2035+ days and counting….

I have had a migraine / headache for that many days in a row. Often I ask myself how is that even possible? And yet, here I am, unable to break the cycle.

I remember the exact date in February 2011 when I got a migraine that lasted 3 solid days at an 8 to 10 (out of 10) pain level. I had a short bout with migraines in my mid-20’s but, nothing since, and here I was 51 years old and life has never been the same since. Of course, the pain level fluctuates daily, often hourly, and has but on a few occasions dipped to a 4 on the pain scale, however, I consistently live at a 6. I am exhausted – physically, emotionally, energetically and spiritually.

I have lost everything to this disease, literally and figuratively, and still today do not have a workable solution for what I walk through each and every day.

I was a fully functioning adult at high levels – helped get start-up companies off the ground, ran medical clinics, did a few sailboat deliveries… I had friends, a well-paying job, was fairly healthy, and these past few years I’ve lost my integrity, self-esteem, health, ability to support myself, friends have gone away because I couldn’t show-up, family members don’t believe me nor are supportive, traditional health-care practitioners have been disrespectful, bordering on callous at times. Why would I make this up? Baffling. Anxiety, fear, depression, isolation, and shame are my companions.

I am very bright and have spent every last penny to ‘figure out’ what’s wrong with me and find a solution. I have taken every common migraine preventative and abortive Rx; none worked and most made me sicker with side effects. Then moved on to alternative practitioners and tried everything they had to offer – chiropractic, acupuncture, naturopathic and homeopathic remedies, cranial-sacral manipulations, essential oils, shamanic extractions, massage, Chinese herbs, food elimination diets, and the list goes on. Many modalities helped calm my nervous system and general health-wise were helpful, but none ‘yet’ have successfully decreased my frequency and severity of migraines. I still strongly believe there is a hormonal component – menopause induced – and am working on this piece.

So what do I do? I’ve found a few things help me get through my days… yoga, mild exercise, being in nature, deep tissue and trigger point massage (for my jammed up neck), consistent sleep and meals, relaxation / meditation CD’s and/or practice and the one thing that provides the most relief, even if temporarily, is Body Talk sessions with a practitioner. My sessions are remote, yet still profoundly affect my entire body, mind and spirit in a positive way.

Reality is… I don’t feel well most days. My head always hurts. My body hurts. I feel hopeless many days. I don’t know how to accept my limitations. I don’t know how to create a life for myself when each and every day is uncertain and therefore making commitments feels futile.

Yet.
Here I am.
Doing my best to put one foot in front of the other.

Hoping the stigma will eventually change.

Hoping research dollars can be funneled into this devastating invisible illness.

Hoping one day, I can find relief.

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 (36)
  • Luqu101
    2 years ago

    Hi sharon, I’m new on this forum and I just submitted my story , but is not posted yet. I have been migraine free for 21 one days . It is a miracle that I can’t believed is happening to me . Is a long story ,but here is how I did it . Please read the book What your Dr. May not tell you about premenopause by Dr.John R. Lee and follow the recomendaciones on the book .i just learned that after all this time I was hormone imbalance and bought the cream suggested in the book Emerita Pro-gest cream . I got it from amazon and please read the reviews. The reason . reason i joined this forum is bc i want to Pass this info a long. Good luck to you ! Hope people read My replied to you ,
    it is a hope at there.

  • Christy Bell
    2 years ago

    I understand your pain. I thought that I was the only one going through headache like this. My headache has been going on since 1997. It, too fluctuates daily. I sympathize with you. I wish you luck in finding something to take away your pain for good. No one should have to suffer with this kind of pain.

  • Rischa
    2 years ago

    Hi Im new to this forum, but not to migraines. I started getting headaches at the end of my period for 2 days and I would guzzle black tea and it almost helped, interestingly they started while i was on hormone therapy for perimenopause. i fired the doc who was giving me the hormones but i kept having the headaches.
    I had those headaches for about 10 years then one night POW! i had such a searing headache it made my face hurt so bad, i didnt know what as going on, i had them ocassionally for about a year, then they became more frequent. I tried various OTC meds and then when my brother suggested going gluten free it got WAY worse(3 in a week) so i decided to go back to a time when i felt best, eating low carb nothing but veggies and eggs and meat. no grains of any kind no fruit and no dairy. its hard to stick to. so fast fwd a few more years and I decided that corn is the main culprit, but now im still having migraines. I just went to the hospital yesterday and got treated like a drug seeking addict even tho i never asked for drugs. The wierd thing is my migraines are changing and i got scared thinking i have a brain tumor or something. and its getting to be a daily thing instead of a once a month thing. I feel for us all on this site. Im considering moving to a state where marijuana is legal. are there any testimonies on this forum of people who have found releif with marijuana(where its legal of course) im curious, i have found some anecdotal stories of releif on other sites. I gotta say this blows.

