Long Term Health vs. Current Gains

Ah, the joys of bipolar disorder.  When I started writing this a few weeks ago I was in the depths of a significant depression, thus the dark tone of the post.  While I stand by everything I wrote, I am in in a much better frame of mind today and will be revisiting this topic in the near future.

One of the things I think about a lot is that I don't even care all that much about the health effects of my meds.  I don't kid myself about the long term effects of the weight combined with my family history.  I will undoubtedly be diabetic, probably sooner rather than later.  My heart can't be happy.  My stomach is making it pretty clear that we don't like high dose Seroquel, which is a problem since I have a history of ulcers.  I wrote recently on my blog (www.masterofirony.blogspot.com) about the cognitive changes. 

 

I don't make a huge effort to fight all this.  I'd love to have the energy to exercise, which would be good overall, but I don't. 

 

I'll do what I can to maintain my health, but I  have already talked to my doctor about my desire to continue treatment even if it begins to damage things.  Lithium already did in my thyroid.  Eventually it is likely to harm my kidneys; that's pretty common after a certain length of time.  My chart indicates, and my mental health living will backs it up, that I choose to invoke some damage to my kidneys in favor of feeling better.  If I don't take lithium I feel much more ill.  My brain requires it.

 

I sometimes think about how I've said this and essentially this decision is a way I've said I'd prefer to die younger from something theoretically preventable than to have my bipolar get worse in a way that could be medication controlled.

 

The truth is though, and this sounds bad, I don't care.  This isn't a life I really want to keep living into my 90s.  In some ways I think the assault to the body is kind.  But truthfully I've had pretty much enough of life like this.  I'm not suicidal but I don't particularly want to choose to go on forever like this. 

I do agree with you and you are probably correct on your assumptions. I think for anyone with a mental illness has to live for today. What works for us today. If not, then we will die an even earlier age by self-destructive behaviors or suicide. We really don't have much of a choice now do we? Thanks for this.

Dear GJ
YOu are soooo right about the longterm effects of medication...as you already know i research like crazy in order to find out what exactly is being put into my body..(being an apiarist and naturalist i so look for natural products that the Lord put here for us to use as medicine that has long long been forgotten, but never do that without telling the doc what supplements your taking guys!!) .

I too was a late diagnosed bp...i was 38...it took and this is NOT an exxageration over a period of 3 years 54 and yes FIFTY FOUR different medications for i have a condition where some meds work OPPOSITE of what they are supposed to in my body....and then others do NOTHING at all...so doc calls me medication resistant...

HOWEVER I too am on Lamictal and oh my the changes that are GOOD have really come my way with this medication.

However I have 7 lesions on the brain and they at first thought I may be getting MS, however, it effects my balance and things too, and the lamictal DOES affect the steadiness of one so those two added together i sometimes stumble and others think (i'm sure) UHH is she drunk??!and I DON"T drink at ALL!! tehee

 but whatever, so tired of worrying what others think but i STILL DO geez... anyway

 I sooo worried about lithium due to the research i had done and then like you realized that it isn't just lithium....antipsychotics ARE damaging to the body over time...

.I often wonder if the altering of these types of medications would help in the long term....but haven't found enough to prove/disprove that yet but discussing it with doc next visit...last visit i was in a state of NEED i have been having tactile delusions .....we found that ABILIFY can help take care of some of that but it wasn't working as well in ME...not that it won't for others.....so we had to do a little tweeking of the meds...DO you ever worry about the COMBINATION of the meds we have to take, i mean it isn't just ONE there are 5 that i have to take each day..any information on how that effects the body?? I did a search and one time i found that 2 of the meds i had been prescribed DIDN"T work well together and I PERSONALLY had to tell the doc that and he looked it up and sure enough....so just make sure you research for it could be a combo making the effect you speak of..hmmmm

 

I want to commend you for being such a great parent in a confused world that your brain must have been going through all those years.

...like me, you kept going until you just couldn't anymore, that's ALRIGHT GJ you gave your best shot!!

ANd the boys i am SURE have learned so much from you that they are taking into their adult lives...it seems that sometimes if we don't make wonderlands for our kids we think we've wronged them somehow, but seriously in my PERSONAL opinion i think kids need to get back to the basics, i mean everything is handed to them and everything needs batteries and beeps and squawks and all that.

