Complex Confusional Migraines
Sometimes it might feel like a migraine diagnosis just makes things – well, more complex and confusing! That certainly can be the case if you have been diagnosed with complex confusional migraine. So let’s try to clear things up a little bit.
First, we do need to insert a note of caution. Sometimes doctors will use migraine terminology that is outdated or just very unspecific. For example, the term “complex migraine” can simply mean that the migraine attacks are not what the doctor is familiar with, or that there are other symptoms that suggest something other than migraine as well as migraine itself.
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But complex confusional migraine is a little more complicated.
The disorder that we sometimes call confusional migraine or acute confusional migraine is very rare, which is one reason why the terminology hasn’t been standardized across the board. It seems to be most common in children and teens, but can occur at other ages.
Typical symptoms are summarized in a report from the journal Pediatrics:
ACM presents as a sudden confusional state, usually accompanied by agitation, visual symptoms, dysarthria [resulting in slow or slurred speech], and memory disturbance. In most cases, headache precedes or follows the attack. The attack lasts 30 minutes to 24 hours. Head trauma has been recognized as a strong predisposing factor. Physical examination is normal in virtually all cases.
Confusional migraine is known as a “diagnosis of exclusion”, which basically means that you’ve been carefully examined and tests have been done and it doesn’t appear to be anything else. There is no test to definitely diagnose complex confusional migraine.
However, about half of the cases seem to come after some kind of head injury.
Complex confusional migraine is not a term used in the standard for migraine diagnosis, The International Classification of Headache Disorders from the International Headache Disorder. Some have argued that confusional migraine should be included as a distinct type of migraine.
However, we need to be careful, because there are other types of migraine that may cause confusion, agitation, or speech or memory problems. Even more importantly, there are other diseases and disorders which could cause these symptoms, which is why very careful testing needs to be done.
So what should I do if I’ve been diagnosed with CCM?
First, be sure that proper testing has been done. This means taking a medical history, a physical exam, and possibly blood tests, imaging tests, an EEG, and so on. The doctor or specialist will need to know what you’ve been recently exposed to, if you’ve had any injury, if you have other types of headaches, and what medication you may be taking.
Second, be sure to ask your doctor for details about your diagnosis. Is she familiar with other types of migraine?
Finally, prepare yourself to try some of the migraine treatments that your doctor or specialist will suggest. If your attacks continue, consider a second opinion. If symptoms change or get worse, see the doctor right away.
Treating Complex Confusional Migraine
Because CCM is relatively rare, there is no standard for treating it. If it is recurring, many of the familiar migraine treatments may be tried, such as triptans. Because of its similarity to symptoms of epilepsy, anti-seizure medications may be tried as well. These types of medications are common for treating many types of migraine.
If you’ve been diagnosed with complex confusional migraines, we would like to hear about your experiences. Be sure to leave a comment!
Also see: Acute confusional migraine: our knowledge to date.
5 March 2015 @ 12:58 pm
I was diagnosed about a year ago haveing amnesia and losing up to 24hrs.at a. Time not knowing were I have been our what happened and haveing others ill with me because I have called or text all night are family can’t find me.
28 March 2015 @ 9:49 am
I was in a severe bicycle accident Aug. 2012. I broke many bones, and had a concussion. I had my first confusional migraine/amnesia episode April 2014. Since then I had them about every 6-7 weeks. My last was January 14, 2015, the day after knee replacement surgery. I don’t know if my pain medication (post-surgery) has made a difference, or if the cycle is really broken, but I’m hopeful I never get another. Typically the migraine occurred one day, followed by amnesia the next. I never recovered the memories of those lost days, and I’ve also lost other memories from longer ago—whole trips to other countries, long visits with families and friends. Very frustrating!
My neurologist/migraine specialist recommended daily aspirin and coffee (2-4 cups daily) which I love. So far, so good.
