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Old 09-24-2005, 05:49 PM   #1
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What to do.. Running out of hope. Please help!

This thread is not about me, but about my sister. She has had severe mental ilness for more than 10+ years now. From what I understand she has been diagonised as schizoeffective. Our family is really confused on how to deal with this situation, so I am turning to you guys/gals for help.

About 10 years ago my sister began exhibiting symptoms of mental illness. First it started as depression and excessive amounts of sleep. She would not like to talk with anyone, then it was paranoia, how total strangers she had never met knew strange things about her, then there were physical changes in her like her posture, she would slump down as it almost embarased about something or lacking self confidence. Then finally she basically went into a catotonic state where she closed her eyes and would not respond to any stimuli and closed her fists extremely tight. She just became rigid.

Our family was devastated. We had never see or heard about anything like this. I personally did not know anybody with these kinds of disorders, so I was also completely caught off guard. She was hospitilized for about 3 months in a really good place(didn't even feel like a hospital) and she had good doctors. She bounced back nicely, but over the years it has been up and down but mostly down. Rather than type out the rest in long hand I will list bullets of important items...

- She went through periods where she was mad at all of us(her family) for not reason, saying that we neglected her.
- There were periods where she would ask people to repeat what they said over and over and over again
- Was hospitalized a second time after she abruptly stopped taking her meds and locked herself in her room refusing to come out for 3 to 4 days.
- In the last year or so complains that she hears voices all the time, that these "people" bother her. They insult her and say profaine upsetting things to her.
- Sees images, like bright lights, a spinning hat that keeps falling to the ground
- Even complained in the past about tactile halucenations.
- these days it seems things have gotten worse in respect to her halucenations. She says that she hears voices 24x7. She can't even sleep, stays awake the whole night saying crazy thing
- I think she has taken every med in the book here are some to name a few:
Zoloft, Lexapro, Clozaril, Resperidol, Serequil, Depekote, Abilify, Geodon, Zyprexia, welbutrin, and a lot more.

No matter what she has taken, she really hasn't come to a stable state where she has any quality of life. Our family is very close and care for each other a lot. We are just confused as to how to get a handle on this situation. Obviously we don't expect her to be perfect, but if she had some quality of life it would be nice. Right now we would settle for a stop or reduction of the audiotary halucenations. That alone would allow her to increse her productivity imensely. Can anybody share similiar issues, stories, solutions etc - anything would be helpful. Thanks

 
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Old 09-24-2005, 06:16 PM   #2
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Re: What to do.. Running out of hope. Please help!

There is hope and help out there.
Stay here for some and there are other support groups out there too.
__________________
God Bless

Mudhound

 
Old 09-25-2005, 11:54 AM   #3
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Re: What to do.. Running out of hope. Please help!

Thanks for the reply and word of encouragement. I am just confused. Most stories I have read on these boards show that if a person takes their meds regularly, then this hearing voices thing subsides, but with my sister, nothing helps.

 
Old 09-26-2005, 12:44 PM   #4
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Re: What to do.. Running out of hope. Please help!

Well, Zyprexa helped my son when he was hearing voices, but I see that your sister has already tried it. I have mentioned it before, but you might look into orthomolecular treatment, which includes vitamins and dietary changes. It does not mean stopping medication, although some people do end up stopping medication after a while. One thing that I think every person with schizophrenia should try is going on a limited diet for 4 days to see if they are being affected by allergies to food. Some people with schizophrenia, I think it is about 5%, merely need to avoid certain foods in order to be well. Gluten and dairy products are the most common, but anything, even exhaust fumes from cars, can be the culprit. It only takes 4 days of avoiding the foods to improve the symptoms, and that isn't too hard to do, if you can get the person to cooperate. Take a look at the book "Brain Allergies" by Willam H. Philpott, which explains a lot more.

