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My wife’s migraines

Hi, my name is Jamie and I am the husband to a woman who suffers migraines. My wife is 34 years old and has been dealing with migraines since her early twenties. When we first met her migraines happened between 2-3 days a week. We’ve been married going on seven years and the migraines have only gotten worse. She now has a migraine every day starting in the late afternoon all the way until bedtime.

She graduated from college with a masters in education and started her career as a kindergarten teacher in Seattle. At that time we got pregnant and the migraines disappeared for the first time since I’ve know her. Shortly after our son was born the migraines returned. She was able to find a good job as ‘director of education’ at a non-profit pre-school where she championed on and worked through her continually growing migraines. She then moved on to another school where she was quickly let go because of differences with some of the staff. I know now that she was just in so much pain and so out of it because of all of medications, that she just couldn’t perform in the way the school demanded. Its been 6 months now since that happened and she is un-employeed at home in pain just trying to get through each day.


Its really sad to see this amazing person who was once so full of life and energy be debilitated by this mysterious condition. We went to the doctor today for the first time in a year, and all he could offer was upping her dose of topirimate. This is a drug that makes her so groggy and irritable, I was disheartened by his lack of empathy and was hoping for more problem solving than he provided.

I feel like my wife has been on the same medications for awhile now with no results and it is very frustrating. I’m familiar with the rebound effects of migraine medications and feel like my wife is trapped in that cycle. Can anyone offer some advice or personal experience with breaking that cycle and starting a new relationship with migraine meds?

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Comments

  • Kristin
    4 years ago

    Hi Jamie,

    Thank you for writing, and being such a wonderful sympathetic husband. As you can see, there are many of us who are in her shoes, or going through what you are!

    I am in her shoes, unfortunately, but my story is very similar. I am 33, and have had migraines for appx 8+ years. During both my pregnancies my migraines went completely away, however came right back right after my babies were born/quit breast feeding. I was started on specific birth control to help with my hormone levels to see if this would help as my migraines were definitely worse during my menstrual cycles- has she done this or discussed this with her PCP/OB? There are hormones that might help, such as what I’m taking (Seasonique, where you have hormones that only allow a period once every 3 months, or some that are longer than that). You might look in to this!

    I agree with other comments that you should also seek another opinion, and don’t stop until you get her help. I understand about having horrible migraines that have affected jobs… At my prior job, I was told I would be fired, or I could “quit on my own” which of course I did, and I am now in a different job, however it required uprooting my family and moving 5+ hours away from extended family, which has been difficult and stressful (and difficult if you have severe migraines!). But keep being a champion for her, and find a physician that will help her. There are a lot of medications out there other than topamax that may work for her, without side effects, and other things such as Botox, that may work for her as well. She just needs to find someone who specializes in migraine medicine to help her… this is coming from someone who practices medicine as well!

    Best of luck to you!

    Kristin

  • Chris
    4 years ago

    First of all, let me say I can empathized with you and your wife. My migraines started while I was a child. Eight years old is the first one that I recall. I am now in my mid-60’s. Just like your wife, I lost a job because of the medications affecting me. Also, I was only free of migraines while I was in the second and third trimesters of pregnancy and while breast feeding.

    Let me offer this. If your wife has only seen one doctor in the past year and this doctor says the only thing to do is to up the dose of toprimate, get a new doctor! I highly recommend the Migraine and Head Pain Institute of Ann Arbor, MI. The founder and renowned migraine specialist Dr.Joel Saper, has put together a comprehensive migraine treatment program. I have been going to MHNI for at least 20 years. MHNI gets folks from all over the world.

    Know that there is no known cause and no known cure for migraine. There are many treatment options available.Also, do not look for a quick ‘fix’ because there is none. There are building blocks ( my term) of treatment. One med might help 30%, another treatment or med may add another 10% of aid. Each builds on the other and may work for a time and then need to be changed.

    With treatment at MHNI, your wife can anticipate a hospitalization in the Inpatient Head Pain Unit at Chelsea Community Hospital while the health care providers from physicians, nutritionists,physical therapy and a whole host of others, will work together to try to put together a treatment program for her. While there, she will be treated to help break the migraine cycle she is probably on ( the doctors will help determine that).

    I have had three HPU admissions in 14 years. This last one ended on Oct. 27, 2014, and I have been migraine free for the longest time that I can recall.

    The trips to MHNI are inconvenient and can be costly because of travel but you won’t find a better place to go and if it means your wife gets her life back or even start having less frequent migraines, I think you will find the costs worth it for the health of your whole family.

