Seroquel gave me back pain while I was on it...not the severe sort of pain you have but a very intense uncomfortable pain and there is no doubt that it started when I was on the Seroquel and resolved when I got off it...when I went on it at first I would wake up in horrible pain and it would wear off during the day and come back when I slept. Seroquel also caused restless leg syndrome real bad...both those symptoms did go away when I stopped it...and mostly effected me while I slept and when I woke up.

I also, now off all neuroleptics, for several months after 20 years (I was on a considerably higher dose of Risperdal) have jerking limbs and strange neurological symptoms...it's almost like I'm convulsing...but I'm conscious...it's not true seizures...I don't know what it is...I've considered seeing a neurologist but haven't found anyone that sounds like they would know what they were doing...

Drugs are fucked. I'm sick as hell right now...in numerous ways---literally house-bound (all physical symptoms---I'm still withdrawing from the last of 6 drugs---so hopefully some of it will pass)...it's mind-boggling what these drugs do to us.

Frankly I don't even believe regular docs can help us...this is damage that they don't understand nor have they seen much of...we're the first generation of people who have taken these particular poisons.

My theory at this point is mitochondrial damage which may or may not resolve over time.

I already left this once:

Seroquel gave me back pain while I was on it...not the severe sort of pain you have but a very intense uncomfortable pain and there is no doubt that it started when I was on the Seroquel and resolved when I got off it...when I went on it at first I would wake up in horrible pain and it would wear off during the day and come back when I slept. Seroquel also caused restless leg syndrome real bad...both those symptoms did go away when I stopped it...and mostly effected me while I slept and when I woke up.

I also, now off all neuroleptics, for several months after 20 years (I was on a considerably higher dose of Risperdal) have jerking limbs and strange neurological symptoms...it's almost like I'm convulsing...but I'm conscious...it's not true seizures...I don't know what it is...I've considered seeing a neurologist but haven't found anyone that sounds like they would know what they were doing...

Drugs are fucked. I'm sick as hell right now...in numerous ways---literally house-bound (all physical symptoms---I'm still withdrawing from the last of 6 drugs---so hopefully some of it will pass)...it's mind-boggling what these drugs do to us.

Frankly I don't even believe regular docs can help us...this is damage that they don't understand nor have they seen much of...we're the first generation of people who have taken these particular poisons.

My theory at this point is mitochondrial damage which may or may not resolve over time.

oh, and for credibility's sake, I too have had doctors confirm this is drug damage but they don't know what the fuck to do about it....though some have some interesting ideas I'm still pursuing.

alternatives need to be started BEFORE the drug damage has been incurred...

I wrote this a few months ago. Lately I've been more and more convinced the symptoms I describe here are from Stelazine, which I was on from 1992 to 2003. The first couple years, I took Cogentin with it, which gave me terrible problems with acid reflux and aspirating at night (also happened while on Prilosec, though the Prilosec took daytime heartburn away).

Fibromyalgia Drug-Free Therapy, Just Relax and Keep Your Money

As I mention in that post, I was never diagnosed with Fibromyalgia, but my sister was and when we compare symptoms they are almost identical. I believe she still takes Seroquel, but has been on other meds I don't know about. She's never been on Stelazine, and I've never been on Seroquel. We're the only two out of five siblings who have these problems. I have to meditate/relax every day to keep the pain/discomfort symptoms under control, and the computer makes it much worse.

If I pay attention, I notice I'm tensing a lot, legs, arms, hands, legs.. but if I consciously think about, I can relax certain areas one at a time. For that reason, I don't consider it involuntary problems. I didn't have symptoms like these before the Stelazine, and they started and grew progressively worse a couple months when quit taking the Stelazine.

My back pain comes and goes, comes more when I do more standing/household chores. It's always on the left side (usually a sharp pain), a little below my shoulder blade. My left arm, hands, fingers, forearm (very tight with tension), "knots" in my elbow.. always gives me a worse time than my right. But I'm pretty sure that's related to how when I use the computer, my left arm is more tense with how it's placed when I'm reading, or concentrating or waiting for a task (on the computer) to complete.

Regarding my previous comment: I also have more clenching or grinding teeth at night, something I never had before the Stelazine. And When I wake up in the morning, I can tell I've been tensing them, like I'm clenching something in my sleep, sometimes I wake up and one hand is tightly holding the other. That initial "weakness" from the "exertion" goes away shortly after I wake up. I'm still left with the other symptoms. Basically before I started the meditation/relaxation techniques, I felt best in the morning after sleeping. Now, if I "relax" at night or before I go to bed, I'm actually in a bit more pain/discomfort in the morning because I'm tensing my arms during the night. I thought the tensing at night was just anxiety and nightmares, but again, something I don't remember doing before 92, before I started my "journey" with psychotropic meds.

I think if I was 2 days completely off the computer, there would be faster improvement, but it's very hard for me to stay off the computer for two days straight. Even 5 or ten minutes on the computer can give me a "flare-up." With the meditation/relaxation, I can recover a lot more quickly. Before that, it was very much pain/discomfort/tension for almost 4 years straight.

