Welcome to the Silent Migraine Forum
Welcome to the Silent Migraine Forum
By Teri Robert
I sometimes have silent Migraines with aura and silent Migraines without aura. I get all the symptoms, but the headache. They stink!
What concerns me about what you wrote is that you’re talking about weakness. What type of Migraine have you been diagnosed with?
Typically, “silent” or “acephalgic” Migraines include the symptoms you usually get other than the headache. Have you discussed these episodes with your doctor?
I am glad to find this forum. I cannot figure out what type of migraine I have. I have dizziness and weakness a lot of the time, combined with nausea and wretching. I completely identify with the head rolling – I’m so glad that it can be classed as a symptom – weakness in upper body, combined with throat and neck aching. The whole trunk just feels as though it cannot be supported. I don’t know whether I have vestibular migraine combined with silent migraine… previously it was just the symptoms i.e numbness, tingling, painful mouth, short term memory, speech and weakness with a pattern of sporadic headache. These symptoms are there all the time ie. tingling and numbness especially. Now I find that I have headache and stiffness much of the time. am having to educate myself as have been told very little by doctors. Gp wants me to go onto duloxetine but am reluctant – what is the experience with propanolol and duloxetine?
You have quite a few questions here that might be best answered in other forums so your audience is more targeted. Here is a link that will get you to different thread choices for your different quetions: https://migraine.com/forums/ This is a great place to talk about silent Migraine tho!
As to figuring out what type of Migraine you have…
I can’t emphasize enough the importance of seeing a doctor for an appropriate diagnosis. Without a good diagnosis, your treatment may not be correct. You could go literally for years trying things that don’t work because you didn’t get the right diagnosis in the first place. This would be a tragedy.
We can’t diagnose you over the internet. This is something that can only happen when you personally see a physician. Migraine and headache specialists have the most experience and training when it comes to diagnosing, treating and management of headache disorders, whichever of the over 300 different disorders it might be. In fact, it might be more than one problem, as that too is fairly common.
Please consider seeing a certified specialist asap so you can get a handle on what’s going on, and can be assured that it isn’t anything you should be worrying about. Once you have a diagnosis, we can help you learn about it. The chances are that it is nothing dangerous, but we want to be sure we stay on the right side of those odds 😉 Here is a link that can help you find the closest specialist to help you: https://migraine.com/blog/looking-for-a-migraine-specialist/
You don’t give a lot of info here re: the meds you’re on or your “stiffness” but you should know that some medicines can cause side effects that create spasms. These spasms can sometimes become permanent so, again, please get this checked out, okay?
Thanks Ellen.. I have an appointment for a neurologist soon. Im sorry if i’ve been using the forum inappropriately and of course you can’t diagnose. I’ll keep trying the meds and have been keeping a perspective of everyone being different and needing to see consultant. Unfortunately up until discovering the forum I’ve been in the dark really… now I have the vocabulary and confidence to ask questions and don’t feel that I’m making it up. Apologies again and thanks so much for taking the time .:)
No apologies ever necessary!!! Just trying to help you to be able to get the most from your experience here. Especially when discussing particular meds or treatments, getting into the right thread can be super helpful. That’s where people who have the experience you’re looking for, are hanging out.
I’m so glad you found us, and don’t ever hesitate to ask a question. We’re here for YOU!
Yes, mine are mostly with aura. I sure don’t like silent Migraine either. That said, I would much rather go without the pain portion if I could – for sure! Still, even those people who do understand and sympathize about Migraine will often be confused by a silent Migraine and it can be tough to be taken seriously when they happen.
Remember too Cynthia, that it’s really important to report any changes in your normal Migraine pattern to your doctor. Be sure your doctor knows about the weakness you’re having. It might be a good time to begin a new conversation with him/her about your symptoms…
I currently don’t have health insurance, so I cannot see my neurologist at the moment. Plus, I’m looking for a new one because I didn’t like my old one, he was way too pushy to say the least.
I’ve had this weakness symptom in my migraines for a very long time, my old neurologist knew about it. Just severe migraines, nothing really out of the ordinary he said. They change all the time really. I will have some huge attacks to where I can’t move or talk. Or I’ll just have a regular migraine where I’m light and sound sensitive and just generally weak and slow. Right now, I’m having a migraine that is keeping me from sleeping. Hard to sleep when it feels like someone is slamming your head into a wall over and over again. No weakness, just pain and slight sensitivity.
By Teri Robert
I wish I had an answer for the insurance and affording to see a doctor issue, but I really don’t. I do know how difficult that can be because there was a long period of time when I had no insurance and very little income.
Still, the best thing I know to tell you is to see a doctor. The only form of Migraine that causes true motor weakness is hemiplegic Migraine, and it’s a rare form of Migraine that needs to be treated differently than most other forms of Migraine. I know you said you’re not having the weakness now, but you’ve mentioned it a couple of times now.
Migraines aren’t just headaches. Migraine is a disease. Other than getting to a doctor who can help you learn how to treat these Migraines and take care of yourself when they happen, I’m not sure what else to suggest to you. It’s not safe for me to suggest any medications or treatments.
Please keep us posted?
