good diet and some exercise (especially in the fresh air), avoid the wrong sort of people (the whiny, critical, selfish ones) and make sure I'm gentle with myself I generally manage to have a good life.

I was shocked (sorry!) that you mentioned ECT as a proposed treatment option as I thought that that had been stopped years ago. Did you ever read Zen and the Art of Motorcycle Maintenance? If you did then you'll see the relevance and if not it's a good book even if rather dated by now.

I'm sorry I guessed your nationality incorrectly it's just that the majority of people posting here seem to be from the USA. Anyway, congratulations on those 29 medals which make our 5 look rather sad.

I hope the change of meds regime is starting to work out for you. And, for what it's worth, I think you're putting up with all the unpleasantness very well. I also hope that coming here for a 'bit of a chat' as it were is helping somewhat. Don't worry about babbling as I actually enjoy reading your posts.

Well, I must go and have another look around to see what else happening here.

All the very best,

John.

LisaS
Posts: 15
Joined: Sun Mar 11, 2018 3:49 am
Location: Northwest

Re: Musical meds, round 4

Postby LisaS » Fri Mar 16, 2018 2:28 am

Thank you both for posting your conversation. I am 43 and I am a professional. I am writing because your posts reminded me of some similar experiences. I am about ten years and at least three psychiatrists into the musical med, musical diagnoses, and musical treatment machine that is our mental health care system in the U.S.A. As of late, I have been researching ketamine therapy and ECT as I have most recently been labeled as a drug-resistant, anxiety-ridden depressive with bipolar leanings. I have completely given up on anything being "good" and I am losing hold of any hope for even finding some small speck of something that is at least not this absolute misery.

1ofNone
Posts: 4
Joined: Sat Feb 17, 2018 8:37 pm

Re: Musical meds, round 4

Postby 1ofNone » Sun Mar 18, 2018 8:53 am

Hi Lisa,

All those words sound quite familiar except "drug-resistant" - nobody's ever called me that though they still haven't found the right mix for me just yet, and I describe myself as intractable. I feel for you.

The process you're going thru is pretty standard, FWIW. My first psychiatrist told me that treating mental health is more art than science, because our brains respond differently to various meds (example: the one med I swear by to keep me from cycling was "worthless and horrible" to someone I know). He said the day would come when you could look at someone's DNA profile and know exactly which meds will work and which won't. He also said the day won't come in our lifetime. But there's a lot of progress being made in this of late, so who knows.

In the meantime they just try everything until they find a combination that works.

If you are a professional I would discourage you from going the ECT route. It will likely impact on your ability to do your job. Have you considered rTMS though? My new doc says that most people report no negative impact on work performance. If this round of meds fails, that is likely the next thing she will suggest. The biggest issues are 1) the initial course may disrupt your work schedule, 2) there are a number of exclusion criteria, and 3) it's not guaranteed to work any better than the meds.

The meds process sucks but I'm putting myself through it anyway, because it might be very worth it. I'm now 6 weeks into Round 4, this med is making me fel like my brain and body are made of lead but I'm used to the feeling from previous trials. It's a heck of a lot better than nausea or fainting or falling asleep at the wheel. My next psychiatrist appt is in a few weeks and my prediction she will want to up the dose. Ugh, more groggy - tough to hide from my colleagues and friends, many exhausted nights for me. Then more tweaking, this will be a long trial. My gut says that this doc is thorough, though, and she knows what she's doing, and just maybe...

Hang in there
Tracy

LisaS
Posts: 15
Joined: Sun Mar 11, 2018 3:49 am
Location: Northwest

Re: Musical meds, round 4

Postby LisaS » Mon Mar 19, 2018 1:10 am

Hello Again,

If tiredness is a constant, I have found that my adderal prescription is very helpful in that department. I used to nod off a lot, but not since starting daily adderal. I am between add-on MEDS right now. However, my anxiety is skyrocketing. The last add-on I used was just way too expensive. Time for a new one, I guess.

LisaS
Posts: 15
Joined: Sun Mar 11, 2018 3:49 am
Location: Northwest

Re: Musical meds, round 4

Postby LisaS » Sat Mar 31, 2018 11:41 pm

Hello Again,

You mentioned rTMS. What is rTMS? I have not heard of this one before. I have two months off from work coming up soon, so I am looking for something new to try. Thank you for any information, feedback, or ideas.

Sincerely,
LisaS

1ofNone
Posts: 4
Joined: Sat Feb 17, 2018 8:37 pm

Re: Musical meds, round 4

Postby 1ofNone » Wed Apr 04, 2018 12:17 am

Hi Lisa,

rTMS is repetitive transcranial magnetic stimulation. I did a quick Google on it and I think it's approved in the US. There are a number of scientific publications on it. It's giving good results in the treatment of meds-resistant depression, and most people just report a burning sensation on the scalp and not much more. The negatives are 1) there's an initial phase where you get it 5 days/week for 6 weeks (after that it's just once every few months), 2) there is a really slight risk of seizure so there are some exclusion criteria, and 3) not everyone responds to it. You might want to discuss with your dr as an option, if you don't feel you are responding to meds. My new dr wants to tinker some more first (= a looong round of musical meds) but says it might be her recommendation down the road.

Hope this helps
Tracy


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