This may sound strange, but does anybody else get an aura where they smell sausages?
I feel so silly writing this but I often get the smell before I go to sleep, quite distinctly that no one else can smell and is not related to the food we cooked at home and has been present in other places when I have gotten over tired. I usually get it just before I go to sleep or when I am extremely tired, which is when I am more vulnerable to focal seizures.
I have read that people get a metallic taste, but was wondering whether anyone else has had this particular smell- is it common? Are there other smells I can look forward to enjoying?
Should I bother my dr with this? Apart from this seizures have been controlled, I hate bothering the dr.
Hi...hope you folks don't mind, but I have just come across your site from the NRAS site....it suddenly popped up whilst I was reading posts.
I have had RA for nearly 20 years....all going as well as can be expected,but I'd like to ask a question about epilepsy.
A good friend aged 70 has "episodes" she will feel terrible & sometimes vomits & then she has something like a seizure...her eyes roll back in her head & she shakes very violently...I have only seen her have one of these episodes once....but to me it looked like some sort of epilepsy. It can last anything from 30 minutes to a couple of hours. She won't tell her doctor what really happens during these episodes & it worries me.
My Godson has epilepsy & so I have seen seizures before. He is now well controlled, so I know life can go on quite normally for people with epilepsy.
But what I would like to ask is it possible to have epilepsy that only causes seizures maybe once or twice a year?
Can you tell me if there is a definitive test for epilepsy...something like the blood tests for RA?
By the way Msminellie .....I have an aura that I can smell coffee when I am about to have a migraine ...when I first had it many years ago I used to look around for a coffee shop. My doctor tells me it is not unusual with .migraine...maybe it's the same with epilepsy?
Thanks for your reply and for sharing about your aura (though I am sorry you have migraines). I think that the smell of sausages is probably also something to do with my epilepsy diagnosis it could be a lot worse, it just feels so strange.
Regarding your friend:
1. seizures may be caused by epilepsy a seizure disorder or be provoked (ie have a concrete cause (you can have a seizure because your blood levels are not balanced (low bloodsugar and other markers, hit your head and have swelling on the brain etc). It is always best to get checked out as there may be something behind them such as a brain tumour, or something less scary but easier to address (like making sure you're well hydrated and blood sugar doesn't get too low esp. if you vomit).
2. Some episodes that look like seizures are not seizures (some syncope or other disorders). Another reason why its good to get checked out. The longer seizure activity you have described might indicate something else... but it is best to speak to your friend about it - and see if they have these episodes regularly or perhaps ask them why they are reluctant to speak to the dr? Perhaps they are worried about the consequences?
3. Depending on cause/type of epilepsy you can have different types of seizures and different frequencies of seizures depending on the triggers etc. So it could be possible that a person just has two a year because they got run down or just have one in their lifetime etc. You may be more seizure prone (epileptogenic) or less.
4. Diagnosing seizures is best done with a Dr and neurologist or epileptologist. There are tests, but it depends on the cause/type of epilepsy as to whether it is easily diagnosed... usually an EEG is performed to measure the type of brainwaves that you have. Good news, it can show/capture paroxysm/epileptoform activity but bad news is that it can be hard to do so (it may not be always happening in the brain). Best news is that you get to wear a really cool hat or alternatively have loads of electrodes gelled to your head (not painful) and you get to put your feet up and recline back in an armchair or bed close your eyes and relax
If there is any doubt about your friend, I would urge them to see a doctor and let them know the frequency of the episodes, what happens before/after (where were they, what were they doing, is it related to being hungry, stressed, tired, are there strange sensations physical/emotional before/after), do they remember the episode, what do observers see happen physically, how long does it take to recover.
It might be nothing serious. It could be something small that they need to keep an eye on or just manage with small lifestyle changes.
If they are afraid to tell the dr incase something is wrong with them then try to reassure them that a diagnosis is not the end of the road- it can mean treatment + cure - or management (and better lifestyle).
Good luck - you are obviously a very kind and caring friend
Thank you so much Msminellie. Unfortunately my friend hasn't been referred to any sort of consultant. I think either she is so out of it when she has these episodes she really can't tell her GP what happens. ...or she doesn't want to say how bad they are. She has great faith in what I think is a very mediocre doctor who doesn't ever seem to refer his patients on for specialist investigations.
She was referred to an ENT surgeon, but he found nothing amiss.
I do think she fears losing her driving licence & I have quite bluntly told her better that than have a terrible accident, but I would probably worry about that too...but I am much less fearful than she is....I would want a diagnosis & deal with it.
I will try to introduce some of the information you have given me....there may just be something that persuades her to open up more to her doctor so that he can get a grip on the situation & send her for some tests.
Thank you again, I really am very grateful for you comprehensive reply.
It's trying very hard to snow here tonight.....pretty to look at from indoors...but the chaos it causes......horrid!
I'm glad you found the information helpful - sorry that it was so much!
Just a quick note to say that in many cases, if you have epilepsy (or other disorders) and treat it with medication you may be able to drive again as long as the dr. signs off on it and is satisfied that the condition is controlled. It is annoying and depends on the epilepsy etc. but it doesn't mean an end to life as we know it for good.
Also, if you or a gf/bf/spouse have witnessed an episode and are able to describe it, you may also go to the appointment to give your observations about the types of movements made, length of episode etc. (if your friend is comfortable with it and doesn't remember what happens).
That is what I am trying to bring about (accompanying her) as I have witnessed an episode)but she is resisting & I won't force the issue. I'm wondering what exactly she is telling the doctors?
My husband sometimes smells burning leaves when he is about to get a migraine. In reading about "phantom" smells on the internet, I see that people may smell much stinkier stuff than sausages or burning leaves.
Burning leaves - makes me think of autumn bonfires and bonfire night.
I guess we are both lucky considering the alternatives.
It is interesting to see that our brains are so complex and the results!
Are they "normal" migraines? My sister has recently been diagnosed with hemiplegic ones with little pain but temporary paralysis and has yet to work out whether there is an aura or not.
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