No one sings like you anymore

Trigger Warning: meandering discussion of suicide and substance abuse

http://www.rollingstone.com/music/news/chris-cornell-autopsy-and-toxicology-report-released-w484309

This RS article rocked me to my core, kept me up writing and thinking two nights in a row.

Depression, trauma, substances. Stigma, shame, and suicide.

First, the substances. Ativan is usually prescribed in 1 mg tablets. No matter how it is administered, 4 mg is the max recommended dose. The nanograms per milliliter of blood measurement used here is extremely difficult to translate, even using an online conversion tool, so I have no idea how much he actually had ingested, but I am guessing 5-6 mg since they are saying more than the usual dose but not one normally  associated with fatality. That makes sense according to his wife’s statement that he took “a couple extra.”

Info about Ativan (lorazepam): https://www.drugs.com/amp/ativan.html

Butalbital as far as I know is not available by itself but is commonly prescribed in a compound formula for “tension” headaches which most specialists now understand are part of migraine disease. The brand name of the butalbital/ caffeine/ acetaminophen compound is Fioricet. I have used this med on and off my whole life, formerly concurrent with Xanax or Ativan. It also is available with codeine, which is what I had been prescribed (I now have Fioricet without codeine and no longer take anti-anxiety meds). The article does not mention acetaminophen, but does mention caffeine, which they claim was from No-Doz. 

Info about Butalbital, a barbiturate: https://en.m.wikipedia.org/wiki/Butalbital

Did Chris suffer from migraines? Or as a rock star in recovery, was he able to get this combination of meds specially prescribed for anxiety and / or insomnia? Many former drug users in recovery are prescribed Ativan. (But why take caffeine separately, particularly with sedatives? Was it a “cocktail” he’d discovered that produced a non-narcotic, non-alcoholic high?) The naloxone is interesting too. It’s an antagonist, but in combination with these other drugs it could (maybe?) act similarly to a narcotic in increasing the effects of the depressants. Naloxone only stops the action of opiates. [Editing again to add that I read one article stating Naloxone (Narcan) may have been injected by emergency responders after he was found.]

Also in his system when he died was pseudoephedrine, brand name Sudafed. It is taken for sinus pain / headache which also can be part of migraine disease. Like caffeine, it is a stimulant. The combination of sedatives, barbiturates, and stimulants is particularly dangerous.

In my 20s and 30s there were many instances when I took the above meds together as prescribed for migraine, with an opiate as well, and then combined them with a lot of alcohol during nights of social binge-drinking. I also had occasional extreme mood swings which, I realized with prompting from John, after I was no longer taking it, were brought on by the Fioricet 3 (w/ codeine) in particular, exacerbated by the anti-anxiety meds. These sudden bursts of intense emotion included both violent rages and severe depression. [Editing to make clear that the violence was against inanimate objects, not people or myself.]

As well as feeling incredibly sad about the circumstances surrounding Chris’s suicide, I am sort of feeling damn lucky to be alive. I think I am made of stronger stuff than I realized. 

I keep adding to and revising this post. And I am so fucking sad, getting more and more so. Chris Cornell was a grunge success story, a man who grieved for and celebrated the tragic deaths of friends and fellow musicians, most famously in Temple Of The Dog, and who seemed to triumph over trauma to choose life, to choose music and family and love and philanthropy and friendship over giving in to despair. John told me the song “Slaves & Bulldozers” basically saved him as an adolescent recovering from abuse. He sent me the lyrics in a text the day Chris died, and they read as though Chris himself may have been molested or raped. As fans know, he ended with that song in Detroit hours before his death, blending it with “In My Time of Dying” by Led Zeppelin. If my wings should fail me Lord, please meet me with another pair.  /  I hope I did somebody some good. / So I can die easy…..  The song is filled with Catholic imagery. Like John, Chris went to Catholic school. Like John, he seemed to worry about his soul. Like John, his parents got divorced, and considering Chris chose to use his mother’s maiden name in the aftermath, it may have been messy and horrible. 

