New bipolar member seeks answers and support!

I posted this on the new member forum, but figured I would get more feedback from this group. I'm new here and am looking for answers and support. I'm hoping someone can help because I'm feeling a little lost and confused...
It's been 4 years since I've been on meds for my bipolar disorder. I stopped taking them because I felt the side effects outweighed the good. I was hospitalized for lithium toxicity and seratonin syndrome. My thyroid was shot. I felt like my psychiatrist wasn't listening to me, I began to not trust her and I was taking medication after medication just to treat the side effects! Anyway, that was 4 years ago. I have been happy and in a really good place for years...until now.
I've suffered from migraines on and off over the years, but back in March they started changing to cluster like headaches (unilateral with stabbing pain behind the eye) They were unbearable! My doctor sent me to a neurologist and he put me on topamax. I've been on topamax before (off label use for my biploar) and I had success with it. This time around, I felt like the side effects ("stupamax" episodes more frequent, tingling in hands and feet, loss of appetite, change in food tastes, sleepiness, dizziness, changes in gait) were much harder to deal with than last time. Then, my fiance started noticing changes in me: irritability, mood swings and lack of sexual desire. I noticed but chalked it up to PMS and the new medications I was on. ( My neurologist also put me on Fioricet and Phenergan) The past two weeks (one being my "period week") I started noticing changes too: irrational bouts of anger, anxiety, crying jags for no good reason, sadness, lack of confidence at work, depression and even suicidal ideation. It's at this point that I took stock of what was going on in my life and couldn't think of a single trigger. I strongly suspected the Topamax. I have never been on it without an SSRI ( Zoloft, Celexa) and thought it may be triggering my bipolar. My neurologist suggested I reduce the dose from 100mg to 75 and "see how it goes" after a week. I didn't feel comfortable with that. I called my regular doctor and told the nurse what was going on. She told me I was "in a crisis" and needed to be seen in the ER. I tried to tell her that I was safe and that I was aware of my feelings ( I am at a place with my bipolar that I can and do ask for help when I feel I need it. It wasn't always like that.) I just needed to know what to do about the topamax. She was unhelpful. I decided to go off the Topamax completely. My decision. I did not need or want to be hospitalized again. I have a good support system in place. That was last Wed. Right now I have a headache ( I was having daily headaches along with the migraines) and have some "nervous energy." I feel like I could be cycling upwards...I don't know. Could the topamax trigger my bipolar? My fiance has read up on Bipolar, but has not seen me in the midst of it all. ( I have always been a rapid cycler, usually starting with a manic episode lasting a couple of days, followed by what I call "blah" days ( I don't really feel anything) followed by depression lasting an equal amount of days, followed by another couple of "blah" days and then back up to mania.) I'm scared and confused and angry! I'm HAPPY and content in my life!!! Why is this happening to me now?!

Hey there,

I don't have any answers for you. I am as we speak in depression and see no way out. I wish I had some happiness. Someone will come along and help you out, don't you worry. They are all a friendly bunch here. Good luck!

You should never cold turkey anything. Your supposed to go down a little (25mg maybe) at a time with a week or two inbetween to be safe. You might try taking 75 or 50 again with a doctors consent and wean yourself off slowly or get hospitalized so they can keep a closer eye out if you think the symptoms of withdrawal are not getting better. Try to think of thos as a struggle with the end goal of stability again. We will always have hiccups its part of life. I wish you luck!!

Thank you misslaura and confusedinomicon for the kind words and advice!

Whew.......you're a rapid cycling BPer going off meds cold turkey. I shudder at the thought (I'm a rapid cycler too) and am fearful that stopping your medication abruptly will throw you into complete chaos.

I also don't see where you are going to a psychiatrist now. Do you not think you should have one to manage your psych meds? Internists and neurologists aren't necessarily the best people to handle psychiatric disorders; think of it this way---would you want your plumber to fix your leaky bladder, or your lawyer to discuss end-of-life medical care decisions? Sure, they know a lot about their own specialties, but they can't help you with things that are outside their scope of practice. Even my internist, who's about as arrogant as they come, knows better than to try treating my bipolar disorder......he realizes he's in over his head on this one!

Frankly, any medication can trigger anything. I don't know if the Topamax is exacerbating your BP, but it's certainly possible.......not likely, but possible. You need to get to a doctor who's qualified to deal with the complexities of BP and other psychiatric illnesses, if you don't have one already. Good luck to you.

Thanks BipolaRNurse! I know I should have a psychiatrist, but I REALLY don't want to be on any meds for my BP. I have been feeling good so far this week, so maybe the Topamax has left my system. I haven't felt like I'm manic and the irritability and weepiness and depression has lifted, so maybe what I was experiencing was just a combination of things (it was my period week AND I am hypothyroid AND I wasn't sleeping well- I work nights) I know if I do start cycling again I will have to do something. Finding the right psychiatrist isn't easy though...
Anyway, I appreciate your advice! Thank you!!

You're welcome. I wish you the best, and hope you are one of the relative few BPers who can manage w/o meds.

I really feel for you. About 10 years ago I had daily cluster headaches for 8 months. The pain is unlike anything else. The drug I took back then was sansert. I don't know if it's still around but it was a life saver.

I love your signature BipolaRNurse. It is so true.