Forums


General Discussions

Migraines and losing time, confusion, and driving

  • By merrie

    So, I am wondering if anyone else has had a similar experience to mine. I did Dr.google it, but came up mostly empty. I have had chronic migraines now for about three years. I see a Dr in Boston, Dr. McGeeney, who is very good. I have been slowly working my way through the preventatives, and figuring out what works as far as abortive and rescue meds. So, doing what I can.

    Anyway, I have always had cognitive impairment issues associated with my migraines, such as slurring speech, stuttering, not being able to say a word, or think of it, feeling confused, foggy, bad motor coordination, etc. Yes my Dr knows about all this. So, about 3 months ago, I was driving to work, and as I was turning onto a certain road, I looked at the clock to see how much time I had to get there. Then, the next thing I knew, I was driving, and there were trees all around, I had no idea where I was, how I got there, no recognition at all. I looked at my clock, and 25 minutes had passed. I kept driving, and as I approached an intersection, it was like I clicked back into normal mode, knew where I was, and kept going. I told my husband about this, phrasing it like “this happens to you all the time, right?” He said, no, and if it happens again, you need to tell me. I went to my migraine specialist, and, no I did not tell him. I said, “so you’re sure this is just migraines, right?” He said he was,and I said nothing else.

    That was two months ago. Since then I have had brief periods while driving, or other places, where I got that feeling like I don’t know where I am, and nothing is familiar, but no lost time. This last Monday though, it happened again while driving home from school. I was at a certain point in the drive home, and after seeing what time it was, was thinking “oh, good, I’ll be home by 4:45”. The next thing I knew, I was at an intersection, and I did not know where I was, recognized anything, I could not even make sense of the street signs. I did not know how to get home. I looked at the clock, and 45 minutes had gone by. I sort of panicked, I was really fearful. I pulled into a driveway, and sat there for a minute, then realized I had my (new) GPS with me, and entered home as the destination. It told me where to go. I had only driven for maybe three minutes before I had that click again, and realized where I was, and yes I should have recognized it all along, as I am at that particular intersection fairly regularly. I went home and cried, and told my husband when he got home. We decided to get me a cell, so if it happens again, hopefully I’ll have the wherewithal to call someone. And I have committed to telling the Dr, even though I am terrified of doing so.

    For some reason, I find this harder to talk about, and I feel embarrassed, and afraid. I could not even be in the room when my husband told his brother why I was upset, I just could not face how I thought he would look at me, or what he might think. So, Tuesday is the day for the Dr’s and my dread is growing more each day. Any encouragement appreciated, and if anyone has had similar things happen, I would love to hear from you.

    Thanks-
    Meredith

    Reply Created with Sketch. reply
  • By marie

    I am so sorry to read this. I have had some time lapses but none so long. They said it may be due to the white matter damage from the migraines. I am working my way through the preventative meds, as well. I hope your visit goes well.

    Reply Created with Sketch. reply
  • By Lisa Robin Benson Moderator

    Hi Meredith,

    Wishing you the absolute best of luck for your appointment Tuesday. I think it is very smart to bring this up to your doctor and very glad to hear that you will do so. Migraines can be so confusing and scary and of course any new symptoms are scary especially if you feel you are not in control. I have heard of this sort of experience before, though maybe not “exactly” as you are saying. For example, when I used to live in a city I would get lost in a familiar subway station. I have heard of people not recognizing their surroundings. I hope your doctor will be able to help you find out if this is part of your migraines and anything you can do to help. It’s absolutely nothing to be ashamed and it’s a sign of strength that you are going to seek help for it.

    Though I couldn’t find a link on your specific issue, it did bring to mind a possibly related type of aura, called “Alice in Wonderland Syndrome.” Here is a link to that: https://migraine.com/blog/alice-wonderland-syndrome/
    Though it is different than what you experience I thought it may be helpful to see that you are not alone in experiencing completely disorienting symptoms and also to know that no matter weird you think you may sound to your doctor, it’s likely he’s heard all sorts of strange things!

    I hope until your appointment you may consider not driving alone if at all possible, and I am glad you have technology (cell and GPS) on your side!