I just read an article about how the stories surrounding this death relate to the stigma involved with suicide as well as medications. When someone dies from opening up the veins in their arms, the razor blade isn’t blamed, the author said. I see her point, but also see the flaws in that argument since weapons don’t alter one’s thoughts the way many drugs can. I maintain my agreement with Vicky and my own statements throughout this post regarding the devastating mood effects the combination of butalbital, caffeine, and Ativan can have. HOWEVER. Depression leads to suicide. Ativan and Butalbital did not kill Chris Cornell. Depression did. The meds may have altered that triumphant will to live despite the darkness just enough for him to give in to the rain that couldn’t, finally, be washed away. Depression needs to be discussed without shame and blame. Depression kills. 

As for me, please know that I am MUCH more careful with medications now. There is no reason to worry about Current Me. But Past Me? Damn girl, that was some stupid, careless shit. Careless because of my occasional choice to start drinking before all the chemicals were out of my system; but yet, I was taking legitimately prescribed meds for the symptoms of my illness. And I could have died. Why didn’t I? Other than occasionally wanting to go to sleep and never wake up I have never truly felt suicidal (exceptions would be when I took Topamax and other anti-epileptics, but even then it was sleep forever type suicidal). I have never had to engage in that fight to overcome constant thoughts of ending my life.

I am more relieved than I can say that my family was spared the agony Vicky and her kids are enduring right now, because I think she was right. Without that strange but familiar-to-me cocktail of meds, maybe Chris would not have taken his life after surviving so much for so long; after publicly grieving the early deaths of his friends and contemporaries; after marrying again and producing children who are still young (he also has as an older daughter). There but for the grace of John, X, & Zo go I, as paraphrased from Winston Churchill, Sherlock Holmes, and Simon & Garfunkel. Or maybe, I simply was never at that kind of risk because my own depression never convinced me my family would be better off without me. Suicide is not selfish. For those who suffer that severely it can feel like the only option. Suicidal ideation, especially exacerbated by mind-altering drugs, tricks you into believing your loved ones will be better off without you to bring them down and perhaps ruin their lives as your own feels ruined beyond redemption and repair. 


Chris Cornell, you beautiful, troubled man, thank you for creating art that soothed my traumatized partner in his youth. Thank you for your words and your voice, which sustained much of Generation X when we were falling on our own black days. What trauma did you suffer in your own childhood that created the anxiety and depression you sang about and spoke of in interviews? What supreme sadness bubbled to the surface that made death seem like the only way out?

This post has morphed many times. It no longer flows as well as I’d like. But there is nothing easy about discussing depression, trauma, grief, and suicide. PLEASE, readers of my blog, sufferers of chronic pain and depression and PTSD, substance-users, whether illicit or prescribed or both, trauma survivors, suicidal-thought fighters, you are not alone. You are worthy. Whether I know you or not I am glad to share this planet with you. Get through the next hour, the next day, one moment at a time. Get help. 

I am so glad I got to see Chris perform in his grunge heyday. I am so glad that despite frequently imbibing nearly the identical combination of meds found in his toxicology report, I am still here to rock out to and revel in his tortured genius, his swan songs; that, as Eddie Vedder triumphantly bellowed through the pouring rain at that same Lollapalooza in 1992, I’m still alive. 

I just wish Chris Cornell were still alive too. Oh but do I deserve to be / Is that the question? / And if so, if so / Who answers? 

Who answers?



Serotonin Stockholm Syndrome

For those of us struggling every day with chronic invisible illness, one of the most discouraging feelings is realizing that someone may not believe the pain we’re suffering. It might be the careless observation of an acquaintance (“But you don’t look sick”); the frustrated words of a well-meaning friend (“You’ve tried so many medicines and NONE of them work?”); or someone on Facebook who links info about the newly-approved Cefaly neurostim machine on your timeline with the assumption you’ll now be cured. But when this minimization of pain feels the worst, at least for me, is when it is your own doctor who seems to not take you seriously.

