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Angry woman yelling through megaphone

Help (Not) Wanted

A few weeks ago, I was in the midst of a knock-down, drag out migraine and I was not winning the battle. I hadn’t left the apartment in four days. I could really use a trip to the grocery store, stock up on some meds at the pharmacy, and realistically I needed to go to the ER. It was time to throw in the towel and admit defeat. But I couldn’t accomplish any of these tasks by myself.

Forced to rely on others

I have an amazing network of family and friends who offer all the time to help out whenever I need it. But I have a really hard time asking. I’ve always been pretty independent, but the migraines force me to rely on others. In this state, I can’t drive and I shouldn’t make big decisions on my own. Walking three blocks to the store or pharmacy is completely out of the question.

I just want my long-time boyfriend to take care of me. For him to stay home from work, make me soup and tell me when it’s time to take the next shot of DHE. I want him to decide for me when we should put me out of my misery and take me to the ER to try to break the cycle. He can translate for me when I’m in too much pain to describe what I need. With him, I don’t have to put on a brave face.

Expecting him to be a chauffeur, interpreter, nurse and pharmacist is unrealistic. He has a demanding job, works long hours and frequently travels. He has deadlines and important clients. I remember those days. It’s a full-time job for ME to take care of myself, so it’s got to be taxing on him to do double duty.

Trying not to burden anyone

Unfortunately, this scenario plays out too often in my house. Knowing that he always wants to be there for me, I try to be aware of when I really need HIM or when I can farm out some of these duties to others. But I’m not good at it. In my mind, my friends have better things to do. They have babies, or it’s a time suck on them or I feel like a burden. They work hard too. Normally a social person, I also feel like I have to entertain people when they come to my house, but I can’t even remember to offer them a drink when I’m like this. Honestly, I don’t want anyone to see me like this. I usually haven’t showered in days and I look like death.

The importance of allowing loved ones to help

But my friends don’t care. My parents will still drop everything to help their 32-year-old daughter, who they’ve seen in this condition hundreds of times. Still, I feel like there’s nothing anyone can do to help me. Sleep is my true respite, which doesn’t require an extra set of hands. However, if I think about it, just a grocery store run is a tremendous help. Those who care about me truly want to contribute to my recovery, even if it’s just to pick up some medication.

I recognize that I don’t ask for help often enough. A primary caretaker can get burned out quickly with any chronic patient. By dispersing the load in the rough times, I can show my boyfriend that I appreciate what he does for me. It will also help me from feeling isolated when I let others stop by for a visit or by responding to a text from a concerned friend. I’m learning that asking for help is not a sign of weakness. Asking for help is being considerate of those who care and worry about you.

My migraine action plan

I’ve decided that coming up with an Action Plan would help me in these times when I barely have enough energy to send a text.

  • Who is available to help me? Ask in advance if I can call on them when the migraines are severe.
  • What tasks are they willing to help with? Grocery store, pharmacy, hospital? Each has a different time commitment.
  • How often are they comfortable helping? Once a week? Once a month? Once a year?
  • Compile this info with contact numbers to give to my boyfriend so that he can help me coordinate if I need it.
  • For ER visits, I will bring a pre-printed list of all medications, doctors names, and a requested treatment plan so that I don’t feel lost without my translator/ boyfriend.
  • Remember to send my helpers thank you notes or small gifts every once in a while to show my appreciation.
  • Lastly, get over whatever issues I have about not wanting to ask for help. If one of my loved ones were in the same situation I would want to do whatever I could to help out.

For my own sanity and that of those who love me, I resolve to put this plan into action in the New Year.

How do you handle asking for help? Are there ways to improve it? What can you do to keep your caretakers from getting burned out? Share your tips or advice.

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

  • Kerrie Smyres moderator
    5 years ago

    Great post, Katie!

  • Luna
    6 years ago

    I live alone in the country and have since 1985. Had to learn to rely on self. Fortunately my acute week wasters always have a 1st day of hyperactivity along with the pain but that is the day to make sure everything is ready. I know that at least the next two days are the throwing up (wretching) can’t even keep water down. I have the routine down and don’t need help. Besides people bring a smell into the house that would just make it more difficult. My cats seem to understand when they need to just hang out and comfort.
    I dislike having repair people around because of the intense smell that emanates from their clothing/persons. It isn’t easy to get that smell out of the house especially in winter weather.

