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Daily aura symptoms... but no headache?!
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Daily aura symptoms... but no headache?!

I would love to get some opinions on whether what I'm experiencing sounds like migraines! I'm a 29-year-old mother of 3 who is is in good health other than these bizarre symptoms. I don't take any medications other than a multivitamin and an Omega 3 supplement. I don't smoke. I drink socially (3 drinks a week approx.) and I drink about 2 cups of coffee or tea a day.

I had my first classic migraine in 2006 when my first child was a baby. There was an aura (metallic taste in mouth, visual disturbances), a severe headache, then extreme fatigue. It resolved within about 4 hours. Around the time I became pregnant with my third child (fall 2009) I started getting a patch of tingling on my back that would come and go, but wasn't associated with headaches. Then I started to get bouts of vertigo, sometimes alone and sometimes coupled with nausea. In the spring of 2010 I had a sudden onset of aura-type symptoms during a major pressure change (the weather went from bright and sunny to dark and stormy in a couple seconds - very dramatic!) I lost familiar words, couldn't think clearly, couldn't speak clearly, then got tingling in one arm and side of the face, and felt very weak and tired. It resolved fully in about 3-4 hours and I didn't get a headache. My doctor was worried about a TIA so she did an MRI, bloodwork, and an ECG which were all normal so she called it a silent migraine. I was 7 months pregnant at the time.

In the fall of 2010 when my baby was about 2 months old the bouts of vertigo and nausea returned along with occasional tingling in my face and the same patch on my back. They mostly occurred separately rather than all together. Then I got a week-long headache on the right side with facial tingling and sinus pressure. I was prescribed Sumatriptan which I took once and it seemed to resolve the problem (though not immediately, which I think is unusual - it was the next day). Up to this point I can accept that all my symptoms were due to migraine. But then it gets weird!

A couple weeks after this I got very stiff, sore joints in my hands and burning pain in the backs of my hands. All of a sudden one morning I had an "episode" where my right thumb went numb and tingling, followed by that hand and then the whole arm. Finally my legs (both) went tingly and I got very cold and shaky, kept needing to pee, and felt nauseous. This lasted about 4 hours and there was no headache. I took a Sumatriptan, but it did not help. My husband took me to the ER because it was so unusual. They couldn't help but thought it was not a migraine and might be Multiple Sclerosis.

I had to wait 2 months to see a neurologist, but kept experiencing symptoms daily. None are constant; they all come and go for a few minutes or hours at a time then resolve. I've had muscle twitches (face, hands, legs), facial pain (around cheekbone) and tingling, cognitive problems (concentration, etc.), fatigue, irritability and impatience, tingling in my arm, hand, legs, and back, diarrhea, nausea, blurriness in one eye, vertigo, sinus pressure and pain, one-sided headache, leg weakness, and all sorts of sensory issues like buzzing, burning, vibrating, or "wet" sensations. I also smell cigarette smoke when there is none there (and no one in my family smokes). The symptoms are really bothersome and are affecting my ability to take care of my children.

My doctor kept thinking it was MS, but when I saw the neuro he immediately focused on migraines. He thought some form of chronic migraine or perhaps a seizure disorder. He's run blood tests, did an EEG, and an MRI of brain and spine. So far I only know that the EEG and MRI are normal and so is the basic bloodwork. However I don't know about some of the other blood tests like the ones for autoimmune disorders (lupus, rheumatoid arthritis). In his physical exam, the neuro said that I have polyneuropathy in my feet/legs. I couldn't sense vibrations appropriately or feel changes in temperature. You can actually see that my feet change colour sometimes (red, purple, or black patches).

Soooo... I just really want to know if anyone else has experienced long-standing aura symptoms like this. I know about status migrainosus, but I only ever read about it being experienced as severe headache pain lasting more than 72 hours. Can it be aura lasting for months?! I would love any information and ideas.

