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Headache Camp #5- Advocating for Yourself

In mid-July I returned to Jefferson University Hospital in Philadelphia for my 5th Headache Camp. If you haven’t read any of my previous posts on what I’ve dubbed Headache Camp, it’s actually a five day in-patient stay where I get a continuous IV infusion of ketamine to break a bad cycle of migraines. A few other medications are added in as needed such as magnesium, Toradol or Ativan. While ketamine is a very powerful drug, I still experience breakthrough pain, which is why the meds above are on hand to make me more comfortable.

By now I’m a pro at this. I know what to expect, I know what I like to bring with me, I know I feel more comfortable having someone there with me (usually my mom or boyfriend), I know I need to take a walk around the floor at least once a day and to stretch with someone’s supervision so I don’t fall over. I know I’ll have to tell my story to a dozen people while being admitted because there are about four different departments that each play a role in my treatment while I’m there.

Importance of Listening to Your Body

Going to Headache Camp twice a year seems to be the most effective regimen in managing my migraines, along with regular Botox, nerve blocks, preventative meds and a mix of abortive medications. The ketamine infusion doesn’t stop my migraines, but it usually lowers the pain intensity by 2 or 3 levels and I become more productive for about 4-5 months.

My body was telling me back in March that it was time to go again as the daily pain levels were spiking more often and more intensely. However, life threw me a curveball. My boyfriend, Archer, was given the opportunity to transfer from DC to LA. He grew up in SoCal and we had been talking about making the move in the next 2-3 years, so we jumped on the opportunity. From the time he found out to the time he had to be in LA and working was less than six weeks. I had to push through the migraines and take the lead on the move, as he needed to focus on wrapping work up in DC and transitioning to a new team in LA. Archer came out to LA first and I finished up things in my beloved DC and joined him a month later. There was no time for me to be sick, but my head had been screaming at me to take a ketamine break.

Before I finally left for the West Coast, I saw my doctor at Jefferson and we made a date for me to come back to Headache Camp. By the time I got there, my pain was stuck at an average pain level of 7. That’s never a good place to be. The lower your pain level is going into the hospital, the more likely you will have a significant reduction by the time you leave. Seven is too high and my head decided to be stubborn, I left with a pain level of 5 or 6. Previous times, my pain had been in the 3-4 range, which is life changing for a few months.

Be Your Own Advocate

While this isn’t my first rodeo at Headache Camp, I observe something new every time I go, whether it’s about my behavior or about the process. This time, I recognized the importance of being your own advocate. I think sometimes we are intimidated by the doctors or nurses and don’t speak up.

  • The more educated you are about your treatment plan, the more times you ask “why,” and the more you listen to your gut, will lead you to being an informed patient that feels in control of your care.
  • If you tend to be a “hard stick” while putting an IV in, don’t be afraid to ask for a seasoned vet to put in the IV. There are always one or two nurses who have the magic touch. It will save you a lot of bruises and discomfort of multiple sticks that don’t work.
  • Be vocal about asking for the opinion of the other departments working on your case when you don’t understand your treatment plan or are in severe pain. On my second night, my pain level went through the roof. It was so bad, I curled into a ball in a chair and cried. The nurse gave me the standard Toradol and Ativan, but it wasn’t helping. I asked for the pain management team (who controls the ketamine) to come in. I wanted to know what my other options were. They were able to help reduce the pain more quickly.
  • We all think we’re pretty tough, having dealt with significant pain on a regular basis and pushing through it. But while in the hospital, you shouldn’t be in pain, that’s why you’re there. The doctor ordered magnesium in an hour long IV drip every 12 hours. It burned like hell. My veins were on fire and my arm started turning red and blotchy. I kept thinking I could suffer through for an hour, until I realized I had to go through this every 12 hours for the next few days. I told the nurse about my pain and after consulting the doctor, the magnesium was run with saline and the burning went away and the magnesium helped alleviate my head pain. Don’t be a hero, ask for help or tell someone when you’re in pain.
  • Lastly, I decided that I need to talk to my doctor about scheduling Headache Camp BEFORE my health is really bad. The better I am going into the hospital, the better I am coming out and having a chance at maintaining lower pain levels for a longer period of time.