  • doug richmond
    6 years ago

    Katie, I am near 60 and have had the same problems for a good many years. not being diagnosed with just migraines but also cluster headaches as well. they hit in an instant and I have had to drive up to 100 miles with one to get back home. it is a very tasking thing to have to do and when I do get home I am exhausted. some of mine have gone on for 3 weeks and then just as suddenly disappear for weeks. do not be afraid to ask for help because that is when you find out who your true friends are!!

  • Katie M. Golden moderator author
    6 years ago

    A few of you have asked about the clinic that I go to for treatment. I have 2 amazing headache specialists. I live in DC and my primary neurologist, Dr. Jessica Ailani, is at Georgetown Hospital. I had to wait almost a year to get my first appointment with her. After years of working with her and changing medication regimens, doing Botox and nerve blocks she thought I would benefit from an inpatient stay at the Jefferson Headache Clinic in Philadelphia.

    I work with a resident there who is supervised by attending Dr. Michael Marmura. After multiple visits and evaluations, they agreed that an inpatient stay could be beneficial. In August of 2013, I spent 8 days in their clinic specifically designed for chronic migraine patients. They have a high success rate of knocking pain levels down and I even met someone who felt headache free for the first time in years. Results are different for everyone and can last years or just a few days. I will be going back to the clinic in February for another round of treatment. In the next week or so, I plan on putting up a more in depth post about the Jefferson Headache Clinic as I prepare for my next visit.

  • Newdancerco
    6 years ago

    What do they do? I realize it is specifically designed for each patient to some degree, but is there a general regimen that is altered slightly, perhaps?
    I’ve had my second trigger point injections yesterday, after Botox didn’t help, in prep for neural ablation. My concern is that ablation can last from as little as a couple weeks to as much as a couple years, but isn’t permanent even when it works. So I’m always looking for new ideas.

  • Ellen Schnakenberg
    6 years ago

    newdancerco,

    If I may ask, how many Botox treatment cycles have you had? Do you know how many units were used, or how many injection points you received?

    I am asking, because many of the patients I talk to who have had Botox may not have actually had the correct procedure. Most are shocked to learn what the actual protocol is, because so many have never had it. Botox itself also depends upon the skill of the doctor doing it. Sometimes, trying a new doctor yields different results.

    If you choose to go on with the ablation when all is said and done, I hope you have success.

    With good thoughts for you,

    ~Ellen

  • kischrjo
    6 years ago

    In response to Janet and others who wanted to know about the clinic I go to. Well i live in Idaho and of course there are people from all over the country who write in on these blogs but, I have been told these pain clinics are all over the country and the world. I have lived in Idaho my whole life and truly believe I have been to every doctor in the Pacific Northwest. I have been so low at times I think I begged to just die. There are many facilities in the larger cities but it was research that helped me. My GP was honest and told me he thought i should travel to the mid West for in-patient treatment. Who could afford that? Not me. But every day for the past three years seemed worse and I just kept trying to work and take care of my family. I spent every spare minute reading. I read blogs, i joined support groups, I researched each doctor that was recommended through these groups and I was getting very frustrated with the lack of success stories. I made a list of all my possible choices and after much research I found a clinic in Lewiston Idaho. That is about 2 1/2 to 3 hrs depending on weather. I then wrote a letter to the clinic explaining my situation, all the treatments, meds and anything else I thought might be helpful and asked if they thought they could help me, if they were accepting patients, especially since I don’t live there. I got a call and an appt. My 3 daughters are grown and I have a grandchild, a little girl 3 1/2. One of my daughters does suffer from migraines although they are rare, thank God. I trained her on everything I had been taught and luckily she will always have understanding. Something few of us have.
    The road I have endured has been a lonely one. I was raised by a single parent and she got breast cancer in her 40’s and died at 50. My husbands parents were gone and my own isolation kept me from making friends. I could never function well enough to do anything extra. My goal each day was to get up, go to work, take care of 3 girls, a house and a husband and at least 1 animal and this was too much with the migraines. I recall hearing the baby wake in the morning and crawling on the floor to her bedroom and underneath the crib and i would play with her through the bars to keep her quiet while lying under the crib(darker under there and I could not take light). Looking back I have no idea how I made it through the car rides with screaming kids, loud music, running stomping kids, and Lord can girls scream whether they are playing or fighting with one another. We always lived far in the country so doctor offices and hospitals were almost an hour away. Then what do you do with kids in an emergency room in the middle of the night-you don’t! Over the years my spouse got tired of waiting for 6 or 7 hours in the ER so he would take me to the front door and drop me off and I would have to call him to come back and get me. As I said, it has been lonely dealing with this disease.
    People really just cannot understand if they haven’t lived it. My personal experience could help others and that is why I take the time to share and I think it is therapeutic for me too. Not everyone has family and friends to lean on so for those like me you have to make sure you have a current med list in your wallet, i have a letter on a prescription pad that my doctor wrote explaining my high tolerance for pain, pain meds and the huge list of allergies to meds. When I cant think I can just hand it to them. I keep frozen meals since I wont be cooking, I have my medication rituals written down for my husband, I always have at least 6 gel ice packs in the freezer to apply to neck or head, I own a good heat pad with timed shut off, I drink as much water as I can get everyday no matter if it is a migraine day or not, I keep tea and coffee on hand so I can sip warm drink and caffeine can help if I don’t drink too much. I try to keep boxes of broth on hand as it is warm and gives me some nutrition, its easy to get the box and heat a cup at a time the rest can be refrigerated. I also have a small bag in the bathroom with hair bands to hold my hair back when I am vomiting, clean clothes to wipe my face, and a bottle of water in case I am home alone. I hope you are all able to find a good doctor and just knowing you can come here to get advice and know you are not alone.

