Headache Camp: Round 2

I previously wrote about an in-patient treatment program at the Jefferson Headache Center in Philadelphia. I fondly refer to it as “Headache Camp.” My first trip was in August 2013 and I’ve returned twice since then, most recently in March 2015. While I’ve been dying to tell you about my last two experiences, I had to wait while an insurance claim battle played out, which has now been resolved.

During my first visit at Headache Camp, I was given Lidocaine in addition to five or six other drugs all at once to combat the Migraines. This time was different. Lidocaine was replaced with Ketamine. Like Lidocaine, Ketamine is also a dissociative anesthetic often used for surgery. It’s an NMDA receptor antagonist, which causes hallucinations. Doctors have found at therapeutic levels it can do wonders for chronic pain patients. More likely you’ll see it used for burn victims, patients with phantom limb pain, and other intractable pain patients that have not responded to traditional treatment. Ketamine works to block pain signals in an effort to reset at a lower baseline. The pain management team, overseen by an anesthesiologist, and my neurologist were involved in my daily care.

Even though I had one camp session under my belt, I was scared. Ketamine is a serious drug. But I was hopeful that it could give me relief. On my first day, I waited in the admissions area for my bunk to be ready and I quickly spotted a fellow camper. She was very pale, and although it was winter, it seemed like spending time outside would be painful for her. She wore small, thin sunglasses on her consistently pained face. Even with ear plugs in she winced every time the door open or closed shut. She looked so miserable that I didn’t want to disturb her and engage in conversation about her Migraines. I just remember wishing that we would both find some semblance of relief very soon.

Once in my private room, I was poked, prodded and questioned for hours by curious med students, my neurologist, a pain doctor and his nurses. After rounds of consultations, I was finally given an IV to start the pain treatment. Let the relief begin!

As the nurse began to administer the first dose of Ketamine, I asked what it would feel like. She said it would be like I was drunk, but without the hangover. Having had some experience in that area, I thought that might not be so bad. And then wham! I felt like I’d had a martini on an empty stomach. Two hours later when the dose was increased, it was exactly like I had 5 martinis. I’m guessing that a lot of kids go to camp and experiment with recreational drugs or alcohol, and apparently Headache Camp was no different! With each increased dose, I thought for sure I would black out, but I eventually got used to it. I had double vision early on, but no nausea. I peacefully drifted in and out of sleep without the horrible, vivid nightmares I had on Lidocaine. By day two I started hallucinating, but again it was pleasant.

Headache Camp had just turned into the college years. I slept a lot, felt drunk, and tried really hard to focus and sound intelligent when the doctor came by…just like you do during an 8am lecture with a hangover. That’s not really a condition you want your Mom to see you in, but my poor Mom had a front row seat. I had vowed to ask for more help (see Help (Not) Wanted), so she stayed with me for part of my last two treatments. I found it extremely comforting to wake up, knowing she would be sitting there knitting. I can only imagine the crazy things I said to her in my zoned out state, considering I emailed one friend saying that, “if you call me, I’ll read your palm.” My Mom has eloquently written her version of the events that I can’t wait to share soon.

I had another amazing caretaker while in Headache Camp. Halfway through each stay, my boyfriend relieved my Mom of her babysitting duties. He engaged with the doctors and asked questions so that he knew how best to take care of me at home. He listened to me and was my advocate. During my most recent visit, he gently guided me back to reality when the effects of the Ketamine became overwhelming. For a brief period of time, I felt unsafe and scared. The doctor reassured us that it was the build-up of the Ketamine in my system and adjustments to my medications were quickly made.

Except for that one hour where I thought I was losing my marbles, I did enjoy the constant buzz and euphoria of Ketamine. But I wasn’t there to get high, I was there to get better. I stayed focused on the healing process. I did as much gentle yoga, stretching and walking as I could. I listened to music and used essential oils. I ate healthy, except for the daily cupcakes my Mom brought me. It’s hard to explain, but this felt less toxic than the Lidocaine treatment. I would occasionally get breakthrough pain that was managed with additional drugs, but overall my pain level hovered around 2-3 – a huge improvement!

