What to do when there are no answers?

Dear Migraine.com community,

I am not a stranger to migraines, but today I feel lost. I just don’t know what to do. I have come to a point in this journey where I’ve never been before. A crossroads. The end of a rope is the better idiom maybe.

I am 40 years old. I began having migraines, episodic, in my late teens, and they became chronic at some point in my early twenties. I spent a large amount of time, energy, and expense trying to find a solution. Doctors, medications, scans, tests, chiropractic, yoga, acupuncture, more doctors, more medications, massage, vitamins, supplements, etc. You’ve all heard that story before. It could practically be your story.

Eventually, when I was about 28 or 29, juuuussssst the right combination of medication (Topamax, which wasn’t yet being used regularly for migraine treatment), healthy lifestyle, magic fairy dust, and wishes on stars came together and I was feeling better than I had felt in years. Life was about as good as it gets for a chronic migraineur (and I’m not even sure I had the proper diagnosis yet at that time).

At 31 I had my first pregnancy. I had worried about going off Topamax, but it turned out that my body didn’t need it when I was growing babies. Or when I was nursing them. I stopped nursing our first son at 15 months and we conceived our second son when the first was 24 months old. The migraines had made an appearance in those months in between, but they were only episodic. Again during pregnancy I had no problem. I nursed the second until he was 18 months, which took us until the end of April 2011.

Several very stressful life events and multiple months later, my migraines were chronic again. My PCP prescribed Topamax again, but it didn’t work as it had the first time around. We tried other meds and other treatments, but within a year I was seeing a headache specialist who was new to our area.

I was so excited. A headache specialist! My very own headache specialist, and I didn’t have to drive nearly three hours -–one way– to see him! And he communicated with me directly via email. And he made me feel normal. My PCP had really tried, but she had emptied her extensive bag of tricks. This doctor seemed to feel like there was so much more to try! And so that’s what we did. We started trying. Meds and supplements. Different meds. Cephaly. Botox. We were trying.

But here’s the thing. My guy? My headache guy? He left. After two and a half years, the hospital called me one day last April, midway between one appointment and the next, and told me that we had to cancel. He was moving on. To bigger and better. To Florida, in fact, rather than cold, dreary, and snowy northeast PA. Smart man. But where did that leave me? Doctor-less. Botox-less. Feeling quite defeated. And, to be honest? A little abandoned.

I called that same day to make an appointment at the Thomas Jefferson Headache Clinic in Philadelphia. I had to wait four months, until the end of August. So I waited. I’ve now had two appointments there so far, resuming Botox during the second appointment.

In the meantime, my migraines are worse than they have ever been. I honestly do not know what to do. I am married, and we have two children, now ages 8 and 6. I am the primary wage earner in our household. It is my job that provides the health insurance to all four of us. Our older son has life threatening food allergies to milk and eggs. Our younger son has Type One (insulin dependent) Diabetes. He is currently in half-day afternoon kindergarten. My husband works part time in the evenings, and is home with our son during the day. He is a wonderful, supportive spouse. A genuine partner in the sharing of household and child raising responsibilities, but it is still extremely difficult to work all day and then take care of the kids alone at night while he is at work.

My career is challenging and demanding. I work in a profession that has strict, state-mandated timelines. We are monitored for compliance by the state every six years. Because this is the year that we are being monitored, we had to provide documentation of certain things last year, and my health prohibited me from getting some of the necessary things done within the mandated timelines. This has created problems for me at work. Additionally, I have a new boss, who does not know me from “before,” when I was well.

I am in severe pain (I also have other symptoms, such as fatigue, phonophobia, difficulty concentrating, and neck pain, but the horrible pain in my head is almost always my worst complaint), and yet I have to do my job and do it well. I genuinely do not know what to do. I don’t want my job to be in jeopardy. If I don’t come to work, the work does not get done. No one fills in for me. No one else does the work. There’s only me. I am the only one here with the required degree and certification. If I’m not here, things snowball quickly.

