Intro and Taper Question

[AnxiousMutt]

First of all I want to thank all the brave folks who contribute to this site. I know if it’s made a difference for me to read the everyone's experiences here, it must be doing wonderful things for others as well. So I figure it's time to add my story too.

I’ve been on Paxil for 10 years. I had always been very anxious at work when it came to meetings or presentations. When required to speak I hated the fact I would sound nervous, turn red and feel like my heart was going to jump out of my chest. While talking I would be internally admonishing myself for being such a fool. After every such occasion I would question my self-worth which affected every aspect of my life. If a meeting was scheduled for the following week, I would obsess, negatively, over it every minute until it came to pass. This was the pattern for the first 10 years of my working life. The crazy part was that outside of work, I was an upbeat, fun guy (unless an upcoming meeting was in store ).

It all came to a head at a regional team meeting when I was randomly selected to do some role playing on the spot. The rush of adrenaline and my lack of confidence resulted in a panic attack right in front of all my peers. I felt like the biggest fool in the world, and even thinking back about it now makes me cringe. I had read and tried all the self help stuff throughout the years with varying degrees of success, but this latest failure was too much for me. The subsequent spiral of doubt and depression led me to seek out a solution of the pill kind.

Enter Paxil. Ever since taking it I haven’t worried about speaking in meetings and doing presentations in front of clients, but as in most things there is a price to pay for that.

That price to me is the ever present feeling of not caring about anything. It’s like I care but I really don’t care, if that makes any sense. As I told my wife, for the most part I just feel dead inside. The trade-off between that feeling and the moments of anxiousness are no longer worth it to me. I want to be present. I want to feel. Or at least I do now, in this moment. I hope to remember that during this journey.

After thinking about the decision to wean myself off of Paxil for the better part of two years I finally approached my doctor. The reason for hesitation was a prior attempt at switching from Paxil to Effexor per his recommendation a few years earlier. The result was disastrous as I lay in a fetal position for a week with massive headaches, sweats, nausea and what seems like every other symptom listed on this site. This happened with a one day on paxil, the next one on Effexor protocol.

Anyway, I’ve been nervous about getting off of this ever since (On a side note, that’s when I first bookmarked this site. Here it is, three years later and I’m ready!).

So that's my story on why I'm here, and leads me to a question on tapering.

My doctor has recommended I alternate between 20 mg and 10 mg every day. I started in early/mid December and he suggested we do this until the end of February. Then the intent is then to go to 15 and 10.

Is the 20/10 strategy effective or should I be pinpointing the 18mg more precisely per the spreadsheet I've found here? And if so, how are folks doing the precise measurement if they don’t have liquid paxil?

Once again thanks to all and I look forward to the journey.

[scotty]

Alternating doses is usually a hot mess. You put yourself in and out of withdrawal constantly. The key to successful weaning is consistent daily dosing. You're brain has had a consistent amount of paxil on a daily basis for years...changing that pattern doesn't work.

Compounding pharmacies can make any dose you need(you do need a script) and liquid is always the easiest way to go. Some use scales to wean, when they have a doc who won't prescribe liquid, or if it's not available in your country.

[AnxiousMutt]

Thanks Laurie.

I just left a message for my doctor inquiring about liquid paxil.

Over the past month I've had days of dizziness, anxiousness and a little nausea thrown in but other days where I feel great...like today.

It makes sense to try to get exact dosages when you can. Thanks for the prod forward.

[cinephile]

Anxiousmutt:

I don't know why, but your story really resonated with me. It's not that your case is unusual (in fact, it is depressingly common!), but I just like your even, matter-of-fact tone. And it seems you've done some real soul-searching.

I'm outraged FOR YOU that you were put on a hardcore pharmaceutical like Paxil for a common problem (public speaking). To use a shop-worn metaphor in these parts, it was like your doctor telling you to drive a Ferrari in a 35mph speed zone. Or perhaps a better metaphor: it's like being prescribed chemo or radiation to remove a wart. It's just overkill. What WOULD have probably worked better was cognitive behavioral therapy or other kinds of talk therapy as this is such a common problem.

And as you've said, Paxil in the long run isn't worth it. It really is like any street drug because after the honeymoon period is over, it takes back whatever it gives AND THEN SOME. Soon not being anxious or depressed isn't worth it anymore if it means losing your humanity.

Another parallel with street drugs is when you self-medicate to ease the pain (either with street drugs or pharmaceutical) you just delay the inevitable of DEALING with your problems. Keep this in mind because you will most likely be anxious again when you're off the Paxil and will need to look into getting that addressed naturally. And, unlike a pill, it will take discipline and dedication. But I'm sure you're willing to do that.

I'm speaking from my experience, but let me give you a heads up of some of challenges you may face with your taper. *I advise you print this out and read it at your leisure BEFORE you taper. That way you can read it at your leisure instead of grasping at it with a white-knuckle grip when you're in the throes of withdrawal.

1) Going against doctor's advice -- This is a MAJOR problem with many of us here. Most doctors STILL do not appreciate how difficult it is to get off this stuff and their tapering schedules are either much too fast or just plain wrong like the alternate days dosing that your doctor suggested. Trust us, we are the real experts on this because we HAVE TO BE -- we simply couldn't suffer due to our doctors' outrageous tapering schedules. Over the years we have found the 10% reductions (or less) every 3-6 weeks to be the most reliable tapering schedule as it gives your brain time to heal and catch up between dose reductions. Keep in mind this tapering schedule does not mean SYMPTOM FREE. You may still have symptoms but they will most likely be milder and less persistent. So don't get discouraged if you have some discomfort.