Ketamine Headache Camp lasted about 6 days for each visit. The reason I went back a year later for a second Ketamine treatments was because I felt like I got relief for about 6 months after the first stay. The doctors say that after a second round some patients experience relief longer than the last time. After both stays, I notice that the severity of the Migraines decreased and I used less medication to manage them. I now have a Ketamine nasal spray at home to use for acute pain. It doesn’t completely stop the Migraines for me, but it is another tool to use to combat the pain. Actually, it’s probably the most effective tool I’ve tried.

In the coming weeks, I’ll share with you how I’ve adjusted to life after both Ketamine Headache Camps. I’ll also share my Mom’s beautiful story of taking care of me in the hospital. I know that Ketamine sounds scary and many people can be skeptical. I’m happy to answer questions. Please read “Ketamine for Migraine Management” to get information on how Ketamine works. More studies are needed before this becomes a widespread, accepted form of treatment for Chronic Migraine patients. I believe that in the right setting, with the proper oversight it could significantly improve the daily lives of certain patients.

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

View Comments (16)
  • PainWontGoAway
    2 years ago

    Hi again,

    After about 2 months of trying to get an appointment, I finally got a call back from the Jefferson Clinic and made an appointment with Dr. William Young at Jefferson for an initial consultation on May 17th. Supposedly he is one of the top there along with Dr. Silberstein and Dr. Marmura. I guess they will determine then where to go from there and see about the in-patient program. Is there anything you recommend I do until then? I do pretty much remember all the medicines I’ve been on and nothing has worked. Anyway, I guess I will also open up a new thread with my experiences there so feel free to join me there and follow me since I know a lot of people are curious about this program. If anyone has any questions for me or advice, feel free to email, message, or reply to me. I’m always up for discussion. I truly hope Jefferson can fix this problem I’m having.

  • Katie M. Golden moderator author
    2 years ago

    Sorry for the delayed response!
    I’m excited that you’ve gotten an appointment. Dr. Young is incredibly passionate.
    Make sure to bring a list of all your meds that you’re currently on and those you have tried and not worked in the past. It’s also really important for all of your records to get to the office either before you get there or bring them with you.

    I’d also say that you should go into it not hoping that they can “fix” you, but have a more realistic expectation that they can at least bring your pain levels down. I’m not sure if you saw it, but I just posted about another visit I had for ketamine and I think it will be helpful to you as you prepare.

    http://www.migraine.com/living-migraine/official-study-results-from-headache-camp/

    Let us know how it goes. Fingers crossed for you!!
    -Katie
    Migraine.com team

  • PainWontGoAway
    2 years ago

    Hi everyone, I just wanted to post about my first experience at the Montefiore Headache Center. To begin, it really is a beautiful hospital and the headache center itself is amazing and has its own wing. They even keep the lights dim in the waiting room because they know migraine sufferers hate bright lights.

    Once I was called in, a nurse took down the basic info of what I was going through and blood pressure. Then the main doctors assistant who is also a doctor came in to go through more of a description about what is going on and what I’m feeling. She was very thorough. She explained everything to the main doctor. Finally both the main doctor and the assistant doctor came back in to discuss everything. I have a few different types of migraines but always in the same area, but the main reason I was there was to take care of the one “stubborn migraine” that I had for a year on my right temple that still has not gone away. It has stumped many other neurologists that I have been to.

    The main doctor explained that it is definitely a rare condition that I have and wants to rule out Hemicrania first. They symptoms I have all point to Hemicrania. Always one sided headache, always in the same localized spot, always there but on different pain levels, sometimes moderate, sometimes severe but always there nagging me. No nausea or vomiting usually associated with it. She started me on Indomethacine which is the main medication used for this condition along with an antacid medicine because it’s known to cause stomach issues. Basically Indomethacine is Advil on steroids. That’s the best way to put it. It is the strongest anti-inflammatory there is. She put me on this for 2 weeks with a certain type of pattern on the dosages. First 3 days, 25mgs, next 3 days, 50mgs, 3 days after that 75mgs.

