I haven’t been on psych meds since the middle of Jan, so I have been dealing with audio hallucinations pretty much every day and my depression seems to be getting worse. I’m trying hard to not let it control me, but it’s not easy.
I was hoping that the Abilify they put me on last month was going to help me, but I suffered from one of its side effects and I had to stop taking it. I was bummed because, so far, it’s the only med that quiets the voices. The last few things my psychiatrist has had me try, I’ve had to stop because of side effects. I don’t seem to be having any success in finding meds that work for me and it’s getting frustrating because these meds help me with my schizoaffective disorder (schizophrenia with a mood disorder). I’m suffering when I don’t have to and it’s interfering with my daily life.
Last week, I saw my psychiatrist and he prescribed Lamotrigine which is a medication that people with epilepsy use. He told me about a very bad side effect that can happen where you can get blisters in your mouth. He said that he’s never seen it happen to his patients because the dose isn’t high enough. He’s only seen people with epilepsy and children suffer from it. He assured me that it was very rare.
If it’s THAT rare, why did he have to tell me about it?
The prescription is paid for and has been sitting at the pharmacy for a week now. I’m scared to start taking it and even tho the voices have been a pain, I just can’t bring myself to go pick it up. Most of the delusions I’ve experienced have had to do with my body, so just the idea that I can get blisters in my mouth messes with my head.
I know I need to be on meds and maybe this one will work, but I need help getting past the idea that I can have this bad side effect. Even tho I know that it’s rare, I’m terrified to start taking it.
Hi Friend,
I’m sorry that it’s been a struggle to find a medication that works and doesn’t give you harsh side effects. That’s so frustrating, right?
I can relate a lot to your post. I, too, struggle with anxiety around starting a new med because of the fear of side effects. When I was prescribed an adhd medication for the first time I researched the hell out of it. I was afraid to take it because I was scared of the side effects.
I think it’s important to remember that your doctor prescribes things for you when they think the benefits of the medication outweigh the risks. Doctors may be required to mention certain side effects. I know it can be super scary to hear some of those side effects. Have you talked with your doctor about your anxiety around trying new meds? I’m sure I’ve driven my doctor to the brink of considering early retirement because I ask way too many questions.
I hope that your anxiety will ease and that you’ll give your doctor some trust in their recommendation for a new med.
Rosie my sweet friend, I know this has been a real struggle for you in finding a med that works and you can tolerate. You have done so much work in therapy to improve your mental health. You have so much understanding about how your brain works and managing symptoms, retraining your brain. And now you need to treat the schizoaffective disorder and it’s scary. I’m sorry that the doctor needed to tell you about that one side effect, especially since it’s really, really unlikely to happen. But I can see why he would tell you about it since it’s a weird one. I know it makes you anxious, but please consider picking it up and trying it. It’s possible it could make all the difference in how you feel. But you won’t know until you try it. I’m thinking about you and I know you’ll make a good decision on this. You are loved.
I take lamotrigine. My doctor told me the same thing, but added that “rare” meant like 0.02% of patients. It may be a disclaimer thing, so if it happens patients don’t come back screaming WTF. I was a little nervous when I started it, and I thought my skin was more sensitive than normal, but I think that was in my head. If I recall correctly, she had me do a short ramp-up because diving straight into a high dose increased the risks. After that, she said if I didn’t have issues in the first week or two that I wasn’t going to have issues.
Lamotrigine has been good for me as a mood stabilizer. Depending on my ongoing mental state, that’s the first med she raises and lowers because it’s the best for fine-tuning my brain chemistry. Think scalpel instead of hammer. I haven’t noticed bad side effects–no weight gain, no libido drops, no zombie-ness. Of course no medicine works the same way for everyone, but she told me that in general it’s a very safe med that’s well-tolerated, and it’s been on the market for a long time.
I understand your hesitation. I felt it too. My best advice is to try reality checks to get out of your head. For instance, if you think you feel mouth blisters forming, dab the spots with lemon juice. If it makes you scream, call a doctor. If not, take deep breaths and remind yourself that that’s what’s real. If you form blisters, stop it immediately. It was my understanding that the bigger issue is if you develop symptoms and keep taking it. Take it every day for a week, and let us know how it goes!
@JennaLouise Thank you. I’m sorry you struggle with this too, it sucks. I’m one of those people who used to do the research too and it usually turned into me believing I had one of the bad side effects. I try to stay away from looking now.
@Mamadien Thank you for putting things into perspective. I do need to work on both diagnoses so I can manage things better, you’re right. I appreciate you.
@SheetMetalHead This was a BIG relief to hear, thank you. Yes, he wants me to take a very low dose for 2 weeks and then go up a tiny bit for 2 more weeks until I get to the dose he wants. He did really push the point that it was a very rare side effect, but my brain doesn’t register that very well I guess.
This is great and something that will really help me with reality, thank you.
From ManekiNeko: That’s so hard, I’m so sorry it’s been so much trial and error finding something that fits you.
I understand that hearing about side affects can be scary and cause anxiety. Sometimes they tell you about them just so that there is an awareness that even though it has been unlikely there is a small chance, and while that doesn’t sound comforting at all, I trust that your psychiatrist wouldn’t give you something that is purposely harmful.
Should any side effects happen such as blisters I encourage you to reach out to your dr or psychiatrist immediately.
Perhaps he thought that sharing that information was something important to keep in mind so that should anything happen you and he could deduct the cause.
I know when I’ve started medications and the dr has told me side effects that it has felt stressful too. I know they try to take care to have a therapeutic balance with these kinds of medications.
Would you feel better discussing this further with him before deciding to take it? You are always allowed to voice concerns when it comes to your own health and safety.
(i see a fancy title next to your name too!)
Hi friend,
Everyone got to this post before I did! Hope that the plan to collect the meds are on track, and please let us know how they are working for you, and we can all help support you
You’re loved and you are appreciated for all you do for this community!
Yes, I am picking them up today and starting them tonight. I was going to do it yesterday, but leaving the house was too hard. I have to put our renter’s checks in the bank today (last day of the month, I’m such a procrastinator), so I don’t have a choice today… I have to go out.