Be prepared for your doctor to be adversarial, confused, skeptical, or downright angry at your decision to taper so slowly. This may be shattering for you as you may have had a great relationship with your doctor beforehand when he was able to easily fix whatever other ailments you had. One of the hardest things for a lot of people to deal with in withdrawal is the sense of betrayal they have by the medical community. When we're in good health we like to believe that when we get sick we'll be taken care of. Not so in this case. These meds are FAR more complex in their action (in fact, science STILL doesn't know how they work) than any doctor can understand, and often the doctors' solutions add up to the blind leading the blind. This is, of course, a terrifying realization (especially when you're in the grips of a much too fast taper!), but you can take matters into your own hands and taper via our schedule and forever after this experience be a MUCH savvier health care consumer and realize the HUGE flaws our dying health care system has. By realizing these flaws, you will be avoiding future disasters with unnecessary prescription meds and seek out more natural, low-impact treatments (Cognitive Behavioral Therapy, light exercise, acupuncture, herbal therapy, meditation, etc).

Also, do NOT listen to psychiatrists who are convinced you have new disorders like bipolar because of your withdrawal (unless, of course, you have previously been diagnosed). More than likely it is NOT bipolar (by the way, bipolar is now the new black. What I mean is, it's the hot new psych diagnosis. It's as popular in its diagnosis as depression was 15 years ago). You're just having the usual crazy ups and downs from withdrawal, and adding profound psych meds to the mix will make it worse. There is no shortage of people on this site who are stuck on a cocktail of psych meds for this very reason: their withdrawal was treated with everything from benzos, antipsychotics and sleep meds and now they are stuck on THOSE when all of this could have been avoided if they tapered more slowly and realized their symptoms were WITHDRAWAL, not actual psych conditions.

2) Respect -- and fear -- the power of benzos - Have you ever been prescribed a benzo for your anxiety? If you're not sure, think back if your doc ever prescribed you meds like Ativan, Xanax, Klonopin, or Valium. These are benzodiazapine medications and are often prescribed for anxiety and panic. BUT, just like SSRIs, they are jet-fuel grade solutions to common problems and can wreak havoc with your nervous system. In fact, some people consider it even WORSE to get off Benzos than SSRIs. It IS true that you can die from cold-turkeying benzos due to extreme seizures. This won't happen with SSRIs. But of course this is an extreme case and usually only occurs when a patient has been on high doses of them for a long period of time and abruptly quits.

I mention benzos because your doctor may prescribe them if you're anxious during your withdrawal. Personally, I believe benzos CAN be useful if used ever so sparingly (that is, only during the absolute WORST and unbearable moments of panic). Chances are you won't even need them because your slow taper will prevent you from having panic. BUT if you do need it, use it sparingly and never more than a week straight, as you start to run a risk of dependence on the benzo if you take it daily and then you'd be looking forward to withdrawing from TWO nasty psych drugs.

There is no shortage of natural remedies for alleviating anxiety, and I'll mention those shortly.

3) Psyching yourself up by reading too much -- Please, PLEASE don't agonize over your situation by googling up a storm and reading horror stories. Yep, we've all been there and yep, we all regret it as it does nothing but add more anxiety and make tapering even harder. And remember that places like Paxilprogress are heavily skewed towards people who are struggling with withdrawal and NOT those that were successful in their taper (if they were successful, why would they post here in the first place?). So it's not an accurate picture of the amazingly diverse spectrum of withdrawal experiences. Everyone's journey in withdrawal is as unique as they are, and there is no reason to suspect yours will be as horrible as what you read on the 'net.

On a related note, I'd recommend not researching all kinds of supplements/vitamins/lab tests to "fix" whatever damage Paxil has done to you while you're withdrawing. It's a jungle out there, with a vertiginous amount of contradictory data and endless studies touting or decrying every supplement/vitamin/therapeutic modality under the sun to help bring your body back to normal. Everything from Testosterone replacement therapy to zinc supplements to creams, vitamins (not to mention all the different FORMS of vitamins), OTHER pharmaceuticals, lab tests for testosterone/vitamin/mineral levels (and of course there's little consensus on what levels are normal). And of course even if you pursued this stuff odds are each doctor will tell you something different about all these tests, meds and supplements.

Just forget it for now. For however long it takes you to taper off, you need to SIMPLIFY, SIMPLIFY. You don't need the extra stress of unriddling the highly complex world of lab values and further medication right now. It will take enough out of you just to taper. Another reason to hold off on all this stuff is the simple fact that your nervous system is very sensitive and exhausted in withdrawal and you may have adverse reactions to even lightweight supplements that normally wouldn't cause you trouble. This has happened to a fair amount of people on Paxilprogress (especially with antibiotics). Once you're done tapering and have given your body at least 6 months to heal on its own, THEN you can pursue this stuff. You'll know when you're ready.

4) Know your limits -- If, despite your best efforts at a gradual taper still bring you distress, it would be helpful to be easy on yourself and DO LESS in your life. That means not "toughing out" stuff you absolutely don't have to do, like certain family functions, hobbies, or even work. If you have to work and you feel awful, it might not hurt to tell your boss that you're having a lot of trouble and perhaps you could be reassigned to less stressful work for a little while. You don't need to say you're tapering off meds. You could make up a white lie and say you're really stressed over something and need a less stressful workload for a little while (even as little as a month or two).

Remember that withdrawal is EXTREMELY taxing on the body and mind. DO NOT underestimate this! This means you must unlearn some of the advice your parents gave you about toughing out stuff you don't want to do. You simply DO NOT HAVE IT IN YOU to tough out anything but the absolute essential things, and trying to tough out everything can make things much worse and you could pay for that expenditure of energy you don't have for weeks.

5) Family and social considerations -- I was having a conversation with a lawyer recently who was telling me about the collaborative justice model of law. She told me it was the equivalent of holistic/integrative medicine for law as it takes into account the incredibly complex impact of law in people's lives, and those of their families. For example, a collaborative justice lawyer handling a divorce case does not just view the case in a vacuum between husband and wife. ALL angles are considered: how the children will be affected by the divorce, and how the extended families of both families feel about the divorce and how it will impact everyone.

