Paging Dr. Van Winkle

When was the last time you woke up and realized you’d been a drugged zombie for 17 years?

That happened to me.  This month: May, 2017, I went through what is, I hope, my last withdrawal from psychiatric drugs.  (I remain on lithium, which is killing my kidneys slowly, but I need it, at least for now.)

And now I’m me again.  But who the hell is “me,” and what am I supposed to do?  Having been disabled by my various chronic conditions, multiplied by the even more profound disability of the drugs that were supposed to help me function, yet enveloped me in such a cloud of grey fuzz that I was insulated from both my environment and myself, I awake to find a gulf spread out between myself now and myself in the past, with no way to possibly bridge it.  17 years.

If it had not been for the drugs themselves doing what drugs do (side effects and adverse reactions), I’d still be moving about in a sea of brain fuzz.  I had no notion of stopping them on my own.  The opposite!  I was convinced that it was only those drugs that prevented me from the inevitability of suicide.  But even before I began getting serious side effects that contraindicated the antipsychotics and antiepileptics, I had started to sow the seeds for what would serendipitously become the replacement for not just one, but seven, psychoactive drugs, plus a prescription antiinflammatory.

I started taking cannabinoids as pain medicine.  Following a protocol hybridized from several in use, I began a scheduled dosage of cannabidiol (CBD), along with microdoses of THC.   I started this in the fall of 2016, and the pain relief has been superior to anything else, with minimal negative side effects and a whole load of positive ones.

When my antipsychotics began to cause extreme muscle twitching and movement disorder, I thought for sure I was doomed, because I really had benefited from their help.   The combination of brain without quetiapine and brain in withdrawal from same really did haul me to the brink.  And that was before I ever thought of cannabis.

Fortunately I had plenty of benzos to blunt the crash, but I’ve always been very careful not to get hooked on the benzos….and actually didn’t, despite being on them nightly since 1989.  More about benzos shortly.

The next to go was my darling lamotrigine.  Now, modern neuroscience tells us that bipolar disorder shares features with seizure disorders: there is a type of “kindling” that begins as a misfiring somewhere in the brain, which can then spread to other parts and finally, if that process is not interrupted somehow, involves the entire brain, causing an acute episode.  Medication and other treatments can stop this from happening, or at least blunt the reaction (note: CBD is shaping up to be a very effective antiseizure medicine, as proven in study after study).  Since antiepileptics help in bipolar disorder, that adds weight to the hypothesis that bipolar shares features with epilepsy.  Clearly, I did not want to stop my lamotrigine; but I developed the most feared side effect: toxic epidermal necrolysis.  This causes the layers of one’s skin and mucous membranes to separate and slough off, like a second degree burn.  It is incredibly painful and can be life threatening.  Fortunately mine didn’t get that far, but it was terrifying.  Bye-bye, lamotrigine!

I waited for the backlash after quitting lamotrigine, but none came.  By that time I was slamming the CBD every four hours, for a nasty episode of spine arthritis pain.  Either I had suddenly stopped needing antiseizure meds, or…wait….I was taking them–just a different one, for which my body has actual receptors: CBD, which activates CB1 receptors in the brain.

The winter wore on, and I found it necessary to have my injured left wrist operated on for the 4th time.  Even though that’s not a huge surgery, there would be pain afterwards, and if I hoped to receive any opioid pain medication, the benzos might have to go.  I decided to taper over six weeks, which is very rapid for benzodiazepines.  These drugs, which have helped me and many others immensely, are very hard to get off of.  Our bodies love what they do.

I was also taking Zolpidem, a sleeping pill that works on similar receptors to benzos.  In effect, I was taking two different benzos!  That had to stop.  And if that weren’t enough, I had a third benzo that I took when my PTSD broke through: clonazepam.  Three different types of benzodiazepines.

It wasn’t as hard as I expected.  The CBD stepped right in behind the benzos, and now that’s what I use.  The benzos didn’t make me stop having PTSD.  They helped me sleep and function a bit better in everyday life.  CBD does that too, and I feel like I’ve walked out of a wall of fog.

Along the way I got rid of the gabapentin (prescribed for neuropathic pain: THC works much better), and the celecoxib, which is supposed to be for pain/inflammation, but CBD/THC combinations work worlds better and cost much less.

