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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 12 of 12. This is the beginning of the thread.
Posted by Catherine Sheel on May 9, 2006, at 11:11:38
I've read posts regarding wellbutrin and pitting edema; I've had pitting edema (15-20 lbs for 4 months, and then about 5 lbs. of water weight 2 months previously) and been on 300 mg Wellbutrin twice daily for the past 4 years so I went off my Wellbutrin 8 days ago.(I'm also on 125 mg. Topamax BID to supplement the Wellbutrin and Bactim DS every day or eod for acne).
From what I've read...most people have found that their edema resolved within two days or so. Mine has not. I'm on diuretics (many different types, and they help, and then they don't...)...so, I'd have to say -- so far, the edema has not resolved from the discontinuation of the Wellbutrin. Now, granted, it appears that it takes me a long time to clear drugs. (I went off my Mirapex for my Restless Leg Syndrome, and it took 3 weeks to see the effects of the side effects go away).
I'm writing because I feel really, really desperate at this point...what else can I do????? I've gone to my GP -- who is clueless (she even misread my normal thyroid as bordeline low). I've gone to a speciality clinic in Santa Barbara where all my labwork is normal (renal funtion, liver funtion, urinalyis, electrolytes, cortisol...). But that day....my blood pressure was 90/48 (a week off diuretics)...this isn't normal, is it???? The cardiac ultrasound and abdominal CT are pending...but i can't imagine they're abnormal...I'm 37 years old, I run 6 miles a day (when my muscles don't hurt from the edema)...my physical exam was normal...i just don't think i have heart disease or an abdominal tumor...(but i guess I could be wrong...we'll see).
I tell my therapist, my psychiatrist, my internist about the wellbutrin and the possibility of it causing the edema (I also get night rashes)...and they just shrug. Is it the topamax? I can't find anything related to the edema and topamax...so I've left that the same. I don't want to change too many things, you know?
I feel helpless, trapped in this wierd baloon-animal body that is completely out of my control, I feel like no doctor really cares about me or knows what is going on or even wants to know what's going on. I'm scared. I don't want to live my life like this. My clothes and shoes don't even fit. I hurt all over. I can't even do repetitive things like stir...my arms begin to hurt. Sometimes i think it will be ok...when I lose a few lbs. of water weight...but then literally 3 hours later -- i'll gain like 5-7 lbs of water weight back, and I swear! I think I'm going to lose my mind.
Please, please give me some hope!
-c
Posted by Catherine Sheel on May 11, 2006, at 17:18:06
In reply to wellbturin and pitting edema, posted by Catherine Sheel on May 9, 2006, at 11:11:38
(See previous post....I spelled Wellbutrin "wellbturin"...not sure if this matters or not...)
I got a call back from my doctor ... she said all my tests are normal. But she also said she didn't have an answer to my edema problem.
She did tell me to go off all my diuretics...said she was afraid they'd mess with my electrolytes and my fluid/body system even more. This I understand.
But this doesn't help my 20 lb. water gain problem. And when I asked her where to go for help..she couldn't tell me where to go.
So, where do I go? Who do I go to? I'm completely losing my marbles. I feel like no one is helping me or wants to. My therapist is wonderful and kind...but she can't help me as she just doesn't know what's going on either. My pdoc is clueless.
I've been off WB for 10 days now...is that not enough? Or does is just take the body a long time to equilibrate after having edema for this long (4-6 months)?
I also went off my Topamax...just in case. But being off all my antidepressants...this can't be good, you know?
I feel hopeless, desperate, lost, alone.
Can't someone help me or at least tell me where MAYBE i can go for help?
-c
Posted by Lithia on May 13, 2006, at 10:56:31
In reply to wellbturin and pitting edema, posted by Catherine Sheel on May 9, 2006, at 11:11:38
I can't really give you any hope, but sister I am in the SAME BOAT!!!! I am swollen and lumpy like a beached whale, suspectedly from 1 month on divalproate. I am also feeling desperate for a solution. Read my post about med reaction swelling.
