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migraine sufferers?

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  • Original Poster

    I couldn't live w/o Imitrex, personally. All the SSRI's work to some degree for me. I go with Imitrex now because it's finally available in generic and I go through it at a...maybe not quite astounding rate, but pretty good clip. Even though I'm on daily systemic drug, that's as well controlled as it gets.

    As for dangerous, well...at the end of my undergrad career, in the late '80's, under a dr's care and with a war chest full of (basically useless) drugs (ever tried cafergot?), I was considering - SERIOUSLY considering - moving to England to become a registered addict, in order to treat them w/morphine. I do worry about Imitrex sometimes, when I have to push the dosage up, but from where I've been, all in all, I feel I'm in a pretty good place.

    It's just still...not a normal life. I'm not having a pity party - I just have to, occasionally, acknowledge the fact.
    Blog: The Continuing Adventures of an (ahem) Mature Re-Rider without a Trust Fund...but, finally, A Farm of Her Own!!


    • #22
      I have had some strange ones...

      I always suffered from the regular headache growing up as a kid. About two years ago I got an ocular migrane. Thought I was have a siezure. The eye doctor confirmed that's what it was.

      Fast forward to January 2010. I started getting severe migranes in my eyes. I wanted to dig them out with spoons they hurts so bad. Skipped the family doctor and went straight to my eye doctor again. He dialated and sent me straight to a specialist. That specialist sent me to a neuro optimolgist. She did and ton of tests and pretty much confirmed that I have psuedo tumor celebri. She sent me for a MRI to confirm that I didn't have any brain tumors and a Lumbar puncture to see what my opening pressure was. Normal for a person is 7 to 12. Mine was 25 so they ended up draining some fluid off my spine.

      What happened was, I had an increase in fluid that made my optic nerve swell close to the point of me going blind because my retinas were about to detach. That was only after a week of these headaches... I also lost a lot of my periferial vision. This was all caused from being on antibotics for acne... Im 28 and my face still looks like crap...

      Now for about the last three months or more, I get a vibration feeling in the base of my skull that lasts for about 3 to 5 seconds and then goes away but then brings on a dull headache that ends up consuming the left side of my brain and gets progressively worse until I am able to sleep thru the night. My blood work and neuro tests come back normal and the doc doesnt seem to know what is it or cares... I had one yesterday at lunch that I just got thru getting done at work and driving home before I was in bed for the rest of the night. If anyone has had this I am interested in knowing more about it.

      Sorry this is long and I feel for the others out here that suffer...


      • #23
        There was an off-topic day thread last year I think that was really helpful, OP. I posted it when I was just at the end of my rope and there were some very helpful suggestions.

        Mortebella, I don't know that morphine would have helped you. The few times I've been in the hospital with broken bones/meningitis/head injuries etc. and had morphine, it gave me horrible letdown migraines.

        I've tried about everything under the sun. What currently works for me is 500 mg magnesium oxide, a high dose of Topamax, Namenda (off-label Alzeimer's drug used for migraines) prophylactically. Imitrex shots and nasal sprays for treating headaches. Occasionally a Vicodin when nothing else works and I just need to sleep off the pain. Not too much sugar, enough sleep, not too much stress. Rubbing Ultra BenGay on my forehead. This is my favorite -- I call it my "perfume" and I refuse to leave the house without a tube of it. Sometimes I mix it up and go with TigerBalm if I want to go exotic.

        I still get a migraine or two a week, but usually don't puke and can usually operate pretty well. I have a headache pretty much every day but you just get used to it after a while. Occasionally I will wake up and feel pain-free and just wonder how wonderful it must be to not hurt all the time....if people really understand and appreciate not having chronic pain.


        • #24
          I too suffer from migraines. I have been on numerous medications, tried different diets and nothing seemed to help. Meds to prevent would work for a maximum of 6 months and then I would start having breakthough headaches. They would up the dosage as high as they could to control the migraines until it the meds were at an unsafe level and then it was time to try a new med.

