ocd for u and me

Saw a doc today.
out of the university - will be part of a study program.
psychiatrists in training.

Doctor: "I run a tight ship. Everybody goes through rigorous training, and all meetings are reviewed with the supervisors who then give their notes on the following meetings with you. Don't worry. You will be getting the help that you need..."

She was so very nice.
i felt like she really understood me.

"I know this can't be easy, it impacts your life, keeps you from moving forward. We will be here to help you, help you find answers..."

They had a bipolar expert, PhD, MD on staff, but he is on sabbatical.
"But that's alright. We will find you a match - as close to perfect as we can..."

Huge sigh of relief.

I was on a waiting list since March 2010 for one other hospital.
"We will call you in July for an appointment for an assessment"

September rolls around. I call.
"It won't be before the end of October, but that does not guarantee you will get into the CBT clinic. Just so you know..."

Thank you. Not...

So at the other end of the city, my weekly commute will take almost an hour, but if i can be seen by somebody who cares, and perhaps, out of my misery and fucked up state of mind, will be able to care for somebody else who they will come across in their future practice who will have an equally fucked up state of mind, then all of this is a blessing.

Last night - restless. Bed bugs in my brain. Syphoning the logic out of every logical though, so that all was left was a infected irrational thought, poisoned, and throbbing, infected and disgusting.

Today, the sun alternating with the grey clouds kept me on my toes. Will it rain? Shall I dash for cover?
Oh, nope. The sun is coming out again.
Run into the light, bask in the warmth.

Walking out of the old world campus, tall turn of the century buildings standing like wise old professors over this young new pupil, head filled with glorious and grandiose ideas, silently guiding her along the path of self discovery and enlightenment.

***

I have my first swim lesson 2mrw.
Not so much a lesson as a perfection of techniques.
Want to feel efficient in the water again - a time when my strokes were effortless, poetic and fluid.

Looking forward to finding my equilibrium again, in the water and on land as well...

NeuroSkeptic

Critical information on something I have been thinking a lot about.

Thanks Neuroskeptic for the information!

Saturday, 2 January 2010

"Cortical Stimulation" for Depression

The last decade saw a number of new experimental treatments for depression based around the idea of using electricity to alter brain function - deep brain stimulation (DBS), vagus nerve stimulation (VNS), and transcranial magnetic stimulation (TMS).

The mechanics of these technologies differ, but they're all being promoted as options for "treatment-resistant depression" - depression which hasn't responded to more conventional approaches. They're also alike in that their usefulness is uncertain - either because there have been no randomized-controlled trials (DBS), or because the results of randomized trials are mixed at best (TMS,VNS).

Now there's a new kid on the neurostimulatory block: epidural prefrontal cortical stimulation (EpCS). This involves implanting electrodes beneath the skull, but above the meninges, the "skin" surrounding the brain. So it's unlike deep brain stimulation (DBS), in which the electrodes are placed inside the brain itself.

Late last year, Nahas et al reported on EpCS in a paper,Bilateral Epidural Prefrontal Cortical Stimulation for Treatment-Resistant Depression. They took 5 severely depressed patients, with either major depression or bipolar disorder, who'd all tried many treatments and experienced no benefit:

The mean age was 44.2 years. Four were women, and three were diagnosed with recurrent major depressive disorder; two others had bipolar affective disorder I, depressed type. All were unemployed, and three were receiving disability. The average length of depressive illness was 25.6 years. The average length of the current depressive episode was 3 years, 7 months ... participants had received an average of 9.8 unsuccessful clinical treatments during the current major depressive episode ... They enrolled in the study taking on average 6 psychotropic drugs.

Electrodes were implanted bilaterally over the "anterior and midlateral frontal cortex". This is as sensible a place to stimulate as any, although we really don't know what these parts of the brain do, or how they relate to depression. Nor do we know what "60 Hz, 2–4 V, 30 min on/ 2.5 hours off from 8 AM to 10 PM." stimulation does to these areas.

2 weeks after surgery the electricity was turned on, and the stimulation was then optimized over 2-3 weeks. Did it work? Out of the 5 patients, one didn't get any better, two felt somewhat better, and two were greatly improved at the end of the study 7 months post-op. And there were no major side effects or cognitive changes; one patient got a bacterial infection, but it was treatable. Hurrah!

