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Questions about migraine aura

Discussion in 'Neurological/Neuro-sensory' started by mermaid, Dec 18, 2014.

  1. mermaid

    mermaid Senior Member

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    I have been ill for nearly 10 years with ME (or I was speculating recently that perhaps I just have a collection of autoimmune illnesses, principally Hashimoto's, but for now I will call it ME as I have varied symptoms). I had a relapse after whooping cough 5 years ago and have been trying very hard since then to improve my function to pre relapse days.

    I am doing pretty well in the last few months I feel after researching, having tests, changing diet, adding in many supportive supplements.....digestive symptoms are on the wane after a HUGE amount of work and diet discipline. My immune dysfunction is improving - I get proper colds now, and they behave normally, and I am pretty good at sorting them out quickly. My stamina has improved a bit, but maybe not as much I think. I have been doing more, but maybe I don't have the energy I thought I had and that could be contributing to the problem I outline below.

    My other main symptom is migraine aura - I don't get headache, but I can feel quite brain damaged after one, and the effects last 2 days (clumsy, foggy, a bit disorientated sometimes). I did have a spell a few years ago when I didn't get them very often, but in the last year it's been around monthly.

    Now they are happening more, and I have had 3 in 2 weeks. My triggers are 1. using too much energy, 2. stomach pain, and 3. cold virus attacks. I can help prevent the first 2 but not the last one so easily. I am now experimenting with increasing some supplements I saw mentioned on the Migraine Trust site - magnesium, CoQ10, and B2/Riboflavin. I was taking all 3 but not in the amounts they mention that were used in trials. Also I am getting support from my medical herbalist, though at the moment she is not using Feverfew on me, but thinks that Cats Claw may be better for the whole system support.

    Also I wondered why I am getting more of them - I even wondered if how I was previously protected me in some way and now I am in a different mode neurologically and more exposed. I am not a scientist so I don't know enough here, but I know there was some research last year into migraines, and especially the aura that showed tiny lesions on the brain and changes in the white matter. http://www.medicalnewstoday.com/articles/265345.php

    I note that recent research into ME sufferer's brains also showed changes in the white matter (ie reduced) - or have I got that wrong? Is there any link here or am I barking up the wrong tree? http://forums.phoenixrising.me/index.php?threads/possible-brain-biomarker-for-me-cfs-found.33454/

    I did a search for migraine aura on here, and didn't come across very much. I wondered if many other people have them, as I had thought they were pretty common in PWME. Any other thoughts on things that might help with them? I am trying to avoid medications initially, as it would be good to avoid if I can. I don't take any prescription medications at the moment other than my thyroid meds, and I take T3/liothyronine only.
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    I have had the aura without the headache also, though come to think about it, it hasn't happened in a long time. I haven't identified triggers but a dose of rescue remedy seems to stop the aura in about 15 minutes--less if I take it immediately. And yes, I have experimented with not taking rescue remedy and the aura lasted a few hours.

    Sushi
     
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  3. Mij

    Mij Senior Member

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  4. jimells

    jimells Senior Member

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    I never had migraine attacks before this illness, but they are the bane of my existence now. I've never had the classic migraine aura that announces the pain is about to start. I used to have what I described as "visual disturbances" - parts of my field of view would be distorted, sort of like looking through a kaleidoscope. The neuro claimed they were "silent migraines" but I'm not so sure.

    At any rate, I haven't had any for several years. They were kinda entertaining, as long as I wasn't driving or operating equipment. Most of my neurological symptoms have improved, including the severity and frequency of the migraine attacks. I attribute the improvement to CoQ10, but who knows...

    p.s. The episodes never lasted more than about 15 minutes.
     
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  5. Sushi

    Sushi Senior Member Albuquerque

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    This is the form the aura takes for me--kaleidoscope of light. It was awful when it happened when I was driving. I'd pull off, take Rescue Remedy and wait till I could see again.

