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  1. #1
    Lanky Lass East Hill's Avatar
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    Migraineurs, check in here

    As previously explored in the Pain Meds thread, I am a migraineur, and have been for many, many years. My migraines are Common Migraine, without aura. I do occasionally have episodes of fortification illusion, but have never had a migraine after experiencing the fortifications.

    I have run through most of the current popular medications, and wound up back where I started--injectable Imitrex.

    Triggers--MSG, heat, glare, change in weather, certain smells (such as perfumes, gasoline/petrol). Plus, what Mr. East Hill and I call 'mystery' triggers, as I sometimes have a migraine without a clue as to the trigger! I have to be very careful not to get too hot when exercising, as it will inevitably produce a migraine, so I'm not a really competitive person.

    Doctors for years have tried to get me on the evil road of anti-depressants. They do no good, have caused me to gain a lot of weight and not made me feel good. Last go round was Cymbalta, which after just two doses caused me to be paranoid, suicidal, and a host of other bad things. The aftereffects from the two doses of Cymbalta remained for over two weeks. Needless to say, I will never agree with a doctor to go with the prophylactic approach again.

    I am especially interested in your triggers. Have you allowed your physician to try you on the propranolol /anti-depressant route, and what was your success/reaction?

    I'll end with saying, man, you know I've got empathy!

    East Hill
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  2. #2
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    present! * raises hand*

  3. #3
    Tom (ex)Builder twahl's Avatar
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    I trigger on stress, and Midrin generally takes care of it. I guess mine are fairly mild, although when I have them they don't seem that way to me. Occasionally they are worse, but I'm allowed up to 5 Midrin (2-1-1-1) per episode and if I take a nap, I'm usually OK. No long term drugs have been suggested in my case, and I find that if I deal with my stress better, I often go for a couple of months between migraines.
    Tom

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  4. #4
    Lanky Lass East Hill's Avatar
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    I guess I like to know about triggers (BDG, you did NOT answer the questions ) because they are so individual. I do not get migraines from stress. Must drive the physicians mad dealing with such odd events, but that's why physicians have us keep diaries. twahl, you are very lucky not to have to use any of the xtriptans as they can be very expensive.

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  5. #5
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    I guess I'm a new member in the club. I never have headaches and never really have. (well i sorta had one this morning, but i know what caused it. ) But last week I had a BAD episode of blurry, kaleidescope vision that lasted about an hour. It really freaked me out. The eye doc got me in immediately and diagnosed me as having had a migraine, without the headache. I think he called it an opthamalogic migraine or something like that.

  6. #6
    Third World Layabout crtreedude's Avatar
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    My wife used to get them. Now she avoids unresolved issues. Honest, that is her trigger. She also has found that cured meats will make her more susceptable.

  7. #7
    Caustic Soccer Mom apclassic9's Avatar
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    My kid started to get migraines when he was 12 - usually a change in weather triggers them. The first one was really bad, as I had no idea what was wrong, and he tossed his cookies in our tent... fortunately, a person we were camping with recongnized the symptoms, and we loaded him up with ibuprophen. He generally uses Execdrin Migraine stuff, which usually does the trick for him, but it was REALLY exciting to know that, according to the school health center, kids don't get migraines. After they told him that, he generously puked on the health worker (good move, I thought). Fortunately, he has plenty of warning signals before one comes on, and taking the excedrine migraine puts them off.
    As with mud, life, too, slides by.

  8. #8
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    The only things I can think of for me is glare/bright light, and not getting enough sleep.

    I get nausea, blurry vision, pain across my forehead, sharp pain inside my head. The light severely worsens everything.

    I take a Fioricet prescription.

  9. #9
    Throw the stick!!!! LowCel's Avatar
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    I get what I was told are called complex migraines. I get blurry vision, see spots, have unbarable pain. My worst one they thought I was having a stroke. The whole left side of my body went numb including my face and tongue. I couldn't even put together simple sentences, actually couldn't even say my own name. Talk about getting rush treatment at the hospital. At one point I was going to the hospital for them about twice a month. No meds seem to help. At time imitrex will take a little of the edge off.

