silent migraines? UPDATE in original post

[Cottonwood]

DD14 was diagnosed last year as having migraines.  She's never has the headache you think about and up until last year she had a once a year thing where she'd feel faint, felt tingly, etc.  She did faint a couple times.  We had imaging and full neurological work ups done and everything checked out.  Her neurologist just said it 'must be' migraines and gave a bit of education on that, encouraged lots of hydration and healthy food but said he didn't think she was near the level of needing meds but could if we wanted.  Now, no episodes whatsoever for over a year.  

 

This past Friday, around 10 am she came to me and said she had a blank spot in her vision in her right eye that looked like she'd been flashed with a camera but it wasn't going away.  She's never had auras as a symptom before.  I explained what it might be and offered to 'up' her chiropractic appt to try to help out.  Chiro is very helpful for her.  I had an appt scheduled for today (Monday) but they said they could get her in. Her neck is always usually in need of an adjustment so they adjusted it and the rest of her body.

 

We got in the car to leave and before we got to the first stop light, she said her right hand went to sleep.  Once we got home it had gone to her elbow and now she couldn't make her hand work.  I laid her down and rubbed her neck a little thinking maybe the adjustment pinched a nerve and I could help.  As I did that she said her hand felt better but her face was numb and then she lost all feeling in her right side of her face, and pretty soon, her tongue wouldn't work and she couldn't talk.

 

I called the chiro and said we were coming right back.  As I tried to get everyone back in the car, she started crying and saying she just didn't understand.  She then became very confused and disoriented and by the time we got back to the office, she was saying she didn't know who WE were, and then got very upset because she was trying to read but couldn't recognize the...the...the?  She was trying to say letters.  It was EXTREMELY upsetting.  

 

The chiro layed her down and used traction on her neck and some massage.  DD started backing out of the episode and within 20 minutes was talking fine, had all feeling, cognitive function was back, she could read, amnesia gone, etc.  She was exhausted.  The chiro explained that she thought that it was sensory oriented only because she kept watching for motor disfunction such as sliding facial features or twitching of her limbs on the right side and nothing like that was happening.  Her suspicion was 1)that she may have begun another migraine episode (only evidence being the aura) and the adjustment  made it worse or that 2)a nerve was severely pinched and caused all the dysfunction until it was relieved by her in the manual things she was doing.  

 

She told me to watch her closely and if there was anything at all that worried me take her to the ER.  So I just watched her all weekend because she was her normal super energetic self and had no symptoms ..only the remaining small headache that she called a stress headache over the incident.

 

I decided to make an appt first thing today w/ her ped and he ordered an MRI for this afternoon and some other lab work.  So we are trying to rule out anything else..other than migraine symptoms.

 

The dr. did mention silent migraines and one of the techs in the lab said his daughter has silent migraine syndrome so bad that when she has an episode, she looses function of some things on one side, gets slight amnesia, is disoriented, has trouble talking....etc.  It sounded close to what DD experienced.  I had no idea such a scary set of symptoms  could come from something like this.  Does anyone else have experience with this sort of thing?  We are really new to the idea that she is even a migraine sufferer because she literally only has any symptoms once a year, in the summertime but NEVER NEVER like this.

 

I am doing some research and found this on WebMD...I dunno, is that reputable?  

 

"Emotional and mental symptoms include:

confusion (check)
irritability (check)
euphoria"

 

"Aura symptoms include:

wavy or jagged lines
flashing lights (check)
dots or spots in your vision (check)
blind spots (check)
tunnel vision
disruptions in hearing (check)
auditory hallucinations
distortions in smell or taste
numbness, a pins-and-needles feeling, or other unusual body sensations (check)
difficulty remembering or saying a word (check)
other language difficulties (check)

Odd sensations in a body part (check) 

Clumsiness or weakness in the limbs (check)
Vertigo (check)

Amnesia (check)
Confusion (check)
 

migraine.com said triggers could be emotional stress (we are moving across the country in 11 days), hormonal changes (she's pms'ing), dehydration (yes probably, trying to get her to drink is impossible), poor nutrition (kinda).  

 

Sigh..........the symptoms were so intense and scary.  I'm still weepy over it.  And the migraine thing is so new and surprising.  Who can share or help educate us??