21 June 2015 @ 8:15 pm
Unfortunately, I had my 7th episode April 9, 2015. This time the amnesia was much, much worse. It’s wiped out my memories of all events (or nearly all) to last fall, and even some longer-term memories. I’m very worried that with the next migraine event, I’ll lose even more memories. I’ve been tested for stroke, and there’s no evidence of it. If I have another occurrence, my neurologist wants me to get to an emergency room for an EEG during the event.
13 October 2015 @ 10:07 am
Going to an ER as a recommendation for this – just be aware that the overhead bright lights, possible restraints, catheterization to obtain urine, blood draws, scans, may be necessary to rule out other issues but, along with the noise, are a migraine nightmare. Not sure what is the answer but once you have done the ER route once, it sure doesn’t feel like it would be too helpful a second time.
5 November 2015 @ 11:18 am
My son has been having attacks since grade 7. They use to be once a year but he has had 4 in the last 6 months. He is now in grade 10. When he has an attack he sleeps for 19-21 hours a day for 7 -10 days. Heis non reponsive to simple tasks and does not remember the week when he comes out of it. It is very frustrating and scary.
2 December 2015 @ 6:12 pm
Hey Everyone,
The last 2 months have been a rocky road for me. I have been feeling fine for my whole life. Never any sign of migraine or health issues. Then in the begging of October 2015, I started feeling really dizzy and disoriented at work. I have had to miss work and school. As well I would mention that I’m only 17 years old. Anyways, it just got worse after that. Around the middle of October, I really had a hard time living. I have had terrible headaches, dizziness, disorientation and spacial awareness issues. I would sometimes feel sick to my stomach. I have been in and out of the doctors office and nothing was positive. Then late October, the scariest thing had happened to me. I was feeling fine all day. Then around 6pm, I went to go eat a saltine cracker. Then after I swallowed it. I started feeling REALLY dizzy, disoriented, their was something in my throat, almost fainted, throbbing headache, toes and fingers were getting numb. I went upstairs and told my mom I was going to lie down. Next thing I remember I was at the hospital. My mom has told me I was doing a whole bunch of creepy and funky things like tap dancing and snapping my fingers. She said I wouldn’t respond to her and if I did it was so irrelevant. This had lasted for around 3 hours. The doctors have done all the tests (blood, thyroid, diabetes, talck screen, white count etc..) and everything came back negative. Then I went home that day and was fine because they had gave me medicine. Then just for the next month felt so crappy and just having headaches and disorientation. It is the most uncomfortable thing ever. I couldn’t eat because I was so nervous to because it felt like my throat was closing up. Then on November 27th 2015, the same thing happened. Every test came back negative. I am now getting really worried. No eeg yet as they referred to me as a “medical mystery”. Then last night which was December 1st. Same occurance and therefore led me to the diagnosis of Acute Confusional Migraines or ACM. They had started me on Depakote 500 mg twice a day. Let’s hope their will be a huge cure for this soon and let this “medical mystery” come to an end.
14 May 2016 @ 12:53 pm
My son has been diagnosed with ACM. He’s 16 years old and have been battling this from last February. It’s been more than a year and still not under control. He’s missed the end of his 10th grade and entire 11th grade. I’m exhausted with all his seizures, migraines and being disoriented. He’s been on so much different medications but still not under control.
T
8 July 2016 @ 10:56 am
Hi Trudy! My 16 year old daughter has also been diagnosed with ACM. She has been battling these episodes for 2 years now and is not currently on medication because she only gets the episodes every 4-7 months. But the episodes are scary and are now impacting her independence. I feel your pain.
11 July 2016 @ 12:22 pm
Thank you Trish for your reply! Its good to know that I’m not alone and your able to understand how hard it is? Its difficult trying to explain things to others that don’t understand this condition and I’m really grateful for your response.
Trudy
11 July 2016 @ 1:19 pm
Hi Trudy!