    For me triggers are scents, moving lights can do it. I can't handle those little crystals that people like to put in windows. I was told two of my biggest triggers were cigarettes (nicotine) and caffeine. I quit them both almost six years ago. Now I only get a couple of migraines a year and haven't been to the hospital for one in about six years either. The ones I get now are from being extremely run down from training, work, life and from stress.
    I may be fat but I'm slow enough to make up for it.

  10. #10
    Junior Member BisManDan's Avatar
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    I've unfortunately been part of this club for about 15 years now. Halfway though college I started getting them almost every day. I saw many physicians and eventually ended up on the low dose anti-depressant route. Hated every moment of it. I gave them up and just suffered through. I eventually stumbled on Excedrin. Simple, cheap, and works better for me than anything. My biggest trigger is going from a highly stressful time in life to a lower stress. I always dred finishing big projects at work, because chances are once it's over I'll have a headache. Other triggers are changes in sleep schedule. I'm usually up by 5am during the week. If I sleep in past 7am on the weekend I'll have a headache.

  11. #11
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    Quote Originally Posted by East Hill
    I guess I like to know about triggers (BDG, you did NOT answer the questions )
    yeah Im usually good at that!
    well,Im not sure what triggers it.
    I have migraines for about 2 to 3 days once a month
    i just have to ice it,take advil migraine and I usually get out of them.
    how twice a year, Ill get a weird vision on my eye, it feels like i cant see out of one eye and then Ill see sparks in my eye and about 15 minutes later, Im in bed wanting to vomit with a migraine,those are tough, I cant get out of bed or fonction.
    I do have a sensitive spot over my eye lid, if I touch it or bang it by accident, im sure to have a migraine.

  12. #12
    Wood Licker Maelstrom's Avatar
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    This is interesting (I don't get headaches btw, this is just an observation), every gf (and current fiance) got migranes. Differing degrees but they could never find something that worked 100%, my fiance currently takes an anti depressent to help moderate the issue, but essentially she lives every hour of every day with a slight headache, when migranes hit she is in the bedroom for 2 days with water, lights out in pain and blinding nasaea. Since starting the anti depressants she has had FAR fewer episodes than in the past. Being an outside observer I can see the change and how much better it is with the major episodes. However it didn't make a difference to the day to day suffering.

    Oh and my observation, I have never in my life met a male with migranes. I thought it was almost exclusive to women.

  13. #13
    Tail End Charlie Ritehsedad's Avatar
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    I get migraines with aura. When I was a kid the partial loss of vision really scared me. So much I never told anyone. It wasn't until I met my wife, who is a big migraine sufferer, that I found out that's what it is. Mine are generally mild, only one or two in my life where it was difficult to function. Today they are few and far between and usually consist of just the aura and occasionally a headache.

    My wife, on the other hand...In her life she has spent weeks and weeks and weeks in the hospital. She can't take imitrex because of the type of migraines she gets (it could cause a stroke). She takes meds every day. Thankfully, in September her neurologist put her on Verapamil (sp?), which is generally is prescribed for cluster headache, but has been great for her...no headaches since September!
    Why isn't 11 pronounced onety one?

  14. #14
    THC Freedom Fighter karmical's Avatar
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    i have to honestly say that i haven't had a serious migraine after being shown the medical marijuana alternative.

    very bright white lights, certain smells, lack of proper hydration seem to be my worse triggers...

    so when i feel it coming on, i usually just medicate, and thus far i haven't looked back.

    anybody else use marijuana or just pharmmies...

    i can not be the only one...
    Smoke all you want too, we'll grow more...

  15. #15
    (((Fully Awake))) Serendipper's Avatar
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    I have also suffered for years. Docs tried everything....they thought it could be anything from sinuitus to somatic illness to a brain tumour (I have seziures & migraines, sometimes I lose consciousness).