I then have to take care of my children when I get home from work. And I want to spend time with them. I want to enjoy them. They are growing entirely too fast and I don’t want to miss it. Additionally, they have medical conditions of their own which really require me to be present in the moment. Mistakes cannot be made with regard to exposure to food allergens or with regard to insulin dosages. Mistakes in either of those things can quite literally be fatal.

For months I have been having daily migraines, most of them moderate or severe. I am advised to medicate only twice per week. And even that isn’t guaranteed to stop the pain. Even if it stops the pain, I still usually do not feel well.

I am in contact with my doctor’s office. I called two weeks ago, and was advised to increase one of my preventative medications by 25 mg, and to call them if it is not effective. Also was advised to add B12 (Riboflavin) because it was one that I haven’t tried. I left a message yesterday to indicate the increase did not work and to ask if I should increase by another 25.

But what am I supposed to do in the meantime? And on the five other days of the week? The days that I can’t medicate? How is a person supposed to work? Or to live a life? Take care of family responsibilities? I feel lost. What do people do when there is nothing left to do? How do you continue to survive? I just don’t know what to do anymore. I just can’t sustain things like this much longer. I don’t think I can hold it all together anymore, yet there doesn’t seem to be any alternative.

Wow…it took much longer than I expected to explain everything, and I still feel like I left so much out. I don’t think I’m actually expecting any answers to the “what am I supposed to do” question. I’m just grateful that there’s a place to come where people understand. Thanks so much for listening.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (30)
  • T-Lee
    3 years ago

    Hi I have had migraines since I was 10 years ago. I have worked as a nurse all my life and have struggled with an absentee problem due to migraines 2 to 3 times a month Plus daily chronic migraines. I have had some understanding bosses and ended up with my last employer not supporting my migraines whatsoever. The entire staff I worked with turned against me due to my migraine frequency. How horrible was that? I ended up quitting after 23 years of struggling with this illness and I am now on disability for chronic migraines and Lyme Disease.

    My entire life improved with the decrease of stress from not having to work under pressure plus finding a good PAIN MANAGEMENT CLINIC. If you have not done so, I would highly suggest you find a good Pain Management doctor. For my chronic daily pain, I am on an extended release pain medication that last 24 hours. This keeps the pain level controlled without the usual up-and-down of pain you get requiring regular oral pain medication one has to take every 4-6 hours.

    Good luck to you and always keep trying to share your feelings with others whom understand your plight. This has helped me cope most of all throughout this terrible ordeal.

  • Robert Chevalier
    3 years ago

    Hello Jennifer,

    I have to agree with Susan L., going on disability is something you can try. It doesn’t have to be permanent, State disability allows you to try it for a few months. Last year I was at the same place you are now, and decided to go on disability for 3 months. Long enough to recharge my batteries, and short enough that I wouldn’t lose my job. Frankly, it didn’t make my headaches better, but it did give me some new perspective on my life. We all need a break, or some change in our life, to give us time to find the answer to what to do next, to find that door in the wall in front of us.

  • Susan L
    3 years ago

    Hi Jennifer,
    I feel so very badly for how much physical pain you’re in, but even more so for the psychological pain you’re enduring. I have been a migraineur since I was 15, and from my late 20’s thru my 30’s, I was a single working mom with chronic daily migraine. All I had back then was Ergotamine, Darvocet and one other pain killer. I knew about rebound headaches, so I had to limit even those, but how I ever managed to survive those years is a mystery to me. I fought thru agonizing pain daily. Suicide was always on my mind, but I wouldn’t leave my children to their father. I’m telling you this because I think you should consider going on Medical Disability very, very serious consideration. It would mean a cut in income, but migraine disease is extremely dibilitating. Unfortunately, migraines beget more migraines. You are likely to struggle with them for the rest of your life. I wish I had gone on Disability back then. My life, my job , my parenting, my friendships – every aspect of my life – just as you describe – suffered…some of it beyond repair. And the physical pain was frequently unbearable. I am still struggling , and the last 4 years have slipped back into Chronic Daily Migraine, and I am now 72, married to the most incredible man who understands and supports my journey, and I fight along with all the “younguns” I meet here. But at least I have a lot of newer preventives, abortives, managing meds, supplements, topicals, Botox, etc. to boost my moral, even though I still suffer blistering pain too much of the time. But you need a break before your world comes tumbling down, hon. Please give Disability serious consideration. Because, after all, you are. And IT ISNT YOUR FAULT AND YOU CANT HELP IT. IT SIMPLY HAPPENED TO YOU & IT SUCKS! This is a disease.

