Absolutely get a second, and maybe a third opinion.
Is the current doctor you’re talking about a medical doctor or a psychiatrists? Seems like you need to see a medical doctor.
He’s a psychiatrist, but they are considered medical doctors, correct? If I go to a primary care doc, they’re just going to refer me to a psychiatrist.
During my first visit with him a couple of months ago, he referred me to a neurologist, who I am going to see in three weeks. I know the drill. He’ll give me the routine test (yay, let’s test my tandem gait down the hallway, in my stocking feet, for the whole world to see!). He’ll write a brief report noting “soft signs” and a recommendation for an MRI. I know this because I went to a neurologist last year. And another one two years before that. Both wrote similar reports and recommended that I get MRIs. Nothing showed up in both instances. Both times I concluded I must be making a mountain out of a molehill. But then the symptoms would make me seek help again. When will I ever learn?:smack:
But this particular shrink thinks I could have PANDAS (strep bacteria-induced OCD, found mostly in kids), because my strep titer came out to be slightly higher than average when I got a blood test. But I did my research (hey, I’m not a scientist for nuttin’). My strep titer is well within one standard deviation of the norm, and furthermore the progression of my symptoms does not follow the typical course of PANDAS. I don’t want to say the guy doesn’t have a clue, but if he’s expecting to find little bacteria munching on my basal ganglion in the MRI scan, he’s gonna be wasting the tax-payers dime big-time.
In my case, it was trained into me by my parents, very *very *uptight people when it comes to dealing with stress or conflict. Just to give you an idea: My parents were married for 14 years and divorced due to infidelity and had exactly one fight in all that time (Not just “one in front of their kid”, but one, total. And that one I caused because I lied to Mom about Dad’s activities. That’ll give ya some baggage, it will.) They’re very much “stuff those negative feelings down so deep you don’t feel them anymore” kinds of folks. My dad’s the only person I know who is not schizophrenic yet mental health professionals describe as having a flat affect. Seriously, he’d make a killing a poker if he wanted to. It actually made it very hard for me to recognize “flat affect” during my Psych rotation - the patients with “flat affect” just reminded me of my dad.
Anyhow, my dissociation was learned, and the anxiety disorder triggered it, but it wasn’t from trauma.
Speaking of disassociation, it sounds like he is completely disassociated from compassion and empathy. With a mouth like his, he should watch that he doesn’t a trigger pyschotic episode from a sicker patient.
I wouldn’t necessarily worry about getting a second opinion until after you see how this new drug works. But definitely tell your therapist about how his insensitivity and dismissal of your feelings makes you feel.
I should say, this was intended to make you feel better, not belittle your symptoms. If your symptoms are negatively affecting your life, definitely keep on working on figuring out what is going on. I just wanted to give you another perspective, that not everything that isn’t strictly “normal” is pathological. 
Almost all psychiatrists in the U.S are MDs. The exception are those that are DOs, but they all have medical degrees which is required to prescribe the class of drugs that they do.
A bit of my story:
I first became unwell with psychotic symptoms in 1995 - over the next 15 years I was diagnosed with PTSD, various personality disorders and severe depression. Eventually I was diagnosed as bi-polar and put on appropriate medication (3 years ago). My life has significantly improved since then (I have a job, am studying and am preparing my life to fit in some foster kids). When my doctor found out that I fell over a lot (4 times a day sometimes) and had a look at may gait I was sent to a neurologist who checked me out for anything pathological (nothing going on) and then sent me to** physio**. My gait improved and my balance improved. I still fall over more than most people but I’m a lot better.
As for racing and intrusive thoughts the only drug that has ever helped was lithium - CBT had has more effect on those symptom than anything else but it has taken a long time (I have been doing some form of CBT since 2001).
So knowing what I know now if I were in your position (which at present I am not but there are some similarities to me in the past) I would probably try the medication (even if they have yucky side effects and realising they can take up to 2 months to start working, and sometimes the side effects get better after a while and sometimes they don’t) There are a lot of meds out there and everyone reacts differentlt to the so don’t worry too much about being ob the medication merry go round (hey it took them 15 years to put me on lithium). Try an get some professional CBT and practice some DIY CBT everyday (get a workbook, write a journal and try to analyse your feelings and motives, join www.moodgym.com.au or www.ecouch.com.au) Try finding some sort of support group (irl or online - with people who have similar issues) it is (for me at least) good to be able to bitch about my illness with people who really know what it is like.
