Day 33: Pick a card, any card.

Throughout these past 2 years doctors and family members alike have told me that I need to be my own advocate. Research everything and make sure you are comfortable with whatever treatments you choose.  Health Partners (my insurance company) promotes having an active role in your own healthcare as well as Fairview (my provider network). It should then, come as no surprise that I am-indeed- my biggest advocate.

As I mentioned before, I am a Google-er.  I feel the need to fully understand any medication, test or procedure I try for any reason. I like to know the side effects, both common and uncommon as well as what can be done to counteract them should they be unbearable. I have been told by doctors on several occasions that I am extremely self aware and concise.

As I mentioned in my previous post, I have been offered anti-depressants and anti-convulsants to help with my pain. Both of which I have declined. I have been offered these medications in lieu of any addition form of narcotic pain medication due to the side effects that come along with them.  The most worrisome of course being physical dependency or addiction. This is absolutely understandable, as I have known people with addictions to narcotics and it is a scary place. A place I don’t ever want to be.

But the reality of my situation is this: I don’t have seizures, so the idea of taking an anti-seizure medication is a bit scary. I am not depressed, so taking an anti-depressant is also a bit worrisome. (This feels a little bit like 1+1=cat to me) I do have pain, so taking a medication specifically designed for pain makes sense to me.

The reality of this is also that I am not a doctor, and I do not know everything. So, in true me fashion, I began to really dig into these medications and weigh my options accordingly. What I have found is interesting, and a bit validating.

Neurontin is an anti-seizure medication given to epileptics, it is also used in the treatment of nueropathic pain. It is proven to be very effective in most patients.  However, just like the demon narcotic, your body creates a tolerance for it and patients find themselves taking upwards of 1000mg daily just to manage their pain. *Max dose is 4000mg a day.  Along with the tolerance issue, the side effects include:

*Dizziness, vertigo

*Fatigue and or tiredness

*Unsteadiness or incoordination

*Abnormal thinking, anxiety, hostility, confusion, amnesia,

*Depression, suicidal thoughts, mood changes

If that isn’t enough fun for you, it also causes digestive distress, dry mouth (which leads to dental problems) it can make your more susceptible to viral infections, chronic bronchitis and headaches. Additionally, I have yet to find a single instance of a person taking this medication that is not also on Valium, Methadone, Tramadol, Oxycodone, Lidacaine or some other tranquilizer or narcotic.

Cymbalta is an anti-depressant that is also used off-label to treat nueropathic pain. The side effects of using Cymbalta are much like those of using Neurontin with the added bonus of weight gain and loss of sexual desire or ability to orgasm. I have also not been able to find a single person taking this medication without also using a narcotic daily for pain.

These medications -like their nemesis the narcotic- require the patient to be weaned off slowly to avoid withdrawal symptoms.  Many patients report having issues getting back to ‘normal’ for months, if not years after discontinuing use.

I think at this point you probably understand my hesitancy to start using a medication like the ones listed above.  However, my current medication plan is not working as well as we would like so we are looking for something new to try.  Currently I am taking ibuprofen (3 every 6-8 hours) and Percocet 5/325 as needed.  Typically I take 4 tabs a day. I have been taking the ibuprofen daily for the past 2 years, not to mention the occasional use before my PCS started.  The risks associated with ibuprofen are increased risk for heart attack or stroke, dizziness, constipation, and chronic use (chronic in the medical community is something that lasts longer than 6 months) promotes increased risk of stomach ulcers and bleeding.

Sounds safe yes?

Percocet is two parts; Acetaminophen 325mg and 5g Oxycodone per pill.  I take 2 at a time so that is 700 mg Acetaminophen and 10mg Oxycodone per dose. Now, the side effects of Acetaminophen are low, however it can cause severe damage to your liver and kidneys because it builds up in them over time. This can promote liver or kidney failure with chronic use. Yep- I use it chronically.

Oxycodone is an opiate used to treat chronic pain that is moderate to severe. The side effects of using Oxycodone chronically are as follows; dependency, constipation, dry mouth, potential for elevated liver enzymes, respiratory depression (if overdosed), sleepiness, dizziness, etc.

The most dangerous side effect of long term Percocet use however, comes form the Acetaminophen which is known for causing liver damage.

So, I think we can all agree that none of these options are walk in the park. They all come with their own baggage with long term use. Now, the thing to keep in mind is that I am not looking for something to take for the rest of my life. Medications will come and go, treatment options will be improved and new ones developed. Drugs will be reformulated and discontinued while new ones are being released for use. What I am looking for is a better way to manage my pain for now  and of all the options I have been given, I know what I am comfortable taking for now.

The problem I am having is this: it doesn’t seem, that for all my knowledge and self awareness that any of my desires seem to matter.  For as much as the medical community has pushed-no, forced– me to be my own advocate, I have no say over what I want to put into my own body. This, my friends, frustrates me to tears. I have done the research, considered the options, discussed the pros and cons with my support team and prayed with God for a direction, jumped through every hoop placed in front of me and still, I am at the mercy of the mighty Keepers of the Opiates themselves.

All of it is a crap shoot. Every option is like playing poker without seeing your own hand. It seems as though I am sitting in front of a magician chanting “Pick a card, any card.” but when I reach for the one I want he says “except that one.” If I am not allowed to pick the card that feels the best to me, how can I ever win?

2 thoughts on “Day 33: Pick a card, any card.

Add yours

  1. Yep, when it comes to medications…it really can be a crap shoot. They are technically all chemicals that are foreign to our bodies and thus carry a risk of side effect. Sucky thing for me right now is that my best choice at relief is a medication that is still brand name (no generic options yet), so therefore still very expensive. A lot of insurance companies won’t cover it until you have tried and failed other options first. So, other options here I come. The option I’m on right now is neurontin. I’m already on 600mg daily with no relief in sight and with a dose increase in the near future. The fatigue it gives me on top of my already built in fatigue is staggering. But I plow through because I have to play their “game”. But I’m hoping by the time I see the specialist, he’ll be able to give me the med that I feel will give me my best chance at relief.
    Ugh…the games we are all forced to play to find a way to just live without the pain that we don’t deserve to have.


  2. It is sad because after a while you do become suspicious of the pain management world. They instantly recommend Neurontin & Cymbalta for every pain condition out there and, like you, I’ve never met a person on just one of these meds. There must be money it is somewhere.


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