medication help~ more negative side effects and the cycle seems endless

Discussion in 'General Parenting' started by Lynn34, Jul 31, 2017.

  1. Lynn34

    Lynn34 New Member

    I have a 18 year old daughter. She has rapid cycling mood disorder. May or may not be bipolar because cycles are very short but very often. She was just placed on lamictal after last hospitalization. ( taken to hospital by police, totally out of control)
    She now has developed extreme sun sensitivity and can't stop eating. She wants to stop her medications. Here goes the crappy cycle. We have tried so many medications but always the side effects were horrible. Has anyone found a good way to deal with mood disorder without the medications or at least the horrible side effects?

    I feel so trapped.
    Thank you
     
  2. JRC

    JRC Active Member

    Hi Lynn-

    I'm so sorry for your daughter's mood difficulties and the impact it is having on your family. And I'm so sorry you feel trapped. I have felt that way too.

    My son (almost 12) takes Lamictal (along with Risperdal and Abilify). Lamictal needs to be titrated up very slowly or there can be side effects, including a serious rash that can be very dangerous. That said, I've never heard of sun sensitivity as one of the symptoms. But if she is developing skin issues your should contact the doctor right away in case this isn't sun sensitivity but Stevens-Johnson Syndrome. In fact, it's very important that you do so because it can be life threatening.

    As far as managing bipolar disorder (or any mood disorder) without medications, I'm sure people do it, but I don't presently know anyone who is doing so without first being stablized on medication for a long time before trying to slowly see if they can be stable without it.

    I don't know anything about your daughter's diagnosis, but I can tell you that rapid cycling of moods is a hallmark of juvenile onset bipolar disorder. It's very hard to treat but not impossible. My son is currently stable on his medications but it took about a year of slowly increasing the medicines and then adding some to get him to stabilize.

    Best wishes to you and hugs.
     
  3. Lynn34

    Lynn34 New Member

    Thank you. It just seems every medication creates a worse side effect and then she wants to give up -hopelessness.
    She gets peace from surfing and I am afraid what will happen if that is gone too. Her body does not handle the medications well. And she is so obsessed with weight gain. She lives on the beach in a bikini (literally)
    It is so hard to see your child suffer. Thank you for your kindness. I can't handle her on medications and off medications is even worse.
     
  4. JRC

    JRC Active Member

    My son gained weight when we increased the risperdal this past May. 20 lbs! Alot for a little boy. But he's lost some of it through growth and exercise. Lamictal doesn't seem to have that effect on him though.

    Has her psychiatrist (psychiatrist) given her a diagnosis other than "mood disorder?" I ask because knowing what kind of disorder she has makes all the difference with what kind of medication she could be taking. If she's depressed, SSRIs (i.e. Zoloft) can help, but if she's bipolar, SSRIs can make her manic. I'm so sorry that you are going through this. Did it just start recently (meaning, within the year?). It can take a while to get the combination right. It's frustrating and scary.
     
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I have a mood disorder. It took me over ten years to find an anti depressant that works nearly 100%. I was tried on a few mood stabilizers before I found this antidepressant but hated how hungry they made me, how dull they made me feel and the side effects. I dont really feel my bipolar diagnosis was correct and dont feel I needed a mood stabilizer, which is good because I would not have taken any mood stabilizer. I dont believe if you really have bipolar 1 (psychotic mania with depression) it can be controlled without medication. But like all psychiatric diagnosis, because there is no way to know for sure if a diagnosis is correct, it is often misdiagnosed.

    Mood disorder not otherwise specified, which is way less severe, is often misdiagnosed as bipolar. And I am not sure that unless you get way manic that a mood stabilizer is a good idea. All of them also cause weight gain and extreme hunger. They also can make you feel very flat. It isnt fun. I felt worse pn them and finally said no more.

    I would encourage her to get a second opinion about her diagnosis and medications. There are no blood tests to prove any psychiatric diagnoses so they are just the psychiatrists opinion. You can go to ten different ones and get ten different diagnosis. It can take time to find the right medications AND a sensible diagnosis that truly fits.

    Does your daughter get psychotic when she gets high? Does she have very high moods? I never did. You have to be careful with a diagnoses.

    At any rate, you cant force anyone to take specific medication. I am sorry she struggles. Does she take any recreational drugs?
     
    Last edited: Jul 31, 2017
  6. Lynn34

    Lynn34 New Member

    No. It has been going on for 4 years. Started with depression and the Zoloft made for crazy times. Her diagnosis is bipolar but she really doesn't present like a typical bipolar. Her moods are very rapid lasting hours but when they are there she is out of control. I had to move out of family home with her because it was too hard I her sister. New psychiatrist wants to explore ptsd more. I just want to breathe and not walk on egg shells.
    I pray, I chant, I meditate. I need hope.
     