Andy,
I've been on Stelazine for more than a year and I'm on 200 mg Seroquel.

"Frankly I don't even believe regular docs can help us...this is damage that they don't understand nor have they seen much of...we're the first generation of people who have taken these particular poisons."
Gianna

"Although I have suspected a Seroquel connection with my back pain and limb tremor problems for a long time, I've not written about it at-length previously because I wanted to be reasonably sure of a connection before doing so."

"...but for now I am a bit too frustrated after writing this post to write anything else."
Philip

I'm also frustrated and perplex. Sometimes I doubt these tiny pills can make such changes in our bodies.
I've been constantly thinking about it all and it's quite disturbing that we have to figure out by ourselves that X drug caused Y.
There's no answer from regular docs such as "Yes, this drug has caused you this."

It would be of great help having these harms being validated. All side effects I've reported have been minimized or denied.

For the moment I'm trying hard to come to terms with all of this.
It's a hard job having your health problems being considered as "anedoctical" for the science sake.

All I know is that I was born healthy took some pills and... all I've been through and these changes my body (and perhaps my mind) has suffered...

What are these?
Officially nothing has happened.
"It seems as if we don't exist." I've read many times.

I've just woke up but I'm going to sleep again. I don't want to think about it.
And they are still prescribing these drugs... to toddlers.

Health became a commodity.

May I ask the dose of seroquel that you were taking? I know that such information does not always correlate patient to patient, however I was recently prescribed seroquel in addition to my other meds to control acute manic episodes in my otherwise well controlled bipolar disorder.

As a biomedical researcher and active participant in my health care, I've done some research on seroquel as well as all the other drugs... I'm loathe to discontinue the third med as it made a significant difference in day to day life (including me being able to keep my job) and I believe the 'micro' dose I am taking offers much less risk.

Thanks for the info as always. Keep up the excellent work!

Jo Ann...
Most of the time I was on Seroquel I only took 25 mg and it still caused the back pain and the restless legs...I did sometimes and for some periods of time take up to 100 mg...I was on it for about 3 years I guess...

my situation is clouded though by the fact that I was on up to 11 mg of Risperdal for many many years along with something from every other class of psychotropic...

my only serious issues now, almost off everything (6 drugs off 2 mg of Klonopin to go---already off 1mg) are phsyical as I deal with the psychological through holistic means...I"m saner then ever before...but my body, well it's hurt bad.

This is alarming. I used Seroquel for insomnia(samples from a PCP)in 2006 and into 2007. I went off of it cold turkey, not being able to cope with the horrific nightmares, and train wreck fog in the morning, and weight gain. The withdrawals were awful, same as they were for Prozac and Xanax.

What alarms me now is my recent severe muscle pain in my legs that I have/had attributed to my recent increase in exercise, but for someone who used to be athletic, I can describe this pain as "pain" not sore muscles. It's worse at night, to the point of causing no sleep, and the leg twitching. I've been to the doctor once, I got muscle relaxants for my back, but the legs are worse and not going away.

If this is a transcient/delayed body reaction to taking Seroquel, then this is outrageous, being I was rx'd it for insomnia makes it even more so.

But, this really makes me worry about my daughter, who had a doctor ramp her up to 800mg a day of Seroquel, before the Clozaril.

Thanks for sharing this.

Jo Ann,

Consider the following with respect to low dose seroquel:

Seroquel is a very effective antihistamine (H1 blocker) which is why it is so sedating. In fact, the only effect at low dose is sedation and orthostatis. Seroquel has virtually no 5-HT and D2 affinity below 200 mg. Low dose seroquel is basically an antihistamine not a milder anti-psychotic - it has zero anti-psychotic action.

Now, if an anti-histamine/sedation does help for whatever reason, you can buy one OTC at a markedly reduced cost with far fewer risks than taking a neuroleptic.

My opinion is that unless you are dangerously psychotic, you should avoid neuroleptics like the plague, and even then only be taken to manage an acute problem and carefully discontinued. Withdrawal is a significant issue for some people - something to keep in mind when more benign choices are available.

Neuroleptics really do worry me.

No seroquel experiences, but I experienced severe tremors, primarily in my hands, when withdrawing from Zyprexa. My doctor clearly attributed them to the withdrawal (which was done slowly by doctor's standards--2 months--but not slowly enough in reality) and her only offer of relief, of the tremors and the many many other withdrawal symptoms was to reinstate the drug. She was very clear that the only reason to reinstate at that point was that I was dependent on the drug. I chose not to, but only made it through because I'm god awful stubborn. The tremors, which were disabling and made it difficult to even hold a fork to eat, lasted 4 to 6 months, and then abated. I do still have tremors that crop up from time to time, though it is hard to know if they are connected.

Another thing that I now realize is that while on psych meds (including zyprexa, but also other things, tegretol, lamictal etc.), I fell a lot. I'd just be walking along and, bam, I'd lose my balance and fall. I was often made fun of me for being such a klutz. But now that I'm off everything for a couple years? I never fall. Turns out I'm moderately coordinated. Who knew?

I do hope you can find some relief.

I take 400mg of Seroquel, have done for 2 years, I get twitchiness, spasms and restless legs. Don't really compare to endless back pain, but it's crap.