    Good luck and I will keep your family in my prayers.

  • sarcozona
    4 years ago

    It took awhile, but my doctors and I figured out a way to make topamax work for me. Topamax was helping my migraines – it caused a decrease in their intensity. However, it also made me sleep all the time, made me depressed, and I couldn’t focus. Since it was helping my migraines, we decided to treat the side effects. Wellbutrin turned out to be the ticket for me – in addition to being an anti-depressant, it can help with focus and it’s a bit of a stimulant, so I now sleep a normal amount.

    For me, topamax was making a measurable difference for my migraines, but having bad effects. My doctors and I were able to compensate for the bad effects. Migraines are still an enormous problem in my life, but I’ll take any improvement I can get.

    I wish you and your wife the very best.

  • Pete
    4 years ago

    Jamie- I am the other side of the story, and it is my wife who has to endure. It is very important that both you and your wife find someone/group where you can talk. I live in the boonies, and I am fortunate to have a good friend who has followed me down the path to Hell. Each of you has different needs, and I know how it kills my wife to watch me go through these, particularly the ‘suicide clusters’; I can’t image how much harder it must be for a man to be helpless in the face of his wife’s agony [ladies- I mean no sloughing off of the suffering of you with mates with migraines- I am simply referring to the reality that most of us were raised in, and how those expectations- however antediluvian- can effect us.].
    The other comments are spot-on; I would add to keep trying different specialists until she finds one that “fits”- it makes all the difference; also, don’t rule out alternatives. Besides the meds, I use self-hypnosis to get to sleep every night.
    In particular as to your wife, in my many sojourns/experiments one was to test oral DHE on me, as the Ohio State U. pain control clinic was having an 85% success rate for women with hormonal headaches- this was many years ago, FYI. She should join multiple headache/medical sites to keep up on what’s new- the US “press” does a horrible job; the BBC usually reports American findings anywhere from days to weeks ahead of here. I also like Doc Guide and Science Daily for info. KEEP PUSHING for help with the headaches; as a former legal beagle, I used to tell my clients that that those with the best results were those that were the most active in their own care.
    I wish both of you well, and feel free to contact me if you have any questions that you think I may be able to answer. I’ve battled them for 28 years, been pretty much everywhere. Good luck, and take care of yourself (think of the airline ‘rap’: put on your own oxygen mask before those of others.) as well as you wife. Be sure to often say how much that you love her, because these evil &*^^& leave us doubting our self-worth, and the love of others. Hang in there.
    Pete

  • donnagarden
    4 years ago

    Your wife needs to see a neurologist who specializes in headaches. There are several clinics and research centers that are well regarded in the field such as the Diamond Clinic and MHNI in Ann Arbor, MI. Do some research in your area to find the best migraine specialist.
    A word of warning: When a migraineur takes meds every day for headaches, she gets MOH (medication overuse headaches. This becomes a cycle that can lead to chronic migraines.
    Also, is your wife aware of all of her triggers like food, weather light, sound and smells? It’sa good idea to keep a headache and food journal to help identify those triigers. Good luck in your search for relief. There are many of us who belong to migraine groups on social media where you can get some excellent info.

