Migraine

I frequently wake up with migraines, but those are usually mild enough to go away on their own after I am up for a while. I also get intense basilar migraines during ovulation & PMS/menstration & hemiplegic migraines when my asthma acts up.

However, almost daily (although sometimes I have a 3-6 good days a month, usually right after ovulation & before PMS), I have day-long aura symptoms... tinnitus throughout the day (and night), paresthesias (goes in cycles from left to right & then starts up again), dysthesias, and general skin sensitivity & irritability. When these symptoms are worse (to the point that they are disruptive), I have insomnia & agitation & will be guaranteed to have a broken night of sleep, mostly consisting of light sleep & visual & auditory hallucinations.

I know when I smell something burning or taste something metal or my nose vibrates, that I'm in for a bad migraine afterwards, but with my more frequent symptoms, I don't always see a migraine following it, although I have a more likelyhood to wake up frequently during the night due to limb stiffness/paralysis, pain, head pain & wake up feeling pretty sore & achy.

Does anyone else experience aura symptoms, but don't seem to follow with the typical stages of migraines?
How do you deal with them? I find that it's very hard to ignore them & go about my day, even though my doctors encourage me just to ignore them. Do you have any tips in ignoring dysthesias & parasthesias (I always have background noise for tinnitus, which somewhat helps, but not totally)?

I'm not on any medications (besides Midrin) because I reacted very badly to several meds previously (Inderal, Tofrinal, Topamax, Elival) and currently going through evaluations for the past year (and meds can skew the results).

I don't typically have auras with my migraines. When I do however, I experience almost the same types that you do; burning smell, hearing things like a television is left on, mixing up words etc. A recent development is a buzzing sound in my ear. But, they don't happen very often. Usually just the pain.

The only time I had an aura (that I can think of right now) which didn't result in a migraine was a few months ago when I had a black spot move from the center of my right eye and slowly work it's way down to the corner of my eye. I laid on my back with my feet up and then about ten minutes later, it passed and I never did get a migraine.

I have different aura symptoms than you (a bit unpredictable, varying greatly with each episode), but yes, absolutely, I have aura symptoms of one degree or another, every single day of my life, with or without the intense migraine pain. The only way I get through it, is because I don't have a choice, I just have to keep living, & struggle through it day to day (usually pretending nothing's happening).

Neuro seems to think it's not that unusual, and all my extended family members who also suffer from migraine get the same thing.
Wish there was a better answer for us! Sorry

I think all you can do is deal with it, and make sure the doctor you see for your migraine knows that you're having this problem.

I go through a lot of persistent aura. It went away for a few months after the PFO procedure and after they upped the dose of Toprol but it came back with a vengence a couple of months ago, when I was having constant, severe migraine on a 16-day period.

I tend to go through repeated aura now before going straight into a migraine. Last night I hallucinated smells over and over, along with the sparkles in my vision that are generally there no matter what anyway. I'll also see oscillating shadows with the sparkles, and I get a lot of random tingling/numbness in my left side. Tinnitus I only notice when there is an audible "drop" in my hearing or when it is quiet, but I do get it more frequently now.

So, no matter what I do I am in a migrainous state and it won't stop. It can be very irritating to wake up in the morning to cloudy vision and snow everywhere, which generally clears to those sparkles after a while.

Just make sure your doctors are alerted if anything changes. If you can't take medications there's not a whole lot you can do other than try to adjust to it and get used to it. It can be trying, and hard to get used to, but I just try to get on with my day as normally as possible even with all the noise in all my senses.

I totally understand what you are talking about! I frequently will have auras, dizzy, and funny/senstive smells. I allso will sometimes have the light/sound sensitivities, but never get the head pain too bad. all this will go on for weeks and even months, to a varying degree from annoying to flat out impossible to ignore. I will also get the tingling or numb on the left side sometimes.

All this makes it really hard to tell what phase Im in with a migraine, or if Im even going to get one at all!

I just deal with it, and if theres days where its way too bad, I will take my midrin as if im having a migraine, but that doesnt always help, sometiems it just makes me groggy on top of everything else! Other times it does help a bit, and at least lets me sleep good.

Its very frustrating! Wish I could give you more help on how to deal with it, but I too have no clue what to do!


Tawsha

Well, this is the issue. I have sensory processing issues (since I was a child), but it's gotten worse in the past couple of years. I have a hard time dealing with tags on my clothes and certain textures. I don't wear jeans or belts for this reason (and wear scarves or hats on my head). When I work with kids, I have to be careful they don't throw balls or objects at me, because I will react extremely (I've screamed hysterically at work several times because of this & I know that my coworkers probably think I'm a bit nuts -they did at my last job).

With tinnitus, it's helped a little by listening to music or background noise (although too much noise is a problem)- it's more of an issue when I attempt to sleep & it's bad, but there's nothing I can do about parasthesias & dysthesias (no one usually notices unless I get a bad one or a surprising one & end up yelling owe!!). But it's very hard to "ignore". Maybe it's easier for people who are physically stronger & less sensitive??? How do other learn to "ignore"? I'm not sure if I quite get it.