    God Bless
    kischrjo

  • Mpg210
    6 years ago

    Katie
    I totally get your story. I am 43 years old, single and I rely on myself to take care of my migraines. My parents and family members are always there for me, but sometimes they get overwhelmed with my chronic migraines…most of the time I suffer in silence. I have been dealing with migraines since I was 2 years old and I feel like my whole life revolves around my headaches. I know that I would rather suffer in the comfort of my own bed instead of the hospital. I feel like every 6 months or so, my treatments change since they have yet to find a mix of meds that work for me the best. Since I am a high school teacher, I only make changes in the summer time so that I can adjust my schedule to the new meds.

  • Leslie Coutsouridis
    6 years ago

    Katie,
    I totally agree with your comment about your immediate family(caretakers) getting burned out. I’ve been blessed with 2 women who have volunteered and are devoted to helping me with errands and appointments( that are not too far out of town.) One is a widow who was told about me. Her granddaughter suffered for 15 years and she wanted to devote time to someone like me! Another is an old friend and neighbor, early retired,whom I ask and she takes it very seriously also. Sometimes I need to call them from the E.R. to bring me home! Do you know anyone who is most always free during the day, would actually like something to do with their time, and would be compassionate enough to do this for you? It could be someone you don’t know. Reach out to them and see what happens?
    Never lose hope, Leslie

  • Not-Again
    6 years ago

    One quick easy way is to use eVite. As if you are inviting people to an event to bring food or beverages, etc., just make a mVite. You can create a basic one with all categories for people to help. Examples: Grocery Store Run, Take Me to ER, Take Me to Nuerologist, Pick up my Meds, I need a cooked meal or whatever you might need or want. Send it out to your family/friends/neighbors as soon as you get the migraine so they can plan and you get what you need when you need it. It takes the hurt out of the asking. Then when people get to respond by selecting what they can do for you, it will show up on your eVite (mVite) so you don’t get duplicates. Once you have recovered, you can send them an eCard to say thank you.

    The truth is no one understands what having migraines does to your health, emotional, spiritual, and social life unless they have them as well. The next time someone tells me to “Put on your big girl underwear and get on with your day”, my response will be “Here they are – you do this for a day and then let’s talk.” Of course, you can’t give people migraines if they don’t already get them; however, the thought of saying that makes me feel better. I’ve come to the conclusion that I am worth it and the best thing I can do for myself is to recover from a migraine as quickly as possible. Note the :best thing I can do for myself. Not my family, not my friends, not my neighbors. I hope this will help and inspire you and give you an easy way to quickly communicate when a migraine hits. For me, once one hits, I can’t think straight, so setting something up before hand and even writing yourself a note taped to your phone or tablet to remind yourself to send out the eVite might be a big help.

  • Katie M. Golden moderator author
    6 years ago

    Not Again- Your eVite idea is perfect!!! I am absolutely going to do this! Thanks so much.

