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Is It OK to Say I Feel Good?

Is It OK to Say I Feel Good?

Every single superstition… crossing my fingers, knocking on wood, etc is in my daily vocabulary more now than ever. Because I’m not used to saying “I Feel Good,” but I do!! It likely won’t last long, but a few more months would be nice. It’s honestly tough to say out loud. The recipients of my words have mixed responses from “that’s awesome,” to “what are you doing different” to “are you thinking of going back to work soon?”

Not good enough for my former life

Let me clarify, when I say I feel good, I mean relative to the days or weeks I spend on end in bed. Right now I have more energy, but I am still never without some level of Migraine. Usually a 2-3 when I wake up and averaging a 5 overall in the day instead of a 7 or even an 8. I still need a daily nap of 1-3 hours. So, no, I am NOT considering going back to work at this time. A lot more would have to change.

What has changed?

The question of “what has changed,” is valid. I’ve described in length the in-patient Ketamine infusions I have received from Jefferson Headache Clinic. My last and third visit for Ketamine was mid-October 2015. Something was different this time. Due to timing of my admission, the Ketamine was increased slower than in the past. I think it helped my body to adjust.

I typically get double vision at the highest dose, which I didn’t. I could even tolerate watching a little TV. I always try to be active in the hospital although it’s hard when the meds can make you dizzy. I managed not only to take one or two walks around the floor a day, I even rolled out my yoga mat (under supervision, of course).

A change in treatment plan

My summer had been plagued with non-stop Migraines with aura. Those are the most intense, painful and hard to control. My headache specialist and I had come up with a plan to see if I could get some relief. I would get Botox, four weeks later I’d do a nerve block, same thing four weeks later, and then it would be time for my next Botox. This approach seemed to make a difference, but I still couldn’t knock the auras. My local headache specialist sent me to Jefferson who quickly made an appointment for me to go in for a five-day Ketamine infusion. They say the better you feel when you enter the hospital, the better the outcome. For the first time, I can attest to this.

Still need rest

When I got home, I pushed myself to recover. Within a week, I felt comfortable driving, running errands and taking guests. Previously it was at least a month before I felt like myself. I still need naps and to take my meds and do yoga and meditation. Just because I’m more functional doesn’t mean that I can neglect those things.

Waiting for the migraine to return

I’ve been able to enjoy more dinner parties or visits with friends. I have to save my energy, but I have more of it now. Of course, I’m waiting for the other shoe to drop. After four years of this, I know it will happen. But right now I’m taking full advantage. Maybe that’s not the right approach either. I could be doing too much, therefore inviting the destructive Migraine monster to appear sooner rather than later. I just have to decide day by day what my body can and should handle.

Even if by some miracle this feeling lasted for another year, I wouldn’t even consider going back to work. I’d likely need regular Ketamine infusions, Botox and nerve blocks to maintain the level I am in currently.

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

  • EHLERSpatient
    3 years ago

    While I am thrilled for you, my 31-year old son, also formerly a Jefferson Headache patient whose migraines stem from having EHLERS Danlos Syndrome was given Ketamine the other night in an ER (10mg then 40 mg along with Haldol). Yes, it broke the headache but 12 hours later his tongue was so thick and he hard such severe dystonia we drove him back to the ER. En route, he stopped breathing. After the ER got him breathing again, he stopped breathing again. He will be on meds for weeks.

    My point is, this isn’t a “miracle cure.” It was developed as a horse tranquilizer. Be very, very careful before you use this “alternative” and beware of after-effects. My son almost died.

  • Katie M. Golden moderator author
    3 years ago

    Wow! That’s so awful, I can’t imagine how scary that was. You are right, ketamine is not a miracle drug. It helps me and side effects like the one he had are rare, but I always believe people should research treatments for themselves before deciding they want to try it. I’ve actually never heard of the ER giving ketamine for migraine.
    I’m still shocked and heart-broken that your family went through that.
    -Katie

  • Katie M. Golden moderator author
    4 years ago

    @Bluebird,
    I just wanted you to know that you’ve made an impact on our community. We’ve interacted many times and your comments are always helpful, insightful and honest. Thanks for being a part of Migraine.com!
    -Katie