  • Deborah J.
    3 years ago

    Hi Jennifer, wow, I’m so sorry this is happening to you. I’ve been home again with another – on a 3 day run. I’m on prevention meds and have abortives but when the abortives don’t work I can take Vistaril and Soma – together three times a day for three days. Sometimes I can take it just at night and when I wake up it is gone. They do make you sleepy though. If that does not work they call in (the neurologist) dexamethasone which I can take (steroid). This I call an emergency med. I used to have to go to the ER to get a drip all the time. Now this works. I also use a cold pack on my head. It does not seem to be getting better though, may try Botox. I’m just glad I don’t have to go to the ER all the time to cut the pattern. I’ve been diagnosed with chronic migraines since 2011. I do wish you well. Know that you are not alone. Deborah

  • whall7
    3 years ago

    Dear Jennifer,
    Thank you for your post. I could have written this. The similarities are striking! I’m 48 and suffered from migraines and chronic daily headache since the age of 15. Though I was saddened to think that someone else is suffering to a similar extent, I also felt some validation that I am not alone and that migraneurs all suffer similar scenarios. The fears of juggling family, work and the constant fear of the next migraine and how it will affect plans is life altering. Thanks again for sharing your story and allowing others to feel that we are not alone!

  • sarah
    3 years ago

    I am so, so sorry to hear you suffering like that. I am 48 yrs old and can relate to everything you just said. I don’t know your husband’s skill set, but he should switch places with you. He should be the primary wage earner and providing the health insurance. You cannot continue to juggle all that you do. I remember feeling like I had plates spinning on sticks to the left and right of me, and me running back and forth trying to keep them all spinning. Keeping things the same will wear you down physically, mentally and emotionally. Try filing for disability so you can supplement your lost income. This will take years to get through and an attorney. Perhaps find one who does probono work. In the mean time, find ways to bring in income that will be flexible enough to work around the migraine attacks such as tutoring, selling crafts on Etsy, editing work, etc that do not have “hard” due dates.

  • ShannonAW
    3 years ago

    Hi Jennifer, you said it right on spot! That’s been 1 of my pet-peeves for the last 7 years and no-one with alphabet letters after their names seems to really understand the issue! I have come to feel that as soon as we leave the clinic, that’s the end of the issue for the providers. They don’t have to live this life sentence of disabling pain that is excruciating every s-i-n-g-le second of every moment – period. It’s not that they’re trying to be cruel; it’s just the nature of the ‘beast’, so to speak. However it is not helpful to us. We leave the clinic and have to carry on the rest of the day as best as we possibly can; deal with this horrible monster alone and without tools, weapons or help. It’s exhausting and demoralizing. I’m often surprised that any medical provider is baffled when patients in these circumstances, left without adequate treatment/interventions, turns to other means of self-medicating in order to keep up with daily life. What else are we to do, pretend we’re not being ravaged by this terror? They get to leave the clinic & go on with their lives, not giving our pain & circumstances another thought. Not to say that they don’t have their own lives & issues, but that doesn’t help us.
    I have read hundreds of books, articles, medical journals, internet sites and pamphlets. They all say 1 very important thing; “we need to be our own best advocat…be well read about our conditions…be prepared for our appointment, with any questions, thoughts, concerns & ideas written down to stay on track”. I don’t know about you, but I’ve had several Specialists who were not pleased with that. So, in much of my reading, I’ve read that patients with chronic pain, especially chronic daily Migraine Disease, should have a 3 tier treatment plan on place. This plan consists of the daily preventative medication, an abortive med for a flare up and a specific pain medication. The order and/or usage of the abortive and the pain medication have to be determined via cooperative trial between the patient and the provider. However, I can’t get any provider to manage my disease with this formula. Why? Like you said, Jennifer, what do we do when there are no answers? Several items that propose that she the established medication routine is not enough and the patient is suffering break-thru pain, the patient’s Migraine Disease managing provider sets up an agreement with the local ER for the administration of a specific acute/abortive ‘cocktail’ to be given to the patient who would be observed for a physician agreed upon amount of time in the ER. The hope here is that this cocktail will stop the break-thru & the patient will be able to return to their daily routine. Again, providers and ER departments often don’t seem to be able to make this a viable practice. Once again, what does the patient in horrific pain (who is not a drug seeker) do when their providers have not or cannot give us any answer? I wonder if there are any medical providers who have studied what happens to a human who is constantly subjected to horrific, unrelenting pain and suffering without support and relief?

