Posted by tsoygal on May 6, 2005, at 17:20:05
In reply to Re: Seroquel Withdrawl Symptoms?!, posted by hadleigh71 on May 3, 2005, at 12:28:44
Wow, from 600 mg to zero of Seroquel. I pray you are doing okay. I agree what was mentioned earlier about the importance of SLOWLY tapering off. (Typically it seems that many doctors do NOT do this; our experience has been the psychiatrists believe 3 days is plenty time for 'tapering' off). My adult son has been taking Seroquel only since January 2005, and before that he was taking Risperdal . Both are awful drugs.
He took Risperdal, 2 mg,, and then started experiencing seizures nearly 6 months to the day later. ( We have since learned that seizures are one of the side-effects of Risperdal and it takes about 3-6 months for them to show up; sometimes they appear sooner or later.) The Physicians Desk Reference (PDR) tells you a lot about meds which one will never read in the enclosures, of tiny print, which are packed with a med--if you're lucky you'll get one of these inserts. My son did NOT receive any printed info the whole time he was taking Risperdal through the free services at the local Mental Health/Mental Retardation agency--MHMR.)
So, in a space of 3 days the MHMR psychiatrist yanked my son off Risperdal, 2 mg, (and Mirtazapine, 15 mg.) and put him on Seroquel. Plus this psychiatrist wanted him to go from zero Seroquel to 600mg daily in the space of a weekend.
When I heard the doctor say this, I thought to myself: "whoa. If he needs to take 600 mg, okay, but to zoom him up to that level when he is also dealing with seizures; this doesn't feel okay," But I said nothing.
Once we were in the car my son said: "Mom, I don't think it's smart to start Seroquel so quickly, what do you think?"
We've since learned Seroquel is also a neuroleptic that is being freely prescribed though its safety was based on limited trials, on a small population.
But, until we became better informed, he tried to comply by going on Seroquel, but intuitively he knew to do it slower than what the psychiatrist was wanting. Still it was faster than what he would do today.
He never reached the 600 mg. mark set by the doctor because his seizures became worse. The psychiatrist's reaction to increased seizure activity ? Take MORE Seroquel.
Our son asked for my help. He wanted to learn more & yet he felt so drugged, or was recovering from daily seizures, that he was unable to do the research.
By combing the web & bookstores, he and I learned that, like Risperdal, Seroquel can cause seizures, especially if the patient is inclined to experience them. ...and at this point in time, my son was/is 'inclined' to experience them.
As the seizures required an EEG test and an MRI, my son requested to see a neurologist through the medical assistance program in our city. He was given an appointment 2 months in the future, while he continued to have convulsions. So, my husband & I paid for a neurology appt. Hundreds of $$ for that visit . But we wanted to make certain there was no tumor or that a stroke weren't the causes of his convulsions. The neurologist assured us that he felt it was okay to wait until the 2 month appt. happened, especially since a family physician, not part of the charity system, had seen to it that our son went on Trileptal.
Now, after being part of the local, charity system, my son has had 3 different appointments with 3 different docs at the public/charity neurology unit at the biggest hospital in this city. Each of the neurologists has a different approach for treating the daily seizures, which are now reduced to simple partial seizures. All of them agree that Trileptal is a good Rx for his seizures, but each of them has his/her idea of what extra seizure med should be added. Only one feels that the Trileptal by itself is enough.
Also, all of the neurologists, except one, believe my son should stay on Seroquel. Are they confering with the psychiatrist(s) about anything? No.
I find it frightening that both the psychiatrists and the neurologists treat the same brain/my son but they do NOT talk to one another.
I asked the one neurologist who raised a red flag regarding Seroquel to write a note to the local MHMR/charity psychiatrists with his recommendation that Seroquel be lowered until my son has a symptom warranting the use of Seroquel-- but this neurologist refused. Boldly he spoke about Seroquel, but he won't put anything in writing. Everyone is afraid of law suits, I presume. He told me/my son to tell the psychiatrists what we want to happen. Why would we hesitate to speak up?
What is at risk is that my son can be removed from the rolls of MHMR, if it is determined he is 'NOT compliant' regarding his medication. And this would have a negative ripple effect on my son's application for Social Security Disability. So we're trying to decide what to do.
Perhaps you will find it helpful to read the book : YOUR DRUG MAY BE YOUR PROBLEM. It has been an eye-opener for us.
We also found a 2003 copy of Physician Desk Reference (PDR) for $9. at Goodwill. In the PDR it is interesting to read what my son's doctors are supposed to be reading and sharing with him/us BEFORE they send him out into the parking lot with free samples and/or a month supply of heavy duty neuroleptics (Risperdal and then Seroquel). Within the PDR, you will learn about the relatively small populations that a drug's trials are performed on & you'll see for what a short period of time, 4-6 weeks, a drug trial consists of.