It does help knowing that we’re not alone. I am learning so much about ACM but I haven’t spoken to anyone going through it since it’s so rare. After an “episode” my daughter experiences processing difficulties for about ten days after the headache subsides. We are able to deal with the actual migraine headaches without too much trouble but the actual confusional episode is what scares the death out of us. She has no warning when it’s going to occur and she completely loses all awareness of where and who she is. It lasts for about 15 minutes and then she immediately falls asleep for an hour or so. When she wakes up, she has a migraine and has no awareness of what happened. Now that she’s getting older it is getting scarier since now she wants to drive, get a job and do the things 16 year old kids want to do. My heart is breaking for her. Does your son have any warning or know what triggers his seizure (episodes)?
9 December 2015 @ 5:22 pm
My story is similar to everyone else’s. I am 45 years old and have recently been diagnosed with CCM following months of tests due to a really scary episode. I can’t remember anything about it but I scared my husband so much he rang for the paramedic, I had been in bed for approximately 36 hours, was in and out of being responsive to him when he checked on me, my answers became more and more bizarre and he states that I just wasn’t myself. initially it was thought I had suffered a stroke / TIA (trans ischemic attack) but this was ruled out by the EEG. It did show some unusual white lesions on my imaging which are still unexplained but my neurologist came up with the diagnosis of CCM. I am currently prescribed propranolol and sumatriptan and am due to start on an antidepressant also (to help with the mood fluctuation and excessive sleep) My attacks have lessened in frequency but not in severity and has started to affect my work. It is a very scary thing to live with and there doesn’t seem to be much information or support out there – if anyone has any ideas of either, they would be greatly appreciated!
20 December 2015 @ 5:37 am
After having a car accident 3 years ago, i have suffered from these strange episodes of confusion, anger, crying, sweating, psychosis, excess sleeping, nausea, vomiting, slurred speach, vertigo, depression, sensitivity to sound and light and probably many more symptoms…. doctors have told me to go away simply because they havent got a clue whats wrong with me. They have thought I was mental and pushed me down the mental health route but even they dont know and push me away too. So just parked me on antidepressants. After fighting for 3 years to see someone, they agreed to send me to a neurologist and after thinking it may be epilpesy, I am currently having tests for acute confusional migraine and non epileptic attacks. I’m on Topamax which I think has helped but has also given me daily typical migraine’s/ headaches 🙁 and I can now see why they call it Dopamax. Spelling, and writing is a real issue especially as Ive just upped my dose.
For anyone reading, the journey’s long, plod along, dont give up
22 June 2016 @ 8:47 am
Wow, my story is exactly the same as yours Alan, word for word.
Ive just had to drop out of uni because although I’m on Topamax I’m unable to study. I have trouble reading, writing, and the migraines give me mood swings, aggression, confusion, and well just a bunch of other things.
If you’re still around. It would be good to hear how you are getting on now
31 December 2015 @ 9:14 pm
I have had migraines all my life, with a small period, likely fifteen years without Obvious symptoms except when I had my periods. Lately they have returned and are “odd” to say the least. The attacks start with waves of dizziness and vertigo, then I get a little foggy in the head, the latest one I almost fell over in the car, nausea and fogginess overwhelmed me, I felt lost, and in a cloud, but like I was within the cloud looking out. I was walking in the drug store and I wanted to lie down, I felt like I was going to fall down, so my mind kept saying lie down, anywhere. I was able, with effort to speak to people but it was difficult, very. I started eating a burrito once back in the car and began to choke, which led me to think I was having an allergic reaction to the burrito. I went to the hospital and felt agitation set in, and I got lost in the hospital hallway. This migraine lasted for three weeks, I am just now feeling better, and out of the fog. In fact the day I had the eeg was the first day the migraines were gone. My migraines typically do not start with headache pain, they pain may come later, or in and out. Sometimes my ears will ring. The nausea is by far the worst part and the confusion. People have witnessed me getting lost and its profound.