I felt extremely lucky, recently, to get a timely appointment with my neurologist, due to a cancelation, which I wrote about in my previous post. I had been dumped by my PCP who had been prescribing my meds and was in a tight spot. I was realizing maybe I relied too much on pain medicine to get me through tough times, or even not so tough times, setting me up for bad rebound patterns. Dr. T agreed and did not prescribe any more pain medicine or benzodiazepines, saying I’d come a long way. Treat only twice per week, she said, with Imitrex. Yes, I suffer daily headaches, but by going to this Headache Workshop and that Pain Therapist / Biofeedback Practitioner I could maybe work my way down to two treated headaches per week. In spite of no longer being able to hold a job, and having recently been determined to be disabled by the government because of the intractable nature of my disease, I still wanted to believe.

On my way home that day, studying my print-out from the appointment, I saw with relief that Dr T had left the medications in question as “current” on my file. I assumed that meant if I was in a bind I could still use those meds occasionally, and with that flexibility I felt even more that this plan was something I could do. Relaxation, visualization, biofeedback, better rest, exercise, food, YES! I could DO it! And if not, a month of pain medicine here and there to off-set daily use of the Imitrex. I felt good about things. Hence the post “Good Things.”

Yet even at my most optimistic, I thought about how I’d never been able to treat headaches only twice per week in my whole life. Even with parent mandated healthy meals and bedtimes; exercise in gym class; a counselor father skilled in progressive muscle relaxation and biofeedback with whom I practiced the techniques daily, my migraines were always closer to chronic than episodic. I knew it would be a long, hard road, particularly because simply NOT TREATING, trying to relax, meditate, ice-and-heat my way through the pain had always backfired with vomit-filled hysterical trips to the ER. And in fact I did have to go to the ER the day after my appt with Dr T, and then again a few weeks later. One seven day period I managed to take only 2 1/2 imitrex, but after that, due to weather and stress and lack of sleep and who knows what else, I slipped back into a daily pattern of pain. I had to leave the Headache Workshop early on Friday and stopped at an Urgent Care on the way home, where they prescribed 8 Norco tablets. Less strong than Percocet, less acetaminophen than Vicodin, they worked pretty well. After a few more days I did go to the ER yet again, and afterward decided it was time to see if I could get a 30 day script for Norco maybe, to complement the Imitrex until I made it through this cycle, especially since it is not as strong as Percocet, Schedule III instead of II. I called and spoke to the nurse who runs the Headache Workshop, the one who had heard in class how anxious I’d been feeling about having only one abortive at home during our mandatory discussion of “uncomfortable feelings.” I thought it might help me that this nurse now *knows* me, and at first it did seem to help as she listened to my situation patiently.

However, when she called back late the next morning and left a message after talking to Dr. T, she sounded uncomfortable. She said that I had “done so well coming off them by myself” that narcotics would not be reintroduced. Something was mentioned about my decision to reduce my Cymbalta – maybe I should go back up on it, she said (I had stayed at 30 mg). Make sure you go to the biofeedback, she said (I AM), and maybe see if “the physician who prescribed the anti-anxiety medication” would let me try something different if it’s not working. Now, that seemed almost passive aggressive. Yes, I picked up my last Ativan refill, but it was prescribed by the doctor who dumped me, which I thought they knew, and while it is helpful for sleep it does not relieve pain and neither does Cymbalta. So what I ended up taking away from the long awkward phone message was that Dr. T thinks that my pain is anxiety-produced, psychosomatic (to use an older term), or more to the point, “all in my head.” That it could be better “fixed” by returning to a higher dose of a brain-tweaking anti-depressant which I told her I hated than with the milder narcotic pain reliever I had requested. I felt punished. That they thought because I’d used the last available Ativan refill I couldn’t be trusted. That because during Workshop with this nurse I had expressed anxiety about having only one abortive medication at home, my admission was being used against me in the actual treatment of my illness by the last doctor in whom I still had been able to place a modicum of trust.