Heck with Medwatch, used by one to ten percent of actual. Suggest filing as a plaintiff on contingency. Don't suggest a mass tort such as was done for Zyprexa. Those are designed to make the attorneys wealthy.

Stephany, increased exercise also increased my pain/discomfort/other issues. Even simply walking. The relaxation techniques solved it for me. I couldn't say if that would help you or not, I just wanted to point out how exercise, for me too, made my symptoms worse.

I forgot to mention in my previous comments that last year I finally decided to see a doctor about my problems. He referred me to a pain specialist. One thing he emphasized most was to quit smoking, because it's a neurotoxin. One thing that didn't come up: what about other drugs I'd been on since 1992? Prozac, Stelazine, Wellbutrin, Cogentin, Nortryptelene, Celexa, Effexor, Trazadone, Depakote... how many of those were neurotoxins? Coincidentally, I asked him for a scrip for Wellbutrin at the time to help me quit smoking. I had to get off the Wellbutrin after three weeks because I was sleeping 2-4 hours a days for about two weeks. (The Wellbutrin actually helped me meditate, and therefore helped my pain and other symptoms dissipate more rapidly.)

It is very alarming. Peter Breggin was on to this kind of damage before a lot of others and has a whole chapter on it in his book Brian-Crippling Treatments in Psychiatry but no real answer on what to do about it. And here's betting Seroquel is going to be advertised on television in no time. These are topics that normally would be relegated to science fiction and horror movies. Instead it's happening to friends, neighbors, and family. God save us.

Seroquel was toxic to me. At least that is how I would describe my reaction to it when I tried it on two different occasions: terrible shakes and muscle spasms after one or two doses. I quit it immediately. I've been on Zyprexa for a couple of years now. Besides the metabolic syndrome, I believe it gives me restless leg syndrome, which is a minor nuisance. I am ever vigilant about any other changes in the body. I am aware there is a risk for tardive dyskinesia. I hope it doesn't get any worse. I feel for those who have had problems with these drugs.

to answer an above question, i was mostly on 25 mgs, on occasion i took 50 mgs.

Philip,

I read your post and I am so sorry you suffered and continue to suffer from Seroquel.

The details were saddening as were the accounts of the suffering from the other folks too.

I am not a scientist but it seems these poisons not only damage the brain but also decay the integrity of neural pathways through the spine and then the rest of body. Premature degeneration. Accelerated decrepitude.

From my own experiences, uncontrollable twitching and spasms almost always means nerve damage or interference.

There probably is not whole lot in the cornucopia of western therapy that is going to have much luck with that. I can't think of anything off the top of my head immediately.

For what it's worth there is something that may or may not help.

In my early twenties I began experiencing a variety of neuromuscular problems in my right arm, shoulder and back. Most likely because of some accidents I had had in the past. I worked at a factory doing manual repetitive labor and I too had no insurance. I could not afford to not have my body work right or I would be disabled.

Desperate for any kind of self therapy I learned a Chinese therapy called chi gung/qi gong from a guy who had regenerated his spine after shattering it in a violent car wreck with this material.

I paid money up front to the learn the techniques and then I practiced them on my own for hours every day.

The chi gung eventually repaired me enough to go back to work and in time regrew the nerves in my fingers that once been smashed in a machine. It's resolved several spinal and myofascial issues.

I still use it to this day both as preventative maintenance and to deal with any periodic flare ups and aftershocks.

It is the only therapy I know that can help repattern and regrow nerve function that you can perform on yourself as time permits. Feldenkrais method might help too but it isn't cheap.

Perhaps that stuff might help some of you.
Learning tai chi can help too. tai chi is a form of chi gung in and of itself.

Best wishes Philip

While I've never experienced back pain as a withdrawal symptom, I am very much familiar with the territory: I went off Abilify about three weeks ago, and oh, the itching! It was horrible! It would wake me up at two in the morning, and I wouldn't be able to sleep for the rest of the night. It was very uncomfortable. My dad gave me some prescription meds, some antihistamine, but it did very little. Yeah, it was bad. About a week ago, it finally went away. That was fortunate. Anyway, I know what it's like -- even though I didn't have anything nearly as bad as what you have -- to have horrible withdrawal, or post-withdrawal side effects. Feel better!

Philip Dawdy responds: just to clarify gwen, i didn't experience back pain as a withdrawal issue but as a result of taking the drug and lingering problems years after taking the drug.

Seroxat (Paxil) causes this shit too, psych drugs cause muscle spasms and jerking, constant trauma to the body in this way leads to a fucked up muscular-skeletal system! I had it myself..

