I found this community last night while being up all night with my Wife who has SZA. I am glad I found it so I can talk to people who can understand what I am going through.
Also sorry for the long post, but I figure details help.
My wife was diagnosed with schizoaffective disorder about 3 years ago, she also has a history of substance abuse, which she has been clean and sober for years now. When she was first diagnosed she was put on Invega pills and then ultimately shes was transferred over to the monthly injection at 237mg (sorry if that’s wrong) I know it’s the highest dosage. It had honestly given her back her life. She was symptom free aside from small break throughs that would last maybe an hour.
This lasted for 3 + years.
About 4 months ago she woke up and I could tell very quickly that something was terribly wrong. As she put it to me “the voices are back and at full volume”. She and I have joked about the crowd in there, but this hasn’t been a joke. It has been relentless for 4 months.
Her doctor tried adding abilify and dose adjusting etc. All while still getting her shot every month. At one point the side effects either from the abilify or the combination got to a point that she had a 6 week instead of a 4 week interval on her shot along without any abilify, her doctor was letting the abilify wash out, to let things stabilize.
At the end of that 6 weeks she was almost back to her old self. She got her shot which she and I talked to her doctor about, we were a little apprehensive because she was doing well.
She ended up getting it and within 72 hrs. She was getting much more intense voices that where louder then ever, she talks to them having full conversations out loud which she never has had and is miserable.
She just wants peace and quiet in her head. I want my wife back. We dont know what to do or what to ask at this point.
Through all of this she has continued to work and function ok, but it is taking its toll on us both.
Any help is appreciated and sorry for the long post.
I’m so sorry to hear that the Invega monthly is no longer working. My son has been on that med for a year, at the highest dosage, for his schizoaffective disorder.
Have you talked to your wife’s doctor about Clozaril (Clozapine)? It’s considered the go to “miracle med”, when other meds have failed. You can search and read a ton of info about the experiences of others who have tried this med.
Hi @Enehamkin - Welcome to the group! You’ll get a lot of support here. I am sorry to here that the meds are not working for your wife at the moment. That must be incredibly frustrating for you and her! My son on invega (lowest dose) for about 4 months. As per Day by Day - perhaps Clozapine may help? I’ve seem a lot of positive posts about that one. I hope the invega kicks in again however.
there are more choices than simple meds. Profrontal worked for my daughter, until she quit taking it. Sarcosine also works, which is an amino acid and some people take it to lower their med dose. Currently my daughter is having success with a homeopathic remedy and there are 8 choices for schizophrenia that work. The choice is selected based off of symptoms. google homeopathic remedies for schizophrenia. Our choice is stramonium in 200C strength that I purchased on Amazon. I wanted to take her to the naturopathic clinic that specializes in this treatment, but currently I cannot talk her into it. Miracle results so far
The concern with clozapine is that, the blood draws would be possibly an issue for my wife.
Getting blood from her is hard on the best of days, and unless it’s a lab person that’s very skilled or creative with where they will take blood from it wont happen. Plus she gets very anxious and worked up, so it’s on the list of things to try, but it’s the “we are out of options” drug.
Are there other options to ask about. Ot seems like most of the medications are all similar to each other with the exception of clozapine, so if the invega has stopped working it appears that everything in that family or risperidone based meds probably wont work or am I missing something?
@Kellyshayne I have been investigating the natural remedies, and supplements. Once you found the supplements to try how long.did it take to start showing any kind of relief, or that something was happening ? Also is there anything that would be bad for me to take with her ? To convince her to try it out I might have to take them with her.
In re reading my post I realized I forgot to mention: as of the last couple weeks, she has convinced herself that she doesnt have SZA people are just bothering her all day constantly. Sprinkled with a touch of delusional thinking (not making light of it, just the best way to describe it)
But she takes all her medication without missing a dose. So I just go with it so long as it doesnt present a danger to her or anyone else.
@Enehamkin - I started taking sarcosine (it’s for sz and major depression) when I was giving it to my son (in smoothies). He is on the Invega (117) and his doctor said it was fine to take with the shot. I don’t get much of it in him but it has helped me for mild depression. I don’t know how long it took to help but if I don’t take it for a while, I notice the difference. Sarcosine Brain Vitamins - About Us – BrainVitaminz It’s not expensive. I believe @Kellyshayne gets her Profrontal from this company as well.