 

UPDATE:  Earlier this week DD had an MRI and a vast amount of blood work done.  MRI came out clean and blood work was all within normal limits for everything from Lyme (I know....  doesn't always show up) to inflammation markers to glucose levels.  By process of elimination this does seem to be a migraine incident.  The Dr has heard of all of the symptoms except the cognitive loss.  We went back to the Chiropractor (I was due for an adjustment) and he told me it worried him so badly that her and his wife  and his father (all 3 are chiros and his wife is a sports medicine practitioner) took the entire last weekend to do a 'case study' of what happened to DD and from what they researched, about  1% of migraine sufferers actually have a severe adverse reaction whereas MOST migraine sufferers find relief of some sort.  Until now, DD has gotten great relief when her neck stays aligned.

 

I have been searching for what might have been a trigger for her and the only things I can think of are: 1) the day before she went off with friends and when she got home she told us of all this junk food they stuffed themselves with and...if MSG is a trigger, she got a crap load of it.  It's embarrassing what she ate that day.   18 hours later, she had this episode.  

 

2)before I took her to the chiro, she had only the optical aura as a symptom so her episode had begun.  DH, me, her chiro and her dr believe that the manipulation of the chiro visit probably threw her into a bigger episode than she might have had w/o the visit. So from now on, if she's showing ANY signs of a migraine, we are going to wait until it's WAY over before taking her to the chiro.  Her chiro was explaining how stimulated the nerves get during neck adjustments ..which was very interesting to me.  If this theory is right, her nerves became completely over stimulated at a time when they were already symptomatic.  

 

The most frustrating part for me is that her episodes are so completely infrequent that there's no pattern or way to track what helps or hurts her in an episode.  And if this sort of thing starts up again, I sure want to know what can shorten it or help her out.  But everything is a guess.  We have cleaned up her diet and we insist she drinks 2 quarts of water a day at least, giving her extra Vid D, B vitamins and a couple other additions.  She has her last followup visit w/ her PED this Wednesday morning to go over everything one last time.  Once we move ot FL we are going to get scheduled with a neurologist to try and get more migraine education.  The good part is that everything terrible scary and possibly fatal has been ruled out.

[AnnE-girl]

I have a relative who has a history of normal migraines in her twenties, visual migraines in her thirties, and one scary migraine similar to your daughter's just before she turned 40. Not that age really has anything to do with it, other than to show that her migraines have changed over time. During the episode last year, it was if she had had a stroke. She couldn't remember family member's names and was very confused.

 

As I was typing that out, I remembered that another relative had a migraine like that in high school. She ended up admitted to the hospital to run all sorts of tests and for monitoring because there is a family history of a rare genetic disorder that can cause similar symptoms. Everything else was ruled out, so a complex migraine was diagnosed.

[Cottonwood]

I have a relative who has a history of normal migraines in her twenties, visual migraines in her thirties, and one scary migraine similar to your daughter's just before she turned 40. Not that age really has anything to do with it, other than to show that her migraines have changed over time. During the episode last year, it was if she had had a stroke. She couldn't remember family member's names and was very confused.

 

As I was typing that out, I remembered that another relative had a migraine like that in high school. She ended up admitted to the hospital to run all sorts of tests and for monitoring because there is a family history of a rare genetic disorder that can cause similar symptoms. Everything else was ruled out, so a complex migraine was diagnosed.

 

 

Do you happen to remember how long the complex ones lasted for your family?  DD's was over in about an hour.

[AnnE-girl]

I believe it was a couple of hours. For the first, her husband took her to the ER and she started to come out of it while there, but given her symptoms she was rushed back to be seen immediately. The second was about ten years ago, so I don't remember all the details. I think it was several hours.

[Catwoman]

I don't know anything about silent migraines, but I just wanted to say I hope the MRI and lab work results are perfectly normal and that this turns out to be something very minor and treatable. :grouphug:

[clemota]

I get ocular (visual) migraines so I can sympathize to the absolute weirdness of some types of migraines.  I get fractal vision/lights in both eyes but no other symptoms.  It lasts for about an hour but during that time I can't do much - can't drive, can't read, can't watch TV, and can't rest (the fractals are still visible with my eyes shut - like seeing an afterimage after looking at a bright light.)  This is sometimes followed by a mild headache. 

