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Official Study Results from Headache Camp.

Official Study Results from Headache Camp

I fondly refer to in-patient hospitalizations at Thomas Jefferson University Hospital in Philadelphia as “Headache Camp.” It makes it sound less scary and more like an experience that I will remember fondly for the rest of my days. Since mid-2013, I have been going to Headache Camp on average of twice a year. During my time at camp, I receive a continuous IV drip of ketamine in an effort to rest my brain, which is constantly firing off pain signals. Since becoming chronic in 2011, ketamine infusions have been the biggest factor in helping me to manage my pain.

To be honest, I probably get two or three questions a week via social media about my experience with ketamine. I’m happy to share my story and answer questions. I want others to explore their options and maybe find some relief. I think I’ve probably jammed up Jefferson’s schedule with the increasing number of people who have read my stories and decided they wanted to try ketamine for themselves.

Ketamine overview

If you’re not familiar with ketamine, it is a synthetic drug discovered in the 1970s and was used widely as an anesthetic for surgery. Veterinarians also use it as a horse tranquilizer. Special-K is one of the street names for ketamine. People have abused ketamine for decades. So why in the world would anyone in severe pain want to try this drug? We’re desperate to try anything and this seems to work.

The Headache Clinic at Jefferson Hospital offers the ONLY in-patient ketamine infusion for the treatment of chronic migraine. Pain management clinics may offer in-office infusions that last for 4-8 hours a day, which is repeated for several days in a row. The difference is that the patient takes a break and goes home every night. For anyone interested in ketamine, daily infusions are a good alternative.

New Study Results

Ketamine is not a widely used drug for the treatment of migraine, although it is being studied extensively for depression and PTSD. To be honest there haven’t been enough studies to show its efficacy for migraine. It’s also not entirely clear why ketamine provides relief. Since the Headache Clinic at Jefferson has the most experience in administering this drug, they published results in the Dec 2016 edition of Headache, the Journal of Head and Face Pain.[i]

The retroactive study examined the experiences of 77 patients who received ketamine treatments from Jan 20016 through Dec 2014. These patients were either diagnosed with chronic migraine or new daily persistent headache. Those who were chosen to receive ketamine infusions had failed traditional or more aggressive treatments in the past.

Upon admission, the average headache pain was determined to be 7.1 (on a 10-point scale) prior to receiving the ketamine infusion. Patients were then administered 1ml of ketamine per 1kg of their body weight for an average of five days. 71% of patients experienced at least a two-point decrease in head pain. The average head pain at the end of the infusion was 3.8 (on a 10-point scale). 27% reported that their pain level had remained at a lower level during their follow-up visit.

The analysis of these patients suggest that ketamine infusions could be a viable treatment option for those with chronic migraine and new daily persistent headache, however controlled trials are needed to explore treatment efficacy further.

Preparation for receiving a ketamine infusion

As I mentioned previously, I get asked questions quite often about my ketamine experience. Whether you’re receiving an in-patient infusion at Jefferson or getting multiple daily infusions in a pain specialist’s office, there are some key things that I think every patient AND their family needs to understand:

  1. Ketamine should become an option when aggressive treatments like Botox, nerve blocks, DHE infusions or stimulators have not worked.
  2. Everyone’s response will be different. Don’t set yourself up for failure by thinking this is the absolute cure for your migraine disease. Consider it a success if the treatment is able to knock your daily pain level down by two or three levels.
  3. This is a hallucinogenic drug. Go in with an open mind. You are in a safe space. You may close your eyes and see beautiful kaleidoscope patterns or have intense vivid dreams. Enjoy it!
  4. In my experience, with each ketamine infusion, my body responds more positively. My average pain level decreases for a longer period of time. I can’t promise this will be everyone’s experience. But if your first experience didn’t make a difference, the second or third infusion could eventually make a difference.
  5. Ketamine will mess with your emotions. I learned this the hard way. I typically feel very sleepy, but upbeat while on ketamine. It kind of feels like you’re drunk (in the best way). After several days, it can mess with your emotions or cause you to have weird thoughts. DON’T keep this to yourself. Tell the nurse right away. There are medications, such as Ativan, that can help to calm you down. Don’t struggle in silence.
  6. Stay away from social media. There will come a point when you absolutely don’t make any sense. I once emailed friends telling them that if they called me I could read their palm. That’s not how that works.
  7. Be prepared to need help when you go home. Your body has just gone through an extreme transition. Allow yourself time to heal. Don’t plan any strenuous activities for at least a week after your treatment.
  8. Lastly, keep a headache diary when you come home. At first you may not feel like anything has changed, but over time the effects could sneak up on you and your daily pain could improve. Keeping records will help you and your doctor to decide if ketamine therapy was worth it.

Finally having a study to reference on the effectiveness of ketamine in chronic migraine patients can open doors for additional studies and potentially more accessibility. Long term studies are still necessary to examine any side effects from years of use. If you have a ketamine story you want to share, please do!

[i] http://onlinelibrary.wiley.com/doi/10.1111/head.13013/abstract

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

  • kdmoore512
    2 years ago

    For these inpatient Ketamine infusions, does insurance normally pay for them? I’ve heard that the insurance companies don’t like to pay for the outpatient pain clinic infusions, but they do pay for inpatient. But that doesn’t make sense. Any knowledge in this area would be greatly appreciated!

  • Katie M. Golden moderator author
    2 years ago

    @Kdmoore – My first time trying to get admitted to Jefferson, it took about 6 months and multiple appeals to get it finally approved by my insurance company. I’ve switched insurance now at least twice and had it easily approved. It depends on your insurance company and probably how many other therapies you’ve tried. When I had to appeal, I think it was after I gathered medical records since I was a teenager and handed them over – then they finally said ok.