So here I sit, tears streaming down the right side of my face, where the sharp burning radiates from forehead to temple, behind the ear to my neck. I have located enough Imitrex to take it daily; when I run out I will have to return to the ER, where the more you visit, the worse you’re treated. Two imitrex today, and yes, the dastardly Ativan to calm my angry, scared pounding heart, orally disintegrating Zofran for nausea, a camphor pain patch at the site of the invisible impalement of what feels like splintered wood dipped in acid protruding from my skull. My whole self, slumped in disappointment and defeat. A cooling “micropearl” band velcroed as tightly as possible above my eyes, holding my protesting scalp in place, adding to the indignity. Benadryl, Zanaflex, all my “helpers” but not the one addition which could break this cycle and make me more comfortable, prevent me from needing to take the Imitrex every day, some kind of precious elixir of the opium poppy or factory facsimile. But no, because I am no longer deserving. Because I am a flickering file on a laptop screen, shimmering numbers which no longer add up to a patient worth bothering with or a real individual in pain. Textbook treatment. While every single migraine medicine causes rebound, cheap, old-school narcotics get the bad rap. Big Pharma’s serotonin-messing triptans, antidepressants, anti seizures, even antipsychotics are what get pushed. It’s an assembly line. I am a faceless cog in the machine. Serotonin Syndrome, Stockholm Syndrome, they won’t stop until I’m brainwashed. Until I accept that this is all there is for me. “For you, there isn’t any more.”*

And yes I know that any headache specialist or neurologist these days advises against narcotics for migraine pain. I know it’s the “right thing,” what she’s doing, in a typical case of migraine disease. But I have never been textbook, and I was ready to try this better accepted way as long as there was a little flexibility. I have been on a narcotic or barbiturate analgesic of some kind as well as an ergotamine or triptan migraine medicine plus a preventative and separate anti-depressant and/or anti-anxiety med since I was a child. And now, at 40, I am cut off just like that and expected to “relax,” do a bit of biofeedback, go back to my higher dose of Cymbalta like a good girl?

I don’t think so. I deserve the individualized treatment my complicated history demands.

But “for you, there isn’t any more.”*

*thanks to The Troops for Truddi Chase and their amazing chronicle of DID When Rabbit Howls for the quotation.

20140313-211605.jpg

20140313-214135.jpg

My Own Catch-22

My long-awaited appointment with my neurologist, whom I saw for migraine for at least ten years before switching to Dr. H, is approaching on Tuesday. It took me months to get in with her; I’m a new patient again.

I am unaccountably nervous. So much depends upon this appointment. Are her treatment methods still the same? Will she have heard of or be trying anything new? Will I be able to make an appointment for Botox injections, which my insurance WILL cover since the doctor who administers them is in fact a neurologist?

I am afraid the hysterectomy will horrify her, that my appearance of “crawling back” now that my other doctor is no longer practicing will annoy her, that my chronic daily headache status, probably brought on by unavoidable medication overuse, will be disappointing to her; the great and famous and incredibly busy Dr. T. Why did I leave her care in the first place, she will wonder.

Dr. G T is a Big Fucking Deal in the field of neurology in the tri-state area. She is the best of the best. I hope she still finds me worth her time. I hope I can continue on my same meds, receive the Botox, and benefit from her up-to-the-minute research and ongoing studies.

The following is a document I wrote to fill her in on my treatment history over the past six years.

TREATMENT SUMMARY 2006 – 2012
Began seeing Dr. E H (general practitioner) for headache care due to her association with our local hospital and convenient location near my house. She actually offered to take on my case when I was hospitalized under her care (we are guessing that was around 2006). I believe that she still consulted with Dr. T occasionally.

• We discussed that she would be continuing the same style of treatment that Dr. T had utilized, and simply transferred my same medications to her office.

• She switched me from Zoloft to Cymbalta for depression with migraine which was very successful. Eventually another switch was from Fioricet 3 to Percocet to avoid the caffeine / butalbital increased likelihood of rebound.

• Headaches began to be more hormonal in nature – problem only increased after second pregnancy and delivery. After cessation of breast feeding things seemed to only get worse. ER visits increased. During this time I also began to experience severe mood swings and an interesting aura characteristic which made my nose swell and become quite red. After research, realized I was having hot flashes.

• Tried a few different tricyclics for prevention (had been on Elavil) – none seemed to work – eventually stopped taking standard preventatives. Did continue gluten-free diet and avoidance of triggers, etc. Hormone, weather and stress triggers most problematic.