    Sushi
     
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  6. Kina

    Kina

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    I have these, I think the proper term is 'Ocular Migraine' -- http://www.allaboutvision.com/conditions/ocular-migraine.htm
     
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  7. Mij

    Mij Senior Member

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    I had a friend with FM (not ME) who experienced this a few times so she went to the emergency because she thought she was having a stroke. The doctor told her it was not a migraine because migraines don't start in your 60's.

    I've had migraines (with nausea and headache) since I was 13yrs old, but I only get them every few years. The aura's that I've experienced without the pain is the same aura as my regular migraines with pain. The aura's without pain can continue on and off for a few days, but the pain migraine aura only last 20 minutes and then it's completely gone.
     
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  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Migraine in women can be related to hormones and worsen during childbearing years. The good news is it's supposed to get better later.

    It's thought that migraine can also become associated to ME and get worse in relation, or have the same trigger to get worse.

    I tend to have aura events (visual, and disruptions in cognition and hearing, and so on) without an increase in headache, although rarely I do get a more severe headache. I did try CoQ10 without much luck, but did not try a lot of other herbs. I use a prophylactic prescription now because it was so severe I was unable to cope at all without.

    Before they were severe, I avoided foods, flowers, cleaners, and so on, that would set them off, and avoided going too long without eating (I still do, but this was reasonably effective, at that point). Staying well hydrated helps, too.

    It can help for me when one is coming on to eat (or drink) something piping hot, or rarely to drink something ice cold. If it is not caused by caffeine, a small amount of caffeine can help. Getting away from lights and noise (and getting to a comfortable temperature, if that's a factor) can also help.

    Changing the light on my computer, like using a dark screen (several options here at PR, but on random sites, I like Hacker Vision on Chrome) or installing f.lux (I hear there is a new alternative to this, but can't recall what it is) helps reduce the frequency of migraines.

    Also a good prescription for vision correction, as looking at things already blurry or making your brain concentrate to sort out what it's seeing never helps.

    Incandescent bulbs are better than fluorescent lighting, especially the old mercury-free style of fluorescent.
     
    Last edited: Dec 19, 2014
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  9. Misfit Toy

    Misfit Toy Senior Member

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    My migraines started when I was 37. They could be due to fibro or ME but my Grandmom had them terribly when she went into menopause. I am now 44 and in perimeno and I get them every month with my period. Are you going into perimeno or meno?

    Hormone changes in women are the most common reason, or severe stress. Many get them during menopause, for me, I am not there yet but I am in the before stage. My grandmother, according to my mom had them all of the time. In all ways hormonally, I am falling in line with exactly how she went through "the change." For my mom...it was a breeze.

    Aura's for me present themselves in blurred vision. I keep searching for glasses. I can't see clearly and I become exhausted. I have one right now. I also have my period. I have had 6 days of a migraine. I am zonked.

    When I didn't have this chronic BS of how this migraine is working, I would have severe fatigue with the migraine and afterwards. It's like I had been in a war and in fact, I had.

    This migraine started with blurred vision and I had to go to bed early a week ago. I couldn't keep my eyes open. Next day, voila, migraine. Been here ever since. It dissipated a bit and then after a good night's sleep...I woke up exhausted again today and what came on..??? The migraine with a vengeance. Fatigue precipitates my migraine and a lack of appetite.

    Willow J is right...if I make myself eat, for whatever reason, the migraine can ease up. Hot food, also. Food helps it...not eating makes it worse. No chocolate.

    I am on prednisone, will be taking Depakote tonight and I am at my wits end. It amazes me how something "again" has come on...a symptom that refuses to leave and I am wondering if this is how my life will be from here on out, with this awful symptom that is the most debilitating of them all. I don't want to leave my bed.

    I have heard B2 is the way to go. Also, Valerian root, Black Cohosh....it depends. Plenty of water and I drink caffeine if it's that bad...I have no choice. I also take imitrex, but it doesn't sound like you have the actual pain.