After struggling for well over a year we think we have finally found the answer to our son's schizophrenia, I am going to make a separate post about it. Don't give up, that has been our motto, my husband and I. Medications can help, but from what I can see they are not very successful in giving the person a really normal life, so I think that you have to do more than just give medications.

 
Old 09-28-2005, 04:24 AM   #5
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Re: What to do.. Running out of hope. Please help!

Kime, thanks so much for your post! I haven't heard this angle of it. I will look into the book you mentioned.

 
Old 09-30-2005, 08:37 AM   #6
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Re: What to do.. Running out of hope. Please help!

You're welcome. I first heard about these things because someone posted about it online at NAMI, so I like to pass it on in case anyone else is looking.

 
Old 10-17-2005, 01:22 AM   #7
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Re: What to do.. Running out of hope. Please help!

I have learned, through the course of many years of being ill, that it is not the quantity of meds that a person takes, but the quality of the meds that proves beneficial. I have taken a variety of medications in various combinations and found myself sinking further into illness instead of improving. I never heard voices untill I used certain medicines, and I thought they'd never stop once they started. It took a long time for me to realize that once on a medicine it takes a month and a half for the voices to go away, but that is if you only use an antipsychotic by itself, if you use other meds you end up in a fog of psychosis that spans mania, depression, personality disorders, catatonia, rage -you name it. I tried every new pill that came out trying to escape the agitation that most of the new meds cause. I went through the phase of medicating to treat side effects and medicating to stop the depression that was caused by excess medication. I used to have severe negative symptoms and it took a very long time to realize that it simply wasn't true. At one point I stopped taking a shower, changing my clothes or eating. I simply sat in a chair in a catatonic state. I was on so much medication that I was numb, couldn't laugh, cry feel or care. Once I stopped the Benzos and the atypicals and the antidepressants and the Parkisonian drugs in combination and started just taking plain old Haldol at a real low dose my problems evaporated. A regular prescription for me was 3 mg Risperdal or 20 mg Zyprexa or 40 mg Abilify (seperately) plus antidepressants, Lorazepam, klonopin and anything else the doctor could throw in to treat a symptom. I now take .5 mg of Haldol, down from 5 mg when I started. I have never felt better and it took 2 months for the voices to stop once I stopped taking a cocktail of mixed meds. It took another 2 months for the anxiety and agitation to stop. The doctor told me I had either treatment resistant Schizophrenia or Bipolar and he wasn't able to determine which. I know that there is such a thing as treatment resistant Schizophrenia and that the only medicine that treats it is Clozaril. I asked him why he never put me on Clozaril and he said he was saving it and Lithium as last resorts meds for me. At one point I was on both Zyprexa and Seroquel at the same time along with 3 other meds. I got worse and worse and worse. The last time he wanted to increase my medicine over my complaining about symptoms I went to see another doctor who took me off all the medicines and put me on Haldol. I have been well ever since, however it took about 6 months for the withdrawals to stop.

Once I believed that it was diet making me sick. I tried cutting out this and that and keeping a record of everything I ate and how I felt. Just to see if it was food causing it I went without any food for 4 days and drank only distilled water. I tried mega does of vitamins and thought after a few weeks when I didn't improve that it might be excess copper or some other mineral in excess that was causing me to be the way I was. I went to an herbalist for a year and stopped all meds. It really worked but it was so nasty having to drink the concoction that the herbalist packaged in bulk for me that I quit. When I took Seroquel my blood pressure was 90/48 so low I wasn't hungry and turned into a skeleton. When I withdrew from Seroquel I had terrible visual hallucinations and false memories. I took Risperdal for 4 years and walked the floors for 4 hours every morning. When I withdrew from it I thought people were asking me questions when they weren't even saying anything to me and had severe mixed moods I sat in a chair and didn't move or talk except to go to the bathroom for one week. I didn't go to sleep for 8 days. When I withdrew from Zyprexa I wandered lost for a week and half and finally walked into someones house and got arrested. I had two heart attacks on Geodon and inversion siezures when I stopped it. Abilify was the worst withdrawal I have ever experienced. I had strange seizures for 3 weeks and thought I was going to die, in short it was about as bad as withdrawing from Zyprexa.

