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Diagnosis: Stuck in a Migraine

Has anyone been diagnosed as being stuck in a migraine?
I have, "stuck" being having pain 24/7 and varying in degrees. The major triggers are being vertical and the weather.
Cold weather is worse than warm weather but pressure and changes in the season are not easy to take.
I have had multiple tests and medications. So far nothing.
I hope that I am not alone with this style of migraine. It has been 16 years non-stop....so tired of pain!

  1. I have been diagnosed being "stuck" 24/7 with a form of migraine. It started a couple days after the tailgate corner of my PT Cruiser hit me in the head and cut my scalp. It's been non stop almost 8 years since then. During that time, I've had physical therapy for the neck and head, acupuncture, different meds and tests. The only medication that has given me any relief is Gabapentin and am on a large dose of it now, which makes me tired. My current and 4th neurologist is going to keep upping my dose to try to get my nervous system unstuck. He was the first neurologist to diagnose me as being "stuck." I was switched from Zoloft to Cymbalta, which is supposed to help pain. That did not make any difference. The only weather that makes it worse is when it is hot. Moving around a lot also makes it worse.

    I am 70 yrs old and had to retire early, because of this. I don't get anything done, and my husband has been doing the cooking and cleaning, etc. I hate to think of having this as long as you've had it!!

    1. Hi JeanJ,

      Thank you for sharing your story with us, I am however, sorry to hear you are having a difficult time. Let me see what information I can give you that may be helpful.

      My chronic migraine was triggered when I fell and sustained a traumatic brain injury (TBI) from a fall. It's been a long road with migraine disease and chronic head and neck pain along with a few other chronic conditions. I've failed many, many medications for migraine attack prevention, and took methadone for 3.5 years, which is not a great alternative. Opioids mask pain, they don't stop the migraine process.

      I did want to mention when we start new medications, it can take up to 90 days before we see a reduction in our migraine attack frequency and severity. And during this time potential side effects may lessen. And each time the dose is changes, it may be while before we see a difference in our migraine attacks.

      It's not easy giving up our career to migraine disease, I'm on SSDI and it's been an interesting journey. Having a good support network is important when dealing with any chronic condition. Is your doctor supportive and does he listen to you? If not, it may be time to find one who will. As I mentioned to lynni, neurologists are not necessarily board certified in headache medicine (even if they claim to be experts) which is different than being certified in neurology. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson’s and others. I’m currently seeing my 5th true expert and finally think I may be getting somewhere. Here is information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

      But, don't lose hope! Gabapentin is used for migraine prevention in addition to 100 other medications and supplements!

      Let me know what you think,
      Nancy

    2. Hi, Nancy.

      Thank you for replying. The neurologist I am currently seeing is also a headache specialist at a well known medical center in my Southern California area. In fact, when I clicked your link to find one in my area, his name popped up. I recently started Botox shots with him, but the first round didn't do much for me. He is going to have me go through one more round of Botox shots to see if they will help.

      I've also had a sleep study, which revealed that I have a very mild case of sleep apnea.

      I tried many meds before going on Gabapentin. It started helping me in about a week. That was 3 or 4 years ago, and now I take 900 mgs 3 times a day. My headache specialist's assistant just doubled my dose of Amlopidine from 5 to 10mg. She said to document my blood pressure everyday.

      I hated to retire from my county government job early, because I liked it and the people there. To be able to collect my pension, I had to work over a year after my non-stop migraine started. That was very difficult, to say the least!! I never tried to get disability, though.

      Thank you for being an advocate for people with our medical issue, including yourself.

      Jean

  2. I hope you don't have yours as long also. I have tried Gabapentin. Didn't work for me, plus my body is real sensitive to medications and their side affects. The only relief I got was when I was taking Methadone. But I was taken off of that over a year ago.
    I didn't hit my head or anything. Just had a migraine and it never stopped.
    I'm only 57 and I had to stop working. I can't be dependable to show up or even stay at work. I never know from one hour to the next how bad it will get. And I enjoyed working. Oh well...I. am glad that you have found some ease.
    I am on my 4th. doctor also. 2 neurologists and 2 headache doctors. Waiting on the new drugs that are suppose to be put soon.
    Then will be back to trial and error again...lol
    I hope they can get you unstuck soon. Ill be praying for you to be back to normal as soon as possible!!

    1. Hi, I am new to this forum. So glad to find it. I am 52, and had never had a migraine until about six weeks ago. One afternoon it hit me and it hasn’t stopped since.

      It isn’t related to an accident. But I did have a hysterectomy last year, after which time I’ve suffered from severe menopausal symptoms. Could cessation of hormones be related?

