Shanti: tapering off Paxil

[Shanti]

One thing I have to face is that I am in fact Schizophrenic. There is no doubt in my mind that I am. It's not just the hallucinations, it's the paranoia and delusions. I had them at my worst mid 20's to 30s. I would feel thoughts were projected to my mind with lazer beams. I thought that radio signals were in my head. I became paranoid of my glasses thinking someone tampered with them and were projecting images into my glasses. Then there's the delusions of persecution and I still do this pretty bad. I have overcome with a lot of spiritual work the paranoia and fear, but I still have schiz issues. I am concerned about permanent brain damage from being untreated for 20 years.

 

I can't deny that the Xanax totally gets rid of the debilitating nerve pain throughout my body. What does this mean? I mean I could take 3 or 4 vicodin and the pain wouldn't go away. Yet take one Xanax and the pain is gone for half the day. It's like a miracle. But I'm scared to death of benzo addiction. I'm afraid of the vicodin and refused the percoset, especially after trying the methadone that put me in the hospital. I'm afraid of the liver damage and now afraid of the Niacin because I'm already concerned about the liver from the vikes. I'm tapering now on the vikes. But what does the Xanax helping me mean? Doesn't that mean that pain is from my mind? Because I am afraid of the benzo addiction, I do want to see if the Latuda will do the same thing the Xanax did as I know from experience that it's not that hard to taper off of antipsychotics.

[Nadia]

Shanti, first, let me say that you have an incredible grip on reality and an incredible perspective on your schizophrenia. That is amazing and shows enormous willpower and clarity.

 

I totally understand your fear with the niacin (I had just been researching taking it for anxiety after a suggestion from Alex and Alto)... however, if it's working for you I think it's worth it to stick with it, hopefully at a dose that works without hurting, and just find a way to get your liver checked to make sure everything is OK. Maybe you could stay under 1000 mg until you can have someone monitor how it's affecting your liver?

 

That is scary about the Xanax as well... to find something that works and then fear that it can harm you more. I wouldn't say that it works means it's all in your head, though. What does that even mean? Our brain is just another organ in our body! Pain is something that happens in the nervous system, and there is no difference between "real" pain and "imagined" pain. If you feel pain, you feel pain! Of course, that doesn't mean all pain is the same or can be tackled with the same medicine. I wish I understood what it is Xanax does that relieves your pain and what a safer alternative would be...

[Shanti]

Nadia thanks for being so understanding. I can sit here and tell you all that these were all delusions but in truth, I believe it all to be true. I truly believe that I had an implant in my head. I believe these "delusions" and think that everyone else is blind to what I am aware of that is happening. But I accept that it may simply be mental illness, I don't know. Either way, it isn't good for my mind. The first psychiatrist said that I do have good insight about this and that it isn't common. I attribute that to my spiritual work and spiritual Guidance that I get through my Heart. He said that it is wonderful that I can tell the difference between the head voices and the heart voices. Big difference.

 

Yeah, I'm going to stick to 1000 mg of Niacin, which is only 2 capsules. Even that low dose does help some with the visions and voices. Since the pain is literally crippling me, I'm going to go ahead with the Xanax and try the Latuda hoping it helps like the Xanax and then stop the Xanax. If it doesn't, I think I'm going to go ahead and be a Xanax addict because I have zero quality of life with the pain.

[Nadia]

Doing some research, there are a LOT of studies that show that many schizophrenics have a reduced flush-response with niacin (which may explain why you're not having one even at high doses). There doesn't seem to be a lot of support for Hoffer's use of niacin for schizophrenia, on the other hand, but that's not surprising. I think, like with autism, that many "psychiatric" conditions may be rooted in nutritional issues (or nutrient absorption and metabolism issues)... Like with my friend's mother, who was diagnosed with schizophrenia but got better when she healed her gut on the SCD diet and was able to get the nutrients she needed.