I went to a regular md one time and asked him what he thought, he told me that every Schizophrenia medicine is a miracle drug, but that it was a medicine called Thorazine that they considered the cure for Schizophrenia when it first came out because it was the first medicine that was available. He prescribed it to me and I took it a year. For each year of my life there has been a different medicine and I have tried every one available. I have learned combinations don't work, atypicals don't help, that it is changing meds which causes the most severe symptoms because a person deals with side effects and withdrawals at the same time and that skipping doses or taking a little extra on some days doesn't work. The only thing that works is taking a medicine steadily, at the lowest dose that controls the symptoms, titrating it if I plan to start a new one and simply living with my illness, the side effects and going on with life. Some people get stuck in a mental illness rut and aren't ever able to get out of it. They aren't able to adjust to the meds and aren't able to learn the boundaries of their illness. Learning the limitations of mental illness enables a person to accept it and work around it. No matter how many medicines I was on, how many symptoms I've had, I have learned to live. I work, watch tv, eat and support my family and no one who meets me would ever suspect I have Schizophrenia.

The best thing to do is choose one good medicine, take the lowest dose possible of it, never miss a dose and slowly figure out what it is about the person's particular ilness that medicine doesn't seem to affect and try to work on it. Time takes care of everything else.

 
Old 10-17-2005, 08:09 AM   #8
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Kime HB User
Re: What to do.. Running out of hope. Please help!

Hi Barkingshark,

It's really great to hear how well you are doing. I agree that medications can cause a lot of problems. My son didn't have a problem hearing voices until he took Geodon, but after he stopped taking it, the voices kept coming back and I think a sleeping medication he was taking may have been causing it, but I can't be sure.

When you were taking vitamins, how much niacin were you taking? I ask because my son has taken various amounts of niacin and other vitamins and before at one point he was taking 18 grams a day for 3 months and it did not make any difference, but now he is taking 11 grams and I know it makes a difference because a couple of weeks ago he was taking 6 grams and he was having negative symptoms for part of the day on some days but no symptoms in the evening so I tried raising the amount of niacin and the negative symptoms went away even in the morning. I am not sure if a surgery that he had helped or if it just took a lot of time for the vitamins to take effect but in either case I don't think my son would be helped by the niacin if he was only taking 3 grams a day or less right now, I believe that he has to take at least 6 to make a difference because he still had some symptoms when he was taking 6. Sleep is also important: we are making him run on the treadmill each day now and his sleep is a lot better at night.

Dietary changes don't help everyone, but it is worth trying because it really helps some people and a few people only need to avoid one or two foods to be well. My son is mildly affected by cheese, I am hoping that with time this effect will go away because he loves cheese.

Are you still taking any vitamins or just the Haldol by itself?

Kime

 
Old 10-17-2005, 10:43 AM   #9
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Re: What to do.. Running out of hope. Please help!

I think maybe you are talking about milligrams and not grams of Niacin.
The maximum dose of Niacin the human body can tolerate of Niacin is 3 grams daily after that it destroys the liver. There are two forms of Niacin, Nicotinic Acid and Niamicide. It is Nicotinic Acid that is supposed to be beneficial in Schizophrenia. It is supposed to taken in equal amounts with Vitamin C to protect the liver from scarring. There is a product called NADH which is a compound that Niacin is converted to in the body which is more effective than Niacin without the serious health risk of over exposure to Niacin. I found Niacin to be of no benefit and the NADH only works for a period of a few hours. It is the actual conversion of Niacin into NADH that is beneficial to Schizophrenics and not the action of Niacin alone that helps.

There is also 5htp which a person can try. It causes mild anxiety the first day you use it but doesn't have any withdrawals. Like Niacin it is made in the brain and is also a part of the Seratonin pathway, differing from Niacin in that it has not been found to be toxic.

