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4-months of near-chronic "silent" migraine/ history of hemiplegic migraine

  • By GoodyearSusan

    Thank goodness for this site. I feel like such a complicated case and I feel all alone: I am a 50-years old woman. 2 years ago I was hospitalized for nearly 2-weeks with TIA symptoms (I do have significant stenosis of my middle cerebral artery) BUT in retrospect we think were hemiplegic migraines. No history of migraines but visual disturbances. In January of this year, I had what I now believe was an aura (I went to the ER as it was so pronounced…and new) and from that day forward, I have not been the same. I had to wait 2 months to get into a new neurologist and in the those 2 months, I was unable to get back into a daily routine. I was unable to get up every day and go to work, my brain was “not working right,” I would feel somewhat okay one day, but unable to function most days. I finally saw a neurologist who said “complicated migraines” which made sense and would explain all of my visual disturbances and numbness in my hand and face, etc. I simply feel horrible most days and can’t push myself no matter how hard I try. I have had some bad headaches on some occasions, and I typically have an underlying dull headache all the time, but mostly I just feel horrible and the only thing that helps is to lay down and sleeping also helps.

    Has anybody had prolonged aura for over a month??? I am taking 120mg of Topamax (upped to 150mg a couple of weeks ago) for 2 months now and it is not helping at all. The neurologist who diagnosed me is so hard to get into and I won’t see him again until nest week. My regular doctor put me on a round of 6-day steroids and that was the best week I had (last week), I almost felt normal. But within 2 days after finishing it, I am right back to feeling horrible and being in bed all day. I own my own business but I am not even able to work for the past 2 months. I went to a 2nd neurologist, but he is not helpful at all as he only wants me off the Topamax and onto Propranolol (I am also taking 20mg 2 times per day). Every time I tried to wean off Topamax I just got worse. I do not think this 2nd neurologist understands complicated migraines at all. The really good neurologist that I will see next week is retiring and I found a great one that will understand my complex case, but no opening until August 🙁

    I have literately had symptoms for 4-months now to the point that I can’t even return to my daily routine. HAS ANYBODY ELSE EXPERIENCED PROLONGED “SILENT” AURA SYMPTOMS LIKE THIS and GENERAL FEELING CRAPPY WITH EVERYTHING TAKING MAXIMUM EFFORT??? I had visual symptoms for months and then I had severe sensitivity to lights and I could not even look at a computer screen for a week and a half. Also had sound sensitivity. Never had either of these before in my life. Sensitivities are better now, but it seems like the cycle is starting all over again after taking the steroids…. I CAN’T WAIT TO SEE THE GOOD NEUROLOGIST. ANY HELP OR ADVICE APPRECIATED, THANK YOU!!

  • By GardensatNight

    Really sorry this is happening to you. I have not experienced exactly what you are describing. I do have chronic extreme sensitivity to light and sound (never gets better). Steriods also temporarily helped me, but of course, you can’t stay on them, and as soon as I came off, poof.

    You mentioned the screens being hell. If the problem persists, know that they DO make computer screens that do not emit light, and do not flicker (the two things you have to watch out for) for people with really bad photophobia. One is by Dasung and called Paperlike. The other I’ve tried is by Boox and called Max2. The latter is even a touchscreen and can do all sorts of stuff.

  • By Supermum

    hi its good to find someone thats having the same migraines as me.Mine has been going on untill the 14th of june my symtoms were as just as you would get when having a stroke so i rang fo an ambulance they took me to hospital saying it was a hemaphilic migraine & sent me home a few days later i was no better so i went to the doctors & he sent me for a head scan that was all ok but because im still getting the symtoms im being sent for another scan on my head & spine.

  • By Supermum

    If you don’t mind I would like to add you to my friends list because I really need someone to talk to xx

  • By boldmaz

    Hi there,

    Would it be possible for you to add me as a friend?

    I have had almost complete vision loss in my right eye for nearly 3 weeks now and could really do with chatting with someone with similar symptoms.

    Thank you

  • By cmac80

    I have all the exact same symptoms.. it’s making me feel like I’m going crazy!! The only thing my neurologist gave me for it so far is a list of supplements which seem to have helped decrease the over all intensity of it but I’m still all kinds of messed up! Today my right side of my face and neck and ear have been numb which is a new symptom for me. I have been dealing with this since November and it’s now the end of March… going for an MRI next week but otherwise I’m completely clueless when it comes to any of this. Nobody understands what I’m going through.. it’s a lonely disability.

    I also got a pair of non prescription glasses with a blue light filter on them which help alot for when I’m out shopping or having a really bad day.

    Your post is the 1st time I have heard of anyone with the same symptoms as me.. you have helped ease my mind and now atleast I know I’m not imagining all of this!!!

  • By beachbumgirl

    Goodyear Susan,
    I’m so sorry for what you have been through.
    1) good to find a Headache Specialist, a neurologist
    Is not a specialist who just studies headaches.
    2) see your primary doctor for a checkup. Let he/she
    Order a ct scan and /or MRI if necessary. Then let them
    Discuss your fibromyalgia symptoms and treatment.

    I hope you are feeling better in a jiffy!,,

  • By Charis4

    I’m not 100% sure that what I have going on is migraine, but I’m having a lot of the same symptoms! I’m a 38 yo mom of 6, and competitive amateur cyclist so normally very healthy. I’ve had 3 episodes of symptoms since last August (currently end of March) that take a week or two to ramp up, then I’m a mess for 2-3 weeks, and then it takes about 6 weeks of slow improvement before I get back to normal. A couple weeks of feeling fine and then it starts all over again. In retrospect, I had one episode of it in each summer, 2017 and 2016 also.

    My symptoms are severe fatigue, cognitive problems, right side weakness, motor problems, and nerve pain in my hands and foot. I get a strange sensation on the right side of my head, but it’s not painful. I do get pain in my right eye, like eye strain from looking at the computer too long. My senses are on fire, I get overstimulated by *everything*. I get GI upset with each episode that resolves as the other symptoms do. I’ve been having trouble swallowing, I choke a lot. I get strange electric zaps on my body. I see after images of everything high contrast, even if it isn’t an actual light. My symptoms are there first thing in the morning, but they get steadily worse until evening then usually get a bit better before bedtime.

    I’ve seen a couple neurologists, trying to rule out MS. The newest one thinks it’s a chronic migraine disorder. I’ve had 2 hemiplegic migraines with aura (one in 2014, one in 2017), which did effect my right side, but the visual symptoms, etc, nothing else is the same.

    This new doc just started me on memantine as treatment for migraine. We’re going to give it a few months then if not better, so a spinal tap and another MRI (I’ve had 2 clean scans, but they were on low powered open machines) to fully rule out MS. I’m skeptical that it’s migraine, but this doc seems certain. I very much hope that he’s right, migraine is better than MS at least, and hopefully the meds work. I’ve only felt normal for a few weeks out of the last 8 months. I’m hardly able to take care of my kids and I’m not safe to drive much of the time.

    Anyone else have experience with this kind of thing?