My Own Private Hardhome

I regularly get inquiries about my health, especially since I haven’t posted an update since last August. I figure my latest correspondence with my headache specialist should suffice:

Hello Dr. Liu:

I am in agonizing pain. It seems that the second round of Botox has yet to have helped me at all. As of right now, I am hurting a great deal and have taken two sumatriptan and have taken all fourteen of my nightly pills (exedrin/ibuprofen, olanzapine, topamax, indomethacin, gabapentin, verapamil, prilosec, buproprion) and my head still hurts really bad.

Dr. David’s office says that my insurance will not cover the neurostimulator they wanted to consider, and that they have referred me back to your office for further care/treatment. I was desperate and asked how much it would cost me if I wanted to pay myself ($100,000)… I can’t afford that much.

I need to know if there are other providers that could help me out with more permanent/advanced options that might be covered because I’m in a living hell. The meds I’m on make me drowsy and stupid, they mess with my stomach and they probably aren’t good for my organs (at least not at the doses I’m taking). I haven’t slept the night through in almost a week because of head pain, it’s making me crazy. I’m terrified of trying to go to sleep tonight.

Please help me.

To put it simply… life with 100% never-ending excruciating head pain is so … so monstrously ruinous, it destroys all quality of life.

29 thoughts on “My Own Private Hardhome

  1. Garaygos

    Hold on, man. Hold on. My best wishes for a recovery. And thank you for the many enjoyable hours I spent reading through your material, it’s really inspiring. Cheers from Italy.

    Reply
  2. Varys' swimsuit area

    So sorry to hear this. I made a flippant comment about an “uncantuse” coming back from surgery that I’ve regretted since I wrote it. Within the same week of your surgery I sustained two concussions and was sent down a similar path. Nowhere near as debilitating as yours sounds but still excruciatingly humbling and awful. I was plodding through the standard medical system with little success. CT scans, MRIs, drug prescriptions, etc and none was providing relief. Acupuncture provided temporary help but I felt lost. I was put in touch with this guy http://northernintegratedhealth.com/index.php/about-us/staff.html?view=employee&id=6 and his help has been invaluable. He would be more than willing to have a conversation with you if you feel up to it.
    I know I’m in Minnesota and not near where you’re treatment options are, but at least in my case even talking to the right person was an immense help. I know he specifies concussion as his primary focus, but he literally turned my world around. If he can’t help I know he would do everything he could to put you in touch with someone who could at least attempt to approach the issues you’re dealing with. If you do make contact, tell him Will from Orono told you to get in touch.
    Again, so sorry to hear what’s happening in your world. I hope you can find something resembling clear headspace. I’m not out of the woods, but I’m heading that way.
    Good luck and gods speed you to a recovery path,

    Will from Orono, Mn

    Reply
  3. Preston Jacobs

    If the insurance route fails, I think you should set up an account on http://www.giveforward.com to crowdfund your neurostimulator. And I can then make a video to send donations your way. I know this route is a little public, but it can be done and I’m happy to help.
    -Preston

    Reply
    1. cantuse Post author

      Thanks for the offer, but the problem is that any adjustments, etc would also not be covered. I’m in the middle of moving and considered rolling the cost into my new mortgage but its just not worth it considering the unforeseeable (and likely costly) additional procedures down the road. I just have to wait it out I think.

      Reply
  4. Ted Bloomquist

    You’ve probably had a bellyful of what might seem like platitudes, but here’s another: Don’t hesitate to give yourself whatever gifts of time and rest you need to feel better, and know that you’re surrounded by caring thoughts/prayers/wishes. Rest easy and get well. You bring light and joy to the days of people like me – people you haven’t even met! You’ve put a lot of love and care out into the world, and I hope it finds its way back to you. So again, please rest up. I’m hoping and praying there’s a breakthrough soon.

    Sincerely,

    Ted Bloomquist

    Reply
  5. Lars

    Please know that although you head is being a royal pain in the ass right now, your brain and the amazing ideas it has created have been a source of wonder and joy for me. I hope this is a small encouragement in this difficult time. All my best.

    Reply
  6. somniture

    I’m amazed that you can compose a message on Zyprexa + Topamax + Neurontin + Wellbutrin, particularly the first two. Wifey was reduced to tears trying to form complete sentences on Topamax, and I totaled a Honda Accord by running into a lamp post in the middle of a parking lot on Zyprexa (that stuff is terrible and I don’t know why they continue to use it outside of psychiatric emergencies).

    Reply
    1. cantuse Post author

      Yeah, they are pretty potent drugs. For a while I had to stop taking my NSAIDs because they were messing my stomach up. Unfortunately this meant my pain went through the roof. The only solution for the moment was to skyrocket my dosage for Topamax and Zyprexa. I was so high I couldn’t remove a baby car seat from our Volvo. I mean, I mentally *knew* that I could do it, but for some reason the knowledge of how to remove a car seat was locked away. It was the most ridiculously stupid thing I’ve ever experienced.

