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I have had a continuous migraine for two years straight (and I am losing hope)

  • By grither

    I have had an intractable migraine since October of 2017. Before that, I would get 3-5 a month, and I was getting Botox shots since middle 2016. Something happened and it became permanent.

    I stopped Botox a year ago at the end of 2018, and since then I tried six months of Amovic, and four months of Emgality after that.

    I was also on Topamax for about a year before the headache became permanent. I stopped it early 2018 because it wasn’t stopping the pain.

    I tried cortisone nerve blocks, and I also tried nerve blocks with lidocaine and dibucaine. I have tried a whole host of other pills.

    Pamelor, Neurontin, Elavil, Venlefaxine, Propranolol, Memantine, Indomethacin, and most recently Candesartan.

    I have tried imitrex in the pill form, but it stopped working as soon as it became intractable. I have tried maxalt and migranal. Migranal only helps a smidge. But nothing to write home about.

    I received some imitrex pens, but they make me very sick and it does not break it.

    I have tried chiropractic care. I bought a jaw guard for $700 in 2016 before it became intractable. The orthodontist told me that I had TMJ and so I got it made for my mouth. It never helped with the migraines when they were a few a month and it certainly does nothing now.

    I saw another TMJ specialist in April of this year at the University of Michigan Clinic and he told me that he thinks my migraine is neurological related. Not TMJ. And he said he could not recommend me to get another mouth guard. That was a dead end.

    I tried checking pulmonology because I have been having mild breathing problems. My pulmonologist ruled that my breathing issues are just asthma and not connected to my severe migraine.

    I had an MRA in May of this year that came up normal. I also had a brain MRI in January of this year that was normal aside from a 4mm pineal cyst.

    I am planning to go down to see a doctor in South Carolina to get his opinion that the cyst is truly harmless.

    I just had my eyes checked. My glasses are three steps too strong. My eye doctor thinks that it could be a partial factor but not the whole problem. I have to wait for November 9th before they can process my new glasses with my insurance.

    The only things that I have not tried are craniosacral therapy and getting tested for gluten.

    I am considering doing the craniosacral therapy soon. But I confess that I do not have high hopes.

    I was on norco when it started. And I got off it a year ago only to see no improvement.

    I saw a headache specialist at UOM from January of this year to September.

    On July 16th, 17th, and 18th, I did a three day regimen of six hours a day outpatient infusion therapy at UOM. They fed me a lot of meds and I only got mild relief on day three.

    Even so. It was the most relief I got all year. My daily headache dropped from an eight to a 4 for two whole days. And then it spiked to a nine for about ten days. And then dropped down to a steady eight after that.

    I did the same therapy protocol for three more days at UOM in September, from the 17th-19th. This time I got no relief at all.

    My UOM headache doctor basically told me he has no other ideas and he wants me to go to the Jefferson Headache Center in Philadelphia for inpatient treatment.

    I am trying to get them to call me back right now to figure out how to get my insurance to approve my stay.

    I am going to be brutally honest. I am losing hope. I sit in a dark room all day, everyday, for two years now. I cannot talk to anyone. I cannot list to music. I cannot watch tv. I can’t outside. I can’t be around lights.

    My college aspirations have vanished in the wake of this living torment. And my relationships with people are vanishing.

    I don’t know how I am still in a relationship with my girlfriend. But I feel as if I have no reason for being anymore.

    My eyes water from the pain for months on end and I can hear this buzzing that never goes away. I feel like someone is crushing my skull in a steel vice in an attempt to slowly murder me.

    The back of my head often feels like a rotted melon. I feel like my brain is spilling out when anyone or anything touches it.

    Is there anyone out there that can report success with the Jefferson Inpatient Program?

    I am in desperate need of hope. I cannot do this. I just can’t. I feel like I’m dying slowly. I don’t want to spend everyday of my life like this. I am scared that this is the new me.

    Both my regular neurologist and my headache specialist have told me that they are out of ideas. And now I am stuck with no plan. Other than dealing with it.

    I have read about people who’ve had their status migrainosus broken by infusion therapy.

    My headache specialist thinks it has been going on for so long that I need a really aggressive inpatient stay.

    I am really hoping that Jefferson can help me. Because I just cannot do this much longer.

    My life is gone. I wasn’t able to leave the house for one day all summer. Everything I used to love. Video games. Watching a show. Going on a hike. A bike ride. All gone.

    I can’t even go out to eat with people because the sound vibrations make me feel even sicker.

    If this is the rest of my life. I’ll be honest once more. I would rather die young than do this for the rest of my life.