I tried to explain how I feel on a daily basis to my mother the other day. If a normal person gets burned frequently or gets stabbed by a thumb tack or gets a an electric shock, I imagine that person would just brush the annoyance off & go their merry way. But imagine your body is covered with fine sand: sometimes you are ok & other times everything itches like crazy. Now you get shocked or burned & a thumbtack stabs you. This not only hurts or feels uncomfortable, but sets everything off in your body. You end up feeling like your loosing it. It constantly wears you down, but when it's bad, you can't even sleep (and then get muscle cramps). The only I can do is wrap myself tightly in soft blankets, but it doesn't help much. A lot of times it's really bad when I have allergies & frequent asthma attacks (and I don't always recognise an asthma attack) which transform into hemiplegic migraines (head pain doesn't last long, it's more of the muscle weakness lasts a while).

I know I shouldn't complain... I only get moderate to severe migraine pain probably 3 to 6 times a month (for one to 4 days at a time) & the rest of the time my migraines are pretty mild & go away on their own. I can somehow deal with my visual disturbances & hallucinations & if anything, I find them interesting (once I recognise what they are). Weird smells & tastes are annoying, but they don't occur on a daily basis & I know a bad migraine is brewing around the corner when I get them. Loud sounds (popping, phone ringing, etc) usually mean I am falling asleep & need to desparately nap (if it's light sleep they will continue along with the visual stuff & be restless, but if I am able to sleep deeply, it goes away).

It's basically that I am having a hard time with the parasthesias & dysthesias on a daily basis & don't have any ideas to make the situation better.

I had great difficulty getting ahold of my seizure specialist & finally my sleep clinic got ahold of her, but don't have an appointment till the end of June. I can't seem to get a live person on the phone through my migraine specialist's office (and I ran out of Midrin). I see my sleep specialist & GP on a somewhat regular basis, but this is not their specialty & while they try to help, they don't have any ideas on how to deal with it.

My boyfriend thinks exercise will eliminate my paresthesias & tinnitus & sleepiness. I'm not sure how that's related. It's hard to even be motivated to take walk nowadays.

Alexandra,

I too can't stand certain fabrics or tags on clothing. I cut all of mine off. I also can't stand socks when I am wearing shoes. If it itches or is too rough, forget it, it's coming off. I tried an undergarment with a nice sweater I bought this winter and couldn't wear it that way either.

Do you have an autism spectrum disorder, like Asperger's? This could contribute to your parasthesias and set off your sensitivities even further than most people. As far as sound goes, I too like a quiet atmosphere but I have a noisy husband so I don't get that when he is home. And trust me, it drives me to the brink sometimes, and I have to be careful not to explode. If there were one thing he did to aggravate me, that would likely be it. Otherwise, he's fine, lol.

I also have mild synesthesia, so that makes things a little more interesting too. These aren't things I talk about a lot, but that I've coexisted with since I was born as well, so for me, I'm used to them, and I don't let them get to me unless I am away from humanity and can meltdown in private, because I will do that after too much stimulation.

The migraine brain/body is more hypersensitive anyway, and to someone with Asperger or a related disorder, it can likely make things worse on them.

My migraine specialist discussed persistent aura with me in depth the first time I told him what I was experiencing. According to him, the switch has tripped and the neurons aren't returning to baseline. Essentially, they are overexcited and need help to return to normal. That is, if you are having PMA, which is something you should talk to your DR. about.

When you have to work and get your day done and over with, it's very difficult not to feel overwhelmed and overstimulated when you come home. I generally take about half an hour myself after coming home from work to just let myself deflate and let myself know that I am home and in a comfortable place. If it's possible for you to do so, I suggest that you allow yourself some time to try and relax once you get home. This isn't even a maybe for me; it's essential. I can't handle people coming at me because I work in a noisy, loud, very light atmosphere with teenagers and the public in general (which is hard for me anyway, but I push myself since I have bills to pay). It's non-negotiable that I am going to lock myself in the computer room for a little while and catch up on links or blogs or whatever I have to do to calm down a little bit. You work with children too so you're likely experiencing a loud, unregulated atmosphere as well. I cope a bit differently because PMA is something I have ALWAYS lived with, it just never had a name until recently. It's always been easier for me to accept what I have to do and then do it because that's the way my personality is set up. The PMA is something I do not have control over so I have just learned to go with it, because treating it takes patience and there's no immediate solution. Honestly, I'd rather deal with it on a daily basis than go through the headpain phase one more time, myself. I get fed up from time to time and meltdown but if that's what has to happen for me to continue on the next day then it's OK. It's inevitable.

I don't know how easily it would be for you to swap neurologists but if it's that difficult to get a hold of her you either need to go to the office sooner and find a nurse to talk to or keep calling them and leave them messages, or find someone new.