But hang on. There was no control group, so the improvement could have been due to the placebo effector, more likely, the passage of time. The guy with the single best response, Subject 2, was as depressed as ever during the first 4 months, but then improved dramatically by month 7. It may not be a coincidence that this subject was bipolar. Bipolar people who are depressed eventually stop being depressed - that's kind of the point.

Indeed, all of the others who improved did so between 2 weeks and 4 months after the stimulation was started, not straight away. So it's not like flicking a switch and turning off the depression... but on the other hand it'sexactly that if you listen to what the patients say during the operation itself.

They reported feeling happier and less anxious as soon as the current was turned on (they weren't told when this was, so this is unlikely to have been a placebo effect). Some said things like

“I feel attentive,” “feel better and I can talk now,” “I can think clearer.” A patient noted during anterior frontal pole stimulation feeling as if a “weight [was] lifting off my shoulder,” “I feel calm”; another stated, “and although I am worried, I feel
dissociated from it. I can think back at my worry.”

Subject 2, the guy who got much better a long time after the operation, was the only patient who didn'tenjoy any nice effects during the operation itself, which only adds to my suspicions that he would have got better anyway.

What does all this mean? It's hard to say. The results are very similar to those seen with DBS for depression - patients report suddenly feeling happier as soon as the current is turned on during the operation (the only placebo-controlled aspect of the trials), but afterwards the improvement seems gradual, taking weeks or months.

There's two main ways of interpreting this. The optimistic view is that stimulating the right bits of the brain instantly treats depression, and the apparent "time lag" in improvement after the operation is a product of the fact that when someone's been depressed for so long, as these patients have, it takes time for them to readjust to normal life even once they start feeling much better.

The pessimistic view is that stimulating the brain doesn't treat depression, it just causes a "high" which doesn't last very long, and the subsequent slow, gradual improvement would have happened anyway.

This is why we need randomized controlled trials. Nahas et al note that there has been one randomized controlled trial of EpCS for depression, comparing active EpCS to placebo EpCS with the electrodes switched off. It hasn't been published yet, but a preliminary analysis found no difference between the two conditions - it didn't work. And that trial was more than twice as big as this one (12 patients vs. 5). But, they point out, in that trial only the left side of the brain was stimulated, whereas they stimulated both sides.

Overall, just like DBS, EpCS could be either a great leap forward or a waste of time, money and neurosurgery. Hopefully, by the end of this decade, we'll know. Watch this space.

letter to a doctor

Today, I was just so desperate.

Got a message from my G.P, that my shrink said he wanted to take my meds down by a huge chunk. I can feel the difference between 10-20mg, but 150 made me so nervous i cracked.

All the ooze just came spilling out.

It had to come out. I was rotting inside.

make of it what he will, but you know, this month being "mental health awareness month", it might be a good thing that this gets out.

Dear Dr. C

just got an email from my g.p who informed me that you advised I decrease my Welbutrin to 150mg from 300mg (i kept on forgetting to take the extra 50 mg because i had to manually split the pill, and by the time i did remember, i had started to get manic) and no Starnoc or Xanax.

I can honestly tell you that is going to be a big problem...

Since you are not at the office right now, i have reluctantly resorted to email because i think this needs to be sorted out very quickly. and apologize profusely for bothering you, but since we can't speak on the phone tonight in detail about this matter, i don't know what to do or who to turn to because I am so completely desperate, and if my mood gets worse, might have to make a trip to the emergency tonight.

I'm a) worried about going down to 150mg of Welbutrin. From 300 that is a HUGE jump for my system. And if the current 300mg is keeping me barely afloat on good days (in terms of depression), I don't even want to think what 150 will do to me. Those lows terrify me. I have tried to commit suicide in the past, and with those thoughts lurking close to the surface these past two months, would a huge decrease like that be a wise thing to do during this time?

and b) without Starnoc (with was the only thing that helped me sleep in the past, and i believe had been taking it while on Welbutrin approximately 3 years ago, and had taken it 6 months ago, and again on the night before my wedding because i had "an emergency stash) i don't see why it would be a problem now since i am still on Welbutrin, unless there is some policy about doctors giving prescriptions for getting medications over the border, or via the internet that nobody wants to tell me about directly, because up to now, i have not had any solid comprehensive answers as to why i can't take it now.