Anyway YMMV and feel free to pick through my blah blah blah for anything you wish to take or leave.
On a last note to let you know where I am at with my illness - I don’t look at it as the most horrible and disastrous life destroying thing that ever happened to me (trust me I used to and my life revolved around it). I would not be who I am now without it, It has increased my compassion for those wo are down and out, i no longer take everything at face value and I realise I am not the centre of the universe. Perhaps the fact that I have gone through some horrible experiences can help me help others to avoide similar things or just help them to deal when they do anyway. If i can help in any tiny way then the period of my life when i was in hell was not a 100% negative experience (even though it felt like it at the time) I have chosen to believe this
OK carry on folks.
I know exactly how you feel, monstro! 
I strongly advise against getting a second opinion, because, as you’ve already figured out, it won’t do any good. You’ve had–what?–four different opinions so far? Which resulted in an equal number of diagnoses? I don’t see how one more will help. And as you also no doubt know, the big problem with psychiatry is that there are no objectively correct diagnoses. There are lots of descriptions of different sets of problems, and it’s like a parlor game trying to decide which list describes you the best.
When I lived in Washington, DC, I used to rent a car and drive to Philadelphia once a week, because someone told me that the best psychiatrist he knew of was there. I’m not convinced he was all that great, and I imagine I felt much the same way you do. I wanted him to be right, because he felt like my last, best hope, but I was extremely skeptical. He diagnosed me with Bipolar II disorder, which no one I saw before or since has agreed with. In the end, moving to Colorado (by hitchhiking across the country!) did more to help my mood than anything else I’ve ever done.
The worst part for me, besides the futility of trying getting a decent diagnosis, is the utter impossibility of evaluating my treatment. My depression (or whatever the hell it is, some doctors have even suggested it’s more personality-related than axis-I) comes and goes dramatically and unpredictably. When it comes, we (I and whichever mental health care provider I end up with at the time) decide that whatever I was doing prior to the episode wasn’t working, so we try a bunch of new medications and therapies until I start to feel better, at which point we decide that whatever I was doing when I got better must be what works for me now, and I keep taking it for weeks or months or years until it happens again.
When I was seeing the doctor in Philly, he prescribed lithium. I’d never taken a mood stabilizer before. The effect was dramatic. Within a day or two of starting it, my mood went from close to the blackest it has ever been to perfectly normal. My mother (a medical doctor, herself) was as astounded as I was. I had never responded to a medication like that before. I kept telling myself it almost had to be some sort of a placebo effect, that there was no way that it could have effected me so quickly and completely, but the placebo effect seemed even more unbelievable. Until a week or two later, when I saw the shrink again, and he mentioned that the effect I reported happened much more quickly than was actually possible with lithium, that the drug took time to build up in the system. And sure enough, over the next month or so, my depression returned, and after a few more months, the doc took me off the lithium (at my request, I think, but I don’t remember.)
Obviously, I don’t really know if the move to Colorado did any good either, although the result was just as dramatic and sudden and has lasted for almost five years now. I’m still taking the antidepressant I was on when it happened, too, because–well, I really don’t know why I got better, but I don’t want to make any big changes that might make me worse again. In any event, you aren’t likely to see any major papers on moving across the country as a treatment for depression.
Even for things like medications, you can make judgments at the population level, that, say, 80% of people who doctors labelled with diagnosis X got better in six months compared to 30% of patients taking a placebo, but there is absolutely no way to know if I got better when I was taking it because of the medication or not. Even when I don’t get better, who’s to say the drug didn’t stop me from getting worse, or that when I had a suicidal episode after taking an antidepressant for two years that I wouldn’t have had three other episodes in that time if I’d not been taking it. Or maybe I would have gone ten years if the medication hadn’t had an adverse effect. I have absolutely no way of knowing, and neither does anyone else.
madrabbitwoman and Alan, your posts have been very educational and comforting. I’m glad I’m not the only one who’s had their head shrunken a million times, with no discernable results.
I’m vacilating on what I should do about the Luvox. I guess I should stop reading so much, but I’ve been reading some pure horror stories from people who’ve been prescribed this drug. There are many good stories too, but it seems that these are from people with typical forms of OCD and depression. I have neither.