Thank you guys for sharing about your silent migraines. My neurologist & I are exploring my symptoms, which might be pointing to silent migraines.
I have significant weakness: my head drops and rolls from side to side & it’s a lot of effort to hold it up. When I lift my arm, my arm drops because it feels too heavy to hold it up. right away…it’s almost impossible to hold it up.
My leg and arm twitch.
I’m unable to speak a word that is right there in my brain or my speech is slurred & I sound like someone who is having a stroke. It’s scary.
Sometimes I am very sensitive to light.
As Iearn more, I’ll share my experiences and hopefully help others.
By Teri Robert
As you work toward a diagnosis, there’s something else you need to know. A diagnosis of “silent” or “acephalgic” Migraine isn’t really a complete diagnosis. You also need to know what type of Migraine you have. Silent isn’t a type of Migraine, it’s a descriptive term describing that the Migraine skips the headache phase.
It’s important to know what type of Migraine you have because it can make a significant difference in what form of treatment is appropriate.
I’ll be watching for updates from you. 🙂
I’m new and just found this site. I experienced what I think was a silent migraine for the first time last night. I started to get the distorted vision while on my computer and watching tv. No headache or other symptoms and it lasted 15-20 minutes. It scared the hell out of me and I immediately went to ER to be checked. THey didn’t anything but a cursory exam of the eyes and heart with stethoscope. No other tests. I was told to go to an eye doctor and follow up with my med doc.
I’m 52. Can something like this start at this age? I’m also worried that I might have to stop taking my bio hormones (VERY VERY low dose) if that is the culprit.
My regular doctor wants to see me in two days and I’m hoping she will do some tests to rule out anything serious first.
Does anyone know what the long term prognosis is for silent migraines?
How do they determine if you are having ocular migraine or silent?
Sorry so long.. thanks
I have been going on 10 years now with symptoms of complex migraine or seizure activity…or possibly both. We cannot document on an EEG a seizure, so we cannot prove seizrues, so right now my written diagnosis is complex seizure.
I’ll describe my last “episode” (as i call them) since often these “silent migraines..if that is what they are…feel just sooo unusual and strange to me.
March 16 10:30pm: Woke up & shouted Karen, Karen. Still sitting in bed, held my arms out waiting/anticipating somthing coming (could just feel some tingle telling me something big was on the way). Then a BIG rush SENSATION started at the back of my neck and up into my head and down into both arms. It felt almost like water moves; flowing, but sort-of tingling. But i still describe this as a sensation not a numbness or pins and needles. It was POWERFUL/STRONG and EXTREMELY FRIGHTENING!
My husband started freaking out because i was trying to say “Call 911, i think i’m having a stroke”, but obviously those words did not come out. Some mish-mush of that sentence did. It took several minutes before i could say a sentence that came out properly. I can remember hearing & seeing my husnand. But i don’t recall hearing my words being wrong. I was surprised when he said my words were all messed up.
To shorten my story, today is May 17, 2 months later and i still have symptoms from that event. The last stronghold symptom is vertigo. Just like everyone else says, it can can 24 hours or even several days to recover from a big migraine, this has taken me 2 months and i’m still not quite myself. My neurologist has given me Valium to take each day to help “wait” for the vertigo to resolve itself…which we believe in-time it will.
Oh, by the way, i should mention that i also have a condition called Chiari Malformation for which i had surgery. A suboccipital decompression (craniotomy & c1 laminectomy). This condition Chiari could also be a factor… We have 3 illnesses to sort through, Chiari, seizures & migraine…
Thanks to anyone who might want to comment with support or relative comments.
Are you seeing a headache specialist?
This might be the very best place for you to start. As you know, we aren’t able to diagnose you, only your doctor can do that. However, it is not usually a typical Migraine symptom for it to hold on for so long, and I would be concerned it might be time for a discussion with another doctor – especially if that doctor deals with nothing but headache disorders.
We are here to support you though, even if what you’re experiencing isn’t an acephalgic Migraine. I hope you’ll keep us informed and updated on your situation…
I too have been diagnosed with Chiari Malformation and have opthalmic migraines. Hurricane Irene is passing through yesterday and today and I am having a record number of these migraines. Oh Joy. My Dad ended his life with a brain injury involving a brain bleed and contra coop (spelling) injury. Injury to base of scull, contra coup to frontal. My Dad never had occation to be diagnosed with Chiari malformatio. Mine is asymptomatic and was discovered by accident. I am wondering if anyone has any information on long term sequela (spelling?) of chiari, opthalmic migraine etc.. Ultimately I am wondering if what happened to my father might be in my future?
Maggie, there is no way for anyone to tell your future. I suggest you seek the counsel of a headache specialist as well as a chiari specialist. Headaches including Migraine can be symptoms of chiari so I am concerned at your doctor’s dismissal of these as potential symptoms of your malformation. Have you considered another opinion?
Hi I had my first ocular migraine/retinal migraine at around 18. with complete loss of sight in one eye for duration of migraine.It didn’t last long..I was later told my the eye doctor they are called ocular migraine.They actually sound more like a silent migraine. anyway migraines run heavily in my family.A few years ago they freaked if I had them once a week. well two days ago I had three in one day.They dont last long but was wondering if I should have it checked out.I have taken Atenol for the migraines and for my high blood pressure for many years. the blood pressure is under control.So am not sure if I should even bother mentioning it to the doctor.