I wish I could take diuretics, but I am on lithium now and they can be harmful. It sounds like you are in good shape, being a runner. I am overweight, so I am going to just try and diet and hope that some of the fluid and swelling will go down with the weightloss.
Please keep posting if you find any answers.
Lithia
Posted by SLS on May 13, 2006, at 11:38:52
In reply to Re: wellbturin and pitting edema, posted by Lithia on May 13, 2006, at 10:56:31
> I wish I could take diuretics, but I am on lithium now and they can be harmful.
You might be able to add a diuretic if you establish a consistent dosage and adjust the lithium as dictated by blood tests.
How much lithium are you taking?
- Scott
Posted by Lithia on May 13, 2006, at 12:22:13
In reply to Re: wellbturin and pitting edema, posted by SLS on May 13, 2006, at 11:38:52
Hey Scott,
I take 900 mg, but I have only just started so I don't think my pdoc would approve at this time. He wants me to just tough this thing out. :(
Lithia
Posted by Catherine Sheel on May 13, 2006, at 13:44:52
In reply to Re: wellbturin and pitting edema, posted by Lithia on May 13, 2006, at 12:22:13
well, i went back on my wb and topamax...it just didn't seem to be a problem. But i did find a very interesting paper on Diagnose-me.com (it's an interesting site anyway, and you might want to visit it). Apparently, there's a condition called "idiopathic cyclic edema" that's an uncommon condition in premenopausal women. It's due to low progesterone and possibly estrogen excess. Sometimes it responds well to just a simple treatment of progesterone...sometimes not. Captopril (an ace inhibitor) and ginkgo biloba (to improve the leakiness of the vessels) can also help ... but diuretics usually muck up the situation and are contraindicated. On an aside, this paper states that reproductive disorders are on the rise bec. plastics, PCBs, pesticides are estrogen mimics...sit in the estrogen receptors in our body and totally mess with our hormonal balance. And it doesn't just affect women...From 1938 to 1990, sperm count has decreased 50%.
Hope that info helps.
-c
Posted by Lithia on May 13, 2006, at 15:00:33
In reply to Re: wellbturin and pitting edema, posted by Catherine Sheel on May 13, 2006, at 13:44:52
Hi Catherine,
I also read about "idiopathic cyclic edema", and was wondering about that too. It sounds like it's a bit of a mysterious condition though. Considering the fact that divalproate has hormonal effects on women I am wondering if this syndrome may have bee triggered by the meds in my case.
Lithia
Posted by Catherine Sheel on May 13, 2006, at 15:37:47
In reply to Re: wellbturin and pitting edema, posted by Lithia on May 13, 2006, at 15:00:33
RE: it being a mysterious condition...it depends where you find information on it. I have found sites with TONS of information on it...and then i've found sites with minimal information on it. I've found sites where they talk a lot about herbal supplements to regulate your hormones (chaste tree berry, SAM-e, natural progesterone creams, DIM/I3C, Evening Primrose Oil), the role that melatonin, stress, and food can play in all of it. And then I've found other sites where they sound totally mystified and say all you can do is decrease your salt intake and lie down several hours a day. It appears that a Dr. John R. Lee, MD has done a lot of good research on this. And I found most my information on diagnose-me.com. A very easy test to do would be to test your hormone levels at the PROPER times within your cycle..so you'd want to make sure you were going to a knowledgeable doctor before you got your progesterone/estrogen checked...or at least did some research on your own first.
Hate to sound like a "pinko commie" but I sort of think the traditional medical community is male-dominated (even if there are tons of women doctors) as well as pharmaceutically driven.
This site diagnose-me.com is interesting, and you might want to check it out.
-c
Posted by Lithia on May 13, 2006, at 16:30:02
In reply to Re: wellbturin and pitting edema, posted by Catherine Sheel on May 13, 2006, at 15:37:47
Catherine, has you doc determined that this is the cause of your edema indefinitely?