  • Kara
    4 years ago

    This is wonderful news that you are feeling better for the time being. It is a small step in the long battle of migraine fight. I hope it does last as long as possible for you. I totally understand the lying in bed and not being able to function. I also get the questions and statements from family members, friends, etc that always ask if I am returning to work because I look fine. I also get teased when I am not feeling good (I also have fibromyalgia) when I walk a little differently due to the pain. But that is due to people not understanding what I go through on a daily basis or their misunderstanding of what I go through all the time because they never understand it and never will unless they have this happen to them. But with this happening to me since I was 11 years old (I am almost 39 years old now), I have developed a thick skin and most of the time, the misunderstandings do not bother me. But the annoying statements of you look fine and should go to work and get off of disability is completely annoying. Sometimes I wish they would experience what I deal with on a daily basis, so that way they would understand that this is not fun nor do I want to go through it, but I have made my peace with it and accept that this is how my life is due to the horrible illnesses. I just wish there was more understanding in the world. 🙁

    Regardless, I am happy that you are having a little better time and that you are doing well currently. I hope you continue to have a long duration of feeling better and wish you the best! 🙂

  • Erin
    4 years ago

    Thank you for continuing to write about your Ketamine treatments. I’ve been talking to my neurologist about trying it. He’s supposed to be doing some research, and getting back to me. Unfortunately, I haven’t heard a thing from him. Thanks again for your articles. Gives me some hope.

  • Katie M. Golden moderator author
    4 years ago

    Oh and just so you all know, it’s not ok to say I feel good. I’m kidding, but right after this article was published, I had a week of bad Migraines. I jinxed myself. Although today I think I’m coming out of it.
    Oh well!
    -Katie

  • bluebird
    4 years ago

    Thank you for your clarity. Some of us don’t respond to current treatments…even when we are doing our best to follow recommendations for self management. Some of us have a chronic illness. We do the best we can, try really hard to be upbeat when we can, are compliant with treatments, diet and exercise and …still we have Migraine. Hope you can catch a break again soon.

  • The Migraine Girl moderator
    4 years ago

    I always feel like I jinx myself in this situation. “I can’t believe it,” I’ll say to a friend, “but I’ve actually been feeling really good lately!”

    BOOM. Within 24 hours I’m hit again. Curses.

    Fingers crossed your day is good today and that you’ll be on the upswing again soon (if you’re not already). I love this piece.

    Hugs,
    Janet

  • reasings
    4 years ago

    Great article that I can certainly relate to. Wonderful to hear that you are experiencing some better days at this time:)

  • Karen Rudd
    4 years ago

    Absolutely. Celebrate! Enjoy! Feel great! I’ve had brief periods of respite over the last 35 years and loved every second of them. Take advantage of every second, because none of us know when the giddy good will stop, and we will be forced back into seclusion. On December 17 at age 53, and after 35 years of essentially constant migraine pain, I suffered 2 strokes in the ER (actually while in the CT scan tube) while awaiting treatment for what I believed was just another out of control episode. I am now relearning how to walk, think and reason. After nearly $250,000(!) in tests and hospitalizations (most recently discharged just today, after another episode (NOT another stroke, thank you God) I am here to tell every one of us to live and love every second that you are here, in pain or not. The newest challenge for me is a new pain management routine, because the pain now is bad enough to snowball into neuro deficits if not nipped in the bud. I have low blood pressure, blood sugar and cholesterol and am now slightly anemic. They’ve ruled out tumors, malignancies and lots of exotic conditions, and done every neuro and cardiac test that I’ve ever heard of and many that I haven’t. I’ve been tested for auto-immune diseases like lupus, RA, hepatitis, TB and Giant Cell Arteritis.

    All those tests? Negative and/or benign. No one knows why my brain revolted and the new pain level is impressing even me, though I’ve had serious pain for most of my life. My doctors say they may never know the why, we just have to manage what we can and deal with whatever my body decides to throw at us. Control the pain and control the symptoms. Move forward and fight, because I don’t want to leave the people and places that I love. My daughter is expecting our third grandson this spring, and I intend to be here for his arrival.

    Wishing you joy in all things, even challenges because they impart wisdom.

  • bluebird
    4 years ago

    “No one knows why”.

  • Katie M. Golden moderator author
    4 years ago

    Karen,
    You said it best that “no one knows why my brain revolted.” I’m so sorry to hear about your latest episode and strokes. You are so brave. And your post was very eloquent and wise. You’re right enjoy every moment of feeling well because you never know. I lift you up. Thank you so much for sharing your story and your wisdom.

    -Katie

  • HK
    4 years ago

    Thanks for the uplifting message!! No matter how well or poorly we are doing, we can all celebrate the positive response to migraine treatment. Like you, I have migraine that starts small (3) each morning and increases to about 6 or 7 by evening. I, too, left my work and am unable to return. I’m never without migraine and it can be frustrating! I usually tell people that I’m “about the same,” which is honest. I look forward to the time when I can report progress. In the meantime I am always encouraged when I spend time with the online community. Thanks for being there, friends.