By Teri Robert
Migraine that causes total loss of sight in one eye is retinal Migraine. Any form of Migraine can be silent. Silent is a descriptive term, not an actual form of Migraine.
Yes, you should have this recent episode checked out. Whenever our patterns change or we have new or frightening symptoms, we need to check in with our doctors.
Please let us know how it goes?
mary – whenever there is a change in your headache/Migraine pattern it’s time to have a pow-wow with your doctor. Migraines do have a tendency to change through time, but it is also a diagnosis of exclusion and this means everything else needs to be ruled out first. The ICHD-II recognizes these now as acephalgic Migraine. The other terms are old, no longer recognized, and obsolete because they don’t reflect what’s really happening – Migraine with aura and no pain.
Just found this forum and have some history and questions:
2009 during a high stress time I had an episode where I didnt feel well and then became major sleepy. couldnt stay awake. Son called 911 and on way to hospital i saw double of all cars going by. kept me in hospital for a few hours and released with no known issues. slept whole time there
2012–few months ago..driving with different son. drove very erratically speaking about the yellow lines weaving in and out of road. Almost crashed car ( hit a mailbox a little ) and then saw double again of everything as I tried to pitch baseball practice. again taken to hospital. admitted for 2 days as eyes acting funny. cat scan and everything came back ok
Flew to NC to see a top neurologist at Duke where we spoke of silent migraines.
Dec 1 and again today I have had neck pain, tired, bit of light sensitivity and i think another episode coming on. wont drive.
do these symptoms sound like migraines to you folks?
what do you do for them?
miteybucs – It sounds like you do not yet have a definite diagnosis of Migraine, so that really is the first place to start. A neurologist is a specialist in the central nervous system, but not a specialist in Migraine and headache. Here is a link that might help you find a board certified specialist to help you with your diagnosis and treatment: https://migraine.com/blog/looking-for-a-migraine-specialist/
Here is a link to Part 1 of Teri’s Migraine Management series that may be a helpful place to start: https://migraine.com/blog/migraine-management-essential-diagnosis-and-doctors/
The important thing to remember here is that each of us is different. Our Migraines are all different too. This means our management strategies need to be very individualized.
This is a complicated question with no real answer! Getting educated is so important. From that point, the rest is much easier 🙂
By Lou Brooks
I can’t stand the silent migraines I get. This morning I woke up with an aura over most of my sight, an hour later it had gone.
The worst part of my silent migraines is the impact it has on how I feel a few days afterwards. I just become really sketchy, I can’t seem to gather my thoughts or put them into words and I generally feel apathetic towards EVERYTHING.
It’s really hard to explain the impact it has on me to the people around me, particularly at work. Because I don’t LOOK sick when it happens, I feel like people truly think I’m making it up or that its just like a headache and something you can just ‘shake off’.
I’ve been to a specialist, who put me on a bunch of different meds throughout the years and it has made no difference. But without a diagnosis of why it happens I just feel so helpless.
Does anyone here have any natural remedies that might help preventing/treating these symptoms?
Glad to know that I am not alone in my struggles.
Louise Brooks – Migraine is a genetic, neurologic disease over which we have little to no control. The cause is in our genetic makeup. Although we can have triggers that make it more likely we will have an attack, controlling them can be nearly impossible.
Do these people *believe* in epilepsy, or autism or ADHD? These are also neurologic diseases that you can’t necessarily see, yet certainly exist.
You’ve hit on a sore subject for many of us. At Headache on the Hill in 2011 I was teamed with a wonderful woman who was a breast cancer survivor. She had something to tell legislators that was really important: She told them all that breast cancer was a breeze compared to Migraine. Everybody understands breast cancer, it’s treatments etc. People don’t understand Migraine, and there is still such a terrible stigma that it makes it hard to even discuss intelligently because most people have pre-conceived ideas of what it is. Unfortunately those are most often based on misinformation myths and stereotypes from the days when it was considered a hysterical women’s disorder based on stress and emotions. By that point in time they had figured out epilepsy wasn’t demon possession, which shows some hope for us I suppose. We still use the phrase “throwing a fit” like people use “What a headache” and the meaning of it has changed. Hopefully we can someday change the meaning of “headache” and Migraine so that it is respected for the disabling disorder it can be.
Please check the forum out for a big list of natural remedies that you might want to investigate or talk about. There are a lot listed there for you! 🙂
By Lou Brooks
Thank you for your response, as I said before just knowing that there are others out there who have similar experiences helps me understand and accept my condition more.
I too hope that one day people will understand how extreme and disabling it can be to suffer from regular migraine episodes.
I have suffered from them since the age of 6, but my ‘silent’ migraines have only been happening for the last three years and yet I still hope one day I will be migraine free!
I will check out the forum and look at natural remedies.