  • ktsf
    2 years ago

    Hi Sharon and others with multi-year headaches and/or migraines,

    I had a migraine every day, constantly, for about 5 years, after a few years of episodes lasting weeks and then months. The pain level got worse over time until my average was a 7, and other odd symptoms started to accumulate–dizziness, constant tinnitus, extreme thirst, major brain fog, body temperature control issues, horrible pain in my neck and between my shoulders. When I wasn’t at work, I was laying down, because I felt a little better when flat.

    I saw probably 10 different neurologists over the years and tried every kind of preventative with little to no success. Ditto alternative treatments from acupuncture, massage, chiropractic to cranial sacral therapy and Rolfing.

    Finally, earlier this year, I saw a new doctor who suspected a spinal fluid leak based on my history, symptoms, and hyper flexible joints.

    A leak means the brain and spinal cord aren’t surrounded by as much of a cushion, and the pressure in your brain and spinal chord can be too low. All of this puts stress on various nerves, irritating them and causing inflammation, which in turn can cause head pain and other weird neuro symptoms.

    After possible leak locations were ID’d, they were patched with epidural injections of my blood or fibrin glue, and afterwards I didn’t have any head pain for weeks. It was so amazing, but at the same time I didn’t really know how to live without the pain because it had been there for so long.

    Just wanted to point this out to others that have had no success with all of the treatments tried over years and years. I had completely lost hope of ever feeling better or even knowing why I felt so awful. Now I have a cause (and no one can tell me I’m exaggerating or faking ever again) and a treatment, and can see a future in which I get to have a real life beyond work and bed.

    Apparently CSF leaks can happen spontaneously, and are more common than previously thought, so it’s worth looking into at least, especially if your head pain is worse when upright and better when laying down. Hope everyone finds their solution!!

  • Falcon6
    2 years ago

    Thank you so much for sharing this! Finding a good doctor who really wants to help AND has the knowledge is such a challenge.

  • DonnaFA moderator
    2 years ago

    Hi Falcon6! Have you seen our article Is It Time For a New Migraine Doctor? It has some links to help you connect with headache specialists in your area.

    Thanks for being part of the community! -All Best, Donna (Migraine.com team)

  • DonnaFA moderator
    2 years ago

    Hi ktsf! Thanks so much for sharing, and we’re so happy to hear that you have found significant relief. As Tammy discusses in Chronic Migraine or Something Else both low levels and high levels of cerebrospinal fluid can cause or contribute to migraine-like pain.

    Thanks for being part of the community! -All Best, Donna

  • DeborahS
    2 years ago

    I’ve had heredity migraines since I was 10 years, no matter how bad the pain was I always toughed it out. I can remember coming home from school crying because I was in such pain. Everyone, including my mother, who also had migraines, told me that when I went through the “change of life, the migraines would lessen or go away. Well mine got worse with age, I’m now 65 and I have a constant migraine everyday! I watch my diet, exercise, take herbal supplement, nothing really helps. I refuse to take traditional drugs because of the side effects. I go to work everyday in pain and if I do mention I have a migraine someone will say “Oh…a headache, that’s nothing”, so I just learn to deal with suffering through each day.

  • DonnaFA moderator
    2 years ago

    Hi DeborahS, I’m so sorry to hear that you are struggling. Each of us are individuals, and our bodies react differently to stimulus. Please know that you’re not alone, many of our members have experienced an increase in migraine with menopause.

    I also understand wanting a more homeopathic approach to treatment. You may be interested in reading some of the articles dealing with natural remedies and you may also be interested in browsing some of the information relating to different dietary approaches.

    I’d also like to invite you to check out our Facebook page if you haven’t already. Please know that you’re not alone. We’re glad you’re here and part of the community, and we’re always here when you need support. -All Best, Donna (Migraine.com team)

  • inquisitivespirit
    2 years ago

    That’s like me! I’ve had a constant migraine since at least the beginning of 2012. It’s hard but we have to keep going anyway

  • Sharon author
    2 years ago

    I agree inquisitivespirit!