 

I'm sorry your daughter is dealing with even more symptoms.  Did they prescribe any medication for her?  If she's getting an aura, can she learn to recognize them and take the meds at onset to prevent some of those other symptoms?   If I catch an ocular migraine at the beginning, I can cut the time it lasts in half and prevent a headache after. 

 

:grouphug:  I can't imagine what it was like for you to watch her go through that.  I hope she'll be ok for a LONG time now, with no other major episodes.

[Love]

.

Edited November 19, 2015 by Love

[VeganCupcake]

I had some after my oldest child was born. One of them involved being unable to speak normally. I kept trying to say "Get the baby" to DH, but it kept coming out something like "Berry berry", over and over again. I had also been having the auras periodically during those months. We went to the ER but it had resolved by the time we got there, so within 15 or so minutes. I had a CAT scan and nothing appeared to be wrong.

 

Since then, I've been more careful about my B12 intake, since something I read indicated that that could be an issue. I've also never been quite so exhausted since then. She was a challenging baby.

 

I haven't had one in years.

 

Hugs! It was scary!

[Cottonwood]

Thank you everyone.  I haven't slept much since then and told DH i would rather DIE then see her go through that again.  It was the scariest hour of my life and I have had some doozies.

 

When we went to the Dr today, during some lab work, she passed out in a seizure like way while I was right beside her.  I was rubbing her arm and she was crying and saying, "what is happening to me???" and then she went sideways with tongue hanging out and eyes back in her head.  The tech shoved me out of the room and hit the red button and and every life saving device rushed past me and the door closed.  Turns out either a drop in blood pressure or anxiety..........   I have been through enough.  And we are in the stress of moving away from dearly beloved friends and pulling up deep roots.  Your words are comforting.  Trying to just remained calm and not cry around her until we know what is going on.  The best case scenerio for now would actually be migraine related, according to the doctor.  Poor child........

[J-rap]

Do migraines run in your family?  My daughter has had all of those symptoms at one time or another with her chronic migraines, which she has daily to some degree.  Her most common symptoms are the weird vision things (which change -- from colored to distinct lines to polka dots to a dull gray film to one big check mark!), tension in her neck and upper back, tingly hands, mild confusion, severe vertigo, clumsiness, and of course the headache itself.  (Though one of my other kids used to have migraine symptoms without the headache.)  My husband's side has severe migraines (several of his siblings and his father have had them), and three of my other children have them maybe once every other month.  My husband used to have them every day, like the daughter mentioned. 

 

We also have epilepsy on both sides of the family. 

 

It is why my daughter never went to college and became a musician instead.  :)

 

If you do find that it's migraines, the book that most helped my husband is Heal Your Headache, and the diet recommended.  I was even in touch with author personally as he tried to help us with our daughter.

 

I'm glad she is getting the MRI, for peace of mind.  I'm sure it was very scary to go through that!!

[clemota]

:grouphug: :grouphug: :grouphug: :grouphug:

[Starr]

:grouphug:  :grouphug:  :grouphug:  I'm glad they are checking all angles. I wouldn't get set in the migraine mode until you are sure it's nothing else. Her symptoms are not common for migraines. I'm sorry. :(

[Guest]

With the faintness and aura I'd say that sounds about right! They're not terribly common but still scary! I hope your daughter will have some relief with the abatement of the stress of moving. Modeling her well nourished and well rested in the meantime will help.

 

:grouphug:

[Cottonwood]

:grouphug:  :grouphug:  :grouphug:  I'm glad they are checking all angles. I wouldn't get set in the migraine mode until you are sure it's nothing else. Her symptoms are not common for migraines. I'm sorry. :(

 

 

Well I'm not exactly, for this Friday episode.  I'm waiting on the MRI results before feeling relieved completely, of course.    But she does have a year long migraine diagnosis and the neurologist talked about stranger symptoms' some of these she has had.  And, I have some medical reports (not the above) pulled up that are like a check list for what she went through Friday and they call it 'complex', 'complicated' and silent migraines, so it's actually agreeing with quite a bit of our experience.   