Yes, medical marijuana is costing me much less than the copays for my prescription drugs, which at one point were close to $500 a month– with Medicare!  My oils, tinctures, and herbs are now costing me less than $200/mo.  Soon I hope to grow my own, which will cost even less and I’ll be able to grow organically.  I’ve substituted one botanical for eight pharmaceuticals.  Hmm, no wonder Big Pharma is all about patenting those cannabinoid analog drugs and suppressing the medical marijuana movement!

I feel like someone who has been sucked up by a vacuum and plopped down somewhere entirely different.  I can see where I was at the beginning, and I see where I am now; but the ground I have traveled is invisible.  It is a chasm.  I am no longer who I was then, and no longer who I was along the journey.

Fine, you say.  Congratulations!  But it’s not so simple.

You see, I became disabled from working at any job whatsoever on 4/4/2000.  Since that day I have maintained my medical license and all its requirements.  I tried to go back to work a couple of years after my breakdown, only to find that the system has quirks in it that do not include doctors with bipolar disorder.  I was trapped being sick.

I did do a few miscellaneous things with my time, but between my physical illness and my brain and its special disabling brain-drugs, I was trapped into being a sick person.

I have always felt that the brain part was the limiting part, since people manage to continue to work with all manner of disabilities, up to the point where the body simply puts on the brakes– like, for instance, the years I have spent on the toilet.  Or the years without use of my hands, due to joints falling apart and needing surgery.  Or the vexing problem of not being able to look up, down, left, or right, due to neck arthritis.

With my head out of the fog, I’m looking into the future.  It looks awfully scary.  I used to not care about the future, because I was certain of dying from one thing or another before I got there.  Now I’m not so sure, given the salutary response to cannabinoid therapy, that I won’t have a shot at another decade or so.

Problem is, I won’t be able to afford to live.  I have private disability insurance that will (if they don’t find a way to screw me out of it) continue till age 65, which is another year and a half.  After that, it’s Social Security, if there still is such a thing by then.  And although I’ve saved aggressively, I don’t have enough to even remotely get by.  And, lamentably, I don’t think I will be magically all better by then.  My skeleton will still be a wreck, and my guts will likely still be a-bleedin’.  I won’t be able to work at Wal-Mart, unless they have a back office with a bathroom.  

It’s a great grief to look back over that 17 year chasm, back to myself doing my doctor thing, the life I loved.  Now I’m just an aging sick person, soon to be an aged sick person living in poverty.  This was not what I requisitioned.  I did not work three jobs to put myself through The University of Chicago, to end up as one of the underhoused/homeless seniors I meet on the road.  I did not work my way through medical school and graduate school so that I could live the rest of my life disabled.  I did not work 120+ hours/week for three years of residency, only to become a patient myself, with nothing to show for my passion.

It’s tempting to throw in the towel, seeing what a colossal waste my life has turned out to be.  But not yet: I have time.  There’s always death waiting.  I want to see what’s out there, at least until my next surgery.  A joint replacement, and I don’t mean that kind of joint!

At least maybe then I’ll be able to play my banjo.  That really was the last straw with the “god” thing: taking away my hands.  If that very god looked upon me as I played, clinging to that banjo for very life during the hard times–since the moment I first picked up a banjo at age 19, it has been my comfort, my solace, and my joy where there was none before.  And my prayer, my meditation, my chant.  So if then there was some god watching as I played, and it decided to afflict my hands and take my one direct line to joy away, then I say….shame!  For tormenting the tormented.  

At least if I get a new wrist and can make it work, then I can sit and play and people will throw money.  I’ll be grateful.

Leave a comment

43 Comments

  1. I can definitely feel you
    Prayers and blessings
    Light and hugs
    As Sheldon Always

    Reply
  2. It sounds so hard, a never ending battle. Hugs xx

    Reply
  3. You’re being too hard on yourself. While you were working as a doctor, you did more on behalf of humanity in one morning than a Wall-St. type does in his entire lifetime.