..it is much better to teach a kid with love and tenderness the BUSINESS and how to work...for in this old jungle of a world they will need those skills that you taught them. It seems we all look back on raising our kids and think, gee i wish i would've this or that.....GJ they KNOW you love them and just the fact that you mention worrying about them shows it to me, so i know they FEEL it!!

Don't beat yourself up over those years my friend, you most likely taught them more than you'll ever know about real life, empathy for your neighbor, and perserverance through all obstacles. YOu sound to me like a wonderful father.....

And your wife is very fortunate to have someone like you who is worried and concerned and wants nothing but the best for her....I know she appreciates it and realizes you are doing ALL you can to keep things under control....nothing you did in the past before medicated can be held as  purposeful my friend.

This illness makes us seem to think that we are less than others sometimes in certain areas of life and that couldn't be further from the truth...LOOK at all the GREATS that were bp...it's alright to have the creativity, the fire burning inside that makes you want to get out and tackle something, and the days of having to just stay in bed or take it easy....it isn't something we chose, but something we have to hurdle everyday (Geez, i never like track and field tehee)

...but we are NO less than any other citizen, we are stronger actually i think due to the obstacles we have to face on a daily basis...don't get me wrong there are def. times we are down, out, depressed, suicidal, delusional, paranoid, ocd or whatever title they want to throw our way, but we are MORE perceptive that is for sure (sounds, lights, motions, noise etc)...

.and our hearts are on our sleeves for we know we have this devastating illness and yet we love our families and loved ones so much that we often read into things we do and say as them taking it harshly...

..sounds like your family is very aware of the illness and very informed on the drawbacks/problems it can solve....you are fortunate to have a spouse (and so am i) that is educated on the illness and takes in stride some of the things that we may throw at them unintentionally....

 

GJ please keep us up to date on anything you find on antipsychotics, I will do the same...but please above all this know...YOU ARE A GOOD MAN< YOU care and love your family, you are doing all you can to make it easier on everyone else too, and please in the process DON"T FORGET ABOUT YOURSELF and for heavens sake DON"T stop taking the medication....I did that once, my dad was dying in the VA hospital and i really could have cared less about my meds and they never entered my mind...it was a period of 2 weeks i was without them and oh my goodness....NOT A GOOD IDEA>>>trust me on that one my friend..NOT A GOOD IDEA>>>

i almost ended up in the hospital myself and trust me that is my biggest most HUGE fear....but we were able to increment the dosage and get me back to normal...well seminormal tehee....

anyway, hold tight GJ, don't go off meds please, and keep researching

KNOWLEDGE IS POWER and TOGETHER WE CAN (maybe teehee)figure this best approach ....no one but bps know how important that is....and how together we can maybe make the medical world see inside our hearts and minds a little more...

 

I just can't imagine having this in Van Gogh's time....we are fortunate to live in this day and age when we have help and not just sent to asylums and forgotten...

 

but there is STILL a LOT LOT LOT Of work to do on the stigma of this disorder and I so wish the media would just GO AWAY for I continue to hear (in my area anyway) of mentally ill people and how they are treated by the law enforcement and others that just have NO CLUE what torture the person is internally going through....unfortunately nor do they seem to care, but that is MY perception of what i see here in my area....

PLEASE hang tough GJ,

PLEASE let me know what you find on Lamictal for i'm on it too and researching it HARD, and remember your kids love you UNCONDITIONALLY AS DOES YOUR WIFE>>>>Your a great guy and seem so compassionate and empathic to others....

 

hold tight my friend, definetly bumpy rides ahead but this too shall pass...and on to another ordeal tehee...but I'm praying for you and your family always!
Goodluck and thanks for the insightful post!!
sincerely,

ctrygirl

Thanks for this post.  I am struggling with the trade-offs right now, and it is good to be reminded of the logic of sticking with a regimen.  I am worried about whether I will ever be myself again after the meds and the episodes, even though "myself" is a thing in flux and I would have changed regardless of meds or episodes.  Even though "myself" is this person now, with less memory and not as quick.  With this history and these relationships.  But I don't know that the tension between feeling muffled and being out of control or unhealthy is ever really settled -- so please revisit it when you want to expand on these thoughts.

 

Dear GJ:

 

We don't talk much about this subject, even among ourselves.  Perhaps if we did we would see that we are a people of value and to be respected for our choices.  

 

I wrote a sharepost on this several days ago...I admit. in great trepidation, because I am severely disabled by the drugs.  BUT, I took them to give my children a stable mother......just as you are doing.  GJ, it's called " Long Term Love."