      I’ve tried tapering and quitting both drugs but unfortunately my head pain just does not go away. My doctor and I are at a complete loss as to what is going on.

      Reply
      1. somniture

        There are two specialist headache centers in the U.S. that the neurologists (headache specialist, general, and epileptologist) at Mayo Clinic recommended for my wife: Michigan Headache & Neurological Institute (MHNI) and the Headache Center at Thomas Jefferson University in Philadelphia. We’re going to MHNI next month.

        If they’ve eliminated MOH as a major contributor, they might be worth looking into. It’s not just analgesics. The Imitrex is notorious for it. We record every use in Google Calendar to make sure she doesn’t exceed two per week, because when she starts getting them, the only thing that can stop them is an infusion of Reglan + Toradol + a steroid, and that can really only be used once a year without risking aseptic bone necrosis.

      2. cantuse Post author

        When I use Zyprexa regularly I only rarely need Imitrex. The moment I try to stop using Zyprexa my head pain becomes severe and I start having 1-2 days a week where I need the Imitrex. I really try to avoid MOH headaches. Right now my problems are stemming from long use of extremely high doses of NSAIDS: 300mg of Indomethacin a day coupled with occasional Exedrin/Ibuprofen for bad days. I’ve been dealing with the gastrointestinal side effects of NSAID overuse, but there’s nothing I can really do because the moment I stop using the NSAIDs, the pain becomes so severe I can’t even bear move from the couch, let alone write on a computer. It’s a tough choice, but I’m the sole earner for the family so I gotta do what I gotta do right now.

  7. Lady Dyanna

    I just wanted to let you know that there are still many people out there thinking of you and discussing your theories every day. Hopefully each day brings you closer to a solution that is able to give you at least some version of your life back to you that allows you to do and enjoy the things you love. As someone that suffers from chronic illness themselves, I understand how frustrating it can feel to not be able to do the things that you like and are accustomed to doing.

    I assist with running a small ASOIAF Forum, http://thelasthearth.com We have been discussing several of your theories as of late and several of our members have requested us to reach out to you. I understand that you are still going through a difficult time, but if you could ever use the distraction, or are looking for someone to chat with, we would be honored to have you stop by.

    Best wishes!

    Reply
  8. Bryan

    Hope your feeling better. I’m sure everyone here will agree that your work is consistently of a higher quality than any other asoiaf writer out there, and believe me I’ve read them all.

    My reason for this reply is bc i think i might have figured out the meaning of Jon’s crypt dreams, and since it was your manifesto that helped me formulate my idea, and bc i respect your opinion, there is no better person /community than yours.

    I literally just thought this so i haven’t had a chance to look for evidence in the text, but i will soon, and i expect to find it. So here goes :one of your essays, don’t remember which off hand, convinced me that you’re correct that Jon’s dream about the dead climbing the wall, green boys/old men actually refers to Ramsay being abandoned at WF. What if the same is true about another recurring dream Jon has? Could Jon’s nightmare about the crypts, not being a Stark, and being terrified that something evil is down there also apply to Ramsey? You’ve all but proven that Ramsey will be trapped there by Mance, and Ramsey is no Stark but it’s the last part that got me thinking. The network of underground tunnels has long since been one of the more likely ways the Others will cross the wall so what’s to say that these tunnels don’t lead to the lowest levels of the crypt. If the dreams are about Ramsey then we may see Others south of the wall for the first time.
    Now I’m going to look for clues that are buried in the text and when i find them I’ll post details. Any thoughts you have would be great even if they disprove my idea. Again I hope you feel better soon and you’ll be in my thoughts and prayers!

    Reply
  9. Bryan

    Hope your feeling better. I’m sure everyone here will agree that your work is consistently of a higher quality than any other asoiaf writer out there, and believe me I’ve read them all.

    My reason for this reply is bc i think i might have figured out the meaning of Jon’s crypt dreams, and since it was your manifesto that helped me formulate my idea, and bc i respect your opinion, there is no better person /community than yours.

    I literally just thought this so i haven’t had a chance to look for evidence in the text, but i will soon, and i expect to find it. So here goes :one of your essays, don’t remember which off hand, convinced me that you’re correct that Jon’s dream about the dead climbing the wall, green boys/old men actually refers to Ramsay being abandoned at WF. What if the same is true about another recurring dream Jon has? Could Jon’s nightmare about the crypts, not being a Stark, and being terrified that something evil is down there also apply to Ramsey? You’ve all but proven that Ramsey will be trapped there by Mance, and Ramsey is no Stark but it’s the last part that got me thinking. The network of underground tunnels has long since been one of the more likely ways the Others will cross the wall so what’s to say that these tunnels don’t lead to the lowest levels of the crypt. If the dreams are about Ramsey then we may see Others south of the wall for the first time.
    Now I’m going to look for clues that are buried in the text and when i find them I’ll post details. Any thoughts you have would be great even if they disprove my idea. Again I hope you feel better soon and you’ll be in my thoughts and prayers!!