I’ve had migraine w/o aura for about 18 years and in the last year or so they have been changing. I now have chronic migraine. The other day I had my first silent migraine. While it was nice not to have the head pain, it seemed like all the other symptoms were magnified without it. Perhaps I was just noticing them more because I didn’t have little demons stabbing my brain. Definitely not a fun sensation!
By Nancy Harris Bonk Moderator
I can only imagine that must have been an odd sensation. It is however, a good idea to check in with the doctor any time we have new or different symptoms and/or a change in our migraine patterns. This certainly qualifies as different for you.
Let us know what he says, OK?
Until recently I had never heard of Silent Migraines, mine had always been the full blown monsters w/ my head about to explode. I am currently on my 3rd neurologist (I think this one’s a keeper) & he seems to have found a magic cocktail that somewhat controls my Migraine headaches (meaning I’m not having a Level 8 headache EVERY DAY).
However, the Migraine Monster decided to strike out in a different manner… I’m suffering w/ some serious vertigo, as in I move, I fall down. To rule out the inner ear, I saw an ENT, everything’s all clean & spiffy – its the Migraines (& I was begging him to tell me I had an inner ear infection, haha)… and I’ve had the other Migraine symptoms rear their ugly heads along w/ the vertigo so apparently its Silent Migraines w/ vertigo holding the starring role…
Does anyone else suffer from some serious vertigo so bad they have difficulties just doing daily tasks, like washing/combing my hair, walking around, driving, working at a computer? Oh & not just movement sets it off… smells do – flowers, perfume, cigarettes, etc… sounds – horns, dogs barking, loud music, etc… lights – car headlights, flourescent overhead lights (the battle rages over ADA), any flashing lights, etc…
Any advice? HELP!!!!!!!!!!!
YES!! I have debilitating vertigo. I get Botox for the chronic migraines, which helps with the severity and frequency of the pain aspect of migraine, but does not deal with other symptoms. The vertigo has got to be the worst, it affects everything I do, and consequently the list of things I DON’T do, has grown so long.
It is not my ears, BPPV or “merely” motion sickness. Any movement as you have said, Angel, panning shots on TV, oncoming traffic in the car (I don’t drive for this very reason), people walking either past or toward me in the store, the family moving around in the kitchen, even trying to unload the dishwasher,BAM, the world tilts and down I go!
I also have recently found that some of the odors may be described as aura, just as real odors can trigger a migraine, these are not real odors, as there is no basis for them. Do you have any trouble with your neck, any numbness or tingling of your arms or legs? In trying to figure this vertiginous nightmare out, the physiatrist thinks it may be caused from bulging discs in the cervical region.
I’d like to know of any tips or tricks you have discovered to maneuver through your day / life while the world merrily spins on. Right now I do not leave home except for PT, or some other Dr. appointment, and I hold furniture, counters, walls, and move very purposefully through the house.
I know we can not be the only ones who experience this, and is it a raging battle!
By Nancy Harris Bonk Moderator
I’m so sorry that no one has responded to you yet. Let’s see what we can do to help you.
As you can see there are quite a few people who suffer from vertigo. Let me share this information with you that may help; https://migraine.com/blog/migraine-comorbidites-migraine-associated-vertigo/.
We also have information on silent migraine I’ll share with you in this link; https://migraine.com/migraine-types/silent-migraine/. I’m glad you like your doctor, but is he knowledgeable enough in migraine disease? See the thing is that neurologists may be very good doctors, but have a hard time being experts in any one area because they treat so many different conditions like MS, epilepsy, stroke and more. Here is some information on how these doctors are different; https://migraine.com/blog/how-are-migraine-specialists-different/ and if you want to look for one, you can find that information here; https://migraine.com/blog/looking-for-a-migraine-specialist/.
I hope this helps and let us know how you are doing, OK?
By Nancy Harris Bonk Moderator
Have you seen this information on dizziness and migraine; https://migraine.com/blog/migraine-comorbidites-migraine-associated-vertigo/. It may be helpful.
Cervical issues can certainly trigger a migraine attack in fact, studies have shown this. Let me give you that information too; https://migraine.com/blog/migraine-symptoms-neck-pain/ and https://migraine.com/blog/cervicogenic-headache/.
Let me know if this helps,
I know this is an old posting from you, but I too suffer from these silent migraines. No headache, only the zig zag aura that lasts 10-20 minutes then disappears. Mine started when I was 54. Was sitting reading a book when the words became blurry then the aura started. Needless to say, I was scared to death and figured it was a stroke. Had never had a headache in my life until that point other than an occasional “hangover”! I am now 71 and since that time have had sporadic attacks. Early on they came like twice a year but increased in frequency over the years. They continue to be very sporadic….sometimes months apart, sometimes weeks, sometimes days. The most normal routine for me is to have one every 5 or 6 weeks, but as I said that is very variable. They continue to frighten me since new research links these types of migraines with stroke, but I am very grateful not to suffer the terrible headaches that so many people on this forum have to deal with!
By Nancy Harris Bonk Moderator
Thanks for sharing your story with us. Episodic migraine is defined as 14 or fewer days of migraine and/or headache pain a month. It’s good to hear you only suffer occasionally.