 

I found a study that was cited as showing that niacin was not a viable option for schizophrenia, but it's actually not quite that clear cut. It says it could help some people who are diagnosed as schizophrenic, as schizophrenia itself may really be a conjunction of different disorders:

 

"Despite the accumulating information on the role of transmethylation processes in schizophrenic psychopathology, there are no indications that the clinical use of nicotinic acid in the treatment of schizophrenic patients has increased. This clinical reserve may be due to the controversial findings in 'controlled' studies in which statistical methods were employed on nosologically, but not necessarily biochemically, homogenous groups. The findings that have accumulated during the new psychopharmacological era strongly suggest, however, that there are numerous schizophrenias (i.e., conditions utilizing the same final behavioral pathways), but that the abnormality of methylation processes, which might be alleviated by nicotinic acid treatment, is associated with one or a few of these disorders."

 

(From "Nicotinic acid in the treatment of schizophrenia: a summary report".)

 

But the study is from 1970!! It seems like after the early 70s no more studies have been done (again, where would the money be in it?) It's like they gave up. If you personally are getting a good response, I think that is really encouraging and worth finding a doctor that can monitor the dosage's effect on your liver.

[Nadia]

This is scary to me: http://www.latuda.com/

 

Only four six-week studies, and look at the list under "safety information"...

 

Can that really be better than Xanax?

[Shanti]

This is scary to me: http://www.latuda.com/

 

Only four six-week studies, and look at the list under "safety information"...

 

Can that really be better than Xanax?

 

 

I don't know Nadia. To be honest, my only real guidance in what I'm doing is my pendulum! I'm so confused that I've decided to use the pendulum to give suggestions. I figure my higher self will tell me what to do. Well, I've been taking Xanax for about 2 years so I'd say I'm already addicted and it's working. So I don't know if I need to go ahead with the Latuda. I go back and forth on this every day! Thank you for all the research!

 

Tardive dyskinesia (TD): TD is a serious and sometimes permanent side effect reported with LATUDA and similar medicines. TD includes uncontrollable movements of the face, tongue, and other parts of the body. The risk for developing TD and the chance that it will become permanent is thought to increase the longer a person takes the medicine and the more medicine a person takes over time. TD can develop after a person has been taking the medicine for a short time at low doses, although this is much less common. There is no known treatment for TD, but it may go away partially or completely if the person stops taking the medicine.

 

That's the one that always scares me about antipsychotics. I feel I almost went into this with the Geodon. Yeah, I don't think it's worth it.

[Shanti]

Okay, I think this is what I'm going to do. My intuition is really speaking out about this and you two did a lot of confirming of this. Two Niacin a day really makes a difference and even keeps the hypnogognic (sp?) hallucinations away, which is amazing. Three docs have told me that going unmedicated causes more brain damage. That's where they are confusing me and scaring me. But my intuition isn't agreeing with this as my symptoms are pretty controllable with the spiritual work and Niacin as well as Homeopathy. The Xanax gets rid of the pain. I'm not sure why. It could even be its anti-seizure properties that are working and not the anti-anxiety. So I'll just stick to my natural stuff and the Xanax. I was only wondering too if the anti-seizure in Xanax was working, why isn't the Neurontin working for the pain. Idk. But I just know the Xanax works and it's a huge relief.

[Altostrata]

Good decision. You can always change it if your approach doesn't work.

 

...Three docs have told me that going unmedicated causes more brain damage. That's where they are confusing me and scaring me....

 

Shanti, that opinion of the docs is purest speculation. This is what they've been taught to say about schizophrenia. As we saw before, there is a lot of controversy about whether schizophrenia itself causes brain damage.

 

There is far, far more evidence that antipsychotics used to treat schizophrenia cause brain damage. Tardive dyskinesia is an example of this.

 

Your condition actually improved over time. Doesn't that indicate the "damage" is not progressive? Please stop worrying about this.

 

Among the "neurologically various," there are many people who've done fine without antipsychotics. Their symptoms don't go away, but they are able to live fairly normal lives anyway.

 

It's pretty remarkable that niacin is helping you. Note the danger zone is more than 3 grams per day. That would be 6 capsules of 500mg.

 

Many of the pain medications you've been recommended are addictive. Vicodin and Percocet are notorious. Methadone causes physical dependency.