@Enehamkin Has your wife ever had her vitamin D measured? How old is your wife? Hormones might be playing a part.
Many with Schizophrenia have been found to have deficient vitamin D. Some people seem to metabolize it faster. There is a study where the patients with schizophrenia and staff sat in the sun for the same amount of time; those with schizophrenia did not have the increase in vitamin D that the staff did. It is safe to supplement 10,000-20,000 iu as this is what you can get from the sun in about 20 minutes.
@Hdd - This is good to know. My son rarely goes outside. He does a bit more now that he has to walk to his second job which is in the day. I will see if I can get some D in him. Thanks!
@DianeR The last time my son had his measured, his level was at 23, deficient. I believe it is a major factor in my son’s mental health and fortunately he will supplement it. I do have to remind him and emphasize it’s importance right now.
My daughter used to take the Profrontal with a lot of success. Then she thought she was better and quit and there was nothing I could do to get her back on it.
Then I tried Blackseed oil which worked wonderfully. But she thought that if she took it then she was admitting she was ill.
Now it is only Stramonium 200C and nothing else. It is a tiny sugar pellet about 1/8 of an inch round. Results were showing improvement that day. She has been ill since 2014 and almost no meds that entire time. So if your wife is been using meds for a long time, it may take longer for her.
I crush the pill and put it in my daughters herbal tea, since otherwise she would refuse.
Homeopathy works by likes having likes. It it’s very different from anything else for healing. It it’s pure energy of whatever element it is made from.
It would not hurt you to take it, but you might begin to feel the effects of a different energy in your system that is putting you in a direction you don’t like. It is very temporary though for you. For the person that needs it, it begin to heal
@Hdd my wife turned 36, 2 days ago. She takes a vitamin D 50000 IU once a week, no clue if its low or not, haven’t been able to get her bloodwork done recently, trying though. As far as hormones well her prolactin is sky high and has been for a while now from the invega, her estrogen levels were discovered to be non-existent so she uses a patch for that. Beyond those I think everything else was either ok or not checked.
I will look into the supplements. Make sure it they wont interact with anything else she takes. Anything that could possibly give relief is worth trying.
I just got home from work so hopefully a peaceful ish night. Thankfully she doesnt get all super rage angry that often.
@Enehamkin Estrogen will show low in the blood if progesterone is low. The phase of the menstrual cycle when blood is drawn is also a factor. Progesterone is what gets estrogen out of the cell to be excreted. There is a lot of confusion in mainstream medicine regarding estrogen/progesterone due to the estrogen industry. How long has she had the estrogen patch? Estrogen interferes with thyroid function/metabolism and causes inflammation.
She actual hasn’t had a period for a couple years because of the invega and high prolactin. She saw and reproductive health specialist (we aren’t looking to have any children, just who they referred her too) and an endocrinologist just to get everything looked at. I know that her thyroid is on the list of things to check, along with a laundry list of things. The estrogen patch about a year or so. She was in danger of getting brittle bone disease / osteoporosis. Shes due for a check on that as well. I know her hormones have too be screwy though.
Enehamkin, I understand the challenge you face with Clozaril. My son refuses all oral pills, due to delusions, and that’s why he’s still on Invega Sustenna. He still experiences a lot of positive symptoms, even after 12 months at the highest dose.
The only way our son will get on Clozaril is if it’s involuntary, during an involuntary hospitalization that puts him in touch with an aggressive psychiatrist. We missed our opportunity during his last hospitalization because our son ended up at a different hospital, with a different psychiatrist calling the shots. We missed our chance, so our son is still struggling.
She will take her medication, i do not envy those of you that have to deal with fighting for compliance, but getting the required blood draws are a problem. She doesnt have good veins. I’ve watched many times lab techs miss and she only can stand them to try 2, 3 times max before she can’t sit anymore. So that’s not a good situation considering the side effect profile of clozapine. So it’s a last resort.
The weekly blood tests will be a serious issue, which will have to be figured out first. The “immune system failure” / “cardiac issue” are not something that I would want to chance by not getting proper supervision.
If this wasnt such a major problem for her, I think she would probably have been switched over by now, or at least discussed more.
If she stays the course with her shots, in theory will whatever has been thrown out of whack re-balance on it’s own? I know this is a loaded question, but most of what I find is, med x stopped working, switched to med y and now I’m fine again or similar.