Frustrated


#1

My son is not officially diagnosed except for psychosis though schizophreniform has been suggested by one dr… He just came out of an involuntary hospitalization of 2 weeks. He has a lot of anxiety, abnormal movements, and now that he’s on meds wants to stay in bed and wants to get off of medication…he’s on 5mg haldol, and buproprion…he doesn’t hear voices or see things…dr. in hospital wonders if it’s depression…though my son is not “sad” Lots of stressful events for him these past 3 years (he just turned 21) now he’s in an outpatient treatment program, been there 1 day and doesn’t know if he’ll go back. I wish drs. would remember that “patients”, “consumers” are someone"s child, no matter the age. He’s been home since May when he had a first hospitalization of 4 days. He just was very silent. Dr.s put him on 10mgs of zyprexa which totally zonked him. decreased to no meds in August. Recommended Abilify by another psychiatrst but wouldn’t take it. Is this how it all begins? Therapist thinks he is schizophrenic. Does it matter a diagnosis since meds seem to be trial and error? I am so uncomfortable with the “try this med and see what happens” practice. These meds have heavy side effects. Has anyone tried orthomolecular psychiatry? Nutrition? Supplements? I just want to help S. but am so helpless. The unknown of all this, meds, diagnosis, time is difficult., I wake every night looking for answers…


#2

From my point of view, psychosis is psychosis regardless of which name/label. Unfortunately it is very much trial and error as no one knows until someone is tried on a medication if it will work or not. Even that is hard to determine as for instance with my son I see Clozapine as working very well but according to him it doesn’t work at all. His insight into his schizophrenia symptoms are not what I see. I would think the correct medication is more important then the diagnoses.

Personally I think nutrition and supplements can help to even out the imbalances that are being caused by what is happening in the brain however I don’t think it can cure it. But that is only my opinion.

It is hard when you want the answers in order to help someone yet the more questions you ask the more questions you have.


#3

Be very careful since he is on the Haldol, my son was also an experiment with these doctors and now he has a movement disorder and that along with the sz. is so painful for him and for me to see him. Haldol is a very strong medication if he doesn’t hear voices why the sz. med? I would get a second opinion or call UCLA behavorial center they help you when your son is first starting with psychosis I wish I would have


#4

Well do know that schizophrenia includes what are called negative symptoms, the absence of normal things, in addition to positive symptoms, things that shouldnt be present (voices, ect.).

Negative symptoms include alogia (not talking) avolition (not wanting to do anything) primarily, so this may be just his illness and not the meds. However, meds can be sedating as hell, I am on one of the newer and least sedating meds and I still sleep alot, drink coffee and nap sometimes. I wake up groggy as hell and require an hour and a black coffee to do anything, but other than that I am very highly functioning and fully recovered, im even an amateur powerlifter (I take preworkout supplements for that, theyre stimulant blends).

I would ask for Geodon or Latuda, they are less sedating (I take Geodon, another guy here takes Latuda) and quite new. Latuda is very new. It came out in 2011 I think. Ive tried latuda, it didnt work for me unfortunately, in fact it made me relapse. But enough about me, I would ask for Geodon, Latuda, and then if they dont work, Clozapine. It’s for treatment-resistant schizophrenia and is known to relieve anxiety and help negative symptoms. It’s actually a benzodiazapine of sorts, like a super-benzo. It’s in its own class.

And my psychiatrist told me that he doesnt care about diagnoses, he treats symptoms and that’s it. He writes down what I am experiencing and then gives me meds and then refers to my list of symptoms and checks off what has been eliminated the next time I see him. He quit checking things off a couple of months ago, I am fully recovered and just stay on my meds.