  • whall7
    3 years ago

    Shannon, I have found that in general unless you find a provider who experiences migraines personally they do not fully understand the magnitude of the impact migraines have on our daily lives. ER providers think we are drug seekers. I will not seek treatment in an ER for migraines. My daughter(migraine sufferer) and I have both experienced being stereotyped and treated unfairly. Too many providers are also afraid of prescribing pain pills and many feel it is inappropriate treatment for migraines. I had a physician once say that he is obligated to treat a patient with diabetes and he should have that same obligation to treat a patients pain. Unfortunately pain is so subjective, many won’t treat pain appropriately. I wish you luck in finding a provider who will work with you to find a treatment plan that works for you.

  • Jojiieme
    3 years ago

    Reading this, the replies, and other pages on this site, I’m quite moved. I don’t live in the USA so although my experience tallies with many of yours, the medications are known by different names and the medical system is a bit different.
    I’ve probably had chronic migraines most of my life, without knowing what was happening. I seem to experience pain, especially head pain, differently to other people. And it’s really hard to rate the pain I do feel on a 1-10 scale. But the other signs and symptoms? Disruptive as living in an alternate universe!
    It doesn’t help that now I’m almost 60, I have a partially paralysed face (from a car accident 30yrs ago), am allergic to most painkillers and have food chemical sensitivities too. Luckily for me caffeine isn’t a trigger (tested).
    So, what how do I manage my almost daily, multiple-day attacks? I’m on topiramate (50mg, morning and night). And verapamil (80mg, also twice a day). And nortriptylene (2 small tabs at night). Because ‘these help to smooth surges in the signalling between the cells’ in veins and muscles, is the way my specialist explained it. I don’t have a cardiac problem, I don’t have epilepsy or a psychosis but I do apparently have something awry in the way I process sodium, magnesium and calcium. This regime helps to smooth that out.
    Apparently it’s hereditary: my brother and some cousins have similar experiences. We compare notes.
    We’ve all found that vit Bs help (I was part of an Australian study).
    I also use some Feldenkrais movements to release pain and tension or to re-establish balance when some of the physical symptoms are too much to live with.
    And bless the inventors of those migraine patches!! I can usually grab a couple of hours’ sleep with one.
    I guess we all find a way to stay sane and centred. I wish everyone a less disrupted 2016!

  • Christi
    3 years ago

    I want to thank you for your story. I don’t feel so alone any more.

  • MissyP
    3 years ago

    Jennifer-thank you for writing this article. Although your story is heart-breaking, it’s actually nice to have validation that I am neither alone nor am I crazy. Like you I have a wonderful PCP and just as fantastic neurologist, but so many times have wondered how crazy I sound when trying to describe my latest bouts with severe and chronic migraines.

    My story differs as I have idiopathic intracranial hypertension, but at the end of the day, pain is pain regardless of the cause. I am humbled at all that you continue to accomplish even in the face of pain and though you may feel as though there are no answers, there is always hope. Formats such as this give us all the platform to vent but also gives others hope. I have gone down the same road as you, trying every supplement, eliminating things to determine cause and effect, and trying different treatments and medications. Just keep going. Your children and your hubby need you… Fortunately for us there are new drugs and treatments that come on the market all the time. Research is being compiled as we speak. Just take things one day at a time, one hour at a time if you need (many days this is how I cope). You are an inspiration to many and I pray that others continue to inspire you to find ways to battle this monster. Hang in there Jennifer. We are here and we are with you!
    -Missy P

  • Panda2015
    3 years ago

    Hi, Jennifer. Thank you so much for sharing your story. I’m sorry you’re dealing with this, and although I haven’t been in your shoes, I can relate to the migraine pain. I hope you find solutions, and in the meantime, this community is here to listen and help!