 

And, no, no family history on my side, anyway.  DH hasn't mentioned any family history but I"ll ask when he gets home.  He is not in contact with his family all that much but maybe I can get him to cal them up and ask some questions.  Just for an idea of who or if anyone has had the same issues.

[Cottonwood]

anyone else have insight tonight?

[mom2samlibby]

Did they do blood work?  My migraines have diminished since I've started taking B12, iron, folate, and magnesium.  I've never had any quite like your daughter, but I have had some weird ones that did not present like a normal migraine.  Mine were triggered by the weather.

 

I'd ask for blood work to be done and get the results in your hand, so you can see if they are ok or not.

 

I hope you figure this out quickly.  Those sound very scary!  Hugs to you both!

 

 

[MBM]

Has your daughter been tested for Hughes Syndrome? Migraines that start in the teens can be a sign of it. Cold hands are another but even if she doesn't have cold hands, you might want to get her tested just to rule it out.

 

I'm sorry you're all going through this and I hope you find something helpful soon.

[goldberry]

I've had complicated migraines since childhood, but with fairly typical symptoms (aura, numbness, headache).  I did have one occasion when I couldn't speak and had the confusion.  Recently as an adult, I went through about a month where I had the aura and some disorientation but no headache.  Those kept happening every couple of days.  That was unusual, as a teenager I had them about once a month, but as an adult, they decreased to about once a year.  I went to the doctor, who did some preliminary neurological tests (normal) and said if it kept up then he would send me for a workup.  I started some things I used to do when migraines were more frequent, and it eventually just stopped.  

 

The only upshot here is, migraines are weird.  But your daughter's episode at the doctor sounds...strange to me.  I would be pushing for more testing.  

 

:grouphug:

[goldberry]

 

When we went to the Dr today, during some lab work, she passed out in a seizure like way while I was right beside her.  

and then she went sideways with tongue hanging out and eyes back in her head.  

 

The other symptoms you mentioned sound like migraine, but not this part.  Also, the "feeling faint" seems normal, but I've never known anyone who actually passed out with migraines.

[Ellesmere]

Do migraines run in your family? My daughter has had all of those symptoms at one time or another with her chronic migraines, which she has daily to some degree. Her most common symptoms are the weird vision things (which change -- from colored to distinct lines to polka dots to a dull gray film to one big check mark!), tension in her neck and upper back, tingly hands, mild confusion, severe vertigo, clumsiness, and of course the headache itself. (Though one of my other kids used to have migraine symptoms without the headache.) My husband's side has severe migraines (several of his siblings and his father have had them), and three of my other children have them maybe once every other month. My husband used to have them every day, like the daughter mentioned.

 

We also have epilepsy on both sides of the family.

 

It is why my daughter never went to college and became a musician instead. :)

 

If you do find that it's migraines, the book that most helped my husband is Heal Your Headache, and the diet recommended. I was even in touch with author personally as he tried to help us with our daughter.

 

I'm glad she is getting the MRI, for peace of mind. I'm sure it was very scary to go through that!!

My doctor asked me to look into that diet. That's great the author helped your family!

It was a no-go for us based on my other issues, but I was helped by some of the suggestions. I found the information in the book about medication and on overall increasing the tolerance and threshold for triggers to be most interesting.

 

For anyone interested, here is a link to a sample of the book and the NPR article about it and the author.

 

My doctor also suggested magnesium and vitamin B2 (riboflavin). I'm just doing the latter and so far, so good.

 

Good luck, OP. Sounds so difficult.

[Cottonwood]

Did they do blood work?  My migraines have diminished since I've started taking B12, iron, folate, and magnesium.  I've never had any quite like your daughter, but I have had some weird ones that did not present like a normal migraine.  Mine were triggered by the weather.

 

I'd ask for blood work to be done and get the results in your hand, so you can see if they are ok or not.

 

I hope you figure this out quickly.  Those sound very scary!  Hugs to you both!

 

yes, the Dr said they are doing a full panel of testing on her.  