 

If Xanax works, it doesn't cause a worse dependency than any of the others, or say anything about your quality as a person. Yes, it could be the anti-epileptic qualities are what is helping you. Pain control is trial-and-error and I think a pain specialist would be pleased that a low dose of Xanax works for you rather than a cocktail of even more dangerous drugs.

 

PS Latuda is the newest antipsychotic, it's being heavily promoted to doctors. Is that why there's all this interest in Latuda? It's not any better than the others.

[Nadia]

Shanti,

 

I think you are making the right decision! The Latuda sounds really scary to me... new drug, possible tardive diskinesia, etc. I agree with Alto that doctors don't really know that schizophrenia gets worse without treatment. Besides, you ARE treating yourself through other, gentler means: spiritual, homeopathic, nutritional, etc.

 

I think you are on the right track!

[InNeedOfHope]

Did your nerve issues start before the medicines or after? If it was after is that why Xanax helps because the nerve pain is a side effect of withdrawal? Even with all your pain, you still have a very positive attitude which is to be admired.

[Shanti]

Okay, I have to be honest. I've been in total fear the last couple of days over this. My Solar Plexus Chakra is totally out of wack and this isn't right. My Guides don't guide me by fear. They Guide me in Truth and Peace. I appreciate all the help given here for antidepressants but I am deciding not to let my gut guide me, but my heart. As soon as I decided this, I was shown more proof that Schizophrenia does in fact cause more brain damage left untreated with brain scans. There is a lot of evidence of this. Reading these reports, I felt a calm energy which is what I usually go by to guide me.

 

http://www.schizophrenia.com/disease.htm

[Nadia]

But isn't treating yourself with niacin a form of treatment? I wish I knew more about schizophrenia... The only thing I know is that big pharma is not to be trusted, and that many studies are funded by drug companies.

[Altostrata]

Shanti, that site, schizophrenia.com, seems to be a group of people who believe schizophrenia is a brain disease. It's a brain disease fan club.

 

Those scan studies were done on people diagnosed with schizophrenia who had been treated with psychiatric drugs. There is a major question whether the "damage" seen on the brain scans was caused by the drugs or the so-called disease.

 

Here is the truth of that research: Andreasen Drops A Bombshell: Antipsychotics Shrink the Brain Andreasen is the doctor who did the brain scans.

....in a 2008 interview with the New York Times, Andreasen confessed that the "more drugs you have been given, the more brain tissue you lose."

There's a great deal of discussion about this on the Web. (There are also major questions about the accuracy of scans to detect mental illness.)

 

There are other people who do not believe schizophrenia is a degnerative brain disease. For example,

 

Robert Whitaker The Truth About "Schizophrenia" & Fixing Chemical Imbalances

 

More from Robert Whitaker http://beyondmeds.com/2010/05/19/a-schizophrenia-mystery-solved-by-robert-whitaker/

 

http://www.robertwhitaker.org/robertwhitaker.org/Outcomes%20in%20the%20era%20of%20atypical%20antipsychotics.html

Moreover, the problem of early death associated with antipsychotic drugs has accelerated since the introduction of the atypicals.

Factors Involved in Outcome and Recovery in Schizophrenia Patients Not on Antipsychotic Medications: A 15-Year Multifollowup-up Study. Journal of Nervous and Mental Disease, 195 (2007): 407-414.

 

NIMH-funded researchers followed the long-term outcomes of schizophrenia patients diagnosed at two Chicago-area hospitals in the late 1980s, and they found that at the end of 15 years, 40% of the schizophrenia who had stopped taking antipsychotics were recovered, versus 5% of those who had stayed on the drugs. Long-term outcomes for patients with other psychotic disorders were also much better for those off the drugs than for those who stayed on the medications. (This is the first look at long-term outcomes since atypicals like risperdal and olanzapine became the recommended treatment.)

 

Adverse Events, Tardive Dyskinesia, Brain Shrinkage and Early Death with Atypicals. (This is just a smattering of studies that detail the problems induced by atypicals. In particular, there is growing literature on how Zyprexa and the other atypicals may induce metabolic dysfunction....)