    Reply
  4. ❀❀❀

    Reply
  5. Hello Dr. Laura,
    Good post. I think there are so many of us who have lost our true selves to mentalness and the drugs meant to help us.
    I can’t really remember how i used to be. I just know i was content and productive and happy.
    Question – Is it hard to find a competent MD to write a MM Rx? I asked my shrink to write one for me and he looked at me like I’d asked for carfentanil. Maryland approved MM years ago and is still squabbling over it. I’d like to be able to try different strains to find the best CBD/THC profile for me and not be stuck with whatever i can find on my own.
    You should be proud of yourself for weaning off of so many difficult meds. I’m right behind you.
    The future does seem scary but we have few choices. I’m still waiting for you to play me a ditty on your banjo! Doc

    Reply
    • Each state differs in how to actually implement the law. There are a couple of excellent resources that will enable you to access mmj laws for each state that has a program. MPP (Marijuana Policy Project) is my go-to. https://www.mpp.org/states/

      For help researching strains, my standby is Leafly https://www.leafly.com/

      And for getting one’s self educated on mmj and its health effects, try Green Flower Media’s whole amazing curriculum and especially Cannabis Health Summit, hours and hours and hours of lectures by top scientists including Dr. Mechulam, the Hebrew University scientist who discovered cannabinoids https://www.learngreenflower.com/

      That should get you started πŸ˜„. I’m happy to field specific questions, too, while you’re happily digging through this stuff. It’s kind of cool that it’s still kind of DIY. To me it’s playtime, since I’m still an ethnobotanist at heart….

      Now I’m psyched to do a post on how to get started with medical cannabis and how to get involved lobbying your state to get its ass in gear and stop obstructing the process, which is having a race with the melting glaciers….

      Hope you do get access, but for now you may have to make a trip to DC for supplies. You will want to look for CBD dominant strains such as Harlequin, AC/DC, Sunshine Daydream, Charlotte’s Web, and a growing host of other high CBD, low THC cultivars that you can learn about on the sites I’ve linked here. Some, like Charlotte’s Web, are hemp derived and have less than 0.3% THC, and some are actual hybrids that can have enough THC to treat neuropathic pain and even give a welcome buzz or at least a feeling of lovely well-being (can’t argue with THAT).

      Keep me posted!

      Reply
  6. It was purely by chance that I found cannabis more effectively treated my depression and anxiety than the cocktail I was on (that the doctor stopped prescribing because I told him weed worked better, then he dropped me as a patient). I’m glad it’s helping you – now if only it helped body parts regenerate. That pharmaceutical haze does muddy the waters and gives a sense of complacency. Reality can be nasty.

    Just so you know, you may not be a banjo plucking MD anymore but you’re still an amazing woman. You’ve kept me grounded, made me laugh and have also lit fires under my ass when I needed it. Yup. You’re awesome. Love you!

    Reply
    • Love you too, sweet lady. I’m honored to know you. I’m actually not sure that the right kinds of pot might not help in organ regeneration, at least in terms of cellular function. Maybe not as fast as 3-D printing, which really is going to be the not-so-distant future of transplant medicine, but as a stopgap, I think it’s a great idea. Best of all, it’s nontoxic, so no worries about harm.

      Reply
  7. Laura, mmj worked for my Mr. Sig Other for PTSD (Vietnam War vet). Same type, CBD/small dose of THC. I’ve followed your posts for a long while and know your history. Please keep the hope on this new path. I hear banjo music in your future. Hugs for a peaceful weekend. 🌺🌷🌸 Christine

    Reply
  8. You are amazing! I’m feeling yah throughout this post! Although I haven’t come off that many medications, benzos was the least favourite withdrawal and possibly the hardest for Me. I couldn’t replace with weed as it doesn’t agree with Me either … but it didn’t stop Me from trying πŸ˜‰ And what I’ve seen it do for others is amazing … so congrats on that!
    The fog … for Me, its only just starting to pass, and its been nearly a full year clear of the big pharma meds … Yes, its scary … and very cool! Can’t wait to see what you will do next πŸ™‚
    And if you end up homeless … you can come live with Me … you and Kara πŸ™‚

    Reply
    • Hey there! I was off the grid for a while. I think that’s a fantastic idea. How bout we find a little patch of land in Oregon, settle ourselves there, all us sickies. We can call it the Funny Farm! After all, Patch Adams did his Gesundtheit Institute, based on clowning…we can have our place, based on peace and quiet punctuated by silliness!

      Reply
      • Ohhhh, that sounds like bliss!!!!