 

Has your daughter been tested for Hughes Syndrome? Migraines that start in the teens can be a sign of it. Cold hands are another but even if she doesn't have cold hands, you might want to get her tested just to rule it out.

 

I'm sorry you're all going through this and I hope you find something helpful soon.

 

 

I'm not sure if that's one of the tests he ordered, but I'll look it up and maybe talk to him about it.

 

The other symptoms you mentioned sound like migraine, but not this part.  Also, the "feeling faint" seems normal, but I've never known anyone who actually passed out with migraines.

 

Hmm..  Last year, when i mentioned passing out as something weird that was going on, THAT'S when the dr. suggestion migraines.  Last year they did a ton of bloodwork and other labs as well and everything came back clear.  I have also had several friends and family tell me that they had fainting episodes as teens that were never explained, and finally grew out of it.  I don't know quite what to think of it.  

 

The doctor in the lab said the reason she probably fainted after the blood was taken was because they took more blood than they normally do for kids.  I also couldn't get her to eat much bfst and this was at 7:30 am.  I could only get her to take a few sips of water.  So with the amt of blood drawn and no glucose, they said her blood pressure dropped too quickly.  i tend to agree about this one. She was out only a few seconds.  All other fainting spells have happened while experiencing migraine-type symptoms.  Only about once a year..maybe a touch more.  

 

 

My doctor asked me to look into that diet. That's great the author helped your family!

It was a no-go for us based on my other issues, but I was helped by some of the suggestions. I found the information in the book about medication and on overall increasing the tolerance and threshold for triggers to be most interesting. 

 

For anyone interested, here is a link to a sample of the book and the NPR article about it and the author.

 

My doctor also suggested magnesium and vitamin B2 (riboflavin). I'm just doing that latter and so far, so good.

 

Good luck, OP. Sounds so difficult.

 

Thanks for you guys mentioning this book.  I'll look into it.

[Cottonwood]

bump for update

[Tree Frog]

Some of the symptoms sound like seizures. Has she had an EEG?

[jewellsmommy]

I had what the dr called a migraine variant. I had a brief sharp/stab like pain then the left side of my head was tingly and numbness spread down my face. The numbness lasted almost 24 hrs. At another point during the event, i bent over and saw starbursts like fireworks. At first the hospital looked for an aneurism, but that was negative so they settled on migraine variant.

 

Before this, I was not having migraines. After this event I had several, what the dr called painless migraines, where my vision distorted (very blurry) and I smelled a campfire/burning wood type of smell but it was an olfactory hallucination. I do get quite dizzy, but I have a vestibular imbalance so it doesn't take much to get me off balance.

 

These events are disturbing to experience, and they freaked my dh out. I hope your dd can get some solid answers and never has to experience another one!

[Catwoman]

Thank you for the update - I am so happy to hear that the results ruled out the big and scary stuff! :hurray:

 

I get migraines from MSG, but I get them within hours of eating the MSG. As an example, if I eat something with MSG at dinner, I always get the migraine before bedtime. I don't think I have ever eaten MSG and not gotten a migraine until the next day, although maybe I have, and I just never put two and two together. I don't think so, though.

 

The chiropractor thing sounds very interesting, and although I'm certainly no expert, I think your theory makes a lot of sense.

[Chalex]

I get these kind of migraines.

 

Many times they simply come on "post stress".  I remember once having a hard day at work and coming home to walk the dogs.  I felt happy to finally be able to relax.  Then suddenly the aura starts and the numb tongue.  I had to pass people and hope they didn't talk to me because of the slurred speech.

 

Also, it happened to me when we were buying our first house and I had to deal with the bank.  After that phone call, I was happy and then Bam!

 

I've noticed over time the shape of my aura's have changed, which is interesting to me.

 

They used to show commercials about the symptoms of having a stroke...I could check off most of them to having a migraine.

 

My aura and numbness usually last about an half hour before I get the headache.  After the headache passes, I usually have a day or two where it's tough to pick stuff up off the floor--my head feels so heavy and spacey.

 

My migraines started when I was around 20.  I had them a few times a year, they've slowed down now to maybe once a year.  Sometimes it's hormones that trigger them or bright light.

 

I've never found a great medication to help.  I was prescribed something with caffiene but it wasn't amazing.

