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Complete Hair Loss, Memory Loss & Anger with Lithium & Lamotragine (Lamicel)
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TrulyMadlyDeeplySadly posted:
I was diagnosed with B1 and was put on both Lithium 900g and Lamotragine 400g per day. Initially I think the Lithium did help but I was vomiting for 3-4 hour spans per day (retching every five minutes) so they dropped the Lithium to 600g, I am still sick after 4 months, I take 6 gravol a day to try to keep me from throwing up and I noticed that my hair falling out at an alarming rate. At first the Doctor would not even acknowledge that hair loss could happen as it wasn't in his "blue book" as a side effect which he happily read aloud to me to prove it was "all in my head".

So, I took pictures of my hair/scalp and after 2 months brought them into him, and both him and my Case Worker agreed I was indeed loosing alot of hair. He took me off the Lamotragine. Here's the kicker, my hair is still falling out and in addition I am losing hair other places where it would normally grow ie underarms/legs etc. There is absolutely no growth just baldness. You can also see visible huge patches of no hair on my scalp.

I also have lost my memory to a very disturbing point. I can't remember what happens 3 hours earlier in a day. I'm trying so hard to work and my job has a ton of pressure attached to it. I'm scared, I can't even recall how I get to work or get home. I had to stop driving because I feel as though I am not paying attention. i feel always drunk-like or stoned state. My levels in the blood are within norms so I'm not seeing that I am toxic per say.

Lastly, I have an intense amount of rage inside me. This is not normal for me at all, I've never, ever felt like this. I get enraged at small things, like the sound of someone eating with their mouth open, it used to be tolerable although annoying, but now well I just explode with anger. It seems related to noises mostly and I feel like I'm overreacting but can't help it.

What is happening to me!!!???? I've never been sick, I eat way way super healthy, drink extreme amounts of water, take supplements. I should say that I am no spring chicken but this seems to be catapulting me into an age of complete digression.

Any thoughts? And PS Thanks for listening, I haven't had anyone to confide in.
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ddnos responded:
Wow, that does sound scary! It sounds like you have been on your meds just a short time - maybe 6 months? or has it been longer? Were you on other meds before what you are currently on? One more med question lol...so you are currently just on lithium, correct? You are still getting sick?

Though it's hard, because I don't know all the details or your situation, but my first thought - based only on what you said here - the first thing I would do is find another doctor for a second opinion. It doesn't sound to me like your current doctor is taking you very seriously - especially given the nature of the reactions you are having. You should NOT have had to go as long as you have being sick and losing hair (especially the being sick part) and significant memory loss...he should have been on that much sooner than now and even now, what is he doing? Has he ordered any tests? DOes he plan to do anything with your meds? Is he maybe sending you to a specialist of some sort? What is he currently doing to help? Granted, I know that he can't wave his magic wand and make you all better, but I know from experience, that they need to be doing something when things are going so wrong like this!

I would write in list form all of the symptoms you have had, and approx when they started, how much they are interferring with your life, etc., and take it to him and let him know that you expect him to do something to help you, and that if he doens't, you're going somewhere else. Be in charge of your own health. Sometimes even good doctors don't do so good when they have so many clients - so we sometimes have to just put our foot down and wave our arms and say, "HEY! I need your attention here! My life is going down the tubes and you're just watching it happen!" (not those exact words, of course lol) But you know what I mean?

It's your body, and sometimes you have to be the squeeky wheel to get the help and treatment we need - even if that means we are annoying to them at times. I've had my share of being annoying - but I've also got things done for my health.

So, I'm truly sorry that you are and have been going through this, but now it's time to make some noise (with respect and dignity) and if need be, seriously consider changing doctors!

Good luck
Debbie
Forgiveness is letting go of the hope that the past could have been any different --Unknown
 
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TrulyMadlyDeeplySadly replied to ddnos's response:
Thanks so much for this reply!. I've been on the medication straight for about 6 months. I never experienced any related issues prior to this so this is why I am linking it. The pdoc orders standard blood tests, lithium levels etc. And they can't see anything abnormal.

The Pdocs here are very weird specifically in British Columbia, Canada, you have to be referred to them, you can't refer yourself and here's a kicker, my own family physician of 8 years suddenly decided that he was upset with me because I went to a walk-in clinic for a tooth abscess on a Sunday (his office wasn't even opened) and for that, he says "your the type of patient who irritates doctors and I won't treat you for anything you saw that other doctor for". He said I should find another doctor, which in my country, province and city, there aren't any. You get punished from going to walk in clinics. Even if you do it once. He advised me to find another doctor. I find this strange that he tossed me as a patient right after I was diagnosed with the Bipolar Disorder.