  • bluebird
    4 years ago

    I look forward to the time when the medical community and insurance companies take our plight more seriously. I just learned that several Headache specialists are not being compensated enough to be able to continue their practice in the specialty!

    Apparently the problem is not finding patients- there are plenty- but the problem is they are not being paid fairly. What a waste!!!

    I look forward to a time when I can report progress too.
    I am grateful for moments of feeling wellness and good cheer, productive hours and the taste of beauty.

    I am grateful to this online community for support over the years. The easily accessible up to date info and the experiences of others who have tried treatments, has helped me not to feel alone. This group has helped me communicate responsibly about Migraine disease to my family and friends. You have held my hand through dark times and empowered my voice in community. Thank you for holding out your truth for me to feel connected.

  • Katie M. Golden moderator author
    4 years ago

    @joyeann,
    I have gone through the disability process. I’m sorry to hear that you need to stop working, but you must be in incredible pain and you need to take care of you.

    The article below that I wrote might help you or give you a starting point. I seriously recommend that you get an attorney or specialized group to help you through the process. I used the Advocacy Group and they were amazing. They called near deadlines, would fill out paperwork for me, instructed me on what to do next. They were so helpful and I was approved within 5 months. However, that’s not a typical result. I hear all the time about people who have been trying for years. If you do contact the Advocacy Group, let them know I sent you (I get a small bonus). They really were great to work with. http://www.advocacy.com

    https://migraine.com/blog/disability-income-preparation-guide/

    Let us know how your journey goes!
    -Katie

  • joyeann
    4 years ago

    I too have suffered from debilitating migraines for 30 years and have tried everything. At 57, I have just now had to quit my job due to the chronic daily migraines and neck pain. I’m wondering if any of you have gone on disability, and if so, how difficult was it? I’ve started keeping a pain diary, but that is so depressing to constantly think about pain and migraines. Thank you for any insight. Joye

  • Katie M. Golden moderator author
    4 years ago

    HK,
    I’m so glad you find refuge here at Migraine.com. Our stories are similar and so are our frustrations. Just having others know what you mean makes it feel better. Thank you for participating!
    -Katie

  • britt
    4 years ago

    Yay, Katie! I’m so glad you’re getting a bit of a break and feeling good. It’s so good to hear when people in our community have positive breaks in their lives.

    I had to trippiest experience with ketamine, where i ended up not able to speak and thought that I was plastered to the ceiling and couldn’t recognize my doctor. Luckily, he held my hand(and helped hold me down because I kept trying to run away) and counted down the time for me till the drug wore off. I discovered I am terrible at taking drugs and will never, ever try hallucinogenic drugs on my own. 🙂 Life lesson.
    Sending you all the best and I hope the relief continues!
    Brittany

  • Katie M. Golden moderator author
    4 years ago

    Brittany,
    I am so sorry, but that made me laugh out loud. I’ve had my own weird experiences with ketamine, but that one is pretty funny. I quickly learned that although I wanted to do it on my own, I really needed people I love nearby. I would forget what day or time it was, I’d ask the same questions over and over. But then there was that time I thought my boyfriend was there to kill me. Thank god the nurse knew what to do.
    Your sister in Ketamine,
    -Katie

  • mammapeaches (Susan McManus)
    4 years ago

    Oh how I understand what you are saying! Last year I had two fantastic months and thought I was “cured”! I had been diagnosed with sleep apnea and started using a CPAP. Then, it all came crashing down again. You have to deal with people saying, “I thought you were all better?” Currently, I feel I am slowly getting better, but am keeping it very private. Started seeing a chiropractor 6 weeks ago. My C2 vertebrae is misaligned. Showed X-ray to my neurologist and he agrees! Says he thinks I might be on to something! The C2 has facial nerves associated with it and 90% of my migraines are facial/sinus. Sorry for such a long post, but if someone has not had a sleep study or neck X-ray done, maybe this will help. What a great forum we have to share our stories and information. I hope the ketamine treatments are your answer! I will cross my fingers for you!!

  • Katie M. Golden moderator author
    4 years ago

    Mammapeaches,
    You know exactly what I mean!
    I really, hope the chiropractor and CPAP help you!
    -Katie

  • 23r1c5h
    4 years ago

    It’s wonderful to hear when someone gets some relief, no matter how big or small. I have been curious about the Ketamine injections, it’s very good to hear from someone that has been getting them and getting results.

    Keep up the positivity, sweetie – I am praying for you.

  • Katie M. Golden moderator author
    4 years ago

    Thanks so much Stacey!

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