  • Soteria
    4 years ago

    Hi Jamie – I, too, appreciate the support you are giving your wife in this situation. As a migraineur it really helps to have someone on your side when going through this. Migraines are so misunderstood by most of the conventional medical community and few know how to deal with them. ‘Throwing meds’ at the situation is generally all they can offer. I have had migraines since I was about 5 – they were hormonally driven most of my life (am now 58) and I only experienced them once or twice a month, generally for about 9 hours an episode. Then after menopause, they kicked in big time and I was getting them every day. For the past 5 years it’s been a total nightmare- dozens of different doctors, different meds, different side effects, days of missed work, missed social events, dashed hopes and indescribable pain. A couple of years ago, I started getting 24-48 hours of vomiting with some of the really bad ones, which necessitates a visit to the ER. (Where they usually tell me I have a virus…) I take immutrex which does sometime abort the migraine when taken in the 10-15 minute window at the start of the migraine, but not always. Have been to neurologists, gastroenterologists, naturopaths, general practitioners, chiropractors etc etc ect. Each seemed to be shooting in the dark with another med they wanted me to try. I scoured the internet message boards and websites for anything that helped others. Then about a month ago, I tried a new general practitioner who suggested I try Riboflavin as it is proving to be successful as a preventative. Having tried the natural remedies (which I lean toward anyway) Feverfew, Butterbur, Magnesium without any success, I was skeptical. But 45 days of daily taking 400 mgs of Riboflavin later and I have had only ONE migraine. One. And literally, the horrible no-energy, walking-through-water alwys feeling crappy feeling I had for the past few years was gone THE DAY AFTER I STARTED TAKING THE RIBOFLAVIN. If this had not happened to me personally, I doubt I would have believed it. So my point in saying all this is to give you and your wife hope. I had come to accept the fact that I was going to have to spend the rest of my life in this hell and that is now not going to be the case. There IS a cure out there for your wife, and while it may not be the Riboflavin that works for her, something will. We migraineurs are not getting migraines because we’re deficient in Immutrex or Topimax – there’s some other imbalance in the body, and I really believe that if you keep looking you will discover it. If you had told me that 6 months ago, I’d have dismissed it but now it’s my reality and I’m thanking God. You really need to be your own health advocate and listen to your own intuition, because the lack of info on migraines among health professionals is astounding. I agree with Melissa who said that they may be related to you wife’s hormone levels as they subsided with pregnancy. Some women really find relief with the bio-identical hormones. But whatever the cause, there really is a cure out there and you just need to press on until you find it.

  • HS
    4 years ago

    Hi Jamie,
    Having battled chronic migraine for over 30 years, what I can tell you is that on the health care front things have gotten much better over the years. You did not mention if your wife’s physician is a headache specialist. If not you may want to find one. The research and treatment options for migraine progress much faster now so having a Dr. specializing in the treatment of migraine will help. More importantly keep being an advocate for her. When she is busy dealing with the pain of migraine she may not always have the energy to be the best advocate for herself.

  • RCole
    4 years ago

    Hi Jamie,
    I have been dealing with Migraines for over 10 years, and I too live in Seattle. When I was first diagnosed I was seeing a provider, who in hind sight, was not the best for me. I was told that I could keep upping the medications, or add others to my regimen, which all just made me feel worse, rarely better. I was never told how long to wait for one to work, or that at times I was taking nearly double the maximum recommended dose for migraines (at the recommended doses by my doc, mind you). I was missing work, was accused of coming to work high or drunk, neither of which was true, it was just the side effects of the meds.

    I eventually found a new doctor and within 3-6 months my life was drastically different. I was on all new medications, was able to work nearly every day, and didn’t feel drugged all the time. The last 2-3 years I can count the number of days of work I have missed due to migraines due to migraines. My advice to you and your wife is to look into other providers in the area. I am currently seeing Dr. Mary Reif, at Minor and James, if that helps.

    Best of luck!

  • migrainestl
    4 years ago

    Hi Jamie,

    First of all – kudos to you for being such a supportive husband & championing your wife’s illness. My husband’s support means everything so I’m sure you are a lifesaver in what sometimes seems like a sea of darkness for her.

    Your wife’s story seems a lot like mine. Finding a good Doctor you feel comfortable with is very important. Search for Headache Specialists or a Headache Clinic near your home. I know sometimes it seems like we try everything to no avail, but there are always options & it’s important to not give up. Katie Golden gave excellent advice/resources for finding a good Doc in her comment.

    I’ve joined a few support groups on FB to help gather info & find out what’s going on in the migraine world, but you have to take a lot of it w/ a grain of salt & don’t read every post or it can be too much/overwhelming/debbie downer! Reading Blogs like migraine.com or other headache blogs has also been helpful to me. In my case, I like knowing I’m not alone & researching what others have tried has helped me learn a lot about the options out there. It’s important to be your own advocate & work WITH your Dr, not just ride on their coattails.

    Definitely ask your Doctor & don’t go by what I’m saying, but generally you should know w/in a few months or even less if a drug is working for you. So if you don’t see results, definitely discuss w/ your Dr how to stop taking a current med & what others they suggest or you have learned about by your own research.

    Rebound is such a touchy subject in the migraine world. It def exists and some find they do so much better once they’re weaned from all drugs. Yet, others believe firmly that w/o certain drugs they wouldn’t function. Talk to your Doctor, research as much as possible & try to do what works best for you & your family.

    I wish you the best & hope you’re able to find a great Dr and a solution that works for your wife & family!