Why are millions of people taking anti-depressants, & especially anti-psychotic meds, and other meds that tinker with their brain for years & years when there is nothing in the trials that support this approach?
Just because it seems to 'work' doesn't mean there will not be serious reprecussions 3, 5, 10 years down the road. In my son's case, it only took 6 months before we started seeing a side effect...but what other damage was done? what other damage is being done as he slowly lowers the Seroquel ?
Yet, definitely, paranoia, hallucinations that accompany Bi-polar (and of course Schizophrenia) are very serious symptoms. What else can you do if you, a loved one, or a friend is mentally unstable? Reaching for help through drugs seems to be the best answer most of the time.
It's my experience with my son that one should NEVER reduce brain meds without talking it over with your support system. When someone is mentally not okay, that person MUST have outside feedback.
Ideally the feedback/support system would consist of a psychiatrist who doesn't respond to all mental concerns by throwing drugs at the patient. It is our experience, unfortunately, that at the local Mental Health, Mental Retardation center in our town that drugs are tossed like candy because the doctors are overworked, the patients have no money, and everyone wants to solve the problem(s) as quick as possible.
Also, a feedback system ideally would consist of a therapist who is NOT tied to the drug business/culture in America. My son has such a therapist. Actually, she is nationally famous and consents to see my son for a 75 % reduced fee. And, if you have a spiritual path, then talk with your pastor, priest, rabbi, lama about everything.
Out of work, no insurance, and in desperate need, is why my son went to the public clinic-- MHMR. And still he must depend on them until Social Security Disability comes through or...what? ..what else is there for medical treatment in this country if you have no insurance and limited funds??
In my son's case, his father and I are also part of his support system, along with a sympathic General Practitioner MD who used to be head of MHMR until he got fed up with the drug culture within that bureaucracy. Plus, part of his support system includes alternative health practitioners who provide acupuncture, chiropractic care, homeopathy, etc. at greatly discounted rates--still, our finances are definitely being strained to the max these days.
With the help of his 'support' system, my son is reducing his Seroquel, approx. 10%-20 every 3-4 weeks.
He continues taking the 1200 mg. daily of Trileptal because this addresses the seizure problem and because he/we feel one should not monkey around with several different meds all at once.
So, how does the slow tapering work ? After the horrible attempt to go up to 600 mg in a week or two, my son ended up taking only 150 mg of Seroquel. He stayed at this level for two months..and he felt drugged the whole time, every day. Plus his memory, concentration were non-existent. He felt very dependent, etc. And of course there were always the nagging seizures, albeit reduced from what they started out to be.
The first reduction in Seroquel went from 150 to 125 mg. daily. and he stayed at 125 mg. for nearly a month. Then he reduced it to 100 mg. for 3 weeks.
Two days ago he lowered it to 75 mg. He intends to stay at this level for a month, maybe longer, since he is getting very low in the dosage.
Definitely he has had side effects from this withdrawal process. Many of them are the SAME as when he began taking the meds: He is Dizzy, nauseated, trembling in the mornings. And he stays that way for 3-4 hours. This last for about 2 weeks and then his brain adjusts to the dose, and he is okay. What is returning is his memory, his concentration and his sense of well-being.
Some mornings he looks how we imagine a heroine addict must appear. (he takes Seroquel at night before going to bed) The book, YOUR DRUG MAY BE YOUR PROBLEM, talks about these side effects, explains why they happen and it discusses the risks involved whether you stay on the meds or you go off them. There are definite risks either way. So be careful. Please be very careful.
The authors of the book, YOUR DRUG -- I can't locate my copy in the house & cannot remember the name of the authors--have their detractors. We've read what other professionals say about these men and their work; and still we've decided to try to lower the Seroquel as much as possible. AND at this point only the General Practitioner/MD knows what we are doing...not the MHMR psychiatrist.My son's paranoia, hallucinations--which I've since been told were never ' that severe'-- have not returned since the one time in July of last year. At the time he experienced them, he had just cold-turkey-quit a heavy 15-year tobacco addiction, had just been fired from his job, and was having some flashbacks to childhood trauma.
If you are contemplating reducing your meds, please get a support system in place, do research on the web, etc. Remember there are risks either way. And if you choose to go ahead then Go slow ! Also, please watch your diet, exercise, and learn how to meditate. We canNOT complain about how we feel if we are UNwilling to make some sacrifices.
A LOW dose of anything is better than the highest dose; yet please be wise.: If you need a powerful med or several meds at X level, then okay, make your peace with them and with yourself...and consider volunteering: helping someone (or a group of people) less fortunate than you is great medicine.
poster:tsoygal
thread:491212
URL: http://www.dr-bob.org/babble/wdrawl/20050424/msgs/494635.html