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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by j-legs on February 20, 2011, at 5:58:59
I have never written before about this, mainly because I think I am afraid to let it out.
Five years ago, at 38, I was a 5'2",135 lb. woman with severe depressive bi-polar disorder and anxiety. I managed to get two degrees, two beautiful children and a husband with some use of SSRI's, that all eventually petered out. However, despite my illness, and it's inherent problems, I was HEALTHY.
I was put on Nardil a year ago beccause of the "immunity" to SSRI's. "He" started me at 15 mg and ended up at 90. Why? because it didn't work. I was also put on Tegretol. These two medications are poison together and my pharmacist was very hesitant and upset about giving them to me...but I wanted to feel better mentally, right? But I didn't feel better, I started feeling very poorly. So I investigated, looked it up in the National Institute of Health TOXNET site. I was horrified to realize I was just being experimented on. I was just a complaining woman. Now I am a woman with a raised ANA level indicating possible drug induced lupus (see Tegretol), hypothyroidism, asthma treated with sterioids, sleep apnea treated with c-pap, EXTREME edema, enormous weight gain, horrible numb arms and hands with shooting pains. My blood pressure is high and never was, my heart rate is high, and never was. I can't even walk to the bus stop with my son without gasping for air and feeling like I'm going to black out. I never sleep because of vivid nightmares (even with a script sleeping pill.)
In the next two weeks I am scheduled for a cardio catheter, to see if my symptoms are from congestive heart failure, also another effect of Tegretol mixed with Nardil. I am crying my eyes out because I am so scared. My children are only 6 and 8 years old. No one in my family really understands the constant state of fear, pain and exhaustion I am in. But, I am pretty tough. I was a very strong woman before this, I was a dancer, a swimmer. I loved life despite the agony of the reoccurring depression. Now I am so afraid to lose it. Maybe I am just depressed. I am on 15 mg of Nardil alone now, with only one week to go until I am off of it. Now that I am almost off of it, and nothing seems to be getting better, this is my doctors reccomendation. I've been to the er twice, had 3 cardio tests done, lung tests and now see a rheumatologist. (lupus) Everything is "off", but not so "off" that anyone is thinking much about it. It's the big picture you idiots. My rheumatologist thinks I am "just depressed" because I've taken to crying out of frustration. I am just looking for attention. Making it up. How do you make up your ring size going up 4 sizes? How do you stop your period for a year? Why would I want to pay so much on co-pays and drugs and missed work?
I swear to God, if this was caused by a drug "oversight" I will make them pay dearly...For every snide remark, for every condescending look, for all those "educated" people who just told me I was having a panic attack, for my husband who wants to leave because he can't handle it any more...but most of all for my good little boys who have waited and waited for their mommy so patiently. It's ok kids, the doctors are going to send us to Disney World...just have to make it through 'till then...
Posted by polarbear206 on February 20, 2011, at 9:54:06
In reply to just an experiment..., posted by j-legs on February 20, 2011, at 5:58:59
> I have never written before about this, mainly because I think I am afraid to let it out.
> Five years ago, at 38, I was a 5'2",135 lb. woman with severe depressive bi-polar disorder and anxiety. I managed to get two degrees, two beautiful children and a husband with some use of SSRI's, that all eventually petered out. However, despite my illness, and it's inherent problems, I was HEALTHY.
> I was put on Nardil a year ago beccause of the "immunity" to SSRI's. "He" started me at 15 mg and ended up at 90. Why? because it didn't work. I was also put on Tegretol. These two medications are poison together and my pharmacist was very hesitant and upset about giving them to me...but I wanted to feel better mentally, right? But I didn't feel better, I started feeling very poorly. So I investigated, looked it up in the National Institute of Health TOXNET site. I was horrified to realize I was just being experimented on. I was just a complaining woman. Now I am a woman with a raised ANA level indicating possible drug induced lupus (see Tegretol), hypothyroidism, asthma treated with sterioids, sleep apnea treated with c-pap, EXTREME edema, enormous weight gain, horrible numb arms and hands with shooting pains. My blood pressure is high and never was, my heart rate is high, and never was. I can't even walk to the bus stop with my son without gasping for air and feeling like I'm going to black out. I never sleep because of vivid nightmares (even with a script sleeping pill.)
> In the next two weeks I am scheduled for a cardio catheter, to see if my symptoms are from congestive heart failure, also another effect of Tegretol mixed with Nardil. I am crying my eyes out because I am so scared. My children are only 6 and 8 years old. No one in my family really understands the constant state of fear, pain and exhaustion I am in. But, I am pretty tough. I was a very strong woman before this, I was a dancer, a swimmer. I loved life despite the agony of the reoccurring depression. Now I am so afraid to lose it. Maybe I am just depressed. I am on 15 mg of Nardil alone now, with only one week to go until I am off of it. Now that I am almost off of it, and nothing seems to be getting better, this is my doctors reccomendation. I've been to the er twice, had 3 cardio tests done, lung tests and now see a rheumatologist. (lupus) Everything is "off", but not so "off" that anyone is thinking much about it. It's the big picture you idiots. My rheumatologist thinks I am "just depressed" because I've taken to crying out of frustration. I am just looking for attention. Making it up. How do you make up your ring size going up 4 sizes? How do you stop your period for a year? Why would I want to pay so much on co-pays and drugs and missed work?
> I swear to God, if this was caused by a drug "oversight" I will make them pay dearly...For every snide remark, for every condescending look, for all those "educated" people who just told me I was having a panic attack, for my husband who wants to leave because he can't handle it any more...but most of all for my good little boys who have waited and waited for their mommy so patiently. It's ok kids, the doctors are going to send us to Disney World...just have to make it through 'till then...Was Metabolic Syndrome discussed with your doctor?
Posted by Phillipa on February 20, 2011, at 11:20:10
In reply to Re: just an experiment..., posted by polarbear206 on February 20, 2011, at 9:54:06
Seriously what makes you think of metabolic syndrome? I ask as seems the depression and poop out led to the use of nardil. I'm trying to learn from reading your history. Phillipa
Posted by Phillipa on February 20, 2011, at 11:21:13
In reply to just an experiment..., posted by j-legs on February 20, 2011, at 5:58:59
j-legs this is a horrible story my heart goes out to you. Phillipa
Posted by ed_uk2010 on February 20, 2011, at 15:21:36
In reply to just an experiment..., posted by j-legs on February 20, 2011, at 5:58:59
Hi there
I'm sorry to hear your story. You're been through a lot.
>These two medications are poison together and my pharmacist was very hesitant and upset about giving them to me...
Although combining Nardil with Tegretol is officially contraindicated, there isn't actually any evidence that they interact. Some of your symptoms certainly sound like medication adverse effects - but not a drug interaction as such.
>I was horrified to realize I was just being experimented on.
I'm sure your doctor wanted you to get better, but you bad reaction to the medication ought to have been recognized and dealt with at an early stage.
>Now I am a woman with a raised ANA level indicating possible drug induced lupus (see Tegretol)...
That's a possibility. I hope it will resolve quickly now that Tegretol has been stopped.
>sleep apnea treated with c-pap, EXTREME edema, enormous weight gain
Weight gain and edema are common adverse effects of Nardil. I think you will start to lose the weight once Nardil has been stopped and the sleep apnea will improve as a result.
>horrible numb arms and hands with shooting pains.
I think there is a variety of possible causes here. Nardil can cause vitamin B6 deficiency which has been implicated in causing neuropathy. Supplementation with pyridoxine tablets might help.
>My blood pressure is high and never was, my heart rate is high, and never was. I can't even walk to the bus stop with my son without gasping for air and feeling like I'm going to black out.
I suspect that all of these symptoms are a result of the weight gain and edema due to Nardil. As bad as you feel now, I do think you will get much better once you start to lose weight.
>I never sleep because of vivid nightmares (even with a script sleeping pill).
Nightmares are frequent during withdrawal from Nardil (and other antidepressants). Things should return to normal a few weeks after you have stopped taking it. At least they always have done for me.
>In the next two weeks I am scheduled for a cardio catheter, to see if my symptoms are from congestive heart failure, also another effect of Tegretol mixed with Nardil.
Nardil causes edema relatively frequently. It is usually mild, though obviously not in your case. Fortunaltely, Nardil edema does not seem to be due to heart failure and is readily reversible after stopping the medication.
I don't have anything profound to say, but you must try to keep your hopes up. There is every reason to believe that your physical symptoms will improve substantially in the weeks and months after you stop Nardil. Obviously, you will not feel better overnight, but you will get better in time. Your psychological symptoms may be more difficult to treat, especially since medication hasn't been helpful. You will obviously need to be cautious with any further trials of medication.
Take care.
Posted by Christ_empowered on February 21, 2011, at 10:07:42
In reply to Re: just an experiment..., posted by ed_uk2010 on February 20, 2011, at 15:21:36
Hey. I read over your story, and my heart goes out to you. "Mental patients" are mistreated by so many people, including those "professionals" who are paid to treat us.
I was put on high dose stimulants, had a manic episode, and was put into a detox facility where I was blamed for everything. My dose was too high because I was "narcissistic" and "manipulative." After I left and stopped going to psychiatrists, the shrink who treated me broke confidentiality and told people in my small town about my "issues" (his version of it all, anyway).
I was burned out and prematurely aged and severely mentally ill (I have Bipolar I w/ psychotic features, but I was so pissed off at the medical establishment that I refused to get help). Fast forward a couple years: one of my ex-shrinks is being investigated by the state medical board, subpoenas have been issued for my records from the doctors who used to talk about me, and I'm healthier than ever, living in a new town. I see a reasonable doctor and a good therapist.THERE IS HOPE!!! Terrible as you may feel now, things will get better.
Posted by Phillipa on February 21, 2011, at 20:09:48
In reply to I've been there, posted by Christ_empowered on February 21, 2011, at 10:07:42
Congrats on the doc getting caught!!!! Phillipa
Posted by hyperfocus on February 22, 2011, at 12:56:18
In reply to just an experiment..., posted by j-legs on February 20, 2011, at 5:58:59
Hello j-legs I'm sorry you have to go through all of this but I agree with the other posters that your physical symptoms will probably go away once you terminate the meds. I don't know why your doc didn't try a TCA or an SNRI before Nardil. Nardil is sort of the nuclear option that can be very effective on treatment-resistant depression but can have a bunch of serious effects and requires constant monitoring and patient feedback. Lamictal also is a first option for bi-polar with much less risk of serious side-effects than Tegretol I think. Not sure what your doc was thinking there.
I think that you should find another doctor to care for you. You might be better off seeing one doctor who can evaluate and manage all of your symptoms as a single cohesive whole, than a whole platoon of specialists poking at you piecemeal. Unfortunately there are a lot of docs who don't have any compassion or common-sense for their patients. All of us who have MI have had experiences like what you described. But an intern or GP who actually cares about you can undo all the crap the other specialists have done to you.
Hang in there, you're tough, you're still young and you've got a lot of living to do.
This is the end of the thread.
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