kimsie at January 6th, 2014 12:31 — #1
Hello to everyone,
I am the mother of a young man who has had schizophrenia for 10 years since he was 16 years old. When he first became ill I took him to a doctor who gave him a lot of supplements such as niacin; it didn't help but he kept taking them anyway while he was also on medications (most of the time abilify). A couple years later we moved into a new house and after a few months I found out that he had stopped taking his abilify and was doing just fine. He thought that he had just gotten over the schizophrenia (he didn't really believe that he had it at that time) and after a few months he stopped taking the other vitamins and he got sick again and had daily voices even on medication for the next 6 years. (without medicaion he became delutional in addition to the voices)
Now I have figured out that the reason he got well when we moved into this house is because at the time the water neutralizer was using magnesium oxide and that was the missing factor in his supplement protocol. So now he is back on the supplements, with added magnesium, and has been off his meds for 5 weeks and as long as he takes the supplements 3 times a day he doesn't have any symptoms, but he keeps slacking off on the vitamins and then he gets a little bit of voices and he ramps up on the vitamins again to make them go away. Also he keep drinking energy drinks which increases his dopamine, but he can still do well as long as he takes the vitamins faithfully.
I have developed my own theory of what might be the usual cause of schizophrenia (a broken mechanism for slowing the production of dopamine when dopamine levels are high along with blockages in the pathway that breaks down dopamine) and I have put our experiences and my thoughts into a bog, but I don't know if it is allowed to post the name of my blog on this site. Is it OK to do that? It is completely non-commercial and it just is a log of our experiences with schizophrenia and depression and my thoughts about the causes and best natural treatments.
Here is a list of the supplements that we have found to be essential for my son.
niacin 6-9 grams a day total
magnesium 1200 mg a day total
folinic acid (or methylfolate) about 5 mg a day
P5P (or regular B6) about 100 mg a day of P5P
B12 5000 mcg a day
a few grams of vitamin C per day.
A good multivitamin
The niacin, Vitamin C and magnesium are divided into 3 doses and given 3 times a day with meals. If there are loose stools then less magnesium is needed. The amount of magnesium depends on how much niacin is needed. Because of the large amount of niacin he has to use regular niacin and not niacinamide, but I think that hexanicotinate would work, too. Niacinamide starts causing nausea at about 5-6 grams a day.
My son took these high doses of niacin for about 4 years earlier on, and never had any problems on his liver function tests, which he always had to have due to his antipsychotic medications. I looked online, but I couldn't find any instances of someone having permanent liver problems from taking regular niacin, only slow release niacin. There have been some studies done where they have concluded that niacin might cause liver damage, but if you examine the studies, they just say that because some people get elevated liver enzymes, not because their livers stopped working. There have been a few cases of people getting jaundiced from high levels of niacin, but it went away after stopping the niacin.
For us this small risk is well worth it because my son has never been able to have a really normal life or hold down a job with the medication. Now he has 10 years of bad habits and lack of social development to overcome but at least now he has the opportunity to overcome it.
radmedtech at January 6th, 2014 12:47 — #2
I'm glad your son has discovered the healing powers of supplements. I posted a topic called "Supplements vs medications" yesterday. I've also found several supplements that have helped with my symptoms.
I think it's ok to post the name of your blog. But, if you're a new user to the forum, you won't be able to post the direct link.
There are many of us who would be interested in your experience!
cefe at January 6th, 2014 14:47 — #3
I have recently read Dr. Abram Hoffer's book Healing Schizophrenia. It inspired me to question my son's doctors about the possibility of my son taking supplements. Dr. Hoffer talked about megadoses in his book and so I don't think that I would pursue it without a doctor's involvement.
Unfortunately both psychiatrists said that they never even heard of Dr. Hoffer and were not familiar with mega vitamins and supplements. I would worry about giving them to my son without a doctor's involvement. The doctors are not trained to do this in medical school and beyond.
Is your son seeing a doctor who is knowledgeable about this ? Does he tweak his doses ? Does he keep tabs with your son's reactions with blood work ?
If you are working with a doctor where did you find one who knows about this ? Is this doctor a psychiatrist ?