Damn these fucking psychiatrists and their drug company sponsors...

curiously, benadryl, another antihystamine, is also an anticholingergic, and is commonly prescribed as anticholinergic to accompany the older antipsychotics such as stelazine. congentin is was probably number one, but also artane and benedryl and i cannot remember any other most common anticholinergics.

as far as i know, those would work to prevent short-term EPS, but i don't know about the TD that emerges after-the-fact, not short-term.

maybe take a couple benedryl to see if there is any relief.

also, the AIMS scale can be repeated indefinitely. it could be used to find assocaitions betw TD type sx and other things such as smoking - such as - try to quit smoking for 3 days and keep completing the AIMS a couple times per day.

there may be online info on how to judge aims, since it is to some degree a judgment call - ex: you hold out your hands straight in front of you, and a trained rater notes the degree of tremor - none, a little, etc.

self-rating would not quite be considered valid or legit, but it might show some patterns, such as worse when smoking 20+ cigs a day versus 2 or 3 per day, etc., better if you take a benadryl, etc.

artane may be addictive so i would not play with that unless i studied up on it some.

why seroqule for sleep when benadryl does the same thing? i.e., both are antihystamines at low doses, eliciting sleep? well, cuz diphenhydramine is no longer under patent.

always 'follow the money.'

Just sharing a link...

Mayo Clinic Blog Focuses On Patient Experiences

http://wcco.com/health/mayo.clinic.blog.2.916830.html (Jan 24, 2009)

The Mayo Clinic has started a blog focusing on patient experiences.

The blog is called "Sharing Mayo Clinic." It went online Thursday.

Mayo says it will focus on positive patient experiences. But it will also accept criticism, along with family stories and posts from Mayo employees.
[...]

I'm no fan of neuroleptics for sleep as you all know but suggesting you replace seroquel with benadryl is silly...benadryl when I was using meds to sleep might put me out for an hour. 25 mg of Seroquel put me out for 14...sorry there is no comparison other than they are both antihistimines...

I've found completely natural ways of helping me sleep and I sleep full nights with no side effects. But for some reason most people never want to try anything that hasn't been tried in clinical trials even when they bitch and moan about how flawed the trials are.

The way all the hard core anti-pharma people are anti-nutient too has me totally flummoxed.

My body is poisoned by drugs and yes, I'm sick...but my mind and several other systems that were a mess before I changed diet and nutients work great now...(no more IBS, vastly improved gyno system, no more psoriasis, among other things) Diet and nutrients heal!

unfortunately they may not heal severe drug damage which is outside the norm. But for many "chronic" health problems they heal...

but too many people don't want to do things like Jane above suggests or not eat crap and make other changes.

Yip, I was on a low dose of seroquel - 100mg - for the most part and then 25mg for a period.
Experienced the back problems while on it and not as a withdrawal thing.
Apart from the on-going back pain, I'm Pretty sure it's left me with this random whiplash jolt type thing in my back/neck. The whiplash is always to the left. eldritch.

For me on Seroquel, the most obvious adverse effect was massive weight gain, which is just impossible to lose completely even five years off Seroquel. However, the most awful was the suicidality from this drug: I thought that it was from my "illness" but after I got off the drug, the suicidality went away and never came back. Seroquel is on the list of drugs causing suicidality, whch are mainly antidepressant drugs, although I guess antiepileptic drugs are on it on, too. And yes, I got massive pain, which I still have, especially back and neck pain. Right now it is horrible and I move around and move my neck constantly to loosen it up. I was watching a film of a person w tardive dyskinisia and I saw the person moving around like I do and I was struck by the similariites.

I don't know if this is common...but When prescribing Seroquel, I've heard from others of doctors telling patients intially to up their dose (from zero) 50mgs per day until they wake up rigid in the morning. The dose the patient should take is the dose they had the day before they woke up rigid...if you get what i mean. Muscle rigidity = bad.

Andy, thanks for your story about the exercise, that's very helpful to know.

Paul speaks of anti histamine--I was on 75 mg.of Seroquel (for the insomnia, which with the horrific nightmares made sleep awful)once off of the Seroquel-- Benedryl worked for the insomnia, except it was w/out nightmares, without 14 hour train wreck the next day (brain fog) and of course no antipsychotic side effects.

My primary long-term problem that I attribute to psych meds is what seems to be chronic low-level akathisia, a steady sense of having drank 20 cups of coffee. It feels like my whole body is vibrating, like an electrical current running through my body.

It prevents me from getting more than about 4 hours of sleep a night. It started with Paxil. It was worst with a sudden dose change of Seroquel and during cold-turkey withdrawal. Now almost 3 years off all meds, this is still with me. I can't imagine having a full night of sleep.

Mitochondrial Damage:
Supplements of Alpha-lipoic acid, L-carnitine and Co-enzyme Q10 to restore mitrochondrial function http://articles.latimes.com/2008/aug/25/health/he-skeptic25

One protocol in an individual with mitochondrial disease called for the following:
Alpha-lipoic Acid (ALA) 300 mg 2x/day
Co-Q-10 200 mg 2x/day
Creatine Monohydrate powder 2.5 gm 2x/day

Melatonin for sleep...

Tardive Dyskinesia and nutrition
http://www.alternativementalhealth.com/articles/td.htm

Medication-related weight gain reversed with hCG - pdf
http://www.MedicalVeritas.com/hCGcase.pdf

Hi Philip,

May I know what was the dosage of Seroquel you were taking? I've been taking atypical antipsychotics (first Risperdal for about one and a half years, and then Seroquel since last September) for anxiety for almost two years now, with a brief lull of about two months where I refused to take them because I felt my lips starting to twitch.