#5

One of the clinics listed in this link may be able to help you with more information and early treatment of psychosis.
http://www.schizophrenia.com/earlypsychosis.htm

The main link: http://www.schizophrenia.com/index.php


#6

Here is another list of good early treatment centers that you can contact for help:

http://www.raiseetp.org/sites/


#7

I don’t know what your insurance does, but latuda was $1,000 a bottle for me. Geodon is about 1/2 that price (I think $500?) so I would try that first. I know that sounds selfish, but it isn’t. This is a life long condition and these people seem to think we are made of money! Think about it this way- if a lower cost medicine is one option and it is completely up in the air as to whether that or the far more expensive one will even help if you save that $500 you can put it away for him in the future, if you have a mortgage put that towards it (he can inherit your house and have somewhere to live if he is well enough and if he isn’t he can sell it and use that money for meds), or you could simply use it to try to do something to lift his spirits. mortimermouse is probably right about the negative symptoms, but my depression was so severe and I was so internally preoccupied (maybe psychotic?) that I didn’t talk much. People thought I was quiet but my head was buzzing with thoughts almost beyond capacity. I talked so little that my voice croaked when I actually did try to use it. But depression still might be in there. He might be very depressed or even in denial about this. Maybe he feels if he takes the meds that will make it real and he will have to admit he is sick and things will never go back to how they once were.
Of course that is a guess. When I got my first meds I was really into it. It seemed for the first time someone cared (my parents and extended family have always cared but I had delusions that they didn’t and I pretty much completely shut them out my whole life so they didn’t realize anything was really wrong) that someone realized that crying every day wasn’t normal or ok. That it wasn’t every day blues. I was also got psychotic (hallucinations) and scared as well as suicidal. I was very sick and had been my whole life, so with doctors and councilors who could see my illness and reassure me I could get better working with me and when the meds got right I became happy for the first time in my life. I never want to go back there again.
It sounds like your son has the opposite problem. He was happy. He was normal, and then this happened. I think maybe he is just scared of what it means.
Sorry for the life’s story. I just want you to know my level of experience so you can value my advice accordingly.


#8

I’ve heard researchers say the really the diagnosis doesn’t matter - and likely will change over the years. Focus on the symptoms and how he’s doing in life - and adjust treatment program accordingly (i.e. try harder to find something if things aren’t working, try something else - in terms of therapy and medications or supplements) There was a good review of antipsychotic medications in (of all places) Consumer Reports a while back. Here it is:

http://www.consumerreports.org/health/resources/pdf/best-buy-drugs/AntipsychoticsFINAL.pdf

More information here:

https://www.nami.org/Content/NavigationMenu/Hearts_and_Minds/Second_Generation_Antispychotic_Medications.htm

And we have information on supplements and therapy here:

http://schizophrenia.com/treatments.php


#9

For those of you who go on Latuda web site and sign up, you can get a break on the meds for 25.00. I pay only 25.00 for my Latuda


#10

Hi violinist. I’ve given up on labels because psychiatry is not an exact science. It really is trial and error when it comes to medication and other treatments. My daughter has tried just about every medication out there. The meds are horrible and made her sluggish and not able to do much of anything. Off her meds she becomes manic, delusional and paranoid. She has seen 4 psychiatrist and the last 2 have been wonderful. I can’t tell you what works and doesn’t work – I’m not a doctor but I know that my daughter’s current psychiatrist is willing to try new things. She has lowered some of her medications and is slowly trying one new med at at time. Her doctor has also decided that anti-depressants do nothing but make my daughter very unstable and I have to agree with her. She has also added vitamin D3 on a daily basis as well as fish oil twice a day. At the moment my daughter is not totally stable. She is slightly manic and has anger outbursts. We know it’s because the doctor is changing her meds which in turn is causing some of this instability. In about a month her doctor is adding another medication, so we’ll see how well she takes to that. I am grateful that her current doctor is listening to my daughter. She is tired of feeling over medicated, gained a tremendous amount of weight and can barely move out of her medication stupor. I’m proud of my daughter that she recognizes that she want a better quality of life and is willing to keep badgering her doctor. I’m hopeful about this new change. Yesterday my daughter cleaned her house and she gave her 2 year old daughter a bath without having to remind her. She felt proud and called me that she gave little granddaughter a bath. I know it doesn’t sound like much but I see progress.


