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Silent Migraines??

Hi all. After a year of waiting I finally got to see a Neurologist. I have a very complicated medical history that still exists. To just list the major 3, I have Mitochondrial Disease, Antiphospholipid Antibody Syndrome and Gastroparesis. I just got my 2nd feeding tube removed in October. Fingers crossed I can maintain my weight and don’t have to get it put back in. Okay, enough backstory…

I have had migraines and one major hemiplegic migraine where I lost the ability to speak and couldn’t feel one side of my body. I didn’t have a headache though. We instantly thought I was having a stroke due to the APS as it causes blood clots for no reason. I was hospitalized and told I had a hemiplegic migraine.

I have other neurological things going on as well. I do get migraines. I recognize those quickly, but I will have my left leg go numb and won’t be able to lift that foot and afterwards there will be a numb spot on the inside of my knee for 2 days - 2 months or longer. My hands will start getting numb and tingling. I’ll have breakthrough depression where my meds all the sudden aren’t keeping my depression in check. I will loose all sense of balance and can’t stand at all. If this happens when I’m already standing I have to grab whatever I can or just drop to the ground. I will start to stand up and will fall back down because I don’t have the equilibrium to remain upright. I have trouble with my speech some days. I’ll start to speak but instead of the words I’m thinking just jibberish comes out.

The Neurologist said all of these things are migraines. They are silent migraines. She gave me Nurtec to take. How do I know when to take it if I don’t have a headache but I have a silent migraine that’s affecting me? I’m so confused. I’m having at least 3 headaches a week. I do think they are migraines. The Nurtec does help with those. Anyone else have these “silent” migraines that can shed some light on this for me? *I’m a huge stroke risk and I’m afraid I’ll have a stroke one day - have had 2 mini’s already - and just dismiss the symptoms as a silent migraine.

  1. , you have some pretty significant challenges with your health conditions. Thank you for sharing what you are experiencing. I understand that silent migraines can mimic mini-strokes, so I understand your concern. Has your doctor prescribed Nurtec to stop a migraine at the time you notice it coming, or has it been prescribed as a preventative? It can be taken for prevention every other day. My husband has been on that regimen before. Now, he uses it as an abortive. Here is a link to an article that covers the basics of silent migraines.
    Migraine has so many different symptoms. It can be hard to figure out what is migraine-related versus another condition. Many conditions we have with migraine also overlap with their common symptoms. I encourage you to keep following up with your treating doctor to ensure you get the most appropriate care. Your unsteadiness also makes me think of a friend of mine who suffers from vestibular migraine, although you have not mentioned a spinning sensation. I hope this helps a bit. We are here if you need support or want to vent! Let us know how things are going with you moving forward. Warmly, Cheryl team

    1. Thank you for your reply and link. The Nurtec is only for abortive. Given she thinks I have silent migraines I would think I would need something preventative. I will check with her on that. I am hoping to get more clarity moving forward. Have a great day.

      1. Thank you for sharing your journey with us. I understand your concerns and confusion, I would feel the same way.
        I'm sorry it's taken so long to see a neurologist. Here's the thing when we are a complicated case (same here) it's probably a good idea to see a true expert who treats migraine and headache disease. General neurologists may be fine doctors but have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. Many general neurologists who treat people with migraine and headache disease claim to be experts but that may be truly be accurate. A true migraine expert is board certified in headache medicine that not all neurologists have, and treats migraine and headache all day, every day. Here is more information on why these doctors are beneficial and where to find them;

        Nurtec can be take both as prevention and to stop an attack. The thing is if you are having three attacks a week, it's time to discuss migraine prevention. Please know we're here for you. Will you let me know what you think? I'm sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Team