We have some information on silent migraine that may be helpful for you; https://migraine.com/migraine-types/acephalic-complicated-migraine/ and https://migraine.com/migraine-types/silent-migraine/.
We hope to hear more from you,
Hello, have just found this site. I have been diagnosed with silent migraine after 4 years of much shoulder shrugging from the NHS and prescriptions for anti-depressants. I’m researching into it like crazy now. One question I had is can it make you feel I’ll for literally weeks? I’ve been unwell for 6 weeks now with the occasional not so bad day. Does that mean I’m having a series of migraines with no let up, or can one make you feel awful for so long? I can’t see an end and a beginning to them so I don’t know if it’s one or several. Thank you.
Oh dear, I’m so sorry you’re having so many problems. I do understand them though.
Please get yourself to a Migraine and headache specialist. Did you know there are over 300 different headache disorders? Many of them can mimic Migraine, as can some structural issues that can often be treated. Here is a link to help you find the closest specialist that will hopefully be able to help you:
Looking For A Migraine Specialist? https://migraine.com/blog/looking-for-a-migraine-specialist/
We can’t help to diagnose via the internet. That would be unsafe for us all. But your symptoms have changed, and that is a very good reason to get to your doctor asap.
I can say that, acephalgic (silent) Migraine can be very confusing, both for patients and their doctors. There are several stages to a Migraine, and all of them can cause some symptoms that could be contributing to your feeling of unwellness. Understanding the stages may be helpful for you. Here is a link to help:
What are the stages of a migraine attack? https://migraine.com/blog/what-are-the-stages-of-a-migraine-attack/
Migraine Phases https://migraine.com/migraine-basics/migraine-phases/
Depending upon how you have been treating your Migraines, it’s possible that Medication Overuse Headache may be something you need to have a chat with your doctor about too. Here is some information about that:
Help! How Can I Not Overuse Migraine Medications? https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/
I hope some of these may be helpful to you. If you have other questions, please ask them. Honestly, you need to get to your doctor for an examination and a conversation. It’s unlikely this is a serious problem, but we don’t want to be on the wrong side of those odds, and only a doctor can tell us that.
Thank you Ellen. I do have a diagnosis. I live in London and I’m afraid our Public Health Service, whilst they try their best, is not up to scratch, hence my diagnosis has taken me some years. I’ve now taken out a loan to go private. I just wondered if migraine, silent migraine, can make one feel awful for weeks on end, is that ‘common’ or unheard of?
Thank you for your response. In the UK, I’m afraid to say, the national health service is not great and even the neurologists I’ve seen do not have any convincing insight. They will tell me what I have, but with no support.
The UK actually has some pretty good resources and some amazing specialists. Why don’t you start with contacting the Migraine Trust. They have some links I’ll share here:
Hi… new here. Never really talk about my pain- migraine or otherwise -except with my Sister-in-law and husband. Even then I don’t talk too much about it, I want to be normal, not pitied. I have had my migraines under control for many years – ie: I know my triggers, relaxation, meditation, and the like. Migraine and I came to an understanding finally about 10 years ago… Six months ago I started getting a nagging migraine off and on. Nothing I couldn’t deal with. BANG! Started vomiting and seeing double amongst all the other “signs” about 3 months ago, two days later I was in the ER with a humdinger of a migraine – this one brought me to my knees…Now I live in constant fear that it’s going to happen again, but that’s another story. The biggest issue – I have had ocular and aural migraines for 3 months non-stop! The brain is an amazing thing.. Somehow it is making sense of the multiple computer monitors, keyboards, husbands.. I wear glasses occasionally as I have a stigmatism that causes binocular double vision. Now I see 4 of everything…. Talk about vertigo. I read all the time have always “eaten” through books, now I spend half my time chasing the words around on the page – which is something akin to trying to catch greased monkeys. The stares I get when I have to lean against the wall just to catch my breath, try to make sense of the chaos around me. Every step has become an adventure, don’t even get me started on driving.. Yes, I do. Why? Because I have to (its only a few miles to work and home and teaching)… what is my biggest fear? That this and back issues are going to keep me from being successful, and that that ice pick is going to try to dig out my brain again.
I’ve seen an eye doctor; everything is fine (the medical doctor kind). Neurologist tried DHE (about killed me), the headache cocktail helps initially for the pain. (there are no migraine specialists in my area :|) Just frustrated that I’m living in this mad world 24/7… has anyone else experienced these silent migraines non-stop like this?
By Katie M. Golden Moderator
I’m so sorry to hear you are going through this. It must be really difficult to get through everyday life when you can’t see. I can’t imagine! It sounds like your brain is stuck on repeat. It just keeps firing Migraines. I know you’re trying hard to power through, but maybe you should take some time to rest. I worry about you driving in this condition.
You said there are no headache specialists in your area. Because of your vision issues you may want to see if you can find an neuro opthamologist. They are not easy to find, but may be worth traveling to find one. This type of doc is a neuro AND an opthamologist that specializes in diseases affecting vision that originate from the nervous system.
And don’t worry about not being successful. Just focus on getting this under control and taking care of yourself.