 

Dr. Marsha Linehan: Expert on Mental Illness Reveals Her Own Fight No, Dr. Linehan is not on medication, as the article implies.

 

This is like right-wing and left-wing politics. Who do you want to believe?

 

There are people who believe schizophrenia is a degenerative brain disease and must be treated with psychiatric medication. Many of these are doctors who, guess what? prefer to prescribe drugs to treat it. But there is no real evidence that this is so, any more than there is evidence that depression is due to a deficiency of serotonin. And, as you've seen, your doctor isn't above lying to you to get you to do something she wants you to do.

 

There are people who believe that schizophrenia is not a degenerative brain disease, and people with it can manage their symptoms without drugs. Read the blogs listed in the blogroll on http://recoveryfromschizophrenia.org/ including the Hearing Voices Network.

 

You have choices beyond the antipsychotic-of-the-month, this month's being Latuda.

[Altostrata]

Shanti, can you see this doctor? She's an orthomolecular practitioner -- she'll know about the niacin. (From http://orthomolecular.org/resources/drs.shtml )

 

 

Bessie J. Tillman, M.D.

2787 Eureka Way

Redding, CA 96001 USA

Phone: (530) 246-3022

Fax: (530) 246-7894

Type of Practitioner: M.D.

Type of Treatments: Nutrition, Detox, Allergies, Holistic

[Altostrata]

More about that schizophrenia brain imaging study:

 

http://www.psychologytoday.com/blog/mad-in-america/201112/cognitive-therapy-found-effective-in-unmedicated-psychotic-patients-and-o (The entire article, titled Cognitive Therapy Found Effective in Unmedicated Psychotic Patients (And Other News), is worth reading.)

 

Antipsychotics and brain shrinkage

 

In February of 2011, Nancy Andreasen reported that the brain shrinkage seen in schizophrenia patients was associated with use of the older neuroleptics, the newer atypical antipsychotics and clozapine. In a follow-up paper, Andreasen provides new details about the nature of that shrinkage, but downplays her earlier findings that antipsychotics cause such shrinkage. Instead, she attributes it mostly to the disease, even while acknowledging that she previously found that "neuroleptic treatment" contributes "significantly and independently to the tissue volume reductions, while other possible confounders such as substance misuse do not."

 

In this new article, Andreasen reports that tissue loss in schizophrenia patients is seen in multiple gray matter regions of the brain (total cerebral, frontal lobes, and thalamus), and in multiple white matter regions (total cerebral, frontal, temporal, and parietal.) This tissue loss appears to be most severe during the early stages of illness, and occurs "at severe levels" in only a subset of patients. The tissue loss is strongly associated with cognitive decline, and more weakly associated with an increase in symptoms (negative symptoms, psychotic symptoms, and disorganized thinking.)

 

However, it is unclear why Andreasen is confident that the shrinkage is due at least in part to a disease process, given the recent review of this topic by Joanna Moncrieff and Jonathan Leo. They scoured the literature for MRI studies of schizophrenia patients who had been ill for an extended period of time and had never been medicated, and they found three such studies. Yet, in all three, the researchers concluded that there were "no major differences" between the schizophrenia patients and normal controls "in global cerebral, grey-matter, ventricular, or CSF (cerebrospinal fluid) volumes."

 

Andreasen doesn't cite that finding in her new paper. Instead, she sums up the disease/medication question in this way: "While neuroprogression may be partially accounted for by a medication effect, it also reflects an intrinsic and progressive disease process."

 

In other words, if her interpretation is correct, antipsychotics could be said to exacerbate a disease process that characterizes schizophrenia.

[Shanti]

Okay, after much meditation and talking with other schizophrenics on the forums over there I've decided, very peacefully, that I don't need the Latuda and that even if Schizophrenia causes damage untreated, I'm taking such good care of my brain health with supplements and good food that I believe it can repair itself. The Niacin works.

 

So it was good to come back here and see all this evidence that makes me feel better! I will call that doctor and see if she takes my insurance, or if not, if she's affordable for me to see. It's nice to see that there is a doctor like that near me. Thanks again!