          I am now on Topamax and it has been wonderful! I have had fewer headaches and am doing pretty good. I also limit my caffine and try to limit my stress levels. Itry to get plenty of rest at night and do have some meds that I take when I get a migraine. I can't take Imatrex or Zomig. Both work on my migraines but I'm allergic to them so cause havic with breathing and heart!

          I have a wonderful Dr that has really helped me find what works for me and has been very proactive. I have had other Dr.s that didn't take my migraines seriously. I didn't keep them as Dr's. I moved on and found a Dr that did take my migraines seriously and would work with me to find solutions that worked for me.

          Good luck! Migraines are no fun and can be dibilitating. Most people do not understand how serious they can be unless they have them or know someone that has them.


          • #25
            I get them too, and it's always kind of amazing to me how many people come out of the woodwork to say they get them when they find out I do!

            Fairly sure mine have allergy, hormonal, barometric, light, and food triggers. Mine are a lot better (a few times a year now) since I started taking Claritin every day, year-round, and got off estrogen birth control. It was actually a nurse who delved further into my migraines and knew about the WHO study regarding estrogen and migraines with auras--apparently estrogen birth control dramatically increases the risk of stroke in women under 30 who get migraines with auras.

            Anyway, the migraines have been a lot less scary since getting off that (6-7 years ago), so there's definitely a hormonal component for me. For a while they were like another poster's, where I couldn't form words properly--totally freaked out my husband, and was pretty scary for me also. I also had a few that I guess caused something like severe dyslexia. If I tried to read, I'd be looking at one word but my brain would be focused on/reading a word half a page away, or backwards. I developed new respect for people who have had seizures or who deal with dyslexia permanently!

            Nowadays the migraines usually start with blind spots, then progress through sensitivity to stimuli (smells and noise especially) and nausea to the pain. Mine, thankfully, usually last less than 8 hours from start of obvious symptoms to finish. Then I feel hungover for about the next 24 hours, although often remarkably clearheaded as well, which is interesting.

            I try to avoid MSG, nitrates, and red wine (the latter only became a trigger recently, sigh). Oh, and flax--possibly something to do with the phytoestrogens but I was unbearably cranky and more prone to migraines when I tried to 'be healthy' and incorporate flax into my diet. Also too much sugar and caffeine (1-2 cups of coffee a day is fine, more than that becomes a problem). If I let myself get hungry, and then deal with the hunger by eating sugary snacks, I'm just setting myself up for a migraine.

            I often will get one, and then another a few days or a week later, so now if I get one, I'll take ibuprofen prophylactically for about the next 8 days. Not much I can do about barometric changes or forced transitions from hot to cold (eg heated inside air to cold outside in the winter). For bright light (Florida in summer, anyone?) sunglasses and a hat seem to help. While driving, I consciously will rest my eyes/brain by looking at the greenery and/or shadows every few seconds, instead of the sunlight reflecting off the car in front of me.

            Hmm. Not sure if the above was useful for anyone else, but perhaps therapeutic for me! Oliver Sacks has an interesting book titled, simply, Migraine. I only read a bit at a time because it's simply not fun to read about one's own affliction, but it has some very interesting thoughts and there's a lot of validation and sympathy in there for the awfulness of migraines. There are probably other books out there with more in the way of treatment ideas, but it's the kind of book you can hand your spouse or family members to give them an idea of what you're going through, or if they think you're just 'making it up.'

            I think it's great that this thread was started, good idea.
            Custom and semi-custom washable wool felt saddle pads!


            • #26
              If you don't already have one, get a prescription for one of the triptans (Imitrex, etc) and take one THE VERY MOMENT you suspect you might be getting a migraine. You will be able to go on with your day for the most part, rather than being stuck in bed (or wishing you were dead!)

              You have my sympathies. I've had awful problems with migraines for years.


              • #27
                Mine have been under control for the last year (now I've just jinxed myself).

