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An Open Letter to My Doctors

“Please don’t give up on me!” I find that thought going round and round in my head every time a doctor’s appointment is pending. It’s a silent plea that rarely is verbalized but which trails so many of us doggedly. Even when we’ve had good experiences with the medical profession this concept of “giving up” often lingers. Interestingly, it was a conversation with a pharmaceutical research scientist that helped me put it into perspective recently. He pointed out how migraine disease is often treated differently than other diseases. There is more of a tendency to give up, both ourselves, society and even healthcare professionals. It is more likely for people with migraine to be told to “accept” things as they are or accept minimal improvement.

Please don’t give up on migraine patients

Personally, I’ve been really privileged to see some of the top certified headache specialists in the country since moving to the USA. However, it hasn’t always been a smooth path and I frequently hear that from others also. There are frequent struggles with insurance, a sad lack of certified headache specialists, and, most frustrating, sometimes a discouraging lack of understanding.

Every time I hear someone say that their doctor has “fired” them I wonder, “How is that even possible?” And my heart breaks. For them, for all of us living with migraine, for our children who are at risk for inheriting it. We long to see change in the treatment of this disease and other headache disorders that are still so misunderstood, not to mention the other health conditions that so often tag along for the ride! Somehow, I’d like to try and reframe things – after all, wouldn’t you?

Reframing things

And so, here are some thoughts to share with our doctors as well as our friends, family, teachers, and employers. Maybe you resonate with some or all of these:

  1. We are not weak; we are strong!
  2. We do not give up easily, but actually persevere through unimaginable pain.
  3. We simply cannot always push through and even if we tried to, that may not be the safest thing to do.
  4. Please don’t feel like you always have to “fix” us; sometimes validation has the most powerful impact.
  5. We know that we’re stressed, but on those rare pain free periods an incredibly happy person emerges. Please don’t tell us to reduce stress – most likely, we’re already working on that!
  6. If positive thinking worked, we’d feel great! We truly would love nothing more than the placebo or any other effect to happen as long as it brings relief!
  7. If we’re afraid to try a new medication or treatment there’s a reason for that; it’s not lack of cooperation or unwillingness to “get better.”
  8. We know you’re short on time, but we long for you to partner with us in this journey and that means somehow finding the time to listen.
  9. We have hopes and dreams for our lives – hopes that are frequently challenged and dreams that often seem unreachable, but still we hold on to them.
  10. Sometimes the most powerful thing to say is, “I’m so sorry you’re dealing with this. I hear you and I’m not giving up!

Bright light in a dark disease

To those awesome doctors who partner with those of us living with migraine, cluster or other headache disorders, and who refuse to give up – we value and treasure your dedication and compassion more than you can ever know. You are a bright light in the midst of a dark disease, and you are helping make a difference for us now and for the future.

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

  • Barbaraj-g
    3 days ago

    #7 really resonates. I have started seeing a new neurologist. I want to try a more homeopathic/holistic approach. She wanted me to try Emgality. I did the starter dose in her office without reading any reviews. While it does have some great reviews a number of people reported issues. As anxiety and migraine seem to be best friends, I became very anxious and did not like the idea of continuing a medication that has a 28 day 1/2 life so that if I developed side effects it would not be a simple just stop. Not to mention I saw no improvement in my headaches. When I went back to the neurologist and told her my decision she chastised me and told me a month was not long enough to tell if it was going to work. I reminded her that I was looking for a holistic approach. She gave me nothing to work with from that approach. I left feeling extremely discouraged and invalidated.

  • Wayne
    4 days ago

    Great article, Thanks!

  • slhart
    1 week ago

    Thanks, great article. I feel like my doctor is trying to get rid of me.
    First she stopped my opiates
    Next she stopped my Phrinalin I took it in the evening when I needed relief. She only prescribed 90 tablets for 90 days. She didn’t even tell me she was cutting this medication, I called for a refill and was told she discontinued the med in May but I had filled it in July?? I was afraid to argue the issue.
    Now she’s monitoring my Esgic. I get 60 a month. She said I’m causing my chronic migraines by using the Esgic.
    She also wants to cut my imitrex in half.
    I am afraid to leave the house. My anxiety is off the charts. It feels like everything is a trigger, noise, smells, lights etc
    I tried the new med Aimovig for a year, it helped for a month or two then it just stopped. Switched to Amgality which was a nightmare.
    I was afraid to tell her it wasn’t working. She makes me feel like a failure.
    I’m on Medicare so my in network physicians are limited.
    I’m at the mercy of this doctor that’s blaming me for my migraines.
    I’ve had migraines since age 11 and I’m now 56. I dread going to the doctor. I just want some relief, I guess that’s asking to much.