    Now that it's understood that I'm autistic I'm off pain meds, and my life is a whole lot better without them! (There is no known "cure" or treatment for HFA/AS) Cycling and writing are both great for me, and stave off stims and the external/internal pressures that lead up to a meltdown. Migranes are just a by-product of a meltdown. My triggers are many, as I am more sensitive than the average bear.

    Understanding yourself in the first step/most important toward healing.
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  16. #16
    (((Fully Awake))) Serendipper's Avatar
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    Quote Originally Posted by karmical
    i have to honestly say that i haven't had a serious migraine after being shown the medical marijuana alternative.

    very bright white lights, certain smells, lack of proper hydration seem to be my worse triggers...

    so when i feel it coming on, i usually just medicate, and thus far i haven't looked back.

    anybody else use marijuana or just pharmmies...

    i can not be the only one...
    No, you are not the only one. MM helps prevent sensory overload and anxiety attacks in autistics. Proven fact.

    Bernal Heights Dispensary FTW!
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  17. #17
    Lanky Lass East Hill's Avatar
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    Very interesting responses. I think the doctors had a hard time diagnosing me originally because I had migraine without aura. If I remember my medical history (where's Dr. Pete when you need him?), the definition of migraine was changed in the early 1990s, to include the type of migraine suffered by most of us, that is, without aura.

    apclassic9, I know I started getting migraines as soon as I hit puberty. I think many doctors just don't think that males get them, and so don't associate migraines with men. But, as your son illustrates, that's a mistaken assumption. See my response to Maelstrom...

    Maelstrom, my now retired neurologist told me that his practice consisted of about 50/50 men/women. I believe that the statistics still show about 90/10 women/men, but I think that's changing. I have actually met quite a few men who have migraines, including at least one whose migraines are worse than mine.

    Portis, it's a strange thing. I rarely get headaches. I get a lot of migraines. I also get the opthalmic type, and in fact had one just this morning. I went out for a ride on the mountain bike (first off-road ride on my new-to-me Fuji Thrill), and had to get off the bike and walk up one of the hills because I just could not see due to the fortification illusion. It was quite spectacular though, almost like the red/blue/yellow/white effects of a Juan Miro painting. No pain, and it was not aura.

    LowCel, I am glad I have never had anything that severe. It was frightening enough for poor Mr. East Hill when I first met him. I had warned him about the migraines, but he was completely unprepared for how gruesomely violent they were. It is still agonizing for him to watch me, because he knows that there's nothing to do to help, as even touching me makes the migraine worse.

    There are quite a few regulars amongst us who are sufferers. I forgot to ask, do any of your relatives suffer? Apparently common migraine, with or without aura, is inherited. So, my sympathy and empathy.

    East Hill
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  18. #18
    (((Fully Awake))) Serendipper's Avatar
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    The temporary blindness is hard to deal with. But I'm also an synthasthetic, so I hear tones to go with the colours. Right before my blood pressure drops, and I lose consciousness, I see everything as a "negative", like exposed film.

    Wierd. I've never discussed this with strangers. I should share this thread with the autistic community, and measure the responses.
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  19. #19
    Forum Admin lotek's Avatar
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    East Hill,

    As far back as I can remember (and thats a long way back) my father always suffered
    from "sick headaches" he used to close himself up in a dark room, took god knows what,
    and we had to tiptoe around the house. He was later diagnosed with Migraines with aura and
    also visual migraines without the headache part (weird).
    I had my first migraine at about 10 or 11 years old. My particular triggers seem to be
    smells, there are certain perfumes/colognes that hit me like a 10 penny nail in the sinuses, and the migraine is almost instantaneous. I do not get classic auras but do have some minor visual stimulation
    (pinwheels of light?). Tobacco always made things worse. For me relief was to be found in very hot
    baths, once I was full blown OTC meds did not work well (at least not US OTC meds) but found that
    Sinutab with codeine worked very well (or I just didn't care anymore ).
    I've never been prescribed antidepressants nor would I take them if I were.