I bring this up because SSRI withdrawal is a similarly complex dynamic that affects whole families. You MUST show this post to your wife and make all these facts known to her. Alert her that you may not be yourself for a while and may not even show a lot of love or affection to her. Assure her this is NOT you -- it is the meds, and that many marriages have been strained by this but ultimately survive. And I'm pretty sure your marriage will be all the better for this experience when you're better.

If you have children, you may be alarmed that you are moody or short with them and may be harming them. You're not. It will pass. But if you're in a very rough patch your wife may need to take over some of the parenting duties you normally do because you SIMPLY CANNOT DO IT for the time being (remember what I said about knowing your limits?). If funds allow, consider getting a nanny to help ease the burden. Again, know your limits and remember that ultimately, daddy isn't going anywhere. He's just taking care of himself so that when this all blows over, he'll be an even better dad!

Despite all this advice, some people in your life may simply not be able to understand what you're going through. They may tell you to get back on the meds if you're feeling this bad. But again I bring up the street drug metaphor: if you're detoxing from heroin and are sick, would your friends say "For god's sake man, get back on the smack if you feel that bad!" OF COURSE NOT!

Understand that most people who haven't been through this situation simply cannot sympathize. Remember too this is still a somewhat "hidden" phenomenon and most everybody who hasn't been on these drugs simply wouldn't believe how powerful they are and how hard it is to get off them. Don't hold it against friends and family members who can't understand. Sometimes you may just have to ignore their "advice" and criticisms and just yes them for awhile as you continue on your path. YOU GOTTA DO WHAT YOU GOTTA DO.

6) Line up a good doctor and psychiatrist/psychologist NOW, not later -- This is critical. Find a good medical support team now, when you still have your strength, then when you are in crisis mode when you hit a bad patch in your taper. Believe me, you will thank me later for this! An example from my life will illuminate this point: My dad recently had double-hip replacement. The physical side of the operation went beautifully. In fact, he physically recovered faster than expected and was back to walking and driving very quickly.

But the psychological side was another story. As soon as he woke up he had the blackest depression he's ever known. It clobbered him. It was the first time I heard him cry. And he cried a LOT. I mean crying jags. And he was so vulnerable and emotional that he was coming to ME for advice, almost like a child to a parent. This scared me as I've always considered my dad the toughest guy I've known. But it also drove home to me the woeful failure of American medicine. NOBODY -- not my dad's primary care physician, not the surgeon, not ANY of the nurses, the anaesthesiologist, NOBODY -- told him he might be depressed after the surgery. This speaks volumes about our priorities in this country for healthcare: it's all about the plumbing and carpentry. Get the old hips out, put the new ones in, thanks to the miracle of science and technology. Well, this technology sure is a miracle, but it leaves out THE SOUL. Most medicine these days considers the body's role is just to hold the head up and nothing more. This couldn't be further from the truth. I'm certain the tremendous trauma and stress from my dad's surgery affected his mental state. This commonly happens with cardiac surgery patients, after all.

And again, nobody told him this because it simply doesn't occur to the average physician. They're too hung up on the high tech toys and carpentry. So my dad had to frantically and desperately chase down doctors and psychologists for help in the midst of all this. A nightmare, I can tell you. And a nightmare that could have been avoided if he was prepared.

YOU will be prepared. Don't end up like my dad.

The best advice concerning a physician would be to get a concierge physician if you can afford it. In a nutshell, the concierge model of medicine is a capitalist response to the failure of American health care. Basically, by paying a yearly membership fee (anywhere from $300 to $15,000 for the elitist clinics), you get a far more thorough annual physical than any insurance company would pay for. It includes a full battery of blood work tests, an EKG, and at least a one hour (mine was two hours!) initial consult with the physician. Often your results are transferred to a CDROM which allows you to easily bring any physician or specialist you visit up to speed with you unique health profile. Also, you often get 24/7 access to your doctor via their pager, cell phone, or home phone (!). Same-day appointments are also very common with concierge medicine. And of course you get unrushed doctor's visits where the doctor has the TIME to see you as a whole person with unique needs and concerns, not just another patient (of probably 30 a day) that they spend 7 minutes with and just throw pills at.

In my opinion, with complex health needs such as SSRI withdrawal and mental health, concierge medicine is the ONLY way to go. Keep in mind you still need to shop around for a good concierge doctor (the concierge model doesn't guarantee great doctors, after all) and most concierge doctors STILL don't know as much about SSRIs as we do, but I can tell you that having a great doctor who is always available to you is SOLID GOLD when you're in withdrawal. Think about it: when you are sicker and more panicked than you've ever been in your life, do you want to hassle with impersonal (and downright INHUMAN) answering services, *****y nurses and overworked doctors whom you can only see 2 weeks from now? OF COURSE NOT. And the average concierge doctor isn't expensive and they accept most types of insurance for routine medical stuff (office visits, blood work, etc). I only pay $150 a month for mine, and I'm in uber-expensive Boston.

Also, when you begin your taper, it may not hurt to have your doc write TWO prescriptions: one for your previous dosage strength, and one for your next dosage reduction strength. That way, if you find you've tapered too fast, you will immediately be able to reinstate to your previous dose without having to wait for your doctor to call in another prescription. Again, have a PLAN in case things get hairy.

7) Some basic advice on vitamins and supplements: Although I did state you should put off investigating various meds/supplements/vitamins/lab tests until after you're done tapering, there are a few vitamins and supplements that have proven useful for us here at Paxilprogress that are worth mentioning.