  • DebinIndiana
    2 years ago

    Thank you to Sharon and all the others for sharing your experiences. It just puts things in perspective to know we are not alone and get tidbits of information. Friends laugh when I say I’ve gone 2 whole weeks without a migraine, but I explain there are many who are thankful for a day without a migraine! Donna, (moderator) thank you for responding recently to me and giving me info when I had a bad experience with neurologist office. To all the migraine sufferers, hang in there and let’s hope to be free of them one day. I am 53, surely within the next 5-10 yrs?

  • Sharon author
    2 years ago

    Thanks DebinIndiana — me too hoping for each and every one of us at least a somewhat manageable plan for pain reduction.

  • LindaG
    2 years ago

    Sharon,
    I really understand how you feel. While my headaches are “only” 12 times a month rather than daily, I have many days that I just pray to die. The pain is horrible and I have had enough of it. My newest thing that I am trying is a study of an infusion by Teva (an Israeli company) that they are trying on people that “nothing has worked”. I had to prove that I have been on multiple drugs (about 40)that haven’t worked. I have a 66% chance of getting the drug and a 33% chance of a placebo. I go in on Wednesday and I am praying. So far, it seems to be reducing the migraines by 50%.

    My doctor suggested a book that another daily-migraine patient of his recommended. It is called “Heal Your Headache” by David Buchholz. While I need to wait until the study is over before I try his suggestions, and I haven’t finished the book yet, his is a 1-2-3 method. One is to go off the triptans and abortives cold turkey. His theory is that you can only take these drugs twice a month although my neurologist told me twice a week. He says that until you go off the abortives, preventatives won’t work. He also is pushing the migraine diet (totally obnoxious, but I am completely desperate). So first I will see how the study works for me and if I have had no success, then I will try the methods in the book. It sure is painful to not treat a headache, but the author is right when he said that the triptans seem not to work as well with overuse than when I first started taking them.

    Praying for all of us. I’m just lucky that abortives worked when I had young kids and preventatives worked during my workiing years. These days, I can’t plan on anything!

  • Sharon author
    2 years ago

    LindaG – I just picked up his book again to re-read (part of my collection) and am giving it consideration again. I went off everything cold turkey few years back – it was challenging – sadly just wasn’t ‘my solution’ but each of us has to decide what is worth trying. Desperation can be very motivating. 🙂

    I recently tried an IV infusion with new neurologist – didn’t work for me, but for others it does work. Next going to try a cranial nerve block and see what happens. After that, he is doing research studies with CGRP and could consider that option. Hoping something crosses your path to help in your journey.

  • rosie.smiles
    2 years ago

    Sharon,

    Thanks for sharing your story. I can sympathize with you. I was in a very similar situation. I had chronic headaches (pain 24/7/365 in my head) with episodic migraine, then it turned to chronic intractable migraine. It was like living a nightmare and sometimes I just prayed to die. I’m sure you understand. I tried all kinds of medicine, injections, natural treatments like herbs and supplements, neck treatments, diets, etc. with no help. I had a lot of tests and nothing serious showed up to be causing the migraines. I did what the doctor recommended like exercise, plenty of sleep etc….I went to many specialists and even had sinus surgery and TMJ surgery (those surgeries did help the TMJ and sinus problems, but not my headaches like we hoped they would)…I was so tired of going from doctor to doctor. All doctors pretty much all gave up on me and told me they were out of options, except for a plastic surgeon in Bangor, Maine who does migraine surgery. I had that surgery in May of 2016 and my migraines are 100% gone!!! 🙂 It has been so amazing and I am so thankful. It helped my regular non-migraine headaches a lot too. Now I just get headaches sometimes instead of ALL the time (medicine at best would dull it, not take it away)…and if I do get headaches–they are much better than before–they actually respond to OTC meds if I have to take them. It’s great being off prescription meds and things like Botox that didn’t help anyway. All that to say…I just wanted to throw migraine surgery out there as an option. Maybe it’s not the answer for everybody, but it sure was the thing for me. I recovered really well and all of the scars are well hidden. It hasn’t left me with any bad/unwanted effects. Please feel free to ask any questions…I am happy to answer. I do hope my experience helps someone else.

    Take care,
    Rosie 🙂

  • Sharon author
    2 years ago

    Thanks Rosie, Donna and others re this possible option. So glad you found something that worked.