I've been reading more about it too and it sounds like there is alot of evidence that gingko is beneficial.
I plan to see my GP about this once I receive the clear on my bloodwork done yesterday. She is a woman and will be more open to exploring potential hormonal causes.
Lithia
Posted by Catherine Sheel on May 13, 2006, at 16:36:54
In reply to Re: wellbturin and pitting edema, posted by Lithia on May 13, 2006, at 16:30:02
i stopped going to my internist bec. she blew me off. I talked to my therapist and she's intrigued and referred me to a holistic doctor. I have an appt. June 6. I just need someone to check my hormone levels. Yes, you're right...G. Biloba. Started that yesterday. Thanks. -C
Ps..if I repeat myself or forget things...excuse me .. i have another post going on another site! I think that's why i forgot to mention the G. Biloba
Posted by Lithia on May 14, 2006, at 7:00:43
In reply to Re: wellbturin and pitting edema, posted by Catherine Sheel on May 13, 2006, at 16:36:54
Actually I checked back and you did mention it first. Sorry, I have lithium brain. :P
I am also planning to go to an alternative doctor, a chinese doctor specializing in herbs, shiatsu and acupuncture. I have to be careful with certain herbs with lithium though, but from what I have managed to research, gingko should be fine.
I feel like I am being blown off as well, like oh she's crazy and exaggerating these symptoms. Truth is I am practically immobile do to the swollen mass on my leg. The fluid build up in my upper left leg is causing numbness and circulatory problems with my lower leg and foot.
Good luck Catherine. Please post how the treatment goes.
Lithia
Posted by Catherine Sheel on May 14, 2006, at 12:05:38
In reply to Re: wellbturin and pitting edema, posted by Lithia on May 14, 2006, at 7:00:43
L -- I'm sorry about your edema. It IS painful. And it messes with your head, your image of yourself, you feel trapped in this body that isn't yours, your body feels out of control. I mean we already have a mind that doesn't feel is quite ours...and now to have a body that isn't ours too...
I tried to find the CAUSE of the edema (ie, the mechanism of action of edema with depakote) but i'm having a hard time. Ginkgo biloba only works with edema bec. it makes the blood vessels less leaky. And unless you think you're having a hormonal thing like me...it might not help. But i agree, I don't think it will hurt. I wonder if you're just salt overloaded between the Lithium which is a salt and the depakote which is has sodium tacked on the end of its name. I'm not saying decrease your salt...i find that impossible...and maybe your body has so much that you could decrease your salt to zero and it wouldn't make a speck of difference. I guess you could try it for a couple days or so. If you can be so diligent...you'll find out there's absolutely nothing to eat that's worth eating. It means you have to become Betty Homemaker because everything in the store has salt.
Good luck with your alternative doctor. It's hard to find one that will work with your current meds...who will be understanding of the fact that you have to be on those. I found my acupuncturist through a college of acupuncture ...so I felt confident he was good. He was a professor there. However, I couldn't drive all the way to Santa Barbara...and i couldn't afford to go to acupuncture all the time. But I really liked it. This alternative, naturopath in my town...is someone different.
I think you have more patience than me. I was on Lithium for almost a month, gained weight and bloated (this was 2 years ago) and bailed on it. I think my pdoc hates me...I never stick with her plans. But then I'm a veterinarian and pretty much know what's going on medically...sometimes I can't always access their stuff. But I try as much as I can. But I think it helps me feel more confident to tell them yes and no sometimes. Although, clearly I've felt patronized and blown off by doctors all the time. And actually, the medical community probably thinks vets are idiots when what i'm finding is that we're a whole lot more thorough then they are. My GP did her 2 minute exam with my clothes on...no gown. You know...I ALWAYS made the clients take those little sweaters off their chihuahuas!
-C
This is the end of the thread.
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