So, I spent all last week and over the weekend in the hospital. The doctor there was pretty discouraging. Which I guess shouldn’t surprise me since my pdoc the day I went in wasn’t helpful either. He pretty much said that unless I’m willing to retry all the meds that failed previously, switching meds isn’t an option. And I really didn’t think I had tried THAT many, but according to my records and that doctor the only antipsychotics available to me that I haven’t tried are clozapine, prolixin, thorazine, thioridazine, and another one that sounded like those 2 but he said those aren’t really prescribed anymore and also all 5 are on the red list on my genesight testing anyways.
Anyways, so he gave me the option of either transferring me to a different hospital to start ECT or discharging me. He couldn’t give me the information I was wanting on ECT before transfer, so I opted for discharge. I’m at least more stable now. Still not great, but not as bad as I was.
Mostly I just really need to work on lowering my stress levels before they literally kill me or get me killed.
I’m glad you’re home, but bummed for you that you’re running out of options. I’m in the same boat. I’ve tried tons of APs. Nothing fully helps. I just have to keep my stress low and hope for the best.
I’ve tried almost everything. Antidepressants, antianxiety, mood stabilizers, and antipsychotic medications. I’m on an antipsychotic that has notorious side effects but works well and now comes with a appetite suppressant. I’m also on only half what I used to be on. All I take for anxiety is 2 mg Valium. I also take 5 mg Lexapro, 30 mg propranolol, and 10 mg zyprexa. That’s not a lot. I believe I could get off the Valium without any more tapering. I was on 5 mg zyprexa and did good for two months. My psychosis and depression was triggered by insomnia and I went back up to 10 mg. The zyprexa is taken in a pill that has the appetite suppressant, and is called Lybalvi.
Thanks y’all. It’s been a rough few months, then it got a lot worse when my allergist referred me to an oncologist who ordered a few ultrasounds, blood work, and a bone marrow biopsy. It’s been rescheduled for the 21st. After that gets sorted I think I’m just going to stop going to the doctor for awhile. It’s just too much all the time and I can’t keep up with it.
Welcome home!!! Did you get plenty of jello? Fun fact: if you are scared of your roommate, sometimes, they put you in a private room to prevent you from running into the hall and having a panic attack.
The bone marrow biopsy sounds miserable, and I’m so sorry you’re dealing with that. How have your headaches been? I’ve got my fingers crossed that you at least got a break from that. Hugs!
I’m trans and in a wheelchair, so I’m pretty much always guaranteed a private room haha
As for the headaches, the Botox stopped working after only 3 years of treatments, so I’m using ubrelvy now and it works really well for me, assuming I don’t run out. So well that I don’t really consider my migraines an issue at all anymore. I haven’t had an intractable one since I started using it, which is super impressive to me.
Seriously, though, I’m supposed to get an IV infusion treatment along with Botox. I put it off because of stomach issues. I didn’t want to add more medicine when I don’t know what’s going on with the abdominal pain and stuff. I’m tempted to make the appointment anyways. Co-pay was going to be over $1k every three months after my insurance covered their part. Nope! I found a discount card. Thank goodness!
It’s just another medicine on top of other medicines. It’s Vyepti. My insurance is putting up one heck of a fight for medicine that really makes a difference (dihydroergotamine, for example).
Anyhow, are you a hard stick? I know you’re in and out of offices and get testing or treatments, too. How are your veins fairing?
I’ve developed a lot of scar tissue, so it seems to be getting more difficult every time. They have resigned to giving me IVs in the middle of my forearm because my elbow and hand are all but useless. I’ve also recently developed small vessel disease, which I don’t really know much about because it’s such a minor issue that I don’t have the energy to bother looking into it, but the vascular doctor said it pretty much just means that my veins in my extremities are teeny tiny. So that’s not helping.
I would definitely consider clozapine. Some do well on this forum on it. I just take a very low dose as an add on and it helps. It’s not true that it’s not prescribed anymore.
I didn’t mean to say the clozapine or prolixin aren’t prescribed anymore, I probably worded that poorly. But my genesight testing had all of the ones I listed in the red category, so my doctor doesn’t think it’s is useful orsafe to prescribe it.
Yeah, that’s not accurate. Does she just not understand how genetic testing works? It’s not too test if it’ll work for you. It’s to test how you metabolize the meds.
No one has ever mentioned small veins to me. Just scar tissue. At my last ER visit, they had to use an ultrasound to get the IV going. But… I have very sensitive skin. When I left, they popped silk tape on the spot but never cleaned up the goop from the u/s. I peeled it off, but by that time, I’d developed blisters. Some were peeled open when I pulled off the tape. I went to a follow-up with my PCP a few days later, and she thought I might have cut myself. The blisters basically left behind little lines.