It’s almost like what I need to do, before doing anything else, is to jot down all the issues I’m having and weigh them against the potential problems adding yet another of drug to my life would bring. Like, Luvox is apparently very hard to ween off from. Do I really want to be on two highly addictive substances (clonazepam being the other)? I might have to wait months before I see any improvement, all the while dealing with insomnia, daytime drowsiness, exhaustion, weight gain, suicidal thoughts, and the ever-present constipation. Do I really want to be fixed that bad? Cement shoes don’t seem so bad when compared against all that!
I don’t think I want to risk disrupting the fragile stability I have now, just on the off chance that I will be able to walk better and not have swirly thoughts. But I’m not sure. At first I didn’t think I cared enough about this so much (which is why I was just going to pop the damn pills in my mouth like a good little girl), but now I’m wondering. If I don’t have OCD and there’s something else going on, the Luvox could actually harm me. And I’m already on two anti-depressants? Why do I need three?
I’m fortunate that I get along with my psychologist, but she defers to the shrink on these kinds of matters unless I’m getting suicidal. Plus, I can’t bear the thought of starting another drug and trying to cope with the side-effects (particularly the psychological ones) while she’s away on a 3-week vacation. I know that makes me sound like a big baby, but if one of the tires in my brain blow out while she’s away, I’d be left with Dr. Hotshot, who communicates to his patients through a secretary whenever they call for medical advice. That sounds unethical, right? She shouldn’t be privy to all my business. But that’s what I get for going to the Best Doctor In Town.
Alan, your mentioning of the placebo effect is making me wonder about the Anafranil I started taking about six or seven weeks ago. About three days into taking it, I thought it had cured me. I was so happy that I told anyone who would listen about its wonderous powers. My psychologist was so pleased for me that she called my shrink and left a gushing thank-you message on his voice mail on my behalf. But after about a two weeks, my symptoms started cropping back up. Now I still have most of the side-effects but none of the good. So now I’m wondering if my “healing” was purely psychological. Also, my problems fluctuate anyway, so it may have been that I started taking the Anafranil during a “good” period. And maybe my psychiatrist took the fleeting improvement as a indicative sign of OCD. Well, in that case, I guess I can’t blame him. I guess I’d think the same thing too.
It’s too much to think about for right now. I should just enjoy the coming of the new year and be grateful that my car passed annual inspection!
The doctor added another SRRI to the serotonin-affecting drugs you’re already taking? Not to scare you even more, but is he not aware of serotonin syndrome?
Your mentioning the placebo effect makes me think that CBT would be very good for you - it sounds like you’re doing a lot in your own head. The “cement shoes” feet can also be anxiety - there was a member of my anxiety support group who couldn’t walk when he was in the midst of an anxiety attack. It is also possible that all the drugs you are on are really flattening your emotions out. And, finally, in my opinion and experience, mindful meditation is the best thing for racing thoughts.
I don’t know what medical system you have, but in the US doctors do not get paid to listen to patients anymore. They get paid for seeing as many patients as possible and writing prescriptions. One thing I learned from spending two weeks at UCSF medical school (as a patient) is that listening to the patient is one of the most important things they teach doctors. A thorough history and listening is essential to making the correct diagnosis and instructing the patient and putting the patient at ease.
How long have you been on the Klonopin? It can cause or exasperate gait issues and tics if you are on too high a dose. The loss of motor control is similar to being drunk. And not feeling any anxiety is another symptom of having too much. Like pain and pain medications, the medicine should never make the anxiety go away completely–you need some to function.
And how long have you on the Anafranil? Actual results for OCD takes at least a couple months. From what I remember, you haven’t been on it that long, and it can take even longer to work.
I wouldn’t have a problem with an anxiety diagnosis if you weren’t already on two anti-anxiety drugs. Especially since Luvox works in the same way as Anafanil–by increasing serotonin levels. You’re already on a serotonergic drug, and the first hasn’t been given long enough to work.
And I’ve never heard of augmenting a tetracyclic with an SSRI. I’ve heard of doing it the other way around, but that’s with extremely low doses. You are definitely risking serotonin syndrome if you are being told to take both. While the stronger form of the syndrome can be brutal, even the weaker form requires going off all serotonergic drugs, and sudden withdrawal from the high levels can be brutal.