First is Fish oil. Know that you can't be too cheap with fish oils. Cheaper brands are inferior and are nowhere near as potent and effective as pricier brands. I recommend Nordic Naturals as I personally have used their Ultimate Omega brand for years now with no problems. You don't get fish burps and it is 70% pure omega 3s with little filler. I have heard that recent studies seem to point to EPA being the more important fatty acid in fish oil and no DHA, so it might be worth looking into a fish oil with a 4:1 EPA to DHA ratio or higher (some are as high as 7:1). Nordic Naturals offers such a product, called EPA XTRA, which has a 4:1 EPA/DHA ratio. I will be trying it soon and I'll report back.

I must mention that some people do have adverse reactions to fish oil. Sometimes it actually makes people MORE anxious or they may get a rash or feel itchy. I actually had an adverse reaction recently to a very concentrated EPA fish oil and had to stop it (it didn't make me anxious but it did make me itchy). For this reason I recommend starting at a low dose for about 6 weeks, such as the serving size recommendation for the Ultimate Omega product, which gives you 650 mg of EPA and 450 mg of DHA, for a total of about 1 g of Omegas. Some people take as many as 9 g a day, so 1g is a good conservative starting point.

Next is Vitamin C. I personally haven't felt a benefit from it, but many here swear by it. I believe 1 g is a good starting dose, but ask around for more info.

Another good one is Magnesium. It's important to use the right form of magnesium because if you get the wrong form you may not absorb it well and won't feel much benefit. I personally use the Natural Calm brand, which is powdered magnesium citrate. I take two rounded teaspoons and stir it in warm water. Although the effects are sporadic for me, it can often PROFOUNDLY calm my anxiety. And when I'm close to panic, it ALWAYS works to relieve my anxiety, often better than a benzo! The only real side effect of magnesium is if you take too much of it, it may give you a laxative effect. That's really it.

8 ) Accupuncture -- Another remedy that is worth exploring as it WORKS, although like any therapy mileage varies for everyone. I know that it helps relax me, although it doesn't work as dramatically for me as I'd hoped. But it does indeed work.

With acupuncture, it is imperative you shop around for a practitioner that fits you well. Thankfully, acupuncture is becoming more mainstream than ever which means you can find more English-speaking practitioners now. This is great as good communication between practitioner and patient is CRITICAL for good acupuncture. You simply MUST provide detailed feedback of what worked/didn't work with the treatment so the practitioner can pinpoint a treatment that works for you. A lot of trial and error is involved. Also look for a practitioner that has at least a decade of experience as practitioners learn by doing (again, there is a lot of trial and error). If you are wary of needles and pain, keep in mind the needles are very fine and don't penetrate very deeply. If it's still an issue for you, find a practitioner that uses Japanese needles as they are even finer than Chinese needles and are nearly painless.

One modality of acupuncture I found to be profoundly effective is ion cord therapy, which was developed by Japanese acupuncturists. Basically, the acupuncturist uses cords that are ionically charged (but are not electrified) and attaches them to points on your body to re-allign energy. It sounds new-agey, but the effects were profound to me: I always felt like I was lightly stoned after the treatment, and my anxiety was GONE. And the sense of calm lasted for days after the initial "high" wore off.

9) Meditation -- This is HUGE. I can honestly say that meditation has worked the best for me. And it's free! The only drawback being it takes discipline and a reliably quiet place (harder to find than you'd expect!). But it has made an amazing difference in my anxiety (when I force myself to do it lol). To start off, I'd recommend you sit up straight with your eyes closed and count your breaths up to 10 breaths for ten minutes. Just breathe normally and only concentrate on your breath. If any invasive thoughts flood in, don't force them out. Instead, just gently and gradually bring your concentration back to your breath.

10) Sleep -- Do yourself a favor and regulate your sleep cycle now before you taper. I recommend not staying up very late (not past midnight) and sleeping in no later than 10AM and not napping. A regular sleep cycle is key for your body during withdrawal. If you are getting bouts of insomnia during withdrawal, please try some magnesium before bed FIRST before taking a benzo or a sleep med like AMBIEN (which is -- surprise surprise -- addictive too!).

11) Get some perspective -- Realize you didn't do anything wrong by going on Paxil. You were just taking your doctor's advice. You -- and especially your doctor -- didn't know all the horrible consequences of this drug. We're victims of a problem bigger than any of us: the utter failure of a broken health care system. And we're not the only ones. Oh, no. You think we SSRI patients are the ONLY ones having trouble with prescription med withdrawal? NO WAY. Everything from beta blockers (meds for heartburn) to antipsychotics to blood pressure meds to triglyceride/cholesterol meds to hair-loss meds have all kinds of life-changing side effects and can be MURDER to taper off of. In fact, my acupuncturist had to have OPEN HEART SURGERY at age 30 because of the damage her tetracycline (prescribed for her acne as a teenager by her physician father!) did to her heart! We are all victims of the system, and the things you learn here will give you an edge on beating it and being all the healthier for it.

I highly recommend you read Andrew Weil's new book YOU CAN'T AFFORD TO GET SICK. You can pick it up readily at Barnes and Noble for $16. In it he chronicles the decline of American health care -- which used to be the best in the world 50 years ago -- but now is at a parity with SERBIA for health outcomes! He also has suggestions for how to fix it, and suggestions for us as health consumers. I like Weil because he is everything the average doctor isn't: Humane, philosophical and open-minded. It's a quick and accessible read.

One of my favorite whoppers in the book is the fact that before 1960, most Americans HAD NO INSURANCE. They paid for doctor visits and treatment out of pocket and that KEPT COSTS DOWN. Thanks to lobbying efforts by the insurance companies, now we need insurance to cover most medical costs. Unfortunately, insurance companies are not doing their job of keeping us healthy and are instead just lining the pockets of a few absurdly rich executives (who, I'm sure, can afford to get the best healthcare NOT in this country but in places like Europe or even India). If you think we have the best healthcare in the world because we pay the most for it, you are DEAD WRONG. And I used to believe that!

