So I made the move back to civilization from the mountain house, and I’m loving the new apartment and the new job. More than anything, all the fear wrapped up into not being able to perform at the new job is beginning to dissipate as the Post Interferon Syndrome headaches have been so diminished with the new meds. After Interferon I was so shocked to have that brain fog penetrate through and destroy my quality of life for many years after I stopped Interferon. I mean it sucks even worse because the doctors won’t admit it’s happening, blame it on other things, and tell you such idiotic things as, “Just take a multivitamin” or when you tell them about your symptoms kind of look down their nose at you and state “Well, if you say so.” I mean it’s quite remarkable really, how online you can find multiple people suffering from an almost universal diagnosis, and then go to three educated doctors in a metropolis like Atlanta, and have your General Doctor, your Gastroenterologist and your Neurologist, all basically say Interferon has no lasting side effects, so this must be an anomaly or just in your head, or even that you’re being a hypochondriac to the point you almost question it yourself. But I wrote about it, I journalled and I was even able to stop working for a while, move out of the city and see if it was allergies, pollution or something I hadn’t thought of, and the headaches persisted. I was still, 3.5 years later suffering from brain fog type headaches at least 66% of the time, which made selling, or making cold calls very tough if not impossible. So in 2012, facing a new job, a highly micro managed job, I was really scared I wouldn’t be able to perform because of the headaches. Two or three weeks into it, I was still suffering 2-3 days during the week, so almost out of hope, I decided to take a scientific practical objective look at what meds might possibly do for me. This is despite my being a member of Alcoholics Anonymous and opposed to being on any mood altering substances. I had tried anti depressant while I was beginning Interferon and I had been so early in sobriety, I felt like it made me more squirrely and even so uncomfortable that it made me think of drinking more often, and trust me at one year sobriety, I wasn’t in a position to be flirting with that possibility. Especially as I was just starting my battle against Hep C, the disease which attacks the very organ my liver uses to process alcohol. So my attempt at mood altering substances, or anti depressants had gone so bad I just was afraid they would make me want to drink again, but at 5 years sober, the headaches practically making me an invalid, I finally decided, hell or high water, I would give several different substances, 90 days or so, give them a fair shake and see how much better or worse I felt, just so longed as I didn’t drink or drug, it was worth the experiment. I’m glad I did.
It’s mind boggling how well Celexa works in combating my constant headaches. I mean it just doesn’t make sense it’s so effective. The first week or two was weird as I was adjusting but after I got over the hump, I mean to tell you the brain fog headaches I would rate as an 8 or so, fell down to around a 2, and the frequency of around 66% of the time or 2/3rds of the time walking around trying to function in pain has been reduced to around 1/10th of the time. They also gave me Prodrin to combat the migraines, the other kind of headache that actually significantly went away when I quit smoking 2 years ago, and it’s basically caffeine and a ton of Tylenol, but that too does the trick on that particular kind of headache. I am just so grateful I held out and waited, and found something that finally worked. I will give this another 90 days or so, or maybe even after that explore other ones to see which one I function the most highly on, but this is like a minor miracle to me, because I was suffering for so long, in so much frustration and pain, and I thought it would never end. I still don’t understand it. Could it be I was so depressed, or so chemically imbalanced it actually caused physical pain to my brain. I mean that looks like the case but seems far fetched and unlikely, however, I am not a chemist, a doctor or even educated about such things. All I know is it killed my headaches, made my life functional again and I am grateful.
I was written too by someone recently stated they had to go back on oxys because of their post interferon pain, and let me tell you man, I can relate. I was an opiate addict for a long time, and I write about that part of my life significantly in my book Hippopotamus Sea, however, I am not going back to that shit, ever again. Not saying I haven’t been tempted over the last 3.5 years though, I thought about it at least once a week for sure. It just isn’t an option for me anymore, I’d sooner eat a bullet. Just like any drug, I need more and more, for less and less effect, and it’s what caused all this bullshit to begin with. I’m not ever going back to that, and if you’re suffering I beg of you to quit the opiates and try Celexa, for some reason it really helped me with my post interferon symptoms. Opiates and drinking, relapse in general is not a viable option, period the end. Other than catastrophic surgery and taking the meds with sponsor supervision, we with the disease of addiction can not flirt with pain meds or drugs effectively, and even with the Celexa, I was in constant contact with my sponsor and letting him know exactly what I was trying, and he was aware of every decision I was making. Accountability is key in sobriety, and no matter the pain, there is no excuse to going back to opiates, drinking or any kind of narcotic. With us to use or drink is to die.