The more I know about the condition of psychiatric medicine, the more I am not impressed. We seem to act like we are much further along than we are. The point where we are right now is closer to the 19th century for other types of medicine. We barely have a working theory for how a lot of these pills work. We know what their immediate effects are, but have no clue why that causes symptom reduction. or what actual physio-chemical problem is being corrected. I mean, we’re still finding studies where drugs that were previously declared effective are having their effects questioned.
Heck, I can do what they do: you found that a sedating drug with an antihistamine action (Anafranil) helped you temporarily and are having racing thoughts. Well, Seroquel is often used for racing thoughts, and has one of the strongest antihistamine actions around. So, since we can’t do any tests, let’s try you on a low dose of that.
Obviously, I’m not a doctor. But that seems to be the way it works. Just keep trying and trying medication, based on whatever random thing you notice in the description, and see if it helps. And if it does, then use the drug to make the diagnosis.
That’s essentially it, BigT. My psychologist said that doctors do this all the time, and that while it sounds strange, it’s not that big of a deal. But I’m like, what?! How is not a big deal? It’s like throwing everything and the kitchen sink into a hole in the wall, and then pronouncing that the last thing you threw into it before it sealed shut can be used to trace the source of the problem. It’s a screw driver, so a busted screw must have been what caused the hole in the wall. Here’s your prescription for a screw driver.
NEXT PATIENT!
I started off with a low-dose of Anafranil…the lowest dose possible. That alone should have told the doc (and me as well) that miraculous recovery within a week of taking the medication should be viewed with skepticism. But it’s too late now. He’s convinced it’s OCD, so now I’m on the OCD drug review. Before it was the schizophrenia drug review (Geodon, Lexapro, Abilify, Saphris), with some poppers to deal with anhedonia and depressive symptoms (Wellbutrin). Let’s jigger with the dopamine levels for a while. That’s the ticket! Klonopin, I was told, was for the tics…which to be honest, were a lot worse before I started on it. I actually had forgotten about that. I forget how that class of drugs work, but it’s doing something. But I’ll probably have to be on it forever.
So now we’re jiggering with my serotinin. Tweaking a different area of my brain until it stops the swirly thoughts and the movements that Klonopin can’t seem to touch. And may be making worse, which I have considered. Catatonia is a side-effect of clonazepam. And whaddayaknow? My movement problems seem pretty damn close to catatonia! Is it wise for me to be taking a drug with side-effects that mimic the very problem I’m trying to fix? I don’t think it is. But if I should bring this question to my doctor, I will be dismissed with advice to go read up on something. Because no patients come to the doctor’s office already knowing some stuff, apparently.
Sorry for the rambling. I just don’t know what to do now. All I want to do is stay in bed and sleep, which is the opposite of what I usually do on sunny Saturday mornings. 
Happy New Year, ya’ll.
I agree with BigT - my experience with doctors and drugs left me with what I am fairly sure was a mild form of serotonin sickness (they added Effexor to the Wellbutrin I was already taking) - I have never felt as sick in my LIFE, and every time I went back to the doctors, all they did was tell me it takes a while for the side effects to calm down, and give me a prescription for more drugs (usually a tranquilizer). When they decided to give me another drug to combat the nausea and inability to eat that the first batch of drugs were causing, I decided the original anxiety which had prompted all this felt better than all the drugs, and with my doctor’s support, I withdrew from all the drugs. I’ve been drug-free for seven years now.
I am truly sympathetic to what you’re going through, monstro. The days when I was taking all kinds of drugs for anxiety were a very painful, confusing time in my life. The doctors were supposed to know what to do - why weren’t they actually helping me? Why was I getting better information from books and the internet?
Thanks so much for sharing your experience, Cat Whisperer. I did not know that it’s not good to add an SSRI to Wellbutrin, which I’m currently taking and appreciating. Yet another reason to hold the phone on Luvox.
I am seeing a therapist who specializes in CBT, which I haven’t really mentioned yet. She’s taught me relaxation techniques, and when I remember to use them, they can make things not so bad. It’s just remembering to use them that’s the problem! When the brain is full of whirly-gigs, all I can seem to do is moan and cower in pain. But I was just thinking…exercising really helps me keep the thoughts in check. I’m thinking (don’t laugh now) about getting a mini-trampoline, or actually two of them. One for the office and one for home. When the thoughts get bad, I can just jump until I shake them into “place.” I know that sounds crazy, but walking is effective in managing them this way. Why wouldn’t jumping?