I look forward to hearing back from you. Thanks.
szadmin at January 6th, 2014 15:12 — #4
Its great that your son is doing well - and the science does seem to show that some supplements likely help people, but the theory of Nacin helping people has been tried many times starting back in the 1950s and while some early tests by Dr. Hoffer suggested it might be helpful, many other tests with larger groups of people did not show any help. You can read more here:
There is newer research that is much more supportive of other supplements being helpful - you might want to investigate those also:
mortimermouse at January 6th, 2014 15:25 — #5
I give alternative medicine an appropriate chance- I take weightlifting supplements with all of the vitamins and minerals (Niacin, B vitamins, all that jazz) and they do make me feel very sharp and energetic. I love taking my supps and hitting the gym! One of the feelings I live for, the intensity of a great workout. I just give orthodox medicine a chance too.
mindwhisperer at January 6th, 2014 15:35 — #6
His a well known psychiatrist that treat many type of mental illnesses with supplements.
Unfortunately niacin gives me terrible nervousness, maybe it doesn't go along with risperdal,
kimsie at January 6th, 2014 15:40 — #7
The name of my blog is Histamine Normalization.
For the most part doctors are not aware of using supplements for treating schizophrenia. If you look at orthomolecular.org you can look up a practitioner in your area. Keep in mind that the usual protocol for orthomolecular treatment of schizophrenia does not include large doses of magnesium, and we have personally found that the supplements do NOT work without extra magnesium. If you find an orthomolecular doctor, he/she will most likely not object to using extra magnesium if you say that you want to.
My son was seeing an orthomolecular doctor for about a year when he first got sick, so I am already aware of what they do and how they work. He is not seeing one now, but he has been seeing a regular practitioner but he started the vitamins and went off his medications between visits so she wasn't involved. I check on him every day to make sure he is doing OK. I have had a lot of practice observing him and I am able to tell when he is getting worse and if he does get worse he will start back on the medication. I am not suggesting that anyone do the same thing we are doing. I am just relating what we are doing and how it is working for us. My son didn't start lowering his medication until his voices started going away. He had always been in the habit of trying to stop taking his medications about once a month anyway, but he could never stop for more than two or three days before he had to go back on again until he started taking the supplements again.
kimsie at January 6th, 2014 16:18 — #8
Yes, I am already aware that the studies that have been done have not shown that the supplements work. I believe that this is because Dr. Hoffer did not understand how the niacin worked and why it was needed. This is understandable, because the knowledge of biochemical processes were not very advanced back in the 50's. Because of this, the role of magnesium was not understood and although I believe that not everyone who has schizophrenia needs extra magnesium, and other people have magnesium in their water supply, most people who use these supplements will have to take more magnesium or they will not work. I wouldn't consider any study that did not use magnesium of any use at all in showing that the supplements can't work, because I already know that they won't work for most people without it.
I have tried to give a very detailed explanation of what I think is causing schizophrenia in most people and why these supplements work in my blog. If anyone wants to look at what I have to say and can find problems with my logic, I would be very happy to hear their criticisms of any faults they find in my theory. I am constantly trying to learn more and gain a better understanding and making changes to my theory when they are called for.
In a nutshell - in order to get rid of dopamine (and the other catecholamines) you have enough SAMe (for the COMT enzyme) so you need B12 and folate, and you have to have enough niacin and magnesium to stop a negative feedback loop from inhibiting the MAO enzyme because the product of the MAO enzyme is an acetaldehyde, and when acetaldehydes build up in the body, they cause a negative feedback loop which inhibits the enzyme which makes them. The breakdown of dopamine requires both the COMT and the MAO enzymes, plus an enzyme to breakdown acetaldehyde such as aldehyde dehydrogenase (this is where the niacin and magnesium are used.)
Because of this, anyone who has high amounts of acetaldehyde in their body will have a heavy drain on the cofactors needed to get rid of dopamine. High acetaldehyde can be caused by candida overgrowth, allergies (histamine also goes through an acetaldehyde stage), histamine producing bacteria overgrowth in the gut, and alcohol consumption.
Caffeine increases dopamine and so increases the need for these cofactors also.