    That's a good thing. Continue on your search and keep trying to get better with your holistic approach. For me, that wasn't cutting it.
     
    Last edited: Dec 18, 2014
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  10. jimells

    jimells Senior Member

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    For me, the migraines are always part of PEM. No PEM, no migraine. As far as I can recall, the visual disturbances were not associated with PEM, which is why I question the diagnosis of "silent migraine" in my case.

    A neuro gave me a long list of stuff I'm not supposed to do or eat. Trouble is, none of those items trigger a migraine for me. The one item that does trigger the migraines, PEM, was not on her list.
     
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  11. Valentijn

    Valentijn Senior Member

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    My migraines started when I was 11. When I was about 21, I figured out that they were caused by MSG/E621, and largely avoided migraines after that. Then I had a three-week hemiplegic episode, realized there were other sources of free glutamic acid, and a neurologist prescribed folic acid which killed the migraine half an hour after taking it.

    So now I try to avoid all forms of MSG/E621, and I take extra folate any time I'm likely exposed to some of it. It's now been about 8 years since I last had a migraine.
     
  12. daisybell

    daisybell Senior Member

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    Sometimes I can get rid of a migraine aura by taking chewable aspirin... Nothing else works for me.
     
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  13. mermaid

    mermaid Senior Member

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    Thank you so much all of you for your very interesting replies. I had read through an old thread on here first which @WillowJ contributed to, and what you describe Willow is most like my migraine aura experience.

    Several of you mentioned the relationship of migraine with female hormones @Mij @Misfit and @WillowJ and I knew about this aspect from my sister in law whose own migraines are improved now she has gone past the menopause.

    That is the curious thing though.....I did start migraine aura when I was in my 20s, but sometimes went years in between. They did get worse in my mid 40s when I was perimenopausal. I had my last period when I was 49 and I am now 62 so I am well past the menopause, and yet mine worsened with my ME relapse 5 years ago.

    According to the Migraine Trust we all have different triggers, and @Valentijn seems to have had MSG as a trigger. Is that monosodium glutamate? I found I had issues with that in my 20s and stopped any intake, so maybe I prevented them for years by doing this! Now I have new triggers - ie fatigue/PEM, fighting cold viruses, and stomach pain (probably related to the Vagus nerve), so I am trying to help each of them now.

    @jimells Yes, I guess PEM is one of my triggers too since if I have overdone things it's like my body is reminding me that it hasn't got the capacity to cope.

    Interesting to hear that Rescue Remedy can help @Sushi Do you feel fine after the visual issues go? I am usually OK on the day, but feel wiped out the following day so I feel I need to prevent them if possible.

    @WillowJ and @Misfit Toy mentioned about sometimes averting a migraine if you manage to eat at the right moment. Actually this is interesting because I feel as if I have just mended my leaky gut after a long struggle, and I am voraciously hungry for breakfast and lunch especially at the moment, and it's as if I am needing to shovel in more and more energy. I am eating high quality food, and I have a hunch maybe I need to increase some of my supplements (which I am doing) and add in Carnitine as I tried to take it in the past (I tried acetyl-l-carnitine) and was unable to tolerate it. I had the lowest scores on Carnitine ever recorded by Dr Myhill, though it did improve considerably over 4 years even without supplementing as I had it retested. I am wondering if to try Carnitine fumarate as I see it mentioned on PR as useful for the Krebs cycle.

    Apart from the whooping cough relapse 5 yrs ago, I also had some 9 mths before it a big operation on one of my eyes - for a macular hole repair, and followed by a cataract op, so now my left eye does struggle to read, and it's more dependent on my better right eye. So sadly I reckon that is contributing too to the migraine aura as I need to enlarge things now. Maybe I need to have another eye test, though I had one a year ago.
     
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  14. physicsstudent13

    physicsstudent13 Senior Member

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    there is an FDA drug topamax which is supposed to help and widens the blood vessels in the brain (don't know if its true). but it causes bad brain fog and cognitive impairment for me; I took it at 150mg which was too high I think then 50mg and 25mg and still the same bad fog.
     