I'm scared that my lips are starting to twitch again and have been requesting to taper down the medications, but my new psychiatrist (who had been seeing me for three months at my last visit) keeps saying that it's too soon for him to make any changes to my medication, since he's only seen me for, I quote, "a short while".

I've also been requesting a liver function and pancreatic function test for the 600mg of Sodium Valproate I'm taking a day, but he keeps saying that it's not necessary. He says he'll consider giving me one within the next six months to a year, but it's really not urgent. I feel trapped. What do you suggest I do?

Oh, and by the way, I'm nineteen. Am I still considered a "child"? I had just turned seventeen when I was first prescribed with Risperdal for anxiety.

Thanks!
Emily

Emily, your psychiatrist is full of shit if you excuse my language. But that attitude greatly pisses me off when it isn't his life that is at stake.



Anyway, it your right to choose to taper off and your psychiatrist needs to respect your rights. If he still refuses, find another doctor.



Same with test you are requesting. By the time he orders the test, it might be too late.


Is this a psychiatrist you see at college or in private practice?


Regarding anxiety, you might want to google free CBT programs. If you need to take something, I would try magnesium, fish oil capsules, and or vitamin C.


I am just stunned that you would be put on an antipsychotic for anxiety.
,

Anyway, I know psychiatrists can be intimidating but please don't feel trapped. Your life is at stake and you need to take control as a patient and let the psychiatrist know that he/she works for you and not the other way around. Easier said than done, I know but it is a step you have to take.

Emily:

I agree with AA's comments. There is absolutely no reason for someone with only anxiety to be put on an atypical antipsychotic or a mood stabilizer, and there is even less reason to be refused routine bloodwork to assess for organ damage associated with those medications. And if you're on Valproate, I would also have your CBC and reproductive hormones be checked, because they could be affected by it, too.

Emily,
I don't know how long you've been coming here, but I just want to point out that dguller is a psychiatrist so you now have the opinion of a card-carrying professional. It really is second-opinion or change-doctor time, I think. Your health is at stake.
Sherry
PS: I trust you don't mind my pointing out your occupation, dguller. Just thought it might be helpful here.

Sherry:

No worries. :)

Emily,

I would stongly urge to treat psychiatrists as you would used cars: shop around, don't settle if you don't like what you hear, get rid of a lemon straight away, and never blame yourself because you have a crap car.

I'd prefer to trust my instincts and err rather than constantly second guessing myself. Always get a second opinion, a third, and a fourth if necessary. Psychotropics can permanently affect you in very negative ways. Be cautious and question everyhting. If your doctor isn't receptive to your probes, dump him/her and keep searching. You'll find someone, but it may take some time and effort.

I've found that many functional medicine docs are an open minded and inquisitive lot - YMMV, of course.

Paul, the FAKE DOCTOR - My new sig!!

Dear Fake Doctor Paul,
What's a functional medicine doc?
Sherry

Sherry,

Functional medicine is also known as integrative or holistic medicine. Here's a link to a group that has a decent write up.

http://www.functionalmedicine.org/about/whatis.asp

My own take is that it is a great approach to health for both doctors and patients, especially those with chronic conditions. I can't tell you how many people are being medicated with psychotropics who are actually suffering from hypothyroidism, vitamin d deficiency, and magnesium deficiency. It's also amazing how many people take supplements which are promptly excreted because of their form and consumption vehicle. Magnesium, for example, is usually found as the hydroxide form which has a high binding energy compared to glycinate or citrate forms. The hydroxide form is poorly absorbed and further chelated by milk which many people take with their morning vitamins.

Some things functional med has taught us: your diet matters, exercise matters, trauma matters, how we process these stimuli matters, metabolic and endocrine systems matters, inflammation matters, immunology matters. Labels do not matter. Labels don't help you get well. Labels do not help you stay well.

It would be great if all doctors (MD's and psychiatrists included)practiced that way Paul. Treating the whole body, and possibly avoiding being misdiagnosed a psych disorder when in fact it could be hormonal or endocrinology issues, which happen quite often.

Paul,
Ha, ha, have you been reading my postings? I spent 30 years in the clutches of the psychiatric "profession". Fortunately, I wasn't a terribly compliant person. I'd been taught to avoid taking pills unless they made a profound positive difference. Psych meds didn't, of course, so I never stayed on any of them for long. Which caused all sorts of nasty abuse from the psychiatrists to rain on my head.

I do have PTSD, something the mental health industry seems totally unable to help with, despite their claims to the contrary. I know dozens of people like me who've learned how to manage their symptoms without the help of the pill pushers.

In the end, my main problem turned out to be hypothyroidism and Vitamin D deficiency. My doctor actually IS a holistic doc. He's a very nice guy, runs *the* "integrative medicine" practice in the largest nearby city. In my experience this has meant he blows me off in the nicest possible way while spending years trying to treat my hypothyroidism with sugar pills. I've known since my late twenties that I was hypothyroid--the laundry list of symptoms made it clear. I pushed regularly for thyroid testing and was told I was "low normal". When I'd ask about my symptoms I was offered more psych drugs. My doc, the holistic guy, was at least nice about it, which is why he's still my doc.