  • a303101
    4 years ago

    I have to reschedule my apt. At the mayo clinic,.. So i am taking my self off Topiramate cuss all the bad side effects. I had a day when i went to the clinic cuss the everthing i put in said call 911 and they say why are u here? And pertty much wouldn’t help me cuss i have a neurologist. That im seeing by chance cuss i went their For Carpel tunnel emg test. And he is only good at botox and has not done any other test at all . that’s why im gong to the mayo clinic.. For help im also 34yrs old 35 on sun , had mirgraines for 6yrs now. And worried i may have hit my head to hard this summer or shouldn’t be on birth control for 19yrs or maybe cancer, or maybe just to much or less if vit? But Topiramate with any other test? At all. Then im so sick, i quit eating and seeing trails and arura’s i never had before, diarrhea before i even finished what i was eating. I had to quit riding motorcycle last mo of summer to work. I thought i was going die. Gave it 3 to 4 mo. I lost 30lbs and i adhd so hard to focus allready. Id like to help if i can. Switching from amitriptyline to nortriptyline for sleeping has helped with the tension that then i didn’t know was cuss if my migraines…

  • Melissa Ferrell
    4 years ago

    Hi Jamie,

    First, let me say that I am so sorry for your wife – I don’t wish this kind of pain on anyone.

    My migraines began almost 9 years ago, and have progressively gotten worse, to the point of almost 24/7, so I completely understand that aspect of your wife’s migraines.

    I am NOT a doctor, however, it sounds to me like your wife’s migraines could very well be hormone-related, since they subsided with her pregnancy. Have any of the doctors she has seen run any hormone blood work? If not, maybe that is something that she could consider asking for from her ob/gyn. They will know the “normal” levels of those hormones. And, if they are lacking, there are “natural and safer alternatives” called bio-identical hormones, instead of the standard, dangerous, hormone-replacement therapies (HRT’s), especially if she has a family history of breast cancer.

    Something else that I just learned about myself that I will be trying as soon as my order comes in, is an iodine supplement. Iodine, from my research, is responsible for T3 and T4 production, which are other hormones, produced by the thyroid. I have had my thyroid tested and it is “normal range” however, my T3 and T4 numbers were off significantly.

    I’ve also just started taking a multi-vitamin and an extra vitamin D, as I have read countless problems, including migraines that vitamin deficiencies have caused, and well, I think most people probably don’t get a sufficient amount of vitamins from food alone. – It’s only been about 4-5 days since I started that regimen so I can’t say with any certainty that it has helped, but I THINK that it has. – If your wife is anything like me, she is willing to try just about anything at this point, and the iodine, D and multi-vitamins aren’t going to cause any harm that I am aware of, or I wouldn’t be trying them myself.

    Best of luck to her and to you,
    Melissa

  • Katie M. Golden moderator
    4 years ago

    Jamie,
    I really appreciate that you are doing everything you can to help your wife. My boyfriend is just as involved in my care as you are and that is a blessing. I hope I can help you with a few ideas.

    What type of doctor is she seeing? GP, neuro? The best type of doctor for her to see is a Headache Specialist. This type of neuro has specific training in the over 300 headache disorders and provides the best chance of a high level of care. Here’s some info on Headaches Specialists on how to find one:
    http://migraine.com/blog/how-are-migraine-specialists-different/

    I always believe that if you are not happy with your doctor, find another one. As for the topirimate, it can be very difficult to get off. It does seem that your wife is experiencing quite a few side effects that may get worse as the dosage is increased. If she finds the higher dose intolerable she should discuss coming down slowly with her doc. Usually, a decrease of 25mg per week is advised (but ask the doc!).

    What other meds is she on or has she tried? Another benefit of having a Headache Specialist is that they are aware of a lot more medication options. Unfortunately, it can take a lot of trial and error before finding what works for her. This article is a great resource for many different types of meds and other treatments that she can explore.
    http://migraine.com/migraine-treatment/

    If she is on an abortive med like Imitrex and it doesn’t seem to be helping, a med called DHE can be substituted, however it can cause rebound headaches too. But some people respond better to it than triptans.

    When I’ve been in a bad cycle of Migraines, I’ve gone to the ER to get a cocktail of meds that can include an anti-nausea like Zofran, an anti-inflammatory like Toradol, DHE, and magnesium. But each person will respond differently. It also helps to have a doctor who calls ahead to the ER to give the orders.

    These are just a few ideas and I’m NOT a doctor. Just things I’ve experienced. Let me know if you have questions and I’d be happy to help brainstorm more.
    -Katie
    Migraine.com Moderator

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