 

Mary

 

GJ, I am going to poke a little since everyone else has shared such loving support.  I worry that your depressed state has perhaps narrowed your thinking to the point where your entire life's evaluation is balanced on the shield of a peach pill.

 

What will you do with the next dangerous mania?  Or the next crisis with Kyle, who decides for himself that meds are damaging his long-term health because he has more life to live on them?

 

You are a kind and loving husband, father, and person.  Be careful about over-thinking things.  I hope you have a good therapist who will listen and ask the right questions.  It doesn't need to be one way or the other.

 

Angie 

I keep thinking about this.  I realized that there is a more simple answer, a test that I use every time I want to stop taking meds.  Because of my issues with meds, that's actually fairly frequently.

 

For the two years before I was diagnosed I was going through hell on earth.  I remember clearly realizing I plastered a smile on at a specific point walking into work each day.  I had significant panic attacks surrounding my board exams and found adjusting to being the therapist in charge difficult.  And of course my moods were out of control.

 

The first 3 1/2 years on mood stabilizers I was the poster child for compliance.  My doctor used to tell my therapist I was one of  her best patients in that regard.  But then things veered out of control and I got off meds for most of 4 months. 

 

The first thing was that I look back now and I had absolutely no idea how scarily manic I was.  I had a new-to-me therapist who also didn't realize for a few weeks, so I got away with being totally out of touch with reality.  By the time it was clear i was sick I was so, so sick.  Months of near hospitalizations, 18 blood draws to see how badly harmed my body was (only loss was my thyroid, and that I say that casually says a lot), lithium toxicity (and a night spent laying in urine on the bathroom floor after I peed myself with the force of vomiting and was too sick to move and clean up), etc. followed.  It took 3 months to begin to feel remotely ok.  The part that was amazing to me was that I had lacked any insight into what was happening; I hadn't even considered that going on and off and on and off my meds wasn't so smart.

 

Anyway, I did get a glimpse of what I feel like without meds.  And I may have been allegedly compliant before, but in reality I am much more compliant now that ever before.  It is rare these days for me to miss even one dose.

 

I guess I'm saying I found something to compare to that is a lot more relevant than my memory of what I felt like before mood stabilizers, and that memory is so powerful that it makes the meds worth it, even when I feel like I do tonight (adjustment issues).   It makes me able to committ to the fairly extreme cocktails I require and to accept the extreme doses, as well as the other weirdnesses with my meds, like my requirement to use a tad of lithium, yet not enough lithium for it to matter.

 

I also think a lot of the time when I don't want to take my meds it's just the overall anger looking for a target.  "They" say that when we quit meds we're testing our boundaries; I don't think it's that so much as sometimes we need reminded.

We all think about this so much, don't we?

 

Seems to me--when it comes to meds and control--that:

 

A little bit is too much and a little bit is not enough. 

I appreciate your candor, GJ - thanks for sharing.  That freaks me out that you & others have the long-term side effect of loss of balance from Lamictal.  I agree Lamictal seems like a wonder-drug in the short-term (virtually no side effects for me), but I, too, wonder about the long-term effects.  I've been considering Lithium as an extra stabilizer, since the Lamictal works for me but I'm still so fragile.  My pdoc said it would be ok as an add-on but he doesn't normally recommend it as the main treatment because of the side effects & extra risk of toxicity are a real drawback.  Something to think about...  I know this 'combo' approach is quite commonly used for many different ailments.  For example, with my back pain and also after surgery, I was told to take 1 Advil and 1 Tylenol together, because in combination, they maximize the benefits and actually minimize the side effects.  I found this to be true.

 

Lamictal is my mainstay drug, but I also take both Zyprexa (1 mg) and Prozac (30 mg), which also work in the same fashion, as a combination; therefore I am able to take a lower dose of each.  BTW, Zyprexa is apparently another drug that has been approved for long-term maintenance.  I agree the side effects (especially weight gain) are horrid, but many people can get away with taking just a small dose.  My doctor told me that even 1/4 of a 2.5 mg melting tablet can be beneficial (along with just a small dose of 20 - 30 mg of Prozac).  My pdoc's colleague does cutting-edge research & his latest results were to use this combo.  Something you could always ask your doctor about... the only trouble I've had is that when under stress, I need a higher dose of the Zyprexa, which makes me really drowsy & difficult to function.  I get so frustrated with these so-called 'treatments' that fix one problem but create another problem, so I can't work anyways.