I've also heard only good things about Robert Whitaker's ANATOMY OF AN EPIDEMIC, which describes how we got into this mess of over-prescribing for common psychiatric conditions like anxiety/depression.

All of that to say this: It's not your fault. It's not your fault you don't have a lot of motivation to do things most people can do easily. I particularly have to keep reminding myself of this as my motivation is at a very low ebb thanks to this crap, and I'm at the age (27) where I really SHOULD be motivated to start a career. It's just very alienating to feel so blah and flat while everyone else is so amped about their work. But I don't blame myself as I know this isn't the REAL me, and I look forward to being off this garbage next year.

12) Success stories -- Simply one of the most important components of recovery here at Paxilprogress, and strangely one of the more overlooked. NOTHING will lift your spirits faster when you're in withdrawal than a good success story. Even better is reading a whole cluster of them at once to get it through your skull that MANY people recover EVERY DAY, even those who cold turkey! There is a thread dedicated to finding success stories on the site, but personally I really think we need to open a separate forum just for success stories, like benzobuddies. For now, you can PM me for a nearly 20 page word document of success stories I have collected from Paxilprogress and other forums. You may very well need to refer to these stories in your darkest hour.

13) Keeping a diary -- This can be very effective for many people. It helps them chart their progress and allows them to remind themselves it's not all bad when they are feeling their lowest. It also helps them keep track of what triggers their depression/anxiety.

Finally, a few general points to keep in mind:

1) Doctors aren't necessarily that smart. There, I said it. I was in an accelerated second-bachelor's nursing program and I was astonished to learn how ignorant a lot of nurses and doctors were (no offense Scotty lol). I soon realized that to become a doctor you really just need ambition and perseverance so you can survive med school. What is really needed to be an extraordinary MD is courage, varied life experiences that have challenged one's beliefs, nuanced thinking, and a humble knowledge of one's limitations. And I also believe doctors would be so much more effective if they had a strong philosophical/historical background. Even if they just knew about the basic concepts of metaphysics and perception bias they would be MUCH better able to diagnose and see through a lot of biased studies and realize that technology and prescription meds are not always the answer (in fact, they seldom are for many common health problems). They'd have the historical perspective to realize there is always a honeymoon period for the new med on the block and that in time this so-called miracle drug's ugly side-effects surface and things aren't so rosy.

And a lot of doctors think like 8 year-olds. This is especially true with psychiatrists. I think this explains the growing trend of medicating children at earlier and earlier ages for depression. I recently read an article about childhood depression where the fretful parents of a grade-schooler were dismayed to realize almost nothing made their son excited and happy. Even trips to the museum didn't do it! MY GOD! NOT EVEN A MUSEUM MADE THE KID HAPPY? THIS MUST BE A PROBLEM! And yet, aren't kids these days hammered with the platitude "everyone's special"? If that's true, then how can you expect every kid to have the same attitude and be happy at the same things! Hell, when I was a kid hardly anything made me happy except video games and music. My personality continues to be that way, as 95% of things in life don't interest me, but the 5% that do I am fanatically interested in (like film). My dad's the same way. THANK GOD some hot-shot child psychologist didn't get to me and pump me full of meds then. If anything would prevent me from being happy about anything, it would be antidepressants!

But the average psychologist these days buys into this whole "sanctity of childhood" BS which believes that childhood should be a time of utter joy and fun, where the only worry a child should have is grass stains on their knees and cupcake breath. Puh-leeze. If these psychologists had any historical sense they'd realize that this idea is relatively new and is an EXTREME and out-of-proportion reaction to how children were treated only 100 years ago, like with child labor and a "the child is seen, not heard" attitude where children were viewed as little adults without special developmental needs. Even the terms "teenager" and "young adult" are quite new.

I'm not saying a change in viewpoint wasn't due, but like always we've distorted the nuances of this issue and have gone WAAAY too much in the opposite direction and now think a kid should be happy all the time at all costs, even if it means medicating them with hard-core drugs. Yikes.

This of course carries over to adult depression too. I honestly believe depression can be a useful thing: it signals to us there is something wrong in our lives and we need to take a hard look at ourselves (which is getting harder and harder to do in this fast-paced society). But to the psychologist, depression is an evil, useless emotion that must be neutralized with hardcore drugs. This is a tremendous misunderstanding of the body and if you realize this sick dynamic, you will be better off, I assure you.

2) We are rapidly switching from the body to the mind in our culture and in our health care -- What I mean is this: at least in America, we -- by and large (with some key exceptions) -- have solved the food and shelter issue. Homelessness and death from starvation just aren't as epidemic here as they are in developing countries like India, China, or African nations. Now that our basic bodily requirements are filled, we are looking to fulfill the other big requirement: our mental needs. Witness the explosion of entertainment options at our disposal: 100s of specialized cable TV channels, DVD/Blu-ray, streaming video, the internet, video games, smart phones, etc all vying for our attention and promising us immersive experiences to take us away from our dull gray lives. And I truly believe antidepressants, for this reason, could not have come from another era or country (that is, America circa 1990). The epidemic isn't cholera or polio anymore, but boredom and depression. It isn't enough anymore to be well-fed and sheltered. We need to be happy all the time and have pleasure on demand. BUT IT JUST DOESN'T WORK THAT WAY. The human heart is a dark forest and the mind is far more complex than we'll ever know. Throwing science and technology at it just ain't gonna cut it. Need evidence of science/tech's failure? Look no further than Paxil Progress. The time is now to be courageously humble and realize SCIENCE IS NO LONGER ENOUGH.

Please keep this dynamic in mind whenever a new psych med comes out. I guarantee you it's not "new and improved" as the mind is far more complex than we know and it is UP TO ALL OF US to take our happiness into our own hands by doing the hard but time-honored thing: living adventurous (and sometimes painful) lives surrounded by good people.