#11

After several years of standard psychiatry, I tried the Orthomolecular approach.

I’ve used the Orthomolecular approach for about thirty years. I do well.

I take the older meds. One thing I believe Orthomolecular medicine has done for me is to keep me healthy enough so that I can tolerate these meds.

And about the anger you express; it is understandable!

Jayster


#12

so what types of vitamins, supplements do you take? Do you see an orthomolecular psychiatrist? What type of older med do you take? Does it work for you? Thanks.


#13

Can UCLA help you if you’re in NY?


#14

Molly, I have heard good things about fish oil and even bought a bottle for my son, who of course wouldn’t take it. Vitamin D3 is also a good one; I’ll keep that in mind as well. What medication has the doctor settled on for your daughter?

You and she are blessed to have a granddaughter to add joy to your lives.


#15

Hi Morgan,

I will know more about her medication when she sees her pdoc in a couple of weeks. My daughter usually goes by herself but this time she asked me to please come with her and sit in on the meeting with the doctor. Yes, I am very blessed to have a granddaughter as well as a 6 year old grandson. My grandson is also my daughter’s and her partner’s child and he is the most awesome kid. He has such a open and friendly personality, he’s smart and people are drawn to him. There is something charismatic about this little boy. He’s also very good with his little sister who loves her big brother. My daughter tells me that the fish oil and VitD3 helps a lot.


#16

Schizophrenia can be very spiritual in nature, so for me spirituality helped me a lot. I volunteered with am organisation the Legion of Mary and they helped me overcome my spiritual paranoia.

Look into holistic therapies.

As regards orthomolecular therapy, some people claim success.

Also, I take 5mg olanzapine to treat my schizophrenia. This is a low dose. But a low dose does not mean you are any less ill nor does it mean it is a less effective dose. Actually it can prove to be a much more effective dose as you offset negative symptoms, such as low form etc. So 5 mg of olanzapine is just as effective. What Im saying is anti psychotics just tweak around with dopamine in the brain. They don’t know what balance exactly theyre looking for. So, 5mg may be perfect.

Things will improve for your son. It just takes time and patience. You sound like a very caring parent. That will help too. Keep up the posting.


#17

I have seen many Orthomolecular psychiatrists, including authors Dr, Alan Cott, Dr Alec Hyde, and another one who wrote a book. I used to read their books, call up and make an appointment, and travel to them. For greater than 20 years I have been seeing an Orthomolecular psychologist. He knows what he is doing, but he is having fantastic success with cancer patients,and therefore his specialty in schizophrenia is sort of eclipsed.

In 1969, I started on Trilafon, aka Perphenzine. I am still taking it. About twenty years ago when I started to show signs of TD, this Orthomolecular Ph. D, psychologist I am still seeing added some lipid compounds, which I am also taking, to my supplements; I have had no signs of TD since then.

The latest thing this Orthomolecular man added to my supplements was vitamin K2 because I now have brittle bones, as show by a recent bone scan.

About three years ago this doctor added Vitamin A Palmitate, Lutein, and Astaxanthin to my supplements because my eye doctor says I am going blind from macular degeneration. Those two antioxidants are very good for schizophrenia as well.

For dry skin, the doctor added rice oil about ten years ago.

The other antioxidants this doctor has me on are what you might think of as Vitamins C and E, CoQ10, and a multi that includes Selenium and a B vitamin that is an antioxidant.

Please note that whereas people are generally aware that B vitamins are complexes, not so many folks are aware that Vitamins A, C, D, and E, and K are complexes as well. This doctor would be unhappy if my general practitioner were to prescribe me D2, for example, instead of D3.

Besides the minerals in my multi, this doctor is prescribing me Lithium Orotate (an over the counter version of Lithium), and additional Zinc, Magnesium, and Calcium.

I am getting a lot of D3, by the way.

I get a whole bunch of additional B vitamins.

And lots of fish oil. (And some other psych meds.)

I do well.

Jayster