• As I transformed into a Chronic Daily Headache pattern, Dr. H tried to get me into the inpatient clinic at U of M, but my situation wasn’t severe enough. They scheduled me an appointment with a neurologist there instead, who suggested baths with Epsom salts, magnesium supplements, and gave me a couple of those nerve block injections in my neck. The nerve blocks didn’t help at all, and I was insulted by the other suggestions.

• Saw a pain therapist / biofeedback practitioner connected with U of M for several months. Also seemed to have no effect, was not covered by insurance and was a long drive. However the LISW guy was kind and talking about the effect chronic pain was having on my life was a relief.

• Saw a pain specialist locally and he said he couldn’t do anything with me until my pain cycle was more under control.

• Was getting headaches every day, severe 4 times per week, using too much medication and missing a lot of work. Was going to the ER every month. At ER, Dilaudid with Zofran, or a Phenergan / Benadryl combination is all that would work; they also occasionally gave me Decadron. Sometimes it took two visits. 2 -3 day hospitalizations for DHE became more frequent. Rarely used DHE myself during this time due to frequency of Imitrex use; pain was too severe to wait until enough time had passed to safely use DHE. When I was admitted, they would give me Dilaudid for acute pain in the ER and again upstairs until the 24 hour marker had passed from the last Imitrex taken.

• Briefly saw a chiropractor again- felt the chiropractic care made me worse.

• In 2010 Dr. H mentioned that due to my previous issues with endometriosis and cysts, early menopause symptoms and now the hormonal headache, I might be a good candidate for ovary removal. My tubes were already tied. I was fine with this idea.

• After a 6 month period of being hospitalized or having multiple ER visits every month during my period, Dr. H sent a letter to a surgeon / OB at the same office where I had my prenatal care. I made an appointment, and the doctor there agreed to do it right away because of my extreme situation. J and I contacted our insurance and they agreed to cover the procedure.

• Dr. M P completed a trans-vaginal total hysterectomy for me on July 12, 2011. There was endometriosis present. Recovery from shock to my body / hormones was slow. I was re-hospitalized soon afterward as I tried desperately to adjust to my lack of hormones and using the estrogen patch. Our goal was for me to go to Dr. B at the Compounding Pharmacy for hormone replacement; when I finally got an appointment there he made me a mixture (estrogen, progesterone, and DHEA) to take orally. Again, adjustment was hard.

• I loved Dr. B but my headache situation began declining after switching to his oral formula. Also his staff was unable to have refills ready on time. I was hospitalized for intractable migraine in fall of 2011 and seen there by Dr. S “Manhands” who practices with Dr. H (also during hospitalizations I would see a neurologist – Dr. Mahmood). Dr. Manhands is a little more blunt and traditional than Dr. H and questioned why, without a uterus, I needed to be taking progesterone. He said I needed to be back on the patch and thought I should try another preventative, suggesting Lyrica. I said I would try that as well as the patch.

• The patch caused an improvement, and I have been on the Vivelle Dot .1 twice-weekly patch ever since. Also around that time I began to again take 400 mg/day of B2, as well as Magnesium, and Feverfew. Also tried Butterbur and CoQ10. I still take all of those except the Butterbur every day as well as a Super B vitamin. The Lyrica after about 6 weeks seemed to be causing depression, which is the usual with me and anti-seizure medicines. I stopped taking it.

• Dr. H and I began to discuss the possibility of Botox injections, which I had at UT with Dr. Pr before it was approved for migraine by the FDA. The first time (at UT) it worked great and then each subsequent time it worked less well so I stopped. Another doctor in Dr. H’s practice had taken a fellowship to be able to administer the shots for migraine so we began to set it up. At the last minute it was denied by insurance because Dr. K is not a board-certified neurologist or pain specialist.

• Dr. H prescribed 2 mg Zanaflex to use as needed and I found it to be an effective “helper medication.” I did some research on using it as a preventative and some studies seemed to indicate that it was successful in reducing chronic daily headache. I talked to Dr. Manhands and he upped the prescription to 4 mg, 60 per month. I break it in half and take 2 mg every morning and 2 mg with other medication when / if I get a headache; more if the headache is severe.