  15. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    There are other migraine medications which are thought to work by narrowing the blood vessels to relieve pressure on the brain. Triptans are thought to have this mechanism. For a vascular headache in the back of the head, this can be incredibly effective, but they are old drugs and do not have a "clean" manufacturing process and I found the one I tried to cause a lot of MCS symptoms.

    Plus it did nothing for aura.

    In everything I read, no one is sure how Topamax /topiramate works (they have some guesses but don't know which are important) but it is known to cause sleepiness (for example) particularly at higher doses.

    Topiramate is an anti seizure drug and should not be started or stopped abruptly. Besides the risk of adverse effects, the medicine is better tolerated when the dose is begun small rather than introduced abruptly.

     
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  16. physicsstudent13

    physicsstudent13 Senior Member

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    I have migraines once every 10 years so I don't know how safe these drugs are. Is it a good idea to widen the blood vessels in your brain?
    I mean if it helped cognition then why does topamax cause brain fog and cognitive impairment?
     
  17. jimells

    jimells Senior Member

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    On the migraine forums most folks call this stuff "Dopamax". For some reason neuros hand out these anti-sezure meds like candy. I guess it works for some folks. My current neuro (who doesn't actually treat my illness, since I refuse to take these meds) claims he can help most migraine patients by slowly increasing the dosage to very high levels.

    Poor people in the US need to be very cautious about getting started on medications that have severe adverse effects from sudden withdrawal. Access to healthcare is so precarious that impoverished patients can be cut-off suddenly, with very bad consequences.

    This isn't always due solely to arbitrary decisions by zealous bureaucrats. I am currently trying to restore health and other social benefits that I lost simply because the local social workers failed to complete an annual review before the computer said, "Time's up!" and automatically cancelled my benefits. They screw up and I pay the price, as always. Everyone involved acknowledges that I still qualify, but Social Security won't fix it until the state tells them to. With a state governor who is openly hostile to poor people (and never misses a chance to demonstrate it) fixing this mess could take a while...
     
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I know this is an old thread, but had to respond to this. Having had two brief episodes of what I self-diagnosed as scintillating scotoma in previous years (mine looked like the one at the top of this page), I had what appeared to be a full-blown migraine for the first time at the age of 60, diagnosed as such by a neurologist after a brain MRI and neck ultrasound, which I think were to exclude stroke and other causes.

    Since then they became more frequent and disabling, until I was briefly hospitalised last month after one apparently led to hyponatraemia (low blood sodium, to which I appear to be especially prone). I have found some scientific papers that confirm that migraine can cause natriuresis (sodium loss in urine). Here is one.

    I started taking Feverfew on 17th December, since when (touch every bit of wood and cross everything possible) I have been migraine-free, with no apparent adverse effects.
     
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  19. Mij

    Mij Senior Member

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    @MeSci So sorry you to hear you were hospitalized :( I know a few people who say FeverFew is very effective, glad to hear it's helping you.

    Could you provide that link to that paper you are referring to?

    Do you also get nausea, aura like vision problems during this? My FM friend did not experience any other symptoms except the severe headache.

    My migraines are probably hereditary, my grandmother suffered with them. For me, they started around age 11. I used to get one every 2yrs. They are diminishing as I get older.
     
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Which paper? I provided a link to the one about sodium loss.

    Yes, I get/got nausea, sometimes auras, but headaches actually became rare or mild. I also felt extremely cold. The scariest symptoms were numbness, confusion, disorientation and feelings of losing consciousness, and it was complicated by aphasia (aka dysphasia) which meant that I couldn't tell people what was wrong. The last one also apparently included amnesia, as I have no memory of the two scans I had in hospital.

    I asked my brother if there was any family history of migraine, and he doesn't know of any, but illnesses seemed to be a bit of a taboo in my family - as though they were something to be ashamed of!
     

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