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Looking for answers, Silent Migraines-constant right side numbness

Hi!
I have been struggling with silent migraines for the past 3 years. Before that I had regular daily headaches, but for the most part I could "brush off" the pain. Three years ago I started to go numb in my hand. The next day I was numb down to my foot. That evening I was completely numb from my cheekbone to my toes on my right side. I also had muscle weakness.This lasted for 8 days. In that time my doctor believed it was MS. I had an MRI to rule it out. I started to pay attention to when the numbness would hit, as it was reoccurring regularly, and it was coinciding with my menstrual cycle as well as hot days. The neurologist I saw decided it was migraines, prescribed some meds and sent me on my way. The medication options I was given caused the same cyclical symptoms and a lot of side effects. I chose to stop taking them after 3 months. Since then I have been on Lupron to stop hormone production, and it seems to help the regular migraines, but as soon as we add back estrogen, I go numb again.

I guess I'm wondering if anyone else has experienced something similar. What was your formal diagnosis? Did you find a medication that worked?

I'm 32 years old and I really can't live in menopause without hormone therapy for the rest of my life, as my family has a history of osteoporosis, heart disease and dementia. The other thoughts some of my specialists have had are that it is related to an autoimmune disease, but that is being investigated alongside the rest of my ridiculous medical history.

If you made it this far, thank you for reading! I hope I can find some help. I'm not feeling very useful being numb all of the time.

  1. Hello JDSmith, thank you for sharing your experience with the community. I hear how disconcerting and frustrating these symptoms feel for you. While we cannot offer medical advice or diagnostics over the internet (for your safety!), what you are describing sounds similar to other members' descriptions of hemiplegic migraine. One of our contributors writes about her experience with this migraine variant. I thought this article, as well as some of her others, might be of interest to you:
    https://migraine.com/living-migraine/hemiplegic-migraines-what-are-they/
    https://migraine.com/author/kcrabb/
    Additionally, this article discusses hemiplegic migraine and menopause and the possible role of estrogen:
    https://migraine.com/blog/hemiplegic-migraine-menopause-what-happens/
    I hope this gives you a few things to consider! Please keep us posted on how you are managing. Wishing you a gentle day. ~Allyson (Migraine.com team)

    1. Thanks for your response! I had come across Hemiplegic Migraines when reading up on treatment options at one point. Unfortunately, the neurologist I was seeing has very little interest in giving a diagnosis beyond migraines. I think she was more engaged in the diagnostic process when she thought it was MS. I will continue to push my family doctor to find other options. It is very inconvenient to have muscle weakness and numbness for a third or more of every month!
      Thanks, again!

      1. It may benefit you to seek out a headache specialist, jdsmith -- not all neurologists are focused on the treatment of migraines, which might explain the lack of interest you're seeing from your current neuro (though I'm sorry you're being treated like that, it's not fair to you). Headache specialists do migraines all day long -- hopefully you can find one and make progress.

        Here are a few articles about headache specialists to get you started:

        https://migraine.com/blog/looking-for-a-migraine-specialist/

        https://migraine.com/blog/seeing-a-board-certified-headache-specialist/

        We're here to support you anytime you need it. Best wishes! -Melissa, migraine.com team

    2. Hi JDSmith,

      I'm so sorry you are going through all this. I understand how frustrating it is to not have a formal diagnosis.

      I would encourage you to seek out the expertise from a doctor who is an expert in treating migraine and headache disease as Melissa mentioned above. While general neurologists may be fine doctors, they have a hard time being experts in one area because they treat so many different conditions such as Parkinson's, Alzheimer's, stroke, multiple sclerosis, epilepsy and others.

      If I'm not mistaken, an MRI isn't the only tool used to diagnose MS, a spinal tap as well. We also have a sister site, Multiple sclerosis, that may be helpful; https://multiplesclerosis.net/.

      Please keep us posted,
      Nancy

      1. Thank you so much!
        I have contacted my family doctor. He has sent a referral to the headache specialist in our community. Unfortunately, we are looking at 1-1.5 years before I will see her unless there is a cancellation. I am also seeing a hormone consultant to make changes to my current estrogen add-back.
        It is frustrating to not have more information, but I think a lot of my frustrations are due to other health issues. Last year I was seeing a specialist about a shoulder injury. An MRI uncovered a tumour in my clavicle bone. After 1 year of MRI, CT, Bone scan and a bone biopsy, we still don’t know what it is. I’m sure we will get all things sorted out! I just need to be patient...or keep myself busy...
        Anyway, thank you!

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