Tuesday, March 16, 2010

They Don't Listen - Rant

During my last two weeks of my IOP program, I had flipped into hypomania. I had stopped eating and was totally unable to sleep more than an hour or so day.

Dr. W was worried and prescribes Seroquel to make me sleep. I don't want to take the script, because I know it will put on weight, I have worked hard since Christmas to loose 12 pounds.

'It's just to help you sleep, you won't put on any weight", he assures me. I ask him for something like Ambien, something else, "No, no, I cannot give you that", but he won't tell me the reasons why.

Two days later, still on no sleep, I reluctantly fill the script, cut the pills in half like he tells me. And miracle of miracles, I sleep for a good 16 hours straight. I feel back to myself, hypomania gone.

After a week on Seroquel, I go for my weekly check at the hospital where I am attending the IOP, blood pressure monitored, blood levels checked, and then weight. I've put on 15 pounds in one week, my 12 pounds lost are back, plus an additional three. I feel like crying and indeed I do.

That night I go home and vow not to take any more Seroquel. Back to warm milk as a sleep aid. I go off it, cold turkey, and I am fine. I can still sleep. But I cannot stop eating , I cannot stop craving sugar. I am drinking over a gallon of water a day to stop the food cravings, making a food diary, an still the weight keeps coming on. And I am having problems urinating. I go to my GP and she assures me, after she gets a sample of that, everything is fine with my plumbing. But I am putting on weight, another ten pounds in 3 days. She looks at my food diary, and accuses me of either lying on it ( which I am not), or something is going haywire in my metabolism. Try to exercise more. Eat more fruit, drink more water.

The next few days, I am eating so much fruit and drinking so much water, I am living on the toilet. Indeed, I bring in a book and a radio in there to keep me company. It still hurts like heck to urinate, and I have this image in my head of King George II who died on the toilet, or my previous down stairs neighbor, who also had a heart attack and died on the toilet. I can just see my dead body on top of that, and the paramedics laughing so hard as they extract me from that, they loose their functions.

I go to Sunday dinner with my parents, and both of them make comments about how fat my face is, my fingers. I cannot even get into shoes, I'm wearing flip flops. On the scale. The number isn't bad, it's like 15 pounds of water is inside me like a sponge, unable to come out.

With all this going on, I am discharged from the IOP program, and the next day meet with a new psychiatrist. She has my records and all the meds I am on. I tell her I am not taking Seroquel anymore and she says OK. Then she starts asking me about Rispardal and wanting to put me on that, when I told her I would never ever ever take Zyprexa. I don't even want to take Ripardal. One of the side effects is weight gain. Has she not been listening? I've put on a ton of weight, even if it's water retention in the last three weeks from Seroquel.

I don't think the doctors listen to patient concerns.

I had an Aunt, who died of breast cancer a few years ago. When she was first diagnosed, she went though the Chemo like she was supposed to. The first treatment left her really sick, when she finished her second treatment, she was in agony. She phoned the doctor and asked him, "If I stop the chemo, how much longer will I live"?

She was told 6-8 months.

And with the chemo? 12-18 months.

She opted out of the chemo, stating she was over 70, and didn't want her last six months on earth to be full of pain, sickness, and side effects from the chemo. She would rather have a good six months, living each day to the fullest and go. The family totally supported her. In the end, she was on a morphine drip, totally in pain, but it was the way she wanted to go, she knew it was the way she would go either way. She had seen her husband go that way several years before.

Now take me. Every time I tell my family, I want to get off my meds, they are making me sick, they have really messed up my body and my brain, I'm told flat out, if you do , you won't live to see 50. You'll be dead within a couple of years. And I reply, statistically speaking, I should live for another 30 or 40 years. But look at all the side effects. Not to mention the grief of not having a doctor, never having a psychiatrist listen to me. My GP listens to me, as does my gynocologist. Even my dentist won't prescribe pain pills when I had a root canal two years ago, without consulting the meds I was on and making sure nothing would interfere and cause me harm.

I don't know what it is about psychiatrists. I am sure there are some good ones out there, I have actually had two in my lifetime who were caring, compassionate men, who really wanted their patients to get better. But it's like one of them once told me and this was echoed by Dr. W lately, "I couldn't become a surgeon". Or, "I just couldn't figure out what specialty I wanted, and this was the easiest one to get into". Only one told me an altruistic reason;" I wanted to help people, I had a friend/family member who suicided, and I wanted to help others".

I just want my new doctor to listen to me. If I tell them I don't want to be on a med because of weight gain, that is a serious concern. If I tell them I am tired of having a head feel like cotton balls, sleeping 16 hours a day and would like to look into holistic meds, can she work with me? If I am telling them I am concerned about a black box warning, and I am suicidal to begin with, is there anything else they can recommend?

Just treat me with respect. I treat you with respect, why can't you?


JourneyBeyondSurvival said...

I could rant for hours.

How can they not understand that the psychological trauma of being hypomanic, manic or psychotic takes half the time to work through as the psychological pain of working weight off again.

I was more upset about the thirty pounds than anything else. It took me a year to get it off. It's taken that long AGAIN. rant over.