                Cymbalta has been good for me. But, I'm also getting more sleep (thanks, other drugs), losing some stressors, and the barometer's been friendly.

                I've tried lots of other things, as have so many people. It's certainly a frustrating thing to sort out.
                ~ Horse Box Lovers Clique ~


                • #28
                  I get them from artificial sweetener, most notably the stuff in the pink packets. They're horrid!
                  It's a small world -- unless you gotta walk home.


                  • #29
                    Never leave home without either Zomig, Imitrex or another prescription migraine pill. Tylenol Migraine and other OTC meds are just tylenol or excedrin with added caffeine....I have been totally sidelined with migraine issues before getting the right meds, and it is so good to know when I feel one coming on that I can stop it in its tracks. Neither of the above mentioned meds knock you out but they sure knock out the pain. There is truly nothing worse than a migraine.
                    Little Star Chihuahua Rescue
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                    • #30
                      Im on epival, but thats starting to not work and im 2 pills from max doesse. I dont leave home without tylenol 1s( tylenol with 8mg codiene) but preferable t3s
                      Beyond the Ring-para dressage, training, coaching

                      Proud Team Four Star Minion! Renegade for Life!


                      • #31
                        jconners: I had that same issue when I was pregnant with my daughter. I have not had it reoccur -not that I have known about. The spinal tap created a hole that had to be patched but everything was OK, my daughter is 14 now. I never really understood it, but it was the same as your experience.


                        • #32
                          Originally posted by stolen virtue View Post
                          jconners: I had that same issue when I was pregnant with my daughter. I have not had it reoccur -not that I have known about. The spinal tap created a hole that had to be patched but everything was OK, my daughter is 14 now. I never really understood it, but it was the same as your experience.
                          Glad you never had yours come back. I have to manage mine with a diruetic once daily. We have tried weening myself off of it, but the pain returns in about 2 weeks. Its frustrating that I will have to stay on this med the rest of my life.

                          I also went to my chiro yesterday. I told him about the vibration in my skull and he ordered x-rays of my neck and did a major adjustment on my spinal cord. He thinks that is due to something wrong in my neck. We will see...


                          • #33
                            Migraine sufferers probably know about this already, but alcohol and cigarette smoke are common triggers.


                            • #34
                              I get menstrual migraines which are obviously hormone related. Maxalt worked great for me, but what has kept them away for now, has been 200 mg. of Prometrium every night. So far, I haven't even had a period with it, but I am also still breastfeeding. I also take Zoloft which I think helps cut down on the stress headaches.

                              I still get sinus headaches a lot, but I am limited with what I can take, while breastfeeding, but 800 mg. Of Advil and a Mucanex helps.

                              I still don't get how the OTC Migraine meds get sold, since as another poster said, all they have different is caffeine, and are usually more $$$.
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                              • #35
                                I did it in reverse from most women--I never had a migraine until after menopause. Mine are not as God-awful as many folks have, but still stop me in my tracks. I am lucky that I always get an aura about 30 minutes before the pain hits & that gives me warning. Earlier this year, I read in AARP NL that ibuprofen can help. So I tried it & it does help a lot. Whatever prescription med I tried some years ago did nothing. I still feel a vague sickness & sensitivity to light & sounds but the pain is dulled down.
                                Mine seem to be triggered by internal issues. I've learned that my migraines are nature's way to get me to pay attention to something in my life that I need to do better at, to stop ignoring my emotions & look deep. Migraines have made me realize things about my self that I would have tried to ignore otherwise. It is interesting that so many of you here have mentioned stress as a causative agent.
                                Interesting thread. There are probably a bunch of us w/migraines and we have learned to adjust our lives.
                                There is no such thing as "bad" horsemanship or "good" horsemanship. There is simply Horsemanship or the absence thereof.



                                • #36
                                  Strangely migraines post menopause aren't that uncommon. Mine actually stopped at puberty and was told they would restart after menopause. And they always went on a cycle every four weeks. Sigh.
                                  Riding: the gentle art of keeping the horse between yourself and the ground.


