Help – Someone Stole My Brain!

I have been taking Zonegran (300 mg a day) for the last two years as a migraine preventative, and I must say that it has done a really good job. When I do have a break through migraine, I take Maxalt which works for me, with no side effects.

I am a 55 yr old female who has been suffering with migraines on and off since I was 18. I have tried all the usual migraine drugs on the market, acupuncture, biofeedback, get my vision and bite checked, massage, exercise, diet, sleep patterns — you name it, I will try it if means I would be migraine free.

The down side of Zonegran is that for the past two years I feel I have been in a “general state of dumbness”. I find it hard to concentrate at times, in a fog, difficultly in word-finding and become confused with lots of details. This is not a severe problem, it more of an underlying issue that just makes me look and feel slow or dense. I know I am a smart woman, I run my own business, and I can speak intelligently, but more often now I doubt myself, ask my husband for help, and have to write EVERYTHING down. I have 3 grown daughters and have asked them if they have noticed and they all said, YES! It hasn’t caused a huge problem yet, but I want my pre-Zonegran brain back!

I am secretary on a Board of Directors (this just started a few months ago) and this is when I really noticed I couldn’t even remember what was said just a few words ago and I am REALLY paying attention!

So my question to the group — Is there anything that will keep the migraine at bay without losing your memory? I am anxious to wean off the Zonegran, (under a Dr’s care) but scared of the on slot of migraines.

I have read from other bloggers about their memory loss and problems from Zonegran – (I was on Topamax for only 6 wks and it was far worse, I could barely remember my phone number or computer password!).

Thanks for your help! Lauren

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Comments

View Comments (12)
  • Laura Bagley Asher
    7 years ago

    The nickname for Topamax is Dopeamax, which is quite accurate. I take 200 MG Topamax, 360 MG Verapamil, 1500MG Relafen, 100MG Trazadone, 300MG Wellbutrin, 300MG Effexor, and 2 thyroid medications. I’ve had 2 surgeries on my neck so I have a 3 level fusion. I suffer from chronic daily migraines and nerve pain in my finger tips.
    I know that the medications are to blame for some of the memory loss and confusion, but for me the migraine and concussions are more of a factor. When my migraine gets worse I get the aura, hallucinate sounds and smells, get vertigo, and suffer from aphasia.

  • Janene Zielinski
    7 years ago

    The “Stupomax” made it impossible for me to continue the public speaking that is a big part of my career. I was only on it for about 8 weeks 5 years ago and yet never fully recovered. About a year ago I started on the Gluten Free diet even though I am not Celiac (just trying everything non pharm as a preventative). About 2 months into the diet I noticed the “fog” lifted a bit. I feel I regained about 25% of what I lost. It might be worth a try. I have no idea why it worked, but I am so grateful to have a bit of “recovery”. It is so embarrassing to be middle age and have people assume you are suffering from dementia. I used to love to teach and give motivational type speeches and now I cringe at the thought. Migraines have taken so much time from me, it is hard emotionally to lose memory and word recall as well. I miss the old me.

  • dshermjr
    7 years ago

    This story really hits home I am 30yrs old and used to work in power line construction, I’ve had migraines for the past 15 years and been on all types of medication. It seems that they are becoming progressively worse. I have been using Topamax 150mg a day for the past year or so, I still get attacks almost on the daily and all my neurologists wants to do is up the dosage. The scariest thing is, I know that I’m not crazy but I can definitely feel a difference in my focus, speech, and especially memory. It’s like living in a sandstorm in the dark. Small amounts of physical & memory exercises and lots of water seem to slightly help the side effects

  • Elaine Gross
    7 years ago

    Lauren, you’ve articulated the symptoms I too experience daily so well. I couldn’t have described it better. I however, take Topamax. I wonder if it’s the medication, or if it’s migraine symptoms. It is maddening and frustrating!

  • Boo Walker
    7 years ago

    I also have Hemiplegic Migraines as a result of a TBI. I have no idea how much better my mind would be without the Topamax and other meds; but with 2-3 episodes a week I don’t want to be UNmedicated and find out! I’m ok with lots of sticky notes and after 8 years I apparently haven’t forgotten anything life threatening (my husband still comes home every evening!).

  • April Kenney
    7 years ago

    Thanks for presenting this problem to the group.Thanks too Migraine.com! A big problem ~ we look fine! No one can see what we feel, and what these medications are doing to us, only what the effects are. Then we are unsuccussful at home, family in our careers and jobs. I have been on Topamax for a year and Maxalt since 2009, it is difficult to determine what side effects come from what drug. They make a huge difference in your life and career. We have to place so much trust in our MD and PA and often they do not know. Tired and mad at migraines and medications!

  • Tricia Lee Bond
    7 years ago

    I have suffered acute Hemiplegic Migraines for a year now. I have always had migraines but it was not till this past year that I started with the Hemiplegic. I did Topamax for 6 months 250mg a day. It tripled my symptoms. Now I am on a Calcium Channel Blocker, B2, Magnesium Sulfate, Fiorinal, Ibuprofen, and Zofran. This combination seems to be helping. I have 2 to 4 migraines a month and most of them last up to a week. My memory is very bad, and I think the worse was forgetting I had a son, and he is 23. I can’t think of simple words, nor can I keep a job. It is one of the worse things that has happened to me….

  • Lila Dobbs Padgett
    7 years ago

    I take propranolol(Beta Blocker) to prevent migraines. I still get the occasional one. I can usually feel it coming. I take Cafergot (cut in half) every hour until it has eased up. I also use ice packs at the base of my skull and on my forehead to cool the bloodflow and it helps.

  • Amanda Dawn Whaley
    7 years ago

    My doctor prescribed 400mg B2 daily for prevention of migraines. It has worked wonders for me. For those migraines that still break through the preventative, I use Imitrex.

  • Lana Smith Craig
    7 years ago

    Ive been surfering from migraines for 11yrs and I only take Maxsalt and I have no memory, spelling and keeping apts are the worst. And I also have to write EVERYTHINIG down!

  • Deborah Wisehart Wilton
    7 years ago

    I still suffer from memory problems since I was on Topamax. So instead I deal with the insufferable migraines on a daily basis.

  • Danielle Turney
    7 years ago

    The long term side effects from the pain medicine prescribed to me over the years, has given me the memory of a gnat. My son makes fun of me, but I can see him leave to walk her and 3 minutes later I get on him to walk the dog. I don’t remember taking my medication, who I talked to on the phone, people I have known my entire life and I forget names and events. It feels like I am getting alzheimers, but I know it is from my medication. If I don’t write things down in several places I forget: appointments, grocery store items, picking up my medication.

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