Zoe
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I've had these things for 14 yrs now, & this is the first time i've ever gotten involved w/ a forum!

my story is similar, but definitely different too. there must be a genetic component, b/c my mom (i'm 35) has been able to guide me through it since she had the same thing. she hasn't had one (i think) since menopause, so we believe there's a hormone component.

lots of things to say that seem like might help others, so here goes!

i had my 1st one after being on the birth control pill for just under a year. sounds just like many stories: going numb on 1 side, but i completely could not communicate, talk, write, my vision went weird, hearing in & out-i woke up in the hospital cuz i blacked out completely. i literally thought i had gone crazy. the ER doc told me (i was only 21 & very naive!) it was a TIA brought on by the BC pill & to never go on it again, that some women couldn't handle the hormones.
we moved from CO (high altitude & 300 days of sun) to Chicago (not much sun & sea level), & for 8-9 yrs, i didn't have a single one. as soon as we moved back to CO, I had maybe 3 within a couple months, & a few more within our 3 yrs there.

mine were so bad a couple put me in the ER b/c i couldn't function & people around me didn't know what to do!
i also had never had headaches, but boy did i get a rude awakening!
mine slowly (maybe several minutes) went from tingly numbing face, hands, arms (usually 1 side, sometimes both) to worse & worse confusion, always losing my ability to communicate, read, write-anything. my husband has gotten used to it, keeping my kids away b/c i get really confused easily, then i cry b/c it's scary.
anyway, if i took a Maxalt right away, it would keep the headache at bay, then i'd need a solid 12 hrs to sleep, & i'd be pretty normal the next day-maybe just a bit tired.

they varied in severity. then we moved 2008 to China (sea level, completely different climate). i didn't have one the 1st year; i had a mild one the 2nd year, & i just had maybe my worst ever 2 wks ago. i had been convinced it was the altitude, sun, maybe dehydration. but not so apparently!
here's a theory: 3 mos. ago I had a D+C for a year's worth of irregular bleeding. it could very well be the whole hormone theory wreaking havoc on my body. who knows.
but this aura was so bad that it made me more depressed than ever (thinking thoughts like "what if this is related to alzheimers & dementia like my grama? what if i lose my mental acuity more & more from this?" i've heard we suffer slight brain damage from these!). in the last couple years i have just felt like my mind is slipping, i'm not as quick as i used to be-not getting younger, right:)
importantly, the Maxalt simply didn't work this time. i had maybe the worst headache EVER-i was writhing in pain. i have the utmost sympathy now for sufferers. i was also confused from the moment i woke 7am for maybe 8-10hrs, but still slow for days after. yes, i need help. i don't have the medical care till summer, but will for sure get it!
i am now working part time, so it's not necessarily stress, although i do have 1.5 special needs kids (1 pretty needy, the other not as much)
i seem to have more regular tingly hands & face (left side i think) & just plain confusion or fuzziness than ever before.
i just have to acknowledge that at least i'm at peace about it b/c of strong faith. God will take care of me & lead me to the right doctors & medication & won't give me more than i can handle. look to Him, the Great Physician...
-fellow sufferer
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Zoe, did your doctors rule out Lyme Disease?  That was the first thing that crossed my mind when I read your symptoms.  You could have migraines as well as Lyme Disease.  However, Lyme can cause mental issues, tingling, vertigo, and headaches.  I hope you feel better.  