The Vitamin D deficiency I figured out on my own, with the help of some Alaskans on a soapmaking list I'm on. They heard me whining about SAD and wrote to suggest Vit. D supplements. I cannot believe the difference it's made. Between that and the thyroid meds it's been like rising from the dead.

I haven't bothered to tell my doctor about the Vit. D. He doesn't seem to have learned anything from my thyroid experience. I have to endure the stupid blood tests in order to get my ticket punched to get the magic piece of paper so I can get the medication I need but I dose myself according to my symptoms, not the test. I do not fiddle with the dosage much, have only changed it on my own once. But I place absolutely no credence in the test which was used to justify withholding needed treatment for 30 years.

If there was some reliable way to order my medication without involving the interference of doctors I would do so. I'm afraid my experience with holistic medicine really hasn't been all that much better than mainstream medicine. Although my doctor is a really stand-up guy, who has stuck his neck out for me more than once, I don't think he knows what he's doing any more than any other doc. He is, however, willing to back off when I tell him to, which is better than the other ones who can't seem to leave things alone but always have to be making a bad situation worse.

Are you an ND?
Sherry

Sherry,

Interesting comments. Hypothyroidism can be bedeviling. I'm no longer convinced that current labs are adequate because many people appear to have test results within normal ranges but are benefiting from replacement therapy. The whole concept of normal ranges is misleading, imo. I was involved in some research that looked at normal ranges and AEs. We found that although groups might well define a "normal range", there were many individuals whose specific normal range laid outside the group - some in very unexpected ways too. You might very well have what for you is a substantially elevated TSH but is considered normal by the lab and hence your physician.

Adrenal function is also roundly ignored in my experience. If you're exhausted, tired, and can't get up in the morning do you wonder why you haven't had your cortisol level checked? Atypicals and SSRIs really screw with your adrenals and thyroid and can lead to insufficiency. Adrenal insufficiency looks a lot like depression, but it can be tested for it one bothers to order the labs...

It's really hard to find some one that gets it. Too many physicians cannot abide a highly educated and involved patient. There's something about ego or entitlement that gets in the way.

The problem is once you get referred to a FAKE DOCTOR there is a presumption you are there because you don't have a medical condition to fix...

Functional medicine isn't immune to this, but they seem (as a group) to be a bit more inquisitive and to look across organizational boundaries. I think it's a good approach. Let's hope it doesn't victim to hype.

Btw, I'm am originally a physicist by training though not exclusively - I branched out a bit.

Paul

Paul,
My doc did a blood test for the cortisol after they changed the parameters of thyroid normal range and started treating me for the hypothyroidism. It's impossible for me to place much credence in the cortisol results after all these years in which my thyroid test results came back "normal".

I have a history of severe abuse, with (surprise) PTSD. It's really difficult for me, knowing my history, to imagine my cortisol isn't high, but I've managed to bring my anxiety level down over the years so I'm not going to worry about it. I've learned that half an ativan reboots my CNS on the rare occasions (two or three times a year) I get flat-out triggered. Once my sympathetic (parasympathetic?) NS gets cranked I can't bring it down myself. Yet. (I hope to learn.)

The situation got a bit complicated between my doc and I because about five years ago he became convinced I had Lyme disease. The results were negative according to MSM, but maybe equivical or positive according to his homeopathic guidelines. Since my symptoms predated my tick bite (by decades) I knew I didn't have Lyme. It was one thing to take his sugar pills but I wasn't about to do something as potentially dangerous as long-term or high dose antibiotics on the off chance Lyme might be the problem. He is a dear, sweet man who only wants to help, but we got to the point we could barely speak. I've been seeing his PA for the past year and a half. Sooner or later I'll drop in to see him and we'll patch things up. He really does get an A for effort. But even when he was in MSM his grasp of basic science always seemed kind of sketchy to me. (I was a zoology major.)

At this point my one big problem is lack of stamina and agoraphobia, the latter of which I do think is psychological. Oddly, I've never been agoraphobic in Ireland, only in the US. I lived in Ireland in my twenties and visit often. Never a lick of agoraphobia. We plan to move there in a few years and I cannot wait. My stamina has improved gradually and I now work 8-10 hours a week. Of course, at my age it could be um, age that's the problem.

I know I snark a lot here, but I'm so bloody happy to feel so much better that I don't snark much in my daily life. But my anger really is there and is justified. This is about the only place I have to express it and I am grateful as hell for that.

Thanks for your input, Paul. There are so many intelligent, thoughtful people here. So different from the common belief that we're a bunch of dangerous drooling idiots.
Sherry

Sherry,

I'd continue to have your cortisol checked as long as you're on thyroid replacement.

Cortisol measurement is probably best done in a clinic setting overnight where saliva and urine can be collected over 24 hours. Blood tests aren't as reliable in practice. A single measurement isn't terribly conclusive unless it has been done very carefully. I've seen cosyntropin test samples left out for 20 minutes without ice before evening being sent to the lab.