Do you think you could go to a psychologist who specializes in testing? That was how I found out that I only had OCD, and not ADHD nor a PDD. Taking me off the ADHD medicine really, really helped. I may be a bit absent minded, but I’m a lot happier.
And you didn’t mention how long you’ve been on the Klonopin: while it’s anti-anxiety effects usually last for a pretty long time, (forever for some people) its other effects often diminish over time. Since you say you took it for the tics, the fact that they are coming back could mean that it is losing its effectiveness.
I’m surprised they didn’t start you on an SSRI first for you tics. Those are much safer, even if they take longer to work. Tics and OCD are very closely related: some people think the compulsions in OCD are just tics in a different part of the brain.
Oh, and Klonopin is a benzodiazepine, and works on the, well, benzodiazepine receptors, which are part of the GABA[sub]A[sub] receptors. Those are the ones that work as neural inhibitors, which work not only to stop seizures, but also to stop anxiety and relax muscles. In fact, it should help with racing thoughts.
If it works, it works. People use any number of visualizations to get unruly brains under better control - I know a lot of people use a visualization of a “STOP” sign when they start going down the garden path of obsessive/racing thoughts. As I mentioned before, mindful meditation really worked for me - I just focus on my breathing instead of the never-ending narration in my head.
I’ve been on it since around May 2009. So almost a year and a half? At 3 mgs. I don’t know if that’s a real high dose, but it seems that way to me.
I don’t know either, to be honest. It seems like from jump-street I was started on the atypical anti-psychotics. I was prescribed Lexapro, however, but it–along with Geodon–made me an insomniac, suicidal, uber-depressed zombie. So that’s another reason why I don’t want to take Luvox. I’ve read that if one SSRI does a number on you, chances are another one is just going to do a repeat performance. I cussed out an old lady while I was Lexapro (or maybe it was Geodon…that whole period of my life was weird). I don’t want to do that again.
The doctor told me to take Luvox in the morning. I would take it with 1 mg of clonazepam. Don’t know if this is good for my particular system or not. From what I’ve gathered, many people take it at night and then can’t fall asleep. They then spend the next day drooling at their desk, half asleep–which seems very familiar to my experience with the Anafranil! But you cannot take caffeine with it. So maybe a morning dose is better? I don’t know.
I wonder why it’s not. The Abilify didn’t touch the thoughts either and it was actually somewhat effective with my movement issues (but I had to stop because I was developing TD, ironically). Out of all my symptoms, the racing thoughts are the most recent development–having begun about two years ago. And really, they are the thing I wish to be gone the most. I hate the cement shoes, don’t get me wrong. But there’s no pain associated with it, just awkwardness and unwanted pity from on-lookers. However, the thoughts HURT. It’s like they exert a physical pressure, and I can feel them pushing up against my eyeballs or something. Fortunately the pain only happens every once in a while, though the thoughts are always in the back of my mind. Swirling around like confetti in the wind.
I was put on Intuniv about a month and a half ago. It’s an ADHD drug. But I’ve never had attention issues. Akathesia, yes. But Intuniv didn’t do anything for that. It just made me almost pee on myself a lot. Which is funny because Anafranil does the complete opposite.
I think it’s clear I have a basal ganglion disorder. Maybe I’ve got a little of mania-like agitation and racing thoughts going on, with the kind of tourettism and parkinsonism you’d expect to find with abnormal fluctuation of dopamine activity. Maybe my serotonin needs some tweaking, but I haven’t see any clear evidence that it does. I do know that whenever we fool with the dopamine knob, things change. If they could reformulate Abilify so that it didn’t make my lips have a life of their own (and it would be great if it also did not turn my stools into bricks), then maybe I could go up in dosage and actually see improvements in my thoughts as well as my movements. But I was stuck at a low dose because of the TD. It did just enough to quell some of my tics, but that was about all I could expect at the dosage I could tolerate.
Maybe I need to talk to the doctor about going back on Abilify. (Shut up, you with the face. I know we’ve had this conversation before.)
I guess May 2009 would be more than a year and a half.
The drugs. They make monstro do bad math.