    I’ve since moved to the West Coast and I can’t find a ketamine clinic that takes insurance and no one but Jefferson does the inpatient ketamine for migraine. So I’m probably going to have to travel back at least once this year to Jefferson. They are still in my network- but I’ll have to pay more toward my deductible. It’s still cheaper than using a clinic for me.

    I hope that helps and I hope your head is being nice to you today!
    -Katie
    Migraine.com Team

  • beckyalison
    2 years ago

    I had my first appointment at Jefferson with Dr. Stephanie Nahas – she was wonderful. The whole staff was great. The long and short of it is that I’ve scheduled an in-patient for July 25th. Dr. Nahas told me I would have DHE and lidocaine. I’m so nervous and trying to plan all of the logistics of traveling (a LONG distance), what to bring, etc. Evidently they are going to call my insurance company to make sure it goes through insurance. Any suggestions on what to expect with this treatment? What should I bring with me?

  • Erin
    3 years ago

    My new Migraine Specialist isconsidering the Ketamine treatment for me. Right now we’re trying two new medications I’ve never taken. Unfortunately, the first one isn’t making any difference. I live in a very small rural town in Kansas. My specialist is in Kansas City. So far she hasn’t been able to find any place that does the Ketamine treatment. Going to the Jefferson Clinic probably won’t be an option. Getting on planes makes my migraines even worse, which are almost unbearable now. I’m afraid any good done there would be undone by a flight. My Dr. was wondering if I could get the name of a Dr. that does it, and any information about what is done, and maybe how to get it done somewhere closer than half way across the country. Thank you for any information you can provide. Thanks again.

  • Erin
    2 years ago

    Thank you very much Katie for the information. The migraines have gotten so bad, I had a Porta Cath put in to try and make the current treatments more effective. I know everybody’s different, but your stories, and articles have given me some hope. So thanks again for the information, but also your articles. I hope your treatments continue to work. Thanks again.

  • Katie M. Golden moderator author
    3 years ago

    Erin,
    That’s great that your doctor is willing to help you find ketamine treatment. I would suggest trying to find a pain management clinic that does ketamine. I’ve heard from others that some places will do a one-day infusion, you go home and then come back for one or two more days in a row. It’s definitely something to check out. There is a Facebook group called “Ketamine and Migraine” that may be able to help you find a clinic near you.

    Your doctor could try calling any of the docs at Jefferson, but I know that they are incredibly backed up and hard to get a hold of. Here is their website listing the docs and contact info: http://www.jefferson.edu/university/jmc/departments/neurology/programs/headache.html

    I hope this helps!
    -Katie
    Migraine.com Team

  • beckyalison
    3 years ago

    Katie, I’m just starting the process of thinking about headache camp. At this point in my “migraine career”, my headache specialist in Boston has recommended looking into an in-patient stay. I will first call to see if my insurance will cover it. My biggest fear is that we will travel all that distance and they will have me there for one day. I’m looking forward to having fresh eyes and new ideas for treatment. My headache specialist is AWESOME, but I think she’s kind of out of ideas for me, too. We’ve tried “everything”, including Botox (which worked for about 2 years, then stopped working). I’ve read everything I can on the “headache camp”.

  • Katie M. Golden moderator author
    2 years ago

    Beckyalison!
    I’m so excited for you!! That’s so wonderful that you got in so quickly. I know this will be a trek for you to get to Philly. I’d love to know how it goes! I can’t promise they have the magic answer that will get rid of your migraine, but I really hope that they can at least help you manage them and reduce your overall pain. Good luck!
    -Katie

  • Katie M. Golden moderator author
    3 years ago

    Beckyalison,
    You will have to go for your initial appointment, which is an all day affair. But if they recommend an in-patient stay, I can’t see a scenario in which you’d only be in the hospital for one day. Whether you receive lidocaine or ketamine infusions in the hospital, your dosage is titrated up over a day or two to see how you react and then monitor you for a period, making adjustments as needed. So don’t let that hold you back.

    I will tell you that they are currently scheduling new patients 4-6 months out, so call right away if you think you want to get an appointment. Also, expect a 2-3 month wait to get a hospital visit scheduled. They are absolutely slammed.
    Let me know if you have any other questions!
    -Katie
    Migraine.com Team

  • Elizabeth Roberts-Zibbel moderator
    3 years ago

    Katie, this is such an amazing, informative article! Thanks for your frank discussion of a complicated process, and for being a sort of “guinea pig” for the community. <3

  • beckyalison
    2 years ago

    I received a call back from Jefferson and my new patient visit is in just one month – May 25th! It is just the one day (psych, etc) visit, but I’m looking forward to start working with the doctors at Jefferson and maybe getting some new ideas regarding preventatives & treatment. Like I said, my headache specialist would like a second set of eyes, too. I FEEL like I’ve run out of options (even Botox stopped working), but I know there are other things that I can still try. We will make the LONG trip to Jefferson (about 9 hours) and hopefully come home with some answers and heading in the right direction.
    Thank you, Katie and migraine.com for all of your insight and encouragement!

  • Joanna Bodner moderator
    2 years ago

    Yay!!! 5/25 sure cannot come quick enough! This is wonderful news & I sure hope your visit there will give you the opportunity to explore new options with the hopes of giving you the relief you are great need of! It sounds like it has been a long journey for you and you certainly deserve a break and some answers!

    Be sure to keep us posted on how things go if you can! We are routing for you!
    Take good care,
    Joanna (Migraine.com Team)

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