        And off the grid sounds very therapeutic πŸ˜‰

        Reply
  9. Drugged zombie; huh? read this: http://wp.me/p73c6V-XX

    So good to have found you again!! We met by WordPress when I was The Taxi Dog. We both have stories to tell about renewal and survival. Some day I’ll get you updated on mine. Here’s a short version: another three months in the hospital, learning that my wife is beginning to experience dementia, moving ourselves into .an assisted-living residence. Short-and-sweet. You know how those things go.
    As a dyed-in-the-wool survivor (I have a lifetime supply of Woollex), I’m blogging again. Now about, you should pardon the expression, the psychosocial aspects of aging. Back in the day, I was a pretty good wordsmith! Maybe we’ll talk. I would be nice.
    I’m at http://www.LeageOfGrey.wordpress.com.
    Be well.
    Jonah
    So good to have found you again!! We met by WordPress when I was The Taxi Dog. We both have stories to tell about renewal and survival. Some day I’ll get you updated on mine. Here’s a short version: another three months in the hospital, learning that my wife is beginning to experience dementia, moving ourselves into .an assisted-living residence. Short-and-sweet. You know how those things go.
    As a dyed-in-the-wool survivor (I have a lifetime supply of Woollex), I’m blogging again. Now about, you should pardon the expression, the psychosocial aspects of aging. Back in the day, I was a pretty good wordsmith! Maybe we’ll talk. I would be nice.
    I’m at http://www.LeageOfGrey.wordpress.com.
    Be well.
    Jonah

    Reply
  10. “Now about, you should pardon the expression, the psychosocial aspects of aging which is the focus of my new blog”, he meant to say.
    Much better about the aaphasia, but every onne in awhile… /.// . ///.
    Its gettitting late.
    B’bye.
    J

    Reply
  11. Hello my friend
    You have given me hope as well. The policy in Texas is to narrow only for Epilepsy, so I’ll trek to where I have to. I’m off many drugs for Lyme although still sick. The hardest pain is neuropathy and Lyme Arthritis. If smoking would relieve the pain I’m all in. It sounds like you trek to DC?
    Glad to hear you can move forward in control and live with more freedom in life.
    M

    Reply
    • Oh no you’re in Texas??? You must have your reasons….

      I’ll do a post soon on exactly how I use the Herb. Take care!

      Reply
      • Thanks, no rush. I used your links and found others on the Texas site.
        What’s the problem with Texas other than the August heat!
        M

        Reply
        • Cruz and Cornyn, and Midland, and a few other gems.

          But then there’s Big Bend and brisket and a whole lots of those kinds of gems πŸ˜‰

          Reply
          • We have our share of political issues. I say to the TV every time I hear something. Throw them all out, get rid of this job for life crap, limit the term. If they meet to discuss what is important for the state Don’t get into a fist fight and threaten someone. Kids hear that crap, it goes in without knowing. That’s another long post. I had Cervical cancer at 28 and had a total Hysto, everything. My design about kids was permanent but I didn’t;t want kids. It just seemed so young and not married to let them take my ovaries. The rick where high with all the direct relatives and I didn’t want it to spread.
            Long story short, I know what everyone needs to do with their kids better than they know!
            M

            Reply
  12. I’m so happy for you that you see a way through, can see clearly for the first time in nearly 2 decades. Such a vibrant time for you I’m sure πŸ™‚ Ready to explore possibilities. I empathise with your loss of time, ability, joys of life, hard-earned gains that slip between your fingers. Success sabotaged by illness. I can’t begin to imagine what that feels like. I can relate to the ‘waiting of death’. I know the fear of not knowing if you’ll be able to afford to live. I hope soon, you’re able to strum out some beats with your banjo. Your life will never be a waste. Not to me. I know I’m just a stranger in another foreign country, but your experience and wisdom, compassion and humour have made a difference in my life. For what its worth

    Reply
  13. What a story. I am so greatful I have been able to side step the meds. I have significant ups and downs but am able to get through them. I see a nutritionist regularly…have for ten years and the supplements greatly help me stay level. Sorry for your pain. I Renner being on lithium for a short time in 87. I gained 30 pounds that I have never been able to lose and everything tasted metallic. I hated having flat line emotions. Back in the 70s I was on things I do not remember the names of except Marplan. Some changed my voice and hand writing. I took Prozac from 87 to about 2014 or so. I only take celebre for my arthritis now. I am so happy I am practically drug free. I am 70 plus. You will be in my prayers.