    Let me know how you make out!
    Lisa

    Reply Created with Sketch. reply
    • By merrie

      Hi Lisa (and everyone 🙂 )

      So, I went to the Doctors, with kind of mixed results. I am not sure how I feel about the whole thing. I went in with a list of things to address, one of which was this driving/confusion issue. I also gave him a letter that my sister wrote to him. My sister has been very concerned about me, and does not believe that migraines account for all of my symptoms. She has a daughter with intractable epilepsy, and that influences her outlook, I am sure. Either way, she recently witnessed me having a full blown migraine, (which I usually avoid being around people during, by saying I don’t feel well and need to go home at the first sign of a migraine), and felt that my migraine was very different from what she herself has experienced with migraine headaches. I have all the speech impairments, such as slurring, stuttering, jumbled words etc, and son muscle weakness on one side of body. So anyway, she wanted to go with me to the drs, but I said. No, but you can write a letter. She expressed her concern, while stating she had every confidence in my drs ability, just thought a “witness, or outside perspective would be helpful.” My Dr said, well she should have recorded it, next time get a video. To me this struck me as he was saying that I or my sister was lying. Now, I have been telling him for over a year that this is my typical migraine experience, so did he not really believe me all along? Maybe reading too much into things, idk. He said, I see nothing here that makes me concerned.

      So, I had printed off my post from here about the driving thing, figured that was the best way to tell it without getting mixed up or forgetting something. He reads that and says, well now I have to schedule an eeg, why I say, and he says, because you’re bringing in all these new symptoms. Now, one, the only new symptoms is the driving thing, nothing else is new. Two, why does he sound irritated, or even angry that I am saying this bleeping driving thing happened. I did not “make it up”, and I did not even want to tell him, mostly because I was scared that he would take my drivers licence, and I live in the middle of nowhere.

      I also printed off an article about ms that I really wanted to talk to him about, because it basically lists all the myriad symptoms that I have been dealing with for three plus years, but I wimped out after his reaction to the other stuff.

      Good news it, I got the ok to do my toradol shot im instead of subcutaneous, and we talked briefly about considering medical marijuana, which is legal here, the kind with low thc, high mdh.

      I guess I will be going for an eeg, which will probably be pointless, and go back in December. Really tired of the whole situation, tired of migraines always either coming, current, or the migraine hangover, every day, all day. Wish there was a magic bullet.

      Thanks for listening.
      Meredith

      Reply Created with Sketch. reply
  • By Paco

    Hi Meredith,
    As life, I’m still learning about migranes an my symptoms, although crossed over with other issues. Everyone is different with or without migraine. Tekling your Dr. is a smart move. Iv’e read that there is not of time for anyone specialty to know the side effects of the combination of all the possible meds. Since migraine treatment and prevention is a long process compared to taking maybe one type of pill, for a cold it could be the combination of meds too. If you believe in your Dr. and have a good repoire with him/her, then be confident your doing the right thing. Thoughts are with you. Paco

    Reply Created with Sketch. reply
  • By kmripple

    Hi Meredith,
    I haven’t had that long a lapse of lost time as part of my migraines, but I do get a lot of the disorientation and not knowing where I am. I had two rough years were my migraines were uncontrolled and it was so bad at times I couldn’t recognize a knife in my hand or what is was used for. I found that loss of awareness terrifying (and still do). I struggled for almost a year before I took FMLA. The two days before I asked for the FMLA, I almost crashed because I blanked out. It is scary stuff. Although I am now controlled, I still get these symptoms frequently, although less severe, and they are still nasty.

    Please don’t be mad with your doctor for wanting to do an eeg. He is being thorough. Migraine and epilepsy are like the two sides of a coin. When they manifest, some symptoms (including the ones you describe) could be either. Doctors even use anticonvulsants to treat migraines. You are frustrated with him but think about the fact he could be frustrated too, his job is to make you better and it is hard for doctors too when some new symptom that could take treatment in a new direction.