15 August 2016 @ 11:39 am
Jane,
You and I seem to at least partially having the same issues, which makes me feel better about mine. I have had migraines for many years now (a gift from my father who has them); I can guarantee I have one every month before my cycle starts. Back in Nov 2015, one of the providers at the health center where I work examined me; I was having vision issues, I felt disconnected and confused, I had to really focus on every single task I was doing. My head didn’t hurt at all, it was the other symptoms that worried the provider. Then sent me via an ambulance to the ED where they did a CT scan; it was normal. The ED doctor said he thought I was having a migraine. I argued with him multiple times, I kept telling him that it wasn’t like my typical migraines. He then told me he thought I was having confusional migraines. I actually had one of them the Saturday before my trip the ED; I just kept thinking in my head, “I wonder if this is what a stroke feels like.” I worked through it, though that was the longest 5 hours of my life. I had mostly all confusional migraines everyday last week. Yesterday (Sunday) was the first day last week I didn’t have a migraine of either kind. I’m sitting here at work, and I know I’m getting one right now. I’ve been forgetting patient’s names, I seem to be a lot slower than I normally do. Oh and who doesn’t love a garbled conversation with co-workers. I have an appointment with a Neurologist next week. I hope he can give me an idea of why I’m having them almost every day and come up with something to make them stop.
I feel your pain, literally! Keep your head up, lol. No Pun intended.
27 January 2016 @ 7:32 am
I was just released from the hospital yesterday for this. I am not prone to migraines and believe my last one was roughly 20 years ago. Mine started as just feeling woozy and confused. I also had what I call the ‘woob woobs’ (like when one car window is open and the pressure in the car makes that pulsing feeling). By the time I got to work in the morning, I knew something was wrong. I couldn’t focus, I was extremely confused and unable to communicate effectively. I called my husband, who after hearing me, came to pick me up immediately. He took me to the urgent care center right up the road and within 5 minutes of seeing me they sent me to the ER. By the time I reached the ER I was very dizzy and wobbly and having difficulty getting words out. My husband described my speech as ‘having a mouth full of lidocaine while being drunk’. I couldn’t get words out and when I tried they came out in a slur of sounds. I was immediately taken for CT scans and X-rays. Roughly 5 doctors came into observe me and perform various tests and 12 viles of blood were drawn for every other test under the rainbow. Within 30 mins of arriving at the ER I was strapped in to the MRI machine for roughly 40 mins. I was admitted into the hospital for observation while we waited for results. My husband asked if I’d been bitten by a spider and was coming into my superhuman powers because my hearing was insanely amplified. I could hear quiet conversations several rooms over as if they were blaring over a loudspeaker within my head. It was deafening and only added to my confusion. Although it appeared I was having a stroke, none of the other physical symptoms were present. Later that night my speech started to improve and my head began to throb. After various consults with neurologists and neurosurgeons they concluded that it was an ‘acute confusional migraine with periods of Alice In wonderland syndrome.’ Now I just feel crazy! Haha the doctors did find lesions on my right lobe which are consistent with trauma to my brain, which I don’t really know where they could have come from, but follow up appts with both the neurologist, neurosurgeon and MRI tube are in my future. Whatever happened (and is still lingering 2 days later) was terrifying for my kids, my husband and myself and I hope we can figure out the cause and prevent future episodes.
3 August 2016 @ 8:52 pm
Hi Trish,
How’s everything going with your daughter? As for us, it’s still a daily battle. Little things can set him off, such as processed meats, salty foods or stressful situations. I’m wanting to ask for different medications but my son is so worried about side effects? Let me know if you have any suggestions, I’m not sure how much longer I can do this.
Trudy
4 August 2016 @ 7:26 am
Hi Trudy!
I am sorry to hear that you are dealing with this on a daily basis. It is so mentally and emotionally exhausting.
We had seen so many neurologists and were never happy with the conflicting recommendations that we were receiving. Since the doctors were all telling us and wanting to prescribe different medications, we researched and found that the best neurologists were in Boston at the Boston Children’s Hospital. It is there that we felt that we received the best diagnosis and support. Since we live 5 hours from Boston, we only travel there once per year for an annual visit but we are in touch with the neurologist each time my daughter gets an episode. In fact, I usually video my daughters episode using my iPhone and then I send the video to the Boston neurologist. This has been helpful especially since many episodes appear a bit different. I am not sure if you’re happy with your son’s doctors but I’d highly recommend going to Boston.