I find it beyond frustrating and infuriating that I should have to be penalized for not being able to get a medication that is readily available in the U.S but not here in Canada because somebody didn't do their job marketing it properly at the corporate level. I will call Servier Canada again this week, as well as the people at Wyeth (who are holding on to the patents but not giving information to if or when they will put Starnoc back on the market), but this time i will get all the names of people i speak to as well as everything i was told in writing (which was) "Starnoc was taken off the market - purely for marketing reasons", because when i explain my story, it seems to me that every doctor i tell thinks I'm full of it. I'm not a liar, just desperate to be able to get the drugs that help me get the sleep that i so desperately need.

as you know, Ativan and i do not have a good history. I skipped a dose one night and thought i was honestly going to die. And nobody bothered to tell me that going off "cold turkey" was equal to somebody detoxing cold turkey from alcohol or harder drugs. I had to find out the hard way.

It was beyond any word that terrifying can describe, and i never want to feel that way again. I don't want to have to take it (Ativan) on a regular basis because i don't want to be dependent on a sleeping pill, but the catch 22 is, if i need it, i will take it, but if i do take it for more than one night in a row I will have to keep on taking it because cold turkey or skipping a dose one night is not an option - so the only way to do so is to taper off. I want to take something only when i need it, and not worry about going "cold turkey" when i don't.

I hope that you understand my predicament.

And i'm not sure if I shared this with you, but, when i was on Ativan in the past, I had gone up to 2.5 mg (about 6-8 months ago ?) because the 0.5 mg initially prescribed stopped being effective. Right now, i'm up to almost 1mg. The pattern is sure to repeat itself, which once again, as stated above, the eventual outcome is not an option.

Immovane makes me physically ill, because the nausea from the metallic taste in my mouth last for 24 hours. And unless i take large doses of Trazadone (which recently, I have taken up to 2 pills a night), I feel as if i am completely stoned, clumsy, disoriented BUT not sleepy.

Sleep plays a big part in the regulation of my bipolar, and perhaps because i have not been able to sleep, has made me in turn, more manic. At this point, i am so completely desperate, I don't know what to do, and I'm sure it's not easy for all the physicians treating me, but I am so very terribly distraught right now, and with my mom's scan at the end of November, it's imperative that I remain calm, focused and be able to sleep, which will in turn, will allow me to be able to be calm, focused etc. If and when the cancer comes back, i can't afford for my sake, but mostly for hers, to be the one who needs an incredible amount of emotional support and/or physical care because i have had another meltdown.

And yes, I have tried yoga, acupuncture, meditation, hypnosis, Valerian root, Nytol, Tynenol PM, Benadryl , holistic/natural sleep medication, warm milk, bananas, turkey, Melatonin (which my pharmacist advised me against because of my thyroid problem), and have also asked her about SAM-E, but she also advised against it because i am on the Welbutrin and Lamictal, but aside from knocking myself unconscious, I don't know what else to do.

I will as of tomorrow, try to scramble to find somebody who will see me through the system for free because after consulting with my husband tonight about our finances, we simply can't afford to pay anybody through private practice. I had maxed out this year's limit with other "therapy/councelling/life coaching sessions" (at 175$ hour, and my yearly limit being $500) and since i am not working, or in any real shape to do so, unemployment has run out and welfare not really an option since we are "supposed to be making enough income" to survive, life seems at best, bleak. Over the years, I have been through the system many times. I know that after my first nervous breakdown some 21 years ago, the average waiting time back then was 3-6 months at best to see a doctor through the hospital. Honesty, I don't think that i will be able to last that long, (if not longer now) and that scares me, well, to death.

Once again, I apologize profusely for sending you this email, but i want you to know what is happening since you are following my case and do know me and my sorted history, but also because in my current state, am manic so can type quickly, and i can still type and weep at the same time, unlike talking on the phone - this needed to be told and don't know if i will be as coherent or in any shape to talk about this tomorrow.