Lili said...

Oh I am with you on this one. I had my psych roll his eyes at me and said "I'd be back for it". Yeah well it's been since October and I haven't. I also had a therapist boot me because I wouldn't go back on it. I didn't act out, didn't cause a scene-just refused to take it.

They do not listen. They like to push drugs and keep us quiet and manageable. That is their goal. My new therapist is very cool. She suggests a lot of other therapies that I am very okay with.

I actually lol went to zazzle and had a shirt made about doctor stigma. So rant on and don't let them ruin your life.

Funny thing about ambien. I was on the 10 mg a few years ago and it fizzled so they put me on ambien CR 12.5. So when I switched insurances they automatically denied me. I had to get three doctors notes saying 10 mg doesn't work for me thus the need for 12.5 CR and go through my insurance mediation group to get approved for it.

Part of me is thinking YAY the other part of me is thinking: "uh oh serious, serious side effects are on the horizon".

Kind of like seroquel before their side effects were discovered. But I will monitor my ambien carefully.

Keep ranting.

Catpriestess said...

I am so sorry you're going through the roller coaster of meds. Btw, this is my first time commenting here. I have been literally on 10 meds. within the last six months and have felt the frustration, disparity and hopelessness you are experiencing. I just kept interviewing so many p.doc's until I found one who's calm, has so many alternatives, and definitely listens to my concern about gaining weight. Just start talking to everyone you know about referrals for p.doc's and then interview them to see if they could help you. Don't give up and know that eventually you will find someone who can walk you through this extremely challenging road. Sending you many blessings.

~ N said...

Hi Susan.

(I had a big comment all done and Blogger ate it. Damn it.)

I understand your feelings on this, I really do. I have written about how much I hate doctors and doctors, over and over, but I have a couple of this to share here:

1. I won't comment on doctor's true motivation, but doctors aren't against you, really. While your concerns are completely realistic, doctors will always suggest treatments they think will help, even if you don't like them. I dispise antipsychotics, but doctors consistently suggest them as they are one of the few things left for people with intractable illness. It's possible to be on one and not gain weight - really. There are a lot of antipsychotics to try and one might work for you without that side effect. Keep that in mind.

2. Regarding the black box warning - this is somewhat overstated with whiffs of politics. Since the warning came out perscriptions of antidepressants to teens has fallen about 18%, however, suicide among teens has also _increased_ by about 18%. This may be conincidental, we don't know. But then, the data that justified the black box warning _wasn't_ causational either. It was only suggestive. Don't be so scared of it. Of course anyone put on medication should be carefully monitored for any adverse symptoms. Bipolars are often put on a mood-stabilizer along with an antidepressant to help address suicide concerns. These drugs do help _not_ commit suicide everyday.

3. Regarding alternative treatments: these treatments do not have to be used _instead_ of conventional medication, they can be used alongside, which any alternative health practitioner should be telling you. If you have a treatment (drug or not) that you would like to try, I recommend bringing research into your doctor so they can evaluate it. At least then you can be on the same page and have a conversation. Keep in mind, they will be looking for reputable science though.

But as always, your concerns are important and they deserve at least a conversation. Make sure your doctor tells you why they are suggesting a given treatment. Don't let them escape without explaining it to you. You have the right to know.

(Check out psycheducation.org. He suggests lots of mood stabilizers and antidepressants that some would consider alternative but have real science behind them. He's a doctor and he's reputable.)

Radagast said...

Here's a question for you, Susan: what would happen if you're shrink listened to you, and took you off the meds that you're averse to? Nobody knows, yet, do they, because nobody's ever tried that? Interesting, in a way: a whole universe of possibilities closed off, just like that...


susan said...

@journey, I understand. I went from 105 pounds at 5 feet tall to over 220 and I cannot seem to loose. I loose 50. 60 lbs, and then it comes back, it's just so frustrating. The few times I have been only on lithium I can bring it down to about 130-140 and feel much happier. Congrats on your weight loss. that is wonderful.

@Lili, most docs aren't touching me now. I;ve used up most of the docs in my area, and I do question them. I et you girl . I would love to see your T shirt!

@Catpriestess, I love your avatar , thank you for discovering me. My cat girl is my best friend.
A lot of the docs I have seen are tied to my medicare, th good ones don't seem to take it. I keep trying to find a good one. Thank you again for visiting and head bonks and purrs to your cats from my Holly.

Deputy's Wife said...

Preach it, sister! Has your GP checked your thyroid? When I was on Seroquel, sleeping and eating my life away, mine did and found that the cause was hypothyroidism. In the 500 page drug info packet, Seroquel says it messes with your metabolism. Just a thought.

As far as PDocs go, keep trying to find one who listens. It's so very important to our health and recovery. Who cares if you've gone through 100? You have to be your best advocate, but you know this already. :)

Anonymous said...

I couldn't agree more about Seroquel. I'm taking Seroquel (50, was on 200 for about a year), and I've gained 50lbs. The most upsetting fact is even talking with other doctors they all tend to 'agree with the medication,' meanwhile I am waving my hands in the air madly shouting No.