    2. Thank you for all of the information. I read all of the links. I don’t feel like my symptoms completely line up with all migraine, silent migraine or cluster headaches. It’s as if I have a few symptoms of all of them thrown together. The only thing I know for sure is whatever type I have it isn’t controlled. Right now I go to bed with a headache and wake up with a headache then deal with a headache along with other symptoms all day long. It’s starting to affect my personality. I’m not a moody person at all. I’ve been dealt a really rough hand health wise but I try to not let that spill out into my personality. However, since Sunday I can’t stand to hear anyone talking, I don’t want anyone around me and it sounds like my husband’s voice is amplified x5. He keeps asking me if he’s upset me or said something wrong and I tell him no I’m just in a really bad mood but can’t explain why. I take meds for depression but this doesn’t feel like depression. Maybe it’s just my body saying “make my head stop hurting constantly because it’s really irritating me.” My Neurologist is supposed to be a headache specialist and I was actually “upset” when I saw that was her specialty because I thought I was seeing a Neurologist for all of my neurological issues. She wants a brain MRI so she’s arm wrestling with my insurance to try to get a MRI approved. I wished her well on that. I have so many Specialist and each one is going to tie any symptoms I have to their specialty so I’m a “everything but the kitchen sink” patient. I’ll post with any updates or changes. I’m glad to have found a community who understands the challenges I’m facing.

      1. I'm sorry to hear that you're struggling to get an accurate diagnosis and that the pain is impacting your mood and therefore your relationships. It's understandable and all too relatable to so many of our fellow community members here.

        I see that a lot of resources were shared with you on finding a doctor, and hope that they're helpful.

        Because you mentioned the impacts on your mood, I also wanted to share with you some articles around mood that you might find helpful, or relatable. As always, take what resonates and leave what doesn't.

        And yes, please keep us posted on your progress as you feel comfortable doing so. We're thinking of you and here with community support!
        Alene, moderator

      2. I am so sorry to hear that you deal with all of this. I know a few with Mito and Gastroparesis. I have Gastroparesis myself along with autonomic dysfunction, mast cell activation syndrome, EDS and a few other issues. I know for me, I get alot of symptoms from all of these things acting up at one time. Having so many issues that are complicated, is hard to treat. I get told that I am complex almost weekly, it seems. I do have a friend with Gastroparesis who gets hemiplegic migraines all the time. She has been put in ICU on numerous occasions because they thought it was a stroke, but in the end, it is always migraine related. It can be hard for doctors to figure it out too. I do think that preventing is better than treating once it is there. If you are not on a preventative, I would talk with your current provider about what would be the best one for you, being so complex. I hope that you find a solution soon.
        P.S. Congratulations on getting your feeding tube removed. I have had a j, gj, and now a g tube for venting, plus, TPN. Have a wonderful week!! (Tonya, contributor).

    3. Thanks everyone! I was just informed, not by my doctor, by the company who approves or denies MRI’s that my MRI was denied. I only found out because I need a emergency MRI because there’s a chance I have breast cancer. 😭 I don’t know how my body can handle much more. I received a same day phone call from this company telling me that MRI is approved and I’m getting it this week. I asked about the MRI of my brain and they told me it was denied because I needed to have had either a hemiplegic migraine, migraine with aura, aura without migraine or migraine causing neurological symptoms. I said I have all of those. He said your doctor can appeal. I received a letter in the mail yesterday with a detailed description and the MRI was ordered for just a headache. 🤦‍♀️ I definitely know I have a doctor who doesn’t care about me or who will fight for me.

      I had called her office 2 weeks ago because I was having horrible migraines with neurological issues daily. Her only response was to take Vitamin B2 because that helps some of her migraine patients. At this point I don’t think she believes me. I document every migraine and what I was doing leading up to it along with all of my symptoms. I feel like I’m doing my part as a patient. Neurologist in my area are limited therefore the 1 year wait to see one. I have a much bigger issue to address at the moment and hopefully it will be all clear then I’ll come back to this battle.

      1. Thank you so much.

      2. Thank you. My frustration was that my neurologist requested it for just a headache instead of taking the time to code it correctly and it would have been approved without issue. I’m thankful the Nurtec does work once I get a migraine but I would love a preventative.

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