    I asked the doctor about the other different migraines I have, and she just mentioned that they’re all a manifestation of migraine and present in different ways. I guess for right now I just want to fix this “stubborn headache” and then once that is handled, I can get on a preventative for the other. Unfortunately, Botox treatments have been working less and less for me and the last treatment basically didn’t help at all.

    Basically, if this helps the pain then wonderful, if it doesn’t then it’s only a 2 week medicine so we can know quickly. If it does not work, then she said what I most probably have is a nummular headache which is usually treated with tricyclic antidepressants. I started the medication last night and my next appointment is in a month so I will keep everyone posted how it goes.

    Katie, I wanted to ask your opinion on something. When this all began a year ago, she asked if any type of head injury happened or any drugs or anything like that. As you know I did do that cocaine one time around when it started but I was too embarrassed to mention it. I think I probably should have told her but I didn’t want her to look at me any differently. I am thinking I want to tell her next time just so she knows. Can I just tell her that I’m sorry for not mentioning it last time because of embarrassment and tell her about it? I don’t want to seem like a liar but I just find it too embarrassing to mention because I am extremely upset about doing that. I can just let her know next time right?

    Anyway, I will let everyone know how the Indomethacine works in a few weeks and will follow up with everyone on the next visit. Feel free to reply with any questions or comments. I know Monty has an inpatient program as well but I think if it came to that, I would want to use Jefferson because from what I see, its the best.

    Hope everyone feels good and better days ahead!

  • PainWontGoAway
    2 years ago

    Katie, really appreciate your experience with that headache camp. Sorry if this post is long but I feel like the more detailed I am, the more people will understand. I have suffered from episodic migraines on my right temple since I was 10. I always had them controlled with Imitrex. When I say controlled, I mean a migraine would come (no aura) and I would take 25mg of Imitrex and it would completely cure the migraine until the next time. 0 pain after the medicine. I was always fine with this.

    Now here is where the real problem started. Please keep in mind, I am NOT a recreational drug user but there is one time a year ago (which I truly regret) where I tried cocaine. I don’t even know why I did it, maybe it was peer pressure, but I wish I never have. Anyway, I am not sure if it is a coincidence or not but a few days after that EVERYTHING went wrong. First off instead of my migraine always being on one side of my head, it transferred to both sides of my head and the migraine turned chronic and got significantly worse. The Imitrex I would take would bring the pain level from a 8-9 down to maybe a 4 but it would only cover up the pain for 2-3 hours and the pain would come right back.Plus I had to increase the dosage to 50-100mgs. Then if things could not get worse, even when the Imitrex was somewhat helping the pain, there would still always be a pain in the right side of my temple. It is actually a pain that has not gone away in one year. I’m going to call it the stubborn pain for all to understand. This stubborn pain has been called migraine, new daily persistent headache, nummular headache but these are pretty much all fancy names for Migraine.