I have had migraines since my early teens. When I was 16 I was diagnosed with epilepsy because of grand mal and petit mal seizures. I am 34 and in October 2012 I had a severe vertigo attack. I had never experienced that before and would not wish that on my worst enemy. The second attack was worse. Couldn’t stand or control and body functions. One of the worst struck at work. It happens within seconds no warning. I went from perfectly fine working day to by the time I finish this sentence full blown attack. It was so embarrassing to be taken to the ER by a co-worker and they said nothing was wrong and they thought I made everything up. They didn’t even do any tests and my neurologist wasn’t even interested. Since then I have had a total of 8-9. I rate them on a scale of 1-10. 10 most severe. My last one was a 5 about a month ago. I realized it helped when I was in a bright room, hard chair, sitting up. As soon as I tried to lay down it was 10 times worse. So I sat upright in my sons desk chair for hours. Is that a normal symptom of silent migraine? My migraines are always very painful with light sensitivity. I also can’t stand that diagnoses of “Silent Migraine”. That sounds made up for something they don’t know.
By Katie M. Golden Moderator
There are a few things about your symptoms that are not usually related to “Silent Migraines.” If you are having head pain with your aura, it would usually be considered a Migraine with Aura. With silent Migraines there is rarely any headache. A typical episode lasts for 15 minutes to an hour and you see the aura the entire time.
Also laying down in a dark room is what usually helps most people. Sitting up in a bright room is a little unusual to feel better. But you know what- not everyone responds to Migraines the same way. Is it possible that what you are experiencing is related to vertigo or epilepsy? I don’t know enough about either, just a suggestion for you to explore with your doctor.
Hello, I am a 35 year old female. I have been experiencing dizziness, pampitation, low BP, blurr vision, numbness and tingling on finger tips and toes, sensitivity to sounds and light, weakness in legs as well. I have been experiencing all these symptoms non stop/constant/continuously for the past 7 weeks. After viewing my reports (blood test, MRI, echo, ECG,48hr holtor monitor,neye test and hearing test) my neurologist believes I might have acephalic migraine. I wanted to know if any one has experienced all these symptoms for this long duration and how long did it take them to get back to normal?
I also I have a few questions:
acephalic migraine lasts between 3 hrs to 72 hr how can mine go on for weeks?
Having silent migraine such long duration, can it be dangerous?
I look forward to a response soon
Hello MAK, I have been switched between diagnoses of silent migraine and Menieres for years, every time I see a health professional they change their minds. I get all the symptoms you get and have had them for 6 years, but as time goes by they are less frequent. I take Amitrptaline and I recently stopped them to see if it was Menieres and I felt really bad, so maybe it is. What helped me is plenty of sleep, staying away from all forms of caffeine and mild exercise. Laughter helps a lot too! I still don’t know which diagnosis is right, but stay strong as it will only get better.
The brain a curious thing and needs a bit of TLC. One of my questions to a really good Neurologist I saw was ‘how can it go on for weeks?’. She said the rest of the body is like Lego compared to the brain, you need to look after it, which made sense. I find taking propranolol makes it go quicker when I’m in the midst of it.
Thanks Kernow. I have had regular migraines since my teenage . This is new for me . I guess with time I will get used to it too . Thanks for your advice and quick response . I will try to follow your advice
By Nancy Harris Bonk Moderator
Thank you for your questions. It sounds like you are going through a rough time right now, I’m sorry about that.
Kernow gave you some great suggestions, let me add a few as well. If you’ve not kept a detailed migraine diary recently, I would encourage you to do so. This will help determine any patterns your attacks have, help identify triggers and what medications are effective in treating your attacks. With all the apps out there its easier than every to keep a diary. Migraine.com has the Migraine Meter you can look at here; https://migraine.com/blog/new-migraine-meter-app-available-on-itunes-and-google-play-for-android/ or a Google search will show you lots of them. Here is information on keeping a diary; https://migraine.com/blog/keeping-migraine-diary-basics/.
If you’ve not seen a “true” migraine/headache expert, I would encourage you to do so. Migraine/headache experts are different from neurologists as they are board certified in headache medicine whereas all neurologists are not. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, epilepsy, stroke, Parkinson’s’ and others. Migraine/headache experts treat one condition all day, every day, migraine and headache. These doctors can make a big difference in your life. Take a look at this information on how they are special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.
I hope this helps
Thanks Nancy . I will look into it
By Nancy Harris Bonk Moderator
Great, M.A.K. Please let me know if you have any questions I can help you with.
I used to get migraines with the aura,the sensitivy to light, nausea and terrible headache. However here in the last few years I don’t get the terrible headache where I have to go to a dark room and suffer it out. But I still get the aura occasionally. I thought I was over getting migraines until I started reading what people said in this forum. Now I think I still have them because I get the stiff neck the yawning thing. I’m always sensitive to light.I suffer with IBS which I had no idea was linked to migraine.I will get headaches occasionally but not severe. I have balance problems, but I had a concussion years ago so I thought my balance issues were because of that totally.wow! I was shocked at some of the things I read about symptoms that are linked to migraine. They are symptoms I’ve had for several years.I’m always somewhat sensitive to light. I can’t stand bright light it will give me a headache if I’m in it very long.one symptom I’ve started having in the last couple of years is with my vision I’ll feel like I looking through a fog sometimes
It last for about an hour and go away. Has anybody else experienced this? Also I can’t take tripton because I have high blood pressure and heart disease.well that’s my story. Glad to meet y’all.