[Shanti]

Btw, what I did on the Schizophrenic forum was ask if anyone has ever had nerve pain from the Schiz. No one heard of it before. Someone suggested a supplement for neuropathy pain that looks like it has very good reviews and I might check that out.

[Nadia]

Okay, after much meditation and talking with other schizophrenics on the forums over there I've decided, very peacefully, that I don't need the Latuda and that even if Schizophrenia causes damage untreated, I'm taking such good care of my brain health with supplements and good food that I believe it can repair itself. The Niacin works.

 

So it was good to come back here and see all this evidence that makes me feel better! I will call that doctor and see if she takes my insurance, or if not, if she's affordable for me to see. It's nice to see that there is a doctor like that near me. Thanks again!

 

Yea, Shanti!

 

And great job researching, Alto!

[Shanti]

Hi. I'm back. I took a 2 month break, staying at 20 mg Prozac. I'm doing great. My biggest concern lately has been the Vicodin as it aggravates my diverticular disease bad. I have to get off it but I'm addicted to pain relief. So, I gave Medical Marijuana another try, this time with guidance. So I started out really small, titrating the Cannabis as I am slowly reducing the Vicodin. It's working great, no brain zaps this time. And the great thing is that it is definitely easing the pain. I'm getting a script for it now that I know it does work for me.

 

So exactly 2 months yesterday and started to reduce the Prozac. I feel like I am so close to being free! I can't wait for the day I get to post my success story.

[Altostrata]

Excellent news, Shanti. Did you get the liquid Prozac?

[Shanti]

Yes, I get liquid Prozac and my insurance is covering it. I'm so glad the switch went so smooth. I definitely recommend this as an alternative to anyone having too much trouble.

[Altostrata]

Hey, how is that Prozac taper going?

[Shanti]

Hey, how is that Prozac taper going?

 

It's been uneventful, thank God. I just recently dropped to 16 mg, and was only at 18 mg for a couple of weeks. I was feeling stable and ready so went ahead and dropped early. I have to watch it though, not get too confident and drop too fast again. I think that's where I end up going wrong.

[Altostrata]

No withdrawal symptoms at all?

 

Thanks for the good news.

[Shanti]

Yes, I'm having some symptoms. I'm isolated and sick. I get tinnitus now and then. I'm just not having the worst of the symptoms now, such as severe depression, anxiety and brain zaps. I just feel yucky, off balance and weak. I'm very glad I'm not near as bad off as I was before. I still have the same nervous system symptoms I had before AD, which is neuropathy and pain, but that's the only nervous system issues I'm having.

[Altostrata]

You might want to reduce by 1mg at a time, rather than 2mg, and see if you feel better. 2mg might be too aggressive, given how the Paxil withdrawal affected you -- and it wasn't that long ago!

[Altostrata]

Here's a paper for you, Shanti:

 

Harrow 2012 Do all schizophrenia patients need antipsychotic treatment continuously throughout their lifetime?

 

and Robert Whitaker's commentary:

 

http://www.madinamerica.com/2012/02/interpreting-harrows-20-year-results-are-the-drugs-to-blame/

[Shanti]

Thank you for pointing the post out to me Alto, I didn't see it. It's very good!

[Shanti]

I saw a new doctor yesterday that I liked. I went to a different Indian Clinic to get a new doctor. I really liked her. She checked me out, questioned me and listened to me more than any other doctor I've seen. She's concerned about my withdrawal problem and referred me to another doc, that is also the pain doctor. She said he'll help me and I said "I don't want new psychotropic meds!" and she said "I don't blame you and I'm glad to hear you say that". So we'll see what he says, as I have to see him anyway for pain management. She was also supportive about my not wanting on meds for SZ, and told me to keep doing what I'm doing because it's working.

[Altostrata]

Much better, Shanti.

 

Did you run into problems with the Prozac taper?