 

Sorry your daughter has to deal with this...

[Tanaqui]

I'm glad everything even worse has been ruled out :)

 

Not everybody has the same triggers for a migraine, and many people don't seem to have a trigger at all, or it's a trigger that has nothing to do with their behavior, like PMS or an incoming storm. Sometimes migraines just... happen.

[The Governess]

Migraines run in my family. My dad used to get them a lot when he was younger; now he gets the aura only and then just feels a little spacey for the rest of the day. I had several in my teens that I think were hormone related because they appeared shortly after I started my cycle and went away a couple years later. I had another one a few years ago that was triggered by light shining into the corner of my eye, but it was my first in 20 years. My dd got her first, complete with full aura, at 10 years old. I have a friend whose arms go numb with a migraine. They can be very scary, especially when you don't know what is happening. I hope your dd's are short-lived or at least improve/become more infrequent as she gets older like mine did.

[momto10blessings]

Did the neurologist rule out TIA?

I was going to copy and paste symptoms, but I'm not sure if that's against board rules?

The numbness/weakness on one side combined with auras/visual disturbances reminded me of a TIA.

[Tess in the Burbs]

I get ocular migraines and lose the center of my sight and get exhaustion that is debilitating. I can get several in a month or go years without one. I have no meds. I usually feel it coming on now(weird vision stuff beforehand that I recognize as early symptoms) and go to bed. 24 hours later I can see but am still tired. 48 hours usually gone. I have Excedrin migraine on hand to help with pain.

[Cottonwood]

Did the neurologist rule out TIA?

I was going to copy and paste symptoms, but I'm not sure if that's against board rules?

The numbness/weakness on one side combined with auras/visual disturbances reminded me of a TIA.

 

 

What is TIA, again?  I'll ask at her followup appt on Wed.

[itsheresomewhere]

Make sure you get an EEG.  I am surprised that it wasn't already ordered. 

[Meriwether]

I've been having paresthesia for several months now. After extensive testing, the neurologist is leaning toward a migraine diagnosis.

[Cottonwood]

Some of the symptoms sound like seizures. Has she had an EEG?

 

She had one last year when they were doing all the tests, right before the official diagnosis.  She had an EKG, an EEG and another similar test.  All showed up fine at that time.  I keep reading how closely seizure/stroke/migraine symptoms mimic each other.  For now, all but migraine has been ruled out.

 

I know you are addressing the diet which I think is smart. Could she keep a food journal? I know sometimes MSG is hidden in items with not so obvious ingredients (e.g. flavoring). I am not saying it is MSG-related, though. As Tanaqui said PMS and weather can be the trigger. I know for a while my migraines happened consistently right before or on the first day of my period. But I haven't had a period in a year due to pregnancy/nursing and I've had a couple, anyway. Just hormones in general and/or diet/fatigue/stress all seem to play a role IMO.

 

She can....but the last episode (before this one) was last summer (2014).  It's nearly impossible to track something once a year, I think.  We have always tried to avoid MSG as a rule (other neurotoxins as well) so this will continue but with more intensity now.  And, as of last year, she hadn't had a period but she's had 7 or 8 now with no migraine episode.  This time, she was smack in the middle of a cycle..as in..she just finished her period 2 wks before the episode, so.....?  Stress is HUGE HUGE HUGE right now but I can't remove that because we are moving and we are all struggling.  Just trying to help her along with it. :( 

 

Migraines run in my family. My dad used to get them a lot when he was younger; now he gets the aura only and then just feels a little spacey for the rest of the day. I had several in my teens that I think were hormone related because they appeared shortly after I started my cycle and went away a couple years later. I had another one a few years ago that was triggered by light shining into the corner of my eye, but it was my first in 20 years. My dd got her first, complete with full aura, at 10 years old. I have a friend whose arms go numb with a migraine. They can be very scary, especially when you don't know what is happening. I hope your dd's are short-lived or at least improve/become more infrequent as she gets older like mine did.

 

I keep trying to get info on who in our family has migraines.  Her great-uncle has them sporadically and my MIL has had on a few in her lifetime.  I guess that's enough to verify someone in the family has them.  Theirs occur with the headaches.