  • Shoshana Lipson moderator author
    6 days ago

    I’m so sorry that you are going through this and am glad that you are here in the Migraine.com community. So many of us deal with doctors who we do not necessarily feel are on our side or partnering with us, and that can be challenging on top of having migraine attacks. The good news is that even with Medicare it can be possible to get some great doctors but sometimes it take fighting with your insurance company to see a doctor who might be out of network. It is really important to have a doctor you can work with. I’m working on an extensive list of certified headache specialists as well as patient recommendations that I’ll be making available to anyone who needs it, but in the meantime the link from Donna may be helpful to you! Hugs! Shoshana – Migraine.com team

  • DonnaFA moderator
    1 week ago

    Hi @slhart, I wanted to share this article from the Cleveland Headache Clinic, hopefully to share some additional information with you. Esgic can be both addicting, and is known to contribute to medication overuse headaches. The article shares that Imitrex is seen as more effective, and if your insurance is covering it, maybe you could discuss realigning your treatment protocol to eliminate the meds that she has concerns about in favor of Imitrex.

    If she is not helping you feel heard, maybe you can use this resource to help you connect with a headache specialist in your area. Sending all good wishes that this can help you either connect with your current, or a new provider, who will feel like a partner in your healthcare. -Warmly, Donna (Migraine.com team)

  • kmh
    1 week ago

    I am so glad to see this article, and, in some ways, I agree with the author. This tone and approach is probably the best option when talking to your doctor. This is a great piece.

    Having said that, I am angry. I am angry at doctors who have dumped me as a patient. I am angry at doctors who blame me for my pain. I am angry at doctors who compartmentalism my body – separating migraines, depression, anxiety, interstitial cystitis, and on and on, like somehow these things and treatments are separate, with no impact on one another. I am angry at doctors who express concerns about the very real risks of treatment, while ignoring the reality and, frankly, danger, of continuing on the same path, of continuing to allow me to live with unmanaged pain.

    I don’t have the luxury of giving up. I wish that my doctors felt the same.

  • Shoshana Lipson moderator author
    6 days ago

    We so completely hear you, and it is understandable to be angry with our doctors. I find myself trying to be positive and have a strong advocacy stand for myself, but also often get angry when things don’t go well. Please know that you are not alone and you are right, we do not have the luxury of giving up. Hugs! Shoshana – Migraine.com team

  • bluesguy
    2 weeks ago

    I totally get it, and agree. I also think that this recent war on opioids “for those who might need them some times” is ridiculous and shaming. Not all people get relief from NSAIDs, and some of us can not take them. It is nice to have an open minded physician who gets that migraine sufferers do need this level of pain relief, without having to resort to a visit to the E/R, or Urgent care. It also cuts down on actual health care costs to be able to receive some number of opioids to help us during our worst episodes. I know it has become a hot topic. But, I think it is important to bring this topic up.

  • Shoshana Lipson moderator author
    6 days ago

    There are many of us who feel as though the “opioid crisis” has gone too far the opposite way and is now not only over restrictive for those people who desperately need the medications but is also shaming. It’s a very hot topic and maybe the next one for my articles! Hugs! Shoshana – Migraine.com team

  • NeillK.
    2 weeks ago

    Excellent article thst defines how hard chronic migraines are to treat. I have had 19 years tried all treatments with no help. Its a devastating disease if you cannot find relief. Been to MAYO, several local headache specilaists. It can be overwhelming not having control of the migraines.

  • Shoshana Lipson moderator author
    6 days ago

    Thank you and yes, chronic migraine is very rough. There are many of us who appear to be treatment resistant or a combination of that and unable to take many of the meds because of side effects, and the result of that is overwhelming. We’re so glad you are here; know that you are not alone! Hugs! Shoshana – Migraine.com team

  • Peggy Artman moderator
    2 weeks ago

    @neillk,
    I agree, this is an interesting article that reflects how a lot of us feel. Its true that chronic migraine can be hard to treat. It is easy to just give up, but there are some new treatments that are supposed to become available this year. We have a supportive community here, so we hope you come back. ~ Peggy (Migraine.com team)

  • kateymac
    6 months ago

    This is EXCELLENT. I have to lay down now, with migraine, but had to say that. Hope to write more later!
    JUST PERFECT!!!!!

  • Shoshana Lipson moderator author
    5 months ago

    Thank you for the encouragement and I’m really glad you found it helpful:)

  • glassmind
    6 months ago

    Great letter and article. Thank you

  • Shoshana Lipson moderator author
    1 month ago

    Thank you! Hugs – Shoshana (Migraine.com team)

  • ChelsR90
    6 months ago

    This is truly a great article, I have struggled with this so much seeing how I’ve been through 17 different treatments and none of them help. My specialist that I went to before I lost my insurance was amazing he helped me so much even with just my mental state because of how positive he was. He at a point wanted to refer me to a pain management group in which I cried because I felt like there was no hope, when he seen my reaction he told me he would keep trying! He is the reason I am still alive today because I was at my breaking point, to see that he cared enough to keep trying, helped so much! Thanks for this article I dont want anyone to give up hope, i hope some doctors read this!