    Reply
  10. Scott

    This past spring I was put on Vimovo, a strong NSAID with a proton pump inhibitor (to protect the stomach). If you need to take an NSAID, it might be a better option for you if others are bothering your stomach. Hope you are feeling better.

    Reply
  11. Rachele

    I have suffered with chronic pain and headaches for over 20 years, and have been on every med you could think of. I found that I would get used to them even though the docs said no. So every year I change, right now it’s topomax and morphine with some creams and prescription antiflamatories. Last year lyrica and opana with other meds, before that oxycotin and topmax I also used amitriptyline which helped and some antidepressants. I hope that maybe changing your meds may help a little. I know what you mean about not being able to think on some of these meds. When I first started taking lyrica I was taking it every other day because I couldn’t stay awake even if I took it at night. Finally my body got used to it and I was not sleeping all day, so the doc raised my dose. It wasn’t bad because I was still taking it every other day, but when he insisted I start taking it daily. OMG I thought I had early onset Alzheimer’s, I would be driving and not know how to get to my house, make a phone call and not know who I called. If I didn’t get the side effects of my legs swelling to twice there normal size, I would not have known. When I finally got the meds changed it was like I was coming out of the densest fog into the light. So hang in there, I know it’s frustrating I’ve lived it. But things will get better!!

    Reply
    1. cantuse Post author

      Funny you mention the leg swelling as I am dealing with that now on my verapamil at the moment. I accidentally was double dosing and didn’t realize it. My legs and feet are huge right now.

      Reply
  12. Rachele

    When my legs swelled I ended up with blisters all over me feet and I was in sneakers that I had worn forever. Told the doc and he got me of the meds right away, and as I said changed things so I day I took one med then switched the next day with the other. I was actually under medicating after with certain pills. I was able to handle the side effects better and i could think and remember things. But I got better results go figure! Some docs are real @ssholes about the way their patients are taking there treatment others just want to help you get better!!! Thank God my doc is that way. I hope you feel better soon!!!

    Reply
  13. Mary

    My husband’s left frontal sinus was caved in by an accident 20 years ago. He went via the circuitous insurance route & was referred to several Medical Doctors, Internal Medicine Doctors, Ear/Nose/Throat Specialists, & Pain Mgt Specialists. They tried many surgical procedures, injections, & pain meds over the years. Some were complete failures, some had very adverse side effects & were stopped, & some provided relief for a while.

    In 2010, he started treatment with the Veterans Administration here in San Antonio TX. He has received a wider & better range of treatment, injections, & various other meds/procedures & has had pain relief for long periods of time.

    The VA provided an electrical stimulator machine for home use, but it didn’t help at all. We still have it, & if you can find a doctor to calibrate its usage for your case, we will gladly mail it to you to see if it works for you.

    For about 5 years, he was on Hydrocodone along with various pain meds & antidepressants & had about 80-85% relief. For the past year, he receives a Ketamine infusion injection every 6 weeks & takes the following meds daily: Morphine, Topiramate, Duloxetine HCL, & Bupropion HCL. He also takes Trazodone HCL at bedtime for uninterrupted sleep & pain relief. He now has about 95% pain relief.

    Of course, everyone’s case is different, but you might ask your doctor about these meds to see if they can help you.

    Wishing you good luck & will keep you in my prayers.

    Mary

    Reply
  14. Bartek

    Hey, I am medical student and I’m now studying pharmacology, so I can only say that in treatment of migraine headaches very important case is proper dosage and frequency of painkillers. I hope that you know that taking NSAIDs or every other painkiller more frequent than 10 or 15 days (depending on a drug) a month can cause pain originating FROM TAKING THIS DRUG. If your MD recommended you taking all these drugs that way, that’s ok, you should listen to him, but if you changed the doses by yourself it could even strengthen your terrible pain. Maybe you should visit MD in order to treat headaches caused by overdosage of painkillers.
    Like Preston Jacobs, I’m probably wrong about half of this. I am only a student, so don’t take my council as a serious opinion of experienced physician. I’ll be praying for you and your family.
    I hope that you will get a relief & wish you all the best
    Bartek

    Reply
    1. cantuse Post author

      Sorry for being so late to both approve and reply to your comment… blame it on the holidays!

      As for my current treatment, the only NSAID I continue to take is indomethacin… because it is the only medication that seems to keep my head pain even moderately in check. With indomethacin my pain hovers about a 3 on a 10-point scale. Without it, my head pain is a constant 9-10, worse at nights.

      I’m somewhat blessed because I’ve been able to see the University of Washington’s Headache Clinic director, who has been using an extremely multimodal approach to try and break up my pain: a Cefaly device (like a TENS unit for your head), Boswellia, SPG block injections, biofeedback, you name it, she’s trying it. She specifically had me stop taking other NSAIDs and warned me about taking things like sumatriptan too often to avoid rebound headache and medication overuse headache. Thanks for the warning though!

      Reply

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