In Briitsh Columbia it's near impossible to find a regular Dr. There's a list and one of the DR's who is taking patients has a "condition" on his license, I looked him up - he was convicted of sexual misconduct against female patents. So def. not going to go to him.

The pdoc here and my case worker only do 2 things . they give me RX's for the meds and they refer me to websites to read about B1. The case worker only gives me some telephone numbers or addresses for food bank etc, other than that, they do nothing else.

Here there is no counseling unless you can afford it $175 per hour and up. People say "go join a group" but I am not able to open up in front of strangers, I tried group therapy and had to leave because it enraged me so much, I didn't want to hear about other peoples problems, I have to do that for work all day long, I am not the type of person who has the luxury of being able to open up to strangers face-to-face.

Anyways, that's enough of that!
 
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ddnos replied to TrulyMadlyDeeplySadly's response:
Wow! That's horrible! Ever consider moving out of BC? lol Seriously! You certainly aren't getting the care that you need, and like you said, unless you become rich, it doesn't sound like you will. And your PCD saying he won't treat you anymore because you went to a walk in clinic for an absess?? WTH??? That is so all kinds of wrong!

Are you still getting sick on lithium? I know that some people do initially, but not this long! Just because your lithium blood levels are normal doesn't automatically mean you can take that med! Sheeeeeeesh! Even I know that! I have been on lithium for 22 years and it's never bothered me, but if it did and I was sick like that for even a week, I'd of told my doctor I'm not taking this stuff and find something else! That's rediculous for the doctor to just say your blood levels are fine so therefore, the medication is fine??? Grrrrrrrrrrrr! I'm getting ticked off for you! Tell HIM to take the medication and try being sick for 4 months and see how he likes it and if HE would stay on it! I have no doubt that he wouldn't!

I still say your next appt with him that you put your foot down and say that you're not going to take lithium any longer (if it's still making you sick) and to try something else. You shouldn't have to put up with that! You don't want to just go off lithium cold turkey or you will for sure regret that, but ask him how you should wean off it. I went off it briefly (because I kept putting off picking up my refill lol) and I didn't get sick physically, but I was flying like a kite and drove myself and everyone around me crazy. lol

Anyway, I'm really sorry for your situation and wish there were something I could say or suggest you do to help, but I don't know the laws in BC and how things work, so would have no idea where to steer you that might help. Darn!

Debbie
Forgiveness is letting go of the hope that the past could have been any different --Unknown
 
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TrulyMadlyDeeplySadly replied to ddnos's response:
You're awesome and so caring! I really appreciate this. It's funny because my Mom was B1 her whole life, growing up in the 20-s to the very end, she had a rough life. Specifically being ostracized by neighbors, being abandoned and so I basically grew up raising her, She went off her meds like clockwork every year so I got used to the routine and hospitalizations. She was a brilliant genius intellectually and sweet. So here I am at fifty and being diagnosed after a terrible, terrible last 2 years (multiple deaths, loss of home, loss of job etc blah blah blah). I am sick every single day, if I don't take gravol I do constantly get nausea and I do throw up. I ensure I eat complete, filling meals when I take my medication. I agree that the mentality of the pdoc here is carte blanche on that if the levels are within range then you must be fine.

I would love to leave BC. I was born here but there is nothing left for me. Unfortunately, although I have a job, I don't have any income to try to move otherwise I would in a heartbeat. Currently working on not being homeless so that's got its own struggles. I am grateful for the shelters I can get into if they have room. It's weird, I never thought I would be in the condition I am in. But here I am. And I guess that's okay too. Hugs.
 
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TrulyMadlyDeeplySadly replied to TrulyMadlyDeeplySadly's response:
BTW. I'm getting tired of my own babble. So I will take your advice and push for something else although I am a little afraid to tell them as I think they will try to commit me if I tell them I won't take the medication and want something else. Can't hurt to try! You were great to take the time to give me help. Greatly appreciate it.
 
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ddnos replied to TrulyMadlyDeeplySadly's response:
If you're afraid they will try to commit you - just be careful how you tell them what you want....you know how one could say the same thing but with a different tone, and it's the tone that makes all the difference in the world. So by all means, don't go in there and get all in his face <lol> ect. but share what's going on and your frustration,ect., very calmly....you definitely don't want to go in and end up making things worse for youself. If he's not willing to work with you to change your meds so you're not sick all the time, you don't have to tell him that you're not going to take them - wean off of them yourself, but don't throw them away in case you need to go back on them due to any possible reaction to going off, you know? Just don't discontinue them abruptly. HOpefully, this won't be an issue and he'll agree to try something else. Just make sure that he knows exactly how bad it is and that you can't endure the nausea and being sick day in and day out. If he doesn't comply to that, maybe there's someone you could talk to (without telling him) This just isn't right.
Forgiveness is letting go of the hope that the past could have been any different --Unknown


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