  • Maureen D.
    3 years ago

    Jennifer, your story is heartbreaking. I do actually have a suggestion that may help. Look for a professional organizer in your area. I am not saying that you are disorganized – quite the contrary, it seems. But, there may be ways to streamline your life so that you can focus your at-home time on your kids and your health. I hope you find a doctor who can truly help you.

  • Nina Rose
    3 years ago

    have you ever tried tinted glasses? I get my normal prescription tinted to the exact colour that makes my head ‘calm down’ if that makes sense? you know that feeling if someone else puts a gentle hand on your forehead and kind of over your eyebrows? its the same feeling of relief you get when you turn off the light at night except you can still see 😀 now, it didn’t solve my photophobia but i think it allowed my body to get there on its own and most importantly, it allowed me to leave my darkened bedroom. I was still in pain but not as bad as I was without them, and i kept gradually trying to lighten the tint..sometimes it worked, sometimes I had to go back to the darker pair again. my first pair were as dark as sunglasses and i wore overglasses on top! then I ditched the over glasses after about a month, but stayed with the really dark tint for over two years, then I went a tiny bit lighter, which was massive for me but nobody else noticed 😀 but then six months later I was able to make a big jump and everyone can actually see my eyes now 🙂 it was a combination of other things that helped too but I know if I tried to force myself now togo without them altogether I wwouldn’t last 20mins! The glasses just allowed me to keep living. they’re not very socially acceptable but I think most people are so much kinder when they can see that there’s something visibly wrong and that you’re still trying to live your life even though you’re sick. .its expensive but I never got rid of any of my glasses and i bought cheap frames online so I will always have them now if I get worse again….The colours that work are different for everyone..mine have light grey, greenish-aqua, & sky blue but it’s always trial & error every time so I have to make sure I’m happy before I leave the opticians every time:) hope this helps with your photophobia at least xxx

  • Alison
    3 years ago

    Hi,
    Where do you get your timted glasses from and how do you find out what colour tint is best for you? I would love to try these.

    Ali

  • 15lsvhe
    3 years ago

    Jennifer,
    I have been there almost exactly, with 2 kids, full time IT management position and chronic daily migraine. I have tremendous empathy for your pain, so sorry you are going through this. If the Botox is working for you, there is a treatment you may want to look into. It is surgery to remove the muscle or nerves in specific places that when inflamed trigger migraines. These are the same nerves that are ‘frozen’ by the Botox. The surgery was pioneered by the Cleveland Clinic and Dr. Jeffrey Janus is one of the original surgeons. I believe he is currently at the Ohio State University Hospital. You may want to look him up, read about the surgery and look for a referral to a qualified plastic surgeon who can perform it close to where you live. I had the surgery when Dr. Janus was in Dallas and it worked. I was completely migraine free for 2 years (what a blessing ) until I had an accident with a severe concussion and they came back. It’s a rare issue for his patients, most have excellent 5 to 10 year results. It may be worth looking into for you. Best of luck in fighting this debilitating condition!
    Laura

  • Alison
    3 years ago

    I had the surgery with a Doctor using the same method in Germany( I am in the U.K). It didn’t work at all for me but it did for others I met.

  • tbrundin
    3 years ago
  • Alison
    3 years ago

    Thanks so much for posting. This has given me hope for a possible improvement in the future. I can wait 4 years.

  • Holly
    3 years ago

    Thanks for sharing this, very encouraging. Hope it is out soon.

  • tbrundin
    3 years ago

    Hi Jennifer,
    Sorry to read your story; I have a similar problem
    I have seen something that might help you – at least it’s worth a try
    The upcoming CGRP-based Migraine Remedies that will (hopefully) be on the market in 2-3 years, are currently being tested in Clinical Trials. I would recommend you to investigate if this is something that you can enroll in
    I have attached a link to an article that describes what is being tested, by what company and what the results are – so far to this date
    Please have a look and see what you think
    It looks VERY promising, indeed
    Good luck!

