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I want off Lithium. The effect on my bowels and bladder has become intolerable. I've mentioned these side effects to pdoc, but he doesn't seem concerned.

I spent 2 hours this morning in the bathroom. This is a regular occurrance. I can't sleep through the night anymore either because I have to go to the bathroom. I'm not toxic. It's just the way my body reacts to lithium. If I "forget" to take it, I don't have this problem and I feel a million times better.

How pissed off do you think he will be if I quit now and explain my case when I see him at the end of the month? I'm completely fed up. Done.

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i feel bad for u cause im in a similar situation... these fuckin drs expect us to do what they say and not change anything between appointments... even if we're in terrible condition from it.

i say call ur dr, and tell him the gastroentestinal problems are making ur life unmanageable. gl

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Last taken it was only .6, so lowering it wouldn't even be in the therapeutic range. I have tried taking 600 mg and it's still a problem.

I'm really fed up with it. In the summer I thought it was the heat making me sick. Now it's cold, so it's just the Lithium.

I think if I continue titrating up on Lamictal, I can live without Lithium. I won't go manic on the remaining meds I am taking.

My biggest fear is the reaction my pdoc will have to my quitting.

i feel bad for u cause im in a similar situation... these fuckin drs expect us to do what they say and not change anything between appointments... even if we're in terrible condition from it.

i say call ur dr, and tell him the gastroentestinal problems are making ur life unmanageable. gl

You're right. I should call, but I really don't want to. I'm terrified of this man for some reason.

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You're right. I should call, but I really don't want to. I'm terrified of this man for some reason.

Then do something that my anxious mind would do-- call him at night when you know for sure he wont answer. and uh dont leave ur phone number, and dont answer the phone if he calls back. :)

just say 'i cant take the lithium, my ass hurts too much' ;) :embarassed:

i got off depakote partly for this reason... i had non stop bathroom usage for months. finally i said FUCK YOU, YOU MADE ME FAT AND IM NOT TAKING IT ANYMORE. then i proceeded to get very suicidal after the taper.

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You're right. I should call, but I really don't want to. I'm terrified of this man for some reason.

Then do something that my anxious mind would do-- call him at night when you know for sure he wont answer. and uh dont leave ur phone number, and dont answer the phone if he calls back. :)

just say 'i cant take the lithium, my ass hurts too much' ;) :embarassed:

i got off depakote partly for this reason... i had non stop bathroom usage for months. finally i said FUCK YOU, YOU MADE ME FAT AND IM NOT TAKING IT ANYMORE. then i proceeded to get very suicidal after the taper.

ROFLMAO!!! "Sorry doc, I've got the burning ring of fire."

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I see that you are taking the controlled release, which is good. People tend to have many more problems on the immediate release.

- Are you splitting your dose? Taking half in the morning half in the evening!

- Are you taking your dose with a meal? I have gone so far as to have the pill sitting next to my plate and down it half way thru the meal to provided as much food buffering as possible. I often do the same thing with my vitamins/fish oil.

You say its not toxicity effects, e.g. shakiness, etc, so I assume you are drinking 2 -3 Qts of water a day and keeping up your salt level.

Thats all I can think of. If 'n when you decide to drop lithium, try to taper over 2 - 3 weeks, rather than go cold turkey. Lithium has a tendency to cause rebound mania after a sudden cut off.

hope you feel better, a.m.

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If your pdoc "terrifies" you (that's an awfully strong term!) and he won't listen to you about these concerns, which are rather more than just an "ooo I gets the sore tummy this med sux" variety, than I would say ther's a serious communication issue and your treatment plan is shaky, and your stabilty and health are at risk. My doc always listens to my med concerns, and my physical health is paramount, and then my stability.

Anyways. I'm not sure you won't get manic without the lithium. That's not the particular point here; it would seem you can't handle it. You could certainly try going without it, and I'd hope your doc (or a new one!) would go with you on this. IMO, the less meds, the better. Certainly there are others besides lith.

As far as going off it without telling your doc, I will remain opinionless except to echo AM and say"titrate down" to be safe.

Good luck

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Thanks guys. I have tried dividing the dose to 3 x a day and it made a bit of a difference but it's still not tolerable. I drink a ton of water, over 2 litres a day and eat extra salt. I have been trying to ignore these symptoms or blame them on other things but I've had enough now.

LOL, yes "terrified" is a bit dramatic. I'm a bit of a drama queen. :embarassed:

He is one of the best pdocs in town. I am just very afraid to bring up side effects with him. When I had a reaction to Depakote he kept saying it wasn't the drug and I had ended up having to go to the ER. I just find him intimidating because I feel like he doesn't believe me when I mention side effects. I see him very infrequently now and and I am being referred back to my GP for maintenance and will be seeing him even less. There is a 10 month waiting list to find a new pdoc here.

Maybe I will try to stay on 600 until my appointment just so I don't come across as a difficult patient. It's bad enough that I have to bring up the akathisia I am getting from Seroquel, which I chickened out about last appointment.

Maybe I should email him with things we need to discuss before my appointment. Maybe I should even mention that I feel too nervous in person to bring up side effects after the Depakote fiasco.

