atypical complex migraines with seizure like activity

Rebecca Ann Community Member March 31, 2011
  • For about 6 years now I have had the diagnosis of atypical complex migraines. My migraines are painless and present initially with nausea followed by heart palpitations, numbness in my fingers and lips and then convulsions. The convulsions are violent and mostly involve my upper body and anyone who has seen me during one of these episodes swears I am having a seizure (even a neurological physician's assistant). After the convulsions stop I have normally right sided paralysis and loss of speech for several minutes. The convulsions can last 20 minutes up to over an hour. Valium is the only thing that works to stop the convulsions and I'm on Lamictal which has greatly reduced my number of migraines. My EEG findings are normal and I'm scheduled for a repeat MRI of my brain but that has been normal in the past as well. I simply want to know that I'm not the only one out there with this bizarre combination of symptoms. Is there anyone out there with migraines like mine? I've read about hemiplegic migraines but it doesn't mention the convulsions. 

6 Comments
  • edtheduck44
    Oct. 27, 2014

    hi ya , i am just looking into aspects of my own life at the min because of suffering from migraines and convulsions , i at times would faint but other times i would have seizures , my fingers on my hands would all come to a point , tried to find out why and got a few things that i thought would explain some of it , in my case before i got the headaches i was...

    RHMLucky777

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    hi ya , i am just looking into aspects of my own life at the min because of suffering from migraines and convulsions , i at times would faint but other times i would have seizures , my fingers on my hands would all come to a point , tried to find out why and got a few things that i thought would explain some of it , in my case before i got the headaches i was about 6 or 7 , i was helping my mum at the time who had ms , the washing was done and she tried to get the plug out of the socket and couldent because she dident have the power .

    i ran to the kitchen got a knife ... yes i put it behind the plug before she could say noooo , zap i got a shock right up my arm and had a fuzzy head .

    putting 2 and 2 together i think now it affected my whole life ..now 49 . my thinking was that wrong signals were coming from the brain and the wiring was confused by sending signals that their is something attacking your body and the convulsions are the way it reacts , might be different for you but i think thats what happened to me .

    now that im able to focus on it im going to find out more so will come back and give an update .

  • Anonymous
    Brittany Vigil
    Mar. 06, 2014

    I've had the same thing since I was 10 except when I lose consciousness I clench instead of convulse. Doctors always said nothing was going on and I was finally diagnosed with epilepsy in 2012 but my eegs are all normal,  ct scans normal. Had my thyroid checked as well. still not 100% sure what's going on. Let me know if they figure anything out that helps...

    RHMLucky777

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    I've had the same thing since I was 10 except when I lose consciousness I clench instead of convulse. Doctors always said nothing was going on and I was finally diagnosed with epilepsy in 2012 but my eegs are all normal,  ct scans normal. Had my thyroid checked as well. still not 100% sure what's going on. Let me know if they figure anything out that helps with the symptoms because they rule my life. I've been on Keppra for 2 years but trying to get off because it's hell. Good luck! 

  • Nancy Harris Bonk
    Apr. 02, 2011

    Hello, and welcome to MyMigraineConnection.com!

    Those sound like some pretty scary symptoms, especially when you don't know what it going on. And it's been going on for six years, you poor thing. I'm pretty sure you are not the only one with sypmtoms like this - but it can feel very isolating, can't it? Let's see what we can do to help you out, ok?

     ...

    RHMLucky777

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    Hello, and welcome to MyMigraineConnection.com!

    Those sound like some pretty scary symptoms, especially when you don't know what it going on. And it's been going on for six years, you poor thing. I'm pretty sure you are not the only one with sypmtoms like this - but it can feel very isolating, can't it? Let's see what we can do to help you out, ok?

     

    "Atypical complex Migraine" is not really an accurate diagnosis - it may be more of a descriptive term meaning more complicated or "complex" than other Migraines. The International Headache Society's International Classification of Headache Disorders, 2nd Edition, (ICHD-II) is considered the gold standard for diagnosing headache disorder. It is all a bit complicated, and Teri does a great job of explaining it in this article; What Is a Complex or Complicated Migraine?