• Dr. H had to stop practicing medicine due to her increasing symptoms of MS. Due to her particular characteristics of empathy, availability, and excellent instincts, I felt safe with her directing my migraine care but wouldn’t feel comfortable with any other “regular” doctor so I decided at that point to come back to my neuro and made the appointment. Since the appt was months away I asked Dr. Manhands to take on my care on a temporary basis. He suggested another preventative, Lamictal, which I had taken before but agreed to try. I have since stopped due to severe depression, again. Have also seen another pain therapist (locally, no biofeedback this time) and found it boring and predictable and stopped going.

• The hysterectomy improved the menstrual headaches and mood swings and I have FAR fewer ER visits, but the “chronic daily” pattern for the most part did continue, except for better weeks here and there. Lately have begun to use DHE more often to break rebound cycles on my own – going to hospital much less because of lessened severity and being able to wait out the pain to treat with DHE at home. I have the same number of “headache days” but pain is less severe. (When missing work however it is hard because I don’t have the “proof” of ER papers to show my boss. For 3 or 4 years every time I had to call in sick at the last minute, I was able to show proof of how dire my situation was, which caused less enmity from my co-workers and supervisor.)

• I had hoped for a decrease after the hysterectomy to three headaches per week. When this didn’t happen, I decided to shift my treatment expectations from “cure” or “significant improvement” to “successful pain management.” Right at that time, Dr. H left, which threw everything into a tailspin.
• Last ER visit: July 15. Previous before that was April 1.
Last hospitalization: Mid-February 2012

Switched, Tried and Discarded Medications:
Switched from Zoloft to Cymbalta*
Switched from Baclofen to Zanaflex*
Switched from Phenergan to Zofran tablets*
Stopped taking Elavil; tried 2 different, more unusual tricyclic antidepressants
Due to rebound and side effects switched from Fioricet 3 to Percocet*
Estradiol once weekly patch
Lyrica & Lamictal anti-seizure meds (never again!)
Oral estrogen with progesterone to Vivelle Dot .1 biweekly patch*
Butterbur, Valerian, 5-HTP, White Willow Bark, Gingko, Ginger – all in one
Ultracet
Xanax (anxiety and sleeplessness pre and post hysterectomy) back to Ativan*
*successful change

Current Daily Medicines
Synthroid .75 mcg
Cymbalta 60 mg
Zanaflex 4 mg
“Migrelief” (Feverfew, Magnesium, B2)
CoQ10 200mg / DHEA 50 mg
Calcium 1200 & Vit D 2000 (post menopausal)

Current Abortive / As Needed Medicines
Imitrex 100 mg (prior authorization for 18 per month)
Percocet 5/325 30 per month
Ativan 1 mg (for pain with sleeplessness & with DHE) 30 per month
DHE-45 IM injections 10 for 3 months
Zofran tablets 4 mg

Over The Counter Medicines / Naturals
Psuedoephedrine and Mucinex
Anacin or Excedrin
Ibuprofen 800 mg
Benadryl or caffeine tabs
Hyland’s Naturals Migraine tabs (contain belladonna)
Capsaicin nose spray

———————————–
Of course, nowhere there do I state that I have lost friends; that I constantly feel like I am letting down my family and frustrating my co-workers. I have been wanting to volunteer for my friend’s campaign for Ohio House and have been unable to.

I want to be normal. That is what X said while J was in San Francisco recently, breaking my heart as I had to ship the girls off to my parents’ once more: “Mama, I wish you could just be a normal person.” not said with malice or even frustration, just… sadness. I told her the migraines hurt my heart more than my head.

And yet if I were suddenly normal – I wouldn’t be me. I wouldn’t know how to live. I am the headache and the headache is me. But a couple fewer of them per week? No longer having to cancel all the plans I risk making, miss so much work, let down the people I love? Yes, please.

And if anyone can help me get there, it’s Dr. G T. Please keep me in your thoughts Tuesday morning.