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LOL, yes "terrified" is a bit dramatic. I'm a bit of a drama queen. :embarassed:

He is one of the best pdocs in town. I am just very afraid to bring up side effects with him. When I had a reaction to Depakote he kept saying it wasn't the drug and I had ended up having to go to the ER. I just find him intimidating because I feel like he doesn't believe me when I mention side effects.

Okay, first you are a drama queen, so am I, but there is a difference when real drama is going down. Your side effects to these meds is real drama, and seriously affecting not just your head but your other systems. I REMEMBER when you were sick on depakote and you were really fucking SICK! You were puking all the time, it was nasty. Fuck it if he's the best in town, kick 'em to the curb and get a new one. I know it's not *that* easy in Canada, or so it seems, from what ya'll say. But I'm with CNS on this one. Healthy all over and side effects are a very REAL part of dealing with and managing MI. It's why most of us stop taking meds, it's why a lot of us (me) won't start certain ones AT ALL, for fear of s/e's, and I don't mean just getting fat. I'm already there.

You should not be afraid of your pdoc. This just is not good. Totally unacceptable. ;) Makes me want to kick his ass.

Love,

S9

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Thanks S9, but I do know alot of this fear is my own problem. I fear authoritative personality types. This is an anxiety thing that has caused me to quit jobs in the past. A tdoc I saw a few times really clarified it for me and made me realize it stems from severe bullying in childhood (I know this may sound hokey, but I believe it to be true).

I think what I should do is, first of all get my meds sorted out with my existing pdoc, then talk to my GP about a referral to a female pdoc. It will take forever, but at least I can get on a waiting list. I know a woman can have that personality type as well, but in my experience it is less likely.

Meanwhile, I think emailing pdoc before my appt is the best way to ensure I will bring these things up and not chicken out. I don't think he needs his ass kicked at this point S9, but thanks anyways, LOL. Did I mention that he is about 12 feet tall? ;)

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Thanks guys. I have tried dividing the dose to 3 x a day and it made a bit of a difference but it's still not tolerable. I drink a ton of water, over 2 litres a day and eat extra salt.

Um...was that really meant to be "2 liters"? As in, your sum total water intake in a day?

I ask this, and want to be clear because you need to rather increase your water intake when on lith. For instance, on my info sheet (that I read for shits and giggles last time I filled the script), it says an additional 9-12 glasses of water a day, over the, what--8 8 ounce glasse, is it? And I've seen elsewhere, an extra 2-3 liters a day. (btw, a gallon=about 3.6 liters)

Good rule of thumb, IMO, is if you're on lith, no less than 3 liters a day, and a gallon is good. Me, while I'm at work (8-5), I probably down about a gallon in that time frame. Of course I'm also on topamax and have to be extra cautious with the ol' kidneys, so I have extra :issues"...

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You can move it there VE. I guess it is a confession, but I was looking for input as well.

CNS, actually I looked at my water bottles and I drink over 4 litres of water a day, not 2. Sheesh, that's alot of water. No wonder my bladder hurts.

I think I will stay on a low dose (600) until my appointment (only 2 weeks) because I just don't have the balls to call him and tell him I'm quitting.

Just skipping one day and the bladder urgency and pain is gone, bowel is less angry with me. Lithium just doesn't like me anymore. These problems have just slowly been escalating the longer I have been on it. I just hope that pdoc agrees that this is not quality living.

Thanks everybody for answering. Go ahead and move me now VE.

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Did I mention that he is about 12 feet tall? ;)

I call Bullshit! I know for a fact that he is only 11 feet tall.

Seriously Dee, Have you tried the single nighttime dose (right before bed)? Also it may it may help to get an electrolyte panel. Perhaps you have a case (mild?) of Hypokalemia?

Best of luck Dee.

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Did I mention that he is about 12 feet tall? ;)

I call Bullshit! I know for a fact that he is only 11 feet tall.

Seriously Dee, Have you tried the single nighttime dose (right before bed)? Also it may it may help to get an electrolyte panel. Perhaps you have a case (mild?) of Hypokalemia?

Best of luck Dee.

LOL, 11 feet tall. Seriously, his height so adds to the intimidation factor.

Yes I was doing the single nightime dose all along. I asked him if I could try dividing the dose last appt when I mentioned these side effects and he gave me the okay on that. From what I read, it can help with side effects, but it makes no difference. I've had these rotten side effects since day 1, but rather than improve as I hoped, they have just progressed. I really just want off it now. No tests.

Glen, you know him. How would he respond to an email? Is it appropriate?

Thanks,

Dee

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LOL, 11 feet tall. Seriously, his height so adds to the intimidation factor.

Yes I was doing the single nightime dose all along. I asked him if I could try dividing the dose last appt when I mentioned these side effects and he gave me the okay on that. From what I read, it can help with side effects, but it makes no difference. I've had these rotten side effects since day 1, but rather than improve as I hoped, they have just progressed. I really just want off it now. No tests.

Glen, you know him. How would he respond to an email? Is it appropriate?