    Kind regards,
    Tommy

  • Auemerald
    3 years ago

    I can’t make things better. What I can do is say I admire you for being able to do so much! There was a lot of good advice posted to you. My personal journey says that it’s a chronic condition just has periods of extreme flare ups. Oh and do not struggle with the same doctor for ages if things aren’t getting better, get a 2nd opinion or 12th. It can get better and it sounds like you have a new doctor that you are working with. Also it seems to be a 6 month wait to see if that medication or treatment plan is really working. If you smoke, quit.

  • Jennifer author
    3 years ago

    I appreciate the replies, suggestions, and encouragement everyone! Nancy, thanks for the ideas for supplements. I do already take Vitamin D, Magnesium, and CoQ10, which I’ve been taking for more than a year. For some reason I just wasn’t taking the Riboflavin with the Magnesium and CoQ10, so that was recommended to be added. (Maureen, my writing B12 rather than B2 was simply a typo. As you suggest, the migraines and the meds do indeed just make me a little dumb sometimes. Lol.) I am very careful to avoid medication overuse headaches. I medicate usually only two times per week (three on occasion), ten times monthly at maximum, including over-the-counter medications. Caffeine is another good thought, but I don’t drink coffee or caffeinated tea, or consume any other additional caffeine.

    Someday I’ll figure it out. As Hope and a Prayer said, we do always seem to keep finding something else to do, something else to try. I was just feeling uncharacteristically defeated the other day. I will keep trying things until I stumble upon what works again. There’s no other choice. 🙂 Good luck to all of you who are on a similar journey!

  • cbakerok
    3 years ago

    Jennifer, I am also very sorry and feel your pain. At 55 I have been dealing with Migraine at some level since the age of 12, and have had to work extremely hard the last 18 months to stay a productive citizen. I am so very fortunate that I work in an environment that is understanding and willing to work with me, or I would probably be at home on disability. I too have tried every form of solution including 4 daily medications, Botox treatments, meditation, and all the rest (acupuncture, chiropractic, etc.) without measurable relief. I was ready to give up even though I have a headache specialist, GYN doctor, and my fantastic GP all on my side helping as much as they can. Recently I have finally given in to adding a pain management specialist to my treatment team. It was suggested more than 2 years ago, but I kept thinking I could struggle through and someday one of the other treatments would work. This change, although I didn’t want it, has made a huge difference. It took the first couple of months to get a plan that would allow me to operate at a tolerable pain level (the pain is NOT completely gone), and is allowing me to have another plan when they begin to escalate out of control, while still being able to use nothing when the situation warrants. I am much more comfortable in my everyday life because I am not as anxious knowing that I have a plan, and am even more functional when I have a headache. I really couldn’t do the 28 constant days of pain that I was meditating through before. Sometimes the answer is not what you want, but it has made a big difference for me. I wish you the best.

  • laurahc
    3 years ago

    Dear Jennifer, I am amazed at all you are able to accomplish with your severe migraines. You truly are an incredible woman with the weight of the world on her shoulders. I’m a chronic migraine sufferer too and can’t seem to find any relief right now either. I hope it’s not inappropriate, but I will pray for you because that’s all I know to do. Laura

  • Hope and a Prayer
    3 years ago

    “What do people do when there is nothing left to do?” It seems to me that we keep finding something to do, even if it just keeping hope alive. We find the best doctors we can, we try different meds and treatments and we reach out for support. I wish I could offer you a miracle; it seems you could use one. But, perhaps you are the miracle. One definition of a miracle is “an amazing achievement, an outstanding example of something.” Each day you get up, go to work, care for your kids and any day you face the world with a migraine is an amazing achievement. My guess is that your family thinks you are outstanding because it seems from your story that you hang on to that rope because you love them and you refuse to give up hope that things can be better for you and for them. May all the answers you need come to you soon.