  • rosie.smiles
    2 years ago

    It’s David Branch, MD in Bangor, Maine (I live in Maine so it was great–barely 2 hours away!)…he is amazing…I can’t imagine having anyone else do the surgery, although I know there are a lot of people out there who do it. He is considered one of the pioneers in migraine surgery so he’s been doing it for a long time. I think it’s worth traveling from far to see him. http://www.northeasternmigrainesurgery.com

    One more thing–my insurance did not cover the surgery. I think fairly often they have success at getting insurance coverage, but not in my case. Insurance will claim (at least the company I have) that it doesn’t work and is not proven, but it totally changed my life. Let me know if you have questions!

    ~Rosie 🙂

  • Piglet
    2 years ago

    I would like to know the name of the surgeon. I live far away but I would circle the globe if necessary. Can’t figure out how to pm n this site.

  • rosie.smiles
    2 years ago

    Hello Piglet,

    It was nerve decompression surgery. They removed muscles from around the nerves above my eyes and at the back of my head and cushioned the nerves with fat. The muscles were putting pressure on my nerves and that can trigger migraines…so it’s fairly simple: they remove what is irritating your nerves. I had a very small incision at my side where they took fat from. The nerves in my temples were taken out. I also had nasal surgery which was a septoplasty and partial turbinectomy for a deviated septum and nasal contact points (where my septum and turbinates were touching and creating nerve irritation). Not everyone’s surgery is that major, buy my pain was so wide-spread that I got the whole works done (and was glad I did). The goal of the surgery is to take pressure off your nerves and keep them from being irritated. Does that make sense? Feel free to ask more questions and I will do my best to answer; or if you want more information, I can also provide some links to websites or articles that may do a better job than I can at explaining. I totally understand the desperation and feel for you. I was so sick and miserable, and this surgery was the answer we were seeking for a looooooong time. I also had an amazing surgeon in Bangor, Maine–I give him the highest recommendation.

    Take care,
    Rosie

  • Piglet
    2 years ago

    What kind of surgery was it, specifically? Where did you have it? I am ready to try anything.

  • DonnaFA moderator
    2 years ago

    Hi Rosie, thanks for being part of the community and for sharing so freely of your experience.

    The amazing thing about this community! We may be, each of us, isolated in our geographical locations, but here there is a wealth of camaraderie and experience to share. -All Best, Donna (Migraine.com team)

  • Kara
    2 years ago

    I agree with everything you said Sharon. I too have suffered from a daily migraine every single day for years. I am at a loss on what to do. Thank you for your story and I hope that they find something in the near future to help all of us.

  • Sharon author
    2 years ago

    Kara — recently met a new neurologist and he has been using IV infusions to ‘break’ the insipid migraine. He has had much success, but did nothing for me. After so many years, it’s a hard cycle to break.

  • MARY HOLLOWAY
    2 years ago

    Hi Sharon, I was so elated to read your journey.I am Mary, and I too have migraines and its unbearable at most times without relief.What haven’t figured out as of yet is why the physicians seem like it’s nothing since I;m always in pain.I take Imitrex which only lasts 15 minutes at best.I live in Florida, where they have a higher rate of substance abuse…But I’ve never abused any substance, drank or smoked, I want the pain to go away. I had an auto accident in 95 and its now been 21 years no, and It’s as they returned with a vengeance.I’m tired most days because the long periods of a migraine drain you of every bit of life you can muster up.I”m glad to be a part of this forum just seeking others like myself. #STILL PERSERVERING#

  • Sharon author
    2 years ago

    Mary — thank you so much for sharing your experience. I understand. All my best.

  • headake
    2 years ago

    Sharon –

    Thank you for sharing your story. Mine is similar, years and years of migraine pain (5 – 8+/10), every day, constantly. Trips to Urgent Care when it hits 9 and I’ve learned very discrete ways to barf. Current headache specialist (3rd one, he’s very good and empathetic) says it’s cluster migraine, but even that diagnosis has some controversy as I read larger migraine discussions.

    Took every med in the regimen, surgery, Botox, Imitrex sent me into afib, limited diet (would pay $ to be able to eat peanut M&Ms again!), no alcohol (EVER), and nothing really works. I use low level opioids as necessary and that’s a problem in and of itself. I hold out hope (as you did) to find a cure that’s not simply pain management.

