New Member - Need some advice

I have had migraine since I was 14 - typical migraine with aura, numbness, tingling, one-sided headache, nausea, etc. As I got older my migraine symptoms have changed - I am now 46 (female). I was diagnosed with complicated migraine in 2003 - neurological symptoms but no headache. It's been fairly manageable up until now - never on meds. About 3 months ago I had a horrible bout of vertigo - right before my period. It lasted a day or so then went away. The following two months after that the vertigo was increasing, still before my period but also other days of the month. The entire month of November I had vertigo every day including ringing in my ears but no hearing loss. I also had migraine aura every day as well - numbness, tingling, smelling weird odors, etc. but no headache. I went to my doctor who said probably migraine and referred me to a neurologist on November 30 who diagnosed atypical migraine, gave me Elavil to try (20 mg before bed)as a preventative and some Maxeran as an abortive. I am also booked for an MRI on Jan 8 (soonest I could get in). It is now coming to the end of December, I still have these daily symptoms, the Elavil is helping somewhat but not completely - all trial and error I am told until I find the right med and dose. This is affecting my life - I have to work modified hours now as the off balance and dizzy feeling is still present as well as the ear ringing. I did have a "normal" migraine a couple of days ago that included a headache - manageable with Advil. It's like I had 30 days of aura with a normal migraine headache to follow, two days of feeling great then wham, it's back again. I also have a tightness in my throat, like I can't swallow sometimes. I do get acid reflux once in awhile but never had that type of symptom.

I guess my question is has anyone had a long bout of aura like this and is still continuing? I am really scared that this is something more and dread the MRI although I know it's a good thing to rule stuff out. I had an MRI done 2 years ago which was normal. Can a tumor or something like that grow in those two years to cause these symptoms? I am getting so frustrated with everything and I'm scared to death its something more serious than atypical migraine. The ear ringing is horrible and the phantom odor I smell, sweet smell like perfume, I think is actually giving me a headache!

Thank you!

I'm sorry you have been having these symptoms for so long. I hope the MRI and the neuro can shed some light on everything. Until then, I hope you can be put at ease (easier said than done, I know) and let the test results determine your (or the doctor's) next course of action.

I can certainly relate to the vertigo. A number of years ago I had vestibular neuronitis and it was totally debilitating. I had severe bouts of it over a year which would wipe me out for days. Sometimes I would get relief for a couple of weeks or so then suffer another attack. It was awful but thankfully it eventually went away. I used some homeopathic stuff called vertigoheel which helped. Unfortunately I do seem to get vertigo with a bad migraine but not everytime.

I've never had such a long bout of aura though. Good luck with the MRI.

Thank you for your replies. I've never had this long of an aura either and it's really freaking me out. I know if I go into the ER they will just say "migraine" to me again and send me home. I really won't rest until the MRI is done and I know what's going on either way - good or bad. Sometimes I think getting the headache is a relief then I know for sure what it is.

My daughter has vestibular migraines and vertigo is her major aura symptom. As a child she was always prone to motion sickness and I believe that was a precursor to her migraines. She also has what the neuro-opthamologist called a "springing pupil" which just means that one of her pupils dilates while the other does not - just a bit freaky to look her in the eye with that happens. She takes 50mg of elavil which she thinks helps keep the vertigo at a minimum but she still has to be careful about motion. She has also recently discovered that certain foods trigger her migraines.

Aura symptoms can be exhausting and last a long time - the best thing my daughter and I can do is minimize our triggers and be patient with our bodies. She has called me sometimes when the vertigo is so bad she can't get off the floor and she is cursing her body - this medical condition is so frustrating and so capricious - striking at the most inopportune times. It is so important that we have a support system and this forum can help you with some of that support. Welcome.

Thank you for your response. Has she had lengthy aura like I'm experiencing? How old is your daughter and what foods trigger her migraine? I still can't seem to find any food triggers and I've been having migraine since I was 14! The only one I know for sure is sleep pattern changes.

I'm sorry you're having such an extended period of aura. I generally don't get auras with my migraines, so I can't really offer advice. Just wanted to let you know that we're here to support you. I hope your doctor is able to get to the bottom of things and get it controlled for you. As far as the vertigo before your period, I've had that for years. It lasts a day, and is gone. I always have a severe hormonal migraine before my periods. They are pretty much untreatable and last from 18 hours to 5 days. Such fun being a woman sometimes. lol

I don't have aura either but had a thought as I was reading. I know you are a bit young but could you be starting the menopause process? I know hormones can play a part and can cause things to go a bit haywire. Hoping your MRI shows something though.

Hi - yes, perimenopause was a consideration as well. They did check my hormone levels in my blood tests but they all came back normal. My doctor said they definitely could fluctuate during my period causing the bad dizziness, etc. at that time. Doesnt explain the rest of the month though. Since starting the 20 mg dose of Elavil 2 weeks ago, I've only had one small bout of dizzy in the grocery store which lasted a few seconds, nothing since then which is a good sign. The tinnitus and phantom smells are still there constantly though. My period is due any day now which frightens the heck out of me as I seem to have the GIANT dizzy bout with that every month - hoping the Elavil controls it this time.

I've been trying to take the Elavil around 8 pm every night but I get so sleeping about 2 hours later and then I'm out like a light and could sleep 12 hours! That kind of screws me up be because too long of sleep causes my migraines!! A catch-22 situation!

I am SO scared that the MRI will show something more serious but I keep reminding myself that its important to deal with whatever it is sooner than later.

I was so scared when I got the first lot of dizziness with my migraines a few months ago. Before that I'd never had the dizziness with a migraine and it went on for a couple of weeks. Initially didn't associate it with the migraines - I actually thought I had the vestibular neuritis back. I saw my doctor and she ran a whole stack of blood tests and they all came back fine. I've since had the dizziness and now know that its just another migraine symptom.

I almost wanted them to find something when I had my MRIs. I know that sounds terrible but you get that desperation feeling and I just wished there was a reason or trigger that I could find. If something turned up in it then I could say ok, its because of that. Something to blame I think and perhaps a way of accepting it. Nothing turned up and I am very grateful for that but there's still no answers and I struggle so much with that.

I totally understand that - I feel the same way.

I just got my period today and so far I've only had one tiny bout of dizziness which was on Sunday and it was very brief. Fingers crossed the Elavil is doing its job now and my MRI is okay in two weeks.

Thank you so much everyone for all your posts and comments. Helps to have people that are going through the same thing.