 

Overall, I think the mood stabilizers (Lamictal and maybe someday Lithium as an add-on) are truly most beneficial since they truly give me that 'even-keel' I need as opposed to taking an anti-psychotic along with an anti-depressant.  Honestly, that approach seems like an 'upper and downer' approach, not completely unlike the caffeine & alcohol mix I used to rely on. 

 

 

Dear G.J.
 
Thank you for sharing this. It's so encouraging to see someone share the true nature of not only their past struggles but their current challenges in recovery as well. I identify with many of your comments.

I had my first manic episode at 14 and wasn’t treated until my second episode at 25. That's when I was diagnosed with bipolar 1. I'm now 38 and while I've had some challenges I've been able to live a stable, blessed life. My wife has also stuck by me through some behavior that was hard to live with. We don’t have children but I can still identify with much of what you shared.
 
I know meds work differently for everyone, but I wanted to encourage you and let you know there are other mood stabilizer options available besides Lithium and Lamictal. Depakote is another FDA-approved option that has a good track record behind it (FDA-approved in 1995). Some people living with bipolar have also had success with other anti-epileptics that aren’t FDA-approved for bipolar but may contain mood stabilizing properties. These include medications such as Tegretol, Trileptal, Neurontin, Topomax and Zonegran. It’s certainly worth it to explore all the possible options with your doctor.

Thanks again for being so open and honest.  It’s good to know a “BipolarConnect.com Expert” can understand and relate the way you can. :)

JC

I took Lithium for a year and blood levels for thyroid and kidneys(?) were getting high so I was told to switch over to Lamictal. Ive been on 150mg once daily for 5 months and doing well.

Question: Does it matter what dose you take? IE: 150mg vs say 300mg? If you are healthy, can your body overcome long term problems?

I am 39, was diagnosed with bipolar when I was 29 have had it since early teens. 2006 was my worst year I ended up in a phyciatric hospital after running and screaming along a busy main road. I was atttempting to kill myself. I had been on Lithium, Lorezepan and sleepers since I was diagnosed to stop the racing thoughts and nightmares, depression, mania and paranoia. After I came out of hospital I stopped all meds Sept 2006. I use meditation to relax my mind and I am writing a book. I do not work as my doctors do not feel it is advisable for me. While on meds I kept a mood chart I still do, I hate to say I was worse on my meds, falling down the stairs, memory loss, weight gain, heart racing, panic attacks, walking into things constantly, irrational fear. Now I just have the bipolar to cope with. I keep sleepers and tranqs in the house just in case and I have had to use them but I do not take regular daily meds. Sleeping keeps me well. After 5 nights without it I take my pills. I live in fear of becoming unwell again and that fear keeps me vigilant. Also when paranoid I tell people am honest and say I need to be on my own for a bit.

As you know I've decided that not only do the drugs give me awful life-threatening, life diminishing side effects,  they have never controlled my life. I will not call my life "symptoms" because I no longer believe we can't address them psychologically. This is a radical idea. Someone in this comment thread said we don't talk enough about the drugs being damaging...well it depends what circles you run in. In my corner of the blogosphere that is all we talk about and many of us are off or in the process of getting off our drugs. We all make different decisions but we all agree psychiatry is deeply flawed even if some of us choose to remain involved.

 

I do want to live a life past 50 or 60---you know people on these drugs live 25 years less on average. Google it...I swear it's the truth.

 

And I want my cognitive functioning back and I haven't given up yet. And I've been on a shitload more meds than you so you can imagine the cognitive damage I've suffered from. I've talked to enough people who have withdrawn from similar cocktails as mine to know that their cognition has greatly improved, though they have not completely cleared up. Lamictal is only one of the posions I've been on. The neuroleptics and benzos, I believe are much harder on cognition.

 

Anyway I know how you feel. And I've taken action. (I'm not implying you need to) I've just had enough of my body slowly falling apart.

 

If anyone is interested in my drug withdrawal journey visit my blog. I warn you I'm not feeling so hot right now---but that is really hormonal. I have a serious hormonal problem that acts like a mood disorder (I know this as it only happens when I'm premenstrual) I'm sure many of you will simply think I'm kidding myself but I have all sorts of alternatives that I'm working with and in time I do believe I can heal. It's a process and not an easy one. I have a lot of role models at this point. We just don't generally get heard.

 

http://bipolarblast.wordpress.com/