I'm truly saddened by the number of people suffering from hormonal or endocrine mischief that are subjected to psychiatric treatments because of incompetence and laziness.

Paul

antipsychotic for anxiety.

they use antipsychotics in NZ as THE drug for anxiety now-Its how I ended up on this one-

Iam on low-dose Valium cos of the mussel stiffness-

The main reasons I never did take this class of drugs 4 long -they always near snapped my back-

Iam only on like 25 mgs at night 2 help me sleep-When I didn’t know any better I took these days at a high dose for over a year-back issues-heck-I told my psy- She said "no that cant be right"

-WHY don’t they listen-

leg twitching as well-spasms on my abs-also stiff
neck too the point I can crack it-like I twist
my neck and it makes ugly noises-Never had this
issue be4 -

I really hate these drugs-I only take the 25mgs cos of PTSD nightmares-Iam going looking for another sleeping aid-Ive bin thinking of getting OFF these drugs-

I can take the SSRI shocks-becos for me the positives out weigh the negatives-OFF an ssri Iam back too OCD systems with in days-also the ssri has helped me with my eating disorder-but these Muppet Drugs they’re pushing-they’re shite for me- The hang over even on 25mgs is shite for me-is like brail in the morning Iam so not with it-

Paul,
I had the sense the cortisol test was bogus so I didn't pay much attention to it. At that poin, too, I wasn't looking for yet another disability.

I don't think the PA I'm seeing or my doctor (her boss) have the expertise you describe as needed to do that job. And I'm so exhausted from chasing my tail all these years that I'll take what I can get in terms of recovery. It seems like seeking for help from doctors so often ends in a train wreck for me.

And here I am, doing well on the thyroid hormone/Vit. D. I can live with the rest of my stuff easier than the thought of trying to find someone who might be able to deal with it. Also, I'm on Medicare which makes it difficult. Very few alternative practitioners take Medicare. My doctor is the big cheese of integrative medicine in my area.

I'm not even sure I have a clue what "normal" is at this point. I would love to be able to work full time but I simply don't have the stamina at this point. Just being able to get up, get dressed, walk around all day and stay out of bed, read a book, not attempt suicide, fill the bird feeers, be free of all consuming depression seems like a friggin' miracle to me.

Thank you so much for your suggestions and interest and the work you do.
Sherry

Dear AA, dguller, Sherry and Paul,

Apologies on being so late checking back; it's been a busy week for me. Thank you so much for all your advice; I really appreciate it. I will try to see if I can get a new doctor.

AA: I'm seeing a college psychiatrist. He's also has his own private practice, though, and comes to the college only on specific days of the week. My former psychiatrist was in private practice. I couldn't believe that I was being prescribed an antipsychotic for anxiety too, when I found out that it wasn't common practice. I didn't even know that until about one and a half years into taking Risperdal, when I read it in a book. The psychiatrist who first prescribed it to me didn't even tell me that it was an antipsychotic, only something to "help with my thinking", resulting in me spending the two weeks between my first and second appointment panicking that my psychiatrist thought I had schizophrenia but wasn't telling me.

dguller: The sodium valproate was prescribed to me last year when my previous doctor suspected that I have bipolar II disorder (I was already on Risperdal for just under a year and a half for anxiety by this time, though), although my current psychologist does not think I do have it after all, so that one wasn't for anxiety. And thank you, you're the first psychiatrist who's agreed with me on this issue. I usually feel so exasperated trying to get my point across to psychiatrists.

Sherry: I've been hanging around here since about October last year, and figured out dguller's profession somewhere along the way, but thanks for the heads-up all the same. I hope you continue to get better!

Paul: Will keep that analogy in mind! And regarding questioning everything (which is a principle I agree with), there's an interesting story from my hospitalisation experience. I basically questioned everything while I was in there (all reasonable questions, of course, and if I got a satisfactory answer then I would stop). In the end, my diagnosis on discharge read "atypical depression with borderline traits". My first psychiatrist has repeatedly assured me that I do not have borderline personality disorder, and the psychologist I'm seeing now (who is absolutely wonderful) concurs that he does not think that I have borderline personality disorder.

Of course, the junior psychiatrist who wrote in my diagnosis on discharge may also have been reacting to my being furious at one of the junior psychiatrists who was treating me for questioning if the psychology department knew I had a psychological disorder, and did I really think I should be a psychiatrist, considering that I had psychological problems? He also gave the response, "you're [a student from a good school], and now you're in a mental ward, shouldn't you be depressed?" when I asked him why he thought I was depressed and not manic — I think I was in a mixed state at the time I self-harmed because of the Lexapro, really, since SSRIs can induce mixed states — so I think I had every right to be utterly furious with his stigmatising, misguided and patronising comments. To diagnose me as having "borderline traits" was pejorative and only added insult to injury, and might have even been an attempt to discredit any complaints that I was planning on lodging; in other words, a power play and abuse of power.

Of course, he might have thought I possessed "borderline traits" because of my self-harm incident, but even then that's a myth that is soon shattered if mental health professionals would just pick up a book on self-harm. And, at any rate, he'd never inquired if I had any of the other features of borderline personality disorder, and had never even mentioned anything about "borderline traits" to me while I was in the hospital. I only found out because the college psychiatrist read out the correspondence from the hospital to me.