    PS- love your screen name.

  • Jan Piller
    6 years ago

    Yes it is exhausting!! What a good way of putting it – I never would have thought of it that way. But I’m getting to the age where I’m learning to say “screw this”. Hubby keeps saying “look after number one”. It’s my own family that has always made me feel like I’m not entitled to “be” number one. They’ve never acknowledged my pain, or deformities or struggles for the last 26 years. No more “happy face”! LOL!

  • laurahc
    6 years ago

    I counted on my husband to help me. He never complained once. Then last Saturday he just left me without any warning. I don’t have any income because I have chronic migraine and yet he just walked out on me with no excuse. I have a 15 year old daughter I have to take care of. I don’t even know where to start. My parents are here helping me now but they will leave soon. It’s not just that the love of my life walked out on me, it’s that I literally don’t know how to manage my chronic illness without him either.

  • Newdancerco
    6 years ago

    Laurahc,
    I hope you have been able to begin to find footing now, as it has been a few days since things were knocked upside down for you.
    I finalized my divorce about a year ago, but one of the hardest yhings was (and is) coping with chronic daily migraine and a 5 year old boy, with no fallback.
    However, I stand as proof it can be done. It isn’t easy, but then neither is living with a headache that only responds to heavy narcotics (in my case). If you can survive with chronic migraine for any length of time, you can do ANYTHING.
    Talk to a lawyer, he may have a responsibility to continue to support you and most certainly must support his child. Let the lawyer do the heavy lifting of the case if you can and trust them (check for a pro bono or community service to help defray the costs).

    Talk to your church if you have one. They may have people willing and able to provide support for ER runs, etc. Or a chronic illness support group, if such is available in your town, may provide contacts that become support.

    You can do this. It isn’t fair or right or fun or easy, but it isn’t as if migraine is either. You conquer that each day you live, you can handle this.

  • Katie M. Golden moderator author
    6 years ago

    Laura,
    My heart absolutely goes out to you. This must have completely rocked your world. I don’t know you or your situation, but you can’t blame yourself or your chronic illness (which is a disease that you didn’t ask for). If you are strong enough to handle your Migraines on a daily basis, then I know you are resourceful enough to deal with this roadblock as well. Ask help from your family and friends and remember to take care of yourself, BECAUSE YOU DESERVE IT!

  • kara100
    6 years ago

    I suffer from debilitating migraines, but have never asked for help, even though friends have offered to go to the grocery store or do other errands. I have no children, so it’s easier for me not to need help. I sympathize greatly with mothers who need assistance. Otherwise, planning is the key for the bad days. When I feel well, I don’t want to spend time with Thank You notes. I would have to write too many, and it would get old for all after awhile. I always have food that I can rely on that is quick and easy. Prescriptions can be automated and shipped. Bill paying, ditto. When I am suffering, I want to be alone. It’s not easy to be around people who are miserable with pain, so I don’t allow my friends to experience that. I want to save their help for worse times. I recently had a first-time seizure, unrelated to migraines. My doctor and the state did not allow me to drive a vehicle until my situation was determined. I then needed friends to take me to a grocery store and doctor. Have not had another seizure, no epilepsy, am now driving. I now know of a reasonable delivery service for groceries. Yard work needs to be done by a service. My life would be easier in an apt, am working on that. Simplifying and automating my life works for me. Allowing my friends to be friends, rather than caregivers, is important. They already have to find patience for me when I cancel due to migraines. Depending on others often isn’t a good thing for many reasons. Of course, I have accepted my situation and that makes it all easier. I am thankful for what I can do or manage well.