     

    It may be time to reevaluate your diagnosis. You see, it is vitally important to have an accurate diagnosis so you can get the best treatment plan, have the best quality of life and learn all you can about your disease. So, if your current doctor is at a stand still, and I see you are seeing a neurologist, maybe it is time for a new set of eyes to take a look at you. This may mean seeing a Migraine and headache specialist. An important note here* It's important to note that neurologists aren't necessarily Migraine and headache specialists.**

     

    You can think of it like this: When a pipe under your kitchen sinks breaks you call an experts to fix it - a plumber. You could call a handyman to repair it, then fix the drain, the cabinets and paint the room if needed. But he's not the "true" (although a fine worker) expert you need for your broken pipe. Neurologists may be fine doctors, but aren't experts in any one area because they treat so many different conditions like MS, stroke, and epilepsy. A Migraine specialist is the "true" expert who only treats one condition - ours - Migraine and headache disorders.   

     

    There are a few types of Migraine sub categories from the ICHD-II. These include Typical aura with non-Migraine headache and typical aura without headache that have to be fulfilled before the criteria of Migraine-triggered seizure is met. I'm not suggesting this is what you have, rather, something you may want to discuss with your doctor?

     

    Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

    We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

    Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, http://www.MyMigraineConnection.com. Under the Find, Manage, and Connect tabs at the top of each page, you'll find a wealth of information - educational articles, tips, quizzes, workbooks, support and advocacy information, and more.

    Do you have questions about Migraine? There are three ways to get answers - through our Ask the Clinician column, in our community Question and Answer Section, or through our forum.  Just go to our Migraine Answers page HERE.

     

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    Welcome again,

    Nancy Bonk
    MyMigraineConnection.com Community Manager

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  • Cris1971
    Apr. 02, 2011

    Hello,

    The begining of last month I started having something similer to what you have experienced. My eppisodes were triggerd by my normal migraine triggers. Strong smells, loud, and reptitive noise, bright or flashing lights, getting over heated. My eppisodes go something like this. When I feel it coming I get one or a combination of the...

    RHMLucky777

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    Hello,

    The begining of last month I started having something similer to what you have experienced. My eppisodes were triggerd by my normal migraine triggers. Strong smells, loud, and reptitive noise, bright or flashing lights, getting over heated. My eppisodes go something like this. When I feel it coming I get one or a combination of the following.

    1. My body feels tingly 

    2. I get dizzy

    3. My ears start ringing

    4. I have a strange distortaion feeling in my face, like looking at a fun house mirror.

     My heart pounds, I get weak, my legs go out from under me, and I collaps. My breathing gets rappid, I loose motor funcion, depending on how long it lasts I loose feeling in my limbs. I can't support the weight of my head. My head is hot, and my body is cold, my fingers and toes turn blue. I cant talk. After its over I am very week and its hard to talk,and I get emotional and confused. At first I was very scared and I would get panic attacks along with the eppisodes and feel like I could not breath.

     

     I would get between 15 and 20 a day for about 2 weeks. I was in the ER 4 times in a week, the Dr did a CT scan and it came back clean. They said it was not a seaziure because I stayed consious through out the eppisode. I had a very bad experience at the hospital, first they thought I was a drug seeker, them thay said it was "Transference". Basicly they said I was not handling my stress, so my body was expressing the stress with strange neuological symptomes.

     

    My Ciropractor said that my skull was out of alignment and was pressing on my temperal arteries, constricting the blood flow to the front of my brain. After I was ajusted I felt better but my skull would not stay in place. I felt like I need to live at my Ciropractors. The Dr did not take any of that seriously of course. I am so glad you posted this because the Dr's almost had me beliving that I was crazy. I know we do not have all of the same things, but it is verry similer.

    • Rebecca Ann
      Apr. 02, 2011

      I'm sorry to hear about your attacks but if this is a variety of migraine it is so hard to get the diagnosis and even harder to be taken seriously in my experience. When my attacks first started, I was in ICU for several days while they tried to figure it all out. I was on valium to control the violent tremors and a pretty well respected neurologist here in...

      RHMLucky777

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      I'm sorry to hear about your attacks but if this is a variety of migraine it is so hard to get the diagnosis and even harder to be taken seriously in my experience. When my attacks first started, I was in ICU for several days while they tried to figure it all out. I was on valium to control the violent tremors and a pretty well respected neurologist here in town came in and told me it was all in my head and I needed to see a psychiatrist. I was heartbroken. One to be dismissed like that and two to think that my mind could be doing this to my body. 