Sorry if there are any sentences that don't flow correctly; I'm suffering from insomnia since I refused to take Seroquel last night and I really should be going to bed soon. (It's 7.20am here.)

Thank you all!
Emily

Stephany:

I'm sorry to hear about you being prescribed Seroquel for insomnia and having such bad side effects. My mother was prescribed an antipsychotic for insomnia too by a non-psychiatric physician. She has no mental health history. She said it made her feel weird, as if she were walking on air. She refused to take it. I think it's frightening how these drugs are being thought of as so "mild and gentle" that they can be prescribed for things like insomnia and anxiety.

Emily,

You are indeed correct. Questioning anything in an in-patient setting can be deleterious. This approach is only useful when you are free to walk away - mea culpa.

You have to be very careful if you are an in-patient as all your words and actions are recorded and may well be used to confine you or medicate you against your wishes. I'm not suggestion you ask no questions in this setting, but you must remain ever so aware of where you are and what the medical establishment is looking for: COMPLIANCE.

Paul

I'm schizophrenic and I have a positive opinion about Seroquel. I've been taking Seroquel for 5 years and I've never felt so free from problems. I still have hallucinations occasionally but now I'm able to know what is real or not real. All I've heard here are from people who are not as ill as I. I'm having some back pain just recently and I'm going to see my primary doctor soon. But if it turns out to be Seroquel as the problem I'll still take it. There is nothing out on the market that is similar to it and believe me I've been on them all including Thorizine(major side effects). Christine

In regards to the side effects of Seroquel... okay, some years back I started on Lithium which within hours made me spiral into horrendous anxiety and was therefore put on Paxil to control it (3 days after starting Lithium). Also, I was given Seroquel to immediately help me sleep through the night. All these drugs gave me all the classic side effects. I eventually refused to continue on Paxil because of the side effects and the dr. allowed that if I agreed to use the Seroquel to help me sleep through my anxiety. So for a couple years I took 25-100 mgs of Seroquel every night (usually 50mgs) along with the Lithium which worked fabulous to keep me asleep but gave me all the bad side effects. Of course. Here is my point...

I went off Lithium 3 years ago but continued the Seroquel for another year tapering off. Then I stopped taking that too and haven't for a couple years. I no longer take any of these meds and I no longer suffer anxiety or mania or depression. So far. But, I am convinced that the Seroquel gave me these long term lingering side effects: occasional heart palpitations, occasional squishy sounds in my head like something is draining, resistance to weight loss, sensitive kidneys, and most importantly memory loss and SERIOUS short term memory loss.

I wish I could find more info on people's long term effects after going off Seroquel for an extended period of time. I can't be the only one.

I am also having severe back pain with Seroquel. It is prescribed for me, as an atypical sleep medication because I do not respond to any mainstream sleep medications.

Could someone PLEASE tell me an alternative to Seroquel?

I have been on Seroquel for about 3 and a half years, and I am currently taking 300mg for insomnia. Since I have started taking it, I have had TMJ which progressed to head aches, then to neck pain, then severe head and neck pain along with stiffness in my muscles throughout my body. I cannot sleep without it, but the longer I have been taking it, the more pain I am in, which inhibits me from sleeping. I know the solution is to get off Seroquel, but my question is how? What has worked and what hasn't? I now live with chronic pain and I am only 21 years old. I have been to every doctor, therapist, and natural doctor and I have yet to find a solution.

Hi Dorian, as one who is suffering from severe insomnia thanks to tapering off of Doxepin, your story is why hell would freeze over before I ever took Seroquel. I am so sorry that you're having those difficulties.

Here is how to taper it. Please keep in mind I am not a doctor but I have used this advice to taper from 4 meds down to 1. Meds should be tapered at 10% of current dose every 3 to 6 weeks. With Seroquel, you might need to go more slowly.

If Seroquel can be crushed (check with pharmacist), buy a .001g scale on Ebay that runs between $15.00 and $30.00. Then go to a place like Vitacost and buy empty gelatin capsules. You also need a pill crusher,

Crush the pill you want to made the reduction from such as a 10mg pill. Put in capsule and weigh it. Take 90% - 95% of dose and that is the new amount you need to take. Put excess in storage capsule that most pill crushers have to be used for a future measurement.

By the way, with these scales, you might want settle for a range such as .193 to .195 grams as it is hard to hit the right number exactly and it doesn't seem to make a difference. Also, weigh it twice to make sure it is accurate.

If you can't crush the Seroquel, use the scale to weigh your dose. Obviously, that make is alot harder to an accurate measurement but it can be done.

Another option is to use a compound pharmacist. They will make the doses you can't get at your local CVS pharmacy. The downside is that not all insurance companies allow you to do this and you may have to pay up front and get reimbursement later. I did this with Wellbutrin XL by the way and it worked great. Here is a link to find a local one:

http://www.findings.net/sucompounding.html

As far as pain, have you tried fish oil? I would also do a google search of pain and natural remedies. I think curcumin will be listed.

Good luck.