“Research is finding new treatments, but nothing is available to help you now,” my headache specialist said. “You’re the same age as my daughter. I would want her to have relief while she waits for better medicines.” This is how the doctor announced that he’d reached his limit of treatments to try for me. He then prescribed Opana, a long-acting opioid. As kind and compassionate as he was, the prescription combined with the conversation to reverberate through my mind: YOU WILL NEVER FEEL BETTER.
This was in June 2009. It kicked off The Worst Year of My Life. I spent that year in horrific pain and housebound in a city where Hart and I had no support system. When I did get out of the apartment, the weather was miserable, the city was overstimulating, and people were aggressive (especially compared to Seattle’s friendly superficial social interactions). All those factors contributed to a terrible year. But the worst part was that I had given up hope of ever finding an effective treatment.
The future I saw before me was an interminable hell: days of vicious pain with no possible relief, nausea so severe I could barely eat, going to bed in tears each night wondering how I could survive another day. Even reading, which has been my escape since I learned to decipher written words, was impossible. For months, suicide seemed like the only alternative to this future.
I began writing this story after three readers responded to Blindsided By Grief by telling me they have given up hope. My heart aches for them because I know what it’s like to feel desperate and helpless. I’m also worried that I inadvertently made them feel worse. What I should have written was “I will never, never, never again give up trying to feel better.” Because I have given up before. My hopelessness multiplied already terrible physical symptoms to the point that they became nearly unbearable.
I don’t see my determination to never again give up as a sign of some superhuman strength. When my options came down to die, live in misery, or believe in a better future, the latter felt like my only reasonable option. If I stop trying to get better, I stop wanting to live. I will do everything I can to avoid feeling that way ever again. I must believe in the possibility of a better future—and that it’s my job to find the most effective treatment for me—to keep the helplessness and hopelessness at bay.
I did not realize until today what a pivotal role my former headache specialist played in my loss of hope. I have never faulted him before. He was truly sorry he could not help. But he didn’t say *he* was out of ideas, he told me that nothing existed that could help me. He told me to hang on until science caught up with me. It’s as if he took lessons in how to destroy a patient’s spirit. And to think that I found relief three years later with cyproheptadine, one of the oldest migraine preventives available.
Telling someone else to have hope won’t automatically instill it in them. Instead, I’m sharing my story to show that it’s possible to find hope again even when it feels lost for good. For me, hope came back even stronger and more realistic than it was before. Sometimes hope doesn’t feel like enough, sometimes it feels like the despair will gobble me up. But most of the time, it’s a life preserver that I cling to so I won’t drown.
I agree that hope is vitally important. My friends sometimes comment on how ‘courageous’ I am in my persistence after 27 years of frequent migraines, but as you said, refusing to resign myself to these headaches seems like the only viable option to me. I feel better when I am trying some new strategy, however far-fetched it may seem, because at least for a while I can believe it will work. Then of course, there’s the disappointment when it doesn’t (because nothing has. . . so far) but even that is better than feeling helpless and hopeless. I also had a neurologist who just dropped me as his patient when everything he tried failed, which was disheartening. I’m thinking of seeing the new neurologist in town, even if I don’t have a great deal of confidence that he’ll be able to help (because if there was a new treatment out there, I figure I’d have read about it on the Internet already!) but you never know. Thanks for your blog. I’m just recuperating from 5 days of hell and it helps to read others’ stories.
Been there, done that. I’ve been through several neurologist now that have run out of treatment ideas, and I’m so susceptible to rebound that I can’t take any sort of triptans any more. I took a 6 week class on behavioral health modification that included 2 hours a day off of physical therapy. I thought it had all helped, but I’m back on steroids after another 6 day migraine.
PS-the article about CGRP. I am actually signed up to participate in a trial. I am beyond excited. But, seeing in this article the cost, I am shocked and alarmed. And worried for all the people who don’t have insurance b/c this cost is outrageous. Even my botox now costs $7,000 per visit, 4 visits per year. I feel incredibly lucky to have insurance now but I may not always have it as so many don’t.
Dear Kerrie, thank you for this post. it’s incredibly honest and helpful to the many people out there who feel like they have tried everything. i think it’s important for drs to know when they mess up. Just recently i had a professional tell me “I don’t know what to do with you” in response to my chronic migraine. I wrote an anonymous (b/c I still get care their) letter to this person explaining in a neutral voice how that statement and the zero follow up and plan after, left me devastated for a few weeks. Earlier in my search for treatment I had 3 somewhat similar and equally awful experiences and I was too young to let them know how unprofessional they were. Yes, this dr should have told you his knowledge wasn’t adequate to treat you. He should have referred you to another neurologist, or even a headache clinic. I am glad that you rebounded from this (although the time lost is terrible). We people with migraine need to support each other in these instances. The medical arena needs to improve a lot.