16 October 2016 @ 12:56 am
I was diagnosed with migraines about ten years ago. The headaches became so severe and frequent that my neurologist started me on Botox injections,they were working wonderful and still go a long way to block the pain. I have been having left sided numbness,confusion and feel like I’m going to pass out. These episodes last from a few hours to a few days.The only thing that helps even a tiny bit is to try to go to sleep. These episodes are really scaring me and I don’t know what to do! Does anyone have any suggestions?
19 October 2016 @ 4:18 am
My neurologist started me on Epilim in July and I’ve made improvements. I’ve also been on venlafaxine for a while. Ask your consultant for a review of your options. My neurologist also said do not take paracetamol only ibuprofen. When starting or changing Meds I’ve found it very tough and often there’s more negatives than positives but a few months down the line the side effects for me to tend to wear off and the medication seems to be working. Keep positive. I’ve also found sleep is way better than any medication or tablet for acute relief. So if you are struggling and you can have a nap, do so. Family and friends may think you are being lazy especially if your in a difficult period and like me sleeping 12-16 hours per day. Just explain sleeping helps. I’ve got earplugs and and an eye mask for those day time naps I need to feel ‘normal’ again. Having your employer aware of your needs is essential. For example, they are legally required to improve the workplace if there any triggers present at work. For information see https://www.migrainetrust.org/wp-content/uploads/2015/09/Help-at-Work-The-Migraine-Trust-July-2016-1.pdf
3 November 2016 @ 11:44 am
Hi everyone!!
Friday i was rushed to the ER by my boss! In healthy as a horse 31 yr old and went on a normal1 mi walk on break but towards the end huge black spirals took over my vision instantaneusly ( i have suffered migranes with aura since 15 yrs old about once a year ) but this was NOTHING like the normal aura i was used to …within 5 min i was grabbing onto the hallway walls telling a co worker i cant see but yet my eyes were wide open so he walked me to my desk where my supervisor took care of me
She wanted to call 911 but i insisted she take me to er which was a huge mistake ….vision restored slowly about1 to 2 min later but i was unabel to comprehend anything and couldnt remember how to speak! It was horrifying and i told her i didnt know who I was …this followed hours of puking and walking sideways. My hand was trembling and i was so weak.
The crazy thing is the headache was tolerable which on a usual migrane of mine its the worst pain possible to the point where i will pull my hair out.
The er didnt do any tests since i had a history of migranes ! This upsets me because i never experienced anything like this before…
Im currently awaiting an MRI which is on sunday and did blood work yesterday but from what i can read those results look normal!
Im so nervous of experiencing this again that i dont feel like I can carry on with life in a normal way ….kinda nice to know im not alone and im praying they help people like us because there is NOTHING “normal” about this !!!
3 March 2017 @ 10:30 am
Hi,
I am a 47 year old female with a history of Hashimoto’s (undiagnosed for 14 years), and Adrenal Insufficiency. Also had a severe case of Cytomegalo Virus at age 19 when health problems started. Strong family history of Autoimmune diseases. I had headaches as a child occasionally. In college would have week long migraines. Have had migraines throughout adulthood. Passed out on a rollercoaster after suffering from a bad migraine that day. Had a bad blow to the head when passing out in the bathroom (low cortisol). I am currently taking Verapamil and take midrin when migraine occurs. Also will take benadryl with a migraine if I am able to stay home in case I get sleepy. About 10 months ago, had 1st confusional migraine. I had slept more than usual the night before (fell asleep watching movie, which I never do.) A bit dizzy the next day, took a nap and then was driving son to friend’s house and started seeing double. Then driving on wrong side of road. Thank God that son was with me. I don’t remember anything but bits and pieces for next hour. I apparently turned the car around because I missed the driveway and then could not put car in park. Couldn’t undo seatbelt or get myself into back seat so they could drive me to hospital. Was saying crazy things like, “Your glasses are making me see triple.” Got a horrible migraine after because they kept me in hospital and wouldn’t give me any of my usual meds. Also not possible to sleep all night. They wanted to give me aspirin but I have a platelet disorder. I had to tell several nurses and doctors not to give me this! Diagnosed with confusional migraine. This week, had 2nd confusional migraine. Not as long, maybe 30 minutes to 1 hour. Not able to function normally, thought a “man” had come into my house and stole my beads (i was working on a piece of jewelry and finished it poorly and don’t remember this.) Son got me to bed and I tried to read and do a puzzle, but couldn’t. Couldn’t fall asleep either, and was very cold. Couldn’t warm up.