[Shanti]

Nothing new. I do fine if I do absolutely nothing. Just the last couple of days I tried to do extremely gently stretching and moving exercise to stretch and move. I only did it for 3 minutes tops, but it was enough to cause me weird nervous system issues like body vibrating, sharp jerks in my back or stomach. It's just so weird and I'm so confused about whether this is because of AD or if it's from the original CNS problem. So I don't know what to do. My doctor is trying to get me an MRI for my spine but she said it will probably be denied from MediCal because my Neuropathy is only in my far extremes, hands and feet, so there's no linking the nerve issue to my back. Which is unbelievable because I have severe nerve pain running from my back all the way down my leg to my feet like sciatica. Same with my arms. Is this WD? I don't know, but it doesn't seem others are having this exact issue and I was having some trouble before AD. Uggh. Anyway, I'm not going to let anyone interfere with my slow taper. I'm mainly seeing the new doc for pain management because my doctor is worried about my liver from the Vicodin. It was tender when she pressed it. She thinks the new doc will help with the taper because I told her my issue and why I am only on 14 mg of Prozac, which is an odd dose to her. I'm getting fat. For the first time in my life I'm labeled obese, at 32 body mass fat. She was nice and told me she wouldn't guess I was technically "obese" lol. But still, it's driving me nuts that I can't exercise or walk when I want to lose weight and I also feel like my back would hurt less if I could shape up.

[Altostrata]

How about swimming in a heated therapy pool? Or hot tub? Can these help?

 

Hugs, Shanti.

[Shanti]

Yes, physical therapy in the pool helped last summer and fall. I'm going to see my other doc Tuesday and ask her for another script for that. Thank you

[Karma]

Shanti,

 

Update your signature ... so happy you are down to 14 mg Prozac! I'm watching to see how this works for you. I may have to go this path myself.

 

Do these look like Homeopathic solutions - just curious what you think.

 

Tyovu - is a frequency enhanced elixir supplying water that has been imprinted with energies that tell your body to optimize thyroid and adrenal function. The advanced technology used to make Tyovu is able to concentrate this information in the water to such as extent that your thyroid and adrenal function will improve greatly within a few months.

 

FemBalance frequency enhanced water elixir that signals your body to balance and optimize female hormone production. Increasing production of hormones that are too low while decreasing production of hormones are too high.

 

Karma

[Shanti]

Shanti,

 

Update your signature ... so happy you are down to 14 mg Prozac! I'm watching to see how this works for you. I may have to go this path myself.

 

Do these look like Homeopathic solutions - just curious what you think.

 

Tyovu - is a frequency enhanced elixir supplying water that has been imprinted with energies that tell your body to optimize thyroid and adrenal function. The advanced technology used to make Tyovu is able to concentrate this information in the water to such as extent that your thyroid and adrenal function will improve greatly within a few months.

 

FemBalance frequency enhanced water elixir that signals your body to balance and optimize female hormone production. Increasing production of hormones that are too low while decreasing production of hormones are too high.

 

Karma

 

Hi Karma. I messed up, I'm at 16 mg, not 14. Though I think I will drop to 14 tomorrow as I've been stable for a bit now. I'll keep ya posted how I'm doing. So far it's good. Much better than the Paxil taper anyway.

 

That does sound like the way Homeopathy works, but I don't know where the energy imprint is coming from. Are they using something like Reiki to do it I wonder? Like "Reiki in a pill"? lol. Idk. Same principle but with Homeopathy the energy impressions comes from a chemical. If you use it, let me know how it works. I saw a doctor yesterday that said I look like I have something going on with my thyroid and that would cause my nerve pain and neuropathy. I have a bit of a bulging eye now and a bit of puffy at my neck. I'm waiting to hear from my regular doc about my thyroid. I don't know if it's been checked. I really hope it's thyroid so I can try to treat it.

[Karma]

Hi Shanti,

 

So glad things are going well for you on the Prozac taper .

 

I don't know if I'm going to try these or not. I was thinking if they were homeopathic that it might be worth a try, but it is also possible that they are a gimmick. I'll let you know if I try them.

 

I know how you feel about hoping it is the thyroid so you can treat it - I was so relieved when I learned I was hypothyroid because that meant there was a reason for how fatigued I felt. And my initial treatment did help me feel so much better.

 

Love and light,

Karma