  7. Lynn34

    Lynn34 New Member

    Interesting....she doesn't getpychotic when high. She doesn't smoke much anymore. Is afraid it will develop into something worse. She is never extreme manic-not sleeping for days etc.
    Stress is a big culprit. And the side effects, like can't stop eating, wind up the stress.
    I know this is her journey but I feel so trapped in this space. I know this moment will pass and good moments are around the corner but this constant not knowing what the mood is is horrible. My life is on hold. I don't want to have a pity party in my head but it is sometimes so hard to hold on. You just want it over one way or another.
    psychiatrist just texted me asking about depokote. Ugggh. Here we go again. Any insights? Thank you so much for your kindness and understanding
     
  8. JRC

    JRC Active Member

    Oh gosh. Four years is a long time to deal with the chaos. I'm so sorry. And to have to move out is just so sad and so hard. But it happens.

    I didn't realize this recent doctor diagnosis her with bipolar. Bipolar 1 or 2? Has s/he said? I also go to a site for people with bipolar disorder who are adults (I don't have bipolar but I do have depression). I've gotten a lot of really great insight from the people on this site about what my child is going through and how different medications impact people differently. Some people do great on Lamictal, some depokote, some lithium. It really is trial and error. There are some younger adults there (college students) who post. I'm happy to share the web address if you'd like to lurk there or join. Just let me know. But they are very savvy and empathetic about what they call the "medication-go-round."
     
  9. Lynn34

    Lynn34 New Member

    Yes please post website. I am always looking for an answer
    Thank you
     
  10. ksm

    ksm Well-Known Member

    Has her doctor ever checked into DNA testing to find what medications she can best metabolize? Some insurance pays for testing. Check first.

    I found out my Difficult Child didn't have a specific enzyme for some medications...and twice as many of one enzyme so she metabolized it too fast and it didn't stay in system long enough to help.

    Our report had 3 lists of medications to try...one that was recommended, and the other lists to use with caution or extreme caution.

    Ksm
     
  11. JRC

    JRC Active Member

  12. Lynn34

    Lynn34 New Member

    Thank you for your reply. Yes D.C. had the genome test. ($1500 ) that help a lot but even on medications with green checks it doesn't account for the side effects. I wish there was a medication to Take as needed when a cycle is starting.
    Thank you again for your kindness
     
  13. JRC

    JRC Active Member

    Lynn this is my son's medication protocol info if it helps you:

    Daily 300mg Lamictal, 17.5 Abilify, 1mg Risperdal (split in half, morning and night). Then he takes PRN up to 1mg of Risperdal if we see an agitated depression/manic state emerging. What the doctors have told us is that the more episodes of mania/mixed states he has, the more he will have (if that makes sense). And, the instances of mania lead to the depressive states. So, it's a vicious cycle. Their opinion (based on studies, not on guessing) is that knocking back the manic states as quickly as possible (and of course trying to prevent them with PRN medications) will lessen incidents of all mood dysregulation.

    To give you some hope: this morning as my son was taking his medication he said to me "mom the medication seems to be really working lately. Like I'm taking the right amount." I can't tell you what a big deal that is. And he's eleven years old. If he's thinking about it everyday and noticing, I can't imagine what your 18 year old daughter must be going through. It took since January of 2016 to get that kind of response mostly because we had to go up so slowly with the amount of Lamictal but also because his first doctor wasn't aggressive enough with the antipsychotics.

    There are side effects like we've talked about but he is now able to show up for life, basically. I really wish you and your daughter the best.
     
  14. Lynn34

    Lynn34 New Member

    Thank you. I am happy that your son has found the right cocktail. So far everything we have tried has taken away everything she loves in life. She sees it as a hopeless mess. Last night, with skin crawling, she talked about death again. I am with her all the time. I took leave from work. The cycles were violent without medication and the sadness is horrible on medication.
    Each of the medications your son is on she tried.
    I feel I am on the edge of the dark hole again.
    I really can't handle much more. This has consumed me.
    We are running out of medications to try. Ugggh
    I am afraid to face tomorrow.
     
  15. JRC

    JRC Active Member

    I am so so sorry. I do know your despair. I really do. I also had to quit my job. A few months ago I felt that there was no solution. That the medications were either not enough or just not working. The school was telling us that they couldn't educate him. His depression was horrible. I saw no solution. The future seemed like a terrible place and the present was unbearable. What changed? It could be the increased medications. His growing brain. The change in season (bipolarity is seasonally linked). But we are having a respite. I fully expect that with his growing body and seasonal changes in the fall, we may be back to where we were just a few months ago. But I'm crossing my fingers that it will at least last for longer than a few months.

    Do you have a therapist for you? If you don't please do find one. And please find a way--any way--to get a break. People told me this too and I just couldn't do it. But it really does help. I'll be thinking about you. ((hugs))