    In the past year, I’ve been to about 8 neurologists, had an MRI and MRA done, been on 2 dozen medications (half which I already forgot what they were), had 3 Botox treatments (the Botox helped bring the chronic migraines from an 8 down to a 3-4 the first time, but it would never cure that one stubborn pain on my right temple. I have had an IV Magnesium Infusion with no luck. I also had multiple nerve blocks and SPG blocks which would work for about a half hour and then the pain would come back. Also tried a special compound cream my pharmacy put together with different medicines in it, one being a very small amount of Ketamine but that did not work. Finally, my headache doctor diagnosed that one stubborn migraine with a case of Neurolgia (possible damaged nerve). My choice for fixing the problem were Radio-frequency Ablation or Temporal Nerve Surgery. I was told the Ablation had about a 50% chance of working because they pretty much stick a hot needle in that one stubborn pain spot and try to burn off the nerve. Pretty much a hit or miss and even if they burned the nerve, it could regenerate and grow back 6 months later. Not so much optimism there. I decided to go with the nerve surgery since it had a lot higher success rate and while they do it endoscopically, they’re able to see exactly what they’re doing and removing the nerve causing the issue.. Now if any of you ever did research about this, the nerve surgery is actually done by a Plastic Surgeon and not a neurologist or neurosurgeon. I was referred to a very big plastic surgeon in DC who specializes in nerve surgery. He removed the temporal sensory nerves as well as said he found in the stubborn area spot that a nerve was tangled with the blood vessel so he removed both. I got really excited that he found something there but was really disappointed because this did not help my migraines nor did it help the “stubborn” pain.

    This has been really hard on me because not only am I battling the chronic migraines, but even when those aren’t so bad, I am still battling that one stubborn pain which can range anywhere from a 5 to a 9 on the pain scale. The pain is a really deep burning sensation and very migraine-like.

    Just last week, I was taking 100mg twice or more per day just to get through the day and I am pretty sure I started getting rebound and medication overuse headaches so I decided to just stop the Imitrex altogether just to stop my body from needing it so much and being so dependent on it. All I have been taking are Ibuprofin. It worked very little but I still have the chronic migraines and that one stubborn pain.

    This past year has been by far the worst year imaginable. My depression and anxiety have been through the roof and I miss a lot of work days because I just can’t function from all this. My social life has gone completely downhill and if I can go to work, I’ll just come home and go straight into bed. Many nights when in constant pain, I just start punching the walls and injuring myself and just outright wish I don’t wake up in the morning.

    Now back to when it originally started after that one-time use of the drug, many doctors all say that they don’t think a one-time use would turn my episodic headache into chronic but that type of drug does mess with the brain chemistry so who knows.

    Anyway, I do have an appointment at the end of the month with the Montefiore Headache Center which is supposedly one of the top in the country for migraines and headaches. I will keep everyone posted on how this goes. If I am still getting nowhere, I am going to consider this Jefferson headache camp because I feel this stubborn pain needs a major dose of combined meds and IV to completely kill it. I feel an unconventional headache needs unconventional methods. Sorry if this was so long but I wanted to be very detailed. I am battling 2 separate head pains at once and this is very hard on me and my family. My objective isn’t to find a cure for migraines, it is to bring my migraines back from chronic to episodic just like it used to be.

    Please feel free to message me or reply with any recommendations or if you have any questions. Looking forward to rid of this horrible pain once and for all. Thank you all for listening and I appreciate all of you writing about your experience. This seems like a new step in the right direction.

  • Katie M. Golden moderator author
    2 years ago

    PainWontGoAway- Montefiore has a great reputation and I’m sure they will attack your migraine disease with everything they have! I do want to remind you that there is no miracle cure for migraine, just better ways of managing the pain.

    Not that I’m a doctor, but I agree that your one-time cocaine use did not cause your chronic migraine. There are so many factors that can create the perfect storm that is chronic migraine, I doubt a one-time use is to blame.

    It sounds like your condition is very debilitating and you are missing a lot of work. I encourage you to talk to your HR about your short-term and long-term disability options, as well as understanding the Family and Medical Leave Act. Here are a few articles on those topics. Let us know how your appt goes with Montefiore and be open to what they have to offer. Ketamine infusions have helped me, but are not necessarily for everyone. Take care and good luck!
    – Katie

    https://migraine.com/blog/disability-income-preparation-guide/
    https://migraine.com/blog/the-family-medical-leave-act-migraine-patients/

  • DonnaFA moderator
    2 years ago

    Hi PainWontGoAway, We’re glad you’re here. Thanks for sharing your thoughts. We’re so glad to hear you have an appointment and we’re sending all good wishes for a favorable outcome. Please do let us know how you make out. -Warmly, Donna (Migraine.com team)

