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Old 05.12.2014, 20:59
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Support for migraine, epilepsy and related conditions

About 6 weeks ago I was taken to hospital 3 times for suspected stroke. It turns out the migraine aura I've had since age 14 had got much worse very quickly. I'm ok now, but when I was lying at home scared recovering, talking to people with epilepsy and similar experiences, helped me cope. I realised I'd like to know and support other people with similar conditions in Switzerland, so I've set up a local support group on Facebook, following the model of an international group that helped me. Link to join up - https://www.facebook.com/groups/493349524140881/
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Old 05.12.2014, 21:43
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Re: Support for migraine, epilepsy and related conditions

I had what I think was an ocular migraine (I looked it up) about 3 weeks ago. I saw zig zag lights, when I tried to read, there was a kind of "hole" in my vision where I couldn't see anything, and I couldn't read properly.
I was trying to read out loud to my husband and once or twice said completely the wrong word. I then couldn't remember the word "potato".
My sister has had this happen a number of times since she was a child, but only maybe once or twice a year, so I recognised the symptoms and it didn't scare me, otherwise I think that I would have thought I had had a stroke.
Is this what you call an aura?
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Old 05.12.2014, 21:45
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Re: Support for migraine, epilepsy and related conditions

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I had what I think was an ocular migraine (I looked it up) about 3 weeks ago. I saw zig zag lights, when I tried to read, there was a kind of "hole" in my vision where I couldn't see anything, and I couldn't read properly.

I was trying to read out loud to my husband and once or twice said completely the wrong word. I then couldn't remember the word "potato".

My sister has had this happen a number of times since she was a child, but only maybe once or twice a year, so I recognised the symptoms and it didn't scare me, otherwise I think that I would have thought I had had a stroke.

Is this what you call an aura?

I think so. I've had it about 6 times, usually when sick, a weird geometric pattern lasting about 30-40 minutes.
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Old 05.12.2014, 21:50
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Re: Support for migraine, epilepsy and related conditions

Yes, mine lasted about 20 to 30 minutes.
I had just been running and had been under some stress that week, so put it down to that.
Hopefully it won't happen again. Hope you are both ok.
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Old 05.12.2014, 21:54
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Re: Support for migraine, epilepsy and related conditions

I find the zig zag pattern reassuring, as it is very common with migraine. I had a terrible one with seizure symptoms a few years ago, so glad of the zig zag as it meant I knew I wasn't having a stroke. I hope you don't get any more.
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Old 05.12.2014, 23:30
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Re: Support for migraine, epilepsy and related conditions

I get optical migraines (and reg ones) way more often now I am in France. I hate it because I can do no work then! zig zags, odd photos can do it. I saw a cool shot the other night I took and BOOM migraine within 3 seconds.

They are wicked things! I wish I knew the cure
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Old 05.12.2014, 23:39
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Re: Support for migraine, epilepsy and related conditions

I've been getting aura migraines every now and then for about 10 years now and nothing could help me. Lately they've been getting stronger and from full head they're turning to migraines (as my neurologist told me some time ago). Maxalt (rizatriptan) is the only thing that could bring some relief. I don't get hellish intensity like described above but I get them for long stints. I once slept, woke up, slept the next night and woke up again with the same headache. Nothing could help me until a doctor prescribed rizatriptan.

Also very relieving is putting my feet in warm/hit water and put a cold soaked towel around my head.

Keep hydrated, and hang in there. It sucks big hairy sweaty balls and there is next to nothing we can do to avoid
them...
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Old 05.12.2014, 23:48
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Re: Support for migraine, epilepsy and related conditions

If your migraines are really debilitating, you can talk to your doctor about Topamax. It's an epilepsy med that works for some as a migraine preventative. Along with old-school 1960s migraine narcotics, it's the only thing that let me get my life back.

Disclosure: I am not a doctor! Talk to yours about risks/side effects vs. benefits.
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Old 05.12.2014, 23:58
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Re: Support for migraine, epilepsy and related conditions

I was referred to a neurologist 4 years ago because I was having up to 8 severe migraines in a month, each of them wiping me out for at least 24 hours.

We tried several different medications. I now have an imigran injection pen which I use for moderate and severe migraines, and if it's only a little migraine I take a combination of motillium, irfen and maxalt (in that order). I sometimes take the motillium with the imigran too if I'm feeling particularly nauseous.

I also take an antidepressant called trittico that was specifically chosen because it would target my depressive symptoms and it is also a migraine preventative.

Most of the time I can now function normally within an hour or so of taking the medication.

I saw my neurologist this week. In the last three and a half months, I have only had two migraines.

My neurologist said I am a classic example of someone whose migraines are directly linked to their psychological state.

So for many reasons, I'm hoping the migraines continue to reduce in frequency.
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Old 06.12.2014, 01:31
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Re: Support for migraine, epilepsy and related conditions

Lovely, speak of the devil......
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Old 06.12.2014, 03:15
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Re: Support for migraine, epilepsy and related conditions

In case anyone is interested in one option.. I've had frequent migraines since an accident two years ago. Last summer, I started a ketogenic diet to see if it would help my other symptoms. I recently realised that I haven't had a migraine in four months, and my vertigo symptoms are almost gone!