    Reply
  14. Dr. Laura this is a fine post and I hope that you have educated lots of folks. I have known about the good effects of CBD and low dose THC. The problem is that it is still not legal in all states. I am very worried about Trump and Sessions taking it away from folks that have benefited so much from medical MJ and hemp. It has been a God send to people that were actually dying from the meds that were used to control their mental disorders, seizures and, things such as auto immune diseases. You know first hand the hell that you have been through and I’m glad that you have been able to switch to medical MJ which has no side effects and now gives you hope.

    I know you feel you life has been wasted but I don’t believe that. You are a strong woman and a survivor and I think that before your illness that you were an excellent physician. You still have a purpose in life and something to proud of. That’s my assessment and I’m sticking to it. Hugs to you and your dog.

    Reply
    • Thank you, dear Yvonne! I have lost the fire, is the problem. I think the last head injury did something in there somewhere. I have not had any “get up and go” since then. No “fire in the belly.” At least with the mmj I’m not losing my balance and falling, like I was on the Rx drugs. But I was hoping my life-spark would come back….it’s only been three months, so maybe it takes longer….I don’t know whether it’s that, or TBI, or bipolar long term effects, which my shrink thinks…but of course he’s a shrink so he thinks that πŸ˜‰

      Reply
  15. Loretta

     /  June 4, 2017

    Hi again, Laura. I found you and your blog a couple of years ago because of some no-nonsense comments you made to a group of Medscape posters who were lambasting patients like me (dependent on opiods to give me enough functionality to do the big things in life… like hygiene.) I have chronic pain and opioids help, but I have to take a lot of them… and I’ve been stable on this amount for nearly 10 years. You stuck up for me without knowing me because you spoke truth… to idiots who seem to have all the power. After I read that Medscape comment you’d posted, I searched for you because I was going to travel across the continent to become your patient because you gave me Hope, and Hope is so important. When I finally found you, I discovered that you didn’t have a practice and I couldn’t book an appointment. But… do you know what happened? I found this blog where you’re still a healer. You’ve kept my head above water and you’ve continued to give me hope because you talk about your incredibly difficult path in this blog and really connect with your readers… it’s kind of like you’re “breaking trail” for those of us who follow you. I’ve been living through an incredibly anxious period of life because the medical associations and politicians are persecuting chronic pain patients to take away our opioids. Your experience with CBD and THC gives me hope (again) – I’m going to check out the sites you’ve recommended. Thank you. I’m facing poverty at the end of my disability insurance too – I’m 62 so I’ve got 3 years to pay off my debts (I fear I’ll never make it) and get ready for poverty and old age. Remember the hippie-dream aspirations commonplace in the ’60’s? I think that, if you proposed a commune, you have enough like-minded followers (who also love and have dogs) that maybe we could pool our resources and get one going. If you do, count me in, my dear.

    Reply
    • I’m sitting bundled up at the beach in Northern California and my hands are numb, fumbling on the keyboard….

      Yes, I think a community for people living with chronic illness is a great idea. I’ve been thinking about exactly that, and it’s popping up in other people’s comments too. It might be time!

      What’s your vision?

      Reply
  16. Great post! I really relate to a lot youve written. Thank you.

    Reply
  17. Hi Laura. Did you ever have vertigo from lamotrigine? I’ve been crippled by this for the last 7 months. Been to 2 ENT’s and told its neurological. But the vertigo only started once I reached my therapeutic dose of 300mg. So I dropped back down to 200mg. But the vertigo persists. Before I go the expensive neuro route I want to explore all options and am highly suspicious of lamotrigine. I’m considering doing what you’ve done – come off everything except lithium and use cananbis oil. I’d appreciate any suggestions. I’m at my whits end. I can’t carry on living like this. In south africa we don’t have any government support for illnesses. I HAVE to work. My only other alternative is I have no choice but to end this suffering one way or another. I’d appreciate any advice

    Reply
    • I hear. I’m sorry you’re suffering. You deserve much better!!!

      You’re welcome to contact me moxadox at gmail dot com. We will see how to work with what you have available to you ❀

      Reply

What's your take?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: