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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 13 of 13. This is the beginning of the thread.
Posted by loni on December 3, 2003, at 14:00:51
I had a completely unexpected experience recently that I wanted to share with all of you.
I've struggled with treatment-resistent depression since my early teens. Being very sensitive, I've always felt guilty about my depression...it wasn't as bad as say....diabetes, right? Well, wrong. After an early hospitalization from an awful med reaction and then disability from Effexor W/D, my mood changed from guilt to anger. This WAS a real illness, it wasn't in my head, it could be life threatening without treatment and it was debilitating. However, where my mother told the WORLD when my sister had a form of curable Hodegkin's disease and rallied all sorts of support, my brush with seizures, aphasia, loss of coordination, migraines and other issues due to Effexor W/D was "hushed up" and no one in the family was told. How dare they let me lie there, alone and forgotten with no one to help my husband and I? While 40-60 people had rushed in to be there for my younger sister! Even my mother declined to come out.
Now I know intellectually that it is her own fear and guilt driving this. Depression runs in her family. I was the first one "out of the closet" regarding treatment and I am not shy to talk about it, to her chagrin. More and more people admit to me..."I think I have..." because I insist on being open about it and treating it like diabetes or any other chronic condition.
But, in my heart, I hurt terribly. I felt completely unvalidated and this just compounded my guilt and pain.
I was put on Parnate this time around and my pDoc thought it was a good idea to buy a med ID bracelet. (I'm on a few things) I sprang for the nicest one I could find, offered through a website called Lauren's Hope. It was a beautiful piece of jewelry, and useful.
And something strange happened.
With that bracelet to point to on my wrist, its familiar silver tag with the red med alert symbol gleaming, I didn't have to explain anything. There was the proof. Everything I was experiencing was real, I needed to take care of myself, and that bracelet on my wrist always reminds me. If I can't eat something specific (Parnate requires an adjusted diet), I point to the bracelet. I don't have to explain. I am a survivor and a fighter and I have my badge and I don't have to feel guilty ever again.
My mom? She may turn a deaf ear to many things, but she is respectful of this symbol on my wrist.
Who knew? It was a good choice. A good investment. My badge of courage. :)
Posted by Psychopoppy on December 3, 2003, at 15:03:32
In reply to Validated by a Med ID Bracelet?, posted by loni on December 3, 2003, at 14:00:51
Thats an incredible story indeed. I can truly relate to your feelings. Depression runs in my mom's family too and as time passes I learn more and more about how this aunt and that cousin has also suffered from it. Despite all that its impossible to get a real understanding from people (even my own father who has lived with my paranoid schizophrenic mother for 41 years now !). Her illness is psychotic and so it explains itself. But for depression, they think that its jut a question of altering one's attitude and getting on with things. I have wanted to end my life many times (although never attempted it), so isnt't this a life-threatening disease too ? Sometimes I wish I had something more "concrete" like cancer or viral meningitis so then I could have a good enough excuse for why I am "disabled" and "sick" for the world.I am glad that your med bracelet has given you the validation you were looking for and even better that you dont have to explain anything !
Psychopoppy.
Posted by dandelion on December 3, 2003, at 15:38:51
In reply to Validated by a Med ID Bracelet?, posted by loni on December 3, 2003, at 14:00:51
Reading your post made me feel proud. I like that you are standing up for yourself and being true to yourself, and the fact that your illness is part of who you are. My family was the same way with the "hush-hush" business. My uncle had a "nervous breakdown" when i was in 11th grade (later diagnosed as Paranoid Schizo/Paranoid Personality D/O). When my mother found out that i had told my best friend, she was *furious* with me. "Our family business *stays* in this family."
Now, 10 years later, she tells me that my being depressed and full of rage is "just part of [your] personality". That kills me. It makes me feel as if she thinks of me as the "bad seed". And it seems as though she can't believe how open and honest I am with people about my taking meds, seeing a therapist, etc. Like it is something to be ashamed about. Personally, I'm more ashamed of her inability to accept her own daughter for who she is....
The other day I was talking to my sister and she said, "Can't MDs diagnose schizophrenia through a brain scan?" How great would that be, if mental illnesses could be "seen" on an MRI or catscan. "Look! There it is! That is the little sucker that isn't producing enough dopamine, serotonin,etc etc." Perhaps that would make things so much easier...telling people, "hey, i took a blood test, and it says i am depressed. It's a brain disorder. This *isn't* my personality. I *don't* want to feel this way"
Perhaps that would help in reducing the stigma a bit. Oh well, I got off track. Just wanted to say GOOD FOR YOU!
Posted by T_R_D on December 4, 2003, at 11:07:36
In reply to Validated by a Med ID Bracelet?, posted by loni on December 3, 2003, at 14:00:51
I used to wear one while I was taking an MAOI as well...I still have it as a "souvenir." Sometimes I actually miss it!
Posted by KimberlyDi on December 5, 2003, at 10:18:10
In reply to Validated by a Med ID Bracelet?, posted by loni on December 3, 2003, at 14:00:51
It would need to be a charm bracelet for me, as I switch back and forth on med combo's! LOL
Great idea. You sound great too. Confident and assertive.KDi in TX
> I had a completely unexpected experience recently that I wanted to share with all of you.
>
> I've struggled with treatment-resistent depression since my early teens. Being very sensitive, I've always felt guilty about my depression...it wasn't as bad as say....diabetes, right? Well, wrong. After an early hospitalization from an awful med reaction and then disability from Effexor W/D, my mood changed from guilt to anger. This WAS a real illness, it wasn't in my head, it could be life threatening without treatment and it was debilitating. However, where my mother told the WORLD when my sister had a form of curable Hodegkin's disease and rallied all sorts of support, my brush with seizures, aphasia, loss of coordination, migraines and other issues due to Effexor W/D was "hushed up" and no one in the family was told. How dare they let me lie there, alone and forgotten with no one to help my husband and I? While 40-60 people had rushed in to be there for my younger sister! Even my mother declined to come out.
>
> Now I know intellectually that it is her own fear and guilt driving this. Depression runs in her family. I was the first one "out of the closet" regarding treatment and I am not shy to talk about it, to her chagrin. More and more people admit to me..."I think I have..." because I insist on being open about it and treating it like diabetes or any other chronic condition.
>
> But, in my heart, I hurt terribly. I felt completely unvalidated and this just compounded my guilt and pain.
>
> I was put on Parnate this time around and my pDoc thought it was a good idea to buy a med ID bracelet. (I'm on a few things) I sprang for the nicest one I could find, offered through a website called Lauren's Hope. It was a beautiful piece of jewelry, and useful.
>
> And something strange happened.
>
> With that bracelet to point to on my wrist, its familiar silver tag with the red med alert symbol gleaming, I didn't have to explain anything. There was the proof. Everything I was experiencing was real, I needed to take care of myself, and that bracelet on my wrist always reminds me. If I can't eat something specific (Parnate requires an adjusted diet), I point to the bracelet. I don't have to explain. I am a survivor and a fighter and I have my badge and I don't have to feel guilty ever again.
>
> My mom? She may turn a deaf ear to many things, but she is respectful of this symbol on my wrist.
>
> Who knew? It was a good choice. A good investment. My badge of courage. :)
Posted by Dinah on December 5, 2003, at 12:03:49
In reply to Re: Validated by a Med ID Bracelet? » loni, posted by KimberlyDi on December 5, 2003, at 10:18:10
I LOVE that idea! A meds charm bracelet. Maybe with the cute cartoon characters for the meds that have them. That way when a doc asks for our med regimen, we'd have them right at wrist. :)
Posted by KimberlyDi on December 5, 2003, at 16:49:26
In reply to Re: Validated by a Med ID Bracelet? » KimberlyDi, posted by Dinah on December 5, 2003, at 12:03:49
> I LOVE that idea! A meds charm bracelet. Maybe with the cute cartoon characters for the meds that have them. That way when a doc asks for our med regimen, we'd have them right at wrist. :)
lol... the Zoloft white blob.
I tossed the idea to Lauren's Hope but she railroaded me with a salespitch for her existing products. I don't really want to spend $60 at Lauren's for a bead bracelet. Kudos to her for coming up with that idea.
KDi in TX
Posted by KimberlyDi on December 5, 2003, at 17:00:39
In reply to Re: Validated by a Med ID Bracelet? » KimberlyDi, posted by Dinah on December 5, 2003, at 12:03:49
she sells charms with the Medical Alert symbol on one side and you can have anything engraved on the other. So I would possibly buy 1 bracelet and 2 charms (one w/Effexor and one w/Imipramine).
Neato
Expensive for a gold charm though, about $49.00.
> I LOVE that idea! A meds charm bracelet. Maybe with the cute cartoon characters for the meds that have them. That way when a doc asks for our med regimen, we'd have them right at wrist. :)
Posted by loni on December 5, 2003, at 22:58:28
In reply to Re: Validated by a Med ID Bracelet?, posted by KimberlyDi on December 5, 2003, at 17:00:39
You know, I remember mine as being more than I wanted to spend. And then my husband said something very wise,
"How much do you pay a therapist for one visit to feel validated? Do you walk out with a daily reminder to be good to yourself?"
Hmmm. No. I spent the money.
Since the MedID symbol is attached with clasps, you can easily string more beaded bracelets to swap out with your new one. :) Have a few different types to match your "moods". We could have our own mood bracelet revolution! Or, is that the 70's child in me talking out of turn again?
Beads are less expensive if you string them yourself :) Stone, ivory, plastic smiley faces, crystal, silver ones from India...so many options! And I don't think that only those on MAOI's need to apply. I love the idea of the charms!
Posted by loni on December 5, 2003, at 23:01:34
In reply to Re: Validated by a Med ID Bracelet?, posted by KimberlyDi on December 5, 2003, at 17:00:39
And, Kimberly, I just thought of this one.
Why stop at a bracelet for the wrist? Charms as earrings? On necklaces? A seductive ANKLET?
Depressed people are allowed to occassionally feel sexy, right? ;) Maybe it isn't a Prozac side effect...maybe what everyone is missing is the Amazing Prozac Ankle Amulet!!!
Posted by jack smith on December 6, 2003, at 17:20:52
In reply to Validated by a Med ID Bracelet?, posted by loni on December 3, 2003, at 14:00:51
I found your post inspiring as well. But did I read correctly, seizures from Effexor W/D?? That sounds very extreme. Could you please provide more info, e.g., what dose? how quickly you stopped? when you had seizures? what docs said? etc., etc. . . . . It would be very useful.
JACK
Effexor 300, Lithium 300
Posted by loni on December 7, 2003, at 17:28:41
In reply to Seizures from Effexor Withdrawl?? » loni, posted by jack smith on December 6, 2003, at 17:20:52
Hi Jack--
I was tapering from a dosage of 375 and I had been on Effexor for three years. When I began the taper, I was dropping 75 at a time. I began feeling withdrawal symptoms right away but did not know that they were related to the Effexor. (There was no information available to my doctors that there WERE withdrawal effects related to Effexor.) At first, the doctors could not figure out what was wrong with me. I received blood tests, a CAT scan, we discussed Multiple Sclerosis. (Luckily, I am a writer and I kept a sort of diary when I was going through this...it helps me to remember.) I don't remember a lot of things, my husband would remember more. I remember passing out a few times in the house during the day and waking up on the floor with the dog licking my face. I didn't feel any pain or fear--I thought I was fainting and if I tried to fight it, I would stumble around sideways as if the whole world began slanting and I would crash into things and pass out anyway. I learned I couldn't cook unless I was using the microwave. I burned quite a few pots. Then, my husband was home during one of my episodes and caught me as I fell. When I came to, he was completely terrified (and this is a guy that does not rattle easily).
"What? What?" I asked him when I saw his face--that LOOK I remember!, "It's no big deal...it's vertigo. I'm okay. Are you okay?"
"Do you even feel that, what you're doing?" he asked me.
"Feel what?"
"Your eyes...they roll back in your head. And your head and arms and hands jerk around! Your legs... You are completely scaring me. Let's call the doctor."
Now I was the one who got scared. I didn't feel any of that movement when I just gave in to blacking out. It actually felt pretty peaceful except for whatever body part I hit on the way down.
So. That's it. The seizures stopped after my withdrawal was over. There was a week (maybe my third?) when I woke up with numbness on the left side of my body. But that passed within 48 hours (though it was mighty scary). I had already taken a low dose of Neurontin for sleep purposes and they upped that...I guess it also acts on seizures (?) So, who knows.
I haven't heard of many people at the extreme end of the spectrum as I was. When I figured out it might be connected to the Effexor, I did a lot of research on the Internet. That was back in May and June 2001. There is a lot more out there on Effexor these days than there was then.
Posted by shadows721 on December 7, 2003, at 20:05:34
In reply to Re: Seizures from Effexor Withdrawl??, posted by loni on December 7, 2003, at 17:28:41
I am so sorry that you had such an awful experience in withdrawing from Effexor. I am grateful to you and those who have shared their experience with it. It has helped me educate myself about these meds for depression.
I use to think that depression was a disease that not many shared in having. I was majorly wrong. When I started sharing that I had depression, I was astounded that so many were suffering with this illness as well. I wonder how many other illness are directly linked to depression.
I think it's a great idea to wear an identification bracelet. Since many of these medications cause acute withdrawal symptoms, it seems very reasonable to wear a bracelet. Who wants to deal with horrible withdrawal symptoms when they have been in an unexpected accident?
I started wearing an id bracelet after suffering from withdrawal from Klonopin. I realized from my horrid experience that I did not want that to happen again.
This is the end of the thread.
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