    One piece of unsolicited advice: Let others go to the doctor with you. Don’t know about you, but I couldn’t remember a third of what was said during my doctor visits. It all kind of washed over me. Having my husband (and one of my sisters sometimes) there helped me get the information I needed and more importantly, provided the doctor another perspective of what was going on with me. My husband still gets mad at me because I downplay my symptoms or not bring them up during my visits, but he won’t shut up about them. He also will ask the doctor questions about possible treatments I am too far gone to even think about.

    Hope this helps.

    Reply Created with Sketch. reply
    • By merrie

      ((kmripple))
      Thank you for your reply. I am glad to hear that your migraines are under better control now. Also good to hear from others with similar experiences, although I wish none of us had to go through this.

      I am not so much angry about needing to have the EEG, I understand the similarity between migraine and epilepsy symptoms, and that he is being cautious. I guess what I am angry about is a.) the fact that HE seemed angry with me for bringing these issues to his attention, and also the implication that he did not believe that my sister was being accurate when she described my migraine that she witnessed, which involved all the typical symptoms that I have, such as slurring, stuttering, word confusion, or “word Salad” in which my words are mixed up/jumbled, along with weakness on one side or the other of my body. This is not new information to him. I have been describing my migraines in this fashion, (along with other symptoms) since I began seeing him about a year and three months ago. So, him saying “she should have filmed it, next time film it, a picture is worth a thousand words”, implied to me that he did not believe the description was accurate, so therefore that would mean he either never listened to my descriptions, or else thought that I was exaggerating things or not stating them clearly. I don’t feel like I should be made to feel bad about being honest with my doctor in stating my concerns, especially since I really did not want to tell him about the confusion/memory loss while driving at all, for fear that I would lose my license.

      I am also angry, and yes, sorry, I guess that is my word of the day, in a more general way at the course my life has taken. I am angry that I am capable of only half of what I once was, that I am taking three preventatives, two injectables (only one right now bc the other cannot be used with my newest preventative), and two anti-nausea meds, but my migraines and other symptoms related to (or not) migraines continue unabated. I have cut down to twenty hours of work, I am likely going to lose my home, I am trying to finish my bachelors, in the hope that it will open other doors for me that I can actually manage with my current level of disability, but struggling greatly to do so. Between daily migraines and all the symptoms they cause, interspersed with vertigo/dizziness, face pain (otherwise known at trigeminal neuralgia), occasional blindness in one eye, eyes that always hurt, hands that shake when I reach for something, or sometimes when I don’t, toes and feet that go numb, burn, tingle, and sometimes ache so bad I want to scream, and oh, the newest thing, a head/scalp/sometimes face that keeps going numb, I have had enough. I can’t do this for much longer. I am so beyond tired of my physical health ruling my life.

      So yeah. I guess I am angry about a lot of stuff, and I felt like my doctor was in my corner until this last visit, when his attitude really threw me. And yes, maybe he is frustrated too, and he is human, I get that. If so, he should just say, hey, this is frustrating for all parties involved, but we will work together and figure it out. Not be angry WITH me, but WITH the situation, as I often am.

      My sister’s letter was very well written, but in it she said while she admired my strength to keep going every day, she did not feel as though I was “really living anymore”, and she’s right, at least partly. I hate that. I just want to throw in the towel.

      Thanks again for all the support on here and for listening.
      Meredith

      Reply Created with Sketch. reply
  • By kmripple

    Hi again Meredith,
    I am sorry if I came across as uncaring or unsupportive. That was not my intention. And I am truly sorry you are so sick and seeing no light at the end of the tunnel, I really hope things turn around for you.

    I think what I meant to say, and forgive if me it makes you angry, is that when we are tired of it all and fed up with feeling sick and not seeing any improvement or not even knowing what the name of what afflicts us is, at times we can read people’s actions incorrectly. Sometimes. All I am saying is that you might have read your doctor’s reaction correctly, or maybe you didn’t. And if you have a good doctor then maybe cut him a bit of slack this time because we are all human and good doctors get frustrated too when patients don’t improve, or maybe they had a bad day apart from when we see them and it creeps in to our visit. That was all. But, if you decide that the doctor is not doing what he needs to, or is not listening and addressing your concerns, perhaps the best thing would be to look for someone who will.