Hestia
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Avatar_m_tn
I have a similar story.  I've been a long-time sufferer of migraine with aura, and for a long time the aura was fairly consistent - visual disturbances and nausea mostly, and a headache.  Last year, I moved out to a remote town with a different climate, with my partner after finishing uni.  It was a stressful time because I didn't know anyone, didn't have an income (except through my partner), and was applying for a lot of graduate jobs without knowing whether I'd ever actually find one. Well, soon after we moved there I had a hormonal imbalance, with irregular bleeding, and had my period twice in two weeks, but it returned to normal pretty quickly.   Then, a few weeks later I started getting numbness in my fingertips.  It was very very strange because it started off with one finger, and then started moving to more and more of them, over a period of WEEKS.  I went to the doctor when my second fingertip went numb, about a week after the first, who was worried about heavy metal poisoning (it was a lead-mining town, and I'm an organometallic chemist).  She did a lot of bloodwork, and it all came back normal.
At this stage, I was also developing a dull, but persistent throbbing headache on one side at the base of my skull.  I also had some visual disturbances, mental 'cloudiness', and felt off-balance.  
Someone suggested that I go and have my neck checked out, so I went to teh chiropractor, and he did a 'readjustment' on my upper vertebrae (it just felt like slight vibrations). During the consultation he noticed that my pupils were two different sizes, something that the optometrist confirmed later (about 20% different).  About two hours after the chiropractic treatment, I was walking home and suddenly my entire right side went red and hot, while the left side was normal, and there was an explosion of pressure in my head, which was painful, but felt good, like a release.  When I looked in the mirror a few minutes after this, there was a line down the middle of my face dividing the hot red side from the white, cooler side of me.  I laid down, and started getting really unpleasant and strong hot and cold sensations pulsing down from my head, to both arms and legs.  The sensation was so strong that I coundn't sleep that night, and ended up getting a flight to a city first thing in the morning, so I could go and have an MRI.  By this time, the headache was back again.
The MRI came back normal. The neurologist told me he thought it was a blood vessel chronically spasming in my brain, and diagnosed me with basilar migraine.  I had been feeling increasingly dizzy and mentally confused over the past few weeks after the initial numbness.  With my eyes closed, I kept falling over to the left, and by this time, my vision was shattered and spintered, and my blood pressure was up and down.  The weird thing though, is that the headache stayed dull, and I was never in too much pain.
The neurologist gave me anticonvulsants and beta-blockers.
I still wasn't convinced that migraine was the whole story though.  As someone with a long history of migraine, it just didn't 'feel' like one.  
I started seeing a physiotherapist, for regular massage, and started doing exercises to build up the muscles in my neck and back.  I truly believe now that neck problems sparked off my migraines.  Hormones, and to a lesser extent, anxiety, were also a factor.  I have made an effort to look after my neck and back since then, and I'm feeling very healthy now, and working in a very demanding job too.
The only difference now, is that just before I get a normal (short) migraine headache, there's a tingling in my thumb.  I've never had any sensory disturbances before, apart from visual, as part of the aura.
My pupils have also stayed slightly different sizes, although it is very very hard to tell now, as they are now nearly the same.
Now that I look back through photos, I have discovered that my pupil size-difference occurred at least a week before the finger-numbness.  It's surprising that no-one, including me, noticed it.  It jumps out at me now when I look at those pictures.  In my graduation photo, taken a week before the first finger-numbness, I have wildly different pupil sizes.  I wonder whether the photographer was just being polite by not mentioning it?  It's certainly an odd souvenir to have of my uni days..

i just wanted to put this story out there, so that you would know that these symptoms really CAN be benign.  I was terrified last year, particularly when the hot and cold feelings started.  There were a couple of times there where I really believed that I might not actually get better from this.  It's very hard for other people to understand what you're going though as well.  Even medical professionals.  They would constantly simplify it down, and call it 'just a headache'. All I can say is, persist with it, and trust your gut feelings.
Migraine is a very poorly understood condition. It actually has a lot of similarities to epilepsy (hence, the prescription for anticonvulsants).  So NEVER underestimate what a migraine can do to you!  The good news, is that they don't cause permanent damage.  
There's a book called 'Migraine' by Oliver Sachs that I would recommend reading, in order to learn more about this interesting condition we have.

I alos reccomend going to see a physiotherapist ASAP.  For me, my neck problems were the trigger that set off the kaleidoscope of migraine symptoms.  
I wish you all the best in getting treatment.

S.
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