Patient Perspective: Ketamine
I’ve recently written about the drug ketamine being used for severe Migraine patients. I’ve shared my experience with ketamine infusions as well. To give a different perspective on ketamine usage, I interviewed Terah Kuykendall from San Antonio, TX who has used the drug for the past few years to manage her Chronic Migraines.
Terah is currently on disability after working for Coca-Cola for 13 years and as an Account Sales Executive for a chain of grocery stores in the southwest. As her life changed due to her Chronic Migraines she has embraced music and art. She is also doing advocacy work through her Facebook page “Ketamine for Migraine.” She was gracious enough to share with us her story.
How old where you when your Migraines started? I first began getting migraines at 15. I am now 36.
How often do you currently get them and how long do they last ? When I first began getting the migraines at age 15, they were few and far between. As the years progressed, the migraines would come more and more often.
It was roughly 2009 (age 30) when I woke up with a migraine that never went away. My work life was disrupted. By 2011, all of the medications I was on severely impacted my ability to think, concentrate, focus, or even stand up straight. The same year, I received an awesome promotion at work that involved travel. Sadly, I wound up being hospitalized on a business trip far from home. I was in a vicious cycle, using multiple medications. In addition to my daily migraine, I believe my pain was being exacerbated by rebound or medication overuse headache. Ultimately, I had to leave the workforce.
In 2012, I was referred to a headache specialist at The University of Texas Health Science Center at San Antonio, Dr. Deborah Carver. She recommended a few things that I hadn’t yet tried (muscle relaxer, physical therapy) and eventually suggested ketamine. Since I began getting ketamine infusions in August of 2013, my daily pain average has been lower. Now when a bad migraine sets in, my rescue medication (Sumavel) will work. I am limited to six shots a month and have found that to be an adequate number to manage the really bad days. To be clear, I still get migraines, but they are now manageable.
Have you tried any of these treatments and have they helped you?
- Triptans – Initially, one would work, but then it would ultimately it would stop and I would have to search for another one.
- Preventatives – No preventatives ever made a dent in the migraine cycle.
- DHE – Not only did it not help, but often I would get a horrible headache during the DHE infusion.
- Opioids – I may have had a benefit initially and in small quantities, but long-term use exacerbated worse headaches. Rebound headache is very real.
- Botox & Nerve Blocks – Tried and failed.
- Physical Therapy, Chiropractic Manipulation, Exercise, Yoga, and Massage – Sessions would end in me feeling worse. For me these physical preventative approaches kind of stir things up getting the blood moving, which is bad for a migraine.
- Acupuncture/Acupressure – Did not help. I also tried cupping twice and that is a miserable experience.
- Surgery – I have not had any surgery related to migraine.
- Allergy Doctor/Diet/Foods – I found that I was allergic to several foods during an allergy skin test. This allowed me to do a targeted food elimination diet, which identified beef and egg allergies as migraine triggers.
- Gluten Free – No benefit.
- Lumbar Puncture – No excessive spinal fluid pressure detected.
- Birth Control – I am on a birth control that I take continuously, skipping the placebos and going straight into the next pack. This allows me to skip having periods, which has eliminated any identifiable menstrual migraine attacks.
- Blood Sugar Monitoring – I often will feel worse right after I eat but after testing and tracking for two months, found no correlation between blood sugar and pain levels.
Why did you start using Ketamine for your Migraines? Dr. Carver said she would like to try ketamine as I had exhausted everything else. I was incredulous… “The horse tranquilizer?” She said, “Yes.” She told me it was given in the hospital and was gaining ground in helping to treat intractable pain (severe and constant pain). She said she had one other patient trying it and would like me to try it as well.
Have you had Ketamine infusions? Yes, I receive a three-day inpatient infusion every eight to ten weeks. When I’m admitted to the hospital for an infusion, it is done in the ICU to be continuously monitored (respiratory, cardiovascular, fall risk).
Do you use Ketamine regularly at home to manage your Migraines? No, for a couple of reasons. Unlike some people, I do not get immediate pain relief as the ketamine is administered. In fact, there have been a few times when I have needed an Imitrex injection during the infusion. My pain relief begins approximately one week after the infusion and lasts for approximately two months. Also, the nasal spray used at home has to be filled by a compounding pharmacy, which can be expensive.