    I am sorry for the depressing rant but no one is giving me hope. And I don’t think my doctors or anyone around me understands.

    This is no way to live. This has consumed my life and everything that used to be me. And I need it to end soon.

    reply
  • By Nancy Harris Bonk Moderator

    Hi grither,

    I don’t think you’re ranting, rather sharing your difficult journey with us, and I’m so sorry you are going through this. As much as it feels like you are alone, you’re really not! You’ve found a very compassionate community who understands what it’s like living with migraine and we’re here for you! Having a good support network is vital when living with migraine. Please try not to lose hope!!

    I hear you, living with daily, chronic head pain (or any pain for that matter) can leave us feeling isolated, exhausted, defeated and depressed. I’ve been living with chronic head and neck pain for over 20 years and boy does it get old. I’ve seen true expert after true expert (in headache medicine) taken medication after medication including methadone and oxycontin, to no avail.

    I’m currently seeing my 5th true expert and finally getting somewhere. I won’t be completely pain free due to other conditions, but have seen a reduction in my migraine attack frequency and severity, with Botox every three months. The thing about taking medications is it can take up to 90 days before we see a reduction in migraine attack frequency and severity, which may seem like forever. The thing is if we don’t give each medication a fair trial, we’ll never know if it would have worked. Does that make sense?

    You mentioned you’ve been to UOM, but what about Michigan Head Pain & Neurological Institute? This has some world class headache medicine experts who may be able to help. I’ve spoken with a number of patients who have had success going there as well as those who have been to Jefferson. If you do a bit of digging here in the discussion forum, you’ll find first hand experiences from both these facilities.

    I’m going to stop now and let you absorb this information. We’re here for you. Will you keep me posted on how you are doing?

    Nancy

    reply
    • By grither

      Hello to the both of you and thank you both for the replies.

      I don’t believe that I can go to MHNI. I called them back when this first started and they told me that they didn’t take Medicaid.

      I am on SSDI with Medicare, and I have Medicaid as my secondary. I want to try them. But I have heard that sometimes it costs thirty thousand to hospitalize and I don’t want to risk the bill.

      I have heard that you can get insurance to prior authorize to cover a portion of a bill if a service can’t be done in state.

      So, I am going to see about prior authorizing my Mediciad to agree to let me visit the Jefferson clinic.

      I just don’t know what to do. I can’t handle this never going away.

      Nancy, have you had a migraine for twenty years straight? Like do your attacks come and go? Or is it ever present every moment?

      That’s what’s driving me insane. I no longer have any pleasure in my life. It is every moment, every second of every day.

      I didn’t used to be like this. I used to be able to talk with people and listen to music with friends. And then this happened two years ago.

      My migraines used to just be an occasional attack and I would pop an imitrex, and go to sleep. And then I would wake up ten hours later free of any migraine.

      I have tried more drugs than I listed. Back when I first started getting the occasional migraine in 2014 they tried me on a number of preventatives.

      Things like Lyrica, Requip, etc.

      Again, it was a trivial issue back then. So insignificant that it didn’t rule my life. And at some point I got imitrex, and the occasional pill was enough.

      Is there hope to break this continuous cycle and manage it so it doesn’t become permanent again?

      I just keep looking for some sort of proof that they can break it. And so far no doctor I know can give me that.

      My headache specialist at UOM was of little use. He was cold, and almost dismissive. I only saw him for eight months before he pushed me aside and told me to go to Jefferson.

      Beachbumgirl, does the nerve simulator help?

      Have you found a way to break years of intractable pain to get relief?

      I have tried the following drugs below:

      Lyrica
      Neurontin
      Requip
      Trleptal
      Pamelor
      Elavil
      Depakene/Valproic Acid
      Imitrex
      Vistiril
      Topamax
      Buspirone
      Fioricet (2015)
      Napraxen
      Motrin 800
      Venlefaxine
      Propranolol
      Migranal
      Amovic
      Memantine
      Indomethacin
      Duloxetine
      Injectable Imitrex
      Emgality
      Candesartan (currently taking for five weeks to no result)

      I took about half of these meds back in 2014-2016 when it was just a few migraines here and there. No preventive worked for me.

      And eventually they gave me imitrex.

      And the other half is more recent. I took about half of those in the last two years.

      I’ll keep you both posted.

      I am just losing hope. I am in so much pain. And there is no escape. Every moment of every day. I know that I will wake up with it and at this point I think that it will never go away.

      I fear this. I am terrified. I cannot live like this for the rest of my life. I do nothing but sleep. Because my skull is being crushed when I am awake.