  • Jules2dl
    3 years ago

    I have a 2nd appointment at Jefferson coming up in 3 weeks. I’m praying I will be able to be admitted at that time and not have to return at a later date (I’m going to Philly from Chicago and $$ is a definite issue.)
    My 1st stay at “headache camp” was in October, 2014, and I received lidocaine infusions at that time. While my chronic daily migraine cycle was broken, weather continued to be a major trigger. I was grateful though to be out of constant, daily pain.
    Then last April, the daily migraines returned. My previous rescue meds (triptans, DHE) no longer worked for the weather-related migraines, which were worse than the daily ones.
    I’ve had 2 rounds of Botox with no results, and I’m getting fed up with my doc. I’ve been pressuring him to call Jefferson regarding lidocaine and ketamine infusion, while he continues to insist that I go see a psychiatrist first, to treat my depression. He thinks the depression is fueling the migraines and I’m pretty darn sure it’s the other way around! He moves so slowly and cautiously, not seeming to understand that each day that goes by is another day of pain, and each rainstorm is another 2-3 days of agony. I don’t think he appreciates my knowledge of this disease, which I’ve been a student of for 45 years.
    I found a doc in Chicago who does ketamine infusions but they are not covered by insurance and cost $1000/apiece.
    I’m praying I can get ketamine covered at Jefferson, as I feel it would be beneficial to my depression as well as to the migraines.
    Counting the days to camp…

  • 3 years ago

    Hello – I have a migraine pretty much every day at some level or another, sometimes a 2, sometimes a 7+. My question is, how do you know if an inpatient treatment will help? Should my headache pain level be high for many days in a row before it will work? What if, by the time I get into an inpatient program, my migraines are at a lower level for a period of time? What are your thoughts on this? FYI – I’ve been through lots of preventatives, to the point that we finally tried Botox, which worked for a while then stopped. I’ve tried all the triptans and several ergots… same story as most here.
    Thanks for your input!

  • Jkr
    4 years ago

    Katie, my pain dr was discussing using the ketamine through my nose. Have you done this? It’s not the same as the nose spray, it’s a qtip with lidocaine and ketamine. Thoughts? I’m desperate at this point. I do Botox which helps tremendously but when it runs out we still have to wait for the dose to be filled by insurance. I’m usually down a good 20 days without it. I just became a single mom and just don’t have time for these anymore. Your the first person I’ve heard who has discussed it. Please let me know if you think it’s worth it. Thank you so much for writing this.

  • Writermom
    4 years ago

    Thank you for sharing your experience with Ketamine with us, Katie. Hope your relief will last you quite a while.

  • 2MuchPain
    4 years ago

    What a great and insightful read, however I’m now left feeling confused and angry. I’ve suffered for 20 years and I’ve done more research than most med students and I’ve never heard of this ” infusion ” process. My many doctors ( too many to count over the years) have never talked about this either. I’m thankful you’ve found some relieve and I’m thankful you wrote about it. Time for me to start another research project, if you have extra info that would be helpful please reply.
    Thinking a trip to Philly is in my future.
    Cheers

  • Katie M. Golden moderator author
    4 years ago

    @2MuchPain,
    There are a couple of different infusions that can be administered. On an outpatient basis, some doctors will give you an IV for about 4 hours or so. Depending on what has worked or not worked in the past, the medicine could be DHE, lidocaine or ketamine. Like Kaci said, the infusions are usually done when you’ve had a long bout of Migraines that won’t stop.

    Since mine are chronic with no daily relief, I’ve been hospitalized. The first time was Lidocaine, but it didn’t help much. The second time was Ketamine and I’ve been back another time for Ketamine as well.