    Again, I am really sorry about you having to go through all of this. And it is okay to be angry. And I did not mean to make you angrier with my response.

    KM

    Reply Created with Sketch. reply
  • By merrie

    Hi KM,
    I did not take what you said as uncaring at all, and I’m sorry if that’s what I sounded like. Just a bad couple weeks, and frustrated with a lot of things has outside of my health situation, and that makes the health worse of course. But anyway, not upset with anything you or anyone else on here says. I asked for help, and I will gratefully accept any wisdom offered. Thanks again. And you may be right, I may be reading into things the wrong way because I am so tired and overwhelmed
    Mer

    Reply Created with Sketch. reply
  • By Lisa Robin Benson Moderator

    Hi Mer,

    I haven’t been logged on in the last few days, but I was thinking of you and hoping your appointment went well. I’m sorry it went as it did. I too would feel frustrated. KM gives some good advice as we all know doctors don’t always live up to our expectations. Unfortunately it seemed like the very visit you really needed someone to be helpful, informative, and supportive. I hope that the next time you see him it goes better. I generally have a rule where I give doctors one or two “passes” before I decide it’s time for a new doctor.

    I also understand what it feels like to have family members say we are not living our lives anymore. Though I’m sure your sister cares a great deal about you, it can still sting.

    Have you been losing time while driving still? If so, I would encourage you to make a follow up appointment with your doctor once you have the EEG results, to discuss this further, rather than waiting until your appointment in December. If your relationship with your doctor is still not going well, then it may be time for someone new. We have a link on finding a new specialist: https://migraine.com/blog/looking-for-a-migraine-specialist/

    I also know, because I live near Boston, that there is a Headache Center at Beth Isreal: http://www.bidmc.org/Centers-and-Departments/Departments/Anesthesia-Critical-Care-and-Pain-Medicine/Comprehensive-Headache-Center.aspx

    Hope this helps.
    Lisa

    Reply Created with Sketch. reply
  • By Lisa Robin Benson Moderator

    PS: At the Headache Center I see Dr Bernstein and I find her to be the kindest, smartest, most wonderful individual so if you do need to switch I recommend her. It can take a few months to get an appointment but often she has cancellations and you can see her sooner. just FYI

    Reply Created with Sketch. reply
  • By solove0611

    Hi Merrie,

    First and foremost let me say that I feel so much for you right now. I went to 4 neurologists before I finally found a headache clinic about five hours from me in Chicago, Illinois. It is called the Diamond Headache Clinic. The neurologists that I visited before Diamond had many of the same comments you said you experienced. It was almost as if they were saying “I can’t figure it out, therefore it doesn’t exist”. A short background for me is that I suffer from Major Depressive Disorder, OCD and Generalized anxiety disorder. All of that being said my mental issues have been completely under control for a little over two years-as in symptom free–woohoo 🙂 All of those things are still in my chart and I still take quite a few mood stabilizers. I will be the first to admit sometimes I get defensive about my past, but I DID all of the hard work and I take the meds and I am completely compliant. When someone makes you feel like you are “making things up”, or “it is all in your head”-whether you have had psychiatric treatment or not it is so frustrating, and I don’t know about you but it makes me want to just give up and retreat into a hole. As if you haven’t already worked through all of those thoughts and feelings on your own and maybe even wondered if you really are crazy. As KM said, your doctor may be frustrated as well, although he should have definitely approached the situation much better. I guess I don’t really have an answer to your situation, I just wanted you to know you aren’t alone. Maybe this will help??