      The pain is far worse this year than it was in 2018. It’s progressing and I feel like I am trapped with my back against the wall.

      And even my own headache specialist was not able to reassure me.

      It’s a cruel cycle. Every time I take something I hope for relief only to get nothing but bitter disappointment.

      I just need something soon. I want my life back.

      reply
  • By beachbumgirl

    Grither-
    I’m so sorry you are going through this!
    I have a few suggestions:
    Try Jefferson Headache Center. They won’t be afraid of your case and there are so many options you haven’t tried. I hope they can help you with the insurance part. Keep on with them daily until you get an answer.

    My headache specialist has tried 67 drugs. Several treatments including years of botox, aimovig, Emgality, nerve blocks, propofol with meds, etc.
    I know have a nerve stimulator.
    Many options out there for pain control.
    Best wishes and keep us posted.

    PS: Nov. 25. I go to Jefferson Headache. 👍

    reply
  • By grither

    The most frightening thing is that I am not getting migraine attacks as in they come and go.

    It’s been present every moment without one break since October of 2017. And I am tired of laying in bed crying waiting for it to stop.

    After all of this time I am just as screwed over now as I was when it started. I feel like I have made no progress. At all.

    reply
    • By beachbumgirl

      I have continuous also. Have you tried asking your pcp who they recommend you see? There are a few great Headache clinics in the USA, if that’s where you are.
      I believe someone mentioned MHNI. How about Chicago?
      ( that was mentioned to me. )
      I’m sure the moderators can give you a list of the best ones in the USA.

      Keep it up. It’s relentless, like your migraine. 👍

      reply
    • By grither

      Unfortunately my PCP is kind of useless. I can easily get him to fill out paperwork, and he’ll write just about any script. But he’s one of those doctors who you kind of wonder how they got their degree.

      He doesn’t like to talk for more than a minute and he is very short.

      I don’t usually worry about it though. Because I have seen so many neurologists that it seems like a waste of time to ask for his input just so he can say he doesn’t know.

      I did research between the Diamond Clinic and Jefferson, and it seems like Jefferson has more tools at their disposal.

      I made an appointment for Jefferson on January 6th. I chose Jefferson over Diamond because they have lidocaine infusion therapy.

      I haven’t been responding to the DHE infusion at UOM so I don’t want to go down to Chicago just so they can do the same failing trick on me.

      So, I am gonna go to Jefferson because it sounds like they have more resources at their disposal. Or so it sounds.

      Thanks for the reply.

      reply
  • By Nancy Harris Bonk Moderator

    Hi grither,

    I’m also on SSDI and a Medicare advantage plan which limits us somewhat.
    Yes, I have daily head and neck pain, in varying degrees, and on top of that migraine attacks. However, my migraine attacks have dropped from about 28 a month to between 12-14 with using Botox and Cefaly. That’s improvement! My migraine attack are in varying degrees as well – some are mild and easier to treat with sumatriptan now, and occasional nasty ones.

    I understand how discouraging this all is, but stay hopeful! That’s a fairly long list of medications, but rest assured there are many more to try.

    Something I meant to ask – is there any chance you take something every day, or nearly every day to try and relieve this pain? If we take pain relievers and/or migraine medications (triptans) whether they are over-the-counter or prescription, more than two to three days a week it can increase our risk of getting rebound headache. Rebound headache makes our migraine attacks more difficult to treat and we can end up in a daily cycle of pain that may be hard to break. I’ve been in a rebound cycle a few times; once from opioids and the other time caffeine! If I have more than one or two cups of coffee for a few days, I’ll put myself into a rebound cycle, and nobody wants that!!

    I hear you on feeling like you are making little to no progress; I felt the same way for about 16 years. Then I saw my current doctor and things are slowly changing. Migraine is thought to be a brain disease, which is managed, not cure. I’ve recently relocated and am very nervous about my migraine care – finding a new doctor and so on. If I have to I’ll continue to drive four hours for my Botox!!

    I’m here for you and hope today is a low pain day,
    Nancy

    reply
    • By grither

      Hi Nancy,

      I take Migranal for the pain. Not that it does anything. I take it usually two days a week. But I confess that I may sometimes forget and take it a third day.

      I have been taking it for about a year and a half. I started taking it about sixth months after the migraine became intractable.

      I have tried many things. I have tried not drinking caffeine for four or so months. Only to find that there was no difference in the pain when I do or don’t drink it.

      I am always tired, and my eyes are always heavy. I am a novice writer in my spare time.