I understand where you are coming from and why you like to wait for a scientific study to show that the supplements work, but for me after 10 years of my son's schizophrenia I am tired of waiting and prefer to try to find some answers myself. Some people can live a normal life with the medications, but my son isn't one of them.
cefe at January 6th, 2014 18:15 — #9
Thanks for replying to me. I went to orthomolecular.org and found through that site a list of practitioners in my area. When I went on their websites, none of them listed schizophrenia as a condition that they treat. Did the practitioner that your son saw, officially treat schizophrenia ?
Also, no one on the list stated their credentials with any medical degree (MD) but instead listed themselves with an ND. degree. None of them were psychiatrists. I'm not sure if that matters but I guess I would feel better if one would have the level of schooling and training that an MD has, just in case there was a bad reaction to any high level of any vitamin or supplement. I would also want the practitioner to have schooling in synergistic reactions to the psychiatric meds. with the supplements.
You said that your son saw an "orthomolecular doctor" Was this doctor an MD ? If so, what was his specialty ?
If this doctor was not an MD then what was the degree held ?
I am aware that Dr. Hoffer's results were not replicated but the the fact is that even though the psychotropic drugs' results have been replicated in clinical trials, the results have not been replicated with my son. These meds have not been effective for my son, so I certainly know where you are coming from.
I am trying to have an open mind about alternative opportunities. But of course I want to be sure that this route would be safe and there would be support from a doctor who knows about psychiatry and schizophrenia.
kimsie at January 6th, 2014 19:34 — #10
The doctor I took him to was an MD. He said he had treated patients with schizophrenia.
I think the main thing with the medications and the supplements is that if the supplements begin to work and the person needs less medication or no longer needs medication, then the medication will affect them like it would someone without schizophrenia. It probably depends on the medication. With abilify we didn't have any problems. I don't know about other medications and how they would mix with the supplements.
One possible strategy is to just start really slow and gradually increase the amounts so that there is a lot of time to see the reactions. At low doses, the niacin and magnesium probably won't have much effect, though. Our experience is that since my son heard voices even on medication it made it easy to see that the vitamins were helping. Does your son have any positive symptoms even when he is on medication? Is your son on abilify or something else? Did you take a look at my blog and try to figure out what I am saying about what the mechanism is that I think the supplements have to help get rid of dopamine? Is your son paranoid? That can be a real problem.
I know that it is rather frightening to think about an unproven treatment. I remember how terrible it was for my son even with a so called proven treatment - when he took Geodon it made him about 5 times worse than having no medication at all. I am sorry that it is so difficult to find a doctor who has experience in this, I don't think there are very many. I don't think there is any way to have complete assurance of safety, but I don't think there is complete assurance with the medications, either.
darksith at January 7th, 2014 05:10 — #11
i did meds for less than 6 months the rest of the time i did supplements, vitamins, though it has never taken away the sz, it has acted like a stabilizer to my moods.
a sz brain never stops and needs a lot of nourishment .
i avoid sugars they take the brain on a rollercoaster ride, alcohol, processed food, any colours in food .
barbiebf at January 7th, 2014 09:27 — #12
I find myself on the fence with this. I do believe that supplements and diet can make a big difference. I think if the person is willing to acknowledge that they have a condition that needs to be treated then supplements can play a big role. My son for example, I can barely get him to take a multivitamin so getting him to take supplements 3 times a day and at mega doses is not possible at the moment however I would love it if we can reach that stage at some point in the future. I think if stability can be reached with medications than that insight can be carried over to a supplement regimen. Still the insight has to be there. Since this type of regimen has to be kept up then whatever is causing the imbalance is not getting corrected. Still treating this imbalance, if possible, with supplements rather then medications is great and I'm so glad that it is working. My biggest concern with this would be that if something happened to tip the dopamine levels to high then without a base protection of anti-psychotics (minimum dose) then psychosis is only a step away.