Is Ketamine more or less helpful than any of the other treatments you have tried? Ketamine has provided the only relief I have felt in many years. Since receiving the ketamine, I usually average about a six or seven (out of a possible 10 on the pain scale), which, while still bad, is a blessing. The bad days still come a couple of times a week but now, my rescue medication (Sumavel) almost always works whereas before the infusions it never did.
While I don’t think I could ever hold down a job again at least now, I get good days, spurts of energy and I was even able to take a few trips last summer to various friends’ weddings. I have to plan some down time into my trip itinerary to get plenty of rest and sometimes to recover but before ketamine, I never could have managed the trip.
Do you also use it for another medical condition you have? If so, what and does it also help? Ketamine is also being used to treat major depression, often taking effect within hours. It has been used in emergency room settings to curb suicidal thoughts and it works in the brain differently than standard anti-depressants. However, similar to migraine, we must remember that ketamine does not ‘cure’ migraine or depression, but it is another weapon in our arsenal.
Do you worry about potential addiction issues with regular use of Ketamine? No, for two reasons. While it can be accessed on the street (known as Special-K), it is not something one can easily acquire. An individual who uses the nose spray would have access to multiple and continued dosing, but the inpatient setting is highly monitored. Secondly, I don’t find it to be a particularly enjoyable experience so the ketamine isn’t something that I ‘crave.’
Describe what happens when you use Ketamine during a Migraine. How long does it take before you notice a change in the pain? How long does it last? During the infusion, I get really bad double vision and it seems to magnify any emotions I may be having. Therefore, my neurologist keeps Ativan on standby just in case I get agitated. I also get nauseous so I am given Zofran and Clonidine to prevent an increase in blood pressure. I begin to notice a change in my daily pain level approximately one week after completing the infusion and that relief lasts for two months.
Are there other side effects of using Ketamine that you experience? You have probably heard that ketamine is sometimes used as a street drug because people want to have the hallucinations and disassociated feelings it can cause. I receive a fairly high dose of it but have never hallucinated.
I find that during the infusions, I become very cerebral – deep thinking, thinking about thinking. I don’t have nightmares and nothing bad happens. My thoughts are just intense and everything I picture in my mind is vivid and slow. I don’t get euphoric, only thoughtful.
When it wears off, is the pain any different? At about the six-week to two-month mark, the headaches really start to set in again and it becomes time for another round. It may help if you think of my current infusions as boosters off of the initial treatment.
How functional are you when you use Ketamine? I am not very functional during the ketamine infusions. I will be dizzy and will need help going to and from the bathroom. I have found that when I eat, I have to concentrate on the process of eating. Within twenty minutes of disconnecting from the IV, I start going back to feeling ‘normal’ again. It takes about a day for my vision to clear up.
Do your family and/or friends know that you use Ketamine? Yes. Friends and family genuinely want to see me feeling better. I have not come across any one in my personal life who does not support my use of ketamine.
Social media has given me a platform for sharing my experiences with ketamine and to encourage others to talk to their doctors about it. Online, there are those who respond negatively to the thought of ketamine. They think it is similar to LSD and only know about it as a street drug or they’ve heard that it is used as a horse tranquilizer. I think these labels can be scary for them. When I explain its use as a general anesthetic for humans, some people are willing to learn further.
Do you think other Migraineurs should try it? Other Migraineurs should not try ketamine unless they have really and truly been through all of the other medications and procedures. If a migraine patient fits into these parameters, ketamine may be a last ditch effort and their only hope of gaining some measure of relief.
Anything else you want to mention? I administer the Facebook page “Ketamine and Migraine” at www.facebook.com/ketamineandmigraine. I use this page to post research articles and share my story. For those who prefer greater privacy, I also administer a closed group wherein I post the same material. I have found this group’s privacy settings allow for greater dialogue between group members.
Even though my insurance has covered every infusion I have had (seven since August 2013), my insurance has suddenly balked at paying for inpatient ketamine for 2015. They do not object to the use of ketamine (as it is an old and established drug) but they argue that I do not need to be admitted for a ‘headache.’ I am in the process of filing an appeal but due to the hospital’s mandatory ICU inpatient protocols, I cannot gain access to ketamine as I have previously. I am working to contact another local doctor (a pain management specialist) who provides ketamine on an outpatient basis. This will cause me to receive a lower dosage but I truly feel the effects would still be beneficial.
Thanks so much to Terah for sharing her experience with ketamine!