If anyone is interested in trying this out, it's been proven to work for epilepsy, so I didn't see a problem with trying it. It's basically a high-fat, low-carb diet, medium-to-low protein diet. It's done wonders for me because I couldn't get much from my neurologist here (flew to scandinavia to see a specialist last year).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321471/
see: The KD in Migraine
Migraine is a paroxysmal neurological disorder having considerable clinical phenotypic overlap with epilepsy (Rogawski, 2008). Although the intrinsic mechanisms underlying seizures and migraine attacks differ in many fundamental respects, there are theoretical reasons to consider the KD for chronic migraine. Both disorders involve paroxysmal excitability changes in the brain, and there is considerable overlap in the array of pharmacological agents used to treat these conditions. Although it might seem unlikely that an individual with migraine would undertake such a complicated dietary regimen as the KD, in light of suboptimal alternatives, this choice is worthy of consideration, particularly in the medically refractory population (Maggioni et al., 2011).

Last edited by crazykittylady; 06.12.2014 at 03:26. Reason: Added link to Front Pharmacology
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Old 06.12.2014, 09:39
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Re: Support for migraine, epilepsy and related conditions

6 whole peppercorns in a glass of milk, apparently cured my dad of a lifetime of migraines, a remedy suggested to him by a weather Lama in Bhutan.

Weird but it worked...
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Old 06.12.2014, 09:40
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Re: Support for migraine, epilepsy and related conditions

I've had aura migraines since I was a teenager. In my case, the auras are actually much more debilitating that the head pain itself.

It starts with smell hallucinations, usually lasagna (?) or garbage. Then comes the nausea, and the extreme light and sound sensitivity. I can't watch tv, sometimes not even read properly as my vision gets blurry.

In my case, migraines are hormone-related. I had them every month when I had a teenager. Then they reduced in frequency when i started taking the Pill. They're now very occasional after my 3 pregnancies.
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Old 06.12.2014, 10:21
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Re: Support for migraine, epilepsy and related conditions

I have had migraines since my teenage years which came hand in hand with the onset of puberty. They were awful - blurry vision, vomitting, and painful headaches. Classic Migraines. Then for many years, whilst I was on the Pill they disappeared. But after having my children, I had they came back and then suddenly with no warning. I had two seizures over a two month period. So after going through many of the standard test I was labelled with epilepsy at the age of 32. Through medication, the seizures stops but my migraines did not. By now my auros, were getting worse. I would lose vision in one of my eyes. Which would be my 30 minute warning to get home and into bed before the pain of the headache would kick in. It wasn't until we moved to the Netherlands and I saw an amazing Neurologist who finally diagnoised me with "Migralepsy". That as a long term Migrane sufferer, I was now having seizure because of my migraines not because of epilepsy per say. So now I take medication for my seizures as well as my migraines. I do still have small auros but I am still working trying new medication levels.
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Old 23.09.2015, 10:30
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Re: Support for migraine, epilepsy and related conditions

Old thread .. New aura!

I've just had the big zigzag move across left to right and now feeling dizzy and sick .. Great.

I get it without sore head roughly every six weeks.. It's horrible but seems like not much point in seeing the doctor. Although today was particularly crappy feeling.

Any miracle cure yet?

https://en.wikipedia.org/wiki/Scintillating_scotoma Seems very like what I get.
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Old 23.09.2015, 10:45
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Re: Support for migraine, epilepsy and related conditions

If you take a painkiller (such as Tylenol) as soon as you get the first symptoms of your migraine such as an aura (zigzag pattern, hole in field of vision...) it will take the edge off your pain.

No miracle cure, but Novartis and another company are joining forces...finally!... to do some research and develop something. Could it be that a CEO is affected, and now believes us, mere mortals, of the debilitating pain of a migraine?

http://www.pharmafile.com/news/49845...ine-treatments
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Old 23.09.2015, 10:51
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Re: Support for migraine, epilepsy and related conditions

I actually don't get the sore head.. I might actually prefer that if it meant none of the other symptoms..
Nausea, Feeling of dread, ringing ears, whole body tense and that big damn coloured zig zag of blindness.

And then the zig zag goes and the other symptoms start to fade.. and then left feeling exhausted, probably because all of the muscles have been tensed..

All that while sitting at work trying to look normal.



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If you take a painkiller (such as Tylenol) as soon as you get the first symptoms of your migraine such as an aura (zigzag pattern, hole in field of vision...) it will take the edge off your pain.

No miracle cure, but Novartis and another company are joining forces...finally!... to do some research and develop something. Could it be that a CEO is affected, and now believes us, mere mortals, of the debilitating pain of a migraine?

http://www.pharmafile.com/news/49845...ine-treatments
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Old 23.09.2015, 10:59
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Re: Support for migraine, epilepsy and related conditions

I have to say that I feel lucky that after I take just the acetaminophen, these symptoms improve significantly plus the pain is more manageable. I still feel eerie, but the vision regulates back to normal, the hearing still sensitive but not as painful. The smell - well, I am supersensitive as is, so cigarette smoke, perfumes, and anything strong makes me .
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Old 23.09.2015, 11:18
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Re: Support for migraine, epilepsy and related conditions

I get the Scintillating Scotoma in both eyes together from time to time, usually months apart, sometimes a lot less. At its worst I've had to pull over while driving to let it pass.

But it never develops into the classic migraine headache. Just the visual disturbance, which sometimes induces slight nausea, and it always passes within about half an hour with no lasting effects.

It appears totally unrelated to any external factors, tiredness, food, blood pressure, exercise (or lack of) or anxiety. Just comes out of the blue and goes away in time.

I've mentioned it to doctors, but the consensus seems to be no idea of a cause or a preventative and/or cure and aren't worried by it.
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