Shame and Chronic Pain: Sharing Some of My Worst Moments

cd74f09dd7b4a7be6a65c11106701757I’m hitting the wall–but I’ve been hitting the wall for some time now.

I have tried every preventative drug and treatment for migraines–except brain surgery. And I’m not even sure that’s a thing. And I’m definitely sure I wouldn’t do it, even if it was.

I had Botox injections for nine months.

Today my doctor’s nurse suggested that I sit in a dark room and put a cold compress on my neck.

Is nobody hearing the words coming out of my mouth for the last few months? Do you think that if an ice pack and some rain music made any sort of impact on my migraines that I would be taking shots in my face?

He’s suggested that I take torridol IV twice this week. It sort of helps for an hour, but then it wears off and I’m right back where I was before–except now I have even more medication in my system to deal with.

Does anyone like waking up in the middle of the night dry heaving from narcotics? No? Does that not turn you on? Does that not make it all so much easier to manage?

08a15a873c3a1714e6c083b37ecb096eAm I waving a giant RX script screaming, I’m an addict! Let me go into the oblivion!

The oblivion–it turns out–not such a party. Being unconscious or mostly unconscious for your entire life is not the “escape” the medical world makes it out to be.

The dream isn’t just to not feel pain when it happens. The dream is to wake up every morning without the pressure building throughout the day and dreading and fearing having to take a rescue medication and trying to plan my life around how out of it I’ll be.

The dream is to be able to sit in the dark for an hour with an ice pack and then go out to dinner.

The reality is that I get into out of control cycles of these migraines, under and then over medicate with medications that don’t do much to solve the actual pressure of a migraine–and just knock me out (which is the kind of deathless death you need at that point.) The 8c9b720fadc449a09a00d3553380fcb3reality is that my medical team who is in place to support me and to be continuously looking for ways to up my quality of life–are frustrated and have no answers for me, and (if I can take a wild guess here) probably think I’m a drug addict which makes it humiliating and shameful to reach out when I need help.

How do they not understand that if they handed me a banana and said, “this was all you were missing. It won’t give you any opiate feeling,” that I would eat the banana and go back to my column that’s on deadline and planning my fourth of July BBQ?

I’m still going to do those things. I’m just doing them under what feels like an anvil perched on my head.

I can’t heap all the blame on my doctors. You can have all the empathy for your patients in the world–but how frustrating must it be to be doing everything you’re supposed to do and still not having acceptable results? And I know the mess that is the American medical system and pain management fraud.  I protect my own ass when I work with clients too.

Inevitably it all gets personal. Inevitably, you ram right into the suspicion that you are not one of those patients who is really feeling chronic pain. You sit there in front of your pain f548c4ac4c2bc2de25f5ec5867dab55amedicine and think: I shouldn’t. I should just try to get through it without anything. And inevitability–enough of these moments will just make the situation worse.

My pain management doctor always told me to nip it in the bud. Migraines are not something you wait around for to improve. And since I discovered that there was such a thing as pain management, I’ll admit that I’ve felt hugely relieved to not have to suffer through many unnecessary episodes.

You can’t live in rescue mode forever though, and we are so far outside the realm of regular treatments that I don’t know if a tylenol would even dull the pain of a hangnail.

I’m open to suggestions on the next step. I’m doing my research and I’m praying I’ve missed something along the way.

Here’s a small list of some of the things I’ve tried: all basic OTC pain meds like ibuprofen800mg, topomax, immitrex, fioricet, soma, excedrin, tylenol+caffeine, Sumatriptan, Zipsoar, vicodin, torridol, percocet, Botox, beta blockers, flexiral. (The narcotics technically stop the pain, because they knock me out–but when I wake up, it’s generally right back at it again.) I also take a big of fluid IV daily. I’ve tried acupuncture, diet changes, cranial sacral therapy, massage, and (sometimes it actually helps–) chiropractic adjustments. Is there really nothing left?

Being shamed about pain medication is a constant sore spot for me. It dredges up some of my absolute worst fears about myself and how people might see me. But I think it’s important to share even my worst moments if I’m going to show you my best ones. I’m not always sure what the answer is to these situations, except to let you know that you aren’t alone. And even those who like to consider themselves “well-managed” or even just “somewhat in control of their symptoms” have dark moments too.

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Have you ever been “Pain-Shamed” by your doctor before? What was your reaction?

 

Comments

comments

  • Elizabeth B

    I’ve definitely been looked at like I couldn’t possibly be in the amount of pain I say I am and I just want drugs… but yeah, I hate them too. I just want you to make my head stop exploding (or whatever else feels like it’s exploding) so I can get on with things.
    The second I feel one of my migraines coming on (like, “okay, might have one in an hour or two”) I have to take Excedrin Extra Strength (or, at a minimum, Tylenol). If I miss the very beginning, I just have to lay in bed and wait for it to pass… which can take awhile. If I don’t take the medicine until I actually have a migraine, I’m screwed. None of my docs want to give me pain meds, and I don’t want to ask for them because I don’t want the judgement.
    I have noticed that I can make my migraines a little less severe, sometimes, if I drink a warm (room temp) Gatorade really fast, one of the big ones. It hurts my stomach, but it calms my head down a bit. Then I have to take nausea meds because my migraines come with nausea so the nausea from the Gatorade makes it worse :-/

    Good luck!!!