This time around, my recovery has been a bit of a challenge. I just have to remember that my pain was really bad when I went into the hospital and moving across the country adds significant stress that only makes the pain worse. Don’t get me wrong, I LOVE living by the beach and I’m so excited for this new beginning. Now if my head would only cooperate so I could really get settled in.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Allison
    7 months ago

    Katie I just wanted to thank you for sharing your experiences in such a way that helps so many of us. I’ve been looking into ketamine and found this. It (and your other articles) helped me understand why my doctor is making me try lots of other things before hospitalization. I’m feeling desperate to end a 2 month cycle of really high pain levels. I’ve been refractory for 6 years and usually manage pretty well. Way beyond that now. Your sharing helps me understand that if I can get to a lower level going in and have a realistic expectation that it won’t eradicate all pain, I will respond better to treatment. He’s admitting me October 1, thankfully. Doing everything I have control of before then.

  • mikayla-rose
    1 year ago

    Hi! I have been reading all of your posts and they have been so helpful. I go for my consultation at Jefferson in April and I am very nervous. I am seeing Dr. Young and I was wondering how you liked him/ how he was? I’m just very nervous about the whole thing so any insight would be awesome!

  • Katie M. Golden moderator author
    1 year ago

    Hi mikayla-rose!
    I’m so glad that the “Headache Camp” series has helped you. Don’t be nervous. Br. Bill Young is an amazing person and truly cares. All docs have their quirks, but if you’re not following what he’s saying, just tell him. He wants to make sure you are comfortable.

    He’s actually written a few pieces for Migraine.com. These may help you get a sense of how devoted he is to patients.
    https://migraine.com/author/billyoung/

    I hope this helps and let us know how your appointment goes!
    Be well!
    -Katie
    Migraine.com Team

  • rynhill
    2 years ago

    Hey Katie, I’ve been following your blog, particularly because I was interested in your experience with ketamine. I’m about to go in for my 2nd Headache Camp a Jefferson. The first was lidocaine, but I’m doing ketamine this time, which is new for me. Thanks for sharing. I’m hopeful after reading that you have gotten some relief and I’ve found your tips helpful.

  • Katie M. Golden moderator author
    2 years ago

    Rynhill,
    Please let me know how it goes! And I’m more than happy to answer any questions you have. Thanks so much for supporting my new venture too!
    I really hope that the ketamine infusion will give you relief!
    -Katie

  • RachelRoo
    2 years ago

    Hi Katie! So sorry you moved away from my DC area because hearing about your experiences and options for places close to me was so helpful.

    One question I have, is the Jefferson Clinic the only place that would offer those Ketamine infusions? I’ve seen others farther off the map but I wondered if you’d had any while you were at GW or heard of any at Hopkins. I’d like to try this, or something to just break the cycle of popping pills to get through the work day (I’m still working, still teaching Pre-K) and hoping it will last for me.

    I’d like to consider a several day stay for infusions if it helps but with work don’t know if I can make the trek to Philly.

  • Katie M. Golden moderator author
    2 years ago

    RachelRoo,
    I come back to DC often for family and for doc appointments because I’m not fully integrated into the UCLA Headache Clinic.

    Jefferson is the only place in the US that does a 5-day in-patient continuous ketamine infusion. However, several pain management doctors will do ketamine infusions for a few hours at a time in their office.

    My doctor at Georgetown gave me the name of a pain medicine doctor that does one day ketamine infusions. I have not been to him so I can’t vouch for him. And I have no idea if he take insurance. But here’s his information:

    Dr. Mehul J. Desai
    International Spine, Pain & Performance Center
    2141 K St NW, Suite 600
    Washington, DC 20037

  • SandraLee
    2 years ago

    Hi Katie, What hell you’re going through. To cope with my migraines I stay home all the time but you can’t do that. I also take cold baths several times a day. They seem to reset my brain like rebooting your computer and are especially helpful during the prodromal phase.

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