I tutor and teach math part-time and have trouble doing my job when I am having migraine days. My memory is horrible and I experience a lot of brain fog, which makes it hard to help my students. I have been considering going back to Grad school for math, but don’t feel I can as I have been struggling more with with the migraines and brain fog. I’m looking for a new neurologist as my current one is scheduling 4 months out. Looking in the Detroit/Toledo area.
4 October 2017 @ 12:14 pm
I am a 31 year old female, my history of migraine started about two years ago. I’ve had a total of 3-4 during that time; always preceded by a visual aura in which I lose part of my vision, and become slightly dizzy. If I take motrin right away at the first sign of a visual disturbance, the headache is usually not so bad. On 9/30/17 I had a visual aura that lasted for about 30 minutes and regained my full eyesight. I was unable to take motrin during that time. My mom was with me and we went to lunch so I could eat, drink, and take some medicine. I was not yet experiencing any headache pain at this point.* While I waited for it to take effect, I tried to read a text message and the words made no sense. It was like I was reading them out of order. I handed my phone to my mom and tried to tell her, ‘I got this text and it doesn’t make sense, can you read it for me’ but the words wouldn’t come to me. I was thinking in abstract; ‘ there are words….in my phone…I can’t read….someone sent…’ but all I could stammer was “there’s, there, th- there’s…” then I “I’m confused” “What’s happening”
My mom is an RN, and was aware I had had a visual aura so she knew I was probably just having a complication from the onset of the migraine so she kept me calm. I remember the events of the day fine, no amnesia whatsoever. I got a bad headache AFTER the confusion, and slept the rest of the afternoon.
Since then, however, I find myself ‘fuzzy’. Unable to fully recall events from the past week from both work and personal events. I had trouble thinking of a route to get somewhere. I was given a choice b/t two things and thought one thing in my mind but said the other out loud. I’ve been having periods where I feel dizzy.
I’m terrified this will happen to me again without warning. I had no head trauma, and was not particularly stressed out leading up to the aura. I’m scared it will happen when I’m alone or out and about with my toddler. Has anyone ever had this and then never had it happen again? It seems like everyone on here has this and then has a history of recurring episodes. What has been your experience with lasting side effects like mine? Do they go away??
For those of you without head trauma, have you been able to pinpoint any other causes?
There seems to be so little information because it’s rare so I appreciate any information anyone wants to offer! Thanks in advance!!
24 May 2019 @ 11:30 pm
My 14 year old son has had chronic migraines for over a year, then four days ago he had a fever, bad migraine, delirium, hallucinations and was diagnosed with Acute Confusional Migraine. I’m trying to learn more about this condition.
3 February 2020 @ 2:37 am
My daughter diagnosed at 10. She presented with paranoia, delusions and hallucinations, head banging, irritability and totally changed personality. Was not able to articulate that she had terrible head pain to start with. Wandered round house like a crazed animal, not seing to recognise anyone. Total amnesia afterwards. Initially they thought she was traumatised or abused or simply playing up but eventually diagnosed. Now into third year of them. Missed school ++ and still plagued with them. Ruining her life.