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Lightheadedness for 2 months

I am new to this forum, but not to migraines. I have had severe lightheadedness with a slight headache across my forehead (varying intensity) for the last two months. Some days it has prevented me from working & the only thing that helps is lying down. I've had migraines for 33 years, but this is not like anything I've ever had. They have now done almost every possible test now & have ruled out major things. They are thinking that I might have migraines without the headache. The pattern has now become consistent. I wake up in the morning with lightheadedness & it goes away around 1 or 2:00 in the afternoon. It seems like it gets worse or is exacerbated by movement or doing things up & down. They did do a tilt table & said I was fine although, I blacked out. But they said since I never blacked out completely before that they couldn't use that part of the test results. They have put me on Topamax & are gradually ramping up my dosage. It seems like something is helping this past week. I have been on the medicine for 2 1/2 weeks now & I had one day this past week without any symptoms! I am wondering if anyone has ever heard of something like this? I have been researching auras. I have had them in the past, but I guess I always thought that they were visual symptoms only so I'm not sure if I ever had them before with other symptoms. If it is migraines, I am trying to figure out what this new trigger is. A year ago, I had a complete hysterectomy & am not on any hormones, but have been taking an herbal supplement: black cohosh. If anyone has any thoughts, please share them! I would really appreciate it.

  1. Yep. I'm on week six of chronic aura without a headache. I was diagnosed with this seven years ago, and thought I'd gotten it under control but this last episode is kicking my butt. I have foggy thinking, clumsiness, slurred speech (when it's really bad), blah blah blah. I'm so tired of talking about it. Had to wait a long time to get into the neurologist, but finally got to see her yesterday. She said that there's no research going into treatment of this so she's going to treat it like it's a migraine. I'm now on topimate (sp?) as well. If this doesn't work, it's back to getting another E.E.G., etc. I haven't driven in over a month. I had to withdraw from my classes. I haven't been able to work. Typing makes it worse, but I hate the isolation. I tried everything I could to get it to go away. It just didn't work. I'm sorry you are going through this, but you're not alone. It's scary to have something that doesn't seem to be very common. I wish it were so folks would know what to do. I felt better just reading your post. I've been really sad the last few days. Hopefully, the medication works for us both.

    1. Thank you for replying, Foggyheaded. Seven years??!! Wow! That is hard to imagine. It really helps to know that there is someone else who has something similar. When they did your EEG before, did they find anything? I have been on the Topamax for 3 weeks now & I think it is starting to help. I still am having symptoms, but I think may be it is helping. I hope it works for you. They started me on a really low dose so I don't have side effects. They started me on 12.5 mg & now I'm on 25 mg. Eventually, I'll get to 50 mg. Have you had any "bad" episodes with worse symptoms? I have. They thought they might be seizures, but they ruled that out in the hospital when I had an extended EEG. Reading online, I am pretty sure that I have this migraine without headache. They had this as part of my diagnosis, but I'm not sure they are convinced yet. Have you found that you have any triggers? Thank you so very much for replying even though it hurts.

  2. To be clear, and hopefully ease your fears, I have not had a seven year long episode. I was diagnosed 7 years ago as having a migraine related disorder. I start the topomax today. The plan is to build up my dosage to 100mg a day. I'm starting on 25mg. My triggers are bright light, being in spaces with a lot of noise or echoes, sleep disruptions, looking at complex patterns (especially first thing in the morning).

    1. Well, that's good to hear! But that is a long time to have this condition even if it is on & off. How did it go with your Topamax yesterday? My doctor suggested having something to eat with it & also in the morning so I wouldn't get nauseated. It seemed to help with that side effect, but not the others.

      I am trying to figure out triggers for this. How did you narrow down your's? Especially the complex patterns in the morning? That sounds tricky.

      I hope you had a better day today.

      1. Migraines were the first issue I to deal with and still have. N ow my MS has taken over my life.
        One thing I have learned is a new symptom matters.
        Have it checked out. My dizziness started with my MS. It is not fun and can be due to many issues and medications

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