  • Katie

    I don’t have any suggestions, unfortunately, but just wanted to thank you for your honesty. Such a relatable post.

  • Jan

    Hi there, As a fellow Dysautonomiac I have enjoyed your blog and appreciate you taking the time to write for all of us even though you are suffering. I felt deeply for you as I read and understood everything that comes with being a migraine sufferer. I cringed at the thought of leaving a message at first because I can see how it can be frustrating when people throw a million ideas at you. But I decided to go ahead in case there is a chance that what helped me may help you. I saw what I take is not on the list of what you tried. I still suffer continuously with migraines and have most of my life ( I’m realizing in my case possible spine and neck issues from EDS might be at play. ) But quite a few years ago my doctor gave me sample of a migraine med called Rizatriptan; I take 10mg ( Name brand is called Maxalt I believe. ) I now could not live without this drug. It doesn’t’ totally eliminate them but makes them SO much more tolerable. And it really relieves that awful pressure feeling that drives me around the bend! Once I looked into how this med ( not a narcotic which was a plus) works by constricting the blood vessels that are probably dilated by the migraine, I realized as a POTS patient why it probably helps me so much. So many of my problems are caused by dilated veins so something that constricts them makes sense to me. It does come with risks, especially with the heart, I have to take make sure to take it exactly as directed. I was prescribed this before my Dysautonomia and Pots diagnosis. To be honest I may have never tried it if I had known because I would have been concerned about the side affects because of my Pots. But because I had already been taking it and that it is the only thing that has ever come close to helping, I take the risk and try to be mindful of how my body is doing when I take it. So if you are thinking of this med please research it yourself and talk with your doctor and pharmacist and make sure it is something that is right for you. It is also expensive unfortunately. I am in Canada and my husbands plan covers most of it thankfully, I still pay a fee but because it helps me so much its worth it for me. They can come in a wafer form that dissolves in the mouth which helps because I have gastroparesis ( sorry not sure if it comes in a form that can be done through Iv. Hospital here said no, but not sure if that would be different for you.  A little tip if you try it. When I first take it I try to catch it as early as I can and I lay in a dark room if possible to let it do its thing. I found it works better for me when I do that. Really sorry this is sooo long!! Condensing what I am saying is not a talent that I possess lol. I really hope this can be of some help. I will be praying that you can find some form of relief and soon! Take care, Jan 🙂

  • Carri

    I have this dream that I go to the doctor with the pain that I am having and there is a pain simulator that he walks in to. I press the body parts and their are adjectives next to it .
    Hot snakes twisting organs into knots.
    Metal anvils being clanged against my head
    Veins in my legs having hard boiled eggs fresh off the stove boiling being pushed through veins slowly.
    And the physician gets to sit there for 15 minutes un medicated.
    When she/he comes out you can then discuss treatment .

  • Hi. I read your blog. I have been where you are with the migraines, chronic, for weeks almost nonstop ones too. They started at age 10, then got really worse at age 26I am older now-55-in menopause which helps as well as my fibromyalgia meds. What helped me was preventative beta blockers, pain killers, then biofeedback with a 3 month relaxation program then psychotherapy. I have several chronic illnesses with chronic pain including psoriatic arthritis and degenerative disc disease. I always felt better knowing my doc, a neuro, believed me. I also had pain killers and a nearby PCP who would give me a shot of demerol if needed.
    I definitely would have tried botox too if it was available then.. Recently I heard about implanted neurostimulators for migraines. This really intrigued me. You get to test it on a non-implant on a temp trial basis, then if it works it gets implanted. Noone can see it in your forehead. The name of the place is reedmigraine.com. Maybe it can help. I would have tried it.
    I also tried and used an NTI-tss from Chairsidesplint.com, and it worked much better than other bite plates for grinding teeth that definitely contributed. It was very small and I wore it on my top front teeth. It helped interrupt the pain in my jaw that went to the back of my head down my neck to my shoulder that sometimes would help trigger the headaches or linger after a headache. It helped a lot too.
    I wish you well. Hope something helps soon.
    Anne Arato

  • lv

    Has anyone who suffers from migraines trieD hyperbarichamber treatment, our another one where they use magnets to help. My friend had the magnet one done. She went from suffering everyday to having one migraine about once our twice a month.

  • Molly

    I really think an atlas orthogonal treatment might help at least make the other therapies more effective.
    Here’s a video on what it is:
    https://m.youtube.com/watch?v=O9wziwsu6QQ

    I know it seems a little bonkers but it’s made a huge difference for me and I have significantly less headache/migraine days and less tmj and myofacial pain.
    Hope you find something that helps and you’re right they need to get on board, every BODY is different.

    Ps. I believe you! I know that doesn’t mean much but chronic disease is a little less overwhelming when people believe you.

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