  • Shoshana Lipson moderator author
    1 month ago

    Thank you so much for your feedback and I’m glad my article helped you. Just thinking this through made me realize how long of a journey we go on with migraine, and how strong we are! Never give up hope!! Hugs – Shoshana (Migraine.com team)

  • j2jr5o
    6 months ago

    Thankyou Shoshana for your open letter it is so 100% correct and it also applies to our employers as well so the ones that can work getting. help and support from which is just as important !! i’m currently in the process of finding a new doctor and a new neurologist to find some answers and support . c

  • Shoshana Lipson moderator author
    1 month ago

    Hi! Thank you so much and I’m glad you liked the letter. You are so right – this applies to employers as well. I hope you ind a new doctor to get the support you need:) Hugs – Shoshana (Migraine.com team)

  • sapygirl
    6 months ago

    I HATE that folks may have to treat with doctors that go to lengths to help them. If anyone lives with chronic migraines in N.C., I overwhelmingly recommend Carolina Headache Institute in Durham (and promise they’d be worth a good distance drive). They spend @45 minutes with you (if you get botox), are incredibly knowledgeable, don’t milk you for their fee (surprisingly very reasonable for the length of time they spend with you), and very understanding. It can take a good while to get a new patient appointment but it’s worth it. I used to treat at “a MAJOR hospital in Durham’s” Pain Clinic and the comparison of the two clinics is like night and day in all aspects (also the hospital’s pain clinic charges @$8K for botox each time because they can add a hospital fee to the bill). Best wishes to everyone and it is so hard living with this!

  • Shoshana Lipson moderator author
    1 month ago

    Thanks so much for your recommendation! It’s always great to hear about good places to go for treatment. Hugs – Shoshana (Migraine.com team)

  • deedeevee1
    6 months ago

    Totally awesome!! I’m going to share this with my pain mgmnt doc. He’s totally on the cutting edge of research and technology and refuses to give up. He tolerates my whining and refusal to cooperate and “upset the apple cart”

  • Shoshana Lipson moderator author
    1 month ago

    Thank you and it’s awesome that you’re going to share this with your doctor! Never give up:) Hugs – Shoshana (Migraine.com team)

  • tonytoshiba
    6 months ago

    I had a great internal medicine doctor. She listened, paid attention and chewed me out because I wouldn’t see a doctor until I was past needing to be in the hospital. We worked together and my 80% constant migraine was reduced. I would have a week or two of peace. She retired, I didn’t realize how great she was until later.
    A few doctors and nurses then botox was introduced. Only a few migraines in a few months. Injections were on a 3~4 month cycle.
    Then I became disabled by Emphysema, things changed quickly and not for the better.
    I was getting injections and they were not working. It seems that the doctor decided a minute lidocaine would be injected instead of Botox. When brought to his attention he said he would not treat me because of my condition. He wouldn’t tell me my condition.
    I changed doctors as I am sure many of you have. We will continue and hopefully proceed.
    A nurse practitioner had me spray Capsaicin in my nostrils when a migraine was showing its ugly face. It worked well but I could no longer cook. I am a chef as a side line, no nose, no finesse or even good enough to serve.
    I now jar scotch-bonnet peppers. A bit of scotch-bonnet and the migraine runs with its tail between its legs. Hopefully this will help some of you. When you hurt your body sends out homegrown painkillers, internal opiates so to speak. Remember it is a chemical reaction and it is not actually burning you. A bit of buttered bread will pull the capsaicin pain away.
    Blessing, peace and may joy be with y’all.

  • Patricia7
    6 months ago

    Thanks for your honest and very powerful message! I think every person suffering with Migraines should give/send their doctor(s) a copy of this.

  • Shoshana Lipson moderator author
    1 month ago

    Thank you and I’m so glad you found it helpful. It would be great to give doctors this… hopefully it will help some of them think about the patient perspective:) Hugs – Shoshana (Migraine.com team)

  • Savta45
    6 months ago

    Dear Shoshana,
    Thank you for writing this. You have put into words what I, & I’m sure many, many other migraine sufferers have thought. This disease is so often difficult for medical personnel. There’s no blood test for it. No CT scan that shows it. All they can do is rule out other problems. It’s diagnosed purely on the history the patient offers. Different sufferers experience the pain differently. Some people actually ARE addictive personalities, & providers have to keep that in mind when prescribing pain medication.
    I think that, between all of the above, it gets overwhelming to them sometimes. That, & the somewhat limited options available to them as treatment modalities. Fortunately, there is progress being made on that front.
    All that said, however, I do agree with you, that very often, providers need to really SEE & LISTEN to their patients much more. There’s always a time constraint. But, use the time wisely. Use it constructively. Be there for your patient, even if what that means is commiserating & telling them that you & they are a TEAM, & they will NEVER give up on you! Brainstorm TOGETHER. Let the patient know that you are in their corner. It can make the world of difference.

  • Shoshana Lipson moderator author
    5 months ago

    When we communicate effectively together then it really can make a world of difference!

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