And of course there's GABA which is another brain chemical which is sold in the health food store that is relatively cheap and works on anxiety and negative symptoms. It knocks anxiety deader than a doornail for 23 hours before it wears off abruptly. I have actually gone off meds and used GABA alone to treat my illness however I chose to return to prescription medicine because it does not wear off suddenly if you forget a dose as Gaba does.

One thing about the newer medicines is the department of welfare and the veterans administration have decided not to pay for them anymore because they did not provide any more benefit than conventional older medicines and they are associated with a risk of death. The medicines that are on this list are Clozaril, Zyprexa, Risperdal, Geodon, Abilify and Seroquel. In the US government report, the government claimed to be paying for 70 percent of all the atypicals prescribed in the USA and that they are now requiring that these medicines have a label on them just like cigarettes that disclosed this risk of death. They interviewed the makers of Risperdal, which is the most prescribed of these meds in the USA and they admitted that it had been found that during clinical trials that there was a actual risk of death as an unreported side effect. Risperdal addmitted that in the lab test before the trials that many of the lab animals died. (That is why it has been the brunt of the long standing joke that it's name is not Risperdal it is Rats-perished-all )

If you're thinking about trying your child on Haldol (Haliperidal) think long and hard about it, because it is the medicine they prescribed a woman in Texas who suffered from depression. They took her off it without titrating it and a week or two later she drowned her 3 kids in a bathtub. At the trial her husband testified that there had not been anything wrong with his wife untill she was given Haldol. She recieved the death penalty. What was the reason she did it-? Haldol withdrawal causes anger and rage.

Haldol was the usa hospital standard of treatment for the longest time because it is potent with few side effects. At 5 mg a person is stiff, peg legged and has blurred vision. At 2 mg, which is a good dose for anymore with moderate to severe Schizophrenia, it is virtually symptomless and you can not detect that you took a pill. If taken at night it makes a person slightly drowsy but not doped. The one big thing which is scarey when you first start it is the strange muscle jerks where you lay in bed and your whole body will suddenly just jerk when you are trying to fall asleep. It abates to where only the stomach will do it and then it stops after about six months. It is a harmless side effect that really spooks most people. Some people take a monster load of Haldol, beyond 20 mg. I am not sure how they do it because 5 mg of Haldol is a horseload. It is the cut off point of where communication stops and zom-b-i-tis begins. Haldol is considered to be the 4th strongest medicine in potentcy and can not be mixed with a lot of other meds because of interactions. Whether that is true or not, I do not know. I do know it is potent because there have been days when I first started it that I doubled my dose and took 10mg of it

There is another good medicine call Fluphe****ne, like Haldol it is about $10-20 a bottle and is particularly potent. It can not be taken if person has sleep apnea, glaucoma or asthma. Haldol is the better of the two meds. How does Haldol rank when compared to newer meds? It closely matches Abilify without the seizure activity associated with Abilify. It doesn't have the drowsiness of Seroquel or Risperdal or the agitation associated with Risperdal and Zyprexa. I wouldn't even bother to compare it to Geodon because I don't consider Geodon capable of treating anything, but for some it is a miracle drug -but those people have something different wrong with them than I do.

The best way to take a medicine for Schizophrenia is once a day at bedtime. Some of the meds are supposed to be taken twice a day, Seroquel and Risperdal for example. I have found that by going to bed after taking a medicine that has a broad side effect profile that a person can avoid most of the side effects by sleeping through them. I have never taken more than one dose a day to avoid the side effects. It is also easier to forget you are sick if you take medicine at bedtime and then go to sleep.

Of the things I've recommended you may want to give GABA a try. It only costs $10-15 dollars a bottle, and unlike Niacin, your child will know he took a pill. It causes a feeling of calm and security which is very beneficial to a person who worries they may never get well. It is not much of benefit beyond that but every little bit helps.