  • Maureen
    3 years ago

    Jennifer, I am so sorry you are in this rough patch. I, too, am a patient at the Jefferson Headache Center. I have a suggestion from my own experience. Dig out those papers you brought home from your visits and read them carefully. I was so overwhelmed and unwell when I got home that I didn’t really understand my directions completely. I misunderstood one and did not completely follow some steps. For instance, I noticed in your post that you called riboflavin B12. Riboflavin is B2. You may have been given a sheet with several other suggestions of supplements like magnesium and coQ10. Read them carefully.
    And when I started a new preventative, my dosing increased by 25mg weekly. Check your dosing carefully. I don’t know about you, but migraine can make me dumb, and so can my preventative. But at a therapeutic level a little bit of dumb is better than a lot of pain.
    One more thing, at Jefferson they made you do the mental evaluation. Did you call for the results? You may find it helpful to speak to your mental health professional for biofeedback techniques and other stuff they know about.
    Keep asking for help. You are worth it!
    Be well.

  • Nancy Harris Bonk moderator
    3 years ago

    Hi Jennifer,

    Thank you for sharing your very personal story. You’ve come to a great place for support, information and education – welcome! I wish I could wave a magic wand and make things better for you.

    Raising children is hard work; when you add migraine, allergies, T1D and being the bread winner to the mix, that takes it over the edge. A support network is important and its good to hear your spouse is behind you.

    It sounds like you are taking all the steps necessary to help treat your attacks. It can take a few weeks or longer to see a reduction in migraine frequency and severity when we increase our medication dose.

    Has your B12 level been checked? If you are deficient you’ll need a good dose or even injections. Here are other supplements that many have found very helpful;
    Vitamin D – https://migraine.com/migraine-treatment/natural-remedies/vitamin-d-for-migraine-headaches/;
    Magneisum – https://migraine.com/blog/magnesium-supplementation/;
    Co Enzyme Q10 https://migraine.com/migraine-treatment/natural-remedies/coenzyme-q10/.

    Is there any chance you take something every day, or near daily for pain? The thing is if we take migraine medications and/or pain relievers, whether they are over-the-counter or prescription, more than two to three days a week we increase our risk of medication overuse headache, or moh. Moh was formerly called rebound and if we are in a rebound cycle our migraines will be more difficult to treat and we can end up in a daily cycle of pain that is hard to break. We just want the pain to stop, but we can actually do more harm than good. I’ve been here, it’s unpleasant, but can be tackled.

    Oh, what about caffeine? A small subset of people with migraine who drink even a 1/2 cup of coffee a day can get moh. Caffeine is a drug, a stimulant and acts just as any other medication with moh potential. Here is information on caffeine and moh I found interesting; http://www.achenet.org/resources/caffeine_and_migraine/.

    We’re here, and we understand,

    Hang in there,
    Nancy

  • Skyanna Goodland
    3 years ago

    Dear Jennifer,
    I totally understand how you feel! I am a mother of 3 young boys and work full time too. I was very recently at the end of my rope and felt like I couldn’t hold on much longer, after years of daily chronic migraine, I had reached a breaking point. I am currently getting botox every three months, which didn’t start helping until after the fourth set of injections and my primary care doctor, a wonderful woman, who never gives up switched my preventative meds. I am currently on amitryptiline (an antidepressent) methocarbonal (a muscle relaxant) and propranolol (a blood pressure medication). The combination seems to be helping alot. I know it is hard but don’t give up, bring in online research and studies to your doctor’s until they find something that works. Also, recently started physical therapy for my neck and shoulder tension that triggers my migraines and it has made a world of difference (you might want to give it a try). I have also heard that some people find valium as a treatment that helps reduce pain during an attack.

    Hang in there. We all know what you are going through!
    Skyanna

  • Kim Leonoudakis
    3 years ago

    Hi Jennifer, I’m so sorry you are suffering so much. I was at the end of my rope. I had exhausted ALL medications and tried everything else. I finally in 2013 found out about the Reed Migraine Center in Dallas, TX. You should check out their website. 95% of my life is pain-free from my implant. Also, I recently found out my migraines, depression and other symptoms are from Lyme disease that I have had for decades. Now that I don’t have the daily migraine pain I can get treatment for the Lyme and focus on that. Good Luck! Check out their webinar.

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