*And if you think all of what I'm saying is nonsense, to that I say it is most certainly NOT as I have lived this advice my whole life. I have gained all of the knowledge about the medical industry and meds in this post myself through years of trial-and-error and suffering, and this knowledge WORKS because I've lived it. No philosophy is worth developing if it can't be tested by living it.

[jucafelix]

Anxiousmutt, very inspiring your story.
And cinephile thanks for all the info

[cinephile]

Hey no problem jucafelix. Just trying to help.

*I should also take this opportunity to add a few more things:

-We must be nuanced in our thinking and realize that natural therapies are NOT ALWAYS SAFE. Just because they are natural doesn't mean they are safe all the time. Some are quite profound in their effect and the FDA does not regulate any vitamins or supplements. It's mighty tempting to deify natural remedies in light of big pharma's blunders, but to do so would be tragic and no real gain for us. It all comes down to using the right tool for the job.
-From now on, I think everyone -- not just anxiousmutt -- should quiz their doctors whenever they prescribe them something. Ask pointed questions about the med, such as below:

1) How long has the med been on the market?
2) What side-effects have been reported?
3) Have any long-term (more than a year) trials been done?
4) If there have been long-term trials, have any withdrawal symptoms been reported?
5) Do you know of any less intense therapies or supplements to try FIRST before I take this med?
6) Are you prescribing me this med as it was intended by the manufacturer, or is this an off-label use? *This one is especially important. You simply WOULD NOT BELIEVE how many people are walking around taking meds for reasons the med was not originally intended for! My dad was actually prescribed Remeron because he had no appetite due to his depression after his surgery! It wasn't until after he came home and actually READ the drug pamphlet (you know, that folded-sixteen-times tiny sheet with all the fine print) that he realized it was an antidepressant! Turns out one of Remeron's side effects was weight gain due to increased appetite, and doctors are now prescribing it for lost appetite! Once he realized that he threw the med away.

*If the doctor gets snippy when you ask these questions, fire him and find another doctor. These questions are simply too important to be brushed off.

[AnxiousMutt]

Cinephile…thank you for your detailed reply. Very informative. Very appreciated.

There were a couple of things you said that hit home. Well, more than a couple, but I'll highlight just a few.

1) Your advice on not concerning oneself about going against a doctor’s wishes was certainly one. When I was originally put on Paxil I was very naïve about the whole medical world, trusting doctors implicitly. Surely they knew what was best for me, right? It wasn’t until my wife battled through cancer (she’s cancer free now!!) that I, we, experienced how inept, and capable, some doctors can be. It is also the reason I resisted my doctor’s advice on taking Klonopin for my restless legs at night (I had a sleep study done and it was determined I have sleep apnea and restless leg syndrome). I thank god I didn’t buy into the spiel. Sure it sucks sometimes, but it sure beats the alternative.

2) The tip on not going crazy with research hit home too. Of course I’ve been all over the net trying to dig ‘stuff’ up on the best way to wean off of Paxil. I’m only human, after all. I’m drawn to the stories of recovery, and quite honestly a bit apprehensive after reading some people’s horror stories. Your point about the natural skew of most stories towards the difficult variety is important to keep in mind.

I have to admit I laughed when I read your caution about researching vitamin supplements. I had just come from a site doing exactly that. I like the idea of simplifying this as much as possible.

3) Building a foundation for the long term. Ever since I started using the crutch called Paxil, I’ve not delved into the area of self-help much. I can now see where I’ll need to go back and start probing into the real me again and have a toolkit handy to deal with what I wasn’t willing to do before.

4) Regarding creating a team - I guess the fact I’m still waiting to hear back from my doctor regarding the switch to liquid Paxil should tell me that I may need a better ‘partner’ in this journey. I’m going to start looking into the ‘concierge’ doctor model and see what’s available locally.

Certainly these weren’t the only things I took away, and I’m sure as I reread your post again and again there will be new nuggets of wisdom to come to the forefront, but these made me sit up and take notice.

Once again, thanks for your reply and support!

[Ezin]

I had a sleep study done and it was determined I have sleep apnea and restless leg syndrome

A quick note - if this happened after taking Paxil, please be aware that these are possible side effects of the drug. It doesn't mean that they are, but that they could be.

Twitching legs are often mentioned as occurring whilst on drug. Have you noticed any other 'movement' issues e.g. eye tics, gait/walking changes, sore neck/jaws, teeth grinding, hand tremors...?

[Pat Shields]

Originally Posted by AnxiousMutt

It all came to a head at a regional team meeting when I was randomly selected to do some role playing on the spot.

Years before Paxil, but when I started going to the mental health clinic because of nightmares that were making me afraid to sleep, the therapist one day suggested a role-playing exercise and was moving into it even as he suggested it. I just looked at him and said, "No." Which would have been worse, standing up for yourself and saying, "No," or the panic attack you went through? You said, "I felt like the biggest fool in the world. . . ." The only thing you were foolish about was not standing up for yourself. I hope that you have figured out by now that your greatest and best protector will be yourself.

Originally Posted by AgitatedDoggie

That price to me is the ever present feeling of not caring about anything. It’s like I care but I really don’t care, if that makes any sense.

For me, that was the saving grace of Paxil! The disinvolvement, the not caring, the ability to detach and stay detached. It's what saved me. But I started packing on the pounds with the first dose, and that's what eventually led me to stop taking it. Now, being able to look back on the whole episode, I can see how bad taking it really was. But while you're in it, it can be a "can't see the forest for the trees" situation. Thank goodness you are becoming aware of the downside. Possibly you are entering what we call "poop-out" and haven't realized it yet, or it hasn't affected you strongly enough yet?

Welcome, and as with any other compendium of instruction and anecdotes toward which you lean for instruction, take what you need and leave the rest. There is help and support here, and we look forward to your participation.