  • Catherine
    6 years ago

    Hi. Joelle here. I’m a stay at home mother of two boys who are now both in school full time during the day. (ages 7 and 9). You are so lucky to have the help from your family and friends. I am 40, and have suffered migraines for about 15 years. They didn’t get bad until after my 2nd son was born. I was up to 22 migraines a month, seeing a neurologist with no luck, chiropractic care, P.T. for neck pain, abortives/preventatives/etc.etc. Finally had a two level cervical fusion in 2009 to help with chronic migraine due to spinal stenosis and two severely herniated discs pressing upon my spinal cord. Was told without surgery if I fell or got rear-ended I would likely be paralyzed. Surgery was hell but helped in the long run control the migraines until the last year or so. Tried Botox for 1.5 years, (helped a bit but not worth the post pain and pain during procedure since they have to put it in my neck, base of skull, temples, etc.) occipital nerve blocks, acupuncture. All failed me. Now back to seeing a 2nd neurologist because I’m a “complicated case,” and my current neoro can’t do anything else for me. I’m going to see a Headache specialist/Neuro who has experience from Mayo clinic in February but what to do in the meantime? Wait impatiently and hope not to go to ER again. (have been there 3 times since November. You are blessed and lucky and so fortunate to have such a great support system. Most of my family and friends are burned out from me asking for help so many times in the past. I’m afraid to pick up the phone to call anyone to ask them to take me to the ER. Being a wife/mother/daughter/sister/friend/volunteer all seem impossible when my migraines hit. They half paralyze me. Blessing to us all on a migraine free day.

  • Christine
    6 years ago

    Thanks for sharing. So relatable! Love the action plan.

  • mscwds
    6 years ago

    No one in my family takes my migraines serious even though I’ve suffered from them for 20 years now. I had to move back home with my parents for awhile now because I couldn’t keep a job due to the many migraines I had that caused me to miss so much work. When I do get a migraine, my Mom simply says “I’m sorry,” while my Dad says nothing at all. No one tries to keep the noise level down, nor will my Mom take me to the ER if I ask her to. The only other person I have is my sister who, for 20 years now, has not once acknowledged my migraines. She simply tells me “I need to get a job.” This infuriates me because others have no idea how debilitating a migraine can be unless they have experienced it themselves. I actually feel guilty when I have a migraine because I feel as though no one believes me, so I don’t ask anyone to help me with anything. There is such a big stigma associated with migraines. Just because others can’t see the pain they have a hard time believing it’s there. My migraines have brought on another diagnosis, which is depression. Simply put, migraines basically tell me when, where, and how I can live my life. I can’t plan anything because a migraine won’t let me know if I’m unable to go until the last minute. I have no boyfriend, friends, or contact with the outside world except through the internet. I feel like migraines are the prison that is keeping me locked away for life as I look out into the real world and see others living their lives as I watch mine pass me by day by day.

  • Katie M. Golden moderator author
    6 years ago

    Cindy,
    Did you see Kerrie’s post today, where she also called the Migraine experience like living in a prison?
    My heart goes out to you and the pain you endure. It has to be hard to feel like your family doesn’t understand or support you. But they do love you or else they wouldn’t be helping you while it’s too painful to work. Have you ever shared any Migraine data with them? The Migraine in America study has a lot of great data to show them you aren’t making it up and you’re not alone.
    http://migraine.com/chronic-migraine-in-america-2013/

    Maybe showing them posts or comments from other sufferers will help them understand your plight. No matter what you do, I hope you get some benefit from visiting sites like this to realize you are not alone.

  • Leslie Coutsouridis
    6 years ago

    Have you applied for disability? It might help somewhat. Leslie

  • MigrainesAlwaysHaveOne
    6 years ago

    My heart breaks for you as I read your words. A lot of your story is mine as well. I lost many jobs due to call outs from migraines and ended up on disability. My family and friends are burnt out from 25 years of migraines and no one really understands the devastation that it wreaks on your life. My boyfriend is great with picking up the pieces, ie feeding animals, making dinner, but sometimes I feel their is a resentment there, and I can’t really blame him for that – I think its human nature. All I can do is what I call “working ahead”. When God grants me that rare migraine free day, I work like mad scrubbing bathrooms, going to the store, and all the other things that make up the lives of normal people. I have lost friends, boyfriends and jobs to this disease. I would love to give the whole world a migraine for a week and make them go to work, and carry a full load all the while in pain and then see what they have to say. Maybe that’s mean, but I think unless people experience it for themselves, they have no idea. You can write me through this site anytime you need support. Hang in there – its got to get better, right??

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Katie,

    Great post with great ideas! Thanks for sharing and welcome aboard!

