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Pre-appointment jitters and sadness about how my headaches affect my husband

I've had bad headaches since a series of TBIs in 2016. Though I think I've healed completely from the TBIs the headaches still last triggered by stress and pressure changes mostly.

I have a neurologist appointment this Thursday and I'm really nervous and scared for it. My husband is going to come with me because I'm scared and also have trouble processing and understanding especially when stressed as I know I will be in the doctor's office.
The last neurologist I saw was in NYC in 2016/2017 and through she was really nice/I liked her she misdiagnosed me with a brain bleed. And didn't give me any treatment opinions for the headaches besides pain killers which I decline to take and appointments for multiple MRIs and with a brain surgeon. So I guess I don't have a hope for the neurologist offering me anything helpful.

Unfortunately I now live on a small island with limited services which makes getting treatment hard. For example, it took 6 months to get an appointment off island with a neurologist. I'd like to try manual therapy (I've heard good things about active release therapy) for my neck and sacrum because I think that might help but atlas there isn't anyone on this small island. I seems like all alternative therapies I've heard about are either off island and/or too expensive. Just discouraging...

Also, I really, really struggle with the negative affect my headaches have on my husband. I just feel so badly for him. He has to carry more than his share because I'm often in pain. It has lead to him often resenting me and getting short and easily annoyed with me when I'm in pain. And then I get frustrated with him because he is annoyed with me and I'm in pain and have trouble dealing.

  1. Hi Emiknott - Thanks for posting and sharing what you've been going through. I'm glad that you found our forums and were able to post. We have some information on post-traumatic headaches that may be a helpful read, which you can check out here: Hopefully your new neurologist will be able to help you get to the bottom of your headaches and figure out the underlying cause. It sounds like meeting with your first neurologist was pretty disappointing, but there's hope that this 2nd appointment could really work out 😀.

    If you are looking for some resources to prepare for your doctor's visit, here are some resources: and If you need more resources, let us know, and we can see what we have!

    I also think it's understandable that your migraines are affecting your relationship. This is not entirely uncommon to hear. Chronic illness plays a big role in our life, and it can be difficult to manage our illness and the relationships we have with other people. Here are some of the articles we have related to migraine and relationships:,, and Check those articles out and see if any of them resonate with you.

    Keep us in the loop on how your appointment goes, or if any of these resources are helpful. We're here for you! - Cody (Team Member)

    1. Thank you so much Cody. Those are some really helpful articles to be sure. I really appreciate your comment. My appointment got rescheduled for a winter storm. My new appointment is April 27th but I am on the wait list so might be able to make an appointment earlier is someone else cancels/reschedules. I'm definitely relieved I don't have to deal with it this week and thankful for these articles when I do. The articles about relationships are helpful and a good reminder that other couples go through this. Thank you! Happy to have found this community and all your resources!

    2. You're most welcome! Happy to hear that they were helpful 😀. Fingers crossed that your appointment will be moved up soon, sometimes being on the waitlist can really help. You never know!

      I'm also glad to hear that the articles on relationships were helpful. I know it can feel very isolating sometimes, since not a lot of people talk about migraine in general...let alone how migraines affect their relationship. But it sure does! And there are ways to make the impact of migraine more manageable together as a couple, mainly through a lot of open and honest communication.

      In any event, so grateful you've decided to join us. Feel free to post or direct message any time. See you around the community,
      - Cody (Team Member)

  2. Hi @emiknott,
    I hope things go well at your appointment, and that you get both answers and relief. I wanted to share some articles that may be helpful to you in maximizing the time you have with the doctor:
    You may find utility in many of the articles, but some highlights might be:
    How to Advocate For Yourself at the Doctors
    Five Questions With a Neurologist and Migraine Expert

    See how you feel with this doctor. We do have some resources to help you connect with a migraine specialist. Please keep in touch and let us know how it goes. Wishing you good news! -Warly, Donna (team member)

    1. Thank you so much Holly! Could you send the link for the article you mentioned? Sounds very helpful.

    2. Oh gosh, so sorry- here it is: Thanks for your patience and for following up. Please let us know if you have any questions related to this or anything else. Warmly- Holly team.

  3. Im going through the same thing except different illnesses of migraines and chronic fatigue and anxiety and depression. My husband has chronic pain and we get really irritable with each other and have threatened to split up or at least get our own house and visit each other.
    It's currently very calm but give it about 2 weeks and it is back to crying.

    1. yes i agree. Im a big animal lover and i try think of it as a non suffering person trying to understand what it feels like to be a house cat or a dog.
      It was just most hurtful for her to say I'm "enjoying wallowing in sympathy". This conjures up images of a pig rolling around in mud. She said other things like she was very know it all and authoritarian and in charge.
      Ive decided to forgive her but i agree that I'm done with being around toxic people.
      Im 64 now and many of the best friends over different time periods like high school my 20s have passed away. Many of them died in their 40s and 50s not from drug overdoses or anything but illnesses. Its caused me to have sober thoughts about the shortness and preciousness of life and im not willing anymore to tolerare abuse. Thank you for listening. Thank you for having kindness insight and understanding.

    2. all good analogies. What your friend said about wallowing is especially hurtful given that people with migraine are desperate NOT to feel this way and spend our lives fighting the pain, not succumbing to it and definitely not wallowing. While we may experience windows in which we feel exhausted and even hopeless about this relentless disease- that is very different from wallowing.
      I agree that the appreciation that life is both precious and short increases with age and seeing others pass too young. That understanding definitely can bring a clarity around the importance of letting go of relationships or occupations that no longer serve us.
      You’re ahead of me in the wisdom and life department by a decade so I’m extra grateful to you for sharing your lessons-learned with us. So glad you’re a part of this community. Keep your wisdom and thoughts coming! Warmly- Holly team

  4. How have things been going for you since you posted this discussion? I hope that you have been able to find a neurologist and are working on some treatment progress. Let us know if there is anything we can do for you. - Amanda W (team member)

    1. I 100 percent agree. The idea of going into a doctor’s office stopped me for many years of going to the neurologist. Neura health has been amazing, I was able to see a top rated neurologist for migraine disorders within a month of signing up. And I’m able to make all my appointments online. It’s been an amazing experience. So thankful I found it.

    2. Thank you for sharing your positive experience with Neura Health! I've heard wonderful things about them. I hope you keep us posted on your progress, Nancy Harris Bonk, Patient Leader/Moderator Team

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