By Nancy Harris Bonk Moderator
Thank you for sharing your story with us, I am however, so sorry for not getting back to you sooner!
It’s possible for our migraine patterns and symptoms to change over time and when this happens it’s important to let our doctor know. Have you had a chance to mention this to him/her?
Sustaining a concussion can make out attacks more difficult to treat. I sustained a traumatic brain injury (TBI) or concussion almost 20 years ago and haven’t been the same. Let me share this information about concussion and migraine with you; https://migraine.com/blog/migraine-and-concussion/.
Silent migraine can be as debilitating as other migraine attacks. Take a look at this information on silent migraine here; https://migraine.com/blog/bouts-of-nausea-headacheless/.
You’re right, IBS and migraine can be comorbid conditions. This means they can occur at the same time but are not caused by one another; https://migraine.com/blog/ibs-of-the-bowels/.
I hope this information helps,
Hello all! Here’s my story…
I believe I had my first migraine in August 2001, and it was the first real pain I have felt in my life. Honestly, I think that was my first pain in my head in my entire life. I’d mark it as a 10, akin to giving birth (I have three). I didn’t know what it was was, and I didn’t go to the doctor for it because I was out of town for work and I managed to sleep it off.
Then in 2007, I had chronic vertigo, which changed to migraines without aura in 2009. My trigger was hormonal due to the birth of my first daughter, and I was able to manage it with topamax and fioricet. I had to stop the treatment in July 2009 because I got pregnant with my son, but from his birth in 2010 to 2012… I was migraine free, even during my periods!
And then I got pregnant in May 2012 and had a migraine when I was two months pregnant. I knew I was having a girl. She was born in 2013. Ever since I got my period back after her birth, my body would get its gift from Mother Nature in a TIMELY fashion (first time in my life) and the migraines would follow. I was able to treat these with Aleve. Easy, right?
Then comes March 2016: I have been balls to the wall on a project, working 18-20 hours a day since mid-January. I started experiencing periods of time when I couldn’t form sentences, or I was slow to speak when I’d explain something at work. Focus was hard to come by. Typing out a “quick” email took too long. Fatigue and depression came, too. I thought I was just tired from working those hours. Co-workers started noticing my slow speech and my mistakes here and there. It was terrible. It was like this for about two months. I was so embarrassed.
Finally the project started slowing down around the end of May and I’m my kids got out of school. June came, and one day the fingers on my right hand started tingling, then my hand went numb. The sensation then moved up my arm, then to the back of my neck. I got lightheaded and dizzy, but not like my old vertigo episodes. I couldn’t grasp a solid thought and couldn’t get my words out, everything got loud and sounded like one big sound, the computer monitors hurt my eyes, and the old feeling of the ice pick stabbing the back of my eye and ear was back. I wanted to cleave the right side of my head off so the pain would leave me…
Within a week, I went straight to the Mayo Clinic. They have a new migraine specialist and he says that my migraine has changed to migraine with an atypical sensory aura, and its chronic. The episodes that I had back in March? Those were silent migraines, most probably triggered by high stress. I’m also chronic. I have had 26 migraines from July 12 to today. Most of the migraines are a level 4 or lower and I’m able to do most things, however the ones that come with my period are debilitating because of the pain and last more than 24 hours at a time.
Most of my migraines are silent migraines, and they are terribly embarrassing. When I have them, I don’t have the “migraine face” and I don’t look in pain. Sometimes, I’m really hyper and happy before I get a silent migraine and when it finally strikes, my co-workers are stunned that I can’t speak in complete sentences, or that I forget what I just said or was doing. There’s no medication I can take to make this disorientation to go away and that’s why I feel they are horrible. People don’t believe my “pain.”
Since I have been diagnosed last month, I find myself in the work bathroom crying just to get the frustration out. I want to believe that I’m making this stuff up and I can stop it at any time. But then I feel my fingers tingle and it’s real, and I cry. Most of the time, my husband is supportive, but there are times when he forgets and gets angry with me when I don’t make sense. He even made a comment under his breath when I started to have one when we were out, “I’m paying three-grand for this?!” and I knew that he was referring to my last medical bill. I was taken aback. Needless to say, that helped trigger a big one.
Reading everyone’s stories here have helped me get through my episodes. I am looking at everyone’s reliefs as well. I don’t want surgery. I do know that if I run every day, my episodes aren’t as intense. When I do miss a run, the intensity increases. Right now I’m on supplements for preventive, and midrin for abortive. I was on toradol, but I can’t remember why I asked for midrin thanks to my memory loss. Since then, I have been diligent on keeping a log.
I hope I find some relief to my confusion, and I hope you find relief, too. We are in this together.