    Nancy

  • stacysillen
    6 years ago

    The brain lesions are likely to be from bad migraines, it’s in the literature. It truly sucks when migraine crosses over into “chronic” migraine, that happened to me. What finally works is botox with nerve blocks in between. And still triggers can flare them up! A good headache specialist is so vital. Mine is young, freshly trained. She identified MOH (medication overuse headache) and demanded I get off the other meds I’d been prescribed, which weren’t working anyway and I still have side effects from them. Some people are afraid of the botox needles, not me,it’s the least of my trials. I still can’t deal with asking for help unplanned when I’m in it, it is even hard to think clearly at it’s worst. I get more stressed out trying to explain to people who can’t quite believe me, so I’d rather just be alone. Thank God for my husband who will stop off on his way home to get meds, will bring me ice packs, meals, and who will believe that I will get better eventually, as I always do. God bless all you guys!!! Someday either most people will learn more, or there will be a cure, or both! Won’t that be great?

  • Jan Piller
    6 years ago

    I’m glad you have a good husband. So do I and I’m soooo grateful!!

  • kischrjo
    6 years ago

    Hello, i can relate to so many of these situations. As i have suffered since age 5 yrs. Over my lifetime the migraines have increased. First with menstruation, followed by 3 pregnancies, and then over the yrs i slowly learned all my triggers. They are stress, hormones, barometer pressure, some foods and finally rupture to my cervical spine. I have vivid memories of missing out on a lot as a child. Always getting migraines when something exciting or fun would approach. Drive in movies (a very big deal when i was young), birthday parties, sleep overs, camping or fun things of any kind. I always got a migraine. Must have been the excitement. In the last few yrs they have been increasing to the worst they have ever been, 15 to 25 days a month. Like others i count on my husband of 28 years to help me with everything. I thought they would eventually go away as i grew up but no chance and my hubby has been my wing man through it all. I have been on so many medications, treatments and trials over the past 43 years. These range from 11preventative meds, 2 antidepressants, 13 attack aborting medications, vasoconstrictors, 11different narcotic analgesics, every non narcotic med on the market, so many combinations of these meds to many to count. currently on my 5th nausea med,(finally this one is working). I have been to my GP, 5 neurologists, a very good homeopathic physician and many specialists. Also every recommended therapy such as physical therapy, oxygen therapy, biofeedback and imagery training, homeopathic treatments, chiropractor, massage therapy and acupuncture therapy just to name a few. I had all but given up as the only thing that has ever worked is toradol mixed with nausea med and a very strong pain killer like demoral or dilaudid. I will do just about anything to avoid the horrible ER. I have never had a comforting or pleasant experience yet. I have a high tolerance for pain but also after all these yrs I have a high tolerance for pain medications.

    Finally, two years ago I traveled out of my area and went to a highly recommended interventional pain clinic. After 40 yrs of suffering and being a burden on my family, i found a fantastic doctor who is extremely intelligent and someone who looked at the whole picture of my health. He is straight forward, which i appreciate, with a goal of getting a full diagnosis. My first visit was so great- he knew what to do to get some answers. He did an MRI, ran a large amount of blood work and was very supportive of my situation. He diagnosed my ruptured cervical spine, changed my medications and began trying to treat the actual problems. He was very honest as well. He told me he believed he could help reduce my suffering but that my situation was very unique and I would never be migraine free. He also assured me he could at least improve my quality of life. He has not gone back on it yet.

    No matter how long it takes- the key for me was to find the right doctor. If I could go back 20 yrs I would not have been the Guinea pig for all the drug companies. I still suffer from permanent side affects from yrs of being pumped full of drugs that didn’t help me one bit, i just suffered side affects on top of the migraines.

    People can be so insensitive of migraineurs. They can not see it so it does not exist. We are often treated as drug seekers and treated with disrespect. I find this to be so disgusting. If any of these folks who treat us this way ever had a migraine they would think they were dying. In my opinion, people who suffer this disease are the bravest, hardest working and strongest human beings I have ever met, and after all these yrs I have met so many.
    Good Luck no matter what type you suffer from.

  • Jennifer Schmitt
    6 years ago

    Thank you for your reply to the post. Both your story as well as the original post, feel as though I’m reading about myself. I am 38 years old, and have had chronic migraines for 15 years. They were controlled for several years, and during my 3 pregnancies. Until my last baby was born 16 months ago – the have become chronic daily migraines again. I have had no relief from the pain in 16 months. I have seen 5 different neurologists, my ob/gun, primary care dr, 2 chiropractors…in the past 16 months. I am trying a new neurologist on the 14th, since my appointment with my current one yesterday said there was nothing more he could do! He said my case is extremely rare, and isn’t sure what else to do. Like you, I have been on numerous preventative meds, all the triptans – which don’t work at all, DHE, etc all of which haven’t brought relief. I would love to hear about the clinic you went to. I am willing to travel to get some relief. Thank you for sharing, it is truly nice to know that I am not the only one suffering.