      And often I find myself falling asleep even if I slept eight or nine hours. When this happens I drink some caffeine so I can keep writing.

      Like I said, I am always in pain. I have no control over it.

      And the scary thing is that I have not had one pain free day in the last two years. Not even ten minutes.

      I would be less frightened if I had gotten some pain free days in between.

      As I said above. I don’t get migraine attacks as in singular episodes. This has all been one continuous episode for almost 760 days.

      I am at my wits end. If Jefferson can’t break it. I don’t know what I’ll do.

      I am autistic, and it has come to a point where all I do is obsess over this. I try not to think about it. But how can I? My skull has been being crushed for two years straight with no break.

      Although I would like to ask you.

      Would it be to my benefit to possibly stop taking Migranal since nothing aborts the pain anyhow?

      I just wasn’t sure if I would be better off stopping the DHE nasal spray. Maybe that would lessen the pain?

      The problem is. Everything I try. And everything I do puts me back in the SAME spot I was at before.

      I also wanted to ask about Botox.

      I was taking the Botox for over a year before this became intractable. The Botox seemed to be helping back when I was getting five or six migraines a month.

      It is possible that I may have been overusing imitrex way back in 2017 before this evolved into a continuous pain.

      I have only taken imitrex like three times in the last year. So I am off that now.

      But I was wondering. I go to Jefferson on January 6th and I will be seeing Dr. Young. They are going to get me set up for inpatient therapy.

      If they can break it, and I hope so hard that they can.

      Would the Botox possible be effective once more as a preventive once I am pain free?

      I have been wondering if I should restart Botox after they break it.

      I just need to believe. I desperately need to believe. That there is hope. And that this can be broken soon.

      I am going insane with this ever present pain. It is such a cruel way to live. I anguish and long for a day without a headache.

      And that is the worst thing of all in my mind. I haven’t had even one day without a migraine in all that time. And it is sapping the life out of me.

      I appreciate the kind replies. I really do. And I hope this is not how things will stay.

      reply
    • By Vivmac00

      Hello, I am new here and this is my first time posting anything. I have had a migraine literally every day, for as long as I can remember. They never go below a 3 or 4 (on the 1-10 pain scale). My mother says that after I learned to talk, I would point to my head, saying “mommy, head hurts” or something. Have tried all the meds, botox, chiropractors, had MRIs & CTscans. Neurologists say that I’ve tried everything medically available in the US (are they hinting for me to look outside the country for treatment?) Nothing touches it. The best I can do is Aleve (yup!). My current diagnosis is: chronic migraine, with aura, without status migrainosis (sp?).
      I guess I just wanted you to know that you’re not alone in this. I know, your situation is different in some ways, but I promise you that I know how some of it feels. To not have a life. To not be able to do…just so many things. Anything. Everything. I know how much it sucks to think that THIS is how your whole life could be. …I’m probably just depressing you even more! Misery loves company, right? 😏
      Really, it is so hard sometimes to keep going. But I have read more than a few stories on here from people who found some kind of relief, and it seems like many had to go through whole lists of meds & treatments before they found what worked. You never know, whatever you try next might just be it!

      I hope you find something that works for you! Work with your body, but fight the migraines. Don’t let them win! Wishing you the best of luck for your appointment on Jan 6th!

      reply
    • By Nancy Harris Bonk Moderator

      Hi Vivmac00,

      Your supportive and encouraging words are wonderful – thank you for sharing them with us!!

      Nancy

      reply
    • By Peggy Artman Moderator

      grither,
      I am so sorry you are dealing with unrelenting pain. It can be hard to stay hopeful in the midst of constant pain. It sounds like you are on the right track on seeking care at Jefferson. I’ve heard so many good things about that clinic. I am currently dealing with unrelenting pain in my back, neck, and head. For me I think it is the changing seasons. Some months I have a few good days along with mostly moderate pain. Those are the good months for me.

      So hang on… we are here for you!
      ~ Peggy (Migraine.com team)

      reply
  • By Nancy Harris Bonk Moderator

    Hi there!

    Thank you again for sharing this with us, it’s a tough one, but we’re here for you!!

    I can tell you what helped me cope with dailly, intractable pain was speaking with a counselor who specializes in chronic pain. She was able to help me learn some invaluable skills on how to live with daily pain. Just a thought….

    Dr. Young is amazing – I’m so happy you will be seeing him. I know many, many patients who travel great distances to see him and have good results. I would ask him the same things you asked me here, as I’m not a medical professional and he is one of the best!

    My fingers are crossed things improve asap. Will you keep me posted on your appointment?

    Nancy

    reply