Thanks,

Dee

The advantage of writing is that that it usually offers a clarity of thought that is sometimes not there during an appointment. He may not respond to an email but I would suggest doing so anyhow. Write down your thoughts and concerns, even your feelings that he may be downplaying your symptoms. Honesty is always the best policy. After you send it make a copy for yourself and print it off to bring to your next app. NB. though, email is not considered to be confidential.

In the good Dr.'s defence it is very common for patients to shop for meds based on side effect profiles and to have psychosomatic reactions (this is true for any condition). Add to that, his concern is your brain not your bowels so he will be placing a priority there. Also if you look at his research he has done a lot of work on the side effects of psych meds so his advice should be taken seriously, as of course so should your concerns. I am sure that together you will find the best course of action. You would be hard pressed to find someone more knowledgeable than him so speak your mind and benefit from his experience.

Best,

Glen

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Thanks Glen. I have emailed him and will print it out when I see him if he doesn't respond. That's a good idea. Of course now I am obsessively refreshing my email every five seconds, LOL.

I know he knows his medications, certainly more than any other pdoc I could find, and I admire him for all of the great research he's done.

My only problem is that he intimidates the hell out of me, which is kind of a big problem. I think in the long run, I would be more comfortable seeing a female pdoc for maintenance, if I can find one. Communication is essential.

Dee

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Hiya, Dee. I'm glad you emailed him. You might want to fax the exact same thing to him. That way, the office staff will probably put it on his desk, and he'll see it.

My pdoc doesn't have email for patients, so I always fax him, and he always calls me back the same evening. I'm pretty lucky in that he is very responsive.

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i had a pdoc once who didn't intimidate me, but he always scratched his beard and stared at me thoughtfully when we were talking. then he'd tell me his thoughts and i'd get a script or dose adjustment.

if you don't like him for any reason, get on the list and see someone else! you must have a good working relationship who listens to you, cares, and who you trust. it seems like you have none of the above in this case. yes, you trust him to know his meds, but no, you do not trust him to give a shit about you and how you feel. this is a complication! no wonder you want to go to your gp, who isn't qualified to handle your condition but at least won't be a total ass.

that being said, i am a TERRIBLE EVILDOER when it comes to my own meds. i used to adjust them myself all the time. that being said, it isn't a good idea to do any of that. get with your gp and explain the lithium situation. with a primary focus on the physical, your gp may be more caring about this and help ween you off of lithium. it is important that you have your gp/pdoc's thumbs-up and help in quitting lith.

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I'd hate to see you switch from somebody good to a mean woman. I switched to a woman and she was awful. I didn't request a woman, they just gave me who was available. I was glad she was a woman, maybe she would believe me more than my past pdoc. Not the case. She was so negative, uptight and unbelieving it triggered me to a weeklong episode. Thankfully I got a recommendation from somebody and will be seeing him Nov. 7. An eternity. I hope it's worth it.

So please really consider that decision and get a recommendation from somebody for a woman instead of just picking someone because they're female.

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If I do switch pdocs, I would have to get a recommendation/referral from my GP anyway. You can't make your own appts here in Canada.

Lemon, I really hope this new pdoc works out for you. You've had alot of tough breaks.

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  • 2 weeks later...

UPDATE: On the Lithium saga

I saw my (ex) pdoc today and although he feels my side effects are NOT related to Lithium (whatever), he agreed with my discontinuing it, YAY! :)

What's up with the denial of side effects which are KNOWN and on the PI sheet? Apparently I am "side effect sensitive" because of my "anxiety". ;)

He also dumped me today, so I am to see my GP for meds now. Suits me fine. She's finding me a new pdoc that I can see longterm. She doesn't feel comfortable managing my meds, which I can understand.

Lamictal wil be my main MS, titrating up to 200 mg. So far it's had a positive effect on my depression so I feel pretty confident that it will work out.

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He also dumped me today, so I am to see my GP for meds now.

What did he say? Wondering how they go about that. Did he try to squish you with his giant hands?

AHAHA, he was very professional. He just said he wouldn't be seeing me anymore and would be providing recommendations to my GP, who I would be seeing regularly from now on. I didn't bother asking why because I don't care.

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  • 1 month later...

I HATE to admit this. Physical side effects aside, I now realize how well Lithium was controlling my moods now that I am completely unstable.

I have had a change of heart. Lithium works like a charm and I would not be surprised if I end up restarting at a lower dose. *sigh*

Does it ever end?

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Nah - I was probably at my most stable on lith. Damn hr going down to 45 scares the shit out of me so I'll pass. Doc has brought it up to try it again, but fuck that. If my current massive cocktail doesn't do anything, and it better considering I am currently spending $100/month for copays not includnig docs, then whjo knows. I may just remove my brain and call it a day.

Remember, when you think you're at the end of your rope, tie a knot and hang on.

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anyone have other symptoms besides the instestinal? i feel like i'm about 95 years old- everything is stiff and sore and i am perpetually exhausted! how do people live like this???

mrs l

I didn't have any side effects like that, but I was taking Gabapentin with it which is also a chronic pain med. Maybe something like that would help you if Lithium is working for you otherwise? It might be worth at least asking.

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