    What kind of doctor do you see? A general practioner or even a typical neurologist may not suggest this option because they aren’t familiar with it. A headache specialist is the type of doc that will work harder and smarter for Migraine patients. They are still neurologists, but only focus on headache disorders. Here’s info on Headache Specialists:

    I do want to warn you that these drugs are very potent. I hallucinate with every hospitalization. Most of the time, it’s not scary at all, but sometimes it can build up and you can become very emotional. There are meds to counteract the hallucinagenic effects so you’d just need to be honest with the nurse about what you are feeling or seeing.

    I wrote an article recently about ketamine that may answer some of your questions. And below I included all the websites I used to research the topic. That’s probably a good place to start.
    http://migraine.com/blog/ketamine-for-management/

    (1) https://www.erowid.org/chemicals/ketamine/ketamine_article2.shtml
    (2) http://www.nytimes.com/2014/12/10/business/special-k-a-hallucinogen-raises-hopes-and-concerns-as-a-treatment-for-depression.html?_r=0
    (3) http://www.nytimes.com/2015/01/10/business/ear-disorders-long-neglected-attract-drug-makers-attention-.html
    (4) http://www.independent.co.uk/life-style/health-and-families/health-news/the-women-who-was-saved-by-a-rave-drug-427185.html
    (5) http://www.conspiracyarchive.com/UFOs/Gorightly.htm
    (6) https://www.erowid.org/chemicals/ketamine/ketamine_timeline.php

    -Katie

  • KaciMo
    4 years ago

    I don’t know where you live, but you may be able to find a doctor who does infusion much closer to home. I’ve done it with doctors in Mississippi and Louisiana. Both were headache specialists, and after my initial appointment with each of them, they hospitalized me for infusion before they would begin any other form of treatment. Katie may can tell you more, and definitely do your research, but from what I understand, infusion is typically done with intractable headaches and the idea is to break the headache cycle or bring down the baseline headache. Also, in the case of some drugs, if you tolerate infusion well under close supervision, you can start the oral version at a much higher dosage afterward instead of having to go through the slow process of titrating up. My current doctor is a big advocate of infusion. He has two chairs for outpatient infusion in his clinic and says that some patients just need to be infused every 6 months or so to keep their headaches under control. Unfortunately I’ve never had success with it, but my doctor claims that I’m a rare case and it helps the majority of his patients. Definitely worth looking into.

  • RobertCan
    4 years ago

    Just when I thought I’d tried everything to treat my chronic migraines, I come across an article like this one that offers renewed hope for relief. Thank you, Katie for sharing your story!

  • KaciMo
    4 years ago

    Katie,

    Thanks for sharing your experience. I’ve done inpatient and outpatient infusion I think 4 times now, the most recently being with Lidocaine (and other drugs) in December 2014. Now my doctor has been able to get clearance to use Ketamine in our state and wants me to do an infusion with it. I’ve resisted because none of the other infusions have done any good and I’m still paying for the last one. Plus it would mean taking off an entire week of work when I’m already having to miss a day or two a week lately with migraines. Your experience almost makes me want to reconsider. However, I have tried Ketamine nasal spray, and it didn’t help. I’m trying oral Ketamine now as an alternative to the infusion, but I can’t find anyone who’s had experience with it or any information on it online (except for recreational use, which is not what I’m going for).

    It’s tough making these decisions regarding treatment when it’s so costly and there’s so little evidence that it will help, especially in headaches as resilient as mine. But at the same time, I don’t want to miss out on what could have been “the magic bullet”.

    I’d love to hear other people’s experiences with Ketamine.

    –Kaci

  • Katie M. Golden moderator author
    4 years ago

    @ Kaci-
    I use the ketamine nasal spray at home. I didn’t even know it came in pill form. Maybe the nasal spray will work differently after you’ve had a Ketamine infusion.

    Before Ketamine, I did an 8 day lidocaine infusion, which didn’t help at all. A few months later I went back for ketamine and it has helped tremendously.

    I know it’s hard to get off work, but if you can I would really encourage you to take time off after you get home to readjust to life. It was at least 4 days before I felt normal.

    Let us know if you go in!
    -Katie

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