That being said, I do still feel a bit anxious from time to time on Celexa which makes me want to try Lexapro because I hear that it has an anti anxiety portion, and now my mind is much more open about the capabilities of these meds, whereas before I thought it was a block to your higher power, and the sunlight of the spirit, now I’m glad my headaches are gone regardless. Actually the Doctor had suggested Lexapro, but they didn’t have it in generic, and therefore the insurance company changed my prescription, or rather made me call and get the Doctor to change the prescription, which in itself is news worthy. Who the fuck gives the insurance company of none doctors the ability and power to change my medications, solely based on cost. I mean, it’s really an outrage. They say Lexapro will have a generic within the year though, so I’ll just continue on Celexa, record the symptoms, and then compare once I switch over later on.
I am still glad I found a baseline before using them, but I mean, Post Interferon, meetings and step work just wasn’t killing the headaches like it killed the urge to drink early on for me. Everything happens for a reason I suppose.
– Jared Bryan Smith
JB Smiths Blog - Author @ books4free.com 
Jared,
Interesting post, and the main reason why, 12 years post-diagnosis, I cannot seem to commit to rx despite advancing disease progression and a viral load of 27.5 million last check up.
New generation of tx look promising but time is running short.
You might find the following Commentary piece of interest. Looking for a publisher. I floated a slightly different version out a few weeks back and it clearly had an impact on HCV stakeholders.The Boston Globe appears uninterested – too illiberal for it. Got any ideas? Find me a publisher with a state or national readership and I’ll give you a cut of any payment received…
TC
Hepatitis C: The Censored Epidemic
By Peter E. Fisher
News that rock and roll hall of famer Greg Allman had a liver transplant in 2010 due to hepatitis C virus (HCV) related liver cancer came as little surprise to some of us baby boomers who came of age in the late 60’s and early 70’s. Allman joins a long list of gifted musicians with HCV and a history of illicit drug use – the principal source of transmission in the US – including David Crosby (CSN&Y), John Philips (Mamas and the Papas), Phil Lesh (Grateful Dead) – all liver transplant patients – as well as Natalie Cole, Freddy Fender, Dusty Hill (ZZ Top), Chuck Negron (Three Dog Night), and Steve Tyler (Aerosmith and American Idol judge), among too many others.
Unlike HIV/AIDS, the public rarely hears about the nation’s largest and now most deadly, blood borne disease unless it is in the context of celebrity diagnosis or death, and then only in passing. Patient advocates shuddered when Pamela Anderson announced she was dying of HCV and blamed her ex, Tommy Lee, for infecting her. It appears neither is likely. In a June, 2011CNN interview, Allman, who, along with Natalie Cole, partnered with the pharmaceutical giant MERCK and the American Liver Foundation to raise awareness about HCV and fight the stigma associated with it, acknowledged that he partied hard in the past, though left some wiggle room by stating “They think I might have got it from an old tattoo”. A July 27 benefit concert featuring the Allman Brothers, with a bevy of special guest stars including Lesh, Crosby and Cole, raised over a quarter of a million dollars.
Hepatitis C is a stealth virus that can take decades before symptoms develop, attacking the liver and taxing the immune system. It is the major cause of liver cancer and transplants. Baby boomers account for 71% of all cases. While treatment response rates have improved, most people living with HCV, an estimated 5 million Americans, don’t know they have it, and some patients are not good candidates because of pre-existing health conditions and treatment toxicity. Legendary music producer Chet Helms died after having a stroke while undergoing the interferon and ribavirin-based treatment. Anthony Kiedis of the Red Hot Chili Peppers claimed he cured his infection through controversial ozone therapy, while Keith Richards of the Rolling Stones said his natural immune system cured it “… by just being me.”
Then, on Nov. 8, the Centers for Disease Control and Prevention (CDC) dropped a bomb that few heard: According to their latest research, US death rates for HCV had eclipsed those of HIV/AIDS – by 2007. HCV deaths continue to climb while AIDS deaths decline. The five year delay in the announcement can be attributed, in part, to grossly inadequate CDC/HCV surveillance, but it fueled suspicion among some HCV advocates that it was politically motivated, and bought the AIDS lobby time to further consolidate their control over the infectious disease agenda and funding. The national media ignored the findings.