I was planning on making an appointment for my son with the family doctor for a physical and blood work as I want to see what his levels are at as I have been curious about this for awhile now. Thank you for the information as I find it very informative.
kimsie at January 7th, 2014 09:37 — #13
If you aren't taking magnesium, you might want to try adding that and see what effect it has. But don't do it unless you are taking at least 3 grams of some form of niacin a day or it might just give you diarrhea.
kimsie at January 7th, 2014 10:16 — #14
It took my son about 4 years to realize or admit that he actually did have schizophrenia, so I understand what you mean about that. He was finally convinced when he got lost driving around in Seattle and he had thrown his shirt away and got out of his car and was walking around on the freeway in the snow with no clothes on the top part of his body having no idea where he was until a very brave and kind lady persuaded him to sit with her in his car until the police arrived. That scared him into taking his medication, and he never stopped for more than a few days at a time again until we started the vitamin protocol again and the voices were going away.
As far a cause is concerned I believe that most people with schizophrenia have a malfunction in their regulatory system for dopamine because when you have too much there should be a feedback loop that slows the production of dopamine, but that obviously isn't working in this case.
But that by itself would not usually cause constant psychosis, I think there has to be a blockage in the pathway to get rid of dopamine, too. In my son's case I believe the underlying cause of the blockage is a messed up gut with either candida that produces acetaldehyde or bacteria that produce histamine which goes through an acetaldehyde intermediate stage as it is being broken down, just like dopamine and the rest of the catecholamines do and all the excessive acetaldehyde uses up the cofactors needed to get rid of hid dopamine so he needs to supplement those cofactors.
Unfortunately it's very hard to get these gut problems resolved, and especially when the person doesn't cooperate with dietary changes, but at least my son is willing to take supplements, even if he keeps eating junk.
In my son psychosis is definitely only a step away, but that is because he keeps on with the energy drinks and smoking (both of which raise dopamine) and he tends to miss doses of the supplements out of laziness. Since his first symptoms are just a little bit of voices it gives him a warning that he is skating too close to the edge and he ramps up on the vitamins. If he didn't take energy drinks and he took the supplements three times a day all the time, he would have a larger buffer between where he is and psychosis. This is why I check on him every day for signs that he might be getting worse.
The thing is that even skating on the edge he hears far less voices than he did when he was taking the medications, and his negative symptoms are gone. It was the negative symptoms that made it so that he couldn't hold a job, or else maybe also some side effects from the medications, it's hard to know which is which sometimes.
I have some hope, but not a lot of hope, that we will be able to address the gut issues in the future, but I don't have anything to report about that at this time.
barbiebf at January 7th, 2014 10:31 — #15
My son loves his energy drinks too and smokes about 30-40 cigarettes a day. Recently I have tried taking the approach of talking to him about his dopamine levels. Again thank you for the information
kimsie at January 7th, 2014 11:45 — #16
You're very welcome.
I always say dopamine, but really it is probably some combination of the catecholamines (dopamine, nor-adrenaline, adrenaline) since they all use the same enzymes for breakdown and the others are "descendants" of dopamine.
mottec at January 7th, 2014 11:50 — #17
Suplements can do good for many problems. Magnesium for one improves sleep a lot, although it can cause diarhea when ingested as a pill, instead try raw spinach, about 200 grams each day, since its filled with magnesium and you will sleep better.
kimsie at January 7th, 2014 11:57 — #18
When a person is taking a lot of niacin, (and if they have a lot of histamine they also need B6 for the DAO enzyme) then they can tolerate a surprising amount of magnesium without loose stools. My son takes about 1200 mg of magnesium a day and it doesn't give him diarrhea, but at first he had to go over into bowel tolerance to see where the cutoff point was for him. Spinach is a great food, but I think it would be hard to get 1200 mg of magnesium from it, although it might be absorbed better from spinach than from the pills and he might need less. I doubt if I could get him to eat a lot of spinach. He isn't too cooperative in dietary matters.
But thanks for the idea, I will keep it in mind.
radmedtech at January 7th, 2014 12:07 — #19
I take an effervescent magnesium powder. It's highly absorbable due to having citric acid and carbonate.
stoneycaldwell at January 7th, 2014 14:35 — #20
Both of these books hold a lot of good info. I didn't want to have to take any medication plus when I did it never did anything to get rid of the voices where you can't hear them at all and that is the only thing I ever wanted when it comes to this WHOLE experience. So, I put my mind on natural things from herbs to supplements & exercise. Trying to get super strong & SWOL like (@mortimermouse
) on the weights.