  • Katie M. Golden moderator author
    6 years ago

    Your story is so similar to mine- tried all the same meds and therapies. Even your ER regimen is the same. Everytime I see my headache specialist I want to hug her because it’s amazing to have someone understand my pain. I wish you had found yours sooner.

  • Janet
    6 years ago

    I would love to know more about this clinic you refer to. Where is it located and how did you get the help and relief you did. I’m at my wits ends and suffering all over again in the worst way possible, I’ve thrown in the towel on finding help. Some of us just can’t be,…then I read a blog and wonder “why not me”…
    Like you I’ve been a Guinea pig way too often…but I know I can’t continue taking frova every other day either. DHE FAILED … and left me with side affects now 2 years later. Sufferer since age 10 my family could care less and are sick of me. I give credit to my husband for sticking around. The last several years have been so horrible since I went chronic in 2004. Don’t do much..don’t go out…do go on vacation…I’m lucky when I get part of a day because sadly I know the next day I’ll be slammed. I’d appreciate any insight.

    Thank you.

    Blessings
    Janet

  • Michelle Glenn
    6 years ago

    As I read this article, I found myself thinking that someone had invaded my thoughts and wrote this from my perspective. Thank you! As a 30 year old, I hate to rely on people, but I know that my brother, mom, and dad would drop anything to take me to the ER. My dad often buys me groceries. Mom will do anything, even if it’s just rubbing my head. I have got to become comfortable giving up more control to others, if they’re willing to help. Thank you for being my thought-twin!

  • Katie M. Golden moderator author
    6 years ago

    Michelle, thank you for your kind words. It’s always nice to know someone feels the same way. And being taken care of by your parents is nice no matter how old you are!

  • RTurner
    6 years ago

    It is great that you have support from your family and friends. You should feel very lucky. The family that would help me unfortunately do not live close and the ones that do live close – well, they are just to busy – and migraines are really not anything more than a bad headache so get over it (not worth the argument, I just end up in the ER sooner). I have one friend and she unfortunately is in about the same boat as me, she is unable to drive. So my husband is my main support and this is very hard on our marriage. He gets very disgusted having to work full-time and also take me to the doctor or ER. I have gotten it to the point that I have all my meds and information written down so he can drop me off and I can call me when I am ready to go home.

    Jan, I do understand your how you handle asking for help – I also do that when necessary.

  • red2babe
    6 years ago

    Jan, I agree with you 100%. My husband is a type 1 diabetic and I have suffered with migraines since 2005. He does seem to understand my pain but also doesn’t know what to do to help me make it go away. He just wanted to take me to the ER at 1st all the time until he saw that I would come home in as much pain as when I went. He doesn’t understand why nothing seems to help when they are at their worse.
    I also have brain lesions that they found in 2005 and more and more of them are appearing also. No answers of course. Just more questions and more symptoms besides the migraines. It is frustrating dealing with life daily and trying to work part time right now. And of course, the usual looks I get when I mention the word migraine……..

  • Jan Piller
    6 years ago

    It always boggled my mind that if somebody says they’re diabetic, they are believed without question and people will go to great lengths to support a diabetic by making healthy meals and snacks. But if a migraineur (god forbid) should ask for a quiet room in which to recover, they are labeled liars, hypochondriacs and attention seekers.

  • Jan Piller
    6 years ago

    You are very lucky indeed to have so much support and that you can be honest with so many of your friends and family. I think that’s one of the major components in learning to manage the pain and nausea. I have kept my condition secret from friends and family (26 years now) because I am not believed.I have worked so hard to keep on that “happy front” and I have continued to work full time (except when the depression nailed me to the wall – I even lied about that, putting blame on work stresses – it was in fact “working with migraine” that got me). So How do I handle asking for Help??? I don’t. I just avoid people as much as I can.

  • Katie M. Golden moderator author
    6 years ago

    Jan,
    Hiding your illness must be really exhausting. I bet you feel really lonely in your struggle. The stigma of Migraines can be a difficult burden. I hope you find compassion through the Migraine.com comunity.

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