If you would like, you can call me at home tonight.

I will take another ativan to try to stay calm, but 1mg will be tonight's limit, and i really hope that will be enough. If anything, my husband is at the ready to take me to the hospital if need be.

And tomorrow, I will be on a photo assignment from 10 to 1pm, and then away from 5-11pm, and Friday morning might be the best time to call me at home, but because i am (trying to) working with an organization that needs photos quickly, my computer is always on.

I'm attaching my mood charts so you can see what has been going on. In all actuality, October has been quite an uneventful month, and normally, that would have in turn, stabilized my mood. When things around me in my life get out of control, i tend to swing, but with a calm environment, my swings came out of the blue and have taken me completely by surprise and have terrified me.

Dr. C, thank you once again for your compassion and understanding of my difficult and complex situation, and once again, sincerely and deeply apologize for troubling you.

Sincerely,

HpK

ride the dragon

life has been chaotic these past few days and I have no clue why.

Usually, there is a direct corelation between my mood and what is going on around in my world, but lately, things have been, well, quiet. Non eventful. Mom saw her doctor who is sending her for scans in November (our little 3 month window has opened up wider for a few weeks), but no real "news". A follow up of sorts. So there was no real reason to get anxious.

but i am, and it's rough.

I have not swung this high or low in many many months. I'm thinking back to maybe a year, or two? And I'm not even taking the extra Welburtin that the doc prescribed to me. I don't even want to think what that would be like. When i tried it two years ago, I was flying into walls, and if i decided to augment my dose now, i might fly off of buildings or bridges.

so i try to put one foot in front of the other but I can't help but to be very nervous that at any moment, my manic instinct will kick in and i'll be running in the other direction, well, actually, with no direction in particular, in circles perhaps, until i collapse into a heavy weeping mess, looking to get lost in the spaces between horrible thoughts of suicide and exalted grandeur.

last night, I happened to stumble upon the movie - Control.

I had watched the whole film about a year ago, and it still affects me deeply. An instant vivid snap into a time in my life when death was a welcome respite from the exhausting whirling orbit of fear and elation that i lived every moment of every day for months on end. The fact that it is so breathtakingly beautiful to look at did not help to pull me away from not watching it, but as a result, i regressed to the tender age of 16, when life should have been full of promise and possibilities, but was devoid of life and hope, and where suicide was the only path to calm and rest.

15 minutes was all it took, and time began to warp.

And what i find odd was that my regression into these dark memories began during the point in the movie when the band is actually doing quite well; their career is taking off, interest in their music is growing, and the young men from Manchester are still filled with hope and optimism.

Just like i was once, a long long time ago.

"you know, E, the thought of suicide is never far enough in my brain. It's always "this" close to moving into the liquid plasma of my current existence. It's never far enough, and that scares me."

i silently wept as he lay on the couch. He was too buzzed after a night of jamming with the guys to truly grasp what i was saying, and I am not angry at him for that; it's the exact opposite - I feel sorry for him that he has to live with such a ticking time bomb.

when i was 16, Ian Curtis' deep oily crooning of life left unfinished resonated with something almost primal in my soul. Beyond the words, beyond the tempo, a mysterious and macabre comfort connected me to him. He got to complete what he wanted to end before i did. Each song is a testament to this.

Sometimes i am thankful for that, sometimes i envy him for beating me to the finish line.

swelling etc...

got to see the doc today - the swelling in my armpits has continued. It comes and goes, but it's been around for a while now. And then, this morning, the swelling under my chin, near my neck.

I have been losing my memory - forgetting little things, words, places, spacing out.

My joints have been aching - something terrible.

And peeing. So much peeing. No burning, just urgency and frequency.

so many symptoms, so many possible diseases.

I'm trying so hard not to think of worst case scenario right now. I don't have the energy, but when i saw the look of concern on my doctor's face this afternoon, i could not help but wonder.

so off to see stomach doc 2mrw, and blood tests for regular doc on friday.

I'm hoping that my vacation next week will be trouble and dire news message free while i am away...