       

      I did finally find a neurologist who took me seriously and gave me the diagnosis and got me on Lamictal to control my attacks. I have only the occasional breakthrough now but have never figured out the triggers. When I end up in the ER (as was the case this week) my issue now is with the nurses, who think I'm faking it. I have had them physically hurt me by doing sternal rubs or putting sharp a sharp object under my fingernail to see if I'll stop shaking or they threatened me with sticking a catheter in my bladder if I didn't stop shaking. I am totally aware during my attacks and can hear everything. When I was able to talk again I was screaming and cursing at these nurses (this was on two separate admissions) for being so mean. I have complained to everyone possible and carry a letter on me at all times about my condition, I have telephone numbers on me of people that can explain my condition but still I run in to people who think I'm a drug seeker. Sometimes that seems like the most upsetting part of it all. It's bad enough I get rushed to the ER in an ambulance or have an embarrassing attack of convulsions in front of a friend or coworker but to then be mistreated by nurses is devastating for me. 

       

      Have you had an EEG? Even though you stay conscious throughout the event/attack/whatever you want to call it, there are so many varieties of seizures that they may want to do an EEG. I hope I've helped in some way, if only to let you know there is at least one other person in the world who has something similar. I hope you can find a neurologist who takes you seriously and can get you on some medication to control your episodes. How many a day are you having now? You said this just started recently? How are you living/functioning right now? In the beginning mine were also every hour or two or back to back. Please keep me posted and hang in there, I really hope it will get better soon. 

       

       

    • Cris1971
      Apr. 02, 2011

      They did talk about an EEG, but decided not to one because they said here was no way I could stay conscious, if it was a true seizure. They put me on Depakote, but stressed the mood stabilizing effect, and told me it was not because they thought it was a seizure. Now I am not saying that I dont have stress, anyone with a cronic illness has stress. I have...

      RHMLucky777

      Read More

      They did talk about an EEG, but decided not to one because they said here was no way I could stay conscious, if it was a true seizure. They put me on Depakote, but stressed the mood stabilizing effect, and told me it was not because they thought it was a seizure. Now I am not saying that I dont have stress, anyone with a cronic illness has stress. I have been seeing a counsler weekly for almost 5 months, to get help with coping stradigies, and over all support.  When I told her what the Dr's said  she told me that "Transferance" was a "easy out" for them. She said with everything I am going through, I am handling things as well as could be expected.

       

       I have a great Husband, wonderfull family and friends, my brother who is a EMT came down and stayed for 3 weeks. My Mother in law takes me to my Dr appts. Support through my Congregation, at least 3 days a week some one comes over when my kids are out of school and helps out with homework, house work and meals. When my eppisodes were really bad, they would come over 9:30 every morning to check on me.

       

      My Dr was out of town while all of this was going on and I know that is part of the reasion everything was so crazy. I saw 7 diffrent Dr's.

       

      How am I doing now? Its hard to explain, My eppisodes felt exactly like my regular migraines only 10 x worse.

       

      I am sensitive to light and sound, insted it is so bad I cant even flush the toilet because it is too loud.

       

       I normaly get slured speech, insted I cant talk.

       

       I get weakness, insted I am so weak almost paralized.

       

      My hands get cold, insted they turn blue.

       

      My head is hot, insted it is on fire.

       

      I get dizzy, insted I feel like I am going vey fast on a mary-go-round.

       

      I get Tenitius, insted I sounds like there is a hive of angry bees in my head.

       

      I can feel my heart beating, insted my heat pounds like crazy, at one point I was sinus tachicardic.

       

      I started feeling better about 2 weeks after it started. Now they are not as severe, 3/10, and I only get a few a week. I think it was a combo of things that set my migraine into OVERDRIVE. Stomach flu, dehidration, low blood sugar from not eating becausing of the stomach flu. Mold exposure, and allergies hitting all at the same time. And just this morning I realized I had stopped taking my suppliments for a heavy metal detox about a week or so before this hit.

       

      My Husband got me a very nice air filter that seems to really be helping, I am trying to stay hydrated, and eat every few hours. I think the Depakote is helping, my Dr wants me to give it another month to see how I do. I just hate reading the warnings. So far I seem to be handaling it well, no bad side effects.

       

       I am coping. I can't drive and that is very hard on me, I get rides for my Dr appt 2 days a week. I have basicly been in bed for the last month. But at least I can go to the bathroom on my own, and shower without someone watching me to make sure I don't collaps. It has made me appreciate the freedom that I do have.

       

      I really want to see a headach specialist, but I just dont have the money right now and I am afraid of spending $400 for a Dr who might just want to give me more drugs.

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