      I saw my pcp doctor after almost two weeks of unabated migraines. She gave me sumatriptin and told me to take excedrin, which didn’t help. Took it for 24 hours, 3 times.

      The next day I had to go to the ER so they could stop it. Not sure exactly what potion they gave me as it was 2 am and I had waited 8 hours to be seen; I do recall one drug was reglen (don’t know if that was just for nausea) and something else. Great. Migraine went away.

      Left hospital. Four hours later, back it came, and has basically been consistent ever since. I say “basically” because I take meds for sleep and once I go to sleep, it seems to go away by the time I wake up. But then when I start moving around, it just ramps up again.

      It does help somewhat to keep blinds drawn, low lighting, etc., but only to the point of making something intolerable barely tolerable. Gets progressively worse as day wears on usually cranks up by 4 pm to being worst and goes on from there. Does anyone find it worse in afternoon/night?

      I can definitely sympathize with those who have had to quit their jobs as a result. I haven’t been able to do much around the house, and going anywhere is torture.

    2. Hi ShelbyM,

      Welcome to the Migraine.com discussion forum! We're glad you've found us too!

      I'm sorry to hear you are having such a rough time right now, I understand how frustrating it is to be in constant pain. It can be tortuous to live with chronic pain for sure. Life is much more difficult living with any illness.

      A few things come to mind. When we wake with migraine pain, it may be an indication of a sleep issue, and not just sleep apnea. I constantly woke up with migraine pain and had a sleep study done, actually two. No sleep apnea, but I do have restless leg and periodic limb movement disorder which both contributed to morning pain. I know take a muscle relaxer medical cannabis before bed and it has helped tremendously with this particular issue. Here are a few articles on this topic; https://migraine.com/blog/movement-disorders-and-migraines/ and
      https://migraine.com/living-migraine/sleep-insomnia/ and
      https://migraine.com/blog/migraine-triggers-sleep-1/.

      Are you by any chance taking something every day, or near daily to help relieve pain? The thing is we can increase our risk of rebound headache if we take migraine medications (sumatriptan etc.) and/or pain relievers, whether they are over-the-counter or prescription more than two to three days a week. If we are in a rebound cycle our migraine attacks may be more difficult to treat and we can end up in a daily cycle of pain, that just plain stinks! I've been here, it's not fun, but can be dealt with. Let me share this information on rebound (or medication overuse headache) with you I hope helps; https://migraine.com/living-migraine/stop-rebound-headaches/.

      Let me know what you think and have a good day!
      Nancy

  3. Hi Nancy,
    Thank you for the info that you gave me. unfortunately I have been through most of the medications you put down, plus extra...lol I was on methadone myself for over 10 years. I could function, but that was about it. and that was only if I didn't push myself too hard. I also am on SSDI. The doctor that I am with now came from Johns Hopkins. He is a headache specialist, but he is very busy and communication is hard. Because I have so many allergies and am very susceptible to side affects I am on my own until new medications come out. I have done infusions, nasal inhalers, and so many different medications with no help. My sleeping isn't the greatest. On the methadone I was only sleeping 1 1/2 hours a night; now I am sleeping a bit more. On good nights I can get a total of maybe 3 hours, but it is broken. I know that it isn't helping my headache, but I can't sleep any more than that.
    It is nice to be able to talk to people that has an understanding of the pain migraines bring along with everything else.
    And it is nice to share our stories and what helps each of us cope with everything.
    Thank you again for sharing with me.
    May you all have great days and nights ahead of each of you!
    Lynni

    1. Migraines are NOT your typical headache! They are actually a collection of neurological symptoms that can be incredibly debilitating. Over 90% of migraine sufferers cannot function or normally work during their migraine headache--that's how bad they are.

      Some of the symptoms of a migraine headache include:

      Pulsing or throbbing sensation in one area of the head
      Nausea and vomiting
      Extreme sensitivity to sound and light
      Flashing lights and blind spots
      Tingling in your legs or arms

      As you can see, these headaches are NO JOKE! They're very painful and debilitating, and can be potentially life-threatening if you get a migraine while driving or operating heavy machinery.

      But what causes migraines in the first place? The sad truth is that migraine headaches aren't fully understood. According to WebMD, "migraines may be caused by changes in the brainstem and its interactions with the trigeminal nerve, a major pain pathway."

      If your brain doesn't produce enough serotonin--a hormone that helps to regulate pain signals sent by your nervous system--your body may suffer extreme pain during the onset of the migraine headaches. Serotonin levels plummet during migraine headaches, causing your body to be flooded with neuropeptides that cause headache pain.

      I have also got some more information on www.mygenericpharmacy.com

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