What do you think about the development of mononuclear antibodies to treat migraines? Here is a link to an article. http://www.theverge.com/2016/5/24/11712554/migraine-drug-treatment-headache-cost-pharmaceutical-health-insurance?yptr=yahoo
Becky, I just sat down to write about this article. It’s a good one. I’ll post about it tonight or tomorrow morning.
Take care,
Kerrie
It always amazes me just how personal, varied, and quirky life with migraine is. You’re upset that your doctor took your hope and I’m upset that mine gave me false hope. Doctor after doctor told me that menopause would improve my migraine symptoms. They were dead wrong as the migraines are even more prevalent now. I am coming off of the worse two years of my life where I had to learn to accept that sometimes there is no medical hope (ie. science and medicine need to catch-up to my migraine and gut illnesses) but that doesn’t mean I have to give up hope of having a life that has joy in it. I am blessed to live in a community where migraineurs are pretty open and vocal so it’s easy for us to find each other. I do think that one way to deal with the despair is to be bluntly open with your loved ones, and best friends, about how migraines affect our lives and the little things they can do that help us deal with/get past the despair. Even though our experiences are different I thank you for addressing this important topic!
Gina, I’m not sure we disagree. I absolutely don’t want false hope, but this doctor gave up on me without suggesting some of the most basic migraine preventives available. My current doctor does an excellent job of being truthful about the intractability of my chronic migraine, while also recommending treatments that might work and telling me about current research. I never leave his office feeling discouraged even though the gist of what he tells me is the same as the doctor I wrote about.
I’m sorry you were mislead about menopause. Doctors used to believe that was true and, I’m afraid, broke a lot of people’s hearts by telling them that. Are you aware of the recent research showing that migraine attacks tend to increase with menopause? (http://www.montefiore.org/body.cfm?id=1738&action=detail&ref=1279) I’m not sure where you are in the process. The research is early, but it appears that a lot of people have an increase during perimenopause and menopause, then level off post-menopause. Everyone is different, of course. (I hope you don’t feel like I’m trying to give you false hope—I want to share the gist of the research with anyone who might be reading these comments.)
I also agree that being ill doesn’t mean living without joy. It can be harder to find it, but it’s absolutely possible. In fact, I wouldn’t say that the doctor took my hope. We all have to work to keep our own hope alive. The problem was that I was already in a bad place when I had that interaction with him, so I wasn’t able to hold on to the small amount of hope I had remaining.
Thanks for sharing your thoughts. I’m so glad you have supportive loved ones—that helps so much!
Take care,
Kerrie
Hope at this moment you are feeling ok. For awhile I wanted to tell you what my daughter in law did. The suffered for years with migrane. About five years ago she decided to have a complete hysterectomy! She was 37 at the time. Today she is doing well. Has many headache free dats and has more energy than anybody.!
On occasion she will have HA
Nicky, that’s great news! I’m so glad it worked for her. Some women do get relief, but some report that their migraine attacks get worse with hysterectomies. And some find that the hysterectomy doesn’t help, but do get relief at the time when they would naturally go through menopause (because a hysterectomy doesn’t eliminate all hormonal factors).
For anyone else reading this who is considering a hysterectomy for migraine, consider talking to your doctor about continuous birth control use (the NuvaRing is often recommended because it keeps hormones steadier than the pill) or medical menopause (which is drug-induced menopause). Even if you decide to go through with the hysterectomy, these two alternatives will give you helpful data before deciding to do the surgery.
Take care,
Kerrie
You’ve probably done this already, but have you seen a ketogenic dietitian, not just the same dietitian that you have used for years? Hypoglycemia should go away if your body is responding properly to the ketogenic diet. You may be doing the diet correctly, but your body is not responding correctly. Perhaps a ketogenic dietitian could identify why your body is not responding properly to the diet.
I’m sorry it’s so tough for you. Hang in there.
Thanks for your concern, Becky. I’ve spoken with three different dietitians who specialize in ketogenic diets. The problem is that my blood sugar is on the low side to begin with and, with a 3.75:1 ratio, my carb intake is also much lower than most adults on ketogenic diets. Low blood sugar is actually a common side effect of the diet with a high ratio, the difference is that the range changes. For normal diets, anything below 70 is considered low. For keto, 55-75 is considered normal… as long as you don’t have symptoms of hypoglycemia. Unfortunately, my symptoms kick in in the low 60s.
Even without hypoglycemia, I think the diet is a bandaid for me, rather than a long-term treatment or the reset my dietitian told me about. I’m sticking with the diet as long as it enables me to function and I don’t have a better treatment in place. But I don’t think it will keep working for too much longer. (Though I hope I’m wrong on this assessment.)
Take care,
Kerrie
Great entry. Describes how I felt and what my doctor said. Can I share this on my Facebook page?
Thanks, Becky. You can share it, but please link to it rather than cutting and pasting. Thanks for checking.
Take care,
Kerrie