 
Old 10-17-2005, 01:19 PM   #10
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Re: What to do.. Running out of hope. Please help!

I don't have time to read you whole post right now but I will later today. How much niacin did you take? Less than 2 grams a day is pretty useless for schizophrenia so if you took less I would not expect it to have had any effect. Even 6 grams a day is not quite enough for my son, although I expect that I will be able to lower his dose eventually. Your information about niacin causing liver damage is not correct. It does cause elevated liver enzyme function tests, though, and many articles talk about the elevated enzymes as if it were liver damage even though the people never had any problems with the liver not working right and the elevated enzyme levels returned to their former levels in less than a week after stopping the niacin. I will explain more about the safety of niacin in another post.

You are right about NADH.

The reason that they take vitamin C with the niacin is because they work better together. I personally think it is partly because vitamin C and niacin work together to fight against allergies, my husband uses the combo for his asthma and neither one works by itself, he has to take both. Vitamin C also does a lot of other things for you that lower the stress that the body is under and less stress is always better for a person with schizophrenia.

My son took 18 grams of niacin a day for 3 months, and he tolerated it just fine. And I do mean grams. We use the TwinLab 1000mg capsules, and he was taking 6 three times a day. His liver enzymes were somewhat elevated, but he had no problems with actual liver function.

 
Old 10-17-2005, 01:57 PM   #11
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Re: What to do.. Running out of hope. Please help!

It turned out that I have more time than I thought so I can reply now. It is true that there are some cases of actual liver damage that has been caused by slow release niacin, but not regular niacin or niacinamide. I have never found evidence that there has been even a single case of regular niacin scarring the liver, and I have done a lot of looking because my son takes so much. Where did you get that information? I looked on MedLine and I couldn't find a single article that implied that niacin at any dose could destroy the liver, only that it "caused temporary liver damage" that went away when the person stopped taking the niacin, which means the liver function tests were elevated and they went back to normal after stopping the niacin. If you are going to talk about niacin having such serious health risks you should do more research to make sure the information you are giving is accurate.

Niacinamide can be taken for schizophrenia, but some people can't take a large enough dose because it can cause nausea in large doses, but niacin is much less likely to cause nausea. My son vomited after taking 6 grams of niacinamide for a week, but he has never gotten nausea from even much higher doses of niacin over many months. I know a woman who has a son with schizophrenia who takes 6 gram of niacinamide a day and he does not get nauseated from it and he is doing very well.

NADH works more quickly than niacin because it takes time for the body to convert the niacin into NADH, but niacin can work just as well. It takes a much larger dose of niacin than NADH to have the same effect, that is one reason so much niacin is needed. It takes a lot of niacin to make a little NADH. Also, the little dose of NADH costs more than the large dose of niacin, at least the NADH I bought did. If you had a short benefit from NADH then I think there is a good chance that you would have had a longer lasting benefit from niacin or niacinamide if you had taken enough for your body to keep your NADH level up.

My son was taking 5htp for a long time. I could not tell if it was helping or not.

I have heard that GABA is great stuff. I think I will get some because it may help my son to feel more confident in social situations. He has never been very good at socializing and a year and a half in the Twilight Zone hasn't helped to make him more confident. He seems to feel fine when he is at home, but when he goes out of the house he feels uncomfortable.

I am not thinking about putting my son on any drugs, including Haldol, although if he becomes psychotic in spite of the things that seem to be working so well, I have a supply of Zyprexa which has worked very quickly in the past for him. He isn't really a child, he is 18 years old, although his illness has set his maturity level back somewhat. He was 16 when his symptoms started.

 
Old 10-17-2005, 07:30 PM   #12
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Re: What to do.. Running out of hope. Please help!

Medicine is not the answer. I would bet my life on it that she's gluten intolerant, maybe even celiac. Try the Gluten free/casein free diet for a month and see what happens. There are answers here and there not drugs.

 
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