Why HCV remains a silent epidemic is a matter of growing controversy. By the time the virus was identified in 1989, the CDC was preoccupied with HIV. By the early 2000’s, with grassroots HCV activists raising troubling questions about the politicization of infectious disease (identity politics and AIDS advocacy are inextricably intertwined…), and HCV emerging as the principal cause of death among those HCV/HIV co-infected , AIDS lobbyists began to act. With the support of the CDC, and funding from the pharmaceutical industry, the National Viral Hepatitis Roundtable (NVHR) was formed in 2003 to lobby for viral hepatitis legislation. The AIDS lobby, which could no longer keep HCV at arm’s length, simply took it over. HCV patient advocates cannot raise critical issues about disparities in disease mortality, morbidity, and funding because the people benefitting by it set the agenda and run the meetings. This scenario is played out endlessly at the state and national level with little or no public scrutiny or accountability. HCV is not a silent epidemic: It is a censored one.
After enduring intense criticism under the leadership of Executive Director Martha Saly, the NVHR was absorbed by The Task Force for Global Health in late 2010.The pharmaceutical industry’s hope of turning HCV treatment into a cash cow using the AIDS pipeline was dashed. Politicians do not want to fund another AIDS epidemic, and a powerful array of entrenched special interests fear change.
Not all HCV patient activists, a more heterogeneous population than their HIV counterparts, are happy with the arrangement. Former North American representative to the World Hepatitis Alliance (WHA) and NVHR Chair, Chris Taylor, who is the Viral Hepatitis Coordinator for the National Alliance of State and Territorial AIDS Directors, came under fire from grassroots HCV activists when he declined to respond to requests to clarify his disease and organizational status. In 2010, I coordinated a non-binding petition drive by the Hepatitis C Oversight Partnership (HepCOP), a coalition of HCV patient-based organizations critical of infectious disease policy and priorities, requesting his resignation from the WHA. Eligibility guidelines required candidates to be living with hepatitis and represent a non-governmental organization whose primary focus was viral hepatitis (they were subsequently changed to loosen restrictions). Taylor, whose initial election was engineered by Sue Simon, a New Jersey-based HCV patient advocate with close ties to pharmaceutical interests (her husband is the NVHR Board Treasurer), is believed to be living with HIV but not hepatitis, and works for a governmental agency whose primary focus is AIDS. Taylor declined to resign, but the petition drew international support from HCV activists and he did not seek re-election. Viral hepatitis advocacy leadership remains dominated by gay, white AIDS lobbyists and pharmaceutical interests.
A bad situation was made worse when the Obama administration increased the viral hepatitis budget $1.8 million, to $17 million (vs. $515.4 million for HIV…) in 2010, but stipulated that the funding go to AIDS organizations for outreach to gay men. HCV sexual transmission is rare, and injection drug use accounts for a vast majority of HCV/HIV co-infection. Both the CDC and Sen. John Kerry, who is co-sponsoring legislation to fund a long overdue national viral hepatitis strategy, declined to comment on the merit of the stipulation. This was not a science-based decision. Obama might be forgiven for fence-sitting on the issue of gay marriage, but he runs the risk of losing political support from five million disenfranchised people living with HCV, not to mention giving ammunition to conservatives and other critics of national public health policy showing him out of step with the changing face of infectious disease.
Ironically, AIDS lobbyists have unexpected support from some vocal, conservative critics within the HCV patient community, including members of HepCOP, who believe that focusing on drug use and users in HCV research and prevention hampers the development of funding and programs for patients with more socially acceptable modes of disease transmission. These lobbyists, who do a less than stellar job in addressing the stigma associated with drug use and HIV (Obama recently signed a bill reinstating the ban on federal funding for needle exchange programs), are betting that a marginalized and self-stigmatizing HCV patient community strengthens their position. The politics of infectious disease advocacy has turned ugly.
Our nation should be proud of its accomplishments in the war on AIDS, both here and abroad, but that success did not come without a high price. We need to remain vigilant, but can no longer morally or ethically justify a costly and single-minded obsession with ending one epidemic at the expense of beginning a response to another.
The author is founder of the Massachusetts Hepatitis Patient Empowerment Project, former member of the New Haven, Ct. Mayor’s Task Force on AIDS and Needle Exchange Program Advisory Committee, and represented the FAIR Foundation (Fair Allocations in Research) at the NVHR from 2005 until 2010. He has a BS in Public Health and resides in Wendell, Massachusetts.
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A lot of information there, not much of it is new to my blog though, take a look, I’ve been covering this for a while. Still a lot there worth publishing, however, I don’t know of how to get publishers attention, otherwise I wouldn’t have published my entire story on http://www.books4free.com … I’d be happy to discuss publishing your work there though. I would recommend with a viral load that high you get to TX ASAP. No amount of discomfort makes me regret being Hep C free. And I’m still glad I did it before teleprevir, even though I had to endure twice as long at higher dosages and continue to suffer, I’m hep c free and have been 3.5 years. I would implore you to begin treatment now, rather than later, no matter what. Good luck and Godspeed.
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