    Reply Created with Sketch. reply
  • By migraine-guy

    Hi Merrie,

    I am new to the forum, but not new to migraines
    with phenomenon like yours. I find that neurologists and headache specialist sometimes do not have enough time, resources, or approval to do the types of tests, research or spend the amount of time with us as they would like. They do get frustrated and lose their bedside manner, but they certainly should not take it out on the patient. I know quite a few of the headache specialist in the Boston area and I find that they are frustrated because they cannot help all their patients and can only temporarily use their suffering with medicines to create unwanted side effects.

    there is a shortage of well-trained doctors in the complicated area of migraine and I think, at least in this area, many doctors are overwhelmed and overbooked. Dr Berstein is hard to get in to see if you already have a headache doctor. She has a screening process, and as Lisa said she is very kind, patient, smart and they lower the lights in the waiting area. For me, understanding my Dr’s predicament was the only way I could have some compassion for my neurologist before and during appointments. This allows me to adjust my dependency on him, but not that much. I still go in for my appointments desperate for answers, new insights, new treatments or approaches. I read much of the research my neurologist or his team have been involved with.
    Like your Dr. McGeeney has done a lot of research on Cannabinoids for headache and refractory migraine. He is publishing important stuff but may be overwhelmed or underestimates his ability to help his patiients.

    I also try to bring my wife or a sibling to my appointments to ask questions and take notes, not only do I find it helpful but I sense that my doctor feels less pressure from me because there’s someone else in the room Who is not in pain.

    Anyway, I really am sorry for your struggle and the experience you had. I have have a few EEG tests and always hope they will find something definitive, and one time they did which helped us choose a new course of preventative meds.

    by the way, I can relate to having to cut way back on work hours, earning less money, struggling through school and having one’s life narrowed down to brief intervals between disabling migraines.

    Reply Created with Sketch. reply
  • By Jenna

    I’m so sorry to hear you’re going through so much. I definitely haven’t experienced anything as extreme but the day I tried to drive myself to the ER after a two week attack, I was only five minutes from a hospital I’ve been to many times and I somehow got lost and was driving around confused. My husband had to come find me and take me to the ER himself and he says I was way more disoriented then I even realized. I will never drive in the midst of an attack again. I haven’t lost time though. I hope things get better.

    Kind regards,
    Jenna

    Reply Created with Sketch. reply
  • By merrie

    Hi Lisa,
    Guess I haven’t been on in a while. There were a bunch of new replies I had not seen, which I thank everyone for. I am getting by. I only had one additional instance of confusion/losing time while driving. It’s not like it happens frequently, I think only three times total now since last June. I did not move up my appointment with Dr McGeeney. It’s coming up this Tuesday. We will see how it goes. I have had a lot of trouble getting in touch with my Dr, called him for 6weeks regarding a note I needed for school before talking to the office manager. Then this week he randomly called me twice. Kind of weird. Anyway, just know he’s really busy, so I don’t take it personally (too much anyway)

    My primary doc referred me back to my old maine Neuro to investigate MS based on other stuff going on, but not til February.

    Who knows. I am ready to quit all these meds, as they aren’t working, except my injectable med I take when I get a migraine. Doesn’t seem to be a point.
    Thanks- Mer

    Reply Created with Sketch. reply
  • By LisaM

    Hi all. I have been experiencing chronic migraines for a couple years now. I am medication sensitive and have tried several with too many side effects so I had to stop them. I am currently getting the Botox injections and have the sumavel injections for bad days. Used that injection today. Anyways, I too get the confusion driving, however not the lost time. I also have a very had time seeing in the darkness whether I am driving or in my house with lights off. I have been diagnosed with Ménière’s disease as well. I would have to agree that it is frightening when you have driven roads for most of your life and then do not know where you are. I have depression and anxiety as well. I have FMLA in place at work and miss usually 3-4 days a month. I have been going to the DENT Neurological institute in Buffalo. Like my NP AND AM ACTUALLY going to see my Dr when I go back in January. It is difficult for my family to understand at times and I feel like they (people) are just tired of hearing about it. Anyways I had an EEG and it was good. I get the prickly sensation on my head, face, sometimes arms legs too. Thought I was having a stroke one time. I have been to the ER when the vertigo was so bad I couldn’t even sit up w/o help to be sick. Good luck to all and if you find an answer or have suggestions I would live to hear from any of you.

    Reply Created with Sketch. reply
  • By LisaM

    I left out that driving with headlights coming at me or tail lights in front of me is horrible. I am very light sensitive from dusk and night. I get very dizzy and hurts to move my eyes. I have tried using those HD night driving glasses and they are just night dark enough for me, which will most likely result in a migraine…Thanks

    Reply Created with Sketch. reply