    Similar to you I am highly active, work full time in IT executive management, run (half and full marathon levels), exercise, coach HS varsity athletics, work, am a Dad, even have the white picket fence so most if not all are not aware of my condition, and I very, very rarely tell anyone as they think it’s ‘just a headache’. I don’t have genetic makeup nor inclination to slow down and high activity levels takes my mind off of migraine.

    Sometimes it seems that that chronic migraine is the penance I pay for an otherwise blessed life.

    I am male, 57, and just have to think there’s a hormonal aspect to this as you’ve mentioned as migraine has gotten worse over the past 10 years or so. Contrary to what my GP and headache doc tell me, could ‘male menopause’ be something here? Also, do you or anyone else have any info or experience with trigeminal nerve severance surgery? I’ve avoided it as it can lead to partial facial paralysis, but am to the point that I want a cure, not more drugs to stay vertical.

    I hope you continue to heal, mind, body and spirit, and wish you and yours only the very best.

  • Sharon author
    2 years ago

    Headake – thank you so much for sharing your story. When I first wrote this, felt so alone and isolated with something so few others understand. I’m with you and a hormonal component… just not sure exactly what it is or how to address it. Wish I could say I ‘function’ at a high level, but not any more. Been trying to explore what kind of work I could do now, without being beholden to a set schedule.

    Thanks again for sharing your story.

  • GiGiW
    2 years ago

    Sharon,
    Thanks so much for sharing… Although my migraine hasn’t lasted as long as yours … Only 730 days… But who’s counting? I’ve tried almost everything available and feel like you I just need to learn to live with it! My headache usually stays between a 7-9 with a few days of 5 here and there. I’m told u Migraine is a result of a stroke and that is when it started. Due to the stroke I can not use traditional migraine meds… Because they restrict blood vessels and could cause another stroke… So I’m treated with several anti seizure meds. Also like you I have lost many things… Friends, career, independence, social life, etc. Bit im still here and able to watch my daughter be amazing mom and my grandson grow into a just as amazing young man. I’ve stopped trying to push through the pain and retreat to my dark cool bedroom with my meds, ice pack and a bucket! I have joined a support group for chronic papain, it has helped knowing I’m not alone, but o miss many group times because I just physically can’t do it! Like you I just put one foot in front of the other… Literally because that’s an exercise my Physical Therapist has me do to try to regain some balance. As Dory says just keep swimming. Again thanks for sharing… I have a way to go to get to your 2035+ days but I too will survive !

  • Sharon author
    2 years ago

    GiGiW – this morning I was able to get out and took a walk along the beach, in the warm sun, did a little yoga, and realized for this moment I am grateful to be outside and able to appreciate what is in front of me. Glad to hear your daughter and grandson are joys in your life.

  • Autumn Sparrow
    2 years ago

    Sharon

    Thank you so much for sharing this. I’m on month 5 of this path, which is nothing compared to your experience. I’ve lost my job, friends, family, you know the drill…

    Knowing that you’ve gotten through this hell somehow, gives me hope that I will be able to get through it as well even if the pain doesn’t let up.

    Thank you

    Autumn

  • Sharon author
    2 years ago

    Autumn thanks for responding… such a gift to know there are others who understand.

  • DonnaFA moderator
    2 years ago

    Hi Autumn Sparrow (Love the name! Sparrows and chickadees are my favorites!), we’re glad you’re here. I’m sorry that you have suffered so many losses, but please know that you are not alone. So many of our members share these experiences. We’re always here or on our Facebook page to chat or to listen. Thanks for being part of the community! -All Best, Donna (Migraine.com team)

  • DonnaFA moderator
    2 years ago

    Hi, Sharon. Thanks for sharing your story. We’re glad that you’re here. There has been a link to menopause and hormones (check out the articles at the links in your story and here).

    I’m sorry to hear that you’ve met with indifference in the health care community, unfortunately, you are not alone there. You may find some useful information in “Is It Time for a New Migraine Doctor?”, which can help you find a headache specialist in your area.

    I’d also like to invite you to join the conversation on our Facebook page.

    Thanks for being part of the community. We’re always here to listen. -All Best, Donna (Migraine.com team)

  • Sharon author
    2 years ago

    Donna,

    Thank you so much for your kind words and links to resources. Really appreciate it.

    Sharon

  • DonnaFA moderator
    2 years ago

    You’re most welcome, Sharon, it’s my pleasure!

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