    Marty
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  20. #20
    Lanky Lass East Hill's Avatar
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    Quote Originally Posted by Serendipper
    I've never discussed this with strangers. I should share this thread with the autistic community, and measure the responses.
    Strangers have no idea what it's like to have a migraine. Here you have people who have 'been there, done that'. I have to say, I was surprised how many of us can control their migraines with aspirin or other NSAIDs. NSAIDs have absolutely no effect on my migraines. I am also glad that Imitrex works for me, I feel really bad for LowCel. I would probably kill myself if I had to put up with that amount of pain with no relief.

    East Hill
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  21. #21
    Lanky Lass East Hill's Avatar
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    Quote Originally Posted by lotek
    East Hill,

    As far back as I can remember (and thats a long way back) my father always suffered
    from "sick headaches" he used to close himself up in a dark room, took god knows what,
    and we had to tiptoe around the house. He was later diagnosed with Migraines with aura and
    also visual migraines without the headache part (weird).
    I had my first migraine at about 10 or 11 years old. My particular triggers seem to be
    smells, there are certain perfumes/colognes that hit me like a 10 penny nail in the sinuses, and the migraine is almost instantaneous. I do not get classic auras but do have some minor visual stimulation
    (pinwheels of light?). Tobacco always made things worse. For me relief was to be found in very hot
    baths, once I was full blown OTC meds did not work well (at least not US OTC meds) but found that
    Sinutab with codeine worked very well (or I just didn't care anymore ).
    I've never been prescribed antidepressants nor would I take them if I were.

    Marty
    I remember one supervisor at work who wore atrocious perfume, and lots of it. She could be smelled over a hundred feet away. Instant migraines. She refused to believe that I was getting migraines from the smell, insisted that I was 'jealous' of her blinding beauty. She finally had to stop wearing it when I brought in a note from my doctor confirming that I had pointed out 'volatile' odour smells as a trigger five or six years before the supervisor appeared on the scene.

    East Hill
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    TRY EMPATHY & HAVE LOVE IN YOUR HEART, PERHAPS I'LL SEE YOU ON THE ROAD...

  22. #22
    Trans-Urban Velocommando ax0n's Avatar
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    My wife gets them on occasion and we spent about $8,000 on meds, MRI scans, X-rays, specialists, and who knows what else (no insurance). Our only guess is that it's stress triggered. She used to get them almost daily. We'll say some "herbal treatment" cleared that up (after having tried everything else).

    Now things aren't as stresful, and the occurances are rare. She's been off her "treatment" for over a year now. When it happens, though, it's sleepy time. We have blankets over our bedroom window, and it's pitch freaking black in there even if it's high noon outside. It's about the only thing that helps.
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  23. #23
    Throw the stick!!!! LowCel's Avatar
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    Quote Originally Posted by East Hill
    There are quite a few regulars amongst us who are sufferers. I forgot to ask, do any of your relatives suffer? Apparently common migraine, with or without aura, is inherited. So, my sympathy and empathy.
    My brother gets them but no one else that I know of in our family does. I don't believe his are as severe as mine. The one thing that I do know is that people that have never had one will never understand the affect that one has on a person. I would never wish a migraine on anyone, however in a weird way I kind of wish that everyone would have one (and only one) of them during their life. The only reason I say that is because then they would have an understanding of the pain we go through during one. This way they wouldn't just think they were some type of "excuse" or we are over reacting.

    My mom had one a few years ago. It's amazing how differently she acts when I get one now compared to before. She just didn't understand until she had one herself.
    I may be fat but I'm slow enough to make up for it.

  24. #24
    Tail End Charlie Ritehsedad's Avatar
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    My daughter gets em too. Not nearly as bad as my wife but worse than me.
    Why isn't 11 pronounced onety one?

  25. #25
    THC Freedom Fighter karmical's Avatar
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    Quote Originally Posted by Serendipper

    Bernal Heights Dispensary FTW!
    a friend of mine owns that place, i've got to get by there soon, heard nothing but good things...
    Smoke all you want too, we'll grow more...

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