I suppose the worst part is I have slowly come to realization I may need to remain on Seroquel. The difficulty is that I now look medicated (overweight), and I feel it too. Ick.

Vibes to you from a quiet fellow in Canada, and everyone else in the same boat (cruise ship sized I'm sure).

Syd said...

Susan, I wish that I had answers. I know that it was quite a roller coaster with my mother who had severe depression. But at last we found a psychiatrist who understood her illness and how to help her. Physicians are human and have their flaws--some are definitely better and more up to date on things than others.

Wendy said...

No insult intended to anyone - but OMG, I'm glad to find out I'm not the only one who has failed therapy, broken up with my therapist, gained weight breathing air, been told that I must be Borderline because I lie about all the crap I eat, I lie about how the drugs effect me, I lie that all the negative symptoms I have because I have surely looked them up on the "net" AND have been made even more depressed and suicidal by drugs I don't want to take BECAUSE THEY MAKE ME FAT!!! (I was told that I was resistant because I must be lying about exercise - I could no POSSIBLY GAIN weight while logging all that time at the gym - and you know that will the exercise make me MUCH better!!) Or maybe I was eating and didn't remember it! Oh, I know it was the fricking Ambien!!!
I told my last shrink, I was going to show him my big fat ass that he denies having any part of creating... And that was the end of that relationship...
Love is blind??? NOT!!! In couples therapy, my husband AND the therapist looked as me sadly and shook their heads when my husband said he was "once" attracted to me!!!
Why can't they just help me get fooking well????
Oh, holy hell that rant felt good....

susan said...

@ Hi N. Always good to hear from you. It's just a rant, I just feel so frustrated by doctors, I don't care if they are MD's or PhD's they are really on my bad side right now. I was hospitalized 3 years ago from a black box- I got so suicidal one night from Remeron and ended up in the emergency room before I could act on it.
Thank you for the website. I will check it out!

@Matt, there have been times in my life where I have actually been off meds. I was very productive, able to actually climb the ladder at work, maintain friendships, be slender.. what not. I went through college and two masters degrees in 7 years w/out meds.. but I crashed. I always eventually crash. That's the problem w/ my family. They admit I do better but I crash and they cannot deal with that.... and each time I crash it's worse than the last time.

susan said...

@Deputy= Yes, my thyroid has been checked. It's OK. I just cannot believe the weight gain. I've finally stopped eating this week! Now comes the dieting and exercise.... at least it's Spring! ;-)

@Anon, thank you. Glad to meet you. I totally understand about the weight. Ick is right. Hope you come back again.

@Hi Syd. I cannot complain, even though this is a rant. I've seen 27 shrinks in my life, 2 were really good. In fact the first one really did look like Dr. Katz! I think the ones I have seen over the last 10-15 years are mediocre it's not so much their fault, I think it's HMO's and what not, the docs have to see more and more people each day and cannot do their jobs as effectively as they use to in the past. They don't really take the time to listen because they don't HAVE the time to listen anymore. That's the sad part. You know?

susan said...

@Wendy, rant away sweetie, rant away.

Christa said...

It too me years to find a psychiatrist who listened to me. It was a bitch for me to get off drugs. I can barely recall what I was taking now (blocked it out like a bad horror film) but I am CONVINCED the drugs added to my depression and suicidal thoughts.

Nothing like walking into a shrinks office, spending a whopping 7-10 minutes with them only to be asked if you are suicidal...and...then get a new script for drugs.

Weight is a big issue and I totally understand and empathize with you Susan. When we feel good about ourselves and the way we look it improves our mood. At least this is true for me.

Hugs from me and Rosie

Andrew said...

Susan, why not try the holistic approach? I was seeing a naturopath Dr. a couple of years ago and she helped me out a lot. And it is important to me at least to work with traditional western medical practitioners that are competent. They are out there. Go find them.

susan said...

@Andrew, I am actually starting to look into that, with a goal of seeing one by Easter! I will keep you posted. Thanks! ;-)

VICKI IN AZ said...

I want you to have what you need so much it hurts. I really get this struggle. I went from being as thin as I ever was (anorexic) when I began therapy to my heaviest now after years of therapy and the med rollercoaster. The other day my therapist told me how beautiful I am looking. I can not even say what that meant to me.
This weight issue is such a struggle.
I wish you all of the best my blog friend.
Give you kitty a head butt for me.

Lirpastar said...

I understand the frustration of having a doctor not listen to you. I have been fortunate enough to find a good psychiatrist, but I still felt like I was treated "medically." This disorder is more than just mental. I started seeing a counselor as well, and that has made a world of difference. I believe that treating the whole person is key. Too many times, doctors just treat the medical stuff and don't consider how these treatments affect the patient's daily life.

Anonymous said...

The cocktail my wife was on made her gain over 100 pounds. Those drugs slow you down, make you sleep more, and feeling like crap makes you crave carbs. Her doctor put her on Topamax which took off at least 60 of it. I started Effexor a couple of months ago. When you feel so weird in the head and drowsy it's hard to want to go to the gym, but that's what I need to do. Especially as I close in on 50.

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