Hi. This is my first post to any forum ever. It feels strange. I got here late at night reseaching my symptoms. I have been having a number of muscular and neurological symptoms for a year or more. After many tests and bloodwork, a neurologist diagnosed me with “migraine without pain”. The great amazing wonderful news was that my nervous system and brain seems quite in tact. The down side is that I am having a hard time syncing my symptoms with what I read about silent migraines. I will be honest that I do not seem to think as clearly as I recently did, so research gets muddled. My doctors office (reasonably so) does not have the time to explaim it all, so I feel a disconnect.
My symptom list is long. But my most concerning to me these days are a continuous weakness around my miuth, to the point of accidentally biting my lip and drooling and muddled foggy head. Most of my other symptoms come and go. But the fore mentioned are quite constant. My other symptoms include body pain, numbmness, visual changes, lack of balance and coordination, poor grasp, change of gait. All or most of thsee I can find as migraine symptoms, but even though they come and go, they often persist for weeks rather than days. It is all very disorienting. Sorry this post is so long. Any thoughts? Anyone else have symptoms that just stay with you?
…I also continuously have electric shock sensations throughout my body. Thank you for your thoughts.
By Katie M. Golden Moderator
Nancy gave you some great information. I wanted to chime in on the part where you mentioned you had electric sensations throughout your body. In the past year, I have developed this as well. My headache specialist referred me to another neurologist who specializes in movement disorders. At this point, I’ve been diagnosed with restless leg syndrome and periodic limb movement disorder. This article I wrote about it may help you:
Let me know if you have any questions.
By Nancy Harris Bonk Moderator
Welcome to the discussion forum – we’re so glad you’re here! Let me see what information I can give you that may be helpful.
It is possible to have migraine without the headache phase, called acephalic or silent migraine, which you can read more about here: https://migraine.com/migraine-types/silent-migraine/.
Having said that, it’s more common for symptoms to end once the migraine attack has ended, but possible for some to linger. You may want to keep a detailed migraine diary for a few months to track symptoms, triggers and any patterns your attacks have. Most doctors want us to do this and it sounds more daunting than it is. With all the apps out there, keeping a migraine diary is easier than ever. I actually use paper and pen, it seems to work better for me. I print out a monthly calendar and mark when I have a migraine, what medications I’ve used, headache days etc. This article has more information on how to keep a migraine diary that may help; https://migraine.com/blog/keeping-migraine-diary-basics/.
If you’re concerned about lingering symptoms, keep a diary then share it with the doctor and continue to search for answers.
I hope that helps, please keep me posted on how you are doing,
Hello staycowgirl (great name!). Yes, I get lots of the symptoms you describe, especially weak legs and balance problems, sometimes they last for weeks and weeks without let up. You need to try and focus on your triggers and a big one for me is lack of sleep, so I then sleep for 10 to 12 hours a day for about a week and it feels better eventually.
I was misdiagnosed for six years with all manner of things, now I know it’s silent migraine I take preventative medication and rescue medication if I need to. I was tasking loads of beta blockers as preventative but they didn’t work, however they do work for others, it’s finding what’s right for you.
If I can give you any advice, it’s drink lots of water, cut down coffee and tea a lot and get plenty of rest. Trust me, this phase will pass and you need to work towards ensuring the next episode is further away and smaller in length.
I´ve had silent migraiens since I was 10. (I´m 38 now.)
So I don´t get the headaches, but the aura symptoms last between 2 and 6 hours.
Every attack leaves me quite destroyed. I go almost completely blind, there´s that painful needle-feeling that searches its way through my body like a snake, and there´s usually also a phase where I can´t form words anymore. I just lie on the bed and try to get through those hours, unable to move, speak or see. It takes me 3 to 4 days to recuperate.
Does anybody here have experience with prolonged auras?
By Nancy Harris Bonk Moderator
I’m sorry to hear about your extended silent migraine symptoms – that must be very frustrating.
I don’t have any experience with prolonged aura symptoms, but hopefully others will be along shortly to share their experiences with you.
Have you noticed any consistent prodrome symptoms? Sometimes treating during prodrome (the first phase of a migraine attack) may help stop a migraine attack from progressing. Keeping a detailed migraine diary can help identify these prodrome symptoms, any patterns the migraine attacks may have
and triggers. Here is information that may help with this; https://migraine.com/blog/keeping-migraine-diary-basics/.
I hope this helps!
thank you so much for your reply!
I know about prodrome and I do notice some symptoms (switching words, for example), though it´s not always very clear. I´m very hesitatant about using medication, since some types of medication I tried just made the attacks last longer.
I read the book “Migraine Brain” by Carolyn Bernstein, and I´ve also bought “Migraine” by Oliver Sacks, though I haven´t gotten through that one completely yet. Those books have been a great help. The sad thing is that I´ve learnt more from those books than the neurologists I´ve seen have been able to tell me. Only the last neurologist told me that someone who has aura migraines shouldn´t take anticonceptives.
Anyway, thank you again for reading this, dear Nancy. You must have so much work ploughing through all the messages on this site! I wish you a beautiful New Year!
By Nancy Harris Bonk Moderator
Thank you for your kind words! Happy New Year to you as well.
If your interested in another migraine book, I really enjoyed “A Brain Wider Than the Sky: A Migraine Diary” by Andrew Levy.
I´ll look into that!