                                  • #37
                                    I started on Effexor for my depression and suddenly became extremely light sensitive and got awful, awful migraines. I don't know wether the migraines are a side effect of the drug itself, or if it's just simply the beginning of my life with migraines. It's hard to tell because I'm 16. I feel like there is also a connection with if I am late to take my meds, or if I miss a day, I get a migraine. (I know, I really shouldn't skip days/be late, but I have a pill phobia from a suicide attempt when I was 14 and even the thought of pills make me gag... blech. ) But I talked to my doctor about it and she said it was more likely to be hormone related than being at all related to my meds.

                                    I've been on Effexor for about 8 months now, and have previously been on Zoloft and Prozac and didn't experience migraines... If I can feel a migraine coming on I will take an Advil liqu-gel and if I catch it early enough it will prevent the migraine from developing. If I get a full-blown migraine, I take some prescription meds... I forget what they are called though.

                                    On a sidenote... Do people prone to migraines usually develop them in their teens, or is it just a random development? And has anyone noticed a relation between antidepressants and migraines?


                                    • Original Poster

                                      Wow, Fordtraktor, I feel for you! (and everyone...) I think the hormone component is quite common, so development, cessation, or some kind of change (increase/decrease) with major hormonal changes like puberty or menopause is often reported. Mine started well before puberty and have done nothing but get more frequent all my life...although I will say they are not as severe as they once were. Whereas once they were ALWAYS blinding, fall down, gouge my eyes events, now, although they're much more frequent, they're rarely ever that bad.

                                      And topomax is my daily med - only thing that's ever worked at all, of all the systemic meds, and only at a "dangerously" high dose. When I had to change neurologists, and got the crap one I've got now, he tried to wean me back to the dose that the literature supports there being no difference in, (in clinical efficacy) and the dose I'm on - except that that hadn't worked, and this did. Like, did he think that his colleague was a total fool who got her M.D. at K-Mart? She decided to just slap me on this dose, oh, well, for the fun of it? Why are 9 out of 10 M.D.'s jackasses who want to put their already beleagued patients through pointless exercises in futility? "Let's try it and see?" No, you rocket scientist, we DID try it - we tried that before we ever went to the higher dose. This guy MADE it through med school? I practically had to storm in with a Thompson submachine gun to ever get my meds back - and it's not like there's any hop in topomax.

                                      Morphine, now, back in the day, was helpful - although it put me straight to sleep. But I felt BEAUTIFUL when I woke up. But that was real deal morphine. This oxy crap gives me a huge WHOPPING headache. I had some of that for a shoulder injury and couldn't tolerate it at all. So the synthetic crap is...crap. I'm really liking the word crap tonight.
                                      Blog: The Continuing Adventures of an (ahem) Mature Re-Rider without a Trust Fund...but, finally, A Farm of Her Own!!


                                      • #39
                                        There is a tie-in between migraines for which no heredity, neurology, allergy or montly cycle problem can be found, and psychological issues relating to childhood in an abusive situation, and later life stressful situations related to that. Those migraines don't respond much to standard migraine treatment.

                                        When the stress stops the headaches go away. If it starts up again, so do the headaches.

                                        Probably this doesn't apply to anyone here but it is good information. I had no idea.


                                        • Original Poster

                                          Oh, and Xpression, DEFINITELY tell your depression doc about your migraines. I have never paid any real attention to it, but especially if you take migraine meds, some of them can interact with with depression meds, very badly. Even if you just self-medicate with herbal remedies. I don't know what the connection is, but whatever (chemical) the migraine remedy works on, I'm guessing that somehow is involved in or acted on by the treatment drug as well. Your treatment drug triggering HA pain strengthens this suggestion of a link, and if nothing else may have implications for how its treatment is working. And besides, who needs to deal with frackin' headaches if they're already depressed!!!
                                          Blog: The Continuing Adventures of an (ahem) Mature Re-Rider without a Trust Fund...but, finally, A Farm of Her Own!!