[cinephile]

Glad to help, Anxiousmutt. One by one, we WILL get the word out there how horribly broken this health care system is in this country. As you start tapering and start to follow my advice and hopefully get a concierge doctor, you simply will not BELIEVE how dysfunctional this system is. Or maybe you already know, considering the experience you had with your wife's cancer.

Sad thing is young people, who are precisely the ones who usually protest corruption and broken systems, are actually the worst ones equipped to protest health care's failures because when you're young you really don't need health care and thus don't realize how woefully inept it is. For the most part, one's health is excellent and taken for granted when young. If you go to the doctor at all when you're young, it's for routine stuff like antibiotics, a broken leg, or vaccinations. Doctors can mostly handle this stuff well, even under current terrible conditions. It's not until you hit your forties and a lifetime of poor diet, unnecessary meds and a sedentary lifestyle catch up with you do you then get sick and realize modern US health care can't help you that well. And by then you're too old and sick to even think about protesting lol. You just want to get better at all costs.

I wasn't surprised to hear you had a struggle in your life (your wife's cancer). I have a sixth sense now for people that have true character, character that is forged through struggle, uncertainty, questioning of one's beliefs, and ultimate triumph. I could honestly hear your strength of character in your level-headed and down-to-earth post.

Where exactly are you located? You're in the South, right? Thankfully you could get a real bargain with concierge doctors. When my dad finally hooked up with a good concierge doctor, he only paid an annual fee of $350! He's in Fort Worth, so it's amazingly cheap and this doctor is great. Below is a link to a search engine for concierge doctors nationwide. A cursory search for Kentucky, Georgia, Tennessee, and Alabama has yielded at least one doctor for each state. You can of course also google "concierge physician" and see what comes up. I've also included a link to an article written by Stephen Knope, who is the biggest proponent of concierge medicine. It's a great way to get up to speed on just what is wrong with primary care in this country.

Remember: Taper slow (10% reductions using the spreadsheet), be sensible with supplements, don't go nuts researching, have a backup plan if things get hairy (they may very well not), and try to keep going with your life and just let the taper run silently in the background.

Concierge search: http://www.conciergemedicinemd.com/k...&Submit=Search

Article: http://www.vantageclinicalsolutions....-steven-knope/

[Junior]

Mods - Cinephile's first post in this thread is so informative and comprehensive, I'm wondering if it could be made a sticky? In its own thread? It's great reading for people who have just found this site.

[Songbird]

I think Cinephile should write a book!

Ezin's comment about the sleep apnea and restless legs was interesting. I think these can be drug related. Serotonin is involved in keeping the throat open so that we can breathe during sleep. Some people (myself included) have had problems in w/d with the throat closing during sleep.

[AnxiousMutt]

Originally Posted by Ezin

Twitching legs are often mentioned as occurring whilst on drug. Have you noticed any other 'movement' issues e.g. eye tics, gait/walking changes, sore neck/jaws, teeth grinding, hand tremors...?

Hi Ezin...I haven’t had any of the other symptoms you mention. It would be great if my restless legs were a byproduct of Paxil. My wife would be happy about it, but I think she’d miss sleeping on the bouncy bounce we also call our bed

[AnxiousMutt]

Originally Posted by Pat Shields

The only thing you were foolish about was not standing up for yourself.

Hello Pat…you hit the nail on the head. I’ve always had an issue with standing up for myself, always finding it easier to avoid conflict and just going along with things. Frankly, at the time of this incident, it never occurred to me that I had the power to say no. Interesting, very interesting the point you make.

Originally Posted by Pat Shields

For me, that was the saving grace of Paxil! The disinvolvement, the not caring, the ability to detach and stay detached.

I have to agree that this was great too. In fact it was what I was seeking, for certain situations. But now that's its become the norm in all facets of my life, I realize it's not worth the price of admission.

I figure this is life where I get one shot, so why not enjoy the ride (yes with the downsides) to its fullest.

No doubt, this is written by someone who's still on the drug, so note to future self...remember this feeling.

[AnxiousMutt]

Cinephile,

After reading up on the whole concierge physician model, it makes so much sense. When my wife went through her ordeal, it became apparent fairly quickly that I was the only advocate she had as we stumbled through the healthcare maze. This was especially true after her surgery, and during her stay in the hospital. In reality though, was I the best advocate to have considering I didn't really know what should and shouldn't have been done for her? I know my main focus was just to make sure she was as comfortable as could be and got 'service' when she needed it. Having someone knowledgeable, who knew her history, would have been a godsend.

The good news is I'm in Atlanta and see a few concierge practitioners in the area.

Thanks again for the help.

Oh, and I have to agree with jucaflex, junior and songbird that your response to me should be a sticky. Just great info.

[cinephile]

Thanks everyone for the compliments about my post! Yes, I agree it should be a sticky as I think it can bring newbies up to speed quickly. Part of the problem with forums is information is scattered all over the place. The information may be very good, but when you're scared or, even worse, in the grips of cold turkey withdrawal, the last thing you want is to have to sift through 100s of posts to piece together a plan. I wanted my post to be one-stop shopping for novices that they could print out and start using right away.

If it is made a sticky, I'd like a mod to merge the first long post with my shorter addendum post about how we must be cautious with natural remedies and the questions to ask doctors about prescriptions. I couldn't add that to the original post as I could no longer edit my original post for some reason.

Anxiousmutt: Glad you're looking into the concierge model. At first glance it may seem elitist to many Americans (myself and my dad included) but when you realize how affordable it can be when you shop around, it makes a lot of sense. If health care doesn't begin to improve, I definitely see the concierge model becoming more and more mainstream as Americans become more and more outraged with the quality of their "care." And again I must stress how you should shop around, even with concierge model doctors. Many of them allow you a free initial consultation where you can see if they are a good fit for you. Use this meeting to ask the tough questions:

-What do you think of modern American health care?
-Would you prescribe a pharmaceutical FIRST or LAST, before first trying more natural remedies?
-What is your opinion on alternative therapies like acupuncture, meditation, or herbal supplements?
-How much do you know about antidepressant withdrawal? How fast do you suggest your patients taper? Are you aware of the long-term side-effects?
-Would you be open to reading literature I bring you about antidepressant withdrawal? EVEN if it's from the internet?
-What made you get into concierge care? Were you, too, fed up with mainstream health care?

I tell you to ask these questions and any others you can come up with because you should be WOWED by your doctor and their staff. Their office should be quiet and unhurried. They should be pleasant and eager to help. And your doctor should be upbeat, attentive, open-minded, and interested in YOU as an INDIVIDUAL, not one patient out of 30 he'll see today. You also shouldn't be waiting more than 15-20 minutes for your appointment.

Here's how it is in my concierge office. I walk in, the receptionist greets me BY NAME, I hang up my coat in the closet, say hello to the nurse (who also knows me by name) and I grab a seat. The office is quiet and pleasant. There aren't dozens of sick people clogging the office and nurses/doctors running around like crazy because each doctor in the practice only sees about 7 patients a day, versus 30 or more at a traditional practice. I'm then seen ON TIME EVERY TIME for my appointment and I can spend over an hour with my doctor. He's genuinely concerned about me and remembers what we spoke about on our last visit, and is eager to hear about my progress or setbacks. If he can't offer an explanation or answer for my questions, he is quick to recommend specialists that he personally knows that may help me. After the visit I go to an adjacent room where I schedule my next appointment (again, no wait to see the scheduler).

If you think this is elitist, think again: this is largely how physicians treated their patients 60 years ago, before the insurance industry got their hooks in all of us and drove the quality of care way down and it all became about absurd profit for a few insurance industry CEOs. You're simply paying a modest fee to turn back the clock to an era in this country where doctors truly did what they were supposed to do: help people get better. In my opinion, you don't have to drive the best car, watch the best quality TV, or eat the finest meals, but you DO need the best health care you can afford because when you have your health, you have everything.

And yet consider this: The first concierge practice I visited was a big disappointment. They were late with my appointment and the office was very stressed and busy, AND it was littered with pharmaceutical swag (the usual stuff: pens, tissue boxes, signage, etc). NOT a good first impression. When I did see the doctor she was as burned out and flat in her affect as any non-concierge doctor. She honestly didn't seem at all concerned about me and gave me monosyllabic responses. I was out of there FAST. I'm glad I didn't settle for her, as the very next physician I auditioned was a thousand times better and I've been seeing him since.

You must always remember that in medicine, just like in life, there are no guarantees. Don't be blindly "brand loyal" to concierge practice and assume just because it's concierge it's by default great care. It isn't. You need a great concierge DOCTOR, not just practice.

And, of course, one more sobering reminder: Even if you hook up with a great concierge doctor and practice, that doctor is more than likely still going to be limited in their knowledge to mainstream Western medicine. They most likely will not know much (or anything) about nutrition therapy, meditation, acupuncture, massage therapy, hypnosis, or various psychotherapy modalities like Cognitive Behavioral Therapy. They simply aren't trained that way (I really hope training of future doctors changes too). BUT, if your doctor is truly great, he will be open-minded and will accept your pursuits of alternative medicine and will want to hear how you are coming along with it because he truly wants you to get better any way possible, and wants to keep your success with alternative therapies in mind so he can recommend those therapies to his other patients.

[medsrnot4me]

Hi Cinephile,

Thanks for all of the great information/suggestions! I was curious about your personal experience with your concierge doctor when it comes to anti-depressant withdrawal? Do you find s/he receptive to what you are going through or went through (I am not sure where you are at in terms of tapering or if you are off meds)?

Michele

[medsrnot4me]

oops - sorry....I see from your sig. that you are tapering.

[cinephile]

Good question meds! Actually, my concierge doctor is 100% supportive of my tapering schedule. He didn't even question it and agreed slow was the way to go. I should also mention I instructed him to check my prolactin levels when my blood was drawn. He was puzzled at first and wanted to know why. I told him that I learned on boards such as this that SSRI use can reduce dopamine levels and thus raise prolactin levels, causing a drop in libido. He listened carefully and agreed it was good reasoning, and he intimated that he didn't know that about SSRIs. He promptly ordered the test (prolactin was normal, for what it's worth).

I should also mention I love his transparency and his admittance of not knowing everything. He admitted back in the 90s when SSRIs were just coming out that he cold turkeyed people all the time off their SSRIs because he simply didn't know better. Nobody did. And he said most patients seemed fine! Just something to keep in mind so we can keep perspective. Not everyone has horrific withdrawal experiences and some even cold turkey fine. Not, of course, that I am in any way recommending cold turkeying.

He also admitted he WILL NOT prescribe any psych meds as he doesn't know enough about them. He says he leaves that to the psychiatrists. I LOVE that he is humble and doesn't have a god complex like so many MDs. He even admitted he hit the wall in med school and realized "Man, my classmates are getting all A's and sometimes I'm struggling for C's! I'm probably not smart enough to be a neurosurgeon or a director of a major hospital, but I'm still going to pass my boards and be the best doctor I can be."

I don't know about you, but I think it is an ASSET for a doctor to keep his ego in check and know his limitations. It's at least refreshing, and that's why I included all this information for everyone on this board who are (rightfully) disgusted with arrogant MDs who don't trust us. Believe me, there are some good doctors out there, but you have to LOOK.

[medsrnot4me]

I am so glad you have found such a supportive, down-